Arrested Respiration & Prison Stabbings

Well thank goodness, I’ll admit I was getting a bit nervous – it had been a couple of days without any sort of medical meltdown and we certainly can’t have that…

So imagine my relief when last night, I started peeing blood again, with the attendant pain and discomfort.. whew – huge load off my mind….

Called my Doctor at about 4:30am, during the Bataan Death March, Walk of pain I was doing and left a message – would there be any way to see me… well I guess because I’m one of his best customers and probably solely responsible for putting his kids through university… his nurse/secretary says, “Oh hey, Chris – just come by when you can and we’ll fit you in – if you want to call back and give me a time fine, if not, just show up”  — WOW — really, I’m such a frequent flier I get VIP service with a gurney reserved in my name at all times, just show up. It’s like the glamorous Vegas of the 50’s and I’m a member of the Rat Pack, my table always available in the velvet lined Armada lounge at the Sands….. I suppose on one level it’s a good thing BUT on a much bigger level it’s so not. Anyways, weather caused by the IVIG or not there is a bunch of debris in my kidneys (which is what the kidneys are supposed to do, filter and remove waste) but my debris is spectacular and as such, basically is having a old school Girls Gone Wild, Spring Break, Bourbon Street Drunken Mardi Gras Gala Jubilee… The debris is sharp, jagged & angry and spends it’s day plunging itself again and again in my ultra-sensitive Kidney tissue, like many small shanks at a prison for microscopic Convicts – I’m getting stabbed in the prison shower by my own body. My only remedy is pain-meds and wait until they pass… hopefully all on their own and no further medical intervention is required. It could happen tomorrow or in two weeks, no way of knowing.

Based on all the vicious side effects of the hardcore antibiotics he had me on, we decided it best to stop those right away,  it should take a couple of days for those to be processed out of my system. That being said I’ve been having some breathing challenges, normally I have shortness of breath when I’m in A-Fib but this is different. I had been thinking of the best way to describe it and what I’ve come up with is this –  it feels like my lungs are burning. Have you ever walked into a really hot sauna and that hot air hits your lungs hard for the first few breaths.. like that, the other example is, have you ever been camping and you find yourself standing right over the campfire and you get a face-full and lung-full of hot campfire smoke – it’s like that for much of the time lately. I assumed it was as a result of the meds. wrong…

Apparently the Myasthenia is starting to spread – this was always a possibility but we were hoping I had more time before it started moving and affecting other parts of the busted up temple that is my body. I see my Neurologist tomorrow and so we’ll see what she has to say and where we’ll go from here. It sure makes the whole sooner operation dates a very very good thing.

So that’s where I stand now – I let you know what the Neuro says…. anyone have any techniques for staying positive in the face of this never ending ordeal, I’m all ears…. it’s getting hard and I’m just getting so tired…

Have a Great Day, please…

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