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.
BA
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.
BA
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