I am battling several diseases all of which are capable of taking my life. At my time of diagnosis (April 2014) I was told that I would have died within 12 months time had I not received medical intervention. That didn’t seem real at the time, I guess because I was digesting so much other information that was thrown at me and my primary thoughts were focused on how to get better and how to stay alive. Sometime in August that fact hit me like a ton of bricks. I had survived a near fatal car accident when I was 5 years old. I fought then, just like I am fighting now. Only this time, almost everything that can go wrong has. Money doesn’t make the world go ’round but it sure as hell helps. Especially when you are fighting for your life. The sad thing is that I have learned that not only did I count on people that have “disappeared” as friends but in my darkest hour(s) of need, with few exception, I have had even less support in raising funds to help keep myself alive. With all my connections as a 911 dispatcher and former volunteer firefighter, I honestly hoped for help when I needed it and there has been almost none.
Let me preface the rest of this with the fact that for as long as I can remember, I have always been “obsessed” with money. I never wanted to be broke! I worked hard to build my savings, I was more frugal than anyone I have ever met. Having enough money to cover 6 months of bills was not enough for me, so I kept hoarding money for that “rainy day.” Thank God I did! I was in another really bad accident several years ago and when I got my settlement for that most of it was deposited into my savings account, while the rest was spent on essentials and house repairs.
When I started my battle with Lyme, Babesia, Bartonella and Mycoplasma, I was scared in so many ways. Scared of the pain, the length of treatment and all that I knew was to come. I have always worked well when I can calculate a plan. I crossed all my “t”s and dotted all my “i”s even before I actually began treatment. I was lucky enough to have a job that I could medically retire from and from what I was told would only be a 3-4 month process. I am now 7 months in, with an attorney involved, and still won’t know anything until most likely the end of January (this means that I have received NOTHING from my state retirement.) I also applied for State and Federal disability and other than food stamps, have received NOTHING from either one of them as well. My last day of work was January 2nd of this year, which means I have stretched my savings as far as I can. After this month I will have $43 left to my name. I have no idea where the money is coming for my house bills nor my treatment.
Prior to beginning treatment, I spent an extensive amount of time on the phone with my insurance company speaking to multiple people to make sure that the information I was receiving was indeed correct. I was counting on reimbursement from them. I knew that because the doctor I was seeing was out of network, I would receive 80% of the “allowed” amount back after all my deductibles and insurance co-pays were met. So I knew I wouldn’t be getting everything we (my mom and I) spent back but that I would be getting a large part of it back. Out of $20,000 dollars submitted in claims, I was promised that I was going to be getting a minimum of $12,000 back. That is until my claim was “accidentally deleted.” (Side note: claims are supposed to take 2 weeks for payment and I am in the 4th month of my claim.) After the claim was re-entered I went from $12,000 to a total of $538.66. How does that happen?! I have spent hours on the phone, over the course of the last few months, trying to get things straightened out to no avail. The latest being that I need to file an appeal process (which is usually denied anyway.) Basically, I was point blank lied to by my insurance company and they are now trying to get out of paying me what is due to me. I have enlisted help because I mentally can not handle it anymore.
I have always paid my premiums. I even opted for a PPO (the more expensive insurance) so that I would be allowed the freedom to seek treatment from the best doctors I could find, not just the ones I was told I had to see. My insurance company paid for treatment after treatment for each misdiagnosis I received without question. When I was misdiagnosed with Multiple Sclerosis, my insurance company was spending $50,000 a year for just ONE medication. There was no second guessing, no pre approval required, they just doled out the money for it. What sickens me is that for what they were willing to spend on just that one medication which I would have been on for the rest of my life, had it truly been MS, my ENTIRE treatment with my port in place (IV) would be covered, yet they refused to pay for it or even give me what I am owed! How much sense does that make? I have tried bringing that up to my insurance company but it makes no difference.
All the promises that I was made, are wrong. I accepted