Fibro Friends

I'm still living!!!!

2011-11-19T21:54:00.003-05:00

I'm sorry that it's been so long since I've posted here. I've been very sick for the last 6 months or more and almost bedridden. I've had a severe swallowing problem caused by severe acid reflux, in which my esophagus had actually shrunk. I haven't been able to get most of my medications down and it has caused me to be very sick. The pain levels were daily 9 or 10's and even with the pain meds that I could get down (oxycodone) it would still be about an 8. I haven't been able to do much of anything, especially for my family, which is what hurt me the most. I love my daughter and husband very much and they are very supportive of me. I hated having to load even more work onto their shoulders, or even worse, the work just not getting done. My daughter is only in the 1st grade,so she doesn't understand why her Mama can't play with her or why I'm always lying down. The one thing that I did make sure of to do though was to always go over her home work every day. I didn't want her falling behind in school because of me. Some days this was done from my bedside. Most often from my recliner.............my faithful recliner, where I live!

I had had the swallowing problem for over a year and I should of had something done about it way back then, but money is tight around here and I just didn't think I could afford it. I thought I could just learn to live with it. But the swallowing just kept getting worse until finally I couldn't eat or drink and especially not take my medications. The only ones I could get down were the tiny ones. The others that I HAD to take, like my blood pressure and diabetes meds, I would have to break into small pieces and take little bits of them throughout the day. This wasn't the way they were intended to be taken and my health did suffer for it, but it was the best I could do. Then when I finally did decide that I couldn't live with this condition and I needed to seek medical attention I had to follow the chain of command to get anything done. First I had to see my primary doctor, just to have them refer me to a gastroenterologist. Then I had my initial consult with the doctor who schedule an endoscopy for me 1 1/2 months away. They didn't tell me at the time where it would be done at so I assumed it was going to be at the hospital right next door to them. Seemed logical to me!!! Well, it wasn't and it was actually going to be at a place too far to drive for us and still be able to be home for my daughter when she got out of school. So I basically had to start ALL over again. Go back to the primary doctor , get another referral, blah, blah, blah. It basically took over 3 months to have the endoscopy done once I finally decided to proceed with it. By that time, I had already lost 30 lbs from not eating (which I was happy about!!).

I had the endoscopy done this past Thursday and I'm already feeling better as far as swallowing. They did do some biopsies of my stomach, but don't expect to see anything there. I have started back on some of my meds, but I can't start them all at the same time. I had to take it gradually, otherwise I might overdose or something!! The main med that I was missing was my neurontin. I had been on a dosage of 800 mg 4x day before I had to stop taking it. Right now I am taking 400 mg 2x day as of yesterday. I will have to stair step this dosage up gradually until I reach a level that is actually helping me again. Even the 400mg 2x day is helping a little. Funny though, I didn't realize how much it helped me until I couldn't take it and had to do without it. I'm just thankful to God that I can take it again.

And it's coming at a crucial time..........fall and the onset of winter. These cold fronts have been killing me with pain, stiffness, etc...... I have fibromyalgia, osteoarthritis, ankylosing spondylitis, sjrogens, migraines, and a host of other medical problems. These are all affected by the weather for me. I don't know about you.

Anyway, I just wanted to say I'm sorry for being gone for so long , but that I'm back and hopefully will be posting regularly again. I really love this blog and I hope you do too.

Teresa

The Fog Days of Summer

2011-06-13T17:25:00.002-04:00

After surviving the longest, wettest, coldest spring that I can remember in the Pacific Northwest, I am having trouble adjusting to the fact that it's mid June. Mid-June! Unbelievable. I'm having a hard time wrapping my head around the fact that summer is right around the corner. Our weather is certainly not doing a thing to convince me that it is truly the middle of June.

Unfortunately, the thick bank of fibrofog that has descended on me is right on schedule. Maybe even a little early. I can't figure out why but mid-June to mid-July is my foggiest season but it is. And it really bums me out. My pain and stiffness are easing up and the feeling of general malaise is dissipating, so I should be doing really good. Why, why, WHY does this time of year always get ruined by the damn fog?

In the past, I've suspected maybe it's the adjustment to the kids being out of school and not getting into a routine right away. Maybe it's the sleeping in a little later and not getting out to walking the dog as early. But the fog is here and the kids are not yet out of school so that can't be it. It also can't be the typical weather pattern of marine clouds in the morning and afternoon sun because we haven't gotten to that yet. (Although that does seem to aggravate my fog).

Whatever it is, I wish it would go away. I hate feeling like this. I feel so disconnected from everyone and even from myself. I can't focus my eyes. I can't process half of what goes on around me. I can't think straight (or at all sometimes). Life just doesn't seem...real. It reminds me of when you're halfway to getting drunk, when your brain slows down and it feels like everything is moving too fast around you and shifting around in jerky motions. (At least that's how I remember feeling when halfway to drunk - I don't drink anymore. I spend too much of my life trying to obtain mentally clarity to throw it away on substances that make me feel weird!)

Somewhere in the distant, fogged in corners of my mind, I can remember posting an article about supplements to take to help with the fog. (Or did I only think about posting it?) I think it's time for me to hunt down that article and try some of those supplements because I do not want to feel like this for the next month.

Wherever you are, I hope your weather and your fibro symptoms are treating you better!

Namaste!

Trish

A couple of good articles

2011-04-26T20:15:00.000-04:00

Sorry I haven't posted in so long. Again. The last couple of months have been busy and difficult and I can't seem to find the motivation to do much of anything. It's something I'm working on, so I hope to post more frequently in the near future.

Here are a couple of interesting articles about fibro. Both of them validated some of the odd things I experience so I thought I'd share them.

The following article probably has the best description of fibro that I've read, so far. I was surprised to see difficulty in focusing the eyes listed. I definitely have that, but I hadn't read about it anywhere else. Anyway, I thought this article would be a good one to bookmark to send to anyone who wants to know what having fibro is like. (Or, even if they don't want to know but you think they should :)

http://www.fmnetnews.com/basics-symptoms.php

Here is another one that explains (a little bit) the effect the weather can have on our symptoms. I definitely notice the worsening of symptoms in December and an improvement in April or May when it starts warming up. I also feel it when low pressure moves in. It's good to know this is normal!

http://www.fibromyalgia-symptoms.org/fibromyalgia_weather.html

Does the weather effect you in this way? What about low humidity, does it worsen your symptoms? (I'm just curious - it's very wet here so low humidity isn't something I have much experience with.)

An Interesting Article on Fibrofog

2011-02-16T22:37:00.000-05:00

Finally, an article that recommends some medications and supplements that might help with fibrofog! http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=14402&B1=EM021611&slvor=10594.1032735.0.1.0.37055&eid=fibrohaven%40gmail.com

It lists tricyclic antidepressants as possibly making fibrofog worse but it seems like my fibrofog episodes are much less severe since I started taking amitryptiline. Of course, I'm only taking 20 mg and I'm not feeling much of a sedative effect.

I'm certainly willing to try some of the supplements. CoQ10 is expensive but it also helps with fatigue so a round of it might be worth a try.

Another thing I found very interesting about this article is that it talks about how fibrofog might be caused by all the extra signals the brain is receiving because of pain and fatigue. Something I've noticed is that I get brain fog from being somewhere noisy with lots of movement and different things going on. My brain essentially shuts down for the rest of the day after time spent in noisy, busy environments. I wonder if it's the same thing - the brain becoming overwhelmed with too many signals?

Does this happen to you? Have you found anything that helps with it?

From Fatigued to Fantastic - A Book Recommendation

2011-02-04T15:32:00.000-05:00

I finally got around to reading From Fatigued to Fantastic by Jacob Teitelbaum, M.D. and I'm very glad I did. Dr. Teitelbaum has treated thousands of fibromyalgia patients and even suffered a bout of CFS/FMS himself so he knows what it's like and, most importantly, believes that CFS and FMS are real conditions. I thought his theories about the causes and/or underlying conditions make a lot of sense and the treatments are very doable and affordable (provided you can find a doctor to prescribe them). He does recommend products that he helped develop but, as he donates all his royalties to charity, I didn't feel like the purpose of the book was to promote his products. Another thing I really like about Dr. Teitelbaum's approach is that he recommends use of both traditional drugs and alternative therapies and he gives an overview of each treatment. The more I learn about fibromyalgia, the more I feel a variety of seemingly subtle and unrelated treatments is going to help more than that one magic pill that researchers can't seem to come up with anyway.

Dr. Teitelbaum recommends a SHIN protocol

S - Sleep: The Foundation of Getting Well

H - Hormonal Support

I - Infections: Destroy Your Body's Hidden Invaders

N - Nutrition: Optimizing Your Body's Ability to Heal

At the end of each chapter, there is a list of questions to answer and directions for marking off the treatments to create your own treatment protocol. Some of the supplements and natural treatments you can start on your own right away. I've been taking the Revitalizing Sleep Formula, Ribose and adrenal support formula and, although I'm still having migraines and flares, I'm feeling much better than I generally do in February.

After reading this book, I feel much better prepared for discussions with my doctor about possible treatments, I feel much more hopeful that I can and will feel better and I feel like I understand how declining hormones - progesterone, estrogen and thyroid - could be what's making my fibro worse.

If you'd like to learn more about any of the From Fatigued to Fantastic products or research, Dr. Teitelbaum's website is http://www.endfatigue.com/. (Just a hint - you can find good deals on some of these products at Amazon.)

Feeling Like Garbage

2011-01-28T14:47:00.000-05:00

February is almost upon us and, for me, this means the most difficult time of year has arrived. I feel like garbage every single day. The weird, congested, achy, sick feeling across the middle of my back always flares up this time of year and it's the hardest pain for me to deal with. It doesn't go away when I sit down like my other pains and it's often accompanied by a feeling of sadness. It's a very heavy feeling that makes it very hard to get out of bed in the morning. In addition to that, my legs, hips, shoulders, arms and feet hurt and I'm having daily headaches AND more migraines again. Oh, and fatigue too. I can't forget the fatigue. I live in a split level house and having to go up and down those stairs a dozen times a day is exhausting. I feel like I need to lay down on the landing for awhile to get the strength to make it up the rest of the stairs. It's not fun. I wish I could just go to bed and not get up until this part of the year is over with.

And the hardest part? This could go on for months. Sometimes, I start feeling better in April but often feeling better doesn't start until May. Last year, it was July.

It's very hard to keep a positive attitude when faced with months and months of feeling like garbage. But I am determined to stay positive and be happy this year. I don't want to be depressed, angry and bitter on top of being physically miserable.

I suppose the first step is to stay in the moment and take it day by day, instead of focusing on months of misery ahead. Maybe I'll feel better sooner this year. I do have some new tools in my fibro toolkit. I bought the The Trigger Point Therapy Workbook and I've had great success in treating my hip pain. I think the weird pain across my back may also be caused by trigger points so I'm working to figure out which ones so I can treat them too. And, I've discovered that doing a short, easy yoga routine every day helps reduce my pain levels. I've also read some good, hope-inspiring books about fibro lately which I'll share more about later because I'm tired now, which I'm sure you understand all too well!

Holiday Craziness

2010-12-10T15:11:00.000-05:00

My fibro always takes a turn for the worse every December. It's probably a combination of things: the weather growing colder and damper, eating too much sugar, the stress of all the extra things to be done and the lack of time to properly take care of myself. Every year I cut more and more things out of my holiday to-do list and every year I still find myself feeling stressed, out of balance and in pain.

I decided this year was going to be different. I cut my holiday to-do list down to the bare minimum, I started doing yoga every day, I bought The Trigger Point Therapy Workbook and some massage tools and I was making great progress on working out my trigger points and reducing my pain. Also, I had my new office, a private, quiet place of my own to retreat from the noise and chaos of the kids. My plan for a better holiday season was going great.

Then, last Friday, the valve under my bathroom sink exploded and both upstairs bathrooms, our bedroom, my office (which is underneath the bathroom) and part of the garage flooded. Since then, we've had these big noisy fans and dehumidifiers running 24/7 and we had to have the bathroom floors, part of our bedroom floor and the ceiling to my office torn out. My whole routine has been turned upside down, nothing is where it should be and every day contractors have to come out and check the drying process or tear something else out. All my self care techniques have been lost in the craziness. I have lost my areas of sanctuary. I have nowhere to go to get away from the TV that all males have to have blasting at all times, whether they're watching it or not.

Now, it's two weeks until Christmas and I haven't bought a single present, sent a single card or put up a single decoration. Am I feeling healthy, balanced and peaceful like I planned. Hell, no! My mind is so scattered I can't hold it together enough to complete the simplest of tasks and every day the pain creeps back more and more.

I'm very sad about this. Why does every holiday season have to be like this? It's like since I decided to not participate in all the frenzied craziness, the frenzied craziness just finds its way into my life in another way.

I might be able to pull it together once the fans are out of here. But that's not going to be today. The guy is here checking them now and he's not unplugging any of them. Now is one of those times that I really, really wish I could be like a normal person, completely not bothered or effected by noise and chaos. But you know how it is with fibro. Every noise is like a rake running across every nerve in your body. And, because of the fog, having things out of their place makes everything that much more difficult. Operating on auto pilot when your mind has checked out just isn't possible under these circumstances.

So, once again, I find myself wishing the holidays would just be over already so there would be less to deal with. And I don't want to feel that way! Really, truly I don't.

The Depressing Truth about MSG

2010-11-22T15:52:00.000-05:00

First of all, I apologize for not posting for so long again. I've been in a creative funk lately. I'm afraid that the cognitive impairment that comes along with fibro has made me into a worse writer than I was before. I can't remember how to use commas most of the time, I use the same words over and over and I can't remember what some words mean. Also, I can't seem to stay focused on my topic or make the points I want to make. *sigh* I really have my doubts about whether I'll every be able to achieve my dream of writing and publishing a book, thanks to stupid fibro.

Anyhow, while I was already wallowing in these depressing thoughts, I ran across a couple of websites about MSG. Let me tell ya, this did nothing to improve my feelings of hopelessness!

I've long heard that MSG and artificial sweeteners, particularly aspartame, are bad, bad, bad and should be avoided but I never did any research to find out why. The immediate and intense pain that followed the consumption of aspartame was enough to convince me that I should stay away from it. Even just a small amount of aspartame leaves me with a horrible headache and intense "phantom" pains in my extremities. The effects of MSG aren't as dramatic for me though. Sometimes I eat it and seem to be just fine. Other times I feel like it works with salt to make me retain water, feel generally yucky all over and have aching in my hips, shoulders and joints.

I finally ran across an article that said that aspartame and MSG are both excitotoxins that act on the nervous system. Now, I'm no doctor or scientist, but knowing that my nervous system is already overexcited and out of whack, avoiding anything called an excitotoxin seemed like a good idea. I did my best to avoid items that had MSG listed as an ingredient. But, when I'm in my PMS food craving stage, it seems like I actually crave food that has MSG in it, such as cheese flavored potato chips.

And, unfortunately, my willpower was very weak during my last PMS food craving stage and I gave in to it. I ate some Sour Cream and Cheddar Ruffles and I've been paying for it for almost two weeks now. I puffed up with fluid that just won't go away and I'm having terrible aching in my hips and shoulders and my arms ache and go to sleep almost every night. Plus, I feel...polluted, like there is gunk in between all the cells of my body. This prompted me to do some more research on MSG.

These are the two websites I visited: http://www.msgtruth.org/ and http://www.msgmyth.com/

From what I read, it doesn't seem like my reaction to MSG is typical. What was depressing about it though is the list of foods to avoid. (Found here: http://www.msgtruth.org/avoid.htm ) Food companies are putting MSG in everything! Pretty much every time we eat we're poisoning our body and nervous system.

Upon first reading this information, I wasn't sure whether I should just lay down and die because I could never survive on nothing but brown rice and organic veggies (that's mostly whats on the elimination diet at msgtruth suggests) or, just drown myself in a bag of Sour Cream and Cheddar ruffles because there's no way to avoid this stuff anyway.

After reflecting on this for a day or two, I decided to print out a list of all the hidden names of MSG and avoid foods that have them. The website says that all milk except whole milk has MSG of some form but my Organic Valley nonfat milk doesn't list MSG by any name so I'm going to trust they don't put it in there. Maybe this is naive of me but I think a moderate approach to this MSG thing is probably best. Trying to avoid every food that might have it because some website says so seems a bit too extreme for me. I'm for sure going to try to large amounts of it which, sadly, means not eating out often. Applebee's and Taco Bell were two places suspected of using a lot of MSG and I have noticed I sometimes feel yucky after eating there, even when I have something relatively healthy at Applebee's.

Below is the list of the hidden names of MSG that contain the highest amounts. I recognize a lot of ingredients on products that I thought to be safe!

MSG	Gelatin	Calcium Caseinate
Monosodium glutamate	Hydrolyzed Vegetable Protein (HVP)	Textured Protein
Monopotassium glutamate	Hydrolyzed Plant Protein (HPP)	Yeast Extract
Glutamate	Autolyzed Plant Protein	Yeast food or nutrient
Glutamic Acid	Sodium Caseinate	Autolyzed Yeast
Vegetable Protein Extract	Senomyx (wheat extract labeled as artificial flavor)

What about you? Do you noticed reactions to aspartame and MSG? How do they affect you?

This Rollercoaster called Fibromyalgia...........or is it just life???

2010-10-12T22:42:00.002-04:00

Sometimes I wonder if all that I go through is mostly from the fibromyalgia or if it is just life itself. I mean I never really have "highs" but my lows are pretty far down there. Sure, depression is a part of it. How can it not be when you feel like crap all the time? But there's more to it than that. So much more. For example, some days I can get out of bed, walk to the living room or kitchen, study a little maybe or just chill out. Other days I'm in so much pain that I can't EVEN get out of bed and if I do make it to another room, that's as far as I'm going for the rest of the day. Pain is my main reason for these issues. It's relentless, unyielding and downright heartbreaking. I realize that "if I'd just exercise more I'd feel better altogether", but that's a heck of a lot easier said than done. Especially when you can't move because of the horrible pain you're ALREADY in. Don't even get me started on the pain I feel when I do exercise. Well I say exercise, it's really nothing more than stretching or walking. And most of my walking is done at places that are air conditioned like Walmart or the mall. Who am I kidding.........I can't go to the mall and walk, my back is far too bad for that. So I walk in Walmart as far as I can and then have to get a scooter to take me out of the store and to the car.
But is any of this actually caused from the fibro? I mean would I be in this condition even if I DIDN'T have fibromyalgia? I guess we'll never know because it's not like I can get rid of any of the conditions I have. Fibro, AS, Sjrogens, Back pain, etc., etc., etc..........
I wish I could snap a finger and everything be ok again. Oh that's right..........it's never been ok. I've always had these symptoms, just not this bad. For those of you who suffer right along there with me, I feel your pain..........quite literally! I feel so bad for those people who say that their worst symptom is the fibro fog. I really do. It's horrible. But sometimes I wish that my fibro fog would block my pain. Instead it's as if I'm lost in a mindless, worthless issuance of pain from head to toe and deep within to my Psyche. What to do? What to do?
Am I ever positive? Rarely I believe. And I ramble on and on, don't I? Well, I'll just blame it on the fibromyalgia.........again! But sad to say, it's probably the true cause.
I'll never give up though. I've got too much that I want to accomplish somehow. Even if it's just from my bedroom or recliner. How's the saying go, "What doesn't kill us, only makes us stronger!"

