Hi everyone. I'm new to the community so I thought I would write a post to introduce myself and share a little bit about my story.
My name is Liz, I'm 29, I live in Vermont, and was diagnosed with Lupus in June of 2012. I was diagnosed with sjogren's syndrome as well as hashimoto's thyroiditis right around the same time. It was like a double - no triple whammy to my system. It was at the same time I was making the decision to end a ten year abusive marriage. It was extremely emotional, and stressful. I had been on disability for 5 years due to stress caused seizures and was in the hospital due to them during this time when all of a sudden my joints started to swell up, become extremely painful, and I could barely walk. My doctors started looking at my past and previous symptoms of sensitivity to the sun, hair loss, exhaustion, and decided to run tests. It was determined that I had lupus. I was so upset. I couldn't believe it.
I left my ex-husband. I was started on plaquenil and prednisone, and after about three months the flare up was finally over. My base line is always about a 3 on the pain scale...I'm always in some level of discomfort. My joints are always a little achy, as well as my muscles. I get tired very easily. My seizures have fully stopped - leaving my ex had a huge part to play in that. That was a hugely positive thing in my life. To no longer have to deal with the seizures is wonderful. But I'm extremely frustrated because it feels like the seizures were replaced with lupus.
I had a second flare up in July. I was put on prednisone, but started to react emotionally to it. Became very depressed, and couldn't sleep, so my doctor switched me over to Medrol which I seemed to do well on. Starting at the beginning of September my doctor had me taper off of the Medrol. Well, around September 14th, I started to feel the symptoms of a flare up coming on again. I called my doctor, he asked me to start the Medrol up again. On September 17th I was sick. I was feeling faint, weak, and ended up passing out. My fiancé (I met a wonderful, caring man in April who I know I was put on this earth to be with, and we are engaged to be married next June), took me to the emergency room. They ran blood work, and said my potassium and calcium were low. The ER doc said that my rheumy took me off the Medrol too fast and that my adrenal glands didn't have time to wake up and start producing their own electrolytes so that's why I got sick. Well, my rheumy didn't agree and said that I had a virus.
Anyway, since then this latest flare up has gotten worse, and I went from 8mg of Medrol to 24mg of Medrol. I am having to take Tramadol for pain because ibuprophen, Tylenol, advil - none of them work. The Medrol is starting to effect my mood. I feel so depressed because I feel like my poor fiancé is having to take care of me and I hate that. I am a strong independent woman, and I hate feeling so sick!
I hate having to sleep during the day, or rest. I had to withdraw from school this semester because I had missed to many classes, and I just feel like this lupus is taking over my life. My fiancé is always telling me that this flare up will pass and I will get better and be back to normal soon, but it's so hard to believe him. I can't sleep well, have no appetite, can't go to the gym. I'm in pain so much of the time. I'm just so incredibly frustrates at this point. I'm keeping up with the house work, and things like that, but finding it harder and harder to remain positive.
Anyway, I'm sorry that I seem to be complaining so much. It's just how I'm feeling and have been told to be honest. I hope that I'm able to find and give support here.
Love to all,