I want to ask some of you about something that I wonder if I am alone in. But first, I want to share some positive things.
I'm very proud of myself for being involved in life in the last three months or so. In October and November, I went to a Renaissance Fair, a super big car show, and an air show. These are big because they took being outside in the sun (I took precautions, to be sure!) and a good deal of physical exertion, more than I'm generally used to these days (I made sure to rest and sit down when I needed it).
But even bigger for me was one of those 'first's that we don't look forward to. During Thanksgiving, while spending it with family, the whole group wanted to go see a christmas light display that the local zoo had created. It was not a small zoo, and the terrain was hilly. Add on top of that my difficulty of having one of my SI joints screaming bloody murder (incoming storms). I didn't want to ruin the fun, and it seemed that it was either do that (by not going, and thus hubby not going, or by going and hobbling along and having to call the jaunt short), OR tackling something I've been avoiding for a while now. So I bit back my pride and anxiety and rented a motorized chair. I haven't wanted to, for all sorts of reasons, and have been putting off my first attempt until I absolutely had to. Well, that "absolutely had to" had come. I was aghast at the price they charged, but hubby was adamant. While it was a little frustrating trying to navigate crowded pathways in the dark with this big thing, I had to and have to admit that it DID allow me to enjoy the lights and the company of family that otherwise would have been completely impossible.
Still, part of me resents needing to have done that. Which leads me to my questions for all of you.
There are parts of my Lupus that are technically inconsequential, but that bother me because they are reminders that something is very wrong with me. These little things worry me, or exasperate me, or just give me a nagging feeling of things being wrong. I hate this feeling, but can't seem to shake it.
Some of those little things are:
My malar rash. My rheumy doesn't seem all that concerned with my rash, which is admittedly pretty light. But every time I get it, I fret. It makes me feel like things are going badly. It doesn't help that usually I physically feel bad all over when my malar rashes come on, but even so, to me, having my butterfly rash bothers me.
Mouth sores. This is a relatively new thing for me. I didn't used to have them, but over the last couple months I've started noticing little bumps in the deep parts of my cheeks where my jaw hinges. Rheumy confirmed that they were the ones Lupus patients get. He's asked me about them before, but I've never been able to SEE them to tell if any sores I have are white. He could see them last week. Today, I got a new one on the center of my inner cheek. It's larger than the others have been, like I've bitten my cheek hard and left a welt. It doesn't hurt, and hubby peeked in and confirmed that it is indeed white. So now I'm fretting at it, weirded out that it doesn't hurt, and bothered by having MORE rather than less of these things.
Feverish eyes. This generally goes with my butterfly rash. Rheumy seems to think it's allergies. If so, I have never experienced allergies like this. My eyes get watery and feel warm, like when you have a bad fever. Sometimes the wateriness is just slight, probably enough to make my eyes shiny. Other times I leak occasional tears. Sometimes it's bad enough that it's almost like I'm crying. The thing is, they don't itch or feel gritty or anything like what I associate allergies are. Sometimes I think I might have a fever when this happens, but generally I don't. I dislike not having an explanation for it, and worry that something is going on when they get this way.
I know that none of this is earth-shattering or life-threatening, but they still upset me. I don't feel healthy at all when experiencing these things, which is enough all by itself to upset me. Do any of you have similar struggles? Do you have small, not-so-important things about your health that bother you and remind you unpleasantly that your health is not what it should be? Please share with me, so I don't feel so alone in being bothered by these little things.
Also, please know that I understand many folks have it worse than I do. I am deeply grateful that I have not had any organ involvement thus far, that I haven't been diagnosed with other conditions, etc. I do not mean to minimize or belittle the fight others face. I just am looking for a little companionship in my own personal struggles.