and some major changes have taken place since I last posted in April.
Back when we last touched base, things were going pretty well. I was feeling OK, and my rash was improving. I was feeling hopeful, because I had decided not to start taking CellCept and was pleased that my symptoms were getting better anyway. I was going to yoga a couple times a week, having weekly acupuncture, and had closed my business as a way of reducing stress, and it seemed that these alternative solutions were really helping.
Until...
I took a weeklong trip to Florida to visit my dad and step-mom, followed by a weekend trip to a beach house with friends. I'm not sure if it was the stress of travel, or too much time outside in the sunlight, but the week after I got home from the beach, I became very sick. Severe aches and pains head to toe, low grade fever, fatigue, and the rash got a lot worse - face, neck, torso etc.
Now, those of you who have read this blog will know that I have seen multiple doctors of various types over the past 2 years. I was starting to feel a little silly changing doctors so often, and was not planning to change again. I was happy enough with Dr. C, a rheumatologist in Philly (2 hours away...) who also does acupuncture, but we ran into a problem...I got sick and couldn't get in touch with my doctor. I called the office 3 times over the course of a week as I started feeling sicker, and didn't get a call back. This really started to freak me out. I think they did call me back once, but didn't leave a message, so I'm not sure it was them (restricted number).
Anyway, the point is, I was off to find another doctor. A few months ago, I spoke with someone who said she thought there was a holistic rheumatologist in Long Branch, which happens to be 15 minutes away from my house. I sortof blew this recommendation off at the time because 1. I already was seeing a doctor I was happy with, 2. she didn't give me the doctor's name, and 3. I was a little skeptical that there could be a holistic rheumatologist in the town next to me when I'd been driving all over hither and yon trying to find a doctor I liked.
So, imagine my surprise when I did a little googling and found Dr. Arthur Brawer, holistic rheumatologist in Long Branch. I called him, and was able to set up an appointment for the following day (loved it, he answered his own phone...).
I went to see Dr. B, and was so happy with him. He really is a holistic rheumatologist...I was shocked.
Unfortunately, now that my year and half long quest to find "the one" [doctor], my sickness had progressed to the point where taking the drugs I had feared was now unavoidable. There have been so many instances of irony involved with my lupus so far, and this is just another one. I'd finally found a holistic doctor who is often willing to treat lupus without stronger drugs, but for me, he's recommending I take Imuran (an immunosuppressant drug).
And at this point, I decided to listen to his advice.
Why now? Why listen to this doctor when I'd ignored experts in the field and other rheumys before?
Because I trust this doctor and his philosophy of healing. I know that if he thought we could avoid this medication, we would, but at this point my health had deteriorated to the point that things were in crisis mode.
If you've read this far, I applaud you, narration is almost over, I promise...
I began taking a low dose (50mg) of Imuran 3 weeks ago. I returned to the doctor 2 weeks after my initial appointment, and he was thrilled with the progress, even though Imuran generally takes 4-6 weeks to kick in. My skin was greatly improved; it had gotten so bad that Dr. B was concerned the skin wasn't performing its important functions of temperature regulation and preventing dehydration. He said it was so bad that some doctors would have recommended hospitalization, so the improvement was a relief to us both.
I'm feeling physically better as well, though I am still pretty achy and fatigued. I don't really leave the house much as I'm trying to avoid the sun as much as possible and it is also pretty exhausting, even just going to dinner or running and errand or two.
So that's my giant update...more to follow sometime soon on the emotional effects this is having on me and my family, trying to raise my an almost 3-year-old son without being able to take a walk or play outside...