Fighting the Fibrofog

2010-08-10T19:41:00.000-04:00

Warning: This post is sure to fairly incoherent because I am under the influence of fibrofog today.

Out of the awful trio of categories of fibromyalgia symptoms (pain, fatigue and fibrofog), I'd have to say that the fibrofog is the one I hate the most. Even if I'm tired and/or in pain, I still feel like myself. Not so with the fibrofog. I feel totally disconnected from myself and everyone and everything else. Severe fog days are the worst days I have. I absolutely hate feeling this way. I find it hard to believe that people take drugs wanting to feel like they are drifting outside of themselves like this. I think it's an awful feeling, one I would go to great lengths to avoid if I knew how.

What makes it even worse is that I haven't found a single thing to help with it. Once I have it, the day is shot for me. Nothing I do seems to make it any better. Sometimes, it seems to lift a little bit after dark but maybe it just seems that way because by that time I've given up on trying to do anything. At least with pain I can take a pain reliever or sit on the heating pad. With fatigue, I can rest. Nothing seems to lessen the fog.

I've also been unable to figure out what triggers it, for the most part. Flareups with pain and fatigue usually follow a weather change, a day of overdoing it or a time of stress. Sometimes these flareups have fog and sometimes they don't.

Sadly, almost all advice for fighting fibrofog consists of tips on living with it and dealing with it, not preventing it or making it go away. A google search of "how to combat fibrofog" turned up a whole page of posts almost identical to this one: http://www.fibromyalgia-symptoms.org/memory_tips.html Sure, these are good tips for living with it but I don't want to live with it. I want it to go away. Something causes it, therefore something must cure it.

The only thing I've discovered that consistently causes my fibrofog is sleeping in. (Although it's not the only cause - I have plenty of fog days even when I get up early) Sometimes I can get away with sleeping after 8:00 but not usually. Sleeping until 9:00 or later always causes a bout of fibrofog for me. Cloudy days in summer are another thing that triggers fibrofog, which may be because I sleep later than I normally would because it's so dark out. I know, there's an easy fix for that - set my alarm clock! And that I will be doing more religiously for the remainder of the summer. I do not want another day like this one.

How about you? Have you discovered any triggers or helps for fibrofog?

This Gives Me a Little Hope

2010-08-06T23:43:00.000-04:00

Dr. Oz and Oprah are talking about fibromyalgia! That has to be a good thing, right? So many people don't believe any health info they get unless it comes from Oprah or Dr. Oz, so maybe this will help convince some of those doubters that think this is all in our heads.

You can listen to Dr. Oz's interview with Dr. Jacob Teitelbaum right here and you can click the links listed below to read more short articles by Dr. Oz.

I was hoping for some suggestions of things to try right now because I am dead-ass tired, despite my B-12 and CoQ10 supplementation. But, alas, there wasn't anything of that nature in the articles or the interview. But what listening to the interview and reading the articles did give me is hope. Dr. Jacob Teitelbaum believes there will be a test for fibromyalgia within a few years and that treatments will follow. How great would that be?

Dr. Oz talks about 4 treatments for fibromyalgia here.

There is more about treating fibro here.

And here's a link to Dr. Teitelbaum's book, From Fatigued to Fantastic, right here. I'm going to order it! I'm tired of fatigued.

Two Supplements for Increased Energy

2010-07-29T23:47:00.000-04:00

I am so tired of being tired.

Fatigue has been an on and off kind of thing for me for the past ten years. I go through spells of being very, very tired and spells of feeling pretty okay, as long as I don't overdo it. At least I used to. For the last year and a half my fatigue has been a constant (and most unwelcome) companion.

A few weeks ago I decided that I was so tired of being tired that I had to do something, try something. So I drug myself down the road to Fred Meyer's natural food section to find something, anything that would help with energy.

I came away with a bottle of CoQ10 gummy chews (gummies because that's what was on sale - CoQ10 can be a bit expensive) and a packet of Healthy To Go Acai Energy drink packets:

The combination has helped me some. I'm definitely functioning better than I was a month ago. The Acai Energy Boost drink has 500 mcg of vitamin B12 in it, so I'm thinking that's probably what helps with energy. It also tastes yummy and is sweetened with stevia - bonus! I've used CoQ10 before and I do think it helps and is worth trying, even if it is a bit spendy.

Also - I just ran across an article that talks about supplements to help with chronic fatigue syndrome. http://altmedicine.about.com/cs/conditionsatod/a/CFS.htm I might research and try some of these in the future because I am so tired of being tired.

Have you found anything that helps boost your energy? If so, share!

Do Any of These Foods Bother You?

2010-07-06T22:44:00.000-04:00

I just read an on WebMD about which five foods someone with fibromyalgia should avoid. (The link is below) I've previously heard that these foods should be avoided but the only one I've noticed causing a flare is aspartame, or any kind of artificial sweetener. My pain usually is centered around the trigger points in my muscles but, if I eat anything with an artificial sweetener, I get a headache and horrible "phantom" pains that feel like they are in my bones.

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-the-diet-connection?ecd=wnl_fib_070610

What about you? Have you noticed any of these foods triggering a flare or worsening your symptoms?

On a different note, I apologize for not blogging for such a long time and promise to do better, even if I just write short entries. We're all researching and finding different things that help or hinder and we definitely need to share our findings with one another.

Judgment

2010-04-21T04:35:00.004-04:00

I am so fed up tonight that I could literally scream. And to be honest, it would probably help my blood pressure some if I did! So what am I so upset about? People. Non-understanding, judging people.

Now these people come from all walks of life. They are in the grocery stores; at the parks; at church; and unfortunately for me, even in our families. My doctor calls such people Idiots and after what I've been through in the last 10 years or so, I would have to agree. Some are so, simply because they were never taught to be courteous or caring. Others were taught, but they just choose to think that God came down at some point and crowned them King of all judgment upon the human race.

You may ask, "What are these people judging you for?" Well, actually for everything and everyone in the universe, but more specifically to me, my disabilities caused by my illnesses of Fibromyalgia, Osteoarthritis, Sjrogens, Ankylosing Spondylosis and Depression. These are not all of my diagnosis', but are the most troublesome. I have been disabled by my illnesses for about 10 years now. I have suffered from them for much longer, but not until 10 years ago did it reach the level by which I could no longer function at work, home, church, etc... I went from being an energetic, bright, positive person in every aspect of my life, to one who can barely function in some of life's basest needs such as grooming, shopping, maintaining a household and working a public job.

I get judged from people at the grocery store because I have to park in the handicapped spaces, for which I do have a handicapped tag., and also for using the motorized scooters in the stores because I cannot walk or stand for longer than 10 minutes. I will literally fall in the floor due to the pain and numbness in my back and legs. These judgments are apparently based on their assumption that I am not REALLY sick or disabled because I look like a healthy 41 year old woman on the outside. (although this is gradually changing and I'm looking worse every day from the stresses of such illnesses).

I am also judged by people at church too. Usually because they will want me to participate in some function at church and I will decline. This may partially be my fault though because I usually just give a vague explanation of why I cannot participate rather than telling them outright that my body is broken and I cannot withstand the pressures of taking on such a cause. For example, I refuse to keep the nursery at church because children really make me nervous (I have anxiety issues for which I receive medical treatment) and ALWAYS give me a migraine headache because of the noise. I simply do not wish to be in charge of taking care of helpless children while I feel helpless myself once my symptoms start. Another such example would be singing in the choir. Now in some churches this is not a job that you are tied to, but rather a carefree thing that you do on Sundays. If you miss a lot, it's still OK. But in a lot of the churches that I have been in, it is like an occupation! Choir comes before EVERYTHING else in your life. But seriously, you are expected to be at every practice, definitely every performance and sometimes even traveling is required. As much as I love to sing in the church choir, I cannot guarantee that I'll even be able to make it to church every Sunday, let alone give a performance. Many days I spend in bed. All day. And it's not just on Sundays. So I don't think that I can comfortably make a COMMITMENT to be in the church choir under these requirements. I am not against the requirements, but I'm simply not up to the challenge and I don't think it's right to agree to the terms if you know you cannot keep them.

The last category of judgmental people I have to deal with is by far the most painful. They are my friends and family. These are the people who are supposed to love you unconditionally, but they don't. They love you when you fit into their plans, but not when you are unable to go out to lunch with them or go shopping with them or attend a 50th birthday party because you are laid up in bed and have been there for a week. Here again, it is all in how you are perceived by these people. They view you as the healthy, vital, carefree person you were in an earlier life. They don't see the days that you need your husband to wash and comb your hair because the fatigue is so great you cannot do it yourself. They don't see when you need help getting dressed. They don't understand why you can't bring a covered dish to the Christmas Dinner, or why you can't even come to the Christmas dinner, which is a 4 hour round trip drive, because you can't stand up long enough to cook. You can't remember how to make the dish, even with the recipe right in front of you, because you cannot comprehend the words on the recipe! Fibro Fog is an ugly thing!
These people, friends and family, get mad when you are simply too exhausted to drive out of town to meet them at a restaurant to eat. I've personally had to cancel such excursions so many times that now I will not even agree to go. They don't see that I'd LOVE to go with them, but I simply cannot. What's wrong with them coming to YOU once in a while? Why can't they drive to your house and order a pizza while you watch your favorite movies together? Why can't they EVER be the ones to sacrifice a little? Just because I'm the one who moved away doesn't mean that I should always be the one to make the sacrifice. I mean, am I being punished for moving away with my husband to start a better life for ourselves? I mean, come on.........it's the same distance for me to drive as it is for them! I love my family dearly, but they have shunned me for these very things. How my heart breaks each time I see them because I'm judged for something else I did or didn't do as they wanted it to be. I love my family, I really do, but because of some of their actions, I have been advised, by many people, but especially by my physicians, to simply stay away from them and drop all contact for a while. It just hurts me more and more , both emotionally and physically, each time something like this happens. Stress is a killer.

So what am I going to do about all this judgment? Try my best to just ignore the "Idiots" I come in contact with, Love my family and "so-called" friends, but limit my contact with them. And in the meantime try to find some support groups for just these types of issues. It's time I started taking care of myself, not everyone else. I can only do what I can physically and emotionally do and everything else has to go by the way side. If you're truly my friend, you'll stick by me. If you're really a family member who loves me, you'll wait on me, come to me, or meet me half-way. You'll be understanding or at least have empathy. Maybe you can't understand, but sometimes you just HAVE to believe a person at their word!

Do any of my Fibro and Arthritis friends out there have similar problems? If so, please let me know. My prayers are with you all.

The Loss is Great, but Life Goes On........

2010-02-16T00:43:00.003-05:00

On my last blog I explained that my Mother had been diagnosed with a terminal illness and given roughly 6 mos- 1 yr to live. Well, God's plans were not the same as the doctors. My mother went home to be with the Lord Jesus Christ on Friday February 5th. This was just 2 days prior to her 73rd birthday.

I am in shock and dismay, yet there's a sweet peace that floods my heart and soul. I miss her terribly and wish she were still with me, but not at the cost of having to be so sick and dependent on others for the most basic of needs. Yes, God answered my prayer in that He did not let her suffer and took her home before the suffering would have begun. From the day the family was given the diagnosis and prognosis, to the day she died was only 2 weeks. I am thankful for that. It was long enough for her to perfect her plans, say her goodbyes and I love you's and then curl up in the arms of Jesus. She worked tirelessly, planning her funeral, dividing her estate that wasn't mentioned already in the will, saying I LOVE YOU's in her own little way. She was such a great Mom. We didn't always see eye to eye on things, but she never judged me for a difference of opinion. She raised me to be strong, loving my family and above all loving my God, Jesus Christ.

I am having a very difficult time moving forward. And I'm now convinced that stress and emotional suffering play a VERY big part in my Fibro pain and symptoms. I've never been in so much pain in my entire life, as far as fibro pain is concerned. But ever so slowly I see a light at the end of the tunnel. The pain for me is simply that I miss her being here with me. Yet I wouldn't want her to come back for anything in the world because she is where her life's journey was supposed to take her, Heaven. To be honest I'm just the slightest bit jealous of her as she is now in her NEW Perfect Body. Never to suffer grief or pain, never to cry or shed a tear. I wish I could have that perfect body too. But Mama suffered her fair share in the 72 years she lived on this earth, it's her turn now to LIVE IT UP, Heaven style!

Now that she's in Heaven, it's time for me to take up her mantle and start living the life God , and Mama, want me to live. Just living for Jesus ever second of every day. I know I will still fail along the way, but God didn't make me a quitter and neither did my Mama. It would be awesome to please them both, but 1st and foremost is to please my Saviour who gave His all for me. He did suffer in death, as He did in life, but He did it all for me and for you. I love Him and I love Mama for introducing me to Him.

What I'm trying to say is that my loss of Mama is GREAT/HUGE/OVERWHELMING, but she wouldn't want me to grieve forever over her. She would want me to enjoy life, live for Jesus and love my family and friends in the process. She was a great lady who loved all that life gave her. She didn't waste time moping around, saddened over what bad thing was happening in her life at the moment. Instead she embraced it and made out of it whatever she could. She made lots of lemonade over the years. I will miss you fair lady of grace, but I shall strive to be the example you gave me.

I love you forever and always. Thank you for everything. I shall see you soon, when the Lord comes for me and our family as well. Goodbye for now.

Putting Things Into Perspective

2010-01-28T23:38:00.003-05:00

Not so very long ago, it seems I was being given my 1st diagnosis of fibromyalgia and chronic fatigue syndrome. Of depression, high blood pressure, cluster and migraine headaches............of polycystic ovarian syndrome and the list just goes on and on. From the very first mention of these illnesses I had felt like it was the end of the world at least the end of MY world. I've continuously pondered what my life was going to be like with the illnesses short term and long term. I've went through all the stages with each new diagnosis, trying my best to just get to the acceptance part of my life as I grieve it's loss.

On Tuesday of last week, something happened that has helped me put my life, with all it's illnesses, into perspective like nothing else ever has or ever will do again. My Mother was diagnosed with Idiopathic Pulmonary Fibrosis, which is a terminal disease, and advised she has roughly 6 months to 1 year to live, barring the miraculous hand of God. All of a sudden I don't notice the pain in my back and legs and neck and arms now because I can't feel them over the pain in my heart. I'm sure at some point the numbness will wear off and I will once again be caught up in my self administrations, but for now I can only feel the sharp pain in the vicinity where my heart once took up residence.

A lot of people would say that my Mom has led a full life and has no regrets, which I believe to be true. However it is not for her loss that I grieve, but my own. I have a 6 year old daughter that I wonder how I'm going to raise without the wisdom of my Mother. Who do I go to for advice now? And Christmas just won't be the same without Mama's Fudge Pound Cake! How will we fill the void that she is going to leave?

All that I truly know now is that she is suffering more than I've ever suffered with my own illnesses. All her independence is gone and she is totally dependent on others now for her most basic of needs. I do not wish her to have to spend 6 months like this. I pray that God will be merciful and take her quickly so that she does not have to suffer so.

I've finally found something that causes more pain than that of Fibromyalgia............the loss of my Mother's freedom, personality and life. And this is so very painful that only God's peace can give relief. No amount of pain medicine will help this ailment. Only trusting in my Lord and Saviour, which is also my Mother's, will give me Peace in knowing that she will be in a much better place where there is no pain or sorrow ever again.

So in hindsight now I know that I CAN get through this illness called fibromyalgia, Because if I can get through the loss of my Mother, I can get through anything. She's my best friend, my confidant, my advisor. For many years she was my teacher, my doctor and nurse, my seamstress, dietitian, taxi driver, etc.... You name it and she filled the need for me. I'm going to miss her so much. I already do miss her. Her vibrant spirit and strong will. But I know there is a life BEYOND this life where she will be free and unencumbered by this earthly shell of a body.

Here in this life, she has been my prayer warrior to God regarding my illnesses. She has asked for strength and grace to bear my burdens and even for healing. And God has answered many of these prayers with a yes. I know once she leaves this world she will still be praying for me, but from now on she will be able to ask God in person to help me through each day. Fibromyalgia has no hold on me. Nor any of my other illnesses for one day I shall be with my mother again and neither of us will be sick any more. We will have blessed perfect bodies and there'll be no more pain or suffering.

I thank God for helping me Put Things Into Perspective!

Pain meds - necessary and toxic?

2009-12-11T18:04:00.000-05:00

I received some disturbing news from my doctor's office today: my liver count is high. And since I don't drink alcoholic beverages at all, this little problem is undoubtedly being caused by taking pain meds that are formulated with acetaminophen.

I knew taking acetaminophen products could be harmful to the liver but I didn't think I took enough of them to have to worry about it. But, over the last few months, pain meds have become a lot more necessary. Excedrin Migraine helps best for migraine headaches, Tramadol works pretty well for my afternoon body aches and the occasional Hydrocodone helps take the edge off my severe pain. All of these meds contain acetaminophen and I guess I've been taking enough of them to affect my liver, even though I never take two different kinds of pain meds on the same day and I rarely take more than one dose a day.

My doctor said I need to come back in a month to have my liver count checked again and, if it's still high, they will have to run more tests. She also said I don't have to completely stop taking my pain meds but I should take them only when necessary. Um, hello! I DO only take them when necessary. I'm very conservative about taking medications. But the past few months have been really rough and I have been taking a lot more than normal just to get by.

This news couldn't come at a worse time. December is the month that is the hardest for me to get through. I always have a flare when the seasons change and December is when we usually get our first wintry weather (and this year is definitely no exception - we've had daytime highs in the 20's all week). Add to this all the stress and busyness of the holidays and I can barely get through, even with pain meds.

When I see the doctor next month, I will insist she looks in to some of the new pain meds they are coming out with for chronic pain patients. And in the meantime....????? I honestly don't know how to get through the shopping, cooking and socializing of the holidays without quite a bit of pain medication.

Fibro and Massage

2009-12-10T19:22:00.000-05:00

Massage is supposed to be a positive experience, right? I used to think so anyway. Sometimes, when I have a lot of muscle tension or painful trigger points, it's not the most pleasant experience but I always used to feel better afterward. Now? Not so much. At least not in the hours right after the massage.

