Can't someone else be in charge?

Yesterday I saw my gastro specialist. Despite the fact that I knew nothing would change at the appointment, I've been really anxious since I found out I had to go back and see him again. I couldn't entirely explain my feelings at first - this was the same specialist I wrote about in the pitfalls of hope, but this time around I wasn't hoping for anything. I knew that whether he gave me a diagnosis or not, nothing was going to change. My body simply doesn't work properly, and though there are bad days where I feel angry, frustrated and want to fight that, most of the time I'm getting better at accepting that it's just the way it is, and continuing to live my life, malfunctioning body or not.

When I've got my hopes up about appointments in the past, I don't think it's been so much about wanting a diagnosis or wanting things to change, but more about wanting someone to tell me what to do. To make the decisions about medication and other treatments. To tell me what I'm physically capable of without ending up stuck somewhere because my limbs stop working suddenly, or making myself sicker. To tell me which symptoms are serious and which I can ignore, and to know that someone else is looking out for anything life-threatening, so that that responsibility doesn't always fall on me.

I realised eventually, that the thing that was making me anxious about this appointment was having to confront the reality that the doctors don't know the answers either.

My GP told me that specialists don't like cases like mine. My illnesses and unexplained symptoms overlap so many different specialties, and so the instinct seems to be to try and pass me on to one of the others. They want clear cut answers and I am a blurry mess of symptoms and non-specifically abnormal test results (on a side note - does anyone else think "Non-Specifically Abnormal" would make a great T-shirt?)  I mean no disrespect to my medical professionals when I say that - they are all lovely people and very good at what they do. But they don't entirely know what to do with me. When you have a lot of health problems, you do end up mostly managing them on your own.

I don't feel qualified to be managing this many diseases - I mean if they were someone else's diseases no one in their right would let me be in charge. If the doctors can't figure it out, how on earth can I even begin to? At times I have no idea if I'm making things better or worse, and my medication list is so complicated that my pharmacists have made mistakes with it on a number of occasions. It does leave me questioning if I can possibly get it right when even the professionals can't always.

In a weird way, acknowledging my feelings about all this, made the appointment a lot less upsetting than previous ones have been. I went in there accepting that I wasn't going to get answers, but also accepting that it's totally understandable for me to still want them. 

So, what did happen at the appointment? Well... I'd like to introduce my new diagnosis Little Miss Pernicious Anemia.

Like her friends she is an autoimmune disorder, and in her spare time likes to attack the intrinsic factor (the thing that lets you absorb vitamin B12) in my stomach. Despite the synonym for deadly in her name, she is not life threatening so long as I keep up my B12 levels with supplementation.

This wasn't a surprise. I've had severely low B12 levels this year, and given my history of autoimmune disorders and the fact that the antibodies test was positive, I knew Pernicious Anemia was the likely cause. It doesn't really change anything, other than I will need to be on B12 injections for the rest of my life, rather than just as a temporary measure, and I may end up with further stomach issues later on. The specialist has suggested we also test for bacterial overgrowth syndrome, so in a couple of weeks I'll be spending the day at the hospital taking a breath test every half hour. Bacterial overgrowth is treatable in the United States, but apparently we don't use the same medications here in New Zealand, so if I have it, it might explain a few things, but again, the diagnosis wouldn't change much.

One really good thing that happened at the appointment though, was that the specialist told me that he thinks my attitude towards my health is very realistic, and that I seem to be using a lot of common sense in the way I manage it. He also acknowledged modern medicine hasn't quite figured out people like me yet. There are lots of interesting things happening research-wise, but in the meantime, we have to just do the best we can to keep well, while the medical world catches up with us.

It was strangely comforting to hear the things I had been thinking about, leading up to the appointment, put into words by the specialist as well. This isn't quite as good as someone giving me answers about what to do, but it as at least reassurance that I'm not quite as incapable of managing things as I sometimes feel. I still don't want to be in charge of this mess, but if I am, I guess it's good to know that at least one person thinks my instincts are worth trusting. 

Thanks for reading,
Little Miss Autoimmune

I have a doctor’s appointment tomorrow… and I’m scared.

I really would have liked this post to have a more succinct title, but this is pretty much what it comes down to. I’m seeing a sleep specialist tomorrow, and I am scared of ALL THE POSSIBLE OUTCOMES. :P

I’m scared he will have no idea why my sleep is so weird. I’m scared he will know and it’s something bad. I’m scared there won’t be any treatment options for me, but I’m also scared of treatment options because I’ve had such awful, sometimes life-threatening, experiences with medications and side effects over the years. I’m scared that trying any treatment could make my sleep even worse – it is entirely possible that it could – but I also know that if I don’t try, things could get worse anyway. I’m scared of the sleep disorder going away completely (as I’ve discussed before there are positives to it) but this winter things just got so so bad and I simply can’t go on like that. I’m scared because I’ve done a lot of work on myself in the last couple of months and have managed to get to a really good place, and I’m worried changing things could tip me back to somewhere bad. Mostly I’m scared because despite my best efforts to not get my hopes up about what this appointment will mean... I’ve totally got my hopes up, and I’m scared that I’m going to be crushed if this doesn’t work out well.

I know I’m not the only person who feels like this before appointments. When you have chronic illnesses, this thought loop is kind of just part of the process. For a long time I didn’t realise that, and thought I was the only one having such contradictory, sometimes irrational, thoughts. While I’d never wish illness on anyone, this is where it’s been really great to read other blogs, and have friends who are going through the same kinds of things, because you figure out that all the weird things you end up feeling are just normal reactions to an abnormal situation.

I could sit here and tell myself to be positive and say it’s all going to work out fine, but… well that’s not all that realistic. I’ve got no idea what the outcome of this will be, or even whether it’s going to be positive, negative or that good old beige in-between. I do know that I will figure out a way to be okay with it whatever happens. Because I always do.

Fortunately I have some pretty awesome friends, who’ve been supporting me through all of this, and one has even made an amazing offer to stay with me if I do try medications. Having someone there would really help me out with the fear of things going wrong, and would hopefully help to mitigate the effects if I do have a negative reaction. In the meantime I’m just going to have to deal with this appointment-anxiety. If nothing else, I do find it funny that worrying about a sleep-appointment is making me not sleep well. But maybe that’s just my twisted sense of humour.

Thanks for reading, 
Little Miss Autoimmune.