Tuesday, October 13, 2009

Finding my way back

Poor little neglected blog. It's been so long since I've been here that I almost got lost on my way. There have been a lot of things going on lately and unfortunately I've had to limit my time at the keyboard.

I saw the "hand specialist" last week. My rheumatologist called him that but his real title is "surgeon". I'd held off as long as I could but will power can only do so much. I had hoped that he would have some other tricks up his sleeve but that was unrealistic wishful thinking on my part. Surgery is the only option and it's required for both hands. He'll do the left one first and then the right one after the left has recovered. I was hopeful that it would be an endoscopy but he killed that dream too. (Nice guy but he was hell on my high hopes) He's going to have to do an open incision on the palm which means a longer recovery time. He said with the myofascia problems I have with my muscles the recovery might be longer than 6 weeks per hand. Hmmpf. He don't know me very well, do he?

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. It's going to be southern and as a misplaced southerner, that makes me sooooooooooo happy. Building this house will be like taking a trip back home. I think I can get the building part done and be down to the detailing before the surgeries start. I'm pretty sure I can shingle with just one hand! And then I have three big furniture orders............one for an elegantly gothic witch, one for the world's biggest Garfield and one for a bed and breakfast........and I'm going to fit those in too. I'll have one hand at a time and I'll learn how to be left handed if I need to! After those are done, I'm building a Tennyson for myself and then a Victorian Rosedale for another customer in the summer.

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!


  1. Deb!Thanks for telling us what is going on, but take it easy on the typing! Hang in there. Just think about how much better it will be when they fix what's wrong. As for the hair, it will grow back. Good luck with the surgery!

  2. Really hope that in a few months you can look, as you say, to this long post and think that finally was "better" than "worst".
    My father in law also have Rheumatoid Arthritis and I have met many young people as well and not an easy road but you can minimize the disease, through many things than you can do although yu not beat it. Willpower, patience and lots of encouragement.
    With shorter hair you'll be pretty for sure.
    Take care!

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  4. Hi deb,I left you an award on my blog www.lidilstuff.blogspot.com
    Now you must get better, I am worried about you.

    By the way the worlds biggest Garfield, that mine. Grinning.

    Take care and take it easy deb!



  5. So sorry to hear of your health issues. I hope your soon feeling better..

  6. Thanks for sharing your struggles. It give me more reasons to be thankful for each and every blessing I have. I work for a Rheumatology practice and I have seen great things with some of the newer medicines for RA. I'm sorry you will need surgery but hopefully that will help in the long run. I'll be thinking about you and praying for you.