Hi fellow lupies!
Since I am still a fairly new member, I am not sure if many of you remember me, but it has been a few months since I have posted, and I just thought I would check in and give a quick update.
Well, the past few months have been very busy for me(hence, little freetime.) But now I am on springbreak, so only two teachers are coming by next week, so I have about 5 days in a row where I can sleep and relax, finally!! I am still on the homebound schooling program(I have all of my teachers come by once a week(5 sometimes 6 days in a row), and they give me tests and a week's worth of assignments to complete. I've been on it since October(when my symptoms began to appear big time), and just a couple week ago, my rheumatologist told me that it's best I finish these last two months on homebound, and then go back senior year(I'm in high school) to get more stable and keep everything okay and under control. But it's been very busy, sometimes hard to keep caught up, but I am managing(only two more months!) With teachers coming over most days of the week, and then sometimes I have early morning doctor appontments, I get behind on sleep. I've had times where I wouldn't get enough sleep, then feel awful(mini-flare ups?) for a few days, then I would have to go up a one or two millligrams on prednisone to get out of it. But currently, I am down to three mg.
The plaquenil I started back in December is working GREAT!! Truly a miracle drug for me! My symptoms have decreased dramatically(joint pain much better, less times feel like I have the flu, etc.) I feel very thankful and blessed that something has worked. Sleep deprivation and stress are two things, though, that still give me problems, but I guess that's how it works, so I have to just be careful to avoid both. I still haven't received an official diagnosis of lupus, yet(not to my knowledge anyways), but my rheumatologist at each appointment keeps saying the word lupus and referring to anything new or any questions that I have with an explanation that involves lupus, and since the plaquenil has given me a complete 180 with my symptoms, I guess it's either RA, malaria, or lupus, and I don't have RA or malaria.
I did have a rash back in December all over my abdomen, and it appeared during a flare-up, and I went to a derm, and it turned out to be pityriasis rosea(common viral rash, once you have it once, you don't get it ever again), thank goodness! But for the past couple months, I have been getting these small-disc shaped lesions near or on my joints. They aren't in clusters or anything, just one isolated one appears each time. They are red and a bit raised at first, then the center gets very white and scaly, then it goes to pink, then, the part that worries me, it leaves a mark/darker spot behind on my skin that doesn't seem to clear up. My rheumatologist says he doesn't think it's lupus-related, but he said once another appears to go get a biopsy, but so far, another hasn't appeared yet, thankfully. Does that rash sound familiar to anyone? My rheumy wasn't sure, he said all of these rashes look so similar, and I've googled/researched it, and there are way too many conditions that come up.
One problem I have been dealing with now is menstrual problems.
Back in January, my GYN put me on Yaz to hopefully help with my bad pain every month(she thinks I have endometriosis), and it was working well, but the second month came by, and I was bleeding for about two weeks straight with bad menstrual cramps each day. My GYN took me off Yaz and told me to wait two weeks to start the new pills, and when I went off of those bc pills, I had a flare-up for about three days, I felt awful, and had to go up on prednisone, which took care of it. So, I was switched to Femcon Fe with a higher estrogen level, and it was going well, but since the beginning of this week, I have bleeding again and more bad cramps(and I am not on the inactive pills until next week.) I saw my GYN this morning, and she told me she really wants me to try to get through two more months to see if they help at all, and if not, then the next step is a laparascopy, and if endo is present, then she might put me on lupron. She said in the meantime though, to take pain pills when needed to get through this(vicodin, norco, or valium.) I am not a huge fan of taking these type of pain pills(I don't like the feeling they give you), but they do help with the pain. So it's been hard in that department, but I am keeping hope.
Well, that's what has been basically keeping me busy for the past few months. I just wish I had more time to be able to come online, and chat with everyone here, it's hard because my friends and family just don't seem to understand most of the time, but you all do, and it's great to know that there is a place I can come to where people can emphathize with you. I am going to try to come online more often. Well, I am going to go get caught up and read some threads, just wanted to give a quick update(sorry if I wrote I novel, I tend to do that, haha.)
I hope you all are okay and doing well and enjoying the beautiful weather and upcoming Easter!