For the last nine months or so, I feel very depressed after getting a massage, to the point where I just want to sit and cry. I have no idea what I want to cry about, I just feel really sad. And, I find myself reaching for comfort food, which isn't something I don't do all that often.

I had a massage about 1:00 today and I've been feeling sad ever since, even though I felt pretty happy before. I wonder what causes this?

One theory about fibromyalgia is that people store unresolved emotions in the tissues of their body. My massage experience makes me wonder if this could be part of the picture. Massage detoxifies the body and releases toxins, it makes sense (to me) that it could also release emotional toxins.

I'm not sure what to do about this except drink extra fluids and take sea salt baths to help flush out the toxins. Massage does help me. If I go longer than a month without a massage I have more trouble with my arms and shoulders aching and my hands falling asleep at night. And just letting everything build up wouldn't be good either. When it comes to toxins, emotional or otherwise, I think of what Shrek says about gas, "better out than in, I say!"

Yes, I figure it's best to get all the pesky, troublesome toxins and emotions out, even it's temporarily uncomfortable. But that's probably because I do get a massage every month. If I hadn't had a massage for a long period of time, I would feel very apprehensive about how it might affect me. My very first massage caused the worst flare of my entire life. It was that flare that made me sick enough to get diagnosed with fibromyalgia. It was seven years ago but I still remember how miserable I was and how hard it was just to stay awake to watch my kids. At the time, if I would have made the connection to massage, I wouldn't have had the courage to get another one. Lucky for me, my second massage a couple of years later didn't bother me as much and they've just kept getting easier since them. Well, except for this weird emotional garbage I'm dealing with now.

What are your thoughts? Are you able to get massages? What happens when you do?

*While writing this, I realized I'm also getting a migraine. I don't know if it's related to the massage but I'm pretty sure it's affecting my ability to type and use language. Please forgive any errors or lack of coherence!

WHAT DOES CHRISTMAS MEAN TO ME?

2009-12-09T00:18:00.003-05:00

What does Christmas mean to me, Is it lights upon the tree

Sharing presents with friends and family,

Is it snow falling down, On a Winter's morn

Reading postcards from those far from home.............

Cho. -

No it's Heaven coming down, Glory all around

The angels singing, "Glory to the King"

A baby being born, GOD in human form

The blessed Messiah, come to redeem this world

What does Christmas mean to me, Is it having company

Carolers singing in perfect harmony,

Is it shopping in the malls, Buying gifts for one and all

Waiting in wonder to see Santa Clause..................

Cho. -

No it's Heaven coming down, Glory all around

The angels singing, "Glory to the King"

A baby being born, GOD in human form

The blessed Messiah, come to redeem this world

Repeat Chorus

Tag-

Yes the Blessed Messiah come to redeem MY world.

Merry Christmas!

2009-12-07T10:36:00.002-05:00

I just wanted to say a Very Merry Christmas to all our Fibro Friends out there. I'm sorry it's been a while since I've blogged. I've had a lot on my plate.
The holidays are hard enough on us with fibro without other problems getting in the way, but I've really had a handful of things going on.
First, my daughter has been sick...........forever! She gets over one illness and then has something else. She is only 5, will be 6 in January. She had pnumonia 3 months ago and has stayed sick almost ever since. She caught the flu and was sick for 2 weeks with it. Before that she had a sinus infection And now she has some other upper respiratory virus. Poor baby! And as much as I enjoy taking care of her, this is getting very tedious. I'm worn out~
ON top of that, both of my parent have bad cases of pneumonia. My Dad was in the hospital for almost 2 weeks and now has been transferred to a nursing home because my Mom can't take care of him and there's no one else who can. It's not that I and my siblings don't want to, we just aren't able to take care of him 24 hrs a day. At this point, he's so weak he can barely walk. They will be doing rehab at the nursing home to strengthen him and hopefully he will be able to come back home in a few weeks. It all depends on how much he works while he is there.
And then my mother is sick with pneumonia as well. She's on her 3rd round of antibiotics. Hopefully this last round is helping. She seems to be getting a little bit better now. Praise the Lord.
On top of all of this, I've been in a major flare with my fibromyalgia and arthritis. I just feel like sitting around and crying, but I can't because it will cause a migraine (which I also have had yesterday and today!).
So what do I have to be saying, Merry Christmas, about? Well, because God is still good and He is still faithful. Throughout this entire ordeal, He has been with me every step of the way. Giving me courage and strength to go on. I love Him so much, but my love for Him can't even begin to compare to His love for me. HE is the reason I celebrate Christmas.
So I wish you all a very Merry Christmas and Happy Holidays and say a prayer for all our fibro friends that God will make your Christmas merry and bright as well.
Love to all,
Teresa

Christmas decorations in November!

2009-11-09T02:36:00.002-05:00

For those of you who know me, this will not come as much of a shock, but I started putting my Christmas decorations up the day after Halloween. Most people think, well, they think I'm nuts! (I don't know if I could prove them wrong.) However, I have very good reasons for starting so early, of which I'm going to share with you.

Christmas is my favorite time of year. I love everything about it........even the shopping! I look forward to it all year long. I start listening to Christmas music in July. Why am I so crazy about the holiday? Well, it's just always been very special to me. A time when you forgot all the bad things that were going on in your life and focused on someone other than yourself. I love Christmas not for what I can get, but for what I can give. No matter how poor you are, you can give something, especially LOVE~

But my reasons for starting so early in the year are not strictly based on a fondness for the holiday and what it holds. As I have aged, my health has steadily went downhill. I suffer with fibromyalgia, arthritis and a host of other related illnesses, but I vowed a long time ago to not let this turn me into a scrooge during this beloved time of year. It also helps that I have a 5 year old daughter who loves the holidays as much as I do at the ripe old age of 41. She makes me old and keeps me young all at the same time. Basically, because of my illnesses, I am unable to perform tasks in a timely manner. It takes me forever to do something because I have to keep stopping to rest. And sometimes this might mean resting for days on end. Sometimes the simpliest of tasks can literally put me in bed. That is the #1 reason that I start so early on my decorations (as well as shopping). Plus, I like to decorate a LOT! Not just a tree in the window and a wreath on the door for me! No, I want the whole house to celebrate Christmas so I decorate a bit in every room. My basic task list includes:
Christmas tree in the big window; Miniature lighted Christmas village (in the same room); Decorated mantle and fireplace; Lights and ribbon on the stair bannisters; The ARCH of Christmas cards; Christmas china & crystal in the dining room; Snowman collection; small Christmas tree in my daughter's room; Christmas bedding; Christmas towels and toiletries in the bathrooms; OUTSIDE lights, including stair bannisters, hedges, walkway, my lighted polar bear and deer on the lawn.

And OF COURSE before any of these things can even BEGIN, cleaning has to be done. Now, I am not a cleaner by nature. I don't usually mind if everything isn't in it's place.......except at Christmastime. I want everything perfect then. Unfortunately, my body does not cooperate with my schedule of decoration and cleaning. I have great difficulty bending and kneeling, climbing and stooping, twisting and reaching, etc.......... All of which are required in both decorating and cleaning. So it takes me a while to actually get all of this work accomplished. I have to stop and rest often and as I said earlier, this may be for several days at a time. If I overdo it, which is SO easy to do without even knowing it, I end up in bed for several days. And I'll be darned if I am going to put all this work into the house just to look at it for 2 weeks!!!! It takes me longer than that to put it all up! In all seriousness, it takes me about 3 weeks to complete all my decorating for the holidays. So I start the day, or weekend, after Halloween and continue working until it's complete, which is just about time for Thanksgiving. By then, everyone else has started putting their holiday decor up and I don't feel so alone!!

In short, I start so early because it takes me so long to get it all done. And I do it all just because it makes me happy. It makes me feel good. It makes other people feel good, even if they do think I'm crazy!! I deal with moderate to severe pain on regular , daily basis and not much helps it. But at this time of the year I get natural "feel good" endorphines just from looking around my house, Seeing a grin on my daughter's face and watching her wonder what's under the Christmas tree. Do I really need a better reason than that?

As a side note I would like to update you on my health status. As many of you know I have been having episodes of falling asleep during the day, during activity even, and having a very difficult time coming out of it. This has been going on about 1 1/2 months now. It makes driving almost impossible. My new neurologist started me on the drug Neurontin for my migraines. For some reason this has made the sleeping issue better. I spoke with the dr on Friday of last week and he has ordered a sleep study, still to be scheduled, for me. He feels that the sleeping episodes could be 1 of 3 diagnosis: Sleep Apnea, Narcolepsy, or Epilepsy. He also felt that I may have possibly been having mild seizures during these episodes, especially since they seem to have gotten better once I started taking the neurontin. I have 2 siblings with epilepsy.
Please pray for me that the doctors will get an accurate diagnosis and plan of treatment. I really do not need to lose my drivers license! I am praying that I will not have any of these diagnosis, that GOD will heal me, but if not I pray that I will have the simpliest to manage illness. I know that this sounds rather selfish of me, but I'm mainly thinking of the responsibilities that I have on me and how this would be hindered if I get a bad diagnosis or if suitable treatment is not found.

Thank you for all your thoughts and prayers and may you have a blessed Thanksgiving and Christmas season!

Should I Try It??????

2009-10-27T01:09:00.002-04:00

It seems every day somebody else is running into me or emailing me with the latest miracle cure for fibromyalgia. Just drink this 3 times a day..........just do that 5 times a week. The latest is a miracle doctor who provides specialized care for over 20 different illnesses! NO drugs, no adjustments, no therapy.........the only problem I found with their website is that they couldn't tell me exactly what it is they DO do? I have a friend who referred me there, who has fibro also, who swears by the treatment, but she also couldn't tell me what the treatment was!

Then I have another friend who has just started the latest miracle cure all drink and she wants me to try it. It's, of course, all natural, no drugs involved. Helps the body heal itself! But once again, they can't tell me exactly what it is that the stuff does.

These alternative treatments are NOT cheap, nor are they covered under insurance or medicare.
Don't get me wrong....I KNOW my friends are only trying to help me. They see me suffering with this horrible thing called fibromyalgia and they want to help. They've tried something that they think has made them feel better, so surely it would work for me as well. I mean, what have I got to lose? I'm miserable now, if it fails I will still just be miserable. At least it's worth a shot, right?

What they don't realize is that I've already tried almost everything out there under the sun at least once. Rarely are there actually new treatments. They're just the same old ones remodeled to look like the latest and greatest cure all. I've tried all the scientific treatments that I know of. I've tried all the alternative treatments that I know of. I've tried everything you could possibly think of that's out there, whether covered by insurance or not and the conclusion I've come to is that nothing is going to cure me because they don't even know why I'm sick! The things that have helped me, I've stuck with. Unfortunately, it is true that these are just "band aids", if you will, and aren't actually helping me get better, but rather just treat the symptoms. As far as I can tell, that's the best that technology has to offer me at this juncture of life.

So when someone, especially great friends, come up to me and want me to try the latest and greatest treatments, please don't get mad at me if I don't immediately run out and buy it or book an appointment. Don't be upset that I'm skeptical. Don't write me off as "not wanting to get better" just because I don't try it. Because frankly I'm tired, just tired of being poked and prodded and used as a guinea pig for every new therapy that comes along. I'm heartbroken and discouraged that there's NOTHING to actually treat my illness and the illnesses that come along with it. Don't write me off.........I'm not trying to be difficult, I'm just being realistic.

So that leaves me with the age old question.........Should I try it? What do YOU think?? Seriously, What DO you think? I want to know.

Teresa

Things that help me feel better - parts 2 & 3

2009-10-23T20:59:00.000-04:00

I bought this little comfort item at Walgreens almost two years ago and I can't imagine life without it now.

In case you can't tell from the picture (which I realize is totally unnecessary but I like taking pictures of stuff), this is a Homedics shiatsu massage pillow. It has two rotating heads (I guess that's what they're called) that also heat up. The great thing about this massage tool is that you can place the heads right on the spot that's giving you trouble, unlike those chair massage things that only cover a strip down your back.

This pillow works great to massage and relax the muscles in my mid back and it really digs into my trigger point areas. It's a total lifesaver when my back is tight and hurting and when my trigger points are acting up. I use this pillow almost every day and there have been many times that I would never have made it through cooking dinner without spending a few minutes with this pillow.

A couple notes of caution: If you leave it plugged in, it stays warm, which I find a bit disturbing. Also, if you are really tender to the touch, this might be too rough for you. The heads stick out quite a ways and they are rather hard.

Another comfort item that I couldn't live without is a big styrofoam cylinder that I bought from my chiropractor. He called it a myofascial trigger point release...Hmmm, I seem to have forgotten the last word but, boy, does it feel good on my trigger points.

It looks like this:

You place it on the floor and then roll on it, spending time on any spots that hurt or feel tight. I think it really does help to release the tension in my trigger points and it definitely works out tension in my back.

It's pretty firm, so if you are really tender it might be too hard. I saw something like it in the yoga/pilates section of Target, so you could always sample it there to see if it would be comfortable for you.

Things that help me feel better - part 1

2009-10-22T22:48:00.000-04:00

I really liked Teresa's 20 Things That Make Me Feel Better on Bad Pain Days post and wanted to do one of my own. But, as often happens with my fibro, I feel overwhelmed by the simplest of tasks and don't feel capable of sitting down and writing about 20 things. Or even 10, for that matter. So, I decided I'd write about each individually.

The first is a wonderful thing I discovered while waiting for a prescription at Bartell Drugs:

Dr. Teal's Epsom Salt Soaking Solution is regular old Epsom salts with eucalyptus and spearmint essential oils added to them. I'm not a big fan of spearmint or eucalyptus but in this, they smell really good. Putting two cups of these salts in my tub downstairs fills my whole house with a delightful aroma.

According to my book on essential oils, eucalyptus oil is good for muscular aches and pains, headaches, sluggishness and mental exhaustion, all common symptoms of fibromyalgia. Spearmint is good for improving one's mood and focus. What fibro patient couldn't use that?

I do feel an improvement in my aches and pains after soaking in these salts, at least for a few hours afterward. I've decided to commit to at least two salt soaks per week to help relax my muscles and detoxify my body.

To read about the health benefits of a salt soak, this article, Treat Yourself to Thalassotherapy at Home, is pretty interesting. After reading it, I'm thinking I should use sea salts, at least part of the time, because of their higher mineral content. But I'm still going to keep a bag of Dr. Teal's Epsom Salts around because they smell so good. Soaking in them is truly a treat.

When Is It Enough?

2009-10-20T23:10:00.003-04:00

I tend to try to be positive to the outside world, even though I'm a negative person by habit, but I must admit I don't feel much to be positive about tonight. I've had a very bad day cognitively. Physically, I was much better. It was a good day even. But my brain has been MIA.

First, I slept through the alarm clock, again, today. My daughter had to repeatedly call me to wake up. She's only 5! After I finally woke up things seemed to go smoothly. We both dressed, ate breakfast (which usually NEVER happens) and basically got ready for our day. I took her to kindergarten school at 9:00 am and proceeded to drive the additional 15 minutes to ToysRUs. There I waited for them to open (still awake) and soon went in. I was looking for Zhu Zhu Pets. They're the hottest toy right now. Or at least one of them and my daughter loves them. There are 9 hamsters in all and my daughter has 4 of them. She of course wants the other 5, which we are constantly searching for. Anyway, they were out, but I did manage to pick up some doll house furniture at Buy one Get one Free for her doll house for Christmas presents. That was a great deal.

I walked out to my car and remembered that I had to ship a package at the UPS store so I got in the car and proceeded to drive back in that direction. Up to this point I have acted like a normal person, which is extraordinary for me. I hadn't forgotten anything. No mishaps. Everything was just cruising along.
Until I saw the red light! What are you supposed to do at a red light? We all know the answer, right? Apparently not! Now I had shown no hint of fibrofog up to this point, but now it decides to kick in. As I approached the very busy intersection, with cars all around, my light turned red. I had PLENTY of time to stop. No stomping on the brakes was necessary. But for some strange reason my brain decides that it does not know what to do at a red light. I momentarily froze (although the car continued driving) What do I do? What am I supposed to do? Just as I pass under the red light, I decide to floor it. NOW my brain kicks in~ Ahhh, you were supposed to STOP at the red light! Thank God it was after school hours had begun, but before lunch time. I am sure I would have had a wreck if it had been any other time of day. But as it was, though busy, it wasn't hustling as at other times of the day. The other people seemed just as dazed and confused about what I did as I was because no one even honked a horn. Thankfully there were no police around. Although I am not sure whether there was a camera at that intersection or not, so I may end up with a driving ticket in the mail. Lord, I hope not!

After this fiasco I managed to regroup and finish driving to the UPS store. Nothing unusual happened there, but I decide to treat myself to breakfast (I fed Tabitha this morning, not myself) at Burger King. I love their Ham, Egg & Cheese Croissants. Anyway, that all goes smoothly and before going home I make the decision to stop at Walmart, just to check on the Zhu Zhu pets there. All out!! No surprise there, huh~ I did pick up a couple of things for Christmas gifts and some Halloween candy though.

I arrived home 2 1/2 hours after I had left this morning. Only to discover I had forgotten and left the TV set on. But that's no big deal, right? I mean that's not hurting anyone! Well I sit down and decide to answer some emails and do some other odds & ends on the computer. It's 11:15am so I've got 1 hr 45 min before I have to pick Tabitha up at school. I am feeling a little tired, but nothing major and my brain seems to have recuperated from the red light fiasco. I've already taken care of business on the computer so I decide to hunt a few eggs on FaceBook.

The next thing I know my husband is walking through the front door yelling "Where's Tabitha"! I have no idea and where did he come from? He doesn't get home until 2:15 pm. Well, as it turns out I had fallen asleep (again) in my recliner and totally slept through picking up my little girl at school. This is NOT the 1st time this has happened in the last month. Actually it's the 3rd time it's happened in that period. My husband grabs the keys, runs out the door to go pick her up and shouts at me to call the teacher/principal of the school to be sure Tabitha is OK and still there and that he's on his way to pick her up. After he left, I did call Mrs. Elaine (as the children call her) and apologized profusely, for which she kept saying not to worry about it. Everything is fine (she knows I am sick) and not to worry about. Of course, I totally break down on the phone and begin sobbing. How could I do such a thing? What is wrong with me? I am such a terrible mother. Seriously, I must be. And what makes it even worse is that my husband and Mrs. Elaine have both called me during this period. A total of 5 phone calls were made and messages left on the answering machine. The PHONE IS 12 INCHES FROM MY HEAD!!!!!!!! How did I not hear it? What is going on!!!!!

