Monday, December 21, 2015

What's Going On with Me: Or Me and My Zombie Arm

So, you know when you have a medical problem and they start running tests?

And those tests lead to more tests?

And then one specialist becomes another specialist becomes a team of smart folks trying to keep you alive?

That's my life the last few months.

In October, I went in for a routine 6-month arterial scan after my angioplasty and they found things they didn't expect. Instead of one blockage, now I had four. Instead of plaque, they found stenosis without it. Instead of pulses, they found a whole arm without it.

In November, the cardiologist started stressing, sent me to a rheumatologist and discovered that, instead of having peripheral artery disease (which is relatively common), I have this extremely rare disease called Takayasu's Arteritis. O.o

What does this mean?

I'm not 100% sure anyone knows.

I know it's meant 26 vials of blood so far. I know there's a bunch of arterial scans coming up and a slew of anti-everything drugs that I am taking for the next few weeks to start what is most likely a life-long series of infusions to tamp down my immune system. Apparently this disease closes off major arteries randomly (including in my eyes and organs) and then the vessels above the blockages get badly damaged.

The good news is I'm not hurting, I'm still running, I feel okay. 

The bad news is... well, I guess the worst news is the enormous risk of stroke/heart attack. The next bad news is that after I start all this medication, I'll have to work super duper hard not to get any infections.

I've told my family and everyone keeps asking how I am. How am I? I think I'm in shock. I keep waiting for someone to tell me it isn't true. How do I get some weird-assed random disease?

I'm scared. I'm scared of the money this is going to cost. I'm scared about having a stroke and being a burden to my wife. I'm scared of not being able to think about anything but the next set of tests, the next rounds of meds, the next doctor's visit. 

I also know me. I know that I'll figure it out, that I'll learn how to process this and understand how I feel beyond just this sick, dull horror.

Part of me wants to say, look. I've apparently lived with this for years, screw the medication. Screw the poison you want to pump in my veins. Everybody has to die of something.

Part of me says, hey. You have a good life. The best life. A woman that loves you, a home you love, puppies. You have to fight with everything to keep that as long as humanly possible.

Another part of me just says, I'm really tired. Let's watch Sherlock and have a glass of wine.

At any rate, that's where I am. Me and my zombie arm and the disease I have dubbed Hackysack Margaritas.

Much love, y'all.



Lisa G's said...

Work girl. Don't give up. Autoimmune disease are a basted in their on class. Keep running writing stay happy.

Lisa G's said...

Sorry autocorrect Bastard

Lisa G's said...

Work girl. Don't give up. Autoimmune disease are a basted in their on class. Keep running writing stay happy.

cbarends said...

I've lived with auto autoimmune disease for a very long time. When they want to start me on immune suppressants I refused. I work around my Crohns Disease...I watch what I eat...remove stuff that makes me ill....or if I love the stuff....I just know what to expect. lol Doctors are trained to give the worst case scenario so they can't be sued. Take their some research or find a group of people that struggles with the same illness. They can be a support....or give you hints on what works for them. Good luck and my prayers are with you.

Unknown said...

Life is too serious to take it that seriously , BUT you have to take care of yourself , the doctors will do what they can but its your BRAIN who commands and if you give up you will fail and you CAN NOY FAIL the immune system will follow the brain lead fight with all your strength mentally and it will succeed.

Katherine Halle said...

My heart goes out to you. Dealing with a similar situation (different disease) myself, I can appreciate the routine tests, the followup, the specialist, the team, surgery, treatment, worry, fear, and everything that goes with it. I just wanna wrap you up in a big hug and say 'we're gonna get through this'. But it's scary and isolating and I'm just so impressed with all the work that you're getting done because I've been dealing with my issue about the same length of time and have gotten absolute bubkis done :/

My thoughts & prayers are with you.