Jaime's husband had told me his wife had broken her back a year ago and was in a lot of pain from it. He told me she had Diabetes and Hypothyroidism resulting from her back injury. My heart sank as he told me this. Although I am young woman, I have a superior understanding of pain. I knew that like my husband, Jaime's husband sympathized for her, but until you've felt pain this severe, you cannot possibly understand. What he described sounded exactly like Fibromyalgia. My brother broke his back. He did not feel pain a year later. It seemed unusual she DIDN'T have Fibromyalgia. He told me later she went to see a doctor about the pain. The doctor thought it was Polymyalgia Rheumatica or Fibromyalgia. I prayed so hard it would be the first one. The first one hurts, but it's treatable. You take Prednisone for a while, and it's gone. There is no treatment, cure, or hope for Fibromyalgia. It's for life. Jaime's husband told me the next day it was Fibromyalgia. My heart dropped. I couldn't wish that on my worst enemy, let alone for Jaime. I felt an even deeper connection as I gave her my condolences.
Being diagnosed is scary. Being diagnosed sucks. With Diabetes and most diseases, there's usually a target range. You're at higher risk if you're African American, Native American, a woman over 40, White, blah blah.... Fibromyalgia doesn't care. While it does have some "sometimes" and "maybe's", Fibromyalgia doesn't care if you're white, black, blue or purple. It doesn't care if you're rich or poor. It doesn't care you're 12 or 97. It doesn't care if you're a man or a woman. It doesn't care if you eat well or not. Exercise six days a week? Doesn't matter. There is no safety. There are no preventative measures. It is a predator. No warnings. There is nothing you can do, but once it has you in it's jaws, it will never let you go.
Meet Jaime:
BIO – 2013
Jaime Raffaell was born in Michigan in 1968. She’s traveled extensively teaching English in Europe before she was 16. She attended Oxford University when she was 14 on a scholarship. She attended Oklahoma Christian College where she met her husband of now 23 years. They lived in Oregon, Colorado, and finally settled in Idaho to raise and homeschool their six children. She is a genealogical historical writer by trade, but works from her home as a Director of Operations for a Seattle based company that specializes in hiring the disabled and American Veterans.
Jaime was diagnosed with Fibromyalgia in December of 2012.
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Jan 2013
“My mommy’s broken again”……Wow there’s a sentence every mom wants to hear when her youngest sees her struggling to get up from the couch. Maybe there’s a support group…”Hi my name is Jaime, I’m 44 years old and I’m broken again”… In the past 19 years I’ve broken 37 bones, some even twice (ever get into a coughing fit and break a rib?, not fun). I do not have a bone disorder. I do not have weakened bones due to osteoporosis. I’m basically a klutz with really bad luck...or so I thought. I am an executive in a nationally known company that hires disabled individuals and helps them set up their work at home offices. I support the disabled, but I never considered myself disabled.
In 2011 my family was coming to visit our new home. Excited about our first “company” I decided to steam clean the carpets to make everything fresh from the move. I was doing fine using the machine until I pulled back and heard a snap. BAM twinge of pain up and down my spine that would have dropped an elephant. “Great Dummy you pulled your back out again”…. For three weeks I couldn’t stand upright and sort of just hobbled through my day self -medicating on heat packs, Advil and sheer will. My 80 year old Grandmother came to visit and offered me HER CANE because I looked like I needed it more than her. After the visit and company left I decided I couldn’t take it had to see a doc, thinking I’d pulled a muscle and well maybe I’d have to break down and take some muscle relaxers. I’m notorious in my family for ignoring pain, “ah it’ll go away, I’m fine.” Yeah I wish it was that simple, turns out I had broken my back again only this time in four places (with little bone shards showing in the x-ray). I had been walking around one bad step away from never being able to walk again. By the time they did the surgery I had been dealing with the constant pain for almost 65 days. But I never missed a day of work, because that’s not me; my “discomfort” was not going to inconvenience anyone.
Long story short, surgery went fine. I was walking normally within 2 hours of the surgery. When I got home I had to learn to take it easy and my kids (all six of them) had to learn that “mommy was broken and you need to help her”. Two months after the surgery I was hysterical from not sleeping well, my legs had swollen up like an elephants and had tremors that made my husband start sleeping on the couch and I had a constant burning pain in my arms, upper back and shoulders. I got sent in for more “tests” (don’t we love that word), and was diagnosed with a thyroid problem and diabetes. But nothing that would tell me what the pain was. I kept getting told, “your over reacting”.
