And we’re back to lupus... I think

I had an appointment with my rheumatologist on Thursday. I wasn’t really expecting much to come out of it. I don’t mean that as a criticism of her, just that I was under the impression that I had no treatment options left. I wasn’t expecting that she would be able to do anything for me and I really didn’t think the confusion over the diagnosis was going to change.

Surprisingly, I was okay with this. I blogged a few weeks about the pitfalls of hope when it comes to believing illnesses will get better, and I think the opposite can be true. If your expectations are low, and you find a way to be okay with that, then anything above those expectations happening is a bonus. There were a couple of questions I wanted to get answers to, and I was really hoping that a cortisone injection in one of my fingers was a possibility, but other than that I was okay with nothing really coming out of the appointment.

It turns out the joint in my hand is too small for a cortisone shot. I realised afterwards that I wasn’t sure if my rheumy meant this is always the case with finger joints, or it’s just because my hands are unusually small for an adult (they’re the same size as my nine-year students’) but either way it wasn’t going to happen. Instead my nurse gave me an intra-muscular steroid shot. I’d mistakenly thought this wasn’t an option at the moment, as I’d got the time frame wrong as to how often you can have them, so it was a bonus to be able to have something that would quickly get some of my out-of-control symptoms back down to a more manageable level.

I was pleasantly surprised to find I do actually have a couple of other medication option still to try. My rheumy was at great pains to point out that a couple is not many, and as always there are risks with any medication, but given that I thought I had zero options left a couple is good news. I know very well that these may not work and, since I have to wait for some blood tests to come back before I get the go ahead to start, it may turn out not to be possible for me to even try. I’m not allowing myself to get too invested in the idea that these will help but, at the same time, they have more chance than nothing.

Then there was the diagnosis situation. During the appointment, I thought my rheumy had actually come to the conclusion that I didn’t fit any diagnosis clearly. I was pleased to find that I was fine with that. In the past I have unintentionally placed a lot of significance on the diagnosis, and all that has done is left me upset and confused. I cried when I first got the diagnosis of lupus, and I cried when the diagnosis went away again so clearly neither option was going to make me happy.

At the end of the appointment, my rheumy suggested of the medication options available we go with the one that works best for lupus, and she handed me a blood test form which had PsA and SLE (Psoriatic Arthritis and Systemic Lupus Erythematosus) written under clinical details. My nurse explained that sometimes people do have both running concurrently, and that that may explain why I’ve managed to simultaneously get better and worse on certain medications as they work differently with different diseases. I don’t really know if any of that amounts to a diagnosis. It sort of seems like it, but the last time someone actually said to me “yes, it’s definitely lupus” and yet later they were surprised when I thought I had been diagnosed with it, so I’m not making any assumptions.

The thing that I do know for sure, is that I was okay with it either way. I didn’t feel the need to cry, nor did I feel any relief or positive emotion about it either. The strongest thing I felt straight after the appointment was a desire to go buy some chocolate, but I think that was more down to the fact that I had the injection and four vials of blood drawn all within the space of about five minutes.

I think the reason I’ve placed significance on diagnosis in the past is that there was still a little part of me that felt maybe it would change something, and I was in a round about way still looking for that “better.” Of course I would still really really like it if things did get better – I wouldn’t be looking at new medications if I didn’t – but I’m doing my best not to hang everything on that. My new mantra is going to be: “Things are okay now, and anything else is just a bonus” and I’m going to do my best to listen to my own advice.

Thanks for Reading 

Little Miss Autoimmune

There's only so long you can be a bitch...

When I was first diagnosed with arthritis I was a bitch. Hmm... that kind of sounds like I was a bitch and then I got diagnosed and I wasn't anymore. What I mean is, in the first few weeks after I was diagnosed, I was so depressed and angry, I was a bitch to pretty much everyone I came in contact with.

To put this in prespective, I was diagnosed on New Years Eve. I'd planned to go to a New Years party that night. When we got out of the doctor's office that day my Mum told me alcohol was probably not going to be very good for me, but that to make myself feel better I should go out and get drunk (to this day I'm not sure whether she was joking.) I'm not really a big drinker, so this was pretty unusual advice, but I took it and spent the New Years countdown drunk and crying in my friend's stairwell.

But. There is only so long you can be a bitch.

A little while back my supervisor at work was having problems with her knee. She said being in pain was making her grumpy and she didn't understand how, being in pain all the time, I wasn't a bitch all the time. The thing is, there's only so long people will forgive you for being a bitch. After that the being-in-pain excuse wears thin and you'll find you're not only in pain, but you also have no friends.

Of course, now I think I've taken it to the other extreme. I worry so much about being a burden on other people, being in other people's way or complaining too much, that I constantly apologise. Often I apologise when things aren't actually my fault, like if someone isn't looking and walks into me. I feel because I walk with a crutch surely it must be my fault somehow. The other day my friend pointed out to me that I often apologise when things aren't even a problem, like I sometimes apologise to people for standing next to them - I don't know why, I think it's a sickness.

My new solution to feeling I complain too much is to complain more but in a more obvious way. Instead of trying to hide the fact that I'm not happy I'm just going to yell out "I'M IN PAIN" and then just carry on as if I haven't said anything. My friend has also offered to complain for me at times when I get tired of complaining. That way is more fun than complaining about complaining, although saying "I'M TIRED OF COMPLAINING! MY VOICE IS SO WHINY, I CAN'T STAND IT!" would be funny too.

Little Miss Autoimmune