Thursday, January 17, 2013

Not a good week

I had this great idea of something really deep to write. But I lost it. I can't even remember what the general concept was.

I am not doing well. I am in horrendous pain. I am emotionally out of gas. I am out of money. However there will be an appointment with an LLMD soon (2 months away), so that's good.

Honestly, I have spent most of this week crying. In pain. In loneliness. In fear. In morning of what I dreams and time I have lost. I have cried so much, I have that constant headache. It's induced vomiting. I haven't sleep for more than half hour to 45 min increments in God knows how long. I am tired. I need a break. If only I was able to work for a few days. I want nothing to do with this horrible disease. I want to hang out with people without crashing halfway through. Just a few days off where I am not unreasonably limited. Please? I really don't know how many more of these horrible days I can survive without some sort of a break. I feel like I should be on Injured Reserve yet, here I am game after game, playing hurt, getting worse and staying in for the full 90 minutes. If only there were a way to get real rest and recovery and I could have the energy to come at it full or at least half power...

I hate these posts. I don't want them to be a pity party. It's not what I or other chronically ill people need. We need inclusion. Friends to stop by. Invites to things that we are capable of joining and not worry about trying to hide symptoms. We need people to see us and our symptoms as separate (yet understand that they are inescapable sometimes) and not avoid our presence because the symptoms are weird or scary. We know they are. We deal with them constantly.

People need to see what this disease does. Honesty and openness are the only way to bring about awareness which will lead to change.

So where is the line between being open and honest and just coming across as a little whiner?

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! 

Thursday, January 10, 2013

Video update

This may become a common thing. Writing can be difficult. So can staying on topic. :) Hope you enjoy!