Ok, I'm back. I am sorry for long delay of blogging. I have been really down and basically bedridden with Heidi taking care of me. I am just going to ramble and try to catch you up up.
I ,still not able to take any food or liquids by mouth. We tried all the different formula of tube feeding by doctors through my feeding tube and they did not agree with me. Caused more mucus build up and made me sick. So, we did our own thing and started jucing organic veggies and putting them in my tube. I am getting everything from, carrots, brochilli, beets, green beans, kale, spinach, celery, peppers, cabbage, cucumber, tomato, romaine lettuce. Heidi also adds soy protein and we are trying some others. We are staying away from cow's milk. We ran all this by two doctors and they were in agreement. It is alot of work for Heidi but she does not mind.
I only weigh 139 lbs now. In January, when we started treatment I weighed 196. My energy level today is about 20% . It has been lower. We got the pain under control finally by seeing a pain management doctor. I am on a regiment of Methadone 3 times per day. I am also take Nuerontin 3 times per day. So pain is no longer the biggest problem. The biggest problems now is the mucous production and interfering with my breathing. No meds for this as anything would dry out my mouth more. I have to carry water bottle and spit cup now to moisten my mouth regularly. The other problem is nutrition. All the muscles in my legs and arms have broken down from lack of nutrition and this also caused me severe leg pain. My legs and feet are currently swollen. I have some Ted Hose to wear on them.
I had to cut off visitors for a while cause I could not get enough rest. However, now I see visitors. I appreciate all the cards, txt, emails, etc.!
The other self treatment that helps me is what I call my Coke Flush. I force a drink of coke down my throat and it binds with the mucous and then I throw it it up. I clears the mucous out for couple hours. It sounds bad but it is somewhat refreshing as I get some ice cold liquid in there when i am so dry. going through a lot of coke.
If you are trying to bring something for me, bring organic veggies, coke or 7 Up.
My goal is keep veggie feeding and get strength up until I can eat again. The doctors cannot tell me when that will be or what is going on right now. Hope this info helps you. I am currently, just staying home in bedroom and Heidi is assisting me when I need it. I love you all!