I've been gradually feeling better of the last month or so which is a great relief. The rash on my skin continues to improve slowly, though I wish it would just go away. It is not itchy or painful, but it is unsightly.
I went to see a new dermatologist, Dr. W, a couple weeks ago, and the visit threw me into a bit of a panic. My mother came with me, and she was a bit shocked, she hadn't realized the extent of my rash. The doctor was thorough and is one of the top doctors in the study of skin lupus. Unfortunately, her recommendation for treatment really threw me for a loop. As I had been feeling better, and things were moving in a "getting better" direction, I was surprised when Dr. W recommended I start taking CellCept, an immunosuppressant drug. I was really taken aback, this is a step that I had been dreading, and it really feels like crossing a line that won't be easy to get back over.
She recommended this drug in order to try and get me into remission. She also talked about the possibility of future kidney damage, which really scared mom (and rightly so, the possibility of kidney involvement is not something I take lightly), although I wasn't as concerned because earlier in the week, my rheumy said my tests were nothing to worry about. I plan to address this discrepancy with Dr. W when we get a chance to speak on the phone.
I was upset by this appointment. I am not ready to start immunosuppressant drugs. It just completely goes against my natural health philosophy. It just doesn't make sense to me to suppress the very thing that is supposed to be keeping me healthy, even though the immune system is all out of whack and turning on itself...
It was a very rough weekend...every time I thought about going on the CellCept, I got upset all over again. And I knew my mom was very concerned, so that was a bit of an added complication as well. Mom and I spoke a few times over that weekend, and by Sunday I was feeling better. I had decided that I would give my way a fighting chance for 6 months before going on the stronger drugs. Mom was in agreement that this was an OK path to take, as long as Dr. W was on board. I'm still playing phone tag with Dr. W. The questions I need to address include how strongly she feels that I should go on the CellCept, and what specific indicators she mentioned that indicated the possibility of kidney involvement.
I'm hoping the Dr. W will be OK postponing the CellCept for a few months. I can do tests to make sure the kidneys are not having problems, and if I start feeling worse, I will re-evaluate.
So far, I've been doing fairly well with my lifestyle changes. I recently stopped working (see previous post), so the stress from running our shop is considerably less. I stopped nursing my baby, so that's one less stressor on my body. I joined a gym and have been going to yoga a few times a week. I've been going to acupuncture 2 times a week as well.
My biggest challenge is healthy eating. My willpower is weak (to say the least) when it comes to food. My goal is go have a diet that includes more vegetables and fruits, less sugar and white carbs, and a moderate amount of meat. Unfortunately, I crave sugar and white carbs. I am going to start seeing a holistic nutritionist soon, and am hoping she will be able to help. I found a course at a yoga center called "Healing your relationship with food" - it sounds perfect, but I won't be able to attend this year...but maybe in the future.
These are pretty big changes in my life. I am really working on my mind/body connection, and have put my faith in these alternative solutions. Any positive thoughts pointed in my direction are appreciated!
