Yes, an actual real letter. Looks like they are going to investigate it because they are asking that my daughter and I both sign releases so that they can look into our personal records and see what is going on.
Okay, so now I have my work cut out for me.
Their office wants specific problems and what actions that we want taken, including any letters and documentation. I really don't have letters and documentation because I've mostly made phone calls and had conversations.
John McCain is a potential candidate for the next Presidential election. He has been a great senator for AZ. So, this might be our chance to bring up some of the issues we have discussed here because I certainly am going to cover medical insurance and disability issues in my comments.
Any ideas are welcome.
I also want to send a copy of what I proposed as an amendent to the Constitution. Probably won't get very far. But it's a start.
Also got letter stating the actual requirements by medicare/medicaid for getting power chairs. Even though I'm waiting to pursue that further for myself, I am going to bring it up. I wish I had this in electronic form. The big deal on this one is you cannot need on the basis of getting out of your house. There's all kinds of clauses.
I also got a letter from the Arizona Center for Disability Law stating that someone would be getting in touch with me on that one.
You guys have to help me with all this. I am not very clear-headed because of my medications and being so sick. But here's an opportunity.
Please help me do this for all of us.
I'm going to post this on RA Sushi as well.
Oh, and I think he even might have signed it himself. It doesn't look the printed one. Can you tell I'm excited?YAAAAAAAAAYYYYYY!!!!!!!!!!!!!!!!!!!!! I dont know what to say. If you do make ANY more phone calls, when they reject you, or give you a crap reason for something, tell them you want that in writing! I'm not sure what else...I suck at this stuff...Wonderful! You go girl! By the way we have more in common as I am also 49. Too young for the senior help and too old for the junior help, lol.
Best wishes,
Wooo Hooo!
I guess the "squeaky wheel" gets the power chair!
(PS: I think McCain's sexy. Shh! Don't tell him I said that!)Oh My Gawd, tell me I am
dreaming! This is awesome. Perhaps we will be seeing you on
all the the talk shows with maybe our future president! OMG Deanna,
isn't this just the best? You have made my Christmas the merriest
ever! You can do it Deanna...Go Go Go!
Sending a power hug to you!
Thanks guys. I'm fit to be tied with excitement. So many years of struggle and so many people that I know that are affected by these same issues.
Please pray that I say the right things, that something good comes out of it. There are so many people suffering.
Deanna,
You will do great. Talk from your heart and you will say all the right things. I am soooo excited for you. I wish I was a good letter writer. I haven't been dealing with this for near as long as many others so I don't have the war stories many of you have. I look forward to what you have to say. Keep us informed.
I just want to thank you on behalf of another RA'er! Thanks for not giving up!
Lori
Deanna, you won't believe this...Last night I dreamed that I met you in person at a mutual friend's house. I knew it was you by the things you were talking about. But when I asked, you said "no, it wasn't you, but you knew who I was talking about... that women on the RA forum who had been having so many problems". But I knew...
Anyway, that is wonderful news!! Be sure you document every call, etc with name of person you are speakings to, date and time of call, and general topic of call. Then jot down as much detail as you can, after you hang up. I have steno pads going back years with these kinds of things. I started it in 1975 when I worked for a Tractor dealer and carried it on into our own business. I still do it because Soc Sec. wants dates, etc, of everything, as you know, for disability claims. Just a hint for you. Maybe it will help you out. I hope so.
Any letters you have received from insurance, doctors, social security, could be of help.
Also, keep copies of all letters you write; they'll want those too.
Now, about the power chair. How do you get around your house? Do you use a walker? That's what I do. But would a power chair make it easier for you to get around your house or harder? Just try to think about your average day...If they could just get a chair to you now, any way they can, then maybe work to get the guidelines changed.
That just sucks that you are expected to stay in you home constantly. I consider my scooter a way to get out and about a little bit, on my own.
I'll try to think of anything that might help. You are definitely on the right track. Rest well tonight!
Hugs & Blessings,
Nini
That is great Deanna!
