Friday, September 20, 2013

Fundraising and my reality

It has sadly reached the point again, despite my best efforts, that I have to fundraise again. I hate this. I hate asking for money. I hate my life not being in my own hands. I would give anything to be able to work. Alas, I know that without doing this, I will never live to work again. That is not an over reaction. I am not being melodramatic. My doctor said last week if I can't get this together and endure treatment then that's it. This will undoubtedly kill me. 
So please, I, without exaggeration, am placing my fate in the hands of friends and strangers and hoping that somehow, together, we can pull this off. I want so badly to win this war. I promise, I will not disappoint. I have work and art and love to offer. It is bottling up inside of me, I just don't have the energy to fight for my life and also contribute. Not now anyway. 

There are two ways to give. One is to click on the GoFundMe link just below my picture on the right side of this page. The other is to click the fundraising tab above this entry. That tab has a PayPal button. Each one offers different ways to give. Each outline my financial situation. 

Just in case you want a visual of what it looks like when I am not in public, using every ounce of energy and will to not appear sick (which, by the way, takes more energy than you can ever imagine), take a look at the link to the "Under Our Skin". Please consider watching. It won many awards and was nominated for an Academy Award. Even if you don't believe everything in the film, pay attention to the patients. Every symptom you see is something I go through almost daily. Especially Mandy's symptoms. 

While I appreciate the compliments of how good I look, I am still very, very ill. And you see me with a ton of make up on. I know how to make myself look not sick, but when I go out, I have to prep my body for days. (God, I wish that was hyperbole.) And I am stuck on the bed, couch, or floor, depending on where I land, for several more days sometimes a whole week. 


Monday, September 9, 2013

Fight to Fight..Still

For Lymies and other chronically ill persons, it can be a beyond full time job just saying alive. And that is without considering fighting for food stamps, SSDI, SSI, Medicaid, Medicare, Rx coverage, and all the people who claim we owe them money without sending accurate statements/proof.

Tomorrow, I was supposed to travel many hours away for an LLMD appointment. However, due to many separate, but equally frustrating events, I was unable to obtain transportation for the entire way. I was also unable to get in touch with my doctor, whose nurse is out for the day. I had to get an answer to the pilot as to whether he would have to spend extra time and money to take me the second leg and then get me from the airfield to the doctor and back all in one day. Now for those of you with Lyme, especially late late stage, you can probably guess what I will say next. After attempting to get these questions answered and then find solutions to the arising of more problems, I was beginning to stress about whether or not I would even be able to do the travel and be coherent enough to communicate with my doctor. 

Thankfully, after spending from 8 am to 2 pm trying to get permission to have an over the phone appointment, I got an answer that, yes that is fine. 

AND, I am getting a weird claim from a company claiming that the US government has okay'ed them to bill me for 500 bucks. Claiming it has to do with back pay on my SSI. So after many (checking my phone...8 to deal with this issue and 7 calls and 3 emails to figure out the doctor appointment ) calls between this company and the local SS field office, I have been reassured by the office, that without a written bill to me and an official appeal to SSI, they cannot legally make me pay. I know this is going to come up again, but at least I know where I stand legally speaking. 

All while doing the normal things like showering for the first time in days, taking meds (eating and drinking painfully required) and getting my Monday injection. I also somehow managed to walk to the library to get some books on cd to put on my ipod for the flight/drive tomorrow if it was to occur. It is insanely hot outside. 

At least I know I don't HAVE to do anything until 20 min prior to my appointment over the phone(!) tomorrow afternoon. Now if I could only get my amygdala to stop freaking out and telling me that I am about to die, I could relax enough to make lunch and take those pills. 

And with that, I leave you with the hope that someday soon, I can hop on here and write about how much better I am doing. But in the meantime, I will rely on my favorite Doctor and the Ponds to help me calm down.