Irritable Bowel Syndrome Message Boards | Re: UPDATE - Lupus diagnosis, treatment, and life in general

Well, I think I had another post announcing I was diagnosed with lupus back in March, but thought I should update here.

First of all, after reading up on lupus, I'm learning that a lot of the health problems I've experienced over the years are typical lupus symptoms. Also, those blood tests are pretty accurate and I'm responding well to Plaquenil. The IBS may or may not be due to lupus: the colon is made up of connective tissue which can be affected by lupus, but I also had a terrible GI infection immediately before the IBS started. Either way, I'm still following the IBS guidelines. I think if it wasn't for this diet, which is HEALTHY and IBS friendly, I'd probably be a lot sicker. So, thank you, Heather!

I've been on Plaquenil for over a month and this week the rheumy doubled my dose. No side effects! Yay! About a week or two ago, I started noticing that my skin was looking a lot better. Not as bumpy or inflamed. I've been more careful about sun exposure and have been using sunblock, so I think that's helping as well. I've also been noticing gradual improvement in other areas - my hands don't hurt as badly, I'm not as fatigued, a lot of my generalized pain and tenderness has been reduced. I never thought I'd see ANY improvement, so...WOW!

I ended up not applying for disability because I wanted to give this medication a chance. I did speak with my supervisor and she helped me adjust my schedule so that I could spread my hours out over four days, five hours each day. I'm still only working part-time, but I feel good that at least I'm still working! (However, this schedule also gives me time to continue writing and now that my brain fog has lifted I'm trying to take full advantage of this opportunity. So if I'm ot at work or on the boards, I'm typing away! It feels so good to be able to do what I truly love again.)

I think it's been almost two months since I had to call in sick to work. I still have some bad days, but now I see a light at the end of the tunnel. I went to a concert last week and spent the following day in bed because I was so exhausted, but that's still so much better than not doing anything and sleeping for 14+ hours/day for a week.

Some of you also know that I've been dealing with anxiety issues. I think a lot of this had to do with knowing there was something more to my problem than just IBS. The first couple of week after the diagnosis of lupus, I was feeling down and cried easily, but then I started feeling relief. At least I know what's wrong and I have my doctors' support in helping me get better. I'm seeing my PCP next month and I'm going to ask about getting off Buspar. I'll continue to take my 10 mg amitriptyline at night because I do think it's helping me sleep better and helping me manage the IBS and muscle/joint pain. One thing my doctor told me about drugs that are used in pain management, like benzodiazapenes (sedatives, anti-anxiety meds), is that they affect how you react to pain. I never considered the way in which I reacted to pain, but after she said that I realized that I do tend to go into panic mode when I start feeling pain. So now, I try to be more aware of what I'm thinking when the pain starts. Instead of assuming that it will become uncontrollable and I'll have to go to the ER again, I try to remember the last incident of pain, how I dealt with that, what worked, what didn't work, how bad did it really get. This actually seems to be helping!

In other life news, I sadly lost my aunt (through marriage) to colon cancer two weeks ago. Although I hadn't seen her in a few years because she lived in Spain, I have many fond memories of her and how well she took care of me when I visited Spain as teenager. Just this last week I learned that my step-father has cancer and yesterday he had a tumor removed. This has been a tough year for my family - we just lost my grandfather less than a year ago and I know that a lot of my family members thought they were losing me too because I was getting so sick. I'm very thankful that at least I'm getting better so that I can support my mom, since it was her father she lost and her good friend (my aunt), and now her husband is sick. I visited her yesterday and we had a good cry. My sister and I got her a gift card to Sephora for Mother's Day, which may seem a little superficial, but I think it will help her take her mind off some things to treat herself to some fun beauty products.

Anyway, I want to thank everyone for their support and well wishes and prayers. Thank you!

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