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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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04-02-2023, 12:01 PM | #1 | ||
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As an update on new helper she didn’t do what I was hoping for or my daughter hoped. She was supposed to at least help me get moved to a place with more support services. That didn’t happen and I think she may have been partially responsible for how much this place did NOT know about my health status. I hoped perhaps she would help me get back to Mayo Clinic where things are so much kinder for me. Just recently My old Health caseworker sent me a message. It was a MUCH needed surprise. She took me to ER on March 19 th. I was in bad bad shape. My Vitamin D deficiency is raging out of Control cause of Winter and living at this facility. I so so Need SUN!!! I started meal in my room this week cause too weak to get to dining room. Sculptor 44
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"Thanks for this!" says: | Lara (04-03-2023) |
04-03-2023, 09:41 PM | #2 | ||
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Legendary
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Good to see you posting again.
I'm sorry to read that your new helper didn't turn out to be so great. I wonder if those light therapy lamps help? Hopefully you can get out in the light soon. It's been a long winter over that side of the world by the sound of it. I have to be really careful going in the sun and my vitamin D is low due to having Parathyroid problems so I have to take the vitD in tablets without calcium. Sometimes I think they make me feel worse so I take a break from them for a while and re-start later. take care, Lara |
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07-28-2023, 10:07 PM | #3 | ||
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Hi. I really miss posting and keeping up with you all regularly or at least more. On the Helper subject At this point in my new home in Assisted Living things have improved around support folks. Just recently my hands have become weaker and early before I get a meal and a couple doses of Mestinon in me I was unable to open my special bottle water. I couldn’t break the seal. So I called the staff for a helper. We are still having money problems and I have managed to be more involved. I am trying to discover if a 2 month deposit was necessary or if we can get half back now that they know me better. The money issues has me concerned about transportation to doc appointments and even just my things that help me feel better like CBD Oil and my special Penta water. My breathing and chest have been a much bigger problem. Writing distracts me from the discomfort and worries. Sculptor 44
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"Thanks for this!" says: | Lara (07-29-2023) |
11-29-2023, 11:32 AM | #4 | ||
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Just an update here as Helpers are so important AND harder to find. In this recent MG attack that sent me to ER by Ambulance per my Neurology offices order has given me much information on helpers and medical care. The Nurse at my facility was crucial in helping me that day. She came when I called and recognized I could hardly speak AND she knew about what 9 on a Single Breath count means She made a call to Neurologist cause I couldn’t say much but help in my first call. She alerted a veteran Nurse at ER who was great tho the doctor was about worse I have ever had. I tried to sign up for the Geriatric PA nursing service who comes here as a doctor. They said they can’t take me cause my case is too complex and had said I need a higher level of care which is to these folks you need nursing home. I said no!! I just need more aggressive treatment.!! Sculptor 44
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