Now you may say that it's probably just some of my medicine that I'm taking. After all I am on about 12 meds right now. But as it turns out, my brain wasn't TOTALLY functioning early this morning because I forgot to take ANY of my meds. So I wasn't groggy from medicine. What's the deal?
(Before you go crazy wondering, Tabitha was fine, still at school. Having fun with Mrs. Elaine cutting pictures out of magazines. Turns out she's there until 3 pm every weekday. Thank God for Mrs. Elaine!)
After Tabitha got home from school I tried doing some more work on the computer but fell asleep again. I slept for 3 hours and my husband had to wake me for supper.

Maybe I used too many spoons this morning early. Maybe I wasn't having as good a day as I thought initially. I don't know. I just don't know. But I don't think this is normal, even for a person with fibromyalgia. I know that extreme fatigue is a symptom, but I'm scared something else is going on. The doctor had given me a prescription for Provigil which is to combat the fatigue, however my insurance won't pay for it. They denied it as it wasn't FDA approved for my condition they said. I don't know........I may have to just fork out the money and get this one anyway. It's $250.00 for a 30 day supply. There is not a generic for this and I don't think there is a substitute either.

Just when I thought I had a handle on this fibromyalgia thing, now I'm having additional symptoms that are quite frightening. What if I fell asleep while driving? I do it RIDING in the car all the time now. I do it while people are talking to me! I am not going to lie to you, I'm really scared right now. What if I have narcolepsy? My sister & brother has epilepsy. Isn't it a related condition? What am I going to do?

When is enough ENOUGH? I'm very weak and broken right now and I don't know if I can handle having another diagnosis. God is good to me, so good to me. I am thankful for all He's done and is doing through my illnesses. But I'm just not sure if I can handle having something else added to my list. I'm so tired: physically, mentally, emotionally, spiritually, etc....
I know that whatever happens, God will give me the grace to get through this, but I can't help but asking, "God, When is enough, enough?"

Please, Please, Please add me to your prayer list. I know this may be a small thing compared to what COULD be wrong with me, but it's a HUGE thing to me right now. Thanks for all your support!
Teresa

What kind of Pain am I in?

2009-10-11T21:48:00.003-04:00

I don't know what I'm going to write about tonight. I just know that I'm in so much pain I've got to do something to take my mind off of it, and this seemed like a good idea.

What kind of pain am I in? Oh you name it and it hurts. My whole body aches. Feels like I've been beat up. I'm so tender that even lying or sitting down hurts!
Even my shoulders are hurting. My left one (the bad one) feels just like it did when I tore it, but I haven't done anything but lay in bed and sit in my recliner. I've already had 2 surgeries on it, don't want a 3rd~
My knees are creaking and throbbing in pain. Again, this makes it very hard to walk. They even lock up on me.
And my ankles and feet are the very worst (but don't forget my hands and fingers!). I can't stand for my feet to be touched. Heat makes it worse and cold makes them cramp. I haven't tried a foot bath yet, that's next. Hope it helps. If my foot pain weren't so bad I MIGHT could deal with this. I'm a 10 on the pain scale. Actually an 11, but who's counting? If my feet were better I might be down to a 8 or 9. Oh the difference one digit makes!!!
My entire spine is in pain. Neck to sacral. AND I'm stiff. Like a board! I do have AS as well as fibro so that may be the reason I'm so stiff. But it's beyond ridiculous. I can't turn to save my life. Bending isn't much fun either. Going to the bathroom is a real adventure!
And to top it all off, I've got a headache. So I literally hurt from head to toe. Can it get any worse?
Glad you asked! Because YES it can. I'm not doing so great emotionally either. In fact I feel like taking the big plunge! I won't, I will never do that, by the grace of God. But I really FEEL like it.
I don't know how much more I can take. But there has to be a reason that I suffer. I don't think God lets people go thru this without a good reason. God is not cruel. I choose to think that He saw something in me that He knew I could bear this illness while still giving God the praise. I may not have just sounded like it, but that is my official stand on the subject. I do give God the praise and glory, even for this illness. Without it, I would have never known the JOY of a good day. Or being able to play with my little girl. I would have just continued to take all of these things for granted. I would have NEVER known what a real blessing they are. And I'd of never really experienced how comforting the Grace of God is. No matter how bad I'm hurting, or how down I am, God always takes care of me and He makes a difference in my life.

Soooo, I guess writing this did help me because I really am feeling better now. Praise God!

20 Things That Make Me Feel Better On Bad Pain Days

2009-10-05T23:32:00.005-04:00

What are some things that make me feel better on bad pain days?

1. My Electric Blanket (the warmth is such a comfort).
2. A big , soft hug from my daughter.
3. My Bed (it's softness, yet firm, is the most comfortable place to lay).
4. Prayer (GOD always provides peace and comfort and lets me know I'm not alone).
5. Stretching (it seems to warm up my muscles and tissues, providing relief).
6. A Card or Letter from a friend.
7. Writing in my diary or blog (it helps me get off my chest all the feelings that are bottling up).
8. Take-out Food (no cooking!)
9. Talking to a Friend.
10. Believe it or not, SOMETIMES, gentle sex! (It takes my mind off the pain and provides some feel-good endorphines).
11. Creating something - crafts, pics, poems, etc... (It again takes my mind off the pain and makes me feel useful again).
12. Reading an Inspirational or Fiction book (It takes my mind off the pain and transports me to a different place mentally).
13. Making plans for when I have a GOOD day (It gives me something to look forward to).
14. A Nap (Pain is very exhausting!)
15. Buying something (inexpensive) for MYSELF (usually online as I can't get out of the house).
16. Chocolate, just a little! (Chocolate makes everything better!!! jk)
17. A long hot bubble bath (being surrounded in warmth & sweet scents is so comforting).
18. A Massage (it actually releases feel good endorphines!)
19. My little girl giving me one of her stuffed animals to comfort me.
20. Being held by my hubby as I try to go to sleep.

Can you think of some things that make YOU feel better on your bad days? I'd love to hear from you and get some ideas.
I know that some days NOTHING is going to make me feel better, but I have to keep trying because I have to keep living. The moment I give up, I might as well be dead! Because there's nothing worse than living a life without HOPE.
Gentle hugs to you.

Odd Symptoms

2009-09-26T00:12:00.004-04:00

I have had fibromyalgia for many years now. I have been diagnosed for about 11 years, but suffered with it much, much longer. In addition to fibro I also have Ankylosing Spondylosis, IBS, PolyCystic Ovarian Syndrome, Sjrogens, Osteoarthritis, Migraine and Cluster headaches and God only knows what else!
Despite all of my diagnoses I still have symptoms that no one can seem to explain to me. The doctors tend to look at me like I'm crazy, so I've stopped mentioning them! I just wonder if other people with fibro have any of these same symptoms. Or even if there could be another diagnosis lurking out there?
I'm just going to list some of these weird symptoms and, frankly, wait to see if anyone responds.

Here goes:

1. Swelling of the hands and feet. Sometimes extreme swelling. I can't even make a fist with my hand. My fingers look like Miss Piggy! And very often one hand or foot is larger than the other. NOT always the left either.

2. Sudden Deafness and then Ringing in the ear. Usually just one ear, but occasionally this will occur in both ears at the same time. It starts with the deafness , then the ringing tone. It lasts between 20 seconds and 2 minutes. Then it's gone with nothing to show for it.

3. Extreme chest pain. More middle to left sided. It literally feels like I'm having a heart attack. However, my blood pressure and other vitals are perfect. This can last for hours at a time for days on end and then suddenly disappear. Sometimes however I'm left with the feeling of tenderness, as if my chest has been bruised from the inside out.

4. Complete numbness of my hands and arms, followed by tingling. I wake up like this every morning. If I sit with my arms resting for any period of time it will also occur. I am contributing this one to carpal and cubital tunnel syndrome. However , I am still baffled because I've already had the surgical release and nerve transposition done in the right arm and now I'm having these symptoms again??

5. Metal headaches. I name them so because I will get a strong metallic taste in my mouth when I experience one of these headaches. It is very severe, yet is not a migraine. Or at least not my usual ones. This can last from 2 to 12 hours. Pain medication will ease the headache a bit, not a lot, but nothing takes away the metallic taste.

6. Mid-thoracic back pain and tenderness. It feels much like the pain you experience in your back when you have a kidney infection, but it is located much higher on the back than the area of the kidneys. It actually is so sore that the entire area feels like it's bruised, but it is not. This does NOT go away, EVER. No pain medication or muscle relaxer has ever helped this pain.

7. Gnawing stomach pain that hurts from the front of my stomach all the way through to my back bone. NOTHING helps this except total submersion in heat. I have slept many a night in the bathtub with scalding water because it was the only way I could find any relief and the pain was so great that once I did find relief, I immediately fell asleep from pain exhaustion.

8. Sharp, burning, piercing, stabbing, throbbing, pin-pointed pain in various parts of my body. This is extremely painful. An 11 on a scale of 1 to 10. It stops you in your tracks. It can last for a couple of hours, but comes and goes in spurts of seconds at a time. There are no visible signs of any distress on the body part. This can be in a hand, foot, joint(ankle, etc..), breast, even my head. You can't walk on it, hold anything, put pressure on it.........NO USE of the effected area because the pain is so intense. It literally takes your breath away.

9. Pain in the bottom of my feet, as if they are severely bruised, yet they are not bruised at all. I literally cannot walk on my feet. I have resorted to walking on the sides of my feet when this pain strikes and it is occurring more & more frequently. This can last from hours to days at a time.

10. Swollen and sore lymph nodes/glands in my throat, causing sore throat and ear aches. This can last several days to a week at a time. Yet I don't have a cold or any type of congestion symptoms.

11. Twitching of my eyes. The eyelid will literally jerk or twitch. There is no pain associated with this, but I have noticed some blurred vision. Not sure if they are connected or not. This can go on for hours at a time.

12. Sensitivity to touch/feeling. I don't mean that I am sensitive for someone to touch me (although I am!!). What I mean this time is feeling textures. A rough woven piece of cloth, yarn, egg crate mattress pads........basically ANYTHING that is not smooth. It causes me the same irritation that some people experience when running fingernails down a chalkboard. This is an ever present irritation for me.

13. Hiccups! More and more lately I have been getting the hiccups and they are becoming harder and harder to get rid of. In fact, the only thing that works is for me is to completely hold my breath for 20 seconds and then exhale through my nose. Some days I get them 6 or 7 times in a day and they will continue until I do this breathing exercise.

14. Irritated and stuffy nose. This used to just been 1st thing in the morning or after I'd been lying down for several hours, but now it is constant. I can just barely breathe through my nose now. I don't have a cold and after a very painful series of allergy testings, I am declared to be allergy free! So what's the deal?

15. Bruising on my body, without me having hit or hurt it in any way. There is a possibility that I could hit it without knowing it and not notice the pain because I'm already in so much pain + on pain meds, or that I just forgot that I hurt it. But I really don't think either of these are true in my case. This happens at least once a week for me, probably more because I don't look at the back of my body very often.

16. Jerking in my sleep, or as I'm going to sleep. The doctors have diagnosed this as Restless Leg Syndrome. and this may very well be it because I don't know much about this ailment. However, it's not JUST my legs that jerk. It's my entire body.........ESPECIALLY my head. It will jerk from side to side, even when I'm not going to sleep. If I just get still and restful, my head will start jerking. I do get a kind of "irritated" feeling before it jerks sometimes, but often I have NO warning. This is both frightening and embarrassing.

17. Extremely dry, flaky skin all over my body. It does not itch. But if I do scratch it, I get white "ashy" marks where I scratched. Lotion does not help it very much either.

18. Dry, crusty , flat mole type patches of skin on my body. Usually brownish in color. These are generally small, 1/2 - 1 inch in diameter, but DO itch. And if scratched, they DO bleed. These do not come & go. They stay.......forever!

19. A very high illness/infection ratio. I stay sick! I have either a virus, sinus infection or bronchitis at least every 3 months. Usually more frequently. And once I'm sick, it takes me a while to get over it. Sometimes I have to take 3-4 rounds of different antibiotics before I get well.

20. Unusual cravings for food. And NO I'm not pregnant! I have dealt with these cravings since I was a little girl. In fact, I usually eat daily based on what I am craving. For example, one day last week I was dying for some sauerkraut. I haven't eaten the stuff in about 20 years! I crave beef before and during my cycle each month. And I crave lettuce or salads when I think I'm dehydrated. Many times it's weird stuff......like dill pickles & ketchup or vanilla soft serve w/french fries.

I have more weird symptoms than just these 20, but for sake of time I did not list everything. I realize I'm probably a freak! If you have an answer or suggestion about any of these, or if you deal with any of these yourself, please feel free to post or comment. Also, if you have any weird symptoms of your own, please list them also. It is my hope that I will find out that I'm not totally alone!!! LOL But also to find a reason or put a diagnosis with the dilemma!

Gentle Hugs to you all xxxxx
Teresa

My nervous system is fried

2009-09-23T21:38:00.000-04:00

What a wretched week it's been so far. I've been in so much pain. Yesterday, I was seriously starting to worry that I might need a cane to get around because of my hip. My hip is better today, for which I am very grateful. I didn't want to have to buy a cane.

But what isn't doing better is my nervous system. I'm going through one of those times where it seems like I have bionic hearing. Every noise seems super loud. And it feels like every nerve in my body is exposed and raw and vibrating to every noise. AND, it feels like every noise makes my chest feel tight and weird, like the center of my chest is a huge guitar string that gets plucked with every noise. It's driving me batty.

I was supposed to go to my son's curriculum night tonight. I should be leaving right now, actually. And I just can't do it. I can't be in a room with a bunch of people. My nerves can't take all that noise. Or the feeling of jumping out of my skin just because someone walks up beside me.

Of all the symptoms of a flare, the overactive nervous system is the hardest for me to take. My heart is pounding right now just because noise is driving me crazy. The kids have the TV on, cars are continuously driving by, my neighbors are getting their carpets cleaned by the Stanley Steemer truck and the sound is humming throughout my entire house. Etc, etc. There's so much noise. I can't get away from it.

So far, I haven't found anything that helps this. Sometimes, a small glass of wine can help numb it just a little bit temporarily. But other than that, I haven't found anything that helps. I didn't have one of these "episodes" the whole time I was on Elavil but I was so tired I was barely conscious for the three months I was on it, so that really isn't a viable solution.

Do you experience this? Have you found anything that helps?

What Is Wrong With That Woman?

2009-09-19T14:02:00.001-04:00

As Invisible Illness Week draws to a close, I can't help but be a little disappointed. I had hoped to be much more involved. But, alas, life didn't cooperate. The big monkey wrench in my plans to read and comment on tons of blogs and listen to blog talk radio was my laptop. It refused to go online for several days and my back can NOT take sitting in the computer chair downstairs. Neither can my arm, apparently. Every time I rested it on the desk, an electric shock feeling shot through my arm. That's a new one for me. *shrugs*

One of the things about the invisible nature of fibromyalgia that really bothers me is that I know people sometimes wonder what the heck is wrong with me. I look normal, I don't take any drugs or other substances that cloud my mind and yet, sometimes, I act really weird. It's the lousy fibrofog. Sometimes, I'm so out of it I don't even realize I'm doing anything strange until I see people staring at me with that "what is wrong with that woman?" look on their face. Often, I'm not even sure what I'm doing to attract their attention. Is it my glazed over eyes that won't focus on what's in front of me? My super slow reactions? My unsteady gait? I really don't know.

Other times, I'm aware that I'm having difficulties: Running my card through debit card machines becomes a major feat that requires all the focus I can muster. I can't figure out how to turn on the dishwasher and stand at the sink turning the water on and off. I just stand there, blankly staring at someone when they talk to me because my mind can't unravel the noises into language. Or, it takes me an eternity to even realize they are talking to me and that I should answer. I forget the words for things. I forget what I'm talking about right in the middle of talking about it. I forget what I'm doing right in the middle of doing it. I plan two things for the same day and don't even realize it until the day before when I suddenly realize I can't be in two places at once. I momentarily forget how to turn my lights or wipers on in my car...the list goes on and on.

And then there are the moments of complete and utter blankness that go on long enough to really freak me out. For example:

* The phone ran and I went over and opened the microwave door, then stood there confused about why the phone was still ringing.

* I was completely unable to work the debit card machine at Safeway and the checker had to come around the checkout and help me.

* My kids were locked out and knocking on the door. Instead of going downstairs to the door, I went to the light switch and started turning the light on and off. When I finally realized that wasn't working, I unbuttoned my pants.

* I got a phone call and this familiar male voice said, "Hey, Trisha. I'm home now." I just stood there trying to figure out who in the world would be calling me to tell me they were home. Finally, the perplexed voice said, "This is Chris." Still, I just stood there silently, going through the list of every Chris I'd ever known and wondering why any of them would be calling me to tell me they were home. Finally, the light bulb came on. It was my neighbor! The very neighbor who's kids were at my house waiting for their dad to come home. The very neighbor that I had talked to two hours before.

* A clerk asked for my phone number and I could NOT remember it. At all. We finally had to leave it blank on the paperwork.

Moments like this both embarrass and scare me. I hate feeling stupid and I don't like people thinking I'm on drugs or something. And those long moments of blankness are so scary. Just where is my mind? How can it just be gone? I read about one woman who forgot how to read. FOR A MONTH. Can you imagine? I'm terrified that my fibrofog will get that bad.

I've thought about shopping for a shirt that says "I'm not drunk, I have fibrofog!" What do you think? Good idea? Do you ever find people staring at you with the "what is wrong with that woman?" look on their face?

Mourning your lossES...........

2009-09-16T13:37:00.003-04:00

Before I start, I just want to say that I'm really feeling the effect of my fibro today. I'm in a lot of pain and the fibro fog is pretty serious, But I wanted to make this post today as it's been on my mind for several days now. So if anything doesn't make sense, feel free to ask questions......

Many times people (normal people) don't understand why we make such a big deal about having fibromyalgia, arthritis, etc..... whatever illness it is that has you down. The truth is they don't realize (and often even us sick people don't realize) how much of our life has been effected. A lot of times they think, OK, you're sick, so get on with your life already, but they have no idea just how much of our life has been taken away.

And for every part of our life that has been altered, we mourn it's loss. For example, not only am I sick and in pain 24 hours a day 365 days a year, I am also disabled from working. I really enjoyed working. I was a Workers Compensation Insurance Adjuster and I enjoyed helping people in need. So I not only mourn the loss of my health, I also mourn the loss of my job, my financial freedom, my independence........And the list goes on and on.

So people think, Oh, she doesn't work, she's got plenty of time to help us or do things with us, but therein comes my disability. I'm not only disabled from working a public job, but also from doing house hold chores and sometimes even to the extent of personal things. If I DID have the time to help, I don't have the ability to do it anymore.

