Saturday, March 22, 2014

Pre PICC Adventures

Tomorrow was the day that I was to travel to my LLMD to have the PICC placed so that I could begin IV antibiotics. Unfortunately, a few other people dropped the ball. All the paperwork and discussions were unable to take place in a timely manner. Now I am left with finding said dropped balls and lopping them up to anyone willing. I thought I had a good GP here who would help me with ordering home nursing. My LLMD is to far away for them to take an order. I will have nurses here 6 times a week, each time for infusions. Twice a day MWF. IF I can get my GP to order them. I've been trying for months to get these things to work out and it seems that everyone is overwhelmed by my illness and its urgency. People back away from urgency. I'll never understand that. 

Basically, I have all of everything figured out. My meds, the nursing agency I can use, AND (yup really big 'and') they will obtain the supplies, AND my insurance will cover for at least one month. I'll have to fight with them if I need more than one month. For now, I have to assume that after month one, I will have to cover things out of pocket and IV alone will be at least $800. And the usual Rx that was out of pocket $80, has just grown to $107. I know 27 bucks might now seem like a whole bunch, but for me it is. I have $4 in my account right now. Thankfully the fundraiser helped me buy that script and $104 more of necessary medication. 

I have it all figured out. All I need is an order from my GP and continued fundraising. 

Twenty-two months ago, I realized I had Lyme. I am still fighting to be allowed to fight the disease. In the meantime, my kidneys hurt, I am falling down constantly, I can hardly eat (that's why IV meds; to help my digestive system recover and still get meds in), I can barely sleep, I don't have the energy to fight the illness and fight the system at the same time. 

I am not alone. Mine is a common struggle among more than 300,000 Americans. The CDC recognizes only them. My case isn't allowed to be reported because of where I live. Big things need to change. I often hear other Lymies saying they feel like what HIV/AIDS patients must have felt in the early days. Although this disease kills slowly and the pain is so great, it is speculated that suicide is the leading cause of death of those with LD. But, that isn't count by the government so the numbers are unknown.

Please help. Spread the word. Check for ticks. Give 5 bucks to my medical fundraiser. (Someone told me they were embarrassed that they couldn't give more than that so they were hesitant. But if many give $5, it will add up very quickly.) I am stressed about so many things and it would be wonderful to not stress about paying the doctor or for medicine. The GoFundMe link is on the right side of this page. If PayPal works better for you, follow the tab above. 

Thanks, Everyone! Happy Spring! 

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