This Means War…

Last fall my body felt different. I knew what flares felt like. This felt worse than a flare. I stayed optimistic thinking it would go away, however, it stuck around until late December when it became worse than when it started.

This flare had the worst timing ever. My PCP left her practice in October. She was my everything. I did not see any other doctor. She managed my thyroid, Sjogren’s, insomnia– whatever the issue, she solved it, and did a great job taking care of me.

When she left, to go to New Zeland with her family, I couldn’t fault her. Maybe she followed a dream. Or wanted a better, less stressful life. Whatever the reason I wished her luck. Although somehow I knew, I would have trouble replacing her as my doctor.  She was the best!

I managed to find a wonderful CRNP toward the end of October. Around this time, my lower back and sides were screaming in pain. In the morning, it was not an easy task getting out of bed. So, I went hoping she could help me figure it out.

I liked her laid-back style. Of course, she had a gameplan. If it wasn’t “this issue,” then it was maybe “this instead” and we would do this course of treatment first. She sent me for a round of testing, and it became known I had kidney stones.

Kidney stones. No big deal. You pass those. Mine wasn’t supposed to be the big ones you need the hospital’s assistance with. But the more time passed, the more pain I had.

In December, I started having some bad days. Like the kind where it is hard to get around and it’s hard to get out of bed and walk. A couple of mornings, my husband had to lift me out of bed.

I hated asking for his help. I like doing things my own way and being independent. I don’t like him seeing me in that shape. At that moment, I don’t know how I would have managed without him. I felt so stiff and so awful. The amount of pain was horrible.

I went back to my CRNP to ask for help. She felt bad for me. She took some labs thinking my Sjogren’s was active, again, as I was told it was in remission. She checked some other things, too.

When the bloodwork came back, my white blood cells were low. I’m learning a low white count seems to be my normal. My thyroid was a little off and my kidney and liver were mad at me. I had been taking a hormone and cherry supplement which I needed to stop taking right away. After I did, my labs were better.

After the labs, she ordered a CT scan, which had to wait until January. She told me the things it might be, however, the scan was clear. No kidney stones. Again, she felt bad because she didn’t know what to do or how to help me. Then, I felt bad because she is nice and genuinely wanted to help. I liked the way she did things, and it wasn’t her fault she couldn’t fix it. I did tell her it wasn’t her fault. She tried.

After a week or two, I changed providers, which I felt awful about. I started seeing a Doctor of Osteopathic Medicine for my PCP. My husband told me I needed a second opinion. My new PCP is nice, his views are different, and can sometimes be refreshing. (Other times it’s a pain, I don’t like running in the office for just a sinus infection.)

When I went in for my back/sides, he told me it was probably my bed. He suggested sleeping with a pillow between my legs because it helped him when his bed was killing his back. I mentioned my autoimmune crap and this flare which has put me on a bad path this winter. I’ve gained some weight which can add to already feeling crappy about the flare. Then, he wanted to talk about diet, and he checked my thyroid. I don’t feel like this visit solved much. At least my thyroid was okay, I suppose.

I did go home and try a body pillow. I felt like maybe it helped a little, but if anything I like it more to snuggle with. I don’t think it solves much of the back/side problem.

I finally relented and found a rheumatologist. In the past, I didn’t have much luck with them. I decided it would be better to stay away since they didn’t help me anyway. In my area, it is hard to find a good one. I called at the end of February. As luck would have it, they had an opening two days later and boom it was done.

Going to the rheumatologist wasn’t bad, I only got lost once compared to the other times. The other times I’ve got lost loads more (I hate the city). One thing I didn’t like about my appointment was seeing the resident before seeing the actual doctor. She took quite a chunk of time. It was uncomfortable. She went out of the room so I could get undressed for the exam, but when I was getting my clothes back on she stayed in the room. I stared at her like, Um? You went out when I undressed, but you are still here, why?

She refused to talk about certain things. She went over things several times. She didn’t even look at the paperwork. Why fill it out? Frustrating.

Then, after waiting, I did meet the doctor and she made up for all of that. I guess even the embarrassment was worth it. We talked about symptoms and Sjogren’s and how I have been feeling since October.

She didn’t want to take the Sjogren’s diagnosis away then even though I do not present with classic symptoms because she wasn’t sure what my labs would show. I only have SS-B  RO antibodies, and it’s all I’ve ever shown. When I was diagnosed with Sjogren’s, I presented with fatigue and joint pain only.

My doctor ordered more labs and a couple of x-rays of my back and hips. I had them done nearby at my PCP’s office so I could see the results immediately. I knew I could research the results before they’d ever get back to me.

I never expected to see my body change the way it did. I know I felt it, but that wasn’t a very nice thing for it to do. Here I was kicking Sjogren’s butt and winning, and it goes and changes the whole ballgame. I don’t have Sjogren’s at all.

Now I have a positive Smith antibody and positive RNP antibody in addition to the SSB- Ro and suddenly this puzzle is making sense. I have Lupus. It is possible I have had it for a long time. The last time I had my Smith and RNP antibodies checked was 2012. Or maybe it picked now to start bugging me. Thanks a lot, Lupus. Anyway, I’m clueless.

My doctor said it is possible I may never have Sjogren’s again. Though, it is also possible I could in 10 years because Sjogren’s is one of those diseases that commonly overlap Lupus. She did not take away the Fibromyalgia diagnosis so I suppose I still have it. I know. How wonderful…

As for my X-rays, my hips show mild degenerative changes. My back shows minor spurring associated with degenerative changes. She didn’t address the pain. She did add Plaquenil. I’ve been on it for three weeks this Saturday.  I could not take it 8 years ago. I couldn’t handle it. I hope I get better results this time.

This flare, it is the mother of all flares. I have no idea how long flares last with Lupus. I’m new with Lupus flares. I am, however, adopting the same attitude. I will not, ever, let it beat me.

This means war!

If you have Lupus, I’d like to hear from you! What has your experience with flares been like? Are you taking Plaquenil?