Tantrums
>> Saturday, September 5, 2009
I'm very, very drugged right now which means that I can actually sit up (sort of) and write a health update. I just haven't had the energy or been free from discomfort long enough to let you all know what's going on.
It's been a very, very trying time lately. There have been so many ER visits and so many problems that plague me that have no answers. It hasn't been easy for me to be hopefull and positive. I have to admit that I sometimes wish for death since my life (at least these past few weeks) has consisted of staring at my bedroom ceiling and crying or moaning or being stressed out.
I still keep up my routine of meditiaion, yoga and Tai Chi (when my neck will allow it), raw food vegan eating (especially lots of veggie juices) and rat therapy. I would love to get a wheatgrass juicer so I can start juicing and growing my own wheatgrass. Tastes like chocolate to me...go figure.
Anyway, I'm having a really hard time not throwing tantrums at the moment.
I've been itching so much my entire body is covered in scabs and rashes. All I can do for that is put on a special cream. Otherwise the only cure is a new liver (MELD is still 15 by the way). I'm either sweating for freezing. Or both. So far no actual fever has showed up on the thermometer but a breif 99.0. Transplant patients don't run fevers since they're immuno-suppressed but apparently no body cares about a 99.0. Only a 100.5 or above.
I've also had encephalopathy(that's ammonia on the brain) really, really bad. Running into walls, forgetting my birthday, hallucinating. It's absolutely horrid. There is no sense of self. You can't distract yourself because nothing holds your interest and you can't understand it anyway. It's been better tha last couple of days when I stopped taking Benedryl for my itching (it didn't help anyway). But I'm still rather crazy.
Somehow I managed to clean my room today, organize my closet and part of the attic. Excellet day; completely unheard of. Then I slept for almost 4 hours and woke up and immediatly took narcotics because my head was killing me. A nausea pill, two Xansex, a super-morphine, a veggie juice and a ginger/lemon/cayanne/honey tea later I'm very drugged, very itching, but able to at least keep something down and not want to blow up my head everytime I move. Thank goodness for deep breathing, home remedies, raw foods and pharmacutical narcotics, huh? I like to keep my health approaches balanced....
If ya'll didn't check out my blog from awhile ago called "Yellow Girl" you should. ( http://beccaspeace32.blogspot.com/2009/08/yellow-girl.html )
I got the sweetest letter from a fellow PSCer and how I had "changed her life" with that blog.
Anyway, I seriously need prayers, good thoughts, good energy and all that stuff right now. I totally believe in it and I appreciate it so much. Please ask for some extra stenghth, courage and grace for me right now. I sure need it! And pray for my mom, too. She has a sinus infection, a job and then ME, her full-time job.
My liver tests haven't been looking too horrible.
My MRA and MRI looked normal, so no anyurism or anything. Which is good but then....what is it?
My doc wrote us a presciption to go to the newest, fanciest health club that has a really warm wave pool thingy and all that good stuff....Hello hydrotherapy, massage, sauna and yoga class! Oh, and health food bar! Maybe I'll never leave....
