Monday, April 15, 2013

Just keep swimming, swimming, swimming

I am back at the fight. I had some pretty hard times this week. I haven't given up. Though that reminds me I need to take my meds. I am looking forward to getting a second appointment with my LLMD in 3 weeks. This time I am taking one of my besties with me. She also is very sick with Lyme and Company. I am really hoping that this is the path to health for both of us. We found each other on a Facebook Lyme group. Some days we have fun Skyping and such, and other days it's one of us holding the other up. When it gets really bad, it's both of us somehow encouraging each other and trying to believe our own words. 
(1/10 pills down)

I think part of the reason I have been so bad lately is the weather. Midwest weather is never stable. Each front that come in I can feel for days as it makes it way to us. 

This week on the war front:

I lost my food stamps, for no reason. I have spoken to a lawyer. And reapplied. Consensus among those with any ounce of sanity cannot figure out why. So I will be fighting that again. I will know by Thursday if the firm will take my case. They also said they cannot understand why my Medicaid hasn't gone through yet despite the fact that the US Government says I am disabled. (2/10 pills down)

The Medicaid thing, I think has to do with a clerk who doesn't like that I am young and asking for help. She is always rude to me and each week sends me notices that I have not provided enough information. This week I had to, by the dollar, illustrate where each from my back-pay was spent. Guess where. Meds, doctors, old med bills, old living expenses, and a giant lawyer fee to get SSDI approved. I really feel like she is trying to prolong a process that shouldn't be. Also she lied and told me I didn't have to worry about losing my food stamps after she had already officially closed my food stamp case. 
But like a good girl, I suffered through the heavy physical pain and went through every single expenditure I had after I got awarded and accounted for all of it. I find myself very anxious about the next curve ball she will send. (Though, I used to be a kick ass goalkeeper so I am sure I'll take care of it.)

I am trying to get on the hardship programs with pharmaceutical companies. I have been playing phone tag for days. This is particularly tough as I have not yet learned what new prescriptions I will be on after the upcoming trip. Maybe I am jumping the gun here, but I would rather know who to call with the script in hand than stand there and not be able to fill it. 

I went to the eye doctor because I keep getting headaches after 30 or so minutes of reading/writing. My eyes are fine. He thinks, and this is a shocker, that it is neurological. Basically, when you focus on something close to you your eyes point together. When I get tired, my Lyme infected brain forgets how to do that and I start seeing double. Me being me, I over work my muscles to counter the neurological exhaustion and then get headaches. So to recap. Eyes are 20/20, still might need glasses. I will go back in a month and do a test where they have me read for an hour and then put prisms in lenses to make my eyes focus so I won't get as tired to see for sure. But overuse of these can cause my brain to forget the skill on its own so I am undecided about it. 

(6/10 pills down)
Whew, baby. Why is taking meds such a process? I feel like it should be simple. Oh right, that whole my body hates everything thing. The last 4 are staring at me taunting me like that last shot of something disgusting your college friends want you to consume with them. But taking the last 4 means that I start the timer for 2 hours and I have to do it again. I want to quit*. I want to be well. "Stop whining, no pain no gain!" Maybe I spent to much time as a child athlete. Maybe not. Maybe that's why I can still keep going. Ok doin it! 
*quit fighting everything, not quit life

10/10! 
Please tune in in 2 hours to see what happens next. Will Erin be able to take her meds? or will some random force suddenly heal her off all bacteria?! *Spoiler Alert* I'll unenthusiastically and anticlimatically take the pills. 

Ok, and for my least favorite part, even more than taking the pills (I KNOW! Right?) It's time I ask for help again. I am needing to raise about $7,000 in the next month. So please know that if I had any other option, I would do that. My dear friend is actually running this and when bill are due will pay them from the fundraiser account. Rest assured, each dollar and penny will go to a doctor, pharmacist or something else directly related to keeping me alive. This actually allows for 100% to go to those bills. On the fundraiser sites, I took a cut. So here is my plea: If you can give $10 or more please do. And please spread the word. If you tell someone, "Hey, I know this really groovy chick who could really really use your help, here is her site please consider giving and sharing," maybe we can make this happen. I am not sure if you can pm me from the blog, maybe just on google+, but if they have any questions about how it works or the validity of the fundraiser, I will glady answer them.  
A quick illustration why getting the word out is important:
If the average donation is $10, to reach my $7,000 goal, I would need 700 people to donate.
If the average donation is $15, to reach my $7,000 goal, I would need 467 people to donate.
If the average donation is $20, to reach my $7,000 goal, I would need 350 people to donate.

So the more people that know and help, the easier it is on everyone's wallets. Please, please help me fight for my life. 

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