This is just one of the effects of Lupus.
So many people don't understand Lupus and it's devastating effects, myself and the doctors. I am slowly writing about some of my experiences with it. For me one of the most devastating effects has been the deterioration of my hands. It started out as a stiffness then I noticed some of my fingers started snapping and then they were slanting into each other. I tried using some silver ring splints and they helped for awhile.
The gave me a brace for my right hand and that helped me be able to go on working and doing my art, then the left hand got worse and now the second brace. As you can see in the second picture the ligaments are gone in the right hand and going in the left. Recently the OT gave me some exercises to help my muscles since using the brace has made them weak. This week the knuckles have disappeared because of swelling and typing makes it worse, I probably made it worse by too much exercising of them too.. I am afraid of loosing the use of my fingers altogether and not being able to create again. I'm giving them a break this week because they hurt just too much and am hoping and praying that by next week some of the swelling will have gone down.
Lupus has effected not only my joints and the connected tissues but my intestines, my eyes and and mouth with Sjogrens Syndrone (related to Lupus) Then there is the damage that all the medications I'm on is doing to my liver, kidneys and heart (now have high blood pressure) damage to the retina in my eye and Osteoporosis. I'm on the same medications that was used It's sad that this disease does not get the attention and funding that some of the other diseases get.
It's hard for people to understand because to look at me you wouldn't know all this is going on, and on the real bad days I stay in, sometimes it's a long period. Even so..I'm still trying to create. I'm looking for and trying different ways and things to assist me in creating. Just last week I signed up for Jude Hill's Spirit Cloth quilting class! I know..I'm a glutton for punishment but I'll try it.
I think the hardest part is not knowing how bad t his will get. Will I become a body with dangling appendages?
I'm writing this to bring attention to it but also to explain why I sometimes disappear for long periods and hope people don't give up on my blog..or my art. Any art I do I will price according because I do very little now and some pieces I won't sell, but will sell prints of it. I know God has a plan for me and if it isn't with my fingers then something else..I just have to remember that.
I arrived via Jude's blog...my heart goes out to you. Bless you for sharing this...so important to raise general awareness of this disease.
Posted by: Suzanna | March 07, 2011 at 10:24 AM
How brave and wise of you to present yourself, as you are, to the blog world. You can build bridges and stay in the stream of life, no matter what happens to you, through your blog, and with your mind and spirit. Good luck to you. I can see that despite your illness, you are a joyous and positive person at your core.
Posted by: Julia Moore | February 28, 2011 at 09:00 PM
wow, this totally sucks! Hang in there! My wife Kate is a confirmed believer in the role diet plays in maintaining/restoring health and reversing degenerating diseases. It does take a huge commitment to radically change one's diet and other life style habits and most don't want to got that way. Check out KateKilmurray.com to see her web site.
love and many blessings,
arthur
Posted by: Arthur Kilmurray | February 26, 2011 at 07:37 PM
Hi, Judy! One of my cousins has lupus, and my best friend's mom during my growing up years also had lupus. It is so hard!
I haven't suffered anything like that, but I did break my ankle very severely in 2000, and it took nearly 3 years before I could walk well and push my own cart at the grocery store.
People couldn't tell, though, just by looking at me. And many of them thought I was "making it up" that I couldn't walk well. I still have permanent soft-tissue damage and have bad days and good ones.
Anyway, what I'm trying to say is that I understand what you mean. About people not understanding. Or thinking it is all in your head. About them saying things like "Well, you look fine!" when you feel awful! It is so hard to get support and understanding sometimes!
Good luck! You're definitely in my thoughts and in my heart.
Posted by: Anne Gaal | February 25, 2011 at 12:20 PM
I am sad to read of all the trouble you are having. I know just how hard this disease can be. I had two aunts and a cousin who had lupus.
I will keep you in my prayers.
Posted by: Beverly | February 23, 2011 at 04:15 PM