Thursday, August 29, 2013

Nothing is ever simple



I went to see my GP on Monday, as there were several issues I felt were starting to get out of control – the weird bulge growing on my forearm, the even weirder red painful dots on my skin, and the ridiculous number of coldsores I’ve had recently.

The weird bulge in my arm is, as I’d suspected, tendonitis (inflammation in the tendon sheaths.) It’s likely being aggravated by the fact that it’s on the side I use Molly Stick, and I’ve probably been typing/using the mouse a bit too much lately (bring on the voice software!) My GP suggested the best course of action would be to ask my nurse to give me a local steroid injection, to bring down the swelling and to stop it interfering with the function of my hand. I always get significantly worse for the first 24 hours after a cortisone shot, so I’m guessing the days after having it done I won’t be able to use Molly Stick, making life a bit difficult. My nurse is away at the moment, so fingers crossed the tendon will have un-inflamed itself before she gets back and I won’t end up needing it.

My GP also noted that there is some swelling around my joints, in addition to the soft-tissue inflammation I’ve been getting, which may mean my PsA has decided it’s tired of being in remission. That’s kind of upsetting, especially as I can’t take anti-inflammatory meds because I have gastritis (inflammation in the lining of the stomach) but I just keep reminding myself that I was incredibly lucky to go into remission in the first place. 

I’m pretty superstitious, so I was fairly sure that the coldsores were down to a combination of suppressed immune system and the fact that I tempted fate with this facebook status a while back: 

Tubes of Zovirax are specially designed to disappear somewhere in your house, in between coldsores. Someday I will find their secret hiding place, but on that day I will probably not have a coldsore.” 

I’ve been getting them once or twice a week ever since then. My GP agreed that it is most likely down to the immuno-suppresant effect of the medications, and said I’ll need to contact my nurse to find out what I can and can’t do to support my immune system without it becoming counter-productive. It is in a round about way a good thing, because it means the meds are having an effect. But a little frustrating to find that my immune system is still over-achieving when it comes to attacking healthy cells and yet simultaneously becoming incompetent when it comes to fighting actual diseases.

When it came to the red dots, she said she honestly had no idea, other than to say it definitely wasn’t hives, shingles, an infection, or vasculitis (inflammation of the blood vessels.) All good to know, but it didn’t really get us any closer to what it was, so she got on the phone to my dermatologist. My dermatologist quickly added “a complication of the coldsore virus” and “a reaction to medications” to the list of things it wasn’t, but unfortunately, by the time I got in to see her, the red dots had all passed the point of being biopsy-able, so she couldn't give me a firm diagnosis of what it was. She did say, however, it’s likely folliculitis (inflammation of the hair follicles.) From what she told me (and a quick google search) there are a few different types of folliculitis, ranging from mild irritations to much more serious. The type I have is not caused by an infection or ingrown hairs, but by inflammation from the autoimmune diseases. To make things more complicated, the medication used to treat this kind can’t be used in people who have a positive ANA blood test, which I do (ironic when the fact that I am ANA+ is likely the cause of the inflammation in the first place!) Fortunately my dermatologist was able to give me a topical treatment instead, which should hopefully help to settle it down. 

When I mentioned the coldsores, she said that I may need to go on tablets for a year to eradicate the virus. I’m a little reluctant to do that, as I’m already on so many medications as it is, so I’ve said I will wait a while to see if they calm down on their own first.

So all in all, I’m feeling a tad –itisy at the moment. It feels at the moment like I’m not only fighting all of these diseases, but that they’re fighting each other, either making each other worse or complicating treatment options. I’ve never been a particularly zen person, but I do know that thinking like this, or getting upset and frustrated about it is just going to make things worse. So the other day I decided that any time a medical profession uses the words “Because you’re complicated...” I will mentally replace them with the words “Because you’re awesome...” Because I am.

Thanks for reading, 
Little Miss Autoimmune




Tuesday, August 6, 2013

The Hippos Have Been Fed

It's a bit of a good news bad news sandwich today:

Good News: My waiting game/hungry hungry hippos playing is over. My cortisol level came back slightly elevated, rather than low, so we can rule out Addison's Disease. My electrolytes and blood pressure are still low, but my GP says that it's unlikely to be anything too serious causing it.

Bad News: I have a rather yucky respiratory infection, which has made my asthma flare, and I feel like there is a giant cat sitting on my chest, squishing my lungs. I can't take normal cough syrup, and my blue inhaler makes my muscle spasms really, really bad.

Good News: My GP is awesome. I have a treatment plan that seems to be helping, and I found some gluten-free liquorice, and Irish Moss cough syrup, both of which taste really good. Plus my couch is comfy, and my teddy bear is pretty good company.

All in all, the bad stuff will pass, and I'm so relieved about the Addison's Disease, I can't be too unhappy about the infection. Just imagine me doing the most sedentary happy dance ever :-) 

Thanks for reading
Little Miss Autoimmune