Tuesday, April 30, 2013

Accident-Prone Hormones

The last couple of days have been a bit rough. I knew they were going to be. I realised last week that it was highly likely several factors – work stress, vitamin D being due, PMS, medication changes and side effects – were all going to combine into a flare. So I’d done my best to make sure I could get through it as smoothly as possible. What I wasn’t counting on, was a sudden and dramatic increase in my own accident-prone tendencies. In the last 24 hours I’ve had several mishaps ranging from completely-silly, to came-very-close-to-serious-injury in severity, and it’s left me in a pretty sore state.

I was talking with some friends the other day, about those “facts” that you believe for years because someone you trust told you them. For example, for years I believed my grandmother had stigmata because when we were little my sister told me she did. I don’t think my sister remembers this, so I have no idea whether she really believed it or if she was just messing with me, but at the time I took it as fact and it wasn’t until years later I thought to question it.

When I was a teenager, my mum told me that having PMS interferes with your depth perception. At the time, I took this as fact, not least because when she told me that I’d just opened a door into my own forehead, then misjudged the gap and hit the doorframe on the way through. She told me that she had exactly the same type of accidents herself every month.  

I didn’t question it, at the time. Honestly, I was too relieved to question it. For years I’d felt like I was loosing my mind, when I couldn’t do something as simple as walk through a doorway without injuring myself (just try explaining to someone that you really did get a black eye walking into a door, and see if they believe you) and she has finally offered a seemingly plausible explanation.

Last night after my dad came and rescued me from one of my more nasty accidents, my mum’s explanation popped into my head. For the first time, I wondered if there was any scientific basis to this, or if it was just something Mum had said to make me feel better. My PCOS symptoms have been really out of whack lately, so if it is true that could explain why the number of accidents has been worse, but I’m somewhat suspicious that I’m making connections out of random events.

So here’s my question – does anyone else experience this with PMS? Particularly anyone with PCOS/Endo or anything similar? Also if anyone with a medical background knows if there’s any truth to the idea that hormones have an impact on depth perception, I would love to hear your thoughts.

Thanks for reading

Little Miss Autoimmune

Saturday, April 27, 2013

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

Thursday, April 18, 2013

Move it... and sometimes lose it anyway.

I think every chronic illness patient has a phrase which they particularly dislike hearing. For some people “You’re too young!” or “But you don’t look sick?” really hit a nerve. Personally I don’t mind those so much. I think they come from a place of misinformation and while it can be irritating to hear them over and over again, it’s the not the person’s fault if they don’t know what they don’t know.

The one that really irritates me is: “Move it or lose it.” I dislike this, because I don’t think people have any idea what it really means, they just like parroting catchphrases and particularly like catchphrases that rhyme. I also dislike the fact that this is offered up as a piece of advice. For one thing, when it comes to autoimmune forms of arthritis yes, absolutely exercise is important, but you may still “lose it” anyway. Last week one of the joints in my finger stopped moving completely and has been locked in place since. It is somewhat swollen, so I’m hoping that maybe if the swelling goes down it will “unlock” but it could very well be stuck permanently from now on. I take pretty good care of my hands. They’re the only joints I consistently do any physio exercises for, and everyday life provides plenty of movement for them, but they are also the area of my body where I have lost the most range of movement and function.

When it comes to degenerative forms of arthritis (for which move it or lose it is most relevant) it’s still just a catchphrase not advice. It doesn’t explain what type of movement is helpful, and doesn’t do anything to address any barriers. When I hear this, the first thing I picture is someone swinging their joint wildly back and forth repetitively – that’s not a way to prevent arthritis; that’s how you give yourself RSI. It really should be “move it or lose it, but don’t forget to plan and pace!” But I guess that isn’t as catchy.

Perhaps you may think I’m being unfair – the phrase is just supposed to be the reminder and motivator not the sum total of the treatment plan. Unfortunately, I know from my mother’s experience that this isn’t always the case. When she began to have severe pain in her fingers and one of her joints kept locking, my mum went to the doctor who told her “It’s osteoarthritis. Move it or lose it.” and no, I’m not paraphrasing, that was word for word all he had to say on the subject. He didn’t even look at her hands. While my mum was at the time at an age where onset of osteoarthritis was more likely than an autoimmune form, I found it astounding that given she also had psoriasis, psoriatic arthritis in a close family member, and the joints affected were DIP joints (the end finger joints; most often affected in PsA.) that he wouldn’t at least investigate. I insisted Mum go back, and at the very least get some clear guidance on what exactly she should be doing. She was again dismissed with “move it or lose it” as her only advice.

Swollen DIP joint
(Distal interphalangeal joint)

Some months later, (after she had decided to retire as she was unable to complete parts of her job without full use of her hands) Mum saw another doctor, who actually looked at her hands, and it turned out she did not have osteoarthritis but a treatable condition. The treatment plan included complete rest of the joint for two weeks, so the “move it or lose it” had in fact been exacerbating the condition.

“Move it or lose it” is not advice, nor is it in itself a treatment plan. It would be like telling someone who has depression to “turn that frown upside down” in place of offering a referral to counseling. If you’re a medical professional, please realise that when it come to exercise it’s not the fact that we need to do it that’s confusing people. It’s the how and what to do that’s the problem. So if you’re still really keen on using rhyming catchphrases, then by all means say “move it or lose it” but follow it up with a referral to physio or at the very least a proper explanation and plan.

Thanks for reading,

Little Miss Autoimmune