Sunday, January 13, 2013

Treatment and fundraiser update

Here is an email I sent out to friends and family. I promise to get back to other issues with Lyme life soon, but this is the most pressing matter for me right now. 

"This has been such a long journey and I feel like in many ways, it has just begun. The fundraiser at the end of last summer provided living costs and funding to get blood tests and my diagnosis of neuroborreliosis. Now we also know that I have babesiosis and bartonella. My doctor who so amazingly diagnosed me with these things is ill-equipped to see me through treatment of these other infections. So here is what I am looking at now. I definitely need a new doctor. I have found one, but he is far away. 8 hours. It would cost $600 to have and get to the initial appointment. He is able to see me in February, if I can come up with the funding. After the first appointment, he can do phone consults and long distance lab work. Each of those cost 175 which is less than my current doctor who is not as knowledgeable as my case needs. My illness has progressed so much that I need someone who is more experienced in the matter. Also, part of my pain is unrelated to Lyme. I have fairly severe scoliosis. To the point where some of the vertebrae in my neck are starting to degrade on one side and grow spurs on the other. My treatment for this is at the only local chiropractor who is certified for scoliosis treatment. He has prescribed 3 visits a week for 8 weeks, followed by 2 visits a week for 5 weeks. The main problem with this is not so much the cost (at $1,245 for the entire treatment) it is the 40 mile round trip. I need gas money and someone or several someones to commit to help me get there for each appointment. I am on food stamps now (thank God)! This helps very much. I am still waiting on the pending SSDI and Medicaid and section 8 housing. So for the moment, I need $500-600 for rent and utilities. And another $500 a month for payments on previous medical and related bills. I don't know how much the medicine costs will be after I see the new doctor, but at the moment they are about $500 a month. I have been told by SSDI that they want me to see one of their doctors on Jan 29th. (My lawyer says it is good news that they want to see me and that they haven't just sent me a denial.) Presently my income is only what people donate to me. While my completely shaved down to only bare necessities is $1,610 per month. (Though this may go up with a change in treatment.) The initial fundraiser and then some smaller requests have gotten me through since then, but I regret to say, I need help again. Honestly, looking back at the end of last summer, I didn't know if or how I would survive to this point. I feel confident that seeing this new doctor will expedite my fight and I will be able to return to my life within a year or so. However, I need help to make it until my SSDI case is approved. I am hesitantly confident in my case. I have been keeping logs of my symptoms to show their doctor, who just needs to see and let the SSA know that not only am I unable to do my former job, but currently completely unable to work any job. If you received this from me, it is because I love and trust you and/or you have asked me if there is anything you can do to help. If you received this from one of my army of angels, then they must have faith that you or someone you know can help in anyway of any size. If you know me, then you must know how hard it is for me to ask others to help me pay for things. I very much want to get back to work and regain my independence. That being said, please, anything helps. Many small amounts can add up to a larger one. If you can financially contribute, please consider. Either way, please share my story and fundraiser information (feel free to copy this email) with everyone you can. Maybe the first person who you tell cannot give money but they might tell someone who can. Feel free to share any or all of this message. I will also post it on the fundraiser page. Some people are hesitant to do online payments. For them, they are free to send me help directly. I can cash checks. Thank you all for helping me in this war. I will win. I will get back to my life! 
Peace and love! 

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