When I lost my job, I also lost a lot of my friends. When I lost my ability to be really active in church I lost more friends and part of my source of entertainment. My sense of usefulness was wiped out.

But I'm just now realizing that I need to actually mourn each of these losses. I need to take the time out just to miss what I once had, so that I can move on with my life. It will never be the same, I can't say that it will ever even be good again as compared to what it was before. But if I can manage to 'kiss them goodbye' and then embrace life as it is now, I may be able to find new blessings in my life that may not have been there had I never gotten sick. One such blessing is that of my new Fibro Friends. They always understand what I'm going through now. They KNOW how to pray for me because they feel my pain. I would have never met them had I not been stricken with fibromyalgia and arthritis and migraine headaches. For them I am very thankful. I'm sure as life goes on I will realize other blessings GOD has given me to replace my losses, but it's only natural and healthy to mourn what you once had and lost.

If I could ask a favor of "normal" people it would be to give me time to get over my individual losses, help me see the new blessings in my life, but don't judge me because I'm having a hard time missing what I once had. Our lives have been virtually taken away and someones else life replaced it. It's still foreign to us. It takes a while to get used to this new life. And please, don't judge us because our life has changed. We didn't ask to get sick, but we accept it because we have no other choice. We have to live the life we're given, but we're not all dealt the same hand of cards and sometimes you have to fold and start all over again.

Having fibro keeps you busy

2009-09-16T00:53:00.000-04:00

Often when I tell people I don't have time to do something, I can sense their skepticism. I'm pretty sure they're thinking things like, "but you're home all day" or "but you never do anything, how can you not have time?" It's true, I am home all day most every day and I don't go out to do a lot. But that does not mean I have a lot of free time, because I really don't.

I have all the same duties as most people. I have kids to feed, clean up after and spend time with. I have a home, with all the endless duties that come with that and I have a dog to walk. AND I have me to take care of and, with fibro, that is no small task.

A person with fibro has to spend a lot of time taking care of themselves if they want to be able to function at all. Here is a list of extra things I have to do, in addition to all the normal daily things:

*Exercise - For me, exercising in the morning keeps my muscles from getting too stiff and achy. I also think it helps clear up the fibrofog a little bit.

*Stretching - I have to stretch my hip and glutes every day to keep the trigger points in my hip from getting too tight. I have to stretch at least 2X per day but 3 would be better.

*Meditation - I'm not always faithful about doing this, but it is best if I do a short meditation to release stress and tension. A progressive relaxation meditation also does wonders for loosening up the tight muscles. I'm trying really hard to fit this into every day. 2X a day would be ideal.

*Rest - Often, by the time I shower and dry my hair and all that, my back hurts and I need to sit down for awhile. Also, after going out of the house for anything, I need to rest or veg-out for awhile before I can do anything else. AND, I can't just go out in the evening and come home and go to bed. I have to veg-out for at least two hours before I can sleep.

*Trigger point release therapy - My chiropractor sold me this foam cylinder thing that I have to place under my trigger points and roll back and forth on it. This takes a little while because I have trigger points in both hips and my shoulders. I'm supposed to do this 3X per day but I usually just get in two sessions.

*Massage - If my back is really tight, I need to use my shiatsu massage pillow for 20 minutes while I wait for my Tramadol to kick in. I use the massage pillow 2-3X times per day. Sometimes I have to use the pillow on my back during or after making dinner too.

*Hot baths - I've read many recommendations that people with fibro should take at least three hot baths in Epsom salts per week. (I'm trying! It's not easy in the summer when it's so hot).

I guess people (people without fibro) don't understand how time consuming all these things are, or that often people with fibro are moving in super slow motion because of their fatigue and fibrofog. Sometimes, it takes me a really long time to get going in the morning and I feel like I'm moving in slow motion all day long. Everything I do takes me longer than it would most people. And I guess "normal" people don't understand that people with fibro can't just keep going and rest up or take care of themselves later. It doesn't work that way for people with fibro. And I don't think they understand how behind we always are on everything because we have so many days that we are completely out of commission.

I don't want anyone's pity, just their understanding that, when I say I don't have the time, I really don't. I may not be doing anything productive, but I'm still pretty busy.

WHAT IS PAIN? by Teresa Steading

2009-09-14T23:40:00.003-04:00

What is pain, O do you know?
I get it when it snows
And when it rains and in sunshine
Seems I get it all the time.

No matter what the weather here
The pain rains down as thru the air
In legs and hips and head above
Just like a truck hit me, my love!

Can't stand to move or see or hear
Pain really kicks me in the rear!
But I have just one thing to say
Pain ~ You can't make me give up today!

30 Things about Trisha's Invisible Illness You May Not Know

2009-09-14T00:22:00.000-04:00

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and Myofascial Pain Syndrome. Some people say these are two aspects of the same syndrome and others say they are two separate syndromes. I don't know which it is, but while I have many fibromyalgia symptoms, most of my pain comes from myofascial trigger points in my muscles. Also, it seems chronic migraines are joining the mix.

2. I was diagnosed with it in the year: 2003

3. But I had symptoms since: 2001. My symptoms may have started in 2000 after the birth of my son, but they really kicked in the summer of 2001 after we moved.

4. The biggest adjustment I’ve had to make is: Not being able to do even half of the things I used to do. I used to be so active. I loved working in my yard, hiking and bicycling. Now it's really hard to do any of those things, even once in awhile.

5. Most people assume: That I'm fine because I look healthy. I can be dead tired and in so much pain that walking down the hall to go to the bathroom is a challenge. Then I look in the mirror and I'm amazed at how healthy I look! I'm also afraid some people assume that I use fibro as an excuse to do things I don't want to do. It's not like that but I do have to be very selective about what I choose to do.

6. The hardest part about mornings are: That I have to fit so many things into the morning. For me, the pain gets worse in the afternoon so I have to try to do all the active things like showering, housework, grocery shopping and walking the dog into the morning.

7. My favorite medical TV show is: Grey's Anatomy. All the emergencies and heartbreaking illnesses depress me but I like the characters on that show. They're all so wonderfully flawed.

8. A gadget I couldn’t live without is: My laptop. I can't sit in the regular computer chair for more than about 10 minutes because it hurts my back and I can't hold my phone to my ear for very long because it hurts my arm. So my laptop is my link to the world. And I can be productive while reclining or even laying flat on my back. It's a great thing!

9. The hardest part about nights are: Knowing that I have to get up in the morning and do it all again. My daily duties really get me down. It just seems like so much and sometimes it's so hard to get through it.

10. Each day I take 1-2 pills & 13 vitamins and supplements. They are: a multivitamin, calcium, magnesium and D, EFA, Migragard (feverfew to prevent migraines), ginger, Zanaflex (the muscle relaxer I take at night) and Tramadol (the pain med I take in the afternoon).

11. Regarding alternative treatments I: Am all for trying them first. 5HTP is the supplement that has helped me the most. I can't take it now because it can interact with the Tramadol and the Imitrex I need to be able to take when I get a migraine but when I was taking it, it really helped my muscle pain.

Unfortunately, my insurance doesn't cover alternative treatments so I haven't been able to try acupuncture or anything like that. I do get a massage once a month because my massage therapist is a great friend who gives me a discount.

12. If I had to choose between an invisible illness or visible I would choose: Well, I guess I'm vain enough to choose the invisible illness. I'm very glad I don't look as bad as I feel!

13. Regarding working and career: I'm still trying to figure all of that out. I was a stay-at-home mom when I was diagnosed with fibro so I didn't have to quit a job or anything. I thought writing would be perfect for me but the more I learn about the publishing world, the more I wonder if I could deal with all that comes along with having a book published.

14. People would be surprised to know: How fast the pain can come and go. One day last fall I had to sit in the car while my son shopped for a Halloween costume and the next day I hiked 5 miles. With fibro, you just never know how you're going to feel from one day to the next.

15. The hardest thing to accept about my new reality has been: That I can't do as many things with and for my kids as I wish I could. Sometimes I feel like they really got ripped off getting me for a mom.

16. Something I never thought I could do with my illness that I did was: Write a book. It may be a small, simple book and it may not be published, but I wrote an entire book. The first few years that I had fibro I thought I would never accomplish another thing in my life.

17. The commercials about my illness: Are lame! They always show an old lady dramatically grabbing herself and wincing with pain and then skipping away into the sunset (or whatever) after she gets her drugs. There is just so much wrong and misleading about that image.

18. Something I really miss doing since I was diagnosed is: Landscaping my yard. I loved hauling and spreading dirt and bark and planting trees and bushes. I wish I could finish my backyard and completely redo my front yard (it desperately needs it!) Taking an ugly place and making it beautiful with plants is so satisfying. I really miss that.

19. It was really hard to have to give up: My freedom. I loved being able to do whatever I wanted on the weekends. Now there are many days that I don't feel well enough to do much of anything.

20. A new hobby I have taken up since my diagnosis is: Writing books for children. If I didn't have fibro, I would probably would have a job and never find the time to write.

21. If I could have one day of feeling normal again I would: Run! I'm so envious of the people I see out running. I love the endorphins that kick in and make you want to keep going and going. Unfortunately, running hurts too many places and aggravates the trigger points in my hip.

22. My illness has taught me: To let go of perfectionism. I don't have the energy to make things perfect anymore.

23. Want to know a secret? One thing people say that gets under my skin is: "You'd probably feel better if you'd get out more." The people who say things like this are always the people who want me to do something. They don't try to understand that being around people when I'm in too much pain to want to talk to anyone is not enjoyable and makes me feel more isolated. Or that it makes me feel worse to be around people when I'm having the fibrofog. Or that being around all the noise of a crowded room can actually cause fibrofog.

24. But I love it when people: Are understanding when I say I'm not up to doing something. The people who understand are such a blessing.

25. My favorite motto, scripture, quote that gets me through tough times is: I'm finding that the practice of just being in the moment really helps. In the present moment, I'm okay. I'm alive and breathing! It's when I start worrying about what tomorrow or the next day will be like that I start feeling unhappy. There are many quotes on mindfulness that I find comforting, but I don't feel like looking for them right now. (Sorry, I'm just feeling to foggy to remember where these quotes are!)

26. When someone is diagnosed I’d like to tell them: To do their own research. Most of the things that have helped me are things I researched and found on my own. I hate to think about what kind of shape I'd be in if I relied solely on my doctors. Knowledge really is power.

27. Something that has surprised me about living with an illness is: That life keeps going and doesn't slow down. No matter how bad I feel, there is still so much I HAVE to do in a day.

28. The nicest thing someone did for me when I wasn’t feeling well was: When my neighbor Krista bought a Christmas ornament and left it on my front porch because she knew I wasn't feeling up to shopping for one and had an ornament exchange coming up. But there are so many things I appreciate; even when someone accepts my apologies for not making it to something and doesn't give me any attitude about it.

29. I’m involved with Invisible Illness Week because: I want to help spread awareness. Until getting involved with Invisible Illness week, I didn't realize that nearly 1 in 2 people lives with a chronic illness or that 96% of those illnesses are invisible. It makes me realize that we all probably judge a lot of people unfairly. Maybe the unfriendly checker is in pain, or the person who pulled out in front you is having fibrofog and their reflexes are slow (yeah, it could be me). We don't really know what someone else is going through and it's not fair to judge them.

30. The fact that you read this list makes me feel: Good that you would care enough to take the time to read it. Thank you!

30 Things About Teresa's Invisible Illness You May Not Know

2009-09-12T21:19:00.003-04:00

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Ankylosing Spondylosis and Migraine headaches. Fibromyalgia is probably the worst of the 3 illnesses and really my migraines kind of go along with the fibromyalgia.

2. I was diagnosed with it in the year: Fibromyalgia in 1999, AS in 2002 and Migraines in 1990.

3. But I had symptoms since: I was a little girl. I've had the achy feelings as early as age 9 or 10 , especially during the cold and/or rainy seasons. However, it wasn't until I was involved in an auto accident around 1997 that my illness became full blown. I was rear-ended by an 18 wheeler tanker truck while driving on the interstate.

4. The biggest adjustment I’ve had to make is: accepting that I am a disabled person. For so many years I was the "go to" person in my family & friends lives. When people needed something done, I was the one asked. And I loved being that person. Now I can't be counted on for much of anything. I am physically unable to do even the simplest of tasks. In fact, I require help with the day to day things of life. Sometimes even to the extent of personal hygiene, etc...

5. Most people assume: I am healthy because I do not show outward signs of being sick. They assume that they know everything about me already, but my life is not an open book. I try to hide my illness and disability from people, especially because I am still so young. People look at me with loathing when they see me riding on a scooter in Walmart or the grocery store. They assume I'm faking or lazy because I LOOK healthy.

6. The hardest part about mornings are: getting out of bed. Literally! Between the pain, stiffness, headaches & dizziness it is very difficult to climb out of bed every morning. I can barely walk or even bear any weight when I first get up. I can't stand up straight because of the stiffness in my back & hips. And I'm usually so dizzy when I first get up that I struggle to stay upright.

7. My favorite medical TV show is: House. I love how they start with an unknown illness, describe the symptoms and eventually figure out the diagnosis and treatment. I secretly wish I could find a REAL Dr. House who could figure out exactly what's wrong with me and fix it.

8. A gadget I couldn’t live without is: my electric blanket. The fibromyalgia causes so much pain and with fibro sometimes the only thing that relieves that pain is heat. Since the pain covers my entire body the only way to get heat to that entire area is by way of an electric blanket and mattress pad. It sandwiches me in warmth and helps me sleep. The pain is so bad that even pain medicine cannot stop it, but the warmth can really make an impact. I use it year round, not just in the winter. I simply couldn't live without it. I recently had to do without it for about a week because my old blanket died. It was one of the longest weeks of my life!

9. The hardest part about nights are: going to sleep and staying asleep. I have to use sleeping pills just to go to sleep, as well as pain medicine, anxiety meds, etc... Even with all of this, I still wake up an hour or two after I fall asleep and many times I simply cannot go back to sleep. Fibromyalgia causes sleep disturbances and the less valuable sleep that I get, the more pain I will be in.

10. Each day I take 9 different pills & 1 vitamin.
They are: Hyzaar, ,Toprol, Prilosec, Prozac, Klonopin, Abilify, Baclofen, Halcion, Oxycodone & Emergen-C. I also take Imitrex and Phenergan on an as needed basis for migraines.

11. Regarding alternative treatments I: LOVE IT! Of course I haven't tried every method, but I recommend trying anything reasonable once. I have tried massage therapy, physical therapy, aqua therapy, accupuncture and chiropractic adjustments all with positive effects. They did not cure me, but they did provide pain relief, better range of motion, etc... The only reason I do not utilize these treatments on a regular basis is because they are not covered by Medicare and that is the only insurance that I have at the moment.

12. If I had to choose between an invisible illness or visible I would choose: This is a tough question! My first reaction would be to say visible illness because then people wouldn't assume that I'm faking, they would be able to SEE that I'm sick. But then that would probably mean that I was even more disabled than I already am now. So I guess all in all I would prefer to leave things the way the are now.

13. Regarding working and career: I really miss it! At least I miss the ability to do it. I was a Workers' Compensation Insurance Adjuster. I loved my job and loved helping people in need. I often feel like I am less of a human being now that I'm disabled, even though I KNOW this is not true. I just wish I could be a help to people again.

14. People would be surprised to know: that I am afraid of pain. I am terrified to think I may feel like this the rest of my life! And I'm very depressed that I feel like this most of the time.

15. The hardest thing to accept about my new reality has been: the fact that I need others to help me now, instead of me helping others. I always prided myself on being a help and blessing to other people on a regular basis, but now I feel as though I am a burden to people.

16. Something I never thought I could do with my illness that I did was: raise a child~ I was already on disability when I found out I was pregnant with my only child. I was every bit as sick as I am now. I didn't think there was any way that I would be able to take care of a baby, let alone a toddler and then a school aged child. But GOD has given me grace and strength and determination to raise my child the very best that I can. I am by no mean the perfect mother. I wish that things were different, that I wasn't sick, that I could do more things with and for my child, but I'm proud of the things that we've accomplished together and most of all my baby knows that I love her with all my heart. She will be 6 yrs old in January 2010.

17. The commercials about my illness: make me sick!!! They make it look like it's all in your head and if you just take a pill your whole life will be great. It isn't like that at all! It's not in my head, although it does effect it. And I've tried most of the new (and old) drugs out there for fibromyalgia without much success. Most times the side effects have proven to be worse than the illness itself!

18. Something I really miss doing since I was diagnosed is: traveling frequently, being active in church/choir and helping other people. I love to travel......on vacation or just day trips, but this doesn't happen much any more because of the pain it causes me. One 2 hour trip in the car can put me in bed for 3 days because of the pain and stiffness and fatigue. I used to be involved in EVERYTHING at church and I loved it, but now I do good to make it to church on a Sunday morning (or evening) and actually sit through the entire service. It actually causes me great pain to have to sit in one spot for any length of time. And the music and sometimes even the preaching causes me migraines oftimes.

19. It was really hard to have to give up: my independence. I hate having to rely on other people for the most mundane everyday things of life. I can no longer buy groceries by myself. In fact, I rarely drive by myself because of the fibro fog robbing me of a clear, focused mind. My reflexes are too slow now to drive. I used to love to play the piano, and still do to an extent, but now I often forget how to play or sing a song right in the middle of the performance. I will completely forget the tune of the song, with the sheet music sitting right in front of me! This is really aggravating and depressing.

20. A new hobby I have taken up since my diagnosis is: blogging. It helps for me to be able to put into words some of the frustration that comes with this illness. I have always loved writing and blogging makes me still feel somewhat useful.

21. If I could have one day of feeling normal again I would: play in the park with my daughter all day! I really miss not being able to play with my little girl like she wants me to. I'm just physically unable to do the things she likes. She is somewhat of a tomboy and likes to play rough, but my body is too sensitive to pain to do much. I can't even sit in the floor and color with her because of the pain in my legs/back. If I had just one NORMAL day, I'd spend it all on her doing whatever she wanted to do.

22. My illness has taught me: that not everything is as it seems. My illness is "invisible". People can't see that I'm sick just by looking at me, so many people assume that I'm not sick at all. I remember being a person that went on 1st impressions. This illness has taught me that things may be totally different than how they seem and people may be also. Just because someone seems unfriendly or rude doesn't mean that they are. They might just be having a bad day or have something very important on their mind. Just because a person LOOKS fine, doesn't mean that they are.

23. Want to know a secret? One thing people say that gets under my skin is: "Well, you LOOK good!!!" It makes me feel like they're calling me a liar or something. They're probably just trying to be nice or compliment me, but they come off sounding as if they just don't believe what I'm telling them about my illness or how I feel that day.