The only advice I'd give you in responding and dealing with his office is try and focus only on your current situation. Try not to get them distracted by various random situations that you feel are unjust. You want them to look into your situation not get bogged down with numerous problems they can't fix right away.
There are many, many issues that are unfair and need fixing; but today....right now you need to deal with your problems at hand. Face those problems, find solutiosn and then take on other issues you feel need addressing once your current situation is under control.
If you come back to them now with other list of things you want them to look into your problems might not get the attention they deserve.
You've waited TOO long to get the help you and your daughter need. Don't do anything to risk that now.
GOOD LUCK!! Sounds like you are definately making steps in the right direction.
Lori, thanks for the support. I'm really going to need it. I'm quite nervous about saying the right things. But this is where my heart lives.
Nina, it is strange that you dreamed about us meeting. Hopefully, one day it will happen. I appreciate the advice. Unfortnately, I have not been with it enough to write down everything and date it. I do have some letters, and I may be able to come up with dates on which I made calls based on my phone records.
I am using a manual chair right now and it is very difficult to maneuver with bad upper body strength, fatigue and anemia. But the doctor wants me to give it a try to avoid a permanent placement in a chair. But still, all the things that I found out about need to be brought to light. What I cannot believe is that getting out of the house is not considered a reason to have a chair. So, if I don't have the strength to stand up using a cane or walker, what am I supposed to do. And, that has been the problem.
Painkillers is the supposed solution. That does not help with fatigue and the morphine is making so out of it that I still cannot get out nor do I feel up to doing anything. I had to give up Christmas decorating and shopping. We are not having a tree and my kids are not hardly going to get anything. They are 22 and 25, but still it sucks.
We are going to try going to a movie tomorrow and having a meal together. At least they are being very understanding about it. It's still hard on them.
Hi Deanna - this would have to be the best Christmas, for you, your children & all of us here who have been with you in your incredible struggle for some sort of dignity in the face of this horrible disease & the adversity that comes with it. The only advice I can think of is to write down details every time something comes to mind - our rheumatoid memories seem to come and go. Try not to be too nervous - remember a politician is a politician - I am so cynical!Deanna
This is wonderful news....my suggestion is that you have a notebook by the phone and write down everything that you hear as soon as you get off the phone....keep a diary of any and all conversations with anyone that has to do with this. Jot down as you remember what conversations you have had up to this point. Good luck with this whole issue......I am praying for you......
Thanks, I am getting told elsewhere that I should mention any other issues but my own. But many of my issues are everybody's issues. I want to say something that cannot be ignored and I find the input of others very helpful.
I think if Senator McCain becomes aware of the problems by helping you, it would make him more aware of the bigger picture as a whole.
If you try to fix the big picture first, you might get lost in the shuffle. Remember, you have to take care of yourself first if you want to be able to help others.
You so badly need help right now, please don't mention the other issues until you get yours solved. Working w/him on your problems you might be able to develop a relationship that could help you negotiate other issues in the future.
Please just think about it won't you?
I wish all the best for you and your son and daughter, and hope you will be able to have a good holiday spending time with each other.
All the best,
Crispy
Deanna, I'm soooo happy for you and like the others said, take care of yourself first!! When calling, you can record the call. Just make sure that you inform them that they may be recorded for lack of memory on your part.
Hopefully, this will start to open some doors for the rest of us. It's not right to let us drop through the crackes in the system. Several of us need help but we can't get it as we don't qualify. I get so mad as I'm not asking for a handout but a handup.
Again, Deanna, you are one persistant person and it's nice to see it pay off. You go girl!!!!!!!!
