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

Test Results

My theory that “no news means good news” when it comes to test results proved to be slightly flawed in that it doesn’t take into account when it’s actually “no news means your doctor just hasn’t had time to check the results yet.” At any rate, my GP rang me on Wednesday to tell the blood tests I had done a while ago had shown my B12 is quite low. I think you’re supposed to feel upset when you’re told there’s something new wrong with you, but honestly I just felt happy that it wasn’t anything more serious and that for once it's something easily solvable.

It always cracks me up that on the occasions I’ve gotten a phone call about tests results, I’ve always been doing something inappropriate considering what they’re telling me. When they rang to tell me I had coeliac disease, I was eating a box of whole-wheat crackers. When it was about my kidney function going south, my mum and I were making vodka cocktails (it was Christmas Eve, don’t judge!) And this time I’d just put some chicken back in the fridge in favour of making something vegan for dinner.

I know probably I don’t eat enough meat considering I already have iron-deficient anaemia, but the B12 is more likely low because of my stomach’s fun habit of deciding it doesn’t want to absorb food anymore. After a long time of my weight staying stable, some of the gut issues have reappeared and that has resulted in a couple of kilos disappearing again. I’ve been able to keep my iron levels normal with tablets, but given the weight loss at the moment, my GP decided to go straight to a B12 injection to give the best chance of it being absorbed.

I wrote this when I was five. I assume I’d just had my vaccinations (not entirely sure what the nutty friend part is about) but it did make me laugh how almost prophetic this statement is. As a five year old doing my best to avoid having any shots done, I don’t think I ever would have imagined someday I’d be injecting myself with medication every week, having regular blood tests, and occasional extra IM shots like this one, but there you go. I’m pretty blasé about needles these days, so agreed to let a student nurse do her first injection on me. She actually did an amazing job, and I barely even felt it. Fun times!  

A quick google search told me that a lot of issues I’ve been having lately, including the irregular heart rate, could be down to the B12, though there seem to be varying accounts of how long it takes for symptoms to appear. Most say there are various symptoms (the ones I’ve been experiencing) that can appear in the first few years, then a whole lot of much more serious ones that appear the longer you are deficient, so thankfully this should stop it progressing to that. I’ve also heard completely opposing stories from people as to whether they felt amazing straight away after the injection, whether it took them a couple of weeks to notice a difference, or whether they felt nothing at all.

So far I haven’t noticed any major change, but it’s only been a couple of days so I’m keeping my fingers crossed I’m in the better-after-a-little-while camp.

Thanks for reading,

Little Miss Autoimmune