24. But I love it when people: take the time to find out how I'm doing. After being sick this long, I can tell when someone is just being polite asking, "How are you today?" and really caring asking, "How are you feeling today?" It isn't what is said, but how it's said. I love it when people actually care about me. One of the things that makes me the happiest in the world is to get a card or letter in the mail saying "Feel better" , "Get well", "I was thinking of you" or " I'm praying for you."

25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 103:1-2, "Bless the Lord, O my soul: and all that is within me, bless his holy name. Bless the Lord, O my soul, and forget not all his benefits:" I especially like the part, because it reminds me that I could be much worse off than I am now. I could be even sicker than I already am. God has blessed me with good health compared to a lot of people and no matter what happens in my life, GOD is always there with me, giving me strength to keep going.

MY 2nd favorite quote I just came across a few weeks ago, "It's OK not to be OK!" What more can I say to this?

26. When someone is diagnosed I’d like to tell them: that it will be ok, they can make it through this. I like to share my faith in Jesus Christ because HE is what gets me through every single day. HE helps me take one day at a time.

27. Something that has surprised me about living with an illness is: that things don't really get better. It's your attitude that has to change, because your illness probably will not.

28. The nicest thing someone did for me when I wasn’t feeling well was: took care of my newborn child while I went to the emergency room with a migraine and kept taking care of my baby until I was able to take care of her myself and of myself.

29. I’m involved with Invisible Illness Week because: I believe it's important that people know what we go through. Many people would care more if they understood more and they can't understand if we don't tell them.

30. The fact that you read this list makes me feel: honored and blessed to know someone who cares.

Vacationing with fibro

2009-09-12T19:30:00.000-04:00

This year we decided to take a vacation to Hawaii. I should have been really excited but as the trip got closer and closer, I got more and more stressed about it, to the point that I didn't really want to go. Crazy, huh? Who wouldn't want to go to Hawaii? As it turned out, most of my fears were ungrounded.

First and foremost, I felt so terrible the month prior to the trip that I was afraid I wouldn't feel up to doing anything while in Hawaii. I had migraines that lasted days and days and a fibro flare that lasted weeks. I was unable to do anything and I couldn't see being able to enjoy myself on vacation. I was afraid I would be in pain the whole time and be a total downer for my family. Thank goodness, that didn't happen. What I didn't take into account is how great I feel when I'm near the ocean. My body pains melted away the first day there and my headaches were gone by the second day. I felt fantastic the whole time. Even the nagging back pain that plagues me nearly every day of my life was just gone. I've talked to several people with fibro, and they all feel better by the ocean too. Somebody should research that phenomenon. It could offer valuable insight into fibro, if you ask me.

Anyway, the second thing I worried about was that I would be miserable sitting on a plane for six hours. I can't sit upright for long periods of time. It hurts my back and my hip. Recently, I attended a memorial service and sitting on the small, hard chair for two hours triggered a month's worth of hip pain. No matter how much stretching and massaging I did on my hip, the pain just wouldn't go away. Riding in a car gets pretty uncomfortable after awhile too, and I have comfy, heated leather seats and can sprawl out in my car as much as I need to. I figured sitting upright on the plane would be painful, or very uncomfortable at the very least. Once again, I was wrong. The seat was surprisingly comfortable.

Another thing I worried about was being without all my comfort paraphernalia. I have two contoured pillows that have to be stacked in a certain way for my neck to be comfortable when I sleep. Plus, I can't sleep without my body pillow and even my super soft pillow top mattress can seem hard at times. I regularly use a shiatsu massage pillow, a heated wrap for my neck, a percussion massage tool on my hip and a myofascial trigger point release cylinder. I also use a variety of pain creams that I figured wouldn't be so comfortable in upper 80 degree temps. Again, I shouldn't have worried so much. My muscles loosened up so quickly I didn't need any of my massage/trigger point stuff or the pain creams. However, I really missed my contoured pillows and body pillow. And our bed in the condo?

While very pretty, it was as hard as a rock. Well, maybe not a rock, but it truly felt like sleeping on cardboard. I was so uncomfortable that I was up before 6:00 every morning. Luckily, my lack of sleep didn't catch up with me until we got home.

I also worried that I would get a migraine on the flight or while in Hawaii. It didn't happen. I think my last series of migraines was caused by stress and it felt really good to just get away from everything. Taking a break from daily life seemed to break the cycle of anxiety that I was in. I feel more serene now than I have in many, many months.

So, the lesson I learned from all of this is: Take vacation! Just do it near the ocean.

OMG, I'm Disabled!

2009-09-09T20:53:00.000-04:00

I was diagnosed with fibro six years ago so you'd think I would have figured that out already. But I guess I just didn't want to think of myself that way. I've been a stay-at-home mom for the past eleven years so it's not like I had to give up my job because of fibro. Maybe that's why it's taken me so long to realize that I'm actually disabled.

But the other day, I had to quit my housecleaning job. It was only an hour and half job cleaning house for a sweet little old lady who practically cleaned her house before I even got there, so it wasn't like it was hard. And it was only twice a month. But being on my feet for an hour and a half causes me so much pain in my hip and back. And the hip pain doesn't just go away with a couple of hours of rest. It stays and then it takes me days and days to recover. As much as I loved seeing the sweet old lady and feeling like I was helping someone else and good for SOMETHING, I finally had to tell her I couldn't do it anymore.

Driving home from giving her my resignation, that's when it hit me. If I can't do an hour and half job twice a month, what can I do? I couldn't do a job that requires standing or one that requires sitting. And that pretty much covers every job. It's kind of scary knowing I couldn't support myself or my children should the need ever arise.

I'm freaking out a little bit. Me, disabled? It's kind of hard to accept.

Do people care what they put us through? Or do they even KNOW?

2009-08-30T00:06:00.003-04:00

I'm angry tonight.....I'm just not sure at whom yet! Other people, or myself? What am I upset about? Being taken advantage of and on a regular basis.
If you have fibromyalgia, you KNOW there are just some things that you can't do EVER, some things you have to be feeling up to the task and some things you can do almost any time EXCEPT while you're in a flare. I don't think other people realize this.........regardless of how many times I explain it to them!
For instance, I cannot drive or ride long distances without having a lengthy break (preferably overnight) in between stops. My husband has practically forced me to take 2 4 hour trips, just 2 days apart from each other this week! We drove to the other state, took care of business (all day) and then drove back to our state. A 4 hour trip! That was thursday, then today he did it to me again, all so that he could tape a football game because our satellite is OUT! We could have spent the night and came back home the next morning, but he insisted on driving home each time the same night. I'm in so much pain right now, that i can barely stand it and I can't take any more meds for several hours.
Is it HIS fault that he did this to me......even though I explained how much it was taking out of me? Or is it MY fault because I let him?
It's a catch 22 situation. I can't rest at home while he is gone for 6-8 hours, traveling at night, all by himself. I worry too much! But then again, he didn't put a gun to my head and force me to go with him, although he did make it clear that he wanted me to go with him. Does he simply not believe me when I tell him what these trips do to me? Does he think I'm exaggerating? Surely not because I'll be in the bed for the next 3-4 days recouperating.
So maybe it is my fault. Maybe I'm just not strong enough against him? But I don't like letting him down. I do my best to please him in every way. I thought that's what husbands & wives do for each other?
It's easy for me to tell someone else to not put up with this type of treatment and even tell the spouse what they are causing for their wife/husband who is ill, But it's a little bit harder to tell your own spouse where you draw the line.
So who's fault is it? MINE or HIS???!!! and more importantly, What am I going to do about it?

Hypersensitivity to noise is making me crazy

2009-08-29T20:45:00.000-04:00

One of the many things I hate about fibromyalgia is the hypersensitity to noise. I've been having so many migraines over the past month and I'm pretty sure it is from the stress of the constant noise around here. Even if I don't let the noise irritate me, I can feel myself tensing up when one of the annoying noises starts again.

Take this very second for instance. I drug my papa-san chair out to the deck so I could sit and write and the minute I sat down the neighbor boy started playing his drum set. He lives two houses down but it is SO LOUD he may as well have it set up on the deck right next to me, even though I am using my noise cancelling headphones. I can feel something tensing up in my head and I feel sure another migraine is going to come on. I could take my chair back in the house, but then I'd hear the base from my husband's radio down in the garage. There's no escape. I just want to scream.

I know people think I'm terrible for wanting my kids (and the neighbor kids) back in school so badly. But dealing with loud noise every waking moment is driving me over the edge. Kids are loud and I can't help it, the noise gets to me and fries my nerves.

I seriously wonder how I'm going to get through the next couple of weeks without having a heart attack, stroke, or nervous breakdown. I know the stress is taking a serious toll on my body and mind. I'm pretty sure stress is the cause of my migraines and the flare I've been dealing with. I'm trying everything I can to relax but the constant barrage on my senses is making it impossible.

Do you suffer from hypersensitivity to noise? All the the time, or just when you're flaring? Have you found anything that helps you cope?

It's the weekend...big whoopity do.

2009-08-22T16:46:00.000-04:00

I'm just going to admit it right up front: this blog post is filled with self-pity. If you click off of it at this point, I won't blame you. I am feeling sorry for myself. You see, this is the third weekend in a row that I haven't felt well enough to do anything. Seriously, ANYTHING. Not even the simple things like run to the bookstore for a new book or pick up a few fall flowers to plant. And definitely not the things I really love to do like go to the beach or for a hike. My mind is way too foggy to drive and I'm in way too much pain to walk through a store or stand in a check out line. Even with pain meds it would be miserable and pointless.

I guess there are a couple of reasons why it's bothering me so much this time around. First of all, summer is quickly slipping away and we haven't done a whole lot of summery things yet. The kids will be back in school in two and a half weeks and our weekends will be spent preparing for the week ahead and going to little league games. Another aspect to this, is that I feel guilty for not doing more things with the kids during the summer. This is their childhood and I'm afraid they're not going to have many fond memories of fun summer days.

The second reason it's bothering me so much is because this flare is accompanied by the fog. It could be an enjoyable weekend spent at home if my mind were clear. I could do some writing, I could read a book, or something, anything. Instead, my mind is just drifting in this horrible fog. It's very distressing. I feel like my life is drifting away from me or that I'm a ghost observing my life from the outside looking in. It's weird. Disturbing. And not enjoyable. I find it so hard to believe that people takes drugs with the intention of feeling this way. I hate it. I want my mind back.

But I am not going to spend the whole weekend feeling sorry for myself. Instead, I'm going to spend the weekend caring for myself and trying to heal. My plans for the weekend include stretching, massaging, applying moist heat, and performing healing meditations. All the pain I'm experiencing right now is caused by my myofascial trigger points so all this should help with the pain. The brain fog, well, that's another story. I don't know what to do about that. I guess while I'm sitting on the heating pad I can browse the internet looking for something that will help with it. If I find any useful suggestions, I'll be sure to share them.

I could be a weather person!

2009-08-21T00:30:00.002-04:00

People laugh at me when I tell them, "It's going to rain today" or "We're definitely going to get some snow out of this storm". But they stop laughing when it comes true. It's like my body has a built in barometer or something. I've been like this since I was a teenager and it's all thanks to the fibromyalgia and arthritis. My body starts hurting days before a storm ever hits us and the pain intensifies as the weather does.
All in all, I hate this! I would really like to enjoy the bad weather along with the good weather, but my body just doesn't cooperate. I used to love to sit out in the rain when we would have a thunder storm. It was always such a peaceful time to me. And there's no better time to take a nap than when you can hear the rain hitting the roof and cascading down. But as of late, I'm just not able to enjoy the weather. My body just hurts too much, and from all types of weather.
If it's rainy or cold weather, my body aches like the worst toothache imaginable all over my body. If it's a particularly bad storm system coming in, my hips and back hurt to the extent that I can barely walk. I hate the summer time because the heat (90-100 degrees F) causes me terrible migraine headaches. And any type of electrical storm does the same thing. Any time we have bad lightening, I get a bad migraine. And it can last for as long as the storm system does!
But my body hates the winter because the cold, rain, snow, etc... causes such widespread body pain that I often am in bed for days at a time, huddled under my electric blanket.
Right now, it's the start of hurricane season which ushers in a flurry of activity in my body. Even though I will never see the hurricane, this far inland, and may not even see rain from it, my body "sensors" go off as if I'm in the eye of the storm. Yet for some reason, I usually feel my best when I'm on vacation at the beach. I have NO idea what that's about!
I remember when I was a little girl, my father would always talk about moving us to New Mexico. See he has RA and OA rather badly. He would always talk about moving out west where it's 'dry air' and warmer temperatures in the winter. I wonder if this would work for me. I realize that I probably would not be able to handle the migraine headaches because of the heat there, but I wonder how my body would react, or if it would at all. If anyone is reading this who lives out west, I'd love to hear how the weather there effects your arthritis and fibromyalgia.
Maybe one day I'll live some place where I'm not in such agony over nature, but for now I'm forcasting rain for the next 2 days........pain to follow!

If you could change only one thing about YOUR fibromyalgia, What would it be and why?

2009-08-15T22:46:00.003-04:00

Please participate in this questionnaire and invite others to do the same. I'm VERY interested with the answers we will receive.

"If you could change only one thing about YOUR fibromyalgia, What would it be and why?"

Under the Weather

2009-08-14T23:26:00.003-04:00

When you have fibromyalgia, the phrase "under the weather" takes on a whole new meaning. Wet weather can make us feel bad, hot weather can make us feel bad, cold weather can make us feel bad and weather changes wreak havoc on our bodies.

I've been feeling "under the weather" for a few weeks now. First, we had record breaking heat. We had temperatures reach over a 100 degrees, which is practically unheard of here in western Washington. I had a headache all that week which I attributed to the air quality. But, my body felt fine. I had no aches or pains that week and I was grateful for that.

Then, we got some cloudy weather and it dropped into the 70's. My lymph glands, trigger points and tender points did not like this, even though I did. I started feeling achy, and kind of yucky, like I was coming down with something. My headache intensified. My lymph glands kept feeling weird, like the ones in your neck feel when you bite into a lemon. Every night, I was sure I would wake up with a cold the next morning but I never did.

This week, it turned rainy and temperatures dropped even more. That's when my trigger points and headache reached crisis level. The headache turned into a debilitating migraine that lasted several days. My trigger points got tighter and tighter, despite taking more muscle relaxers. My tender points got more and more tender, to the point where it hurt for anyone to touch me. And my lymph glands felt...sicker, I guess is how I would describe it.

And now? I'm in a really bad flare, complete with fibrofog, stiff, achy joints, tight knots in my muscles and random aching in various places. My throat is mildly sore and I feel like I'm going to get a cold.

Today is Friday and our high temp. was around 60 degrees. It's supposed to be 90 by Tuesday. Will I feel better? Or, will the changing temperature again make me feel even worse? Who knows!

Thanking God for the small stuff!

2009-08-08T01:30:00.002-04:00

So often I go through my life complaining about things instead of seeing how truely blessed I am. Please don't misunderstand, I'm not complaining about other people that complain, just myself! Somehow I just don't feel that it's very becoming to ME as a Christian. Oh, I have plenty to complain about. I surely don't have an easy life, but then again who does?
I complain because I don't feel well most every day of my life. Fibromyalgia for me brings unpleasantness in many packages. For example.....I'm always tired. And not just your usual, I need to take a nap tired......... No this is more like, I don't think I can walk from my bedroom to the living room without falling down kind of tired. If I do take a nap, it can last several hours. But then again that's probably caused by the fact that I don't sleep at night like most people. Not by choice, mind you. I'd love to actually go to bed and fall asleep sometime before midnight each night, but it just doesn't seem to be in the cards for me. I've slept in the recliner the last 3 nights because I couldn't go to sleep at all (even though I take a host of medications at bedtime, including a sleeping pill) and then when I did finally get tired enough to sleep, I was too tired to be able to walk to the bedroom. Of course it was already 6 am by that time.
I have constant body wide pain. An ache, if you will, much like that of the flu I suppose but extreme. The best way I can describe it is to imagine the WORST toothache you've ever had, all over your body at the same time. Then I additionally have throbbing pain and muscle spasms in varioius parts of my body. And worst of all, the migraine headaches. I have a headache every single day of my life, but of course some are worse than others. I'm lucky when it's just a dull headache. I'm crying when it's a migraine. It feels as if your head will explode. It even hurts my hair. After a bad migraine, my scalp will be sore for days. The sensitivity to noise, smells, lights that come along with it. The nausea that also accompanies it. It's a disaster!
Along with the pain issues I have other health problems such as IBS, Restless Leg Syndrome, Ankylosing Spondylosis, OsteoArthritis, PCOS, Panic attacks from Anxiety, Depression, Acid Reflux, Hiatal hernia, Ulcers.........................the list goes on and on.
Now I know you think I just told you that I didn't like complaining, but what I actually said was I don't like it that I complain. I love to complain and sometimes you just HAVE to vent. You have to let out your feelings sometimes or you'll just die from holding it all in. But something happened to me today that made me think, maybe if I spent a little more time being thankful, and a little less time complaining I wouldn't FEEL so bad all the time.
See for the last 1 1/2 weeks I've thought that I was pregnant again. I have one miracle daughter who is 5 1/2 yrs old and I Praise God for her. I'm so thankful that she is here with me and I wouldn't change anything about having her. My life would be void without her. But I don't have an easy life and things get complicated with a 5 yr old. I can't do things that other mothers can and I feel terrible about that. I'm on a host of medications that I wouldn't be able to take, if I were pregnant, not to mention the damage it could do to the baby already. I stay exhausted every single day of my life and what energy I have, I spend on my daughter and husband. If I were pregnant, my life just would cease to exist I think. I'm 41 yrs old. My daughter is just starting kindergarten and I'll finally, after 5 years, have a couple hours to myself every day during school. I can actually take a nap without feeling guilty or trying to corral my daughter into taking one with me (which never works!).
Don't get me wrong, if I had been pregnant, I would have still been a good mother, or as good as I could be, but for me that would be taking away what little quality time I have with my daughter now.
So when I got the call today telling me it was NEGATIVE, I was thrilled!!! I'd never been this happy except one other time in my life and that was when I'd gotten a similar call 6 years ago telling me I was pregnant. See, with my condition of PCOS it's virtually impossible for me to have children. That's why Tabitha is such a miracle. She wasn't supposed to be here. And now that I know it's just her for the rest of my life, I can actually plan a life with her. I still have plenty of things to complain about, but I realized that such a little thing, a negative pregnancy test, enabled me to enjoy life a little better, a little stronger, a little longer. God knew all along what I could and couldn't handle, but I think He let me go through this to appreciate what I have NOW. I too often take it for granted that I have time to play with my little girl. I take it for granted IF I take a nap. IF I spend time blowing bubbles outside with her. As I sit here with tears streaming down my cheeks, I'm hoping that I remember this the next time I'm hurting so bad I can't get out of bed, or can't go shopping because I'm too tired, or miss church to lay on the couch because I didn't have the energy or stamina to even get dressed that morning. Thank you God for not letting me be pregnant today. I even thank you for my illnesses because I know you have a plan and I'm not alone here, ever!
I just want to take a moment to. ............. THANK GOD FOR THE small STUFF!!
Teresa Steading

A helpful link and some choices....

