Monday, May 24, 2010

FibromyWHAT?

Hello! I'm very new to this blogging thing, so I'm just going to write in it as if it were a journal or diary. I think the concept of blogging is brilliant. It's an excellent way to share your thoughts and feelings with the world, all in one place! I've wanted to blog for a long time, but I didn't know how to...until I found the blogger on my Google homepage. Extremely easy to set up...so I recommend it to all who want to start blogging themselves but don't know how to go about it.
OK...now that I've done my sales pitch for blogging (LOL!), let me start out my first entry by saying this:
I HATE FIBROMYALGIA!!!
There, I feel so much better now getting that off my chest.  I've had the blasted illness for 14 years now. I was diagnosed in December of 1996, just one month after my husband and I were married.  I kept coming down with what I thought at the time was the flu. You know the symptoms...generalized body aches, extreme fatigue, but then I started having other symptoms NOT associated with the flu, such as sensitivity to hot/cold, intermittent diarrhea/constipation and the aches were no longer generalized, but more local to certain areas such as my shins, lower back, chest, shoulder areas and I kept getting headaches, forgetting things and feeling like I was in a "fog", too.  I had such extreme exhaustion that I couldn't work very well as a floor nurse for 12 hours, no less!  I had to keep calling in sick.  That's when my husband made an appointment with his doctor (I had just moved to the Phoenix area and had no doctor there yet) to have a check-up. After canceling the appointment twice, (I had a thing about going to doctors back then...such as I HATED to go to them!) I finally did go and have the examination.  The doctor listened to my story, and then started pressing me in the areas that killed me the most. Then he said, "You have fibromyalgia."  FibromyWHAT? Here I was a nurse and even I didn't know what that is. I had never heard of it.  Oh, how I wish I could have kept it that way!  I did some research, which yielded not too much about this mystery illness. The doctor put me on Elavil and sent me on my merry way.

What I found out in my research was that fibromyalgia is a condition that affects the muscles and sometimes joints. It causes widespread pain (but NO damage is caused to the areas) that alternates its sites around the body. One minute it's in your right leg, then the next it has jumped to the left elbow. Researchers believe it has something to do with an imbalance of chemicals in the brain called norepinephrine and seratonin. They both balance your body by regulating your sleep, for one thing. With fibro, you don't sleep too well (because of the widespread pain!), so your muscles can't regenerate like they should after a long, hard day of use. So you wake up feeling like total crap. And then comes the exhaustion. I'm not talking about being "a little tired." I'm talking about you feel like you've been run over by a truck 3 times and you are so very tired you can't get up. That's the best way I know how to describe it.  Sounds fun, huh?

I took the Elavil religiously for the next four years, even though the side effects were one right after the other. Drowsiness, daytime "hang-over", dry mouth, constipation, weight gain (which I definitely didn't need!), to name a very few.  I wasn't used to taking medications, except the occasional aspirin, and now I had a pill I took at night and the doctor also prescribed Flexeril for the muscle spasms in my lower back. The pain was always worse there for some reason.  Anyway, I was going my merry way (my husband and I at that time moved to Yuma so we could combine expenses with my parents and live together) and then it quit working. I went back to the doctor (my doctor I had when lived in Yuma BEFORE I was married) and he referred me to a rheumatologist, who then stopped the Elavil and put me on Zoloft.  I liked the Zoloft a whole lot more than the Elavil, I had so fewer side effects than when I was taking Elavil. For one thing, the daytime "hangover" resolved itself and I could work a lot better on the Zoloft.  So I thought I was doing pretty good. I could work again, I was sleeping better and the pains were a lot less.  My husband was adapting well to life in Yuma, as he lived in Phoenix with his parents since he was 11 years old.  It was a lot easier for us financially, too, sharing expenses and pooling our checks together with my mom's. My dad wasn't working, hadn't worked since I was 13 years old. I'm not exactly sure why. My mom had been trying to get him to work, but he'd look for a job, they would turn him down and he lost his self esteem, I guess.  My husband found a great job as a mail clerk for the City of Yuma. Yep, life was good back then!!

