After running my labs for surgery I was severely anemic and not the kind where I am low in iron but the kind where you are low in blood. My surgeon ended up postponing my surgery the night before I was suppose to have it. I was devastated, I wanted it over with so I could get back on meds and have some relief. At least just pain killers but those are blood thinners so those were out of the question as well. I would have to suffer longer in physical pain head to toe. I could barely turn my head at this time, it was excruciating and unbearable pain. At this time I couldn't do much of anything not even get dressed on my own.
I tried MANY holistic things during this time which helped but not enough. I will share with you in later post which things I found to be the most helpful.
Sometime around October/November my primary care physician decided to test me for lupus as well.
In December the nurse called and told me the test had come back positive. I didn't care, my attitude was like: oh well, just one more thing, all the news I was getting during this time seemed bad. When my Rheumatologist heard about it she said: "well it maybe that your RA is so out of control that's why it showed up positive but it is unusual to have both RA and lupus so I would like to run a full lupus panel just to make sure." So at that point I had hopes that perhaps I actually did not have lupus.
Mid January I had surgery. It went well and surgery was like nothing. I was so happy to have it done with. And the great news was I did not have lymphoma. But during those months were I was disabled ( with a handicap plaque) there were many other symptoms that I had.
I would get REALLY nauseous in the mornings. I would get dizzy and light headed and throw up. I had itchy legs. My attitude and my mental state was clear and happy, but I was physically limited beyond what I could have ever imagined for my life.
In February I began plaquenil again hoping that after being off of it for about a year possibly it could now work again. I was also prescribed prednisone.
In March we wanted to go see where Carl's brother had just moved to in Colorado and I knew the only way I would be capable of traveling/ having my body move would be steroids. So I had prednisone injection. OMG!!! this threw me for a loop. Because my body had been clean for all those months, all the side effects came on immediately and FULL FLEDGED: I had terrible acne, I was irritable, had mouth sores, depressed, anxious, I couldn't sleep well-I had insomnia, I had rashes in miserable places-like my eyelids, I had a crazy appetite but was afraid of food harming me, so this made for more anxiety during meal times. And yes I could move but not like others can move, I could do just enough to get around but with a limp and a huge amount of pain still and exhaustion from pushing my body. If you can try to imagine just breaking your foot,hand, shoulders, hips, elbows and knees all at once and still getting out of bed each day and going about business. You do it a little slower then everyone else because of the pain but you still push and do it. Wouldn't you be pretty darn tired at the end of the day? That's what my everyday was like. While I was in Colorado my rheumatologist's nurse called me and said they had the results of the lupus panel and I do indeed have lupus. This time my reaction was a little different. I cried. I cried and cried because I taught she was going to be right. SO yes I not only have rheumatoid arthritis and hoshimoto's; but I have lupus as well. 3 different AUTO IMMUNE DISEASES. Each with its own little taste of hell.
From March - June I continued the plaquenil and took 10 mg of prednisone a day. I hate the acne and side effects but as they say, its a trade off right?!
It's now July and I can drive myself to an appointment or tea date but I do have to start my car with my foot. I do not have enough strength in my hands. I am still suffering the horrible rashes and pain but it is mild compared to before. It's not mild to the average person, but it is to me or to anyone who suffers with severe RA. My days usually began a lot later then most people because mornings are still too hard.
Many things that were normal for life in the past are not anymore. Like doing grocery shopping unassisted, going to the mall and being able to walk around. Here's a pic of a mall trip with my sis in law- she had to push me around all day.
