Friday, July 11, 2014

Electricity and needles

I woke up early and was procrastinating getting ready for my appointment. The paperwork had said to shower the night before which I hadn't done that so I had to shower that morning. Already a rule breaker ha. 
I even shaved my legs which is rare these days since a razor in a numb area is never a good idea. Anyhow I was showered and ready around 11:30.
I'm not sure why I took the time to blow dry my hair as it crinkles up upon any contact with humidity. 
I used to be able to deal with my wavy hair but my medication curl just gets frizzy and it's so ugly! 

Ok I got off topic so we arrive in the parking structure a little before 2, we have to stop and get a visitors pass. Then there's a patient registration office where you have to wait until your name is called and proceed to a certain desk number. Seemed a little weird. 
Anyhow once that was complete we found the specific elevators we needed and went to the 5th floor. 
Upon arrival there was another registration desk and a waiting room. 
My appointment was at 2:30 and I was called back about 2:45 by a doctor who I thought was going to conduct the EMG. 
He asked me several questions and then proceeded with the normal exam. 
When he checked my reflexes I thought I may lose it though. I was trying so hard not to laugh as he hit my ankle over and over again. He kept turning my leg, then my foot and expecting different results. Sorry buddy clearly no one told you I don't have reflexes! 

He left and said he was sending in the tech who would conduct the first part of the test. For those of you who don't know part one consists of being shocked over and over again to test nerve response. Part two consists of a needle being placed in your muscles and they ask you to move said muscles while the needle is in there. Part two has never been a favorite of mine. The first time I had it done I cried. 

Anyhow Brian came in to do part one.
He was a younger guy and very nice. 
They mark you with a sharpie in all the areas they are going to shock. I'm not entirely sure what they are always measuring but they always have a tape measurer out during the procedure. 
First was my left hand and arm. 
This was the first time I remember my fingers moving while being shocked so maybe that's a good sign. 
The dreaded behind the knee ultra shock always leaves me squinting and fighting back the urge to yell.
He left the room and came back and said he had to redo some in my hand. He kept apologizing, and I kept telling him it was alright. It's his job to shock me as much as I don't like it much.
He then said we were going to do the right leg but not as many as my silence left him thinking I may punch him in the face. My silence is the only way I can get through it without screaming so I just work on deep breaths and hope for the best. Once he was done he said he was going to have the doctor review them and then the doctor would be in for part two. 

Cut to what felt like an eternity later, me laying on this hospital bed in a stupid fucking gown that doctor one insisted on that I probably could have avoided! 
"Come the fuck on already!" I said out loud. It was almost as if he heard me because there was a knock on the door a minute later. To my surprise it was another doctor. 
My dad said "oh they send you in to do the painful stuff" he said "well I am the boss" in his looks he reminded me a lot of the police Captain from Dexter (Geoff Pierson for those who don't watch dexter). 
The first thing he says "who told you that you have Cidp?" And I was kinda like blown away and I'm like "the last 3 doctors I've seen" then he asked if they had elaborated on that and I wasn't really sure what he meant. He then proceeded to tell me that there are different types of Cidp. 
He said Cidp was a demylienating disease and my nerves show no sign of the mylien being damaged. He said without the old EMG it's hard to say. 
So at this point my mind is blown. 
Either A) my meds have actually worked and my nerves are rebuilding or B) I was misdiagnosed by 3 neurologist. 

He then starts up the test and was very friendly and kept joking which always makes you feel more comfortable in this situation. "I hope you never go bankrupt they will want to sell your artwork" "avoid the DIA they will want to put that on display" 
He got to my thumb and told me "this is guna pinch a bit" and I made a gasp because it hurt like hell and he's all "I told you it was going to pinch!" 
Anyhow the test proceeded to go okay. The calf muscle with my muscle flexed was incredibly painful. 

After the test completed he said he is going to go over the results with my new neuro. I'm glad that there is two doctors who really know about this disease that are working on my case. I'm hoping that I will finally be able to get some answers about everything. 

Last night while on the deck my dad and my brother both told me how proud they are of me and how I've been handling all this and that was really nice to hear. 
Just taking it one day at a time and trying to keep pushing myself a little more each day. 

That's all for now! 
Xo

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