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Update to help with treatment

349 Views 8 Replies 8 Participants Last post by  KarolH
I had my appeal hearing today and they did a continance. So we play the waiting game again and get more doctor information sent in. The supervisor in my local office of the case workers gave me a hug today and said she is so sorry that they are making me go through all of this. She was glad that I did not let them start the whole thing over again.

I also went and picked up my new cpap machine today and it is great to sleep well again. It seems that my machine was putting out 4lbs of pressure and my setting is 9, so he said that was a big part of my not sleeping, not sleeping well, and only a part of some of the fatigue I was feeling.

All I can say is keep talking until someone hears you wheather it be a doctor, a social worker, or anyone else. I know it can be hard to do and much easier to give up but that might be the problem. Tell people or groups of people no long enough and they go away. Being sick is not an easy road but until you have walked the road you can not begin to understand what it is like to be in our shoes (so to speak).

Well that is my update for now and just wait for a new hearing date for the state medical card. They did try and tell me again that lupus can be cured and this time my reply was please let me know what the cure is I am now on a website for lupus that would love the cure along with thousands of other people that are not on the site. That put an end to the cure :mad: 8) I kept my cool this time and continued with the hearing that they did not want to be at.
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Hi Tammy,
I am appealing mine also. Spoke with an attorney today. He thinks he can get my ssi for me. I don't know how they turn us down with these diseases we have. I wish I did feel well enough to work, but, I don't. Good luck with yours,
Mary Ann
you know that's what i hate about illinois! i was born and raised there. when my symptoms started to get worse, i almost had to drop out of college. i was working 3 jobs just trying to pay my bills and putting food on my plate. every month, i got more and more medical bills because i didn't have health insurance. so i decided to apply for food stamps and medicaid. i was denied and i called them back. when i called them back, they (honestly, i'm not making this up or trying to offend anyone) said that if i was black, i'd have no problem getting the help i needed! needless to say i was infuriated! why should it matter what your racial background is, when you need state help, you need state help. now they're saying there's a cure for lupus! hahaha! thats horrible. seriously, if you live in central illinois, you could call news channel 20 and have them do an investigation. it just sickens me to the core! i really hope you get the help that you need!
Hi Tammy

Sorry to hear of your plight and i hope you get sorted,it is sad that we have to fight for everything in this world.
Best of luck Sandy
Tammy, just hang in there and don't give up! I'm so proud of your dedication to your cause and your knowledge of this horrible affliction. To everyone out there stick with your cause. I won my disability after 7 years. And yesterday I found a great dr. There is hope and help out there and I thank everyone who has stood by me and showed me the direction to take! I love this site and all the caring , loving, people. Thank-you and God bless!
Hi Tammy,

You might want to ask your doctor to write a letter on your behalf. In the letter he could mention there is no cure for Lupus. It wouldn't hurt to have print outs from credible sights stating there is no cure to take to your hearing also.

I hope this all gets settled soon.

Take care,
Thanks To all that Posted,
I wanted to keep everyone that has been having problems getting help know it is out there and thank everyone for listening. I have had 2 doctors letters and they still don't understand.
Dear Tammy, all the Best. I will continue to hope for you with your Employment struggles.
x Lola

Stand tall and fight the fight. Your right, someone will eventually hear you. I am so sorry that your dealing with this but I am confident in the end things will work in your favor.

I am happy the CPAP machine is working for you. I had one and the air was set to titrate at 15 and still I did not get relief. I eventually sent it back to the company who brought it out to me. Happy it is helping you.:wink2::wink2::wink2:
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