Stupid Lupus
WARNING: Long personal sob story coming atcha 
Hi guys
Yikes, it's been a very long time since I have updated this thread
I wish I could say I have just been busy enjoying life and summer activities but sadly, that is not the case
Unfortunately what has been happening is a Lupus flare. And it's a doozy
It actually started way back in October 2012...it started with a rash on my face, which is par for the course in most Lupies so it wasn't a huge deal. Then it slowly spread to my scalp, then the back of my neck, my ears and then all over my neck and shoulders and finally, the worst part, to my eyes
The rash was hot, dry, red, tight, flaky(on my scalp) and unbearably itchy!
It started to consume every minute of my life. I was constantly scratching, applying a million different type of creams, lotions and ointments. It kept me up all night long and I totally looked like a freak
I went to see my family doc in order to get re-referred to my rheumatologist. Unfortunately, since it's been awhile since I had seen him, there was a long waiting list to see him. My original appointment was actually for August
A few weeks later I got a call from my rheumy's admin and she was able to fit me in at the end of May. Ummm yes, please!
From January until May was just awful. I honestly don't know how I made it through all of that. On top of the lovely rash, I was also hit with major fatigue. And unless you have experienced fatigue yourself, it's hard to understand how much it can affect your life. I had to drag myself out of bed every morning to get Kira ready and off to school and after checking emails and doing some work, I would go back to bed and just pass out until 2 or 3pm. I would get some more work done and then it was time to get Kira from the bus stop. I made supper and then passed out again by 7 or 8 and that was my life for like 6 or 7 months.
On top of all this, on my birthday in late March, I started to get abdominal pain. I probably should have gone to the hospital that day but there was no way I was spending my birthday in the ER! I ended up going the next morning and they couldn't figure out what was causing my pain, however, they did find two lesions on my liver via ultrasound on top of having an enlarged spleen and liver
So in May I finally got in to see my rheumy and he highly recommended that I start taking prednisone, which is a steroid. The last time I took prednisone, back in 1997 when I was first diagnosed with Lupus, I gained 40 lbs in one month, my abdomen changed shape and I got a big round puffy face but it took away all my pain. So, it is a horribly fabulous drug.
So I started taking the pred and within 3 days of taking it, my rash disappeared completely, as did the fatigue! I was a new person!
It was so nice to have my life back, not constantly being overtaken by chronic fatigue and a crazy rash! I almost forgot what it was like to be normal again!
Yes, I gained some weight because of the steroids but I didn't care, I was back to my old self! Everything was all good until July 11. That morning something crazy was going on with my right eye. Over the next 24 hours, I lost about 60% of my vision in that eye.
And the worse part? Accompanying the vision loss was a horrific constant headache. Thankfully the Excedrin Migraine that my hubby picked up in Spokane a few months ago for me works great on them! Sadly, the Excedrin wears off after about 20 hours and so I am having to take them daily just to get through my day
After a visit to an optometrist, 2 ophthalmologists and one retinal specialist, it was determined that the prednisone was causing my vision loss. It had caused central serous retinopathy, which is basically fluid leaking under my retina.
I have to say, it was really scary and I had a few dark and stormy days facing this. The good part was that everyone I had spoken to thought that once I stopped taking the prednisone, it would correct itself and I would get full or almost full vision back in that eye.
So, after the retinal specialist and my rheumy spoke, they formulated a plan for me to get off the prednisone. Unfortunately, this is not a drug you can just stop taking. If you do, it can cause very serious health problems, even death. Thankfully, I had already started to be weaned off and it would only be another 3 weeks to be off of it permanently.
I am currently 5 days off the pred and not only has my rash come back with a mighty vengeance but my eye has not improved at all. Nobody could tell me exactly how long it would take for my vision to come back so I am still hopeful for that but I am now in the same spot I was back in January, battling a monstrous rash, debilitating fatigue but now I can't see crap and suffer from wicked headaches
I started taking Methotrexate about 3 weeks ago, which is the drug I took for about 8 years. It's actually a drug made for cancer patients but has found to be beneficial for some Lupus patients. I stopped taking it in 2005 in order to start a family. The bad news is that it takes about 8 weeks to start working and we're not even sure if it will even help with the rash or the fatigue.
So, for now, all I can do is be hopeful that the Metho will kick in soon and take this God-awful rash away!
My biggest fear is that all this crap will still be going on during our trip to Disney
I only have 10 more weeks to get this under control!
We've waited 4 years to take this trip and I'm a little worried that "This trip that will NOT suck" might actually suck royally! I will do my best to suck it up and make it as magical as possible for my little girl but as you know, a trip to the World is not easy on your body and here I am completely fatigued after walking
down the stairs!
Plus, I have this extra weight on me that will make things tougher and I look like a total freak
Whew! Sorry, didn't mean to unload all that on you...kinda just came out as I was typing
Anyhooo....I probably won't be doing too many updates in the next few weeks. Hopefully my next update will be all about how fabulous I look and feel
..we remember it like it was yesterday seeing you in line at the terminal and saying "i think thats Timon from the Dis"...You were a legend even back then.
.( he was really missing you guys too that week.)
, I am so very sorry to hear this news my friend. I am usually doing this with you 
your way for a quick resolution.
