If you are wondering many caseworkers I have, the answer is two and a half. Okay three... really. Alex isn't a caseworker but he legally has what I call pow-wah. He's my personal care attendant. He can cause a lot of trouble for me ...like try to put me in a nursing home. If he even tried, OOOooo, I'd take his remote control away from him! No more Burn Notice!
I joke that Alex is the "half" as he is responsible for my well-being and must document every single thing I do or don't do - (quit tattling on me!) and she in turns reports everything to Medicaid. Are you following all this? That's two people plus Alex.
Last time Medicaid asked me the "how are you" question, I got in trouble for my nice reply. HAHA! It wasn't that kind of email. They don't email "how are you" questions even if it's phrased that way.
Don't be fooled.
It was a "Tell me you are still sick" email but I didn't know that.
In other words, tell me you still have MS, tell me you are still suffering, tell me you are MS'ing. I simply said "Hi ****, I'm fine! Nice to hear from ya! Blah, blah, blah!"
This time I asked Alex to ask my caseworker what to say. "Tell the truth." she said.
What is the truth? "The truth is I still have MS and it is incurable." HAHAHAHA.
No Sherry, tell her... "I'm progressing, sometimes I have trouble with the steps."
Ok fine, whatever. I love being a government puppet.
I was approved for Medicaid because I had MS and am low-income. It's progressive and incurable. (both the disease and income) If you ask me how I'm doing 3 years later, what do you want me to say???
It makes me feel bad to say stuff like that to "MY" caseworker. I don't even want to have a caseworker. We knowwwwww about MS and what it does.
Or do we?
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I am using a different webcam for my youtube videos. It's frustrating...I can go at full speed with my signs but I can't seem to turn off autofocus. Baby steps... kinda like the email with Medicaid...
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10 comments:
Putting something in writing for the benefit of a bureaucracy always makes me all tense.
I am both care coordinator and ms sufferer. I do have to explain to coworkers about things like fatigue, the wall, the emotional crapola, spasms, etc. The more invisible stuff that sucks so bad. We have to document for the auditors, legal aid and our licenses, not necessarily in that order. Great post. @ work I try to start with I hope all is well, meaning, I do not expect better but hope things have not become worse. Then, we can leave services The Same (the Same as before is a valid answer, also same or better, same or worse)Then I discuss if increase is needed. I hope for a better system. Best wishes in yours! mary
ooohh... like you an Travelogue, I have to write down 'this and that' for the government... fortunately, the truth is enough and I don't have to worry about fudging anything... just a freakin' pain to go through something that doesn't really change from year to year toward getting better, you know..?
I am lucky and don't have these questions to answer. And besides, MS being what it is I can be fine this morning and not this afternoon. Or vice versa. Sigh.
Never tell the government you are find. They don't like to hear that.
Too often it is automatic to say "fine" when one is not. Take a moment to think about the context - is it a social question or does the person asking need the facts. I find this with my elderly, frail parent and also with my friends who have chronic pain issues. They don't want to complain. But they aren't complaining if the person asking needs the facts!
I could write a book on how to talk to any government worker about your condition. I told my sister when she went to the doctor to have her acute diabetes due to removal of pancreas documented to qualify for disability, for heaven's sakes don't laugh and smile like you usually do, people will think you are fine. We sisters have defensive laughing habits to make ourselves feel better when the problems threaten to overwhelm. I said look and act like you are sick! Even then she had to get a lawyer! My sister is the most cheerful actute diabetic I have ever seen! Drug addicts who have ruined their health really know how to make a case, they are used to it! If you say you can't walk in my case, you better look like you can't walk. Act if necessary when you really can't! So I am glad you learned a few ropes which will just make life on disability easier. I also never involve case workers unless it is absolutely necessary. Stay invisible if you think they can hurt you! And so on. Looking forward to your next videos. Make them while Youtube still exists! Great for the common people to have a voice and the disabled. My video of a woman's story in here who has a permanent trake has just gone to 1,000 hits. This has been a highlight in her life. If you are articulate keep those videos coming too! Sign and tawk!
Thomas, yes. Tense is the word that comes to mind. I feel like a pawn in the game. The more hours they "give me" the more I worry they can't be "given back".
Mary, there is only so much a "personal care attendant" can do in this tiny pad of ours. I guess each State decides what they can and cannot do. In my State, they pretty much do the job of a "Merry Maid" plus any medical issues you may have. And they grocery shop, cook, pick up scripts, etc... I wouldn't let previous "caretakers" have access to my money - no way!
Santa Mark, my annual renewal is coming up in May/June and the last two renewals did not go smoothly due to computer errors. I think this year it will go okay (HA - I've jinxed myself) because the "bug" has supposedly been removed. We'll see.
Elephant, yeah. I usually feel okay in the mornings but by noon I'm in pajamas LOL. =) Maybe I should send the Medicaid email in the afternoon. Heh.
Lou, I'm sending her a rockin' email telling her everything she wants to know except she isn't going to hear a word about poop. We all know the older you get, the more about poop they talk about! =p (well I could tell her the government is full of crap...)
Jenny, that's the thing. She sent me a one line email. "How are you?" LOL. It's hard to put context...in an email like that. I always laugh at my neuro - he comes booming in with a big smile, (he's a teddy bear) and says "How are you doing???" and I always say "I'm fine - how are YOU doing" and he does share something personal....like his gorilla work or something about his daughter. I like that! =) Then we get to "work".
Gerry, we shouldn't have to "act like we're sick" if we're sick. We ARE sick. Once diagnosed...they should accept that we are not going to be laying in a bed when they visit (unless we're bedridden, lol) wearing hospital gowns. I still walk. Yes I have trouble with steps BUT? Do I have to discuss every little thing with them? She gets all the medical bills so it's not like she is unaware of everything that's going on. LOL. But we are entitled to a sense of humor too, aren't we?
Sign and tawk. I will give it a shot.
Alex helped me figure out a "government sounding email". I haven't click "send" yet.
I'm too embarrassed which is a contradiction when you're a blogger. I can't explain it.
Remember I'm just FINE=fucked up, insecure, neurotic and emotional. That always makes me smile. I don't say that I'm FINE anymore, but I am okay at times.
My neuro was a jerk, but great at filling out forms and she really was a downer so she always said I was headed down down down.
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