It's Tuesday, January 9, 2008
I get so tired often when I'm working on computer stuff that I simply hang my head down to stretch and rest it but then have difficulty mustering the energy to raise it back up again. Seems silly huh? I was walking up the stairs a few minutes ago when I saw a piece of gum wrapper on the stairs so I stopped, took hold of the railing, reached down and picked it up and as I began to look at it, I began to lose my balance and had to grab the other rail to steady myself before continuing up the remainder of the stairs.
I still have body shocks (Myoclonic jerks) when going to bed or just resting on the bed or after long periods of sitting, like when I’m working at the computer, and to say the least, they are frustrating to experience. FYI, the medical field recognizes that hiccups are Myoclonic jerks of the diaphragm. Learn something new every day.
Now is a time when I wish we had a hot tub or Jacuzzi bathtub so I could sit in it and relax all my muscles at once with the heat but not have to contend with the cold air upon getting out.
It is hard for me to keep my train of thought when typing (like now) and especially when I’m listening to someone. CC sees it immediately that I’m struggling, normally even before I have recognized it myself. One or both of my eyes slowly begin to cross and the eyelid begins to slowly close against my desire to remain focused including eye contact.
There was a situation that happened Sunday night where I nearly passed out from the pain I was experiencing and managed to call out for CC who came and helped me to stand and she called for Missy who came and they both helped me get back onto my bed. It was the worst pain I can recall experiencing, and I don’t wish to recall it. It has come to pass that I have to have my phone with me regardless of the room I go into, just in case. It feels like my independence is ebbing away slowly, and I can’t stop it but only watch it go.
I have a nurse who comes on Mondays or Tuesdays and on Fridays to get my blood draw/sample and check me out, run my vital signs, etc. She was here yesterday and it took three tries to get the lab drawn because the veins in my right arm blow out/collapse under the stress of the draw so she succeeded in drawing it from my Left arm, but it provoked a topic we have discussed which is to pursue having a medical port put into my chest so we can do away with the arm, wrist, back of the hand pokes for the weekly labs. Sometimes I have to have my labs done daily if I have become particularly weak or if I am over-run by HKPP symptoms. So the real consideration now is to have a medical port placed into my left or right chest so all IV’s blood draws and labs and such can be easily accessed with minimal pain to me. CC’s mom has one as does her niece, Angel.
I came to the realization this afternoon while talking to CC just before she left to pick up the kids from school, that many realities are well underway, it’s just that I haven’t accepted a number of them yet because I don’t want them to be true. As I verbalized that, she didn’t say anything, just gave me a hug of confirmation.
I’m going to try taking a bath for a little while, even though I don’t fit into the tub very well; baths have had a relaxing effect on me over the years. We used to vacation in Monterey at a place called The Cypress Tree Inn because they feature a couple rooms which were 2 room suites each with a hot tub IN one of the rooms, including a fridge and cable TV in the room with the hot tub. Their rates are prohibitive now, but there was a time when that was affordable and considered “relaxation”. Now we shoot for a few nights stay in an Embassy Suites hotel with an indoor pool so that the kids can swim night or day and I can melt away in their hot tub if it’s not too hot. Wow. What a digression. Haven’t done that in a while.
Yeah, so until later with more energy, peace.
No comments:
Post a Comment