Living in Bucket List Mode

Don't be alarmed by the title - I'm not dying, or at least not any faster than the usual!

Some stuff has been happening with my health, and I haven't posted about it for a couple of reasons. One because it's still all in the stage of "this will probably all turn out to be nothing" with only a slight possibility of it turning out to be "something", and two because as is just about always the way in life, ALL OF THE THINGS both good and bad happen at the same time, and finding the time and spoons to sit down and write a blog post becomes of low priority.

In the past when things have gotten bad with my health, I've tended to feel quite closed off towards new things or people. I never want to take on something new, or start a new friendship, if there's a chance that I will end up having to abandon it and letting people down. But as I say, when my health is at it's worst, that's when the good things tend to happen as well. New ideas, opportunities, or people appear in your life, right at a time when you're not sure if you're well enough to fully commit to, or appreciate, them.

In the past few months, I've had some really cool work and writing opportunities present themselves in my life, and this time around I've felt a lot more open about exploring them. This is in part because I've been thinking a lot about bucket lists lately. Not just for things I want to do before I die, but for things I want to do before I lose the ability to do them. I've come to accept the fact that my diseases may well progress. This may mean that I lose functions, or find things a lot harder to do than I do now. I'm already seeing this. As my joint symptoms have become active again, I'm finding it more and more difficult to do tasks that were easy a few months ago. But they're not impossible yet, so I'm keen to keep experiencing all life has to offer while it stays that way. I'm living in Bucket List Mode.

I'm also more open to exploring opportunities now, because I know myself well enough to be confident that I will do everything possible to avoid letting other people down. My doctor told me the other day that she thinks I've always been very honorable in the way I handle my diseases in relation to other people. I hadn't really thought of it like that before, but she's right: when I take something on, I do what I can to see it through, even if I do become really unwell during the process. And if it gets to the point where it's absolutely not possible for me to continue, I do my best to lessen the impact of that on other people. So even if this does turn out to be "something" I can still feel reasonably confident that I won't end up letting anyone down by taking these new things on.

So here's the deal with my health at the moment. A few weeks ago, I had an odd episode where out of nowhere I experienced a sudden-onset, blinding headache, and started vomiting - hugely bad timing, as I was away for a hens weekend at the time. As a non-drinker, I didn't think I would ever find myself vomiting uncontrollably while dressed in a Big Fat Gypsy Wedding costume and tiara, but there I was. I guess in a weird way that's a life-experience to cross off the list! I assumed at the time that it was down to my wonky-donky blood pressure, or perhaps just the heat. But over the next week I began to experience some other weird and slightly alarming symptoms. I struggled to hold a conversation, as I couldn't find words or forgot what I was saying. I was having trouble reading and writing, and couldn't work my computer. Most confusing, I managed to get on completely the wrong bus, despite always catching the same one. I wasn't all that worried until people kept starting sentences with: "Now don't worry, but..." (there's nothing that tells you there's something to worry about, more than people telling you not to worry!) so I made a doctor's appointment.

By the time I got in to see my GP, things had improved, and I was more or less back to normal. It's quite likely that we won't ever know what caused this episode. My GP said it could be down to my blood pressure, as I'd thought, though it was normal at the appointment, or perhaps an atypical migraine, though the headache was bi-lateral. The slightly more concerning possibility she raised was of it being Cerebral Lupus (inflammation in the brain, caused by SLE.) She said she has another SLE patient the same around the same age as me, who's experiencing very similar symptoms, though her's have been reoccurring episodes whereas this was a first for me. She also gave me the "now don't worry, but..." speech, so I know that this possibility is not exactly ideal. The plan of action is for me to have an MRI at some point, to see if we can figure out what's happening. Unfortunately my insurance will cover an MRI but only if I'm referred by a specialist not my GP (yep, we have insurance issues in NZ too!) and the public system will take a really long time.

So for now I don't really know. I'm honestly not really that worried, in fact I'm more concerned about the idea of actually having the MRI than of any possible negative results. I don't really think it's going to show anything. I strongly suspect these symptoms will remain a mystery, but even if it does turn out to be something I'll cope with it. In the meantime, I'm cramming in all the good bucket-listy things, because either way, there's a lot of them to fit in.

