Some Good News

Today, I had my appointment with the Neurologist. I’ve been secretly (and not-so-secretly depending on how closely you know me) freaking out about this appointment.

A couple of days ago, one of my friends asked why I was so nervous, and I had to stop and think. In the end, I came up with three reasons.

1) I was worried the neurologist would be horrible to me. This may sound like an irrational fear, but the neurology department at Wellington Hospital do kind of have a rep for being rude and unhelpful. I had to see them when I was a teenager, and while they weren’t horrible I was pretty glad I didn’t have to see them regularly.

2) I was worried I’d have to go through a barrage of MRIs and other unpleasant tests, only for them to say: “Well, we’ve ruled everything out. Surprise, surprise, it was lupus all along.”

3) And this was the hardest one to say aloud: I was worried they might not rule everything else out. I was worried that I may actually have something like MS, on top of everything else.

Well, it turned out none of those things happened!

The Neurologist was really lovely. He was thorough and helpful, and even cracked a joke or two during the appointment. He didn’t get impatient with me when I was slow to... well everything I do is a bit slow really, and didn’t act like I was just being difficult when I was too short to climb up onto the bed easily (you’d be surprised how many doctors seem to expect me to spontaneously grow to make it simpler!) He helped me out when my leg started spazzing out and I lost my balance, and was very reassuring and encouraging about all the symptoms I’m having rather than suggesting they’re “all in my head.”

I did have to do some balance, and other neurological tests, but no bloods, CTs or MRIs (thank God – I’m super claustrophobic!)

The end result was that there’s no evidence of a progressive neurological disease, and while my nerve function is affected, there’s no sign that there’s any damage. The most likely cause for all the tremors, pins and needles etc. is that inflammation from all the autoimmune stuff is pressing on the nerves causing them to get a bit confused. There is the potential that one of my meds (for PCOS, not for lupus) could be adding to problems, so I need to check in with my GP about that, but that in itself is nothing major.

So, the best course of action is simply to continue to try and get all autoimmune issues back under control. No, it’s not a magic pill, but it does mean that I’m already on the right track and there’s hope that everything will settle down eventually.

While none of the things I was worried about actually happened, I don’t think that worry was wasted. While I agonised over all the negative possibilities, I was mentally preparing myself for them. I certainly wouldn’t have been happy, had any of them occurred, but I would have coped because they wouldn’t have been coming at me out of the blue.

As it was, none of them happened and it all went really well. So the niceness of that, more than made up for all the worry.

- Little Miss Autoimmune

My Amazing Friends

The other day, a couple of ladies came to my door to talk to me about the bible. I’m not really religious, but nor am I not religious, if that makes sense. I talked to them for a little while, all the while feeling excruciatingly embarrassed that I was answering my door in my nightclothes.

At some point during the conversation, I mentioned that I had lupus (probably to explain why I was walking with a crutch, and still in a nightie at midday.) They began talking about suffering, and I said that I didn’t believe you’re given more than you can handle. This was apparently a point of contention, as they immediately began to assure me that God didn’t hand out suffering, the Devil did. The Devil had given me lupus.

I really didn’t know what to say at this point. Part of me wanted to laugh at the image of a red, cloven hoofed Devil going around handing out lupus.

I understand what they were trying to say, but I really didn’t agree with it. I don’t like the idea, that sickness or any kind of suffering is a punishment, or that it is in any way evil. Sure, it can feel evil, but as far as I’m concerned it’s just something that is. Putting a judgement like that on it – thinking of it as a punishment, or as evil, just makes the experience even worse. Sickness etc. is bad enough by itself without adding to it.

I have some amazing people in my life. Many of them have illnesses of some sort – this is not why they’re in my life. Some of them are family members, or people I went to school with. Others I’ve worked with, either in the past or currently. Some I’ve met through support groups, online or in real life. All of them are amazing.

When I said to the ladies at my door, that I don’t believe you’re given more than you can handle, it’s because I look at the people in my life and the ones who have been through the most crap are with out a doubt the strongest of the people I know. I don’t know if they’re strong because they’ve had to be, or if they were always strong and it’s just more visible because they handle the things life throws at them with grace and humour. I suspect that they were always strong. And always amazing.

This is my friend Tessa’s blog. She’s been going through a tough time, with some serious illness this year. She is, without a doubt, one of my strong and amazing friends, but even my strong and amazing friends get down sometimes. So, if you’d like, maybe check out her blog and send some love and positive vibes her way. I’m sure she’d appreciate it.

- Little Miss Autoimmune.