I'm still living!!!!

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

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

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

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

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

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

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

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???

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

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

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

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?

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

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........

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

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?

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

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?

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!

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