[Annie59]

What a day. My whole body is alot worse not just breathing as I had spoke of earlier this week. Today I was really surprised to not even get the usual lift from my IV fluids. It is usually very big especially for my breathing. Not today. My thighs have no strength. Getting up from a seated position I feel the nothing and have to use my arms to push me. I forgot to take my note book and use it to talk at the hosp so I ended up in this worse place. I think I mentioned that I get these walls, stiff walls when I push to talk when I know my breathing is alot worse.

Also when my daughter and I talked she said the landlord refused to let me have another 30 days to move when she asiked. What cold-blooded jerks. Also we realized my not so great housing paper work worker went ahead and did the calclutions with what she had with out me going back to my docs or Jen to confirm all was correct. This meant she had to call them and or email them and tell them to ignor me and send her what they had as I had called them all and said I was going to call them and go over the list. This totally makes me angry espec since my daughter in all respect told her why we needed extra time alot of the reason being they changed this year and expected me to handle both inspection AND the paperwork at the same time. This has never happened before. I was about done with the paperwork part and got the notification I had to have the other done (or visia versa, cant remember.) Since they are a HUD agency they are supposed to respsond to requests for accomodations for handicap people. I guess I am gonna have to make a formal request to the director so this doesnt happen again nect year.

Gotta go. The goop in dry eyes is makin it too hard to see screan.

Annie59

[Annie59]

I just remembered that when they took my oxygen saturation at hosp it was 94% I know this is not dire but it is the lowest I have seen it since the hosp in 08 for the crisis. I didnt think to look and see if the test contrast dye could mess with my MG. I used to be so good about that. I may have some of that going on.

I managed to take a larger dose of mestinon and have it not mess with my bowels. I need to get more in me now. I think I need to try ice packs.

I think I should see my neuro this week.

Thanks all for listening. Its been a hard week and a day I'd rather have not gone out. And I got the nurse that is really the only one who doesnt put IV needles in well. Ow.

Annie59

[Imatthebeach]

Oh Annie,I am so sorry, really, it is painful to hear what you are going thru. I do not understand why there is no one to take your case and help. I know I can call my case manager and they would find me hellp. I wish there were a way. Do you have a careprovider? If you do, call your case manager and ask who can come and help you. They know of all of the agencies. Sorry I do not have any wonderful suggestions.
I hope you get your rest. All the stress alone, holding the muscles tight, that is enough for anyone to be going down hill.
Maybe the MD assocation there, or even the MS society there know of some help?
well, hang in there. I hope things end up going great.

[Annie59]

I am glad you have a good case manager. Mine does the minimum. This causes some of these issues to be worse. She talked to the county aide agency boss when she got me and seems to have a sour opinoin of me. I dont get that she takes my case seriously. That agency that regulates this said when I told them of over all issues and her not pitching that I need a new caseworker. She could have helped get my shower aid in place and that has been going on for months and I had to go for fluids again smelling bad. Wiht all this moving going on it is not possible to take her on. I , hopefully askde my daughter to ask her as someone said if she could help with moving issues in any way. She flat told my daughter no. She doesnt think I have MG based on the old agency. I am tempted to have this last doc send his notes to her.

I have tried to ask for help from her many times in various circomstances. She didnt do anything till I said I had talked to the governing body at the state level. Then she hopped to and offered to change my the agncy that isnt giving me the shower and sent paper work that she should have sent to me last October with a sorry note. But since then silence.

Annie59

Originally Posted by Imatthebeach

Oh Annie,I am so sorry, really, it is painful to hear what you are going thru. I do not understand why there is no one to take your case and help. I know I can call my case manager and they would find me hellp. I wish there were a way. Do you have a careprovider? If you do, call your case manager and ask who can come and help you. They know of all of the agencies. Sorry I do not have any wonderful suggestions.
I hope you get your rest. All the stress alone, holding the muscles tight, that is enough for anyone to be going down hill.
Maybe the MD assocation there, or even the MS society there know of some help?
well, hang in there. I hope things end up going great.

[Imatthebeach]

If there is anyway to get another case manager, I sure would! Bad enough to have a doctor have a neg attitude, but this person is supposed to be somewhat of an advocate for you.
I would def. have your case file updated with the correct diagnoses. It is not her concern what it is anyway, that does not change her position to assist you with your needs. Mine is very sweet, informative and helpful. I know I can call with any question. They let me know the phone number of the resource I am needing.
I was put on disability for psyc/conversion until a year ago. That never effected the care I was given by the Assisted Living. They treat you by symptoms. Each symptom has a point which adds up to your level of care. Yep, I sure would get someone who will be kind and helpful and do their job.

Well, I sure hope you get into a nice place, fast. It would be great if your grandkids could come to visit too!