Thanks for reading,
Little Miss Autoimmune

The Vampire's Cousin

Stitches ready to come out post-biopsy

For me one of the most inconvenient symptoms of SLE is being photosensitive. If I’m in direct sunlight for too long, I come out in large wheals and often flare very badly afterwards. Added to that, the medications used to treat SLE actually increase this sun-sensitivity, and also increase the risk of developing skin cancer. Not so great when we already have such a high rate of melanoma in New Zealand from the hole in the ozone! There’s only really one way to deal with it – avoid being in the sun as much as possible, and slip, slop, slap and wrap when you can’t avoid it. 

You may remember last year I had a biopsy done on a rash on my neck. At the time, my dermatologist thought it may be one of the autoimmune forms of folliculitis, but in December I got the biopsy results back from my GP, and it didn’t show folliculitis but instead showed that the sun sensitivity was likely getting worse. It also probably wasn’t helping that I’d been getting a bit lax about covering up.  

It was really weird timing, as I’d just finished reading What We Saw in the Dark – a novel about three teenagers living with Xeroderma pigmentosum (a rare genetic disorder, in which the ability to repair damage from UV light is deficient) who spend their entire lives living at night, trapped inside during daylight hours. I’d also just met another lupus patient, whose skin, head to toe, had suffered permanent visible damage from sunlight. So all in all, I didn’t feel too sorry myself, as the universe seemed to be spelling it out to me that it really could be so much worse. It was also a bit of a reminder that I do need to take this more seriously, as I want to try and avoid the kind of skin damage this other woman had experienced. 

I’ve been being a lot more careful about not leaving my skin exposed when I’m outside since, which has led to a few “interesting” outfits recently. I did, however, get the best compliment the other day when I attended a friend’s outdoor wedding and she exclaimed “Wow, you’ve actually managed to look normal!” so I think I’m starting to get the hang of it now.

I’ve noticed, that if the subject comes up – which it does when people wonder why I’m piling on on long sleeves, scarfs and hats in summer – I seem to be answering the same questions over and over. I don’t really mind that, but at the same time, I thought it might be easier to set up a sort of FQA on the subject.

What happens if you go in sunlight?
I get Uticaria, which is basically a fancy word for hives. These come up as big painful, itchy wheals and blisters. They then turn into an eczema-type rash, which often then gets infected or ulcerates. Nasty generalised SLE flares usually follow. I also get sunburnt a lot quicker than normal, and have a high risk of skin cancer

So… if you go in sunlight, will you like die?
No, I’m not actually a vampire. More like a vampire’s distant relative.

Aren’t there things in sunlight that humans need?
Yes, the main one being Vitamin D. Having low Vitamin D levels can have an effect on mood, energy levels, and can cause a whole host of health problems. There are some food sources of vitamin D, such as mushrooms and fortified dairy products, but from what I understand if you’re not getting enough from sunlight for whatever reason, it’s best to get it from a supplement. I take vitamin D tablets twice a month, and feel a lot better for it.

Don’t you get hot, being covered up all the time in summer?
Yes, but the reality is it’s a choice between covering up and dealing with the heat, or not going outside at all. I try to arrange things so I can stay inside during the middle of the day, but sometimes I can’t, and covering up with clothing and 50+ SPF is the only way around it. Sometimes this means that I won’t come to events that are held outside, or I may be a bit antisocial at barbeques etc. and sit inside by myself.     

Doesn’t that thick sunscreen mess with your skin?
Let’s just say I’m not going to be doing any cover girl ads anytime soon. This is one of the big reasons I wear a lot of clothing, because it cuts down on the amount of sunscreen I have to use, though in some situations I do have to use sunscreen under my clothing as well.

But don’t you ever just want to sit in the sun?
Personally, sunbathing was never something I particularly enjoyed before I got sick, so this isn’t really something I feel I’m missing out on. I get why this would be a big deal for some people though. Unfortunately, the reality is that when you’re living with chronic illness, there are sometimes going to be things that you want to do, but can’t and you just have to find a way to be okay with that.

Thanks for Reading,
Little Miss Autoimmune