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I am so, so sorry that you are going through this. I cannot imagine how horrible this is for you. I only wish I had better words of comfort and advice, but I at least wanted to let you know I really care and am pulling for you.
I know your insurance and financial situation is really bad right now (this is just inexcusable on their parts), but the only thing I can think of is going to a “one stop shop” like the Mayo Clinic, where you basically don’t leave until they figure out what’s wrong. As you know, this is the place to get tested for all of those really rare diseases. This is literally your life you are fighting for, and it really sounds like you are at the point where you have to try everything right now, no matter what it costs. I hope you don’t feel I am being inappropriate for saying this.
I do understand the insurance mess has to be addressed asap, especially if you are to move forward with necessary testing and treatment. Is there someone in your church or greater community that can advocate for you and take some of the burden off of you and your husband? I don’t know where you live, but if your community understands the situation you are in, I am guessing you would have many people willing to help you, even if it is just by flooding your legislators with calls and letters on your behalf. Maybe someone can even organize a fundraiser to help you out with some of the immediate costs?
Hang in there Michelle…hour by hour, or minute by minute if you have to. Please let me know if I can help you in any way…my email is in my profile.
I'm so very sorry you're in such an awful situation! The only help I can offer is this:
indeed, write to your state and federal elected officials -- congressman, senator. You (or your husband) can find their names and addresses on line. Go to Google (or another search engine) and enter the name of your state, and the words senate and congress, like this: Wisconsin + senate and congress and links to their offices should appear.
No, they don't know you personally..but they ARE "your" elected officials, you are their constituents, and they do indeed intervene on behalf of their constituents...you. Often a letter from a congressman or senator will shake loose all sorts of things that an individual can't access on their own. Expect that one of their representatives will call you back, and want more information, perhaps even access to your medical records.
And of course appeal any denials from your insurance company. Each company has a specific procedure in place for doing that, and many of them have short times set up for you to do that, so check that right away (or have your husband check). Also be sure to tell your doctor that the company wants their money - doctors (and hospitals) will often reduce their charges if they know there are insurance problems.
Also contact your state insurance commission. You should be able to find this number in your telephone directory, under "State Government".
I'm so sorry you have to go through all this on top of your medical problems!
I just wanted to say I am thinking about you, and all you are going through now. Gracies Mom gives good advice and I asked her to look at your post because I know her daughter's symptoms sound similar to yours. I hope you are able to read the info and find the support online for this condition.
You can get well and you will. It will just take time. You have to be your own advocate and research. It doesn't seem like most Drs are well versed in this situation (in my situation - lyme in general). There is another girl on the lyme board who also has this condition. Maybe her Drs or the GI Dr Gacies Mom knows can talk to you and make recommendations and suggest a referral Dr in your area for you. Even if you are not sure if it is the same condition, it would be worthwhie to check it out.
I do know how you feel about your DH and how this is not what he sighed up for. I am not the person I used to be and I am going through some of those same things. When I am having a bad day I try to concentrate on one day at a time and not look ahead into the future.