I really don't know what to say, I feel so alone in this world other than, then only thing that gets me through this life is the faith I have in my Lord and Savior. I desperatly need treatment, but I have done everything in this world I can think of to get help, written letters to state reps, senators, governors, members of congress and even emailed the President of the United States. My family, extended family is not poor but no one is in any financial state to help me with the cost of continuing medical treatment. I was lied to by my medicare supplemental insurance agent and lost my coverage in 2005, and since that time the only treatment I have gotten is xanax to deal with the anxiety, lasix, and anti depressants. I don't know when and why money became more important than people and I am so :Angry: that I can't stand it. How can not only one dr. but tons of them refuse to see someone just because they don't have any insurance other than medicare. I have lost my life, I have sat alone daily for years, because everyone, family, friends all work, I can't spend much time with my grandchildren because the noise they make is like needles in my brain, I am stripped of anything and everything because of lack of money. I have social anxiety because of my in ability to even afford to go to lunch with someone, and then if the resturant has many people at all, I go into a panic because I can't deal with the different conversations all going on at the same time. My primary Dr. feels as though he has failed me as he has tried to get Neurologist to see me but to no avail. No one in my family has ever bothered to sit and read about this diease so they don't know what I am going through, I feel like a failure to my family, I can't even volunteer because of the pain i am in. I have no doubt that the only thing that has kept me from ending my life is my FAITH.

My dear LaDonna [You must be registered and logged in to see this image.] my heart goes out to you, and after reading the first post you did, I went to the IHRF, and found some resources that might be of some help to you, and I've posted them in our Useful Links section, to save time here is the link to these resources for help with medication costs.


I really hope they will be of a great help to you, and take away some of your stress and worry. I want you to remember that this is NOT your fault, and that you should not feel guilt, or take the blame for an illness that you never saw coming. In regard to the noise, if you could get some earplugs, you might find that they are a help, especially the ones that are used by musicians and people who work in clubs. Here's the link to the site which will tell you more about them.

Thanks so much Heidi, I will check these out and pray for good news. Have a really great day!!

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I don't know your financial situation LaDonna, but here is a link to the kansas department of health, charitable healthcare.... it has income guidelines, and a list of clinics within the state

We are just barely over the guidelines, we are the one that fall in the cracks, on one hand we make too much to be eligable for help, one the other hand we don't make enough to pay for premiums. Heidi sent me a link to a state program that bridges pre-existing coverage until 2014, but my age the cost would be almost 400.00 a month on top of the 96.50 I already pay for medicare. I went on disability my income went from approx, $26,000.00 a year to just barely $9000.00 a year. $1158.00 a year goes to pay my medicare. We have lost our home, my husbands job used to give 2 annual bonuses a year plus they worked OT for most of the year, and now that the economy is bad, if they do get a bonus it is extremely small, not griping though, and there is rarely any OT at all. We are having to borrow from his 401K now to pay off medical bills, ( trips to er, and regular medical with primary) to keep them from taking us to court. So am at the point my primary does what he can without me having to come in and be seen, to save me that much money, and I can't get charity care at the hospital, because they say they already take a loss just on medicare. The stress is awful, but I wake up each day and pray, and when I make it through that day I pray again. I know that one day I will have no more pain, I just walk daily with the Lord and he always gets me through, no matter how bad it gets.

I totally understand where you are coming from. I lost my job in 2008 because of my health, at least in my opinion. My ex employer claims I was laid off due to economic reasons (my position with the company was eliminated) Just so happens they let me go the day I returned from a 12 week medical leave. I was the one who carried insurance for my family, so we are currently without insurance. Cobra continuation insurance just for me would have cost me over $400 a month. Losing half of your family income makes paying that kind of premium impossible. So, since September 1, 2008, I have been without insurance. We too make too much to qualify for assistance, but not enough to afford premiums. My husband's employer does not currently offer health insurance to their employees. The hire mostly season workers, but my husband is full-time year round, and I think they might have about 10 employees year round.

This economy has hit us all hard. They say it is starting to turn around, but I don't see it. If I could find a job that I could physically handle, I'd be happy to go back to work. but there just aren't any jobs out there. I have well over 300 applications and resumes out within the last 2 years.. I have gotten 3 interviews...

I will be praying for both of us to find some relief and to find some help somewhere. Keep your chin up

Hi LaDonna,
There is an organization that helps individuals with medicine expenses for chronic diseases. Their website is at [You must be registered and logged in to see this link.] . I haven't heard back from other IH patients that have requested help, but they try to help as many people as possible every year.

You might have your Dr. contact the IHRF. You don't necessarily need a specialist to get treatment. Your family doctor can prescribe the medicines if he can get advice from the IHRF.

It's frustrating to not be able to afford the care that you need. So many of us are starting to slip through the cracks in the system. Have you been prescribed acetazolamide? It's generic and you can take advantage of Walmart's low pricing.

Please keep us posted on your status. We care about you!

Karla,
Thanks so much for the information. I will certainly check it out and see. What is the acetazolamide? Is it like the diamoxx and topamax? The only medications that I am on for treatment for the IH is Cymbalta for depression, Xanax, well the generic vesion Alprazolime ( can't spell, lol) and 80 mg of Lasix, also the generic. I can't take the diamoxx or topamax as I had reactions to both. If you can tell me what that med does I can ask my dr., may give me some relief.
Again thanks so much for the information.

God Bless

LaDonna, Acetazolomide is just another name for Diamox. Unfortuantely we can't advise you on what medications to take, because we aren't medically qualified to do so, and don't know your medical history. Your doctor should be able to give you suitable pain relief, and it might be worht getting him to contact the IH Research Founbdation to ask them what medication might be suitable as you are unable to take Diamox or Topamax. They have more knowledge about what an alternative medication would be, as they have being doing the research for 10 years now, and they are where a good percentage of Neurologists and Doctors information comes from, or you could try contacting them yourself by clicking on the link below.