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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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08-03-2021, 08:37 PM
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This is some relief to walk better and thank Heaven breath better enough to get a decent nites sleep. But the battlefield of a monthly trip to ER into unknown group of staff to end up with a Solumedrol shot needs to change. This last one really hurt me physically and mentally.. I even cocooned in bed a bit this afternoon to comfort myself. To heal. There was a complete disregard for what the constant talking does to me. This is my 2nd day of silence to try to help my chest, my breathing and my voice. And then there was the X-ray where rather than bring to me they took me in wheelchair and wanted me in a handy dandy standing chair. But similar to another situation 2 women positioned me sticking front of platform under my feet and they said now just grab this bar and pull. Now I know my body and I even get the engineering problems in how this was set up and so so want to fix it it. All I could do was say without hydraulics it could not happen. These arms don’t lift much and sure not me. I said I just needed the inertia to rise but they were puzzled and worried about getting hurt so I said time to get my daughter. All this sure. Cost me work in my chest I sure sure needed to not spend. I am back with my former GP who prescribes my pain meds but is traditionally limited in other doctoring.. She can be wildly unsupportive. I hope that didn’t affect ER staff. I honestly am not sure what to do next. There is a big difference between what I am able to do and what I need to do. Even back when I went to Mayo a 2nd time I made changes to their schedule for me to doable pieces.And I stopped in 2017 when I couldn’t do more trips. But the neuro then was kinda failing me too. I had a very supportive GP back then. Not now. Thank you all for listening. Sculptor 44
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08-04-2021, 09:55 AM
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I do need to work on this transfer and or lifting issue. The last Time it came it up in a really huge bad way I actually had to leave the hospital I was in because they were so out of wack with my capabilities. My abilities rise and fall with what medication is in me which I try to understand confuses people at best but can cause anger and alienation rather than working with me on the issue. This is why I have worked hard to stay out of hospital especially with Covid blocking my daughter from being with me there. 2 years ago she spent 5 days by my side in hospital so I would get help I needed. Get to bathroom when needed and in a way that worked. At times it was my daughter plus a nurse the first days cause I was in such bad shape. On Sunday when I said I could not pull myself up to standing they tried to figure out what to do and brought up the lifting belt at which I pushed away the device and said it was time to go get my daughter. This staff didn’t understand I am not dead weight it is my unique issue of how to overcome the weakness in my thighs and across my hips. It is the rising. My daughter has never gotten injured helping me up out of car or a low chair. Sculptor 44
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| "Thanks for this!" says: | Lara (08-04-2021) |
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08-04-2021, 03:21 PM
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Legendary
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I just spoke with my daughter who works in Imaging and she says they were "lazy" to make you get out of the wheelchair. She said they took chest x-rays of someone in a wheelchair yesterday and they did it just fine with the board behind the back.
It's an emergency room setting. They'd be dealing with actually immobile patients all day every day. Some imaging places will have the standing x-ray tables. If you were in bed in the first place they could have slid you across on to it. The x-rays go through the radiolucent material. They didn't get you in a bed when you went to the ER? Hospitals have portable machines. They should have used one especially in ER. Imaging staff and nurses these days learn very differently from 40 or so years ago which is better for them of course. We used to lift very heavy weights but they're not allowed now. My daughter is a kind soul and always tying to help her patients. She is "encouraged"/taught not to lift very much at all. I don't know what the answer is really. I know there have been times I had difficulty getting up off the scanner after long proceedures but I had to do it with no help part from an arm. Sorry your daughter can't go with you. That makes it extra hard. If you think it's a communication thing then perhaps you should get together and make a print out of these types of issues so that you can give it to the staff in future and can conserve some energy by not having to explain. Last edited by Lara; 08-04-2021 at 04:52 PM. |
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08-04-2021, 03:56 PM
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Legendary
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P.S. When she said "lazy", she meant in a problem solving way, not meaning physically lazy.
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08-05-2021, 05:55 PM
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Lara's idea of a print out that you can show /give to them sounds like a good idea.
Something brief listing the main problems of speaking & exertion..and how it affects you. A longer list can be made for the Drs, that covers more of the ongoing issues.. It is frustrating to have to repeat things every time to nurses and then the drs at every visit anyway.. Do you have a My Chart or similar type of thing thru your health care? It can be very handy.. Most have a communication option so you can send a message to the drs /staff. Sometimes it is hard to find the message part, probably to avoid too much of drs time spent on messaging..
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Search NT - . Last edited by Jomar; 08-07-2021 at 04:08 PM. |
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| "Thanks for this!" says: | Lara (08-07-2021) |
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08-07-2021, 09:13 AM
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My vision worse cause I am having dehydration issues which leaves me with not just Myasthenia eyes but also goopy eyes from my dry eyes Sicca Syndrome. So I read some of response and will get through all as day goes on. I was not in the bed this time. My chest and breathing are deteriorating and I pressed to not get into bed and stay in wheelchair when first there. In part I needed to rest from higher activity but also explained that when my legs are up in bed my breathing changes. And at that moment I really needed the advantage of my legs down. Previously they always did my X-rays like you said in the bed. I didn’t think they would do an X-ray cause my new home nurse got angry about how many I have had. But when they insisted and had a trainee person to help I made them pause and let me educate them about what I know about my chest. I said I got blow back from new nurse who said last X-ray was deemed normal so I told them that is impossible and here is what goes on and what the new Mayo Pulmonologist says. The technicians seemed receptive and positive so I think it worked to get my truth into the system. Sculptor 44
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