Sunday, March 30, 2014

Lyme Financing Stress

Do you ever feel like for everything you cut off of your list, ten more appear? I imagine this happens for most people. I am still trying to get a sign off locally for the care for my PICC. As soon as that is done, then boom. Pre-PICC list done. 

In the meantime, I am really struggling. I feel like this is an unbeatable boss. You know the one? Where if you don't save right and don't have enough health or life saved up, you lose the game. I am drowning in paperwork and government requests to continue to prove that I am sick.
My personality is very Type A. I dislike asking for help. My entire life, I did everything on time and on my own, even if it made things more difficult. This whole experience feels like it has been slowly stealing my identity. When I don't have wins, when I don't feel like my actions are useful or obviously leading to progress, I want to hide in a cave. The catch: I don't feel well in or out of the cave. How do I find a healthy balance? Can I have a healthy balance when I am so sick? Can I have healthy friendships and relationships when I don't have the energy to go to them? 

In the meantime, bills are due. $800 for the ER trip a week or so ago. And that's after insurance covers 90% of it. 

So to beat this game I must accomplish the following:

  1. Continue paying on unpaid medical debt payment plans. 
  2. Provide all the necessary information to the home health agency - basically I have to make the packet for the doctor to sign
  3. Get local doctor to sign off on my needs for the home health agency. My case manager is taking me to the office this week with the packet and we will just sit and wait for a signature.
  4. Obtain money to cover trip to LLMD and PICC placement while still paying old doctor/hospital bills.
  5. Outline my medical history
  6. Make 2 copies of medical history. One for my case manager and one to be dropped off with the nursing agency. 
  7. Figure out if my body will be able to handle treatment and a few hours of work to chip away at the bills. (I spoke to SSDI and they gave me the parameters of work trial.) 
The most immediate financial concerns are the PICC line placement and trip to LLMD (~$400-$500), the most recent hospital trip (minimum $721.40), and previous medical expenses ($8,327). Keep in mind that none of this includes future expenses or current medication costs. 

I know it must seem like all I do is discuss money. It does occupy a large part of my thoughts. The reality is that without money to get better, I won't be well enough to work to pay for getting better. It is such a frustrating wheel to be stuck on. I know that if some of this stress were lifted, my healing would be much faster and easier. 

Having Lyme means drowning in debt. I have seen so many people with this disease struggle so much to stay afloat. I don't feel like I can even see the waters surface. Unfortunately I cannot just take this matter into my own hands and fix it. It is so against my character to not just jump in and fix it. Ugh. So frustrating. 

Once again, my brain is fairly fuzzy at the moment, so please forgive poor grammar and structure.  

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!