To start off with a brief clarification, it has been… 28 months (ish) of dying toes, joint pain and feeling shit, but a year to the day that I got a positive test for cryo 😉 A year ago today that I got given the official “looks like vasculitis” nod. The cryo label is still a rather non-committal ‘probably’ but as frequently grouched about in the past, my blood tests for cryoglobulins at any significant level are not consistently positive. That means that despite cryo being a pretty good explanation for all my symptoms, progression etc., I am currently having to be content with a label of livedoid vasculitis/vasculopathy. This is much more of a descriptive diagnosis than a specific ‘thing’ (as it relates to me anyway), but without positive tests from a biopsy or some concurrent positive blood tests, I won’t know exactly what kind of vasculitis I have. I very well may have an overlap with some other kind(s) of connective tissue disorder; APS, lupus, fibromyalgia… NO ONE WILL EVER KNOW MWOHAHAHAHA!!
Regardless. It doesn’t overly matter. I am a year on from a bit of a breakthrough moment. Someone earlier asked me if it really was something to celebrate… It feels like it. Without that positive test, even if the label didn’t stick (tee hee) (that is funny because sticky blood… maybe a bit too subtle a joke??!), it eventually led me to getting in touch with both my current consultant and the specialists at Cambridge, and to finding the most lovely bunch of nutters and warriors (many qualify under both headings) at the Vasculitis UK charity.
(Most recent doc discharging me after the rituximab called me a “very pleasant young lady” by the way. I am feeling decidedly smug about that. This is the… Fifth time I have been called this by a medical professional!! Either I am really bloody wonderful, or they need to sharpen up their variety of adjectives. Or… It was love at first examination!! Ooooo yeah 😄).
Behold! The actual post itself from a year ago (facebook post – the blog was only an increasingly repeating twinkle in my sticky blood…):
“Just had one of my first positive blood tests back (other than the occasional “oops your kidneys are a bit sick…”) and I think they have decided stupid toe death disease is officially cryoglobulinaemic vasculitis, which likes to be best buddies with things like rheumatoid arthritis and lupus (which I am under investigation for already given stupid sore joint disease).
Upshot is, it is defo autoimmune (*gasp shock horror etc*) and it is going to need long boring courses of immunosuppressants to treat it so my toes stop trying to die Other possible victims as well as toes and fingers, will apparently be my kidneys and according to the internet, the best everyday treatment is to keep me above average body temperature so the bad little antibodies stay dissolved in my blood plasma and stop clotting up my digits 😀 [Mum] – medicine says I can wack up the heating :P”
By this time, I had already determined that the cold hurt; my weird purply mottling (livedo reticularis) is more pronounced when I am cold, and I get increasingly sore and unable to move if I get chilly. Other times, I feel cold when it is downright unreasonable to do so. The weekend at home in Scotland being an example; I was making the woodburner do remarkable things and everyone else was looking at me like I had lost the plot and opening doors 😀 It was quite nice to finally get some kind of diagnosis – and subsequently very upsetting to have it removed. Until then, it was becoming apparent it was a chronic illness of some sort, and I was curious, had paid attention in biology and capable of reading and therefore it was blatantly obvious it was an autoimmune disorder of some kind. I had known it as ‘stupid toe death disease’ (or similar) until that blood test. This was the first time I let my mind focus down to any specific family of diseases. It was the first time I heard the term vasculitis. It is really bloody uncommon (ANOTHER joke!! I am on fire today 😀 ) and it was something that had never been mentioned until that point by my rheumatologist, despite her having enough suspicions to go ahead and do a complicated and fiddly blood test. I started off my research, armed at long last with a NAME for what was happening to me. A name can be a very powerful thing for validating your condition to yourself first and foremost, and then to explain and validate it to others.
Anyway. A year down the line, the prediction of toes and fingers was borne out. I have lost a toe. I am kinda happy about the actual losing part to be honest, as the dead little shit that was attached to me was excruciatingly painful and putting that bandaged foot down onto the ground (although incredibly groggy post-anaesthetic!) was one of the best moments in the last year! I have had all manner of immunosuppressants; daily hydroxychloroquine (was already on that one to be fair…), prednisolone, just had third infusion of rituximab… Two rounds of plasma exchange – five days at a time. Two infusions of cyclophosphamide. Now on daily MMF… ‘chemo-lite’ 😀 I still have functioning kidneys with only the occasional hiccup re. them. My blood tests are slowly showing a little improvement from a rather hilarious spike in LFT’s as my toe died. I am on warfarin – probably for life – to stop my blood being sludgy, and my toes have managed a few months without any more ulcers forming. THAT one is an exciting accomplishment!
My daily drug list is now pretty exciting… I found the below again a little while back, by the talented Edward Monkton. It pretty much represents my day-to-day routine 😉 When you start talking to your tablets, you have been ill for too long or are bored. It is only if they talk back that you should be concerned. That’s what they said anyway…
I am enjoying not being in hospital for ten minutes anyway. Touching an entire wooden table whilst typing this… I got to see my OTHER fave dog the other day, for the first time since September. We were both very excited 😀 Coincidentally, the below picture of us both is from a year ago today as well 😀
Reading my way through the entire Discworld series is going well and quickly… I ordered them all, identified the gaps and stole a huge armful from the Parents’ house. Currently averaged one every 1.5 days 😀 Quite impressed with that!! Had an utterly shite day yesterday; at one point I will happily use the expression ‘could not move’ and for once literally mean it. I was whimpering on the sofa and for once it wasn’t even pain or fatigue, it was as if my brain and body just stopped communicating – I tried to sit up and it just didn’t happen. Several times. So I gave up and went back to sleep for a few hours. I feel a LOT better today. Think it is some combo of fighting off a cold, post-rituximab tiredness, dropping pred a little bit (have slightly tweaked the drop to make sure that doesn’t happen quite so dramatically again), and travelling back down/being awake for too long the day before.
I have noticed this before and this morning confirmed it; the rate my hair is falling out definitely increases on bad days like yesterday. The below picture is a little bit ick, but please be reassured that this is all clean head hair, salvaged before it went anywhere near the plug, so as to appease The Dad, Guardian of the Mysteries of the Inner Workings of the Shower Drain. So yep. When I say to people that I am losing more of my hair every day – admittedly it isn’t this dramatic every single day, but this is what I am losing most showers.
The fact I still have a reasonable head’s worth of hair is solely testament to how stupendously thick my hair was to begin with, as this has been going on for two months now!! This is by the way (it should go without saying) not the result of any kind of deliberate pulling my hair out. I am much more gentle than previously with the shampoo and conditioning, and since it got chopped shorter haven’t bothered with the hairbrush (I dabbled briefly), as it comes out just as easily running my fingers through it.
As a final blehhh for today, featured pic and below is the fabby poster designed by one of my Vasc UK buddies for the fundraising Little Broo is planning in May. If you have not already done so, I would greatly appreciate you donating even as little as a quid through the JustGiving link: Toetally Awesome The charity means a lot to me and many other people; Vasculitis covers a multitude of related sins and yet still manages to be pretty blinkin’ rare. This makes a diagnosis all the more difficult and stressful to deal with and learn about, and the charity is an absolute lifeline.