Apology and Promises

I’m back!!

I’m sorry!!! (Sorry for not posting in so long… not sorry for being back)

I have been overwhelmed, and for the most part, ignoring the whole “You have a life-threatening chronic illness” aspect of my life. Instead, I’ve been focused on the “You’re an idiot… such an idiot… PhD?! Really?!” aspect. Fortunately that focus has paid off and I passed my qualifying exam!! I’m an official PhD Candidate!!

And what did that cost me? Infections. Apparently I get infections when stressed. Remember those bright, beautiful red streaks from nearly two years ago? Well they came back. And brought friends. Lots of friends. Those friends apparently don’t like antibiotics and become resistant around antibiotics. Fortunately, with the second round, I managed to beat the two red-streak infections I had in my feet. But then two more came back… and that’s where I’m currently at. Doctor appointment is on Monday. Wish me luck.

So that’s the apology and brief update… here’s the promise: I will add more of an in-depth update, covering more of what has been going on in the wonderful wild life of Loeys-Dietz Syndrome meets PhD insanity. I promise I won’t wait another year to post again… honest…

Advertisements

Life, Cardiologists, and Stuff

The past few weeks have been hectic. Since moving to a new state I have been seeing new doctors and new specialists. This always seems to result in my seeing even more specialists and, if I’m even more unlucky, my needing tests.

When last we met I was about to have a colonoscopy and a cystoscopy (gulp). Both went well and both were normal. I had a feeling the colonoscopy would be as I hadn’t been having bad GI symptoms for quite some time┬ánow. The cystoscopy being normal is both good and bad though. There’s nothing wrong with my bladder and I definitely don’t have a tumor (yay!) unfortunately that means that my hematuria is probably coming from my kidneys (boo!).

I now fully understand what people mean when they say it feels like they are peeing shards of glass after a cystoscopy. Fun. Honest. You should try it.

But whatever. For now I get to check urologist, gastroenterologist, and neurologist off my “Seeing anytime soon” list.

Meanwhile, I see a neuro-muscular specialist in a little over a week. That appointment has me very nervous. Hopefully I will get an answer as to why my muscle enzymes become mildly elevated at times. Preferably without any painful tests.

I did see my cardiologist last week. I’m still wearing the effects of that appointment:

heart monitor

A handy-dandy Event Monitor

Apparently if you say things like “I feel like I’ve been having more palpitations lately” or “my last monitor showed a lot of PACs, PVCs and SVTs” it will earn you one of these magical devices. Who knew? At least it’s only for 7 days… *sobs*

I really do hate Event Monitors. Mostly because I end up with horrible reactions to the electrodes.

Yeah… The hatred is strong with these things.

Oh well. As far as chronic illness perks go, this really isn’t too awfully horrible… (Do I sound convincing?)

Life goes on. I am almost done with my first year of PhD school. I hadn’t quite realized how difficult this PhD program was going to be (hence why my blogging has slowed down to one post a month… I will do better…). On my worst days though I curl up into a ball, cry, and curse my luck at having to juggle what feels like a full-time illness while studying molecular biology. But I feel as if there may finally be light at the end of the tunnel. At least, for now, I’m fairly certain I won’t fail out of the program.

Sometimes, though, it’s just very hard to not let my illness be an easy excuse to skip class/lab work and sleep for 24 hours.

Thankfully that’s what weekends are for.