Tuesday, November 10, 2015
Monday, September 7, 2015
A friend in need is a friend indeed. No truer words for me because I need my friends like never before. They come through in spades. Or seven no trump, grand slam style. Being this sick has created change in all my relationships. I am overwhelmed at times by the positive affect this disaster of a disease has had on my relationships. I have experienced a deepening in connection that, while not entirely surprising given the high caliber of my friends, is still mind blowing. Thanks aren't enough so my dear friend(s) I hope you know how much difference your place in my life means. Thanks for bringing perfection into reality.f
Sunday, September 6, 2015
I need to have a shower but I ask why. Ditto, brushing my teeth. Even going to the toilet I put off till the last moment. These activities of daily living (ADL) have become so arduous I now put them off. Unable to assist in anyway, I am thrown around. This is not anyones fault, it's just a matter of gravity and reality. No to a hoyer lift so don't bother suggesting one. In fact, while I'm rejecting that potential solution, let me also say that many people, in their hope to be helpful frequently offer suggestions that have already been considered, maybe tried and rejected. Unless you really live with this disease (i.e., you are my caregiver or other primary in my life) you probably are just wasting my time and yours and these days I am too lazy to explain to you why I reject your proposed solution to a problem I mention - like constipation. When I need a solution to a problem, I think of who might have a particular skill set and I actually ask for problem solving help. Saying or complaining about not being able to shit is not a request of you to advise me on the need for more water, or fiber, or whatever. Not to be ungrateful but can't you just be sympathetic when you ask me how I'm doing and I tell you the truth? Or we can just talk about the weather...f
Friday, September 4, 2015
I am writing, letter by letter, on a technological wonder, using only my eyes. There is a camera attached to the computer that has software that picks up (when I'm calibrated properly) where my eyes are looking. My eyes are your fingers Totally fabulouS idea. Actual execution of idea into reality is a cdifferent story. I am really missing the good old days. And I am pissed off knowing the technology should and could be so much better. Especially for the price. And the gross necessity of such equipment almost always instigates a fight with insurance both private and medicare/medicaid. Like helping someone like me who can't adequately communicate 6giverbally, 6gi5gi5giis a unnecessary luxury. okay i am not going to go back and correct the preceding mess. Needless to say, working with this very expensive software is a lifeline, but that does inot make it good. I feel like I'm driving a 1986 Ford Pinto when I paid for a late modal Lexus. come on, we gotta do better! And we can dammit (well, not me, per se, but wtf is up with the Apple geeks?
Wednesday, October 16, 2013
Sadly my brother left us. I am utterly defeated, my heart broken, sadness overwhelming. At same time, my significant other grows more careless , distant and withdrawn. Emotionally cruel. Dropped me on Thursday, not intentionally, just not present or paying attention. No broken bones, hut sprained wrist and very bruised ribs. I grow weaker by the day, more physically needy and dependent. Need a plan to leave husband, have 24 hour care. Between rock and hard place. Not safe. No safe place to be. Emotional & physical hell.