Some get a party, I get botox

With a month until my 21st birthday I’m hit with an emotion that I can’t even begin to describe. Most would be planning their parties, sending out their invitations, and getting venues booked, and while that sounds like a nice idea, it’s just not me! Dinner with a few friends is perfect and that’s because this year I’m actually well enough to do something.

Last year my birthday was spent in bed. Not exactly celebratory. The day after I managed to go out to the beach, and then have a little ice cream but ended up vomiting it all back up and was in bed by 5 that evening being the crazy 20 year old that I had just turned. But I had the people around me who mattered, and they didn’t care that my head was in a bucket. It’s funny though, even my 18th wasn’t some big celebration, and looking back on it, it’s most likely because at that point I wasn’t getting proper treatment for my headaches and I was being plagued with them constantly and didn’t know how to manage them. Not that I’m able to live headache free now, but we’re getting there.

I’ve been fairly quiet on the blog front about what we’ve been doing treatment wise, and if you don’t follow my instagram you won’t be up to date with what’s been happening. I’m not really sure why that is, I guess in a sense I haven’t wanted to jinx it, and I always receive rounded eyes of shock when I tell people. The current route for my headaches has been botox and so far it’s shown some sign of improvement. It’s a little complex to explain because it’s not treating my chiari, it’s treating migraines, which I have as well as chiari, but present slightly differently to the normal type that most people get. Anyways, the good news is, its working! As for the immunology side of things, there was talk about potentially starting another immunosuppression, but we’re not going to do that anymore. The reasons for that are again kind of complex and I wouldn’t be able to explain them as well as Doctor B does. Long story short (if I can) when I had the hospital stay and did the IV steroids I should’ve had a better reaction to the medications, and I didn’t, which indicates some of my symptoms might not be autoimmune related. But, we just don’t know. So we’re kind of taking a risk by getting me off all immune related medications (steroids and chemo) and seeing what happens!!!

This could result in one of two ways; nothing happens and I continue to improve so we then know it wasn’t autoimmune related and we do have theories on what it might be, or, I go into a huge flare and we try and treat it. Before all this happens there is the risk of adrenal insufficiency as I taper off steroids, a process that I seem to have been doing for what feels like years, and I think is actually coming up to a year, but I have to be extra careful with my kidneys because I have Kevin the Kidney Cyst and his Friends hanging out on mine. Yes. I named the cysts on my kidneys. I figured if he’s going to be 3.4cm he deserves a name for being an over achiever.  


The contrast to how I feel from this time last year and now is a little shocking. I remember the nights where I was up at 3am, barely sleeping, and somehow making it through 9-hour shifts at work! I was on 10 times the amount of steroids I am now, at a dose of 50mg a day, and I didn’t recognise myself in the mirror. Sure I still have my days were I can’t get out of bed, where I go over a week without washing my hair, or I’m so tired I can’t be bothered eating but now I’m finally starting to see my cheek bones reappear and Doctor B has stopped calling me chipmunk, so I’ll take the small victories.  

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