Hi everyone. I can see there are a lot of new members here. I look forward to meeting you all and getting to know you. All my old friends are still here too. What a relief!
I've been away for a long time. I guess I needed a major break from talking about my lupus and all its cronies. I was into such a great remission that I didn't want to talk about the disease at all. I needed to feel normal for once. What is normal by the way?:)
In December of '06, my seizures became unmanageable. My medication wasn't working and I was having 4 or more simple partials every day. People were beginning to know when I was having a seizure too. They weren't the undetectable variety I was used to having. So in June of this year, I was put on a new medication. Lamictal. My neurologist said that there was a 1/100,000 chance I'd be allergic to it. Well, this IS me we're talking about. I should have bought a lottery ticket.... I had a horrific reaction to it, 8 days after I started taking it. The first 7 days were great. No seizures! Then all heck broke loose. I had a fever of 105 and a rash that covered my body, and was actually inside my body too. I came within minutes, the doctors said, of falling into a coma. They fully expected me to be in the ICU, but miraculously, I was spared that.
Hubby took me to the ER and within seconds, I was on a gurney with an I.V., and massive doses of prednisone being pumped into me to combat the reaction I was having. I don't remember most of my first 3 days in the hospital. That freaks me out still when I think of that. I was in the hospital for a week. The fever took 3 days to go away and the rash, well, here's the story.....
When I got home one week later, I had dropped a whopping 20 pounds. I had suffered INCREDIBLE diahrrea during that hospital stay because the rash that was inside my body attacked my stomach and bowels. It also hit my liver. I was a mess. I spent the next month recovering and the recovery was going very well. The rash on my skin peeled like a sunburn and it took 2 months to go away. The rash inside took about as long. I'm just now free of it all. I've put 10 pounds back on too.
That whole time, even the recovery, which should have taken much longer I was told, didn't make my lupus flare up! It was incredible. I thought I was going to be a-okay. The only issue I had was that my blood coagulation (thickness/thinness) was all over the map. My blood thinners were "freaking out". I figured that wouldn't last too long.
Well, I'm still having trouble with the coagulation. I'm getting poked twice a week (for 3 months now), because my INR goes from 4.1 to 1.1 in 3 days! Those of you on warfarin know what I'm talking about! NUTSO! I'm at my wits end with this. It's controlling my life. The other thing that started 2 months ago, is hair loss. Major hair loss. I've lost 2/3rd's of it now. Good thing I had hair like a lion's mane, or I'd be bald for sure right now. That is very discouraging. The docs say that because of the trauma I went through, hair loss is very common. It's temporary, but no one knows when it will stop. I'll be bald by Christmas if this continues..... That makes me very sad. Very, very sad.
I do have good news. News that is incredible! I haven't had a single seizure since June 12th! Not even an aura! It's a miracle! For some reason, my "reset" button was pushed! My neurologist has no explaination for it at all. He said divine healing. I should say so!! So that is something I am hugely grateful for. My liver is better than it has ever been too! My GGT, ALT, ALP are all normal. They've never been normal!
So last week, I woke up with a massive butterfly rash on my face. I never get those. I felt pretty crumby too. So up went the prednisone again and well, my remission state is over. I'm exhausted from all this. I have bags under my eyes and I'm just so tired of all the complications.
I have been wanting to write to you all for a while now. I just still didn't want to talk lupus. I wanted it to all go away forever. I know that isn't going to happen. I'm trying to stay hopeful and positive. It's very hard most days, especially with that constant reminder of "you're not well". The blood tests, pills, hair all over the house..... Does anyone else hate the reminders of what we have to live with? I feel very alone in all this. No one understands what it's like to live in this body I have. I went through this allergic reaction which was bizarre to say the least. I just feel so weird. I have no other word to describe it.
So that is what has happened this year. The early part of the year was a mixture of anxiety and depression. Which I"m not going to get into. I'll spare you all from that! I need a break. I also needed to get this off my chest and talk about it.
Thanks for listening. If anyone has had a drug allergy like mine, I'd really like to hear from you. It's rare, so I feel quite alone.
Love to all,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in, to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(stroke),Sjogren's, Raynaud's, seizure disorder, libman sach's endocarditis, vasculitis, sacroiliitis, Neutropenia, thrombocytopenia. Prednisone, Imuran, Coumidin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus