In my first year and a half of being sick I was led to believe that I had Lupus. When I read that sentence back I see that I sound angry. I’m not. It was just so hard to think that you have something each day only to learn one day that you probably don’t. With autoimmunity, it’s really hard to pin down a definite diagnosis. Most people it takes years to get one, and usually people have more than one autoimmune disease. My last labs came back with my first positive RA factor, so now my rheumatologist is leaning towards Rheumatoid Arthritis as my primary disease. I also have palindromic rheumatism, dermatomyositis, and peripheral neuropathy.
I consider myself to be a huge advocate for Lupus and I always will be. I’m a lupie at heart 🙂 I’m an e-advocate, which basically means writing to our senators and congressmen on behalf of the people. I receive alot of updates all the time which I am going to be passing on here. If we can find a cure for Lupus, we can find a cure for all other autoimmune diseases!!!
Each second Wednesday of the month there is a live Lupus Chat at lupus.org. This week’s chat is going to be on Staying Healthy in the New Year. You should check it out. They are a chance to ask the experts anything you wish pertaining to the disease. (for free, take advantage of that!) Here is the link.
As you can tell, this site is under construction…. Today is the day that I finally go back to my rheumatologist and talk to him about the methotrexate. I can’t tell if it’s doing any good at all as the side effects seem to outweigh any potential benefits. It’s been almost 2 months now and I don’t see any difference in my ‘well being’. The metho actually hurts me and makes my bones feel like they are frozen. Let me know how it affects you. Has it helped you at all? How long did it take?
T minus 1 hour and 45 minutes until the pharmacy opens and I get my refill of pain meds and anti-malarials and cancer medicines. I find that so freakin alarming that my life revolves around pharmacy store hours, and yet, how do I survive without any of these medicines? You notice I say anti-malarials and cancer meds. I don’t have malaria or cancer. No one has found a cure, or even a medication that is specifically for autoimmunity. No new drug has even been on the market for 40 years, I don’t get it. If I decide not to take the meds, well then, my body just attacks the shit out of itself and eventually I die. But while I’m waiting it’s pain city as my cells attacks all of my good cells and it really, really hurts. OK, after the pharmacy opens my posts won’t be so darn melodramatic, lol.
If anyone is out there with some methotrexate experiences, drop me a comment. I’d love to hear about how it affects you.