Wednesday, May 13, 2009

My Fibromyalgia Story, Part 3

...continued from previous 2 posts.

January 29, 2008, I walked into the rheumatologist's office extremely nervous. I signed in, filled out paperwork, and quietly waited my turn. I was hoping for a slight wait so that I could sit, breathe, and calm down. But instead they called me back very quickly {sigh, the one time I really didn't want them to!} and I saw the doctor pretty quickly. They also had to tell me to calm down because my blood pressure was through the roof.

Well no duh, if I could rest a bit that'd be good.

He did all of the official testing for Fibro. He checked to see what had already been ruled out. We went through my symptoms and history. He did the pressure point test for Fibro (where you have to have pain in 11 of 18 areas for 3 months or more; I had pain in all 18 areas for 17 months) and the checklist of symptoms (where you have to have a list of certain symptoms in 3 out of at least 10 of the areas; I had pretty much every symptom). So he stepped back and said,

"You have Fibromyalgia."


I thought those words would bring relief. Instead I felt overwrought with sorrow. It was official. It was real. It was overwhelmingly real.

Oh. my. word. I. thought. I. was. gonna. die.

It was a relief to have it over with, and as I felt my blood pressure lessening and my head stopped spinning, I took the information handed to me including orders for further blood tests to rule more things out, scheduled a follow-up appt to go through the blood test, went downstairs to request the blood test, found out I had to fast for it so the lab sent me away (despite doctor's orders to take it anyway), scheduled it for the next morning (if I remember correctly), and I exited the building while sobbing and hitting hubster's work number on speed dial.

Click here to read my official diagnosis post one month after.

I went back to work and shared my diagnosis with my close family & friends. One friend was quite surprised by my difficulty with having a diagnosis. I know it's hard to understand why I reacted that way, but now after reading more Fibro blogs, I know I'm not the only one. You feel relief, yes. But you also feel a sense of sorrow as you mourn the loss of your old self, realizing life will never be the same again. Yes I was glad to be sure and have a name for all that pain and misery. But this friend, who'd struggled with her own diagnosis for some time, had every test in the book and no answers or ways to alleviate the pain, couldn't imagine my difficulty in getting the official diagnosis. What she said to me though, was very much what I needed to hear that day, reminding me to be thankful to even have the diagnosis.

Thank you sweet friend, you know who you are.

So, I prayed hard, ate too much food in my sad state, and picked myself back up off the floor, dusted myself off, and started looking toward the next steps to take now that it was official. I slowly started telling more and more people as the year went by and as my other coworkers urged me to do so for continued understanding and support.

I remember being really, really, ridiculously nervous to tell my previous boss. I was so scared. Shaking in my boots. Thought I was going to die. He and I had many past disagreements as our personalities clashed, but I also thought highly of him and knew he's a man of integrity, faith, and I have a lot of deep respect for him. And of course, my fears were once again unfounded, and it went very well.


After that I started telling pretty much everyone, specifically at work as we approached a big conference I'd be attending (and on my feet a lot; after 2 yrs of attending previous to this, I decided I needed to be more vocal because faking it was only making it worse, and I was tired of crying all the time in pain behind closed doors when the long, hard days finally came to an end; then spending days after getting back home so sick I was sure I was going to die). I have now lost track of who knows and who doesn't know. Please don't take it personally; I'm not not telling you on purpose!

Telling people had its bad things. I didn't want people to feel sorry for me, think that I couldn't do my job anymore, think less of me, or misunderstand it. I didn't want everyone researching and coming out of the woodwork telling me this thing or that thing that they found, most of which I already knew. At this point I'd already located practically every book in the library about it and a ton of online articles and medical websites. I didn't want it to come across like a complaint or oh woe is me, so I spent a lot of time praying about telling each person. Some people found out on a whim because I knew if I overthought it, I'd never get around to it or would be too nervous to face them without getting super dizzy and feeling faint.

Telling people also had its really great things. It was freeing to have people understanding me better, helping me out where needed, befriending me and encouraging me, covering me in prayer, and learning more about it for their own sakes so they knew what to do/how to help/how to encourage or pray for me.

I'm so appreciative of all the wonderful people in my life: family, friends, coworkers, blog friends, old friends I've found on Facebook, and so on. This journey certainly has had its ups and downs, but I'm thankful to have so many great people by my side.

To be continued...


Marj aka Thriver said...

Thanks for sharing your journey with us and thanks for stopping by my blog with a comment. I wish you much healing and comfort.

Julie V. said...

Dear Roe,

Thanks for sharing your story. I could never begin to imagine what a person with a chronic illness such as Fibromyalgia goes through from day to day. It just blows my mind the amount of pain you endure moment by moment. I know I would have a lot of similar feelings of feeling depressed about the situation.

Thanks for your honesty and for allowing others a peek inside your life.

Praying for you.


Anonymous said...

Thank you so much for having the courage to right your blog. It means more to me than you will ever know to know that I am not alone and that others understand.