Answers

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.

Just another day.

Sometimes it worries me how quickly things become commonplace when you’re sick.

Last night, I was spitting blood into the sink again. A few years ago, I would have been terrified to find my mouth was bleeding profusely for no apparent reason. Now it’s just an annoyance.

As I rinsed the blood away, I started retching, then threw up in the sink. Again, I feel this should have bothered me more than it did. Admittedly, I did have a small moment of panic because the vomit was bright red (I know, great mental pictures in this post!) but once I remembered I’d been eating berries earlier I just cleaned the sink and went to bed.

I’m the girl who didn’t throw up once between the ages of 14 and 25, even when I had food poisoning in that time. Now I sleep with a bucket beside the bed every night, just in case.

Lately I seem to have developed yet another fun new symptom. On Thursday, I woke in the night to find the side of my face was swelling up. My lips and tongue soon followed suit and it was getting a little hard to swallow. When the antihistamines I use for my latex allergy didn’t do anything, I phoned my dad and got him to take me to A&E. After a couple of hours and some more antihistamines, the swelling had gone down enough for me to go home, but I was no wiser as to the cause.

Night before last, the same thing happened again – face, lips and tongue swelling. I didn’t go into A&E this time, but just took the antihistamines and kept in text contact with my dad until the swelling went down. Last night I was sitting in a meeting at work, when I noticed the inside of my lip was covered in lumpy blistery things. A few minutes later, my tongue had swollen up again. I got up and left the meeting, and one of my colleagues followed me out. I tried to tell her I was fine, but what came out was “thigh sthmine” (she laughed a lot!) Less than two minutes later though, the swelling had gone down enough for me to talk clearly, though I was still adding a few ‘s’s to words.

I don’t know what’s causing this. Initially, I thought it was an allergic reaction, but the last one swoll up and then went down again so quickly I don’t know if that’s possible. The only common factor seems to be heat – first one I was running a slight fever, second I’d just had a hot bath, third, the office was really hot – and it does seem to get better when I move somewhere cooler or drink water, so maybe it’s that. I don’t know.

Though I do spend a lot of time analysing these situations afterwards, they worry me less and less. My colleague was confused as to why I’d left the meeting. As she said “when there’s a chance you might choke on your own tongue, you stay with people!” I was really more concerned that I might accidentally spit my water out, if I tried to drink and didn’t want to do that in front of people. So I left.

I wasn’t really worried about choking, or my throat closing up. After the first time, I didn’t feel the need to go back to A&E either. As I said – commonplace. I think if I panicked about everything, I’d be an emotional wreck – as would my doctor, as I’d probably never leave her office.

Though I don’t really want to be “used to” any of this stuff, it’s not really disrupting me as much anymore. In a way, it’s comforting to know I can spend my morning throwing up, swollen up, or stuck on the floor because my foot’s gone numb, then just go on with my day as if nothing’s happened. Of course, it would be more comforting if I wasn’t throwing up, swelling up, or getting stuck on the floor at all... but if I have to do those things, I’m glad to know I can do them without panicking.

- Little Miss Autoimmune