I know there’s a lot of y’all who care about me and what’s going on, so just wanted to fill you in on some of the latest developments.
As always, you can follow the blog as well. I try to post there daily, but lately, I’ve been in such a slump, I just haven’t been able to manage writing there as I should.
Okay, here we go.
[ul]
- The Testing: It’s done. It was a grueling 4 hours with much embarrassment because I can no longer do simple math, such as figuring prices. I couldn’t arrange those cubes into the shapes my tester wanted to see. I couldn’t remember the details of a very detail-filled story and so on and so forth.
Preliminary results show me as “high average” of those people in our country who have been tested for this.
What does this mean? I’ll find out next week when we all sit down together and go over the graphed-out results and determine where we go from there.
- The Meds: I cannot tell if they’re working, Kids. Sometimes I’m very active and animated, but on other days all I want to do is be left alone. My wife, bless her heart, never knows if she’s going to be dealing with Dr. Jekyll or Mr. Hyde when she sees me in the morning.
My shrink has upped my Lamyktal (sp) to 200 mg a day, and I’m still on the Welbutrin - both are for moods/depression. We’ll see how the higher dose Lamyktal does: Today was a very good day.
For the memory loss, I am on Namenda still. I was taking the Exelon patch, but took myself off of it for 2 reasons: a) I kept forgetting to put it on and b) it’s too friggin’ expensive. (more about that later)
- Me: In addition to what I have already told you, I am still having periodic rages.
These happen when I knock something over, or when I get frustrated that I cannot remember something.
Examples of this are as follows:
I can lay something down and as few as 30 seconds later, cannot find it.
Within making a comment, I lose my thoughts: I pause and people look at me expectantly, and I have to apologize, and make them wait. Sometimes it comes back, sometimes not.
When I get lost.
Today we visited my sister in law who is in the hospital, and several things happened in succession:
a) I needed to go back to the car to get my meds. The car was in the parking deck, but I could not find the deck, so I saw a security booth, and the lady inside told me to turn around. It was right behind me.
b) I got to the car, got the meds, and went back to the elevator but couldn’t figure out if I needed to go up or down. A very kind lady helped me out.
c) Couldn’t find my way back to the waiting room. Tried it on my own, got on the service elevator, wound up in the morgue, got escorted back to the information desk, and blanked on my sister in law’s name, so they could send me to the correct area. Luckily it came to me in a few seconds which seemed like an hour.
I got back to the waiting room, and took one of the pillows laying on one of the couches, excused my self, went to the stairwell, buried my head in the pillow, and screamed into it. That helped a little.
I am also still prone to weeping, and that doesn’t help the family when they’re trying to be supportive and strong for their mother, his wife, my sister in law.
We go back to see her in Neuro-ICU and I have to…keep…myself…in…check, and not let them see the tears or let my SIL hear the tremor in my voice.
Suicidal thoughts? No, I won’t do myself in, but I have thought that it might be simpler for my wife and family if I weren’t around, and at least D could have a chance of finding someone who isn’t as fucked up as me.
And don’t y’all worry too, okay? I have two grandkids whom I love dearly, and I would not deprive them of my love.
My day revolves around playing World of Warcraft, (Somehow being in another “world” makes me forget this disease and is somehow very therapeutic), riding my bike (only around the immediate area - I will begin riding with a group soon, though), reading (and forgetting what I have just read after finishing the book;)), and sometimes watching the Braves on TV, or old movies on TMC.
And of course, being here, and “talking” with my “kids”…
- The SSDI (Social Security Disability Income) Thang: It’s in the works. I have retained the services of the famous law firm Binder & Binder, but it’s going to take friggin’ forever to get that started!
The “System” sucks, doesn’t it? Like they say: I’ve paid into it all my working life and now I cannot have it when I need it the most???
Some of y’all might remember I used to work as a respiratory therapist, right?
Well, I can’t do that anymore, so I’m looking for work doing pretty much anything which doesn’t involve heavy lifting (rheumaturd arthritis), saving people’s lives, or figuring things out too much! ;)[/ul]
So that is where I’m at, on this day, July 24th (had to click on the time thing on the toolbar), 2009. Thanks for being here, answering my (sometimes) stoopid questions, and most of all, for understanding!
My love to all of you.
Quasimodem (Bill)