Below is a letter that I sent to people in my address book. I now am feeling guilty for sending it. Not because I don't think they won't want to help but because I'm so tired of being everyone's charity case. All I want is to be back to normal. I'm just Tired and I think this is the last of my fight. I'm going to my Last doctors appointment on Monday and I'm going to ask him to wean me off of my meds. I can't afford them anymore. My husband has taken on this role of taking care of everything and now I can't bring myself to tell him that I think something is wrong. Either I have my meds all screwed up or I have tumors growing. What else could be causing all of this pain. I'm just so tired. I'm losing my fight and it just seems like I should be putting my energy into my children and my husband. I would rather be spending time with them and knowing that I'm enjoying them. I don't want to continue to leave them with a bunch of unpaid medical bills. I'm just TIRED. Here's the letter. You tell me what you think. Maybe I should apologize and send out a retraction e-mail.
As all of you know I am battling a benign condition called Neurofibromatosis Type two. What this means is that I don't have my chromosome 22 which will disable tumor growth on my spine and in my brain. This has caused numerous tumors called meningiomas to grow on and in my brain.
I had surgery on August 25 to remove 5 tumors and they were only able to remove 4 fully. The 5th one was a bugger and was attached to a major vein in my brain and it started to bleed. My Neurosurgeon was able to remove 90% of that one. This surgery has left me with some deficits but I am alive. I continue to live my life the best that I can.
This past year has left my family in a financial hardship to say the least. I have been unable to work and my husband has had to pick up the slack. We are trying to survive on one income and it's so overwhelming. The medical bills keep piling in and are totaling over $150,000.00 as of right now. Needless to say my health has to be put on hold so that we can try to catch up.
You are probably wondering why I am needing a fundraiser. No, it's not for our bills. We are working on that. I have the opportunity to fly to Bethesda Maryland to the National Institute of Neurological Disorders and Stroke. They are paying for my plane fare and reimbursing me for most of my hotel stay. I need help coming up with the money up front. This trip is going to cost me about 1200.00 out of pocket before I get reimbursed.
There are benefits to going to this clinic. I will get two FREE MRI's, Vision and Hearing Testing, Gate and Balance Testing and Vestibular Testing. This may not sound like a lot to you but it means a savings of about 10 - 15 thousand dollars to my family. It also will put me in line to have my next surgery at their hospital at their cost. My insurance isn't good. This is the only way I can see us continuing the fight of this disorder. I myself am running out of fight. This is my chance to give this disorder a swift kick in the butt.
I appreciate any ideas and any help you can give,
Kelly White and Family