2009-08-08T00:08:00.005-04:00

I just read an interesting article that I wanted to share with you all. First, it talks about the FDA advisory committee's recommendation to eliminate acetaminophen combination painkillers. I'm thinking this could be bad news for many of us. I take Tramadol which is an acetaminophen combination drug. It doesn't work great but it takes the edge off my afternoon achyness without turning me into a zombie. I'd miss it.

Then it discusses natural ways for easing fibromyalgia pain. I was astounded by all the things Epsom salts can help with and I am going out to buy some tomorrow. You can read the article by clicking HERE.

My second reason for posting is a bit of housekeeping. As I'm sure you've noticed, I changed the template awhile back. I just chose this template as an experimental one and would like your help (both fellow authors and readers) in choosing a more permanent template. The problem with this one is that it doesn't say who posted the entry and I don't see a way to change that. Plus, the grey on pink may be a little hard to read? Personally, I'm happy with anything that has wide margins and doesn't have the text in boxes. I'm going to post a few links to blog templates below and I'd like you to tell me in the comments which ones you like. Just click on the words to view the template.

Here is a cute one, one with red, a pink one, black and pink one, a cheerful one, an ocean themed one, a red and black one, a flowery one, one that made me laugh, a purple one, or, if there are any other ones you see along the way just let me know.

Also, I realized that the day/time stamp should be in eastern time since two of you are on that side of the country.

I hope you are all feeling better than I am!

Posted by: Trisha

It's OK not to be OK!

2009-07-29T07:54:00.000-04:00

I have to admit, I stole this line from someone else. A new friend I've just found who is so much like me it isn't funny! So now you know I'm a thief with fibromyalgia. And migraines.......did I mention the migraines? Well I've had one for 3 months now and there's no relief in sight. So if I write something stupid I'll blame it on the migraine.

But back to our topic........
What a blessing it was to hear this statement. Here I've been lamenting under the delusion that life has to be good, if not perfect~ but now I find out that I'm ok just being who I am. Seriously! What a load off!!!
See, my life with fibromyalgia is a living hell. I hurt at all times of the day, whether full body pain, partial body part pain or migraines. My brain barely functions any more.......I forget what I'm doing, I forget what I'm supposed to be doing, and sometimes I just forget I am. Some days are worse than others of course. Take for example today and this whole week actually. We're in the midst of having major thunderstorms every night for a week. Actually, it's raining now and it's 8:00 in the morning. Don't get me wrong, I LOVE the rain. I love how it sounds, and the smell afterwards. It's soothing to me. BUT, my body does NOT like the rain, or the humidity, or the electrical activity in the air. It all causes me extreme pain. Last night I thought I was going to have to go to the emergency room because of the bodywide pain. It was unbearable! And not much better today, I might add. And I must admit that I was feeling pretty depressed about it all. I lament over not being able to play with my little girl, or not being able to cook supper, or not being able to clean my house. It forever plagues me. I feel like a loser (and I'm not talking about my diet now), a real loser. Because I can't do the things that "normal" people can do.
But what a pick me up it was to hear that statement, "It's OK not to be OK!". How much simplier can it be? All this time I'm struggling to be "normal" when really I'm ok just the way I am. I realized that there are more important things in the world than cooking supper, or cleaning house. Just spending time with my daughter is enough. I may have to be creative because I can't sit in the floor & play or go outside a lot of times, but it's going to be OK. At least she'll know i love her and want to be with her. And the dishes and house can wait. It'll still be there when I get around to doing it.........if I get to it. Many times it's my husband who gets to it. Thank GOD for a cleaning husband!!!
But I'm just now realizing that I'm not 2nd rate just because I'm sick. I still have lots to offer to this world. Lots to offer as a wife and mother, even if I'm not the best there is.
So as you go about your day today, and you're not perfect either, just remember, "It's OK not to be OK!"

Goodbye Little Blue Pill

2009-07-07T19:08:00.000-04:00

This last February I finally got desperate enough to try Elavil for my fibromyalgia. I hesitated for a very long time because of the high occurrence of people that gained weight while on it. But the pain from fibro was just getting to be too much so I decided to try it and promised myself I would stop taking if I gained any weight.

At first, it felt like the Elavil was helping with my pain. I had the best February and March that I've had in years. (Typically February and March are my worst months).

I also loved how deeply I slept while taking Elavil. I didn't have one bad night of sleep while I was on that stuff, not even around the time of my period when I usually experience a few nights of insomnia. I even started sleeping deeply enough to start dreaming again. It was great!

The Elavil also seemed to improve the fibrofog. I had a few mildly foggy days but no days where I absolutely couldn't function. That in itself made the Elavil worth taking.

But I started gaining weight. In three months, I gained six pounds. I tried getting back on The Flat Belly Diet which had worked for me in the past. There was no way. I was starving all the time. And I was too groggy to exercise in the morning like I usually do.

I realized I was feeling pretty lethargic all the time. Walking the dog became a horrible ordeal. My hip started hurting way worse than it ever had before. My muscles kept getting tighter and tighter because I couldn't take muscle relaxers with the Elavil. (Taking the two together caused a major drug hangover that left me unable to function until about 2:00 pm the following day). Also, the Elavil seemed to totally kill my sex drive, something that my husband wasn't appreciating.

So, I started weaning myself off them. Now that I have the Elavil out of my system, my hip and trigger points are better (maybe because I can take Flexeril again), I have more energy and I'm feeling less...distant.

But, boy, do I miss that deep sleep. Now I'm back to feeling jittery and wired at bed time, jumping at every noise, and waking up really early in the morning. I do miss those little blue pills that knocked me out for the night.

by Trisha

A blog to follow

2009-07-01T21:42:00.000-04:00

Here's another blog you may want to follow: Dannette is the found of Fibrohaven Support Foundation and her blog, Fibrohaven, has many interesting articles and links. Check it out! You can get to her blog by clicking HERE.

Whey Protein to Boost Your Immune System

2009-07-01T20:55:00.000-04:00

Do you seem to catch every virus that is going around? I used to and I'd be sick for weeks every time. Recently, I realized that for the past two years, I've only had two colds per year. And this last winter, the two colds I had only lasted three days each. This is a huge change for me and I can only think of two things that I've been doing differently. One is taking an Emergen-C packet every day and the other is making smoothies with whey protein powder.

I had no idea whey protein was an immune booster until I saw it on my canister of protein powder. I looked it up online and, sure enough, it is known to support the immune system. You can read an article that explains the how and why of it HERE.

Making a low-cal fruit smoothie with protein powder is easy. I put one cup of fruit in a blender, add a teaspoon of sweetener (I use fructose but I'm trying to switch to Stevia), 3/4 of a scoop of whey protein, a tablespoon of almonds (for some healthy fat) and about a half cup of water. You can also use milk or soy milk if you like your smoothies creamier. It's a delicious way to boost your immune system and it's good for your muscles too.

And the worst mother of the year award goes to...

2009-06-17T20:57:00.000-04:00

Me. I've been so tired this spring, I just haven't been able to keep up with my kids. My oldest is pretty easy. He showers, puts on clean clothes and does his homework without being told. My youngest is another story. He doesn't shower or put on clean clothes unless I remind him. One weekend, I went to do his laundry and he had none. That means for several days in a row (or possibly all week?) he walked out of the house wearing the clothes he had on the day before. And I didn't even notice. And just look at this pile of papers I found in his backpack:

There was homework from March in there. At some point during my long bout with fatigue, I stopped remembering to ask him about his homework. I guess I thought he would say something if he had some. But he didn't and it took me months to remember about homework again.

Last night, we went to his habitat night at school. All the kids made an animal from the African Savannah and wrote a report on it. I walked around the classroom looking at all their projects. I love seeing what the kids are doing. But while I was there, I realized I never did one thing with Daniel's class all year. I didn't volunteer for anything or come to any of their parties.

I wish I could do more events at the school. But with the fibro, I never know how I'll feel. I just can't be reliable enough to commit to showing up once a week. And I know I can't walk around all day long to go on a field trip with them. I have way too much pain to do that. And with the fog, I can't keep track of a group of kids. I can barely keep track of mine.

I'm guess I'm just feeling a little sad because 3rd grade is now over and I don't even feel like I was really here for it. I really wish they would come up with something to cure the fog. And the pain and fatigue, of course. But sometimes I feel like the fog is what's really stealing my life.

Invisible Illness Week

2009-06-17T00:06:00.000-04:00

I just ran across a link to an event in September - Bloggers Unite Invisible Illness Week. They are looking for bloggers to blog about their invisible illnesses during this week. Here's the link.

I tried to download the badge but...well, you know. Brain fog. Buy I wanted to at least get the link on here so I could try again on a clear day.

I want to do this to help spread awareness and to support and connect with others suffering from invisible illnesses. Will you join me? Click on the link and sign up!

Fibromyalgia Awareness Day

2009-05-12T18:58:00.000-04:00

In honor of Fibromyalgia Awareness Day, I've decided to blog about my life with fibro.

Fibromyalgia often starts with some kind of traumatic event. For some, it's a fall or a car accident. Others, the death of a loved one or some other kind of emotional trauma. And for some, like me, it begins with the birth of a child, although my birth experience was a traumatic one, so who's to say whether it was the birth or the trauma. Through the inept actions of an inexperienced doctor, I nearly bled to death minutes after my baby was born. I remember feeling the blood gushing out of me and thinking that I was going to die without holding my baby. I remember the look of shock on the doctor's face (which wasn't exactly reassuring). But I can't say for sure whether it was the trauma of that experience or the stress and sleep deprivation that came with having a difficult, colicky infant that never slept. I remember feeling tired and achy all the time and wondering if everyone else had as much pain as I did. Every day was a challenge.

Then six years ago, I had a massage for the first time. The next day, I woke up feeling like I'd been hit by a truck. I hurt all over. I was so tired I could barely get out of bed. I fell asleep every time I sat down, even when I was the only one watching my children. I developed these horrible pains in my back that didn't go away when I would lay down, like my "normal" back pains. Finally, I went in to see my naturopath. She did some blood work and, because of my high platelet levels, she thought I had a rare blood disorder that only gives people a few years to live. I was really scared! I refused to believe I could have this disorder so I sat down at my computer to search the internet for another explanation. Now this is weird, but a voice in my head said "look up fibromyalgia." So, I did and the light bulb went on! I KNEW this is what I had. It explained so much, so many symptoms that I didn't even realize were related. I went back to my naturopath who did the tender point test and very grumpily admitted that I was right.

In the years since then, I've learned a lot. I have helped and treated myself better than any doctor ever has. With pacing my activities (and accepting my limitations), a healthier diet, high potency vitamin supplements and daily exercise, I am usually able to function pretty well. I research drugs and then ask my doctor for the ones I want to try, rather than just taking whatever they recommend. I learned that people with fibro often flare after a massage if they haven't had one in a long time. I learned that aspartame can aggravate symptoms and should be completely avoided.

For me, the pain is a constant. The pain in my back really never goes away. It might ease up at times, but cooking, cleaning, standing and sitting up in a straight-backed chair all aggravate the pain in my back, even when I'm not flaring. The stiffness in my neck is another thing that never really goes away. Doing workouts with hand weights has helped, but I still have to be very careful of my neck or I end up with trigger point headaches that leave me completely debilitated.

The fatigue comes and goes for me, although I always have to be careful to not overdo it. I can't schedule too many things into a day or a week. I need lots of down time to rest and recuperate. I have times where I feel pretty energetic and other times where I can barely move. Exercising in the morning really helps with this, but I know not everyone is able to exercise.

The cognitive impairment (fibrofog) is another thing that comes and goes. One day I'll feel like myself and the next I feel like my brain is swollen and stuffed with cotton or something. Fog is the perfect way to describe it. I feel like my mind is shrouded by fog. I'm unable to think, unable to speak properly. I forget things, sometimes even things like how to turn on the dishwasher. I'll stand there, messing with the sink, turning the faucets on and off wondering why the dishwasher won't turn on.

Then there are the flares. Right now, I'm in the middle of the one of the worst flares I've had in a long, long time. All my trigger points are tight, tender and radiating pain. It feels like someone took a baseball bat to me while I was sleeping. Some of my trigger points actually feel bruised. Just standing hurts terribly. Exercising isn't possible right now because all my muscles feel like they could pull or be injured easily. Which maybe they can; the other night I pulled a muscle in my side just trying to turn over in bed! How pathetic is that? I'm tired and all I really look forward to is laying down. Having to do anything is just too much right now. I'm a little foggy too, although not as bad as two weeks ago when I could barely communicate with anyone. I'm not sleeping as deeply as I usually do and I'm having the worst problem with dry eyes. Sometimes I wake up at night and can't even move my eyelid my eyes are so dried out. I'm burning through the Refresh Liquigel like you wouldn't believe.

And the really bad thing is, there isn't a cure for this. The FDA keeps approving drugs that are supposed to help but, in my opinion, the side effects sound worse than the fibro.

I've learned to adapt. I am learning to embrace laziness (it's not as fun as it sounds) and to let go of perfectionism (somewhat - I still have my type-A, driven moments). I've learned to accept that I can't do things that other people take for granted, like clean my house for company and then be civil to the company. I'm sure people wonder why we never invite them over but I just can't do it. By the time I get halfway done cleaning my house, I'm damn unpleasant to be around and I can't help it. So, I just accept that entertaining guests is something I can't do. Other things are harder to accept, like not volunteering in my kid's schools. I often feel guilty about that, but what can I do?

I consider myself one of the lucky ones. I can walk. I can exercise and stay in shape (usually). But I know people who feel like I do when I'm having a flare ALL OF THE TIME and my heart goes out to them. Living with fibro is not easy, especially in our world with its endless demands. It breaks my heart to read wall posts where people talk about how their family or friends still don't get it and accuse them of being lazy or whiny. I hope that National Fibromyalgia Awareness will help people become more aware and compassionate.

Mothers with Fibromyalgia

2009-05-08T12:58:00.000-04:00

What does it mean to be a Mom with Fibro? Well, it means that life will be a little different for that family than the typical household. Because of pain, fatigue and various other complications from this illness, you can't always live as everyone else does.
I am a mother of one daughter, age 5 yrs old. She's wonderful and the joy of my life, but life is not easy......for either of us. She often gets disgruntled that I can't always do the things she wants to do. I can't run and play. It's difficult to sit in the floor and play. I can't be in the sun for long periods of time, nor in the cool weather for very long. I'm sure if she had a sibling, she would be a little more content because then she would have someone else to play with besides myself. But as it is, her father and I are all the play companions she has on a daily basis. She does attend
Pre-K, but that will be out for the summer after 1 more week and also it's only 1/2 days. So I have to be ingenuous about ways to play with her and occupy her time.
Right now I'm in the middle of a bad fibro flair and a migraine that has lasted a little over a week. So I've been in bed a LOT over the last week. That's no fun for a 5 year old. But I try to think of ways we can play, while still lying in bed under the blanket (heat helps the pain of fibro for me). Things such as pretend camping, coloring, drawing.....anything that I can do with her without exerting too much energy, which I'm short on, or having to suffer worsening pain is good for both of us. She needs me to play with her and be with her to show her how much I love her, and I need to know that she feels loved. She also has a playset outside that she can play on. At my worst, I could probably just sit on the deck and watch her playing outside. On a descent day, I can play with her on the playset, albeit carefully! She seems perfectly satisfied with this plan. I know that on my worst days she wishes I could play with her better, but she seems to understand that Mama is sick and can't always do the things she wants. What is important to her is that I'm with her, regardless of what we're doing. Just being there makes her happy.
I've often felt guilt and then anger at what kind of Mom fibro has made me. But I'm coming to realize that we're very close because of how the illness has made us interact.
I have had fibro, arthritis and migraines since before she was born. I was diagnosed about 3 years before she came along. So she has never known the "me" in pre-fibro form. I think it would have been harder for her to adjust had it been the other way around, but I still think she would have adjusted. She a remarkable little girl and I'm quite proud of her. In spite of all the problems I have and the hard times I face, I wouldn't trade being a Mommy for anything in the world. I love it! Hopefully, my condition will improve over the years, rather than deteriorate. But even if it does not I will always be glad for the opportunity to be a Mom. My daughter is my anchor many times. She is the reason I get up in the mornings. Although fibro moms may be different outwardly, we are all the same on the inside..........Our children have stolen our hearts!
May you have a wonderful Mother's Day!!

Fibro and Anger

2009-04-24T15:26:00.000-04:00

I've read many posts on many fibro sites about how common it is to feel anger about having fibromyalgia. It's easy to go there when you think "Why me? Why do I have to live with this?" I've had many days I've felt that way. That "Why me" question never leads anywhere good. But the last few years, I'm finding myself feeling more angry at the world for demanding so much of me. Instead of wondering why I have fibromyalgia, I find myself wondering why there are so many demands on me.

For me, the middle of April to the middle of June is the very worst time, even worse than Christmas. The school has all their end of the year stuff; fund raisers, music concerts, teacher appreciation week, etc.,etc. There seems to be no end to the demands the schools make on our time and bank accounts this time of year. Then there is baseball with multiple games and practices each week. And on top of all that, there are friend's birthdays, family birthdays, Mother's Day, and Father's Day. By the time Father's Day is over, I feel like I've run a gauntlet of holidays. It completely wears me out. I'm just not cut out for all the shopping and dropping by to visit that holidays require. By the end of it all, I feel like roadkill with a flock of hungry vultures tearing away pieces of me. (I know, it sounds dramatic but it's really how I feel!) And the bad thing is, it's all stuff I can't say no to. I promised myself I wouldn't put anything extra on the calendar. And what happens? Reminder cards for dentist appointments come in the mail, friends invite me to their parties, notices come home about whatever is going on at the school. So then I have to say no to some things and it always ends up being the things I want to do because I have no energy left from all the things I HAVE to do. And I find myself getting angry. Why are there so many demands on my time and energy? I don't feel angry at individual people, just at the world in general for being so dang busy all the time. Does anyone else feel this way? And what do you do about it? I really don't want to spend the next two months being angry at the world but it's already starting!

