Saturday, September 26, 2009

Odd Symptoms

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 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

Wednesday, September 23, 2009

My nervous system is fried

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? 

Saturday, September 19, 2009

What Is Wrong With That Woman?

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?

Wednesday, September 16, 2009

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

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

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.

Monday, September 14, 2009

WHAT IS PAIN? by Teresa Steading

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

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! 

Saturday, September 12, 2009

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

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

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.

Wednesday, September 9, 2009

OMG, I'm Disabled!

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.