Wednesday, April 25, 2012


I’ve been fairly slack about blogging lately. Usually when I’m not updating regularly, it’s because I feel I have nothing interesting or useful to say. Lately it’s been the opposite. There are too many things to say, but formulating them into coherent, bite-sized posts has been too difficult, and so despite starting many drafts, not much has actually made it into public view.

I’ve had a fair few medical appointments lately. Some of them have gone well, some not so much, but I think maybe the easiest way to update is just in a summary of the things I’ve found out.

 1) My Vitamin D levels were super low.
From what I’ve read, the prognosis of SLE with low Vitamin D levels is not good, and so it’s important to check levels or failing that just start on a supplement. Reading this had worried me somewhat, as I was also aware that pretty much the entire population of New Zealand has low Vitamin D. So much so, that GPs are not even allowed to request the blood test anymore. My GP told me that she has actually taken to just starting people on a Vitamin D supplement without the blood test, as it’s unlikely that they’re NOT low. Specialists are allowed to order the blood test however, and so my rheumatologist had tested mine.
As SLE is photosensitive (reacts to sunlight – rashes and/or generalised flares) I avoid direct sunlight, and slip-slop-slap and wrap anytime I’m outside. Therefore I was expecting my results to be low. I just wasn’t quite expecting them to be quite so low.

Google tells me that Vitamin D levels can be explained like this*:
90-100 is the optimum range. You want your level to be here, for best health
50-90 is within the “normal” range, but in terms of vitamin D, you want to be optimum not just normal
32-50 is considered deficient
Levels should never be under 32
Levels under 20 are considered critically low

My level was 21, so you can see from the above that that wasn’t good. I had ten days of daily supplements, and now am on monthly, so I'm hoping my levels have improved.

2) My blood pressure is low
I’ve been having dizzy spells, and I wasn’t sure why. As a teenager, my blood pressure was always slightly low and then fairly often it would drop suddenly and I would get to know the floor a little better. I still don’t really have an explanation for why that used to happen. Eventually “my blood pressure just drops suddenly for no reason” became the reason. It stopped happening around the time I first started on DMARDs, so I have suspicions it was related to the autoimmune stuff all along, but I guess I’ll never know for sure.
I haven’t quite got to the regular fainting stage yet, but I have had a couple of crashing-into-walls, or grabbing-the-nearest-person’s-arm moments though. It may sound weird, but I was quite relieved to see the dizziness reflected in my blood pressure. Even though it doesn’t really change anything, being able to say “I’m dizzy because my blood pressure is low” rather than “I’m dizzy for no particular reason” feels slightly better.

3) The random swelling in my tongue andthroat is not an allergic reaction
When I described what had been happening, my nurse explained that it’s not an allergic reaction, but most likely from lack of saliva. My mouth is very dry, and this is probably causing the spitting blood in the sink issues too. My nurse has sjogrens syndrome herself, and said that the same thing has happened to her. Basically the tissue in your mouth and throat gets irritated from being so dry and then swells, leaving you feeling like you’re choking. It explains why antihistamines didn’t help, and that the swelling eased when I drank water and cooled down. I’ve been using dry mouth rinses and gums more often, and been careful to always have a bottle of water at hand. I’m still getting occasional swelling and bleeding in my mouth, but it does seem to be keeping it at bay.  

There’s heaps more to update on, but this is more than enough for one post. Hopefully I’ll get my act together soon and start doing that stringing-words-together-coherently thing soon :P

Thanks for reading
Little Miss Autoimmune

*Please don’t take this as medical advice. I have no idea whether this is accurate or not. As I said, it’s just what google told me.

Thursday, April 12, 2012

(Back to) Invisible Illness

I’ve talked before about the “but you don’t look sick” aspect of invisible illnesses, but I’m not sure I totally got it myself. When I feel awful, I tend to assume I look awful, even if that’s not what other people are telling me.

The other day my friend took this photo for me to use as my author pic, on my publishers website. When I saw it, I suddenly got what people meant. I don’t look sick. If I saw this person on the street, serious illness would not be the first thing that came to mind.

What you can’t see in this photo is that we had to delay taking it, because a week earlier my right eye had swollen completely shut. You can’t see that only a couple of days before, my face was covered in sores, some of which had turned into ulcers and my nose wouldn’t stop bleeding. You can’t see that this was one of the first times in months I’d been able to wear my hair out, because it had been falling out. You can’t see the crutch on the ground beside me or the gloves and coat I normally wear all the time to keep raynaud’s at bay. You can’t see that the bracelets around my wrist are actually not one, but two, medical alert bracelets, and you can’t see that I’m wearing fluffy bedsocks over my tights because my toes kept turning blue that morning.

I weighed up whether to post this. I like the way I look in this photo. I did not like my swollen-eyed scabby face look, so much so that the only person I let see me like that was my Dad. Of course I don’t want to look sick, but I do want people to understand that even though I don’t always look sick, I am.

World Autoimmune Arthritis Day’s video Invisible makes this point much better than I ever could. Check out the video here, or find World Autoimmune Arthritis Day on facebook here.


Little Miss Autoimmune