Tuesday, April 29, 2008
Missy is in
On the health front:
Where to start that doesn’t already look like familiar ground?
Wanna guess what’s currently the list of diagnosis’s:
- HKPP
- Hyperaldosteronism
- Hyperphosphatemia
- Hypoglycemia
- Sleep Apnea (considered severe including 00:97 second gaps between measured breaths in their Sleep Lab)
- Hepatitis B (?)
- Chronic Back pain
- Diabetes Type II
- Progressive Myopathy (front and back arms {biceps and triceps, etc} and legs, quads and thighs
- Myoclonic Jerks
Because of the negative experiences and treatment we have had in the various ER’s, CC tries her best to keep us out of them, but sometimes they are out of her control and we have to go as a result of other circumstances
Bottom line is that I seem to get hit by one kind of attack or another at most every three days, of not daily, and these attacks nearly always don’t end up in the ER but happen in a restaurant, a car while traveling, in a meeting, during church service, in a doc office, while having the labs drawn, or even after eating a meal turning out to be high in salt or high in sugar. CC and Missy will carry me out (as inconspicuously as possible as to not panic the natives or said establishment) to the van’s front seat (if the kids are with us) and we head straight home to the couch or bed followed by more medicine to prevent the attack’s progressive nature. If left alone with no meds, I likely pass out from the pain and/or the physical exhaustion. The medicine intercedes where my body cannot.
I cannot walk medium to long distances anymore; I am almost always in a wheel chair that we have here at home. I walk with a cane now every day due to regular weakness in my right leg/side. I’m going to have to accept the probability of figuring out how to pursue one of those 3 wheel scooters so I can gain some mobility back. We’ll see.
We have a home care nurse who comes once a week to take labs and get a general assessment of how I’m doing and help us progress beyond the Kaiser wall. She’s a wonderful lady who knows her stuff and more than anything wants to see me well again. She is and has been a blessing.
Speaking of invaluable
My Aunt Judy has shown incredible attention and has gone far, far beyond the normal boards to met my and my family’s needs during these past 2 years in particular. My Uncle Norm has done the same while also volunteering weekly at a variety of places where he has become well needed and appreciated. I cannot imagine adequately showing them how much I appreciate their love for me and my family. When I end up in an ER, 9 of 10 times my Aunt (and sometimes my Uncle too) is there when I arrive or very shortly thereafter to help CC any way she can.
Barely more than they did before, with the exception that a GI doc is trying to prove or disprove me suffering from Hepatitis B…that’s a new one. A few more labs and he plans to make his educated opinion known. There is a possibility that he would do a liver biopsy, which I am in great favor of because then they can actually work with the liver itself instead of lab tests which is little more than a bloody True or False game with my blood. Average lab draw is between 8 and 14 tubes per visit. Average number of needle pokes to locate veins is 2 to 3 and as high as 4. I’m what the labs call “ a tough stick”; my skin is thick which frustrates a simple needle intrusion and the veins in both my arms are scarred and blown, meaning they cannot yield a fruitful draw and then they have to stick in the back of my hand or at the knuckle of my index fingers where a vein crosses over from the finger to the wrist.
I don’t look forward to the lab draw with the one exception of a lab tech named Dwayne who has never failed me (1 stick typical, 2 sticks rare. I consider him a friend even though I don’t know his last name. He’s got tattoos all over; arms, neck (front and back) and looks like he’s been there and back and we hit it off the first time I met him. He remembered my name the next time I saw him, probably a month later, even before getting the lab paperwork.
I wish I could stop all my meds and just clean out my system, but the fear of that following unknown is more than I can deal with, not the least of which would be the crap I would get from the nurses on the hospital floor who would be taking care of me as a result.
Each time I have a spasm attack or a paralysis attack (those have been more at night than in the day time), the muscles affected by the attack are permanently damaged by the potassium. This is called “myopathy” which I tested positive for back in 2006. Life right now is surreal to me. I’m feeling like I’m waiting for God to catch me up in His huge hand and tell me that the test is over and though I probably got a barely passing grade, that I’ve passed this part of my life and my family’s life and He will heal me back to independence and breadwinning with a renewed vigor for spreading His news through the skills He’s given me.
…Just not yet. Just not yet.
There are so many of you that I have not followed up on replying to emails and voice mails; Jared, David, Steve, Chris, Rob, Aunts and Uncles and cousins back East, My bro Harry, my brother and Encourager Art, my example Karl, my blood Kev, my true, true friend Neil- my brother for life as well as other brothers mentioned…the list goes on and the weight of the mere letters causes me to sink lower in my chair.
Please forgive, those mention and those not.
Bob and Carolynn…we remain speechless with undeserving hearts, broken in gratitude…
Certainly there is much, much more for me to pour out from thought but not tonight.
A question though, before signing off: who knows of a software that would allow me to speak into a computer mic and have those spoken words converted into text in a Word Doc or text file or so? This ability would prove very helpful given my situation. If any of you can point me in the right direction, that would be a blessing.
And now, for this evening’s understatement: I miss you; hearing from you, seeing you, texting with you, even visiting with you. When you can, email me when you’ve a minute or two.
Well, I’ve thought, phrased, rephrased, corrected and typed now for two hours.
fíne