Ok so ask yourself how does a broken back turn into all that? Apparently a body can by traumatized by surgery and that’s what happened to me. So for the past year I’ve been on a roller coaster of meds, and weird pain in places that never hurt before. But they would not prescribe anything that actually solved the pain problem.
After a year of the medicine roulette, the pain and tremors became even worse. I couldn’t sit or stand for more than 30 min at a time and I now had to use a cane to get out of bed in the morning and a rolling walker to get anywhere in my one level house. I had to set an alarm to roll over every 2 hours or my legs would lock and I’d be screaming. The most embarrassing thing? Sitting down to go to the bathroom and realizing you’re stuck and can’t stand up because your legs give out and you fall. Trust me when I say your 20 year old son does NOT want to hear “help me” coming from behind a closed bathroom door.
Doctors kept telling me “lose weight you’ll feel better.” Ok I’ve lost 75 lbs and I feel worse, even more depressing my Wii fit age is 93………...93!!!!
Finally three weeks ago I told the doctor I can’t take this, I’m not a wimp and this is bringing me to my knees with pain in my joints, shoulders, neck, knees, everything hurts. Dr. Poke n Prod, who’s favorite question was “does this hurt?” decided that, after I threatened to rip of his leg and beat him senseless with it, maybe we need to see if what we’re dealing with wasn’t related to my back injury.
You guessed it, two days after Christmas I was diagnosed with Fibromyalgia. Great now what do I do? I know NOTHING about this disease and he prescribes a medication I’ve never heard of and who’s side effects he described would make my mood swings seem like PMS ON STERIOIDS. He then asked me if I owned a gun (I kid you not).
So here I am still in pain, taking these psychotic drugs (which by the way if you weren’t depressed before would make you depressed now and causes muscle stiffness). Every day I take my pain temperature, do I want to hurt someone or just hide in the closet? I still have never missed a day of work, still grocery shop, homeschool my four remaining boys, support a daughter in college who we drove 3800 miles round trip to deliver to West Virginia last summer when she was in a car accident on her way out there.
What I’ve learned so for is that Fibromyalgia is NOT for wimps. Sufferers are known to have some of the highest pain tolerances doctors are baffled by. You hurt so bad you want someone to stomp on your foot with spiked heels just so you have something to laugh about. Nothing helps, there is no “cure” there is no special pain medicine that makes you all better. You just hurt, 24/7 even in your sleep. Some days it’s a dull ache that’s there in the back of your mind as you go through your day. Other days the pain is so intense you want to rip your own muscles out to make it stop. But what Fibromyalgia can’t do is take your determination. Most people who have the disease are looked at by society as weaklings that are just hypochondriacs looking for a pill hand out. Which ok it might have looked at it that way IF there was a pill that fixed it. But there isn’t one. Normal pain medicines (Percocet, vicodin, hydrocodone, morphine) do not relieve this pain. The Lyrica commercial is just that, a commercial. There is no dancing freely running through a park in your future. You learn pain management by dealing with the pain both mentally and physically. And by pain I’m not talking about a headache, or labor pains or stomach cramps or a pulled muscle. I’m talking about a type of pain that has you considering surgery with no anesthesia because it would hurt less. Kidney stones are the equivalent of acid indigestion compared to what we feel.
When you pass me on the street, I won’t “catch your eye” because I’m disabled. Chances are you would never notice me or even know that I have this disease unless you ask me. Fibromyalgia is invisible to the world but it’s VERY real to those that suffer from it. I challenge anyone without it to get repeatedly stung by a taser every hour for 24 hours to get a glimpse of what a Fibro sufferer goes through in a normal day.
We are mothers, fathers, caregivers, working women and men, productive members of society and we suffer in silence because we are FAR from being wimps. There is no telethon, no national society funded research project with critical acclaim for us. We are a silent band of our own kind of superheroes. When you meet someone who has Fibromyalgia, don’t wrinkle your nose in disgust thinking they are whiners, instead applaud their efforts for getting up, getting dressed, getting dinner on the table and getting on with life. It’s harder than it looks, trust me.
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