[Annie59]

Just talked to my daughter. Hard talk. When we got into it hard she said she cant take this another 3mo or 6mo. Not knowing and me being this sick. then what came up was how I do this dance of trying to not get bad enough to end up needing to go to ER or need my lousy neuro at the university who she doesnt like any more than I do. She said you may well need to let that happen so they see. You need to get worse. To have a week when you do it all and end up in ER, in the hosp so they see.

I started to cry. I told her that the hosp MG crisis in 08 left me with such a loss of strength that still hasnt been recovered. And the one in March took my vision and now my ability to talk hardly at all. She said it may be painful physically and mentally but will have to happen so they get it. I said pain isnt the issue as much as terrified. I told her I dont even feel pain normally anymore. I dont feel normally around my oown grandkids after the long spell of physical pain and mistreatment by medical people. She said use that as your reason to do this.

I told her this is exactly what my best friend and confidant has said in years past and again recently. Tho she gets my fear and I dont think my duaghter does.

Last nite I cried after suddenly remembering so clearly this amazing wook sculpture I did back in 95. I hadnt thoguth of any of my art for sometime. But I am sure my youngest daughters comment the day she took me too the ENT is what sparked this. She said mom I'd much rather see you buying art supplies and doing your art than any of this. I am so far removed from who I used to be. My life, my face, my body. I dont recognize myself anymore.

Help..........
Annie59

[Stellatum]

Oh, Annie, I don't know how you've hung in this long--I know you and your daughter both must be completely at the end of your ropes. You're in desperate need of some sort of breakthrough. I always hesitate to tell people I'm praying for them, because I know different people believe different things, but at this point there's not much else to say. Please keep in touch and let us know how you're doing.

Abby

[Annie59]

Been thinking of my fear today. Moving forward will be easier if I can get a handle on it. I am honestly a VERY strong resilient person tho dont feel it these days as much. I know that my vit D deficiency affects my emotions alot. It can really amp up my emotions. I am making my tanning a priority.

The other thing that amps up my fear is the breathing component. While I have the support of my good, good neuro I havent really tested that support in a urgent situation. I was in the hosp prior to my SFEMG to be safe going off the mestinon but when my breathing got worse during the nite and was the next day I asked for him but was refused by the neuro staff and with a 'knowing smile' told by the student neuro that the nurse HAD chcked me during the nite and I was breathing. Gee so now we leave my truth up to a nurse. This was at the university where he is, where my neuro is.

My pulmo asked me on the phone in October if I trusted that he would be there. I said I had more trust in getting help that I used to. He guaranteed me he'd be there no matter what and gave me his direct phone number. If I can just get the chemical change under control that low vit D/elevated parathyroid puts me in..........I can get thru a risk like pushing myself to a breaking point.

Annie59

[AnnieB3]

Annie, Have you had your thyroid tested lately? B12 levels? Don't blame it all on the Vit. D. deficiency.

At some point, you may have to give in and go somewhere else for help. It sure would be a heck of a lot better than what is going on now. See if your primary or pulmonary doc can refer you to the University of Kansas Medical Center.

http://www2.kumc.edu/neurology/barohn.html

You would not be treated well at Mayo. Kansas is not that far away. Maybe when the weather gets a bit better. You need someone to fully evaluate you, from head to toe, not only in regards to MG. What you need is a full blown physical.

I'm sorry you are feeling so down. So many of us know how hard it is to feel sick and not have answers. But you can't give up hope, ok? Rethink your situation and get someone who has been PROVEN to be kind to help you.

Annie