I want to include common issues with my own issues as the stepping off point He has asked for what I want and this my opportunity to specify solutions which I intend to. My daughter and I talked about it quite a bit today. She feels the same way as me. When she was living in the residential home, their was a 16-year old girl that was raped because of a lack of supervision and a 17-year old boy died mysteriously of a heart attack from a mistake in medications. People are dying from the abuses in the system. Plus, because they are not helping me with my daughter's care, my health has been damaged even more. In fact, I got to thinking about it today. Because of their inaction, their lack of meeting their legal responsibility, I might lose my LTD because I had to take off work up to 5 times a week in dealing with issues. The stress of all this has done significant damage. But this is happening every day and I do wish that others would speak up about issues that they feel are important on healthcare, the medical system, insurance and disability. I want to mention first those things that I have experienced myself. But my voice does not have to end there. I do know how to present things in a clear, succint manner. I was a marketing and techinical writer for years doing everything from ad copy, to highly technical documentation to corporate presentations and stockholder information. This is the background that I bring to this problem besides having lived through an incredible amount of stuff. I know you might want to protect me. But it is the silence that is killing me. It is the unawareness, the ignorance, the apathy of those in the system that is hurting all of us. Those of you who are stil working are probably much like I was, terrified of losing not only your job but your entire career. My problem already is your problem if you just sit and think about it. I burn with a passion regarding this. And, with the distressing news of the doctors, I don't know how long I will be able to communicate or maybe even live. My vision is going. I have aplastic anemia and a really compromised immune system. I don't know if the current treatment will work or that I might have to have a bone marrow transplant. Or, just a complication from and infection might do me in. Of course, those are grim thoughts and I try not to spend too much time on them. Yet, they are shadows on my mind. This is my way of fighting back against this disease, to speak up because it seems the world is silent to our problems. And, besides, I don't know anyone who isn't either directly affected by the problems in our health care system or has a family member that is. I have learned that you have to fill each day up because you might not get enough tomorrows. That is just the way life is. I am looking for suggestions on ways we could solve some of these problems. They asked for what I want them to do about it, to be specific and that is what I intend to do. I am hoping that you will help me do that. What if I was actually given this man's ear, this golden opportunity? Should I not speak up? It's not just about me. It's about my friends here, about my adopted niece with fetal alchohol syndrome, my ex-boyfriend who is blind, my friend with cerebral palsy, my aging parents, my uncle who fought in five wars and barely survives, my daughter.... the list goes on. I can't just do it for me. Yes, I am desperate for help. But I wouldn't be if they would fix some of the problems. For instance, why must someone wait years for SS. It's not tragic enough to lose your ability to work, but then you have to prove over and again that you can't work. We are punishing thousands of people for the deceptive acts of just a few people. And if they would provide medical coverage for all citizens, eliminate pre-existing clauses, a lot of us would not even be forced into going on Social Security. One of the biggest reasons to go on Social Security is to get medical help. Please think about it. Please. What would you change if you could? You can count me in to help..keep in mind my computer has been on the yuck lately and I cannot always get online, but I am willing to help out in this area. I am a bit rusty on the ADA laws of recent and I do realize they have changed somewhat. Your voice has a chance to be heard, this is very fortunate. I will suggest that you keep focused on your particular problem and complaints, and quite frankly charges can be filed against the institution if you can find someone to do so. But I do agree that this is an opportunity to inform someone that has the power and the ability to do something about it. There are certainly several issues that need to be addressed and you have someone willing to help .BIG CONGRATS....now it is time for the tough work ahead but it will be well worth it! Here is my email addy in the event my computer decides to crash or not go online......I can use another computer to go online and read my email. jode Deanna, I'm with you on this. I get the need - your need and the global need - for this to be about the bigger issue of ...what would you call it, disability advocacy? I've been away for the holidays and so am not caught up with everyone's doings, but I PMed you earlier and your inbox was full. If you want to chat, please PM me again. RKGal RKGal, I emptied my PM box. I haven't been able to sit and write anything yet. They put me on that morphine which I hate and won't take again. But it messes with your ability to form coherent sentences. Hopefully, I'll be able to work on it some this weekend. I want to hit while the pan is hot and I have more to add to the issues. jode, thanks for your help. I might have to take you up on that. I don't see how this has to end with me. I might have to address my daughter's issues first. But this is not the only leader that needs to know the dilemnas that we face. I have still not heard anything from the governor. This sounds like one of her issues. Maybe they are all on Christmas vacation. Wish I could take a vacation from RA.
Copyright ArthritisInsight.com