Jan 04, 2013
I am amazed that I have made so little progress improving my condition. I have had "resolve" before and yet I've failed to get with and stay with a program to increase strength and general well being. It seems that I only have one or if lucky two days where I can function somewhat normally. Then I'm in too much pain to get out of bed.
Or - due to my GI tract damage, I can only go for a day or two without aspirating during my sleep, sending me into severe pulmonary distress, fever, and increased disability. Right now, I'm taking so much laxative medication of multiple types that I'm nauseous half the time. Yet, if I don't keep my bowels relatively cleaned out, my gastric contents back up and into my lungs they go. It's so distressing.
My house is falling apart - a plumbing leak rotted the kitchen floor, all the cabinets and the stud wall behind - all the way to the basement. I was able to rip up the multiple levels of flooring, (a year ago) but now have rotting subfloor and I can see to the basement. I don't have the money to have it fixed either. Also, I can't afford heating and cooling, so my house is literally freezing. (my niece gave me an electric throw for Christmas - my cat and I huddle under it) My adult son and dogs just do what they can. It's stressful to not have my home put together properly. It's also difficult to not be able to do all the things I used to be able to do - shoot - I built my last house - designed, contracted ,and did a lot of the labor,. Now, I complain to myself and feel stressed. My basement and attic and basement are filled with all the crap from my huge home I had to move out of after my divorce.
I can't believe one person can have as many diseases and conditions as I have. I can't possibly live much longer, but it just seems like something very basic went wrong long ago that caused a cascade of disease. As far as I know, my kidneys are the only organs not diseased and dis-functioning. That's crazy. I put on a smile the one time a week I go out in public and no one truly knows all of the " " I face. I can't complain all the time, and no one wants to hear all the problems - I'd have no one willing to be around me. As it is, I've lost many friends due to them not understanding why I can't be there all the time for them like in the past. As much as we all would like to think we are good friends to others - lets face it - NO ONE wants to be around anyone who has nothing but problems happen to them. It makes you feel uncomfortable.
So - I continue to decline. Unfortunately, laxatives are like narcotics - your body habituates and gets tolerant of them so that they no longer work. Then you have to take more and more - hence the nausea. I know there's a colostomy in my future, but I refuse to get a feeding tube because I know it wouldn't solve the problem. There just isn't a solution. Because of that, GI doctors run from me. There also isn't a solution for my MS - I can't take the injections due to extreme reactions - so the neurologists run. My last one said "you need fairy dust" - I kid you not! When doctors can't help you, they too, don't want to be around you. I had one (when in the hospital) look at me and nod his head and say "well, at least I know I won't see anyone else today who's in worse shape than you". WOW - and his specialty is hospice care!
If you hadn't realized it yet, and if I hadn't - this journal entry is a VENT. I just realized I'm really hurting from having the laptop on me, so time to stop complaining.