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@ess77
Hi Elizabeth, So sorry for all you and your son are going through. Don't give up the fight! I am currently on 14 of Pred daily, but I divide it in am and pm doses to help keep my asthma more steady during the day/night. Dupixent and my nebulizers help. Something that can help with the DM is that you keep yourself hydrated well (even though it really is difficult to get to the bathroom). The hydration (as long as it is not contraindicated with limiting fluids due to other things), is essential to help the insulin get to the cells to manage blood sugar. Saying watch diet, carbs is necessary - but people have to live with DM. I hate when people assume that it is all diet related - which it is not. There are so many factors. Hope you are wrapping your legs or using support hose - to prevent blood clots. They also give support to the legs as well (I do this everyday - though it is a pain, and gets very hot at times. Deli food is delicious (I love corned beef), but dangerous from the high sodium, which depletes the fluids you have and leads to retention. (I also have other health issues.) Keep up the fight - even though it is difficult. When I was very sick 2 years ago, I was permitted to work from home and have someone do my daily classes as I worked behind them from home. Grateful and blessed that I improved and was able to go back to work, and also have a wonderful husband/family who are very supportive and also works. It is not easy to manage chronic illness and still maintain life. Good luck to you and your son! Sending prayers and blessings. Pam
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@pht1123 and all... Thanks so much, Pam. I need to hear the support. I am very isolated, basically live in my bedroom and upstairs, made a small bedroom my little kitchen to have an apartment uptairs and avoid the stairs... downstairs bedroom. I actually enjoy it, sort of...do have a huge live oak tree outside my large window and see the beauty and life in the tree. I stay very active all day on my laptop, when able, taking care of medications, medical appointments and researching for hours to find new or better treatments for my son. Order groceries for delivery, and everything else.
It takes all my energy to do the daily things to keep going... feed cat, clean litter, wash used dishes in 2nd bathroom sink, normal paperwork and medical. I'm now handling my son's mail and bills, etc. I am his assistant! I do enjoy that kind o thing and love researching things, learning and digging to find answers. As long as there's no deadline!!!
I have a stair chair I bought from the family of a 92 year old neighbor and friend after a hospital stay. Caught Covid in the hospital, was discharged and died! Horrid! The stair chair is fairly new, a good one, slightly damaged when my handyman moved it poorly. Should have called the company to transfer and install. It's been sitting in my 2nd bedroom used for storage until I re-floored the stairs. Now done and I'm calling Monday to have the company fellow check it out and give me an estimate for installing it for me. This is exciting! Actually, the first bit of hope for getting that part of my life moving again, enjoying the downstairs, the bird feeders, etc. If I can handle keeping them clean and filled, I have a nice feathered family of friends who are regular visitors. Need to get that back in my life... pure joy for me.
All that depends on how infection free I can be this year. God and I are working hard on that one, too. Sepsis 3X last year, several ER visits, hospital stays, 2 long rehab stays that almost killed me! Not happening again!!!!
Thanks again, Pam. Good getting to know you. You have a great support system and are living a good life, while dealing with the medical junk some of us face for whatever reasons. A lot of my issues through the years were caused by medication side effects, multiple meds, some genetics-pernicious anemia, and such...but, when I learned to stop fighting to control what was out of my control, for sure, to accept what is but be a strong advocate and insist on the best care available, I began to reduce the fight/flight merry-go-round and stress levels reduced. Helping my body deal with the issues it was facing.
If only I could get good help for my son... have his 'electrocutions' throughout his body controlled or stopped!!!! Relieve his horrid pain, have him help other than from me... Working on that now. Finally, I have a doctor who is helping him and is a facilitator, tapping into available resources for disabled on all levels. I tried, but wasn't successful. Partially due to my son's fierce independence refusal to be 'disabled'. That's changed now.
So, there you go. And, no husband or family, etc. You are indeed blessed! Elizabeth