I'm glad to hear you sounding so peaceful and relaxed. I'm sorry things are going so lousy with your body, but there will be some change eventually, things will not stay the same. I'm glad you're getting good meds and I hope they do a good job rotating them and keeping them working for you. I get really mad they illegalized medical marijuana because this was another option for people, non-narcotic and non-addicting, and I understand it helps with nausea and increases appetites. People just don't have anything better to do than cause problems for others it seems these days, and to what benefit?
Well, speaking of something to do, you can indulge yourself in the guilty pleasures of computer gaming, I like crosswords and all, especially if I can get the family involved in helping me, and I go to washington post because they are free and pretty challenging sometimes the link is:
and if you like solitaire, there's like this crazy free solitaire with about 100 different types of solitaire and all the instructions how to play
www.goodsol.com. Its a free trial, but the counter only counts the days you play it so it lasts a long time.
I hope you take it easy, I know its hard in a new house, wanting to get everything set up, but maybe this could be a time for you to work with your daughter to help set things up and explain the history of all the stuff you have and explain why you like things in certain places. I found teaching my son that really helped him organizationally, he hadn't really thought about things like that and he got to know why some of my stupid knicknacks meant so much to me, and to see the things he got me through the years.
I'm sure you know all this, I just worry that you do too much. As for the transplant, you are strong and will make it through. Hopefully it will give you great relief.
Please just don't let anyone make any decisions regarding your life and treatment for you, or let them pressure or guilt trip you. You seem pretty strong, so I imagine you will be fine in this regard. This time is so precious and it's yours to do with what you want, how you want, even if things might seem futile, or to cause you more pain with not much gain, its your decision how much you will put up with.
The docs are always wrong about time, focusing on worst case, and you have the right to decide how much you will stand. My grandmother was guilttripped into quitting all treatment for her inoperable brain cancer, I was so mad because she wanted treatment because she wanted to be there for the birth of her granddaughter who was due in a month and to do some other things and make sure everyone was taken care of.
I got in a very bad fight with her nurse, who kept harping on quality of life and expenses, and I was near pushing to get her fired. It was my grandmother's decision what she wanted to do, what she wanted to put up with, and she had things to do. She took therapy that they insisted would only give her a month and it gave her nearly two years, during which she had a period of unexplained remission and got to know and care for her granddaughter and do special things for her family. I was so happy she fought, followed her heart, and stuck to her guns on things. Had her decision been the other way, I would have fought for her wishes to be followed, because it was her decision.
You sound better, relaxed and mellow, and I hope you are enjoying your family and new house. Please know my thoughts and prayers are with you and your family always and that you are such an inspiration, the way you have handled things so gracefully and with so much class. Wishing you much happiness and peace and fun with your family. ((((hugs))))
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments