I saw the "hand specialist" last week. My rheumatologist called him that but his real title is "surgeon".
I can deal with the surgery. If it's needed, it's needed and that's all there is to it. We'll get it over and done and I can get on with life. He said I'm not in the best category for it to be successful since the nerve damage may be permanent already, but if it doesn't get any worse than it is now, I can learn to live with it. "All better" would be the best situation but I'd settle for "no worse". I asked him why he didn't do both hands at the same time and he replied, "Because if I did, you wouldn't be able to wipe your butt". Ooooooooooooooooooookay. That's logic that I won't argue with.
Then there was the hard part. I've suspected it for awhile but it still felt like a kick in the stomach to hear that I have Rheumatoid Arthritis. The blood tests show negative but he said that happens around 15-20% of the time. When he does the surgery he'll get a tissue biopsy that will be a little more conclusive. Even without the test results, my hands tell the tale. My fingers have all three of the stereotypical RA deformities already as well as rheumatoid nodules. It's the nodules that are most concerning since they will grow in internal organs such as the heart, liver and lungs. With my auto-immune issues, I'm prone to nodules and cysts anyway (14 in my thyroid alone) so I'm willing to bet that the heart and lung nodules are already there.
I see my rheumatologist later this month and we'll start being a lot more aggressive. Actually, I'm considering finding a different rheumatologist because she *hasn't* been more agressive already. I'm going to insist on an MRI on my hips as well as one to find out where the nodules are. There's no cure for RA so my only hope is to slow down the progression and that means early and aggressive treatment. I wear hand splints now but there are finger splints that can slow down the changing shapes and I should have been in those a long time ago. We'll be discussing DMARDs too but I know we can't start those till after the surgeries are over. I think there's a lot more that she could be doing and we're definitely going to start doing them now. If she isn't willing, then she'll be replaced. I'm also seeing a new internist with hopes that maybe she can see the whole A-I picture and maybe treat me as an entire person instead of a specific body part or disease.
It could be worse. It's not a fatal disease even tho it does effect mortality. I understand that on the average it can shorten a life span by 10 years, more if the rheumatoid nodules are present. Yet it's still difficult to come to terms with knowing my expiration date has been moved up and the quality of life I'll have up to that point probably won't be the greatest.
Been crying a lot but I think that's normal. I grieve for the silly shit............like how I used to be so proud of my hands. They were my one vanity and so perfect that I could have modeled them all the way into my late 30's. I wore rings on every finger and had more bottles of nail polish than a Revlon factory. My nails were shaped perfectly and grew long without even trying. Now I look down at my hands and see aliens. I'm also upset about deciding to cut my hair. There's no way I can take care of 4 feet of hair with one hand while the surgeries/recoveries are going on and even tho my hubby would willingly help it would only prolong the inevitable. I'm having a hard time handling a brush and braiding it now. There are days that the weight of it hurts my scalp. So I'm going to look for a short style that's wash-n-wear and take comfort in knowing that Locks of Love will have enough hair to make wigs for several kids. I already feel sorry for whichever poor beautician gets me in the chair because I know I'll be sobbing the whole way thru it.
See? That's all silly stuff. But it's easier to think about that then to think about losing my ability to create. Mother Goddess, please don't let that happen. Creating isn't what I do, it's who I am. It's my heart and soul. If I ever lose the ability to create it would be the loss of my spirit.
*deep breath* Not gonna happen. I'll find a way...............ANY way...........to keep the creative process going. There are work-arounds and I'll find them. I don't like this and I don't want this, but I've got it and there's no changing that. I can either deal with it or I can sit here and cry. I don't like to cry, it makes me tired. So I'll deal with it and adjust and always, always, always keep looking toward the next project.
There are lots of those too! I'm waiting for supplies to arrive for a custom Pierce that is going to be simply heavenly.
Those are the things I'm hanging on to. As long as I can look even one month ahead, or even one day ahead, and see myself building a dollhouse or dressing a bed, I'll be okay.
I've definitely gone past my limit on the keyboard tonight and ended up saying a lot of things I hadn't intended to say. What is it about a blog that makes you feel like you're talking to yourself even when you know the whole world could be listening? I thought about deleting it, but decided to just let it go. It's not a cheerful post but maybe in a few months I'll be able to look back and say "See? Things turned out better than I thought!".
I have a couple of awards to pick up and will do that soon. Thank you to Corwin and Casey! Oh, and I'll try to sneak back on here tomorrow and tell you about a really cool contest being held on the Greenleaf forum. It's all very light hearted and fun!