Friday, October 19, 2007

Flash back to elementary school: the teacher tells us that we have to go to the nurse's office. We line up outside the door, no one quite sure what's going on, everyone asking the people near them what we're doing. One by one we're called in and told to take off our shirts and lean over. Mortified, but a 'good girl' who did what she was told, I did it. I only later found out that the nurse was screening for scoliosis, and that my parents had signed a permission slip, but not thought it necessary to mention it to me.

The nurse made a list of those who she thought might have scoliosis and should be screened by a doctor. I was on the list. The doctor actually came back four times. Four times I had to take my shirt off in front of a man I did not know and lean forward. I remember just how I felt, how sick and embarrassed and violated.

The doctor eventually decided that my spine was ok.

Wrong.

It started with shoulder pain. Then back pain. My parents brought me to doctors who told them I was having growing pains. Then the pain spread to just about every part of my body. I went to more doctors than I can count. One, a rheumatologist, diagnosed me with fibromyalgia, a relatively new term at the time, when I was twenty-one.

Wrong.

For almost 20 years I have been fighting to find a doctor who would pay more attention to what I was telling them than to an old diagnosis. I would tell them that I could feel something structurally wrong with my body. I would tell them the story of the scoliosis test. Every single doctor ignored what I had to say and tried to explain fibromyalgia - something they don't really understand and have no idea how to treat - something they essentially made up because they don't know how to explain a group of symptoms - as if I was just not that bright. As if my pain was not as bad as I said it was. As if I was looking to score pain killers. As if they understood my body better than I did.

Wrong.

No one would give me an MRI. I literally begged for one. I was repeatedly told that it was not necessary because fibromyalgia does not show up in any screening methods. I told them I do not have fibromyalgia. They didn't believe me.

Wrong.

Finally, finally, when I had a new pain that was causing me to scream out in my sleep, I went to a doctor who agreed to send me for an MRI of my hip, pelvis, and lumbar.

Guess what? I have scoliosis. It has led to at least two herniated discs. I'll have an MRI on Wednesday to find out what's going on in my neck and thoracic area. I am convinced they'll find all sorts of things in my mid-back, which feels like it has fallen to pieces.

So I'm looking at surgery, and just maybe the incredibly new experience of living without debilitating pain. I can't quite imagine what that would be like.

10 comments:

Jean said...

This makes me sad :( But happy, too. I can't wait for you to feel good. I love you!

Deanne said...

I'm so sorry that you suffered for so long, and couldn't get the treatment you needed to feel better. How horrible! I hope that you get treatment that will eliminate the pain for good.

kelli said...

OMG Rue. :(

I hope they can help you now.

love from us~

Zenmomma said...

Oh wow Rue! :-( That's awful! I'm so sorry that you weren't taken seriously and have had to live with their mistakes. I hope that your symptoms get MUCH better and eventually disappear.

Much love.

piscesgrrl said...

That's just... appalling. I'm sorry you had to wait so long to be heard. I can relate a little - I knew I had hormone issues but doctor after doctor just offered anti-depressants. I'm sure they thought I was clueless. After a breast lump scare, and a lop-my-breast-off scare, I found a holistic MD who spent 4 hours with me, took one look at my thermogram test and said, "You have a raging hormone imbalance!" I could've kissed him.

I hope you are able to find some peace and painless healing!

Penny Lady said...

Hi Aunt Rue (This is Penny) I am so sorry you have been in so much pain. I remember when we first met hearing something about it from someone.

I am happy though that now there is a real diagnosis and you can begin to feel well.

I do not know what that kind of pain is, I do however know what MILD chronic pain can feel like and it's maddening...so I can only imagine what that kind of chronic pain would feel like.

Rue said...

Thanks everyone. I really needed some love and hopeful thoughts :o). I'm feeling better now than when I posted. Hearing that they could actually SEE something wrong with me really threw me for a loop.

Glad to see you here, Penny :o). I've been reading your blog and catching up on what you guys are up to. I'm sorry to hear you have chronic pain too. I hope Uncle Bunny (!) aka Frank aka FranFranFran takes very good care of you.

Penny Lady said...

Your nephew always treats me well...better than I deserve sometimes! LOL

Heather said...

Hi Rue, I suffer from extreme,severe pain in two spots on my leg from sciatica. It is brutal. It's from two herniated disks. I take pain pills,tried shots and the mophine patch. My only option is surgery and that's only a 40 to 50 % chance of relief. There are times where i would have ended it all if i wasn't a mom. My good days are when i can walk around outside with no pain. I hope you find relief..fast1 I'm sorry you had to wait so long for someone to listen to you. I don't like doctors and your story is one of the reasons i don't like them.
p.s. I never judge anyone because when i can't walk or sit,riding a bike never bothered me...go figure!
Heather

Barbara said...

Hi Rue,

I just found your blog and am very sorry to hear what you've been through. I hope you are pain-free very, very soon!

Love Barb

PS. Jessica will be in MA tomorrow! :-)