I am trying to read all the medical records. I am going to add stuff here that I want to remember.

2/24/15 ES 1-2 Emergent     https://en.wikipedia.org/wiki/Emergency_Severity_Index

Wolff–Parkinson–White syndrome….the only time people ever mention this is in ambulances or the ER. Here it is again. Of course the internet says it’s “very rare”   http://emedicine.medscape.com/article/159222-clinical#b3

IVCD-L…..Interventricular Conduction Delay….my heart does weird things on the left side

NSSTT abnormal….my heart does more weird things

My condition is listed as good, fair, critical and guarded on different pages. I found this on a page of hospital humor….

  • Fair: The patient is on a government medical care program that will not pay anywhere close to what we want to bill the patient, but we took an oath in medical school to take this paltry sum in exchange for that large perma-sealed diploma on our office wall.

guarded, which probably should only be used on soap operas

2nd day in hospital….“remarkable for mild dysarthria, which has improved since yesterday.”  I want to say no shit, Sherlock, you gave me solumedrol and IVIg!!!!!!!!

Reflexes are absent in the lower extrenities and 1+ upper extremities. Shows diminished sense to light touch in the legs…..the neurologist claims it’s from CIDP

Lots of pages show low anion gap and low albumin…..means I am a sickie

What the heck is a PSAT? Besides a PSA test for the prostate (in men only) or the pre-SAT test for college? Whatever it is, I am 8 and normal is 12-50 :-p

Iron 27….normal 37-170

For years, Hgb, Hct, anion gap, MCH, MCHC, MPV are too low and RDW is too high. My lymphs are too low at 17.7. Normal is 45.5-75.5.

Microcytic, hypochromic anemia    http://www.rainbow.coop/library/causes-of-anemia-especially-microcytic-hypochromic-anemias/

AChR blocking antibodies 24  normal is 0-25…..but it’s the closest I have ever been to being positive for MG with a blood test. My MG is considered seronegative.

My ECG‘s don’t look like the nice, repetitive beats you see on TV. They are all over, up and down, smooth and jittery. It says “cannot rule out anterior infarct” and abnormal ECG. Well…I am still here 🙂

A scary one is 6 respirations/minute 😮

Those bastards!!!! They cranked up the infusion rate to 500 when I fell asleep. No wonder I had the IVIg killer headache that required a wet cloth over the eyes and earplugs. From then on, they infused at 100!

After I complained about things, they sent in a social worker who said I was experiencing ineffective coping, difficulty sleeping (DUH….the air bed sounded like a jet engine), plus anxiety and emotional issues related to the disease process. Another duh….I was stuck in Utah, fighting for my life because they kept denying IVIg until I was in ICU! Then the nurses tried to give me 180 mg of regular Mestinon all at once….instead of a Timespan. Several times they missed doses of Mestinon and wanted to “make it up” by giving doses closer together. They obviously have NO understanding of MG/Mestinon!!!!!!! If I had not been alert and aware, they could have killed me 😦

Nurse after nurse wrote down that I was pale, but flushed….yup, that’s anemia and lupus. I turn very red under fluorescent lights. They finally put in my chart to turn the lights off unless needed.

One jerky nurse said my dysarthria only happens when I am upset at her. Ohhhhhhhh……if only! She was a bitch. It’s not a good combo for me to be incarcerated and ordered around, on high doses of steroids, with lots of med mistakes. Grrrrrrr……I can still feel that same anger just thinking about her. Most nurses were nice….but that one was a total dud.

That got me worked up. Lots more to read, but I have had enough for the day.

My back is getting the same sort of swollen and sore that happened last year around this time. Then after that, my hip went nuts a year ago. Last night I noticed that my left hip is very touchy….again. I cannot stand up more than a couple of minutes without excruciating pain 😦 I am also light headed, weak and feel sick. I wonder what’s happening this time?

And the stupid hernia just keeps getting worse. You probably don’t want to hear the grossness.