The Importance of a Support System

2009-04-19T03:39:00.000-04:00

I've been diagnosed with fibromyalgia/CFS for 8 long years now, but I've suffered for much longer. I can remember being a pre-teen and hurting so much it would make me cry. Especially in the winter and on rainy days. I would literally sit beside the gas heater in the winter until my clothes would scorch because heat was the only thing that would help the pain. I remember taking 4 aspirin, 325 mg a piece , at a time, several times a day when the pain would hit me.
All that time I never knew what was wrong with me. We brushed it aside as minor arthritis. We were too poor to go to the doctor back then. Dr's were for emergencies only.
At that time in my life, I didn't know I would need a support system in my life, or even what a support system was. I have come to depend on them heavily in the last 8 years though. In fact, I couldn't survive without it.
MY support system comes in many different forms and many different people. I hate to say it, but not much of mine is in the form of family. My family does not understand my illness. They are not critical of it, they simply can't understand how I can be so sick, but look so healthy. I always catch flack from them if I miss a family gathering or if I have to leave early from one. No, my support systems is mainly built from friends and believe it or not doctors. My immediate family, husband and daughter, are very supportive however my daughter is only 5 so there's not much she can do to help. She occasionally brings me stuffed animals of hers, to make me "feel better soon". That is priceless and it does make my spirits feel better.
I rely on several doctors, who have become good friends, to help me though my struggling times. Sometimes with medications, but a lot of time just with encouragement. The assurance that it's NOT all in my head. One such doctor is my psychologist. I suffer from extreme depression as a result of my fibromyalgia and how it's changed my life. This doctor is a Christian and also suffers from fibromyalgia, so she really does understand what I'm going through at times. Other doctors are my internist, psychiatrist and pain mgmt specialist.
But my main source of support is from friends. Both near and far away. Some have fibromyalgia themselves and understand what I go through. Others are just sweet caring people who see me in need and try to help. Without these friends I probably wouldn't be here today. I would have given up my fight long ago. Special friends like Trisha and Vickie, who co-author this blog, have immeasurable value to me. They pick me up when I'm down. Have sympathy and empathy when I am going through a tough spot. But most of all, they can relate. That's very important! You need someone who understands what you're going through. This can come from friends, from organized support groups or even, as in my case, from places like FaceBook. That is where I found Trisha and Vickie. And I thank God every day for them.
Without a support system, it often feels like it's you against the whole world. You need to know that there are others suffering just like you. You learn so much from them. I'd had some crazy symptoms for years but after speaking with some of my support system, found out that they were related to the fibromyalgia as well. For years I suffered with depression all alone....I was ashamed to admit I had it. But my support systems taught me that depression is a natural human emotional state when dealing with something as life altering as fibromyalgia. I have often heard it said that fibromyalgia will not kill you.........it will just make you wish you were dead!!! I don't exactly know how true that is for people who don't deal with depression along with their fibro, but for me the statement is true. And if it were not for my support systems cheering me on, I probably wouldn't be here today.
Please, don't suffer alone with this illness, or any illness. Build you a support group/system and let them help you through this. Sometimes it may be that you just need someone to talk and listen to you. Other times, you may need help with housework or errands., trips to the doctor, etc... Don't be ashamed to ask for help from those who have offered it. They wouldn't have offered if they hadn't meant it. Take advantage of those offers to "get out of the house" or go to lunch. It is imperative that we have human contact on a regular basis. Too often we sit in our little rooms and suffer all alone, when there's caring people out there just begging to help you. I realize that you have to pick your friends carefully as some may be like Job's friends in the Bible.........just critical of you. But I feel strongly that God has a support systems out there for you if you'll just look and let people in. I am 40 years old and just this year have I really started building my support systems. Before I just shut everyone else out. Don't go through this alone. You don't have to. You don't need to. Open the rusty lock on your heart and life and let people in. It's the only way to really survive. May God bless you my friend.

How do I survive the Holidays?

2009-04-08T00:09:00.000-04:00

The holidays are always a difficult time for me. I live out of state from all of our family, and even though it's only a 2 hour drive, it's hard to "make our rounds" and see all of the family when we go up. Having fibromyalgia makes this even more difficult for me because I simply do not have the energy and stamina to go to and keep up with everything going on. Many times I just opt out of going to family gatherings because it's too tedious. Over the years I've lived with this illness I've learned a few "rules " to follow for myself. Not everyone, especially family, would agree with these rules, but for me it's necessary and keeps me going. With Easter coming up, I would like to share a few of these "rules" with you. I would love to hear comments on what you think of them, as well as hear some of your tips on surviving the holidays!

1. If it's not important to ME, don't do it. Just because a gathering, party, social is scheduled, it does not automatically mean I have to attend. Pick what is important to you personally and focus on those things. Don't try to attend everything......it's impossible, even for those who are perfectly healthy!

2. Plan Ahead! This is the biggest help to me since I've become sick. I can't get things done on a regular schedule anymore, so I try to get things done far ahead of time so as to avoid a deadline. Deadlines just lead to more stress. If presents are required, purchase ahead of time. If food is required, try fixing something that can be prepared ahead of time and frozen then just popped into the microwave at the last minute, or even better purchase that ham or turkey from a service center.

3. Don't volunteer unless you really feel "lead" to do so. Don't feel pressured to volunteer your time or services just because everyone else is doing something. You have to take care of yourself first so that you can then take care of your family.

4. Learn to say NO! This was probably the hardest thing I've ever had to do, but for me it has become a necessity. People are always asking me to do them favors, help them with things, etc... and I've had to learn to say no. I always explain that it's not that I don't want to do whatever the task may be, but that I simply am too sick to take on that particular task.

5. Don't overbook or double book yourself. With fibromyalgia, you are allotted just so much energy for each day and when it's gone, you crash. If you overdo it, you crash for several days!! So learn to only book what you KNOW you have the energy to take care of, with some left over. Because you're always going to exert more energy than you initially thought.

6. Try to keep your plans SIMPLE! Everyone wants to have the best holiday EVER!, but that's usually not possible for anyone, let alone someone with fibromyalgia. Try to keep your plans simple so that it doesn't take so much work to accomplish what you want to get done.

7. Ask for help! This is probably the hardest one of all for me. I've always been a one woman superwoman. That is until I got sick. Now I can't do simple tasks by myself on some days. So during the holidays, when things are really about being with family anyway, feel free to ask for help from others. Most people would love to help out, especially women.

8. Don't be ashamed to tell people you have fibromyalgia and you are sick. Most people assume we are perfectly healthy because we look healthy outwardly. It usually never crosses their minds that we may be struggling. If you simply explain that you're sick with fibromyalgia and what it causes, most people are very compassionate and would love to help out. I know it's a hard thing to do. Sometimes embarrassing, but it's not fair for us to complain that people don't understand us or expect too much out of us, if we haven't even told them about our conditions.

I hope this helps someone out there have a better and more joyful Easter holiday. May God richly bless you all as we celebrate this most wondrous of holidays.

Will I Ever Learn?

2009-04-07T18:27:00.000-04:00

I was diagnosed with fibromyalgia six years ago. Six long years of pain, fatigue, brain fog, flare-ups, good days and bad days. Six long years to learn that I don't have that much energy anymore. You'd think in that six years I would have learned the all-important lesson to not overdo it, to listen to my body when it says it's tired. But have I? Apparently not.

I think my fibromyalgia is on the mild side now. I've come a long way since I was exhausted and stressed with a new baby/difficult toddler. So I have some days where I feel pretty good. Sunday was one of those days and I decided to give my yard some much-needed attention. Kneeling down pulling weeds and pruning bushes didn't seem like that much work at the time. Still, by the time I finished the backyard, I was feeling tired. But I hadn't touched the front yard yet, so I kept going. I pushed myself to the point of being utterly exhausted. And two days later, I'm still exhausted. I have no energy. My arms and legs feel like they're made out of lead. I just want to curl up in the cozy cocoon of my bed and sleep for the week.

But when does life ever work like that? Not often, in my experience! Nope, I have a busy week. Baseball games, lunch dates, massage appointments and a cleaning job to do. And on top of that, I scheduled a doctor's appointment, even though I knew I should wait until next week when I wasn't so busy and/or exhausted. For me, the one extra thing per day rule only works if I schedule one extra thing for three days or less for the week. Schedule four extra things in a week, and by Thursday I'm so tired I just want to cry. Sometimes, I do cry, just out of sheer exhaustion.

I hate being this way. I feel so weak. So pathetic. At thirty-eight years old, I'm fairly young. I'm healthy (aside from fibro). I feel like I should be able to do more. Maybe that's where the refusing to accept my limits comes in. But for six years, I've experienced the backlash from pushing past my limits. I'm experiencing the backlash of fatigue now and I'm wondering; will I ever learn?

My week with Fibro

2009-04-02T23:13:00.000-04:00

I wanted to get on here and write something wonderful & witty and helpful, but it just ain't happening!! To tell the truth, this has been a horrible week for me. Well let me tell you about it......
Living with fibromyalgia, well, it's just not easy. It changes your life and some days it just gets the best of you. I live in Georgia and in my area, it has rained almost every day this week. Now don't get me wrong.....I know we need the rain, but my body just doesn't agree! Any major changes in the weather cause me great pain with the fibromyalgia and usually with a migraine to boot. But the rainy weather is sometimes the worst. I used to love rainy days. They always seemed so peaceful. I could snuggle up with a cozy blanket, a cup of tea and a good book. Well these days I'm snuggled beneath my electric blanket , because it's still chilly here with the rain, and my mind is too foggy to concentrate enough to read anything more than a label on a can of soup! The rain and cold just seem to seep deep into your bones. (Did I mention that I have osteoarthritis also?) It feels like the worst toothache you could ever imagine except it's all over your body. My arms and legs are the worst. But then the muscles and connective tissue also flair, and it kind of feels like everything is inflammed and cramping all at the same time. My joints hurt from the osteoarthritis so it makes it hard to even move the slightest bit. Don't even think about going outside in the rain. That would be insane! But sometimes you just have to. For example, my nephew is getting married this Saturday night. The wedding is being conducted 2 hours away from where I live. So I had to do a lot of foot work this week. Such as finding a dress that would still fit me and take it to the cleaners. Finding shoes that matched. And don't forget the all important WEDDING GIFT. With the amount of pain that I'm in and the combined fatigue, I knew I would only be able to accomplish one task per day. So I've been "busy" every day this week preparing for my nephews' wedding on Saturday. I know it sounds crazy that this could take an entire week to get ready for, but with the fibromyalgia, it's as if you're only alloted so much energy for each day. It takes, usually, the entire amount of energy just to get through the day without crashing. But when you add additional tasks to the day, something else has to go. So I haven't cooked supper the last few nights. We've gotten take out. And while it was a great help to me in order to get through the week, it's just not healthy. As Trisha stated in a previous post, people with fibromyalgia have to watch what they eat because it can be toxic to us. Things that other people take for granted. But I digress.......
When you've expended all your energy, there is no more! Sometimes you can psych yourself up and generate enough energy to do special things, but other times no matter what you do, you just aren't going to be able to avoid the crash.
To this already complicated scenario, let's throw in a dash of stress. Stress that my husband hasn't worked in almost a year. Stress that my child has been sick with a cold all week. Stress that my youngest brother has just been given the news that he either has leukemia or a brain tumor..........but the plan of action isn't prepared yet because they haven't finished running all their tests yet. Stress is like a poison. It can do things to your body that doctors haven't even realized yet. For a fibro patient it can zap your energy, tighten your muscles causing pain, give you migraine headaches, activate your irritible bowel syndrome. Not to mention other health concerns like high blood pressure, heart attack, stroke..........Oh, and what it does to you emotionally is 10 times worse than your body. Stress is probably the #1 cause of depression. And it's all a vicious cycle. The more stress you feel, the more pain you feel, the sicker you are, the more depressed you are, which generates more stress, and over and over again.
Tomorrow was supposed to be my "free" day, but now I have to cut my husband's hair for the wedding. Plus I've been given the news that we are leaving at 7 am Saturday because we have to go by and do my mother in law's monthly grocery shopping, cleaning, etc... The wedding isn't until 7 pm, with reception to follow so we will likely be spending the night there. At least I hope so, because a 4 hour car trip just isn't possible for my body after this week. But that means that tomorrow, I have to pack for the trip.
In all honesty, if it were someone else, I probably would just mail a gift and not even go to the wedding. But I love this kid, his family has been good to me and he is the son of the brother who's just been diagnosed with leukemia/brain tumor. I want to see my brother. I need to see my brother. This has been very hard news for me to hear. I love him so much. I know how much I suffer with my illnesses, but I know that his diagnosis is much worse. Fibromyalgia may make you feel like you're going to die or that you wish you could die, but it's not lethal. Cancer is!
I know my writing here is just a jumbled mess, but some days that's all that you can be. All I can do is give it my best and that's what I have done. Maybe you'll identify with what I've said, or maybe you know someone who has fibro who says NO a lot, or cancels a lot and now you know why. I hope it helped you. It did me.

The Insidious Evil of Artifical Sweeteners

2009-03-31T19:06:00.000-04:00

I am really ticked today. I ordered some protein bars from Melaleuca, a wellness company that is supposed to have healthy products, and guess what is in them? Sucralose. So, no protein bars for me. With aspartame, products usually have the little aspartame logo right on the front. Not so with Sucralose. They are very sneaky with that stuff and they are putting it in so many things these days.

Here's my #1 rule for feeling good: Do not consume any artificial sweeteners.

Long before I read about how artificial sweeteners can exacerbate fibromyalgia, I experienced it. If I ate or drank anything with aspartame, I would get a headache and feel very sick to my stomach. And I would have what I call the "phantom pain", you know that pain from fibro when you know there is nothing wrong with whatever is hurting. I rarely have the phantom pain anymore, unless I accidentally eat something with aspartame. Then I start aching in places that usually never hurt, like my wrists and my fingers.

Sucralose doesn't make me feel as bad as aspartame, but it does affect me. I feel yucky after eating it and I always get a headache. I haven't been able to find as much info on Sucralose but I haven't looked lately either. I figure, no matter what anybody else says, it's best to just avoid it. My naturopath did tell me Sucralose was carcinogenic. That's reason enough to avoid it.

In The Fibromyalgia Solution ,Dr. David Dryland says that aspartame is an excitotoxin, a molecule that can cause neurological damage. He also says that a byproduct of aspartame is formaldehyde, which protects your fat cells from breaking down. So not only is it toxic, its not a good thing if you are trying to lose weight either!

On the flip side, high blood sugar levels can also exacerbate fibromyalgia, so eating packaged foods or drinks with regular sugar isn't good either (although it probably isn't as toxic). The best thing is to avoid sweets and packaged foods altogether, which is a depressing prospect at times. I especially miss flavorful drinks. I would love to have a pop now and then. Or one of those yogurt smoothie drinks. Or those protein bars I just bought. Or......the list of forbidden things gets very long. (sigh)

Vickie says.....

2009-03-31T18:58:00.000-04:00

Fibromyalgia. When I was diagnosed with this in 1991, I had never heard of it and when I went to look it up in the Medical Dictionary, it wasn't in there. So I looked it up in Webster's Dictionary, not in there. So I broke the word up: Fibro - any soft tissue in the body; Myalgia - pain. Ok now what? I was also given the diagnosis of Chronic Fatigue Syndrome and I don't remember looking that up, but someone in our church was very sick with this and I could only call her after lunchtime. I got a lot of information from her, one of which is "you are probably going to have to quit working and go on disability." Disability? I'm not disabled, just feel like I have a very bad case of the flu for the past year. I did apply for SSDI and have been since 1992. It actually took 2 1/2 years, but thankfully I had long-term disability to carry us over. Since then I have met many people with this illness, and we all have different symptoms and how we got sick. As Trisha stated, she had a lot of energy to do what she needed and then collapsed. I'm not sure if it's my age (I am older by several years) or am in a relaspe since I had been busy and stressed from the holidays and my son's wedding) but have not been doing much since the end of January. I've been in a lot of pain and am very tired. As a result, I have been very depressed. I have plans that I can't follow through with. Some as simple as going to the bank so I can pay bills. That was today's plan, it's cold and raining and it's not worth going out if I already feel bad. I think I've learned to listen to my body more now than I used to. I plan to go to the bank tomorrow! I have to pay bills!
March 31, 2009 11:24 AM Posted by Vickie - (with help copy and pasting by Trisha)

Making Lemonade

2009-03-31T16:17:00.000-04:00

Why does life give us lemons? And what's so great about lemonade anyway? Why can't life give us oranges. Plump juicy oranges! Well, life doesn't give us oranges, but it does give us lemons. For example, life gave me Fibromyalgia. A horrible illness, but not life threatening. I hate it! It's miserable. It's painful. It zaps your energy, your life and it'll try to zap your soul if you'll let it. I've been diagnosed with it for about 8 years now. Although I've suffered since I was a teenager. It's different for everyone. For some it's a minor inconvenience, but for many it's life altering. I am one of them. So how do I make lemonade out of fibromyalgia? By continuing to live day by day, moment by moment. It's not easy. It takes a lot of work; a lot of heart. But it's worth it~ I've learned to be more compassionate, more thoughtful~ Not take things so for granted. I found lots of new friends that I wouldn't have met had it not been for the fibromyalgia. And for that I'm eternally grateful. I've learned to enjoy every "good" minute that I have because they don't come around nearly as often any more. I've come to realize that you can't judge someone else, for ANY reason because you don't know what's going on in that person's life. But for me the greatest lesson I've learned is that, no matter how turmoiltous your life is, or can become, God is always in control of it. Nothing comes as a surprise to Him. I may not understand His plan, but He does. And He always wants his best for us. Lemons may be sour, but they are also very nutritious for you. And when you add the sweetness of God's Peace to your lemons, you have some very delicious Lemonade!

Creative Energy = Energy!

2009-03-30T15:37:00.000-04:00

I've just discovered an interesting phenomenon. When I am in the state of getting inspired by new ideas (I call it downloading), I also "download" tons of physical energy. I don't understand the how or why, but I've experienced it so many times lately that it can't be coincidence.

Last week, I had been tired, achy and lethargic for several days and I was behind on all household chores. Then I started coming up with ideas for my writer's website. Soon, I had so much energy I found myself cooking three different things, tidying the house and taking out the garbage and recycling, all at once. After dinner, I still had so much energy I took the dog for a second walk. I even had a hard time coming down to go to sleep at night.

And yesterday I was, once again, tired, achy and cranky. The sun came out and we went for a walk but I just couldn't enjoy it. Then I started playing with my camera and went out taking pictures of flowers. Suddenly, I felt much, much better! I had energy. The achy, cranky feeling subsided in to the background.

Give it a try! Find something creative that gets you excited and go for it! It will make you feel better.

Here we go!

2009-03-24T21:06:00.000-04:00

So here we go girls. Our own blog!