Diss ease and diagnoses

20. December 2011 by Gennyfer.

Here’s the thing. It’s hard for me to talk about how I feel physically. With anyone. Including medical professionals.

When I was tiny, probably 3 months old, I’ve been told, I broke out in multiple skin rashes. This was second, after I had failed to save her marriage, on a list of things my mother used to explain how or why she was indifferent to me.

While I was a child, whenever we saw a child in a wheelchair or with obvious developmental problems, my mother would say they must have done something awful in a past life. Illness of any kind was your own fault in our house. When I was about 10 I started limping. It was not OK for my mother to have a child show signs of being defective. I was told not to limp. I remember being queried by an adult in our town about why I was limping. I wonder what he thought of my look of terror and stammered denial. “I’m not limping.” Eventually my grandparents and aunt and uncle stepped in and I went to a doctor. A lot of doctors. I had a tumor in my bone that I’d grow out of by young adulthood. It hurt. A lot. I got used to pain.

It was pain in that leg that sent me to a specialist 19 years ago. The tumor was gone but, the pain kept coming back and it hurt in other parts of my leg. I was told to take OTC painkillers as needed. Looking back, this was the first time I went to a doctor for a symptom of Fibromyalgia. It took me until this month to be diagnosed with Fibromyalgia. I was trained not to show pain or talk about it. I didn’t talk enough to my doctors over the years. I mentioned a symptom here and there but never gave enough information.

I did the same thing with my husband. The thing is, the pain has increased to the point that I couldn’t keep ignoring it. Well, it’s me… I could have kept ignoring it but, I realized how much it effects my quality of life and, finally, decided something needed to be done. I was hoping for an operation to cut whatever was making me hurt out and then I’d be done. I decided to keep a pain journal to show my doctor how and when and where I hurt. I sent a copy to my husband in an email for back-up. He was really upset. He called my doctor and freaked her out a bit too.

This upset me. It kind of shoved me out of my comfort zone. Can someone in chronic pain have one of those? Once the cat was out of the bag I had to follow through with getting help. With my long list of aches and pains in hand I finally talked to someone who could help. And I have only had one mild headache, rather than daily, in 2 weeks. The leg that had the tumor has only hurt a few times this week. I still have a lot of pain but any lessening is a gift I cherish. And thanks to my pushy husband, I am on the road to making myself feel better.

So, I will post this, and link it to my FB page, and hope no one reads it, because it is hard for me to admit that I hurt. But, in case my dear friends run across this, I want you to know that this is why I’m not great a reciprocating invitations. This is why I bail on being seen in public, too often for my own good. This is why I’m often too tired to bother showing up despite knowing I’d have the best time out with you. I don’t mean to be this way. And I don’t, ever, want to miss out on enjoying time with you. Lest you all feel sorry for me, though, I do have a bunch of really wonderful people, in house, I get to see all the time. I am blessed to have them in my life.

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