My mom and I shared rheumatologists since she was going to one at Scripps Clinic in La Jolla, CA. My mom had lupus and rheumatoid arthritis (RA) for years and I really liked her doctor, Dr. Schulman. She was compassionate and didn't berate us about our weight like other doctors did. My mom and I were "hefty" gals, if you get the picture, and the rheumy in Phoenix told me my sed rate was elevated because of my weight. Yeah, right! I get so tired of doctors telling me the obvious: I'm fat and need to lose weight. I KNOW that, but with the pain and fatigue, who can exercise?  I had lost over 100 pounds taking Phentermine a few years back, but then had to stop the drug because of the Phen-Phen scare and I regained all my weight, plus some.  I'm a very emotional eater and so was my mom. When we were together, which was a lot, donuts beware! We could eat a whole dozen in one sitting!!!  I know you are thinking my profile pic I chose for this blog shows me not looking too bad, but I am too embarrassed to put up one how I look NOW.  We had to add prednisone to my medication list due to in 2004, I was diagnosed with rheumatoid arthritis. I was so incredibly stiff, I could barely move. The prednisone, though it was my "miracle" drug and I could move so much easier, didn't come without its own bag of evils.  I developed the "moon face", gained weight, increased appetite, leg swelling...to name just a few. My mom had been on prednisone for over 10 years at that time and had all the effects named previously. She always remarked that her head looked like a bowling ball...only thing missing were the finger holes! I know what she means!!  My mom had such a great, sarcastic sense of humor.  She had such a positive attitude about her illness, this coming from reading in a library book about Lupus saying the life span of those with it is just FIVE years, it boggled my mind to think she could still stay positive.  Well, she beat those five years and lived until one day past her 60th birthday. She died July 8, 2008 from what the doctors believe was Lupus induced kidney failure.  It came on so suddenly. My mom and I were in San Antonio, Texas for me to start working at Northeast Methodist Hospital and then the guys would come when we found an apartment.  Well, we never could get that apartment because my mom fell in the parking lot of a Walmart and dislocated her artificial hip (she had bilateral hip and one knee replacement due to osteoarthritis) and had to have it re-set. She did fine for one more week, then on July 7th, her birthday, she started acting strange. I couldn't keep her awake for more than 5 minutes, she hurt all over and she was having conversations with her father, who had died 15 years ago.  I called an ambulance and they took her, to all places, the same hospital I was going to work at.  They treated her very well and did everything they could, but her potassium was so high it kept stopping her heart and she was on a respirator.  I know she wouldn't have wanted that, so I did the hardest thing I've ever done in my whole life and that was to tell them to stop CPR as she only had 1 percent survival rate. I know my mom well enough that she would come back and haunt me if I let her be a "vegetable" as she called it.  So that was that. My grandma (mom's mom) came from College Station, Texas, to be with me and help me wrap up loose ends.

I rode back to Tucson alone, (we had moved there almost one year earlier for another one of my jobs at Tucson Medical Center) and I used that time to reflect over my mom's life, learn from her life lessons and try to figure the HELL out of what happened and how we were going to survive without her. She was the glue that held our families together.  Without that glue, we all went our own ways. My dad refused to take suggestions from my husband and me, he wouldn't help us pack up the U-Haul for the move to San Antonio (I thought Mom would have wanted us to continue with our plans) and he kept getting high on his prescription medications. My dad has a LONG standing prescription drug problem and now with my mom gone and not able to whip his butt into shape, he went willy nilly on his prescriptions and even took some of mine and my husband's!  My husband is taking Vicodin for his bone/joint pain due to the medication he is taking for his rare GIST tumor in his abdomen. It's inoperable due to its location over vital blood vessels, so this medication (called Gleevec) is saving his life. He is now in remission and has been for the past 7 years.

We "moved" to San Antonio, if you can call it that. We lived at the Super 8 Motel right by the hospital my mom died at.  I continued the orientation there, but when I went up to the unit I'd be working on, I had such a panic attack they sent me home (or back to the motel!).  Fibromyalgia feeds off of stress, so needless to say, I went into the WORST flare-up of my life. My life was falling apart. My mom died, I can't work due to the flare-up and my dad kept taking my pain pills. He didn't respect my husband as a part of our "team." My dad was KING and that was that. I honestly didn't know how we could continue on like this.

We didn't continue on in San Antonio. We were flat broke, I lost my job at Northeast and my husband and I were up to debt to the very tops of our heads. No credit cards, no gas cards, no nothing. Luckily, my husband's parents were very gracious and not only opened their home to us, but also paid for a lot of our gas and motel rooms while we were traveling to Phoenix!  They literally saved our lives, for without them, we would be homeless.  So their home became our home until we get back on our feet.

I'll end my first blog entry on that note. I hope you enjoyed reading this and it wasn't too boring. I just wanted to fill you in a little about who I am and what fibromyalgia is.  Look for my next blog entry soon.  :0)

6 comments:

  1. Thank you for sharing your story. It is very helpful to me, since no one close to me understands

    ReplyDelete
  2. Excellent, Missy.... You have a nice writing style.... thank you for sharing...

    ReplyDelete
  3. Am glad you are writing a blog and are able to communicate with those that suffer from the same infliction. It does help to write and express yourself and share your emotions and also lend an ear to others. I'll check in often and cheer you on, if not 'up'!! : )

    ReplyDelete
  4. Missy, I know you from the NFA, I know we share the pain of Fibro, but now I know you as a person outside of that small world. You're story is not boring, it is real and well written... we all deal with insecurities, family tragedies, illness, and everyday stresses (of course I have my own story with tough times, not all pleasant), but in reading your blog, I get teary and realize what a truly compassionate and strong person you are. I want to thank you for opening up and sharing a part of you... this will not only help you, but all of us! And, I don't judge you on looks, I don't judge anyone on looks, so do not be afraid to show yourself here... we all have had weight gain and alot of us major weight gain from meds and lack of movement. Myself included, I keep saying I may need a bigger car because the junk in my trunk has now overflowed into the car :)... God Bless you and thank you for your friendship ♥

    ReplyDelete
  5. I would like to honour you with the Fibro Fighter Award (http://fibromodem.wordpress.com/the-fibro-fighter-award/).

    Congratulations! Please feel free to recommend other bloggers whom you think worthy of this tribute

    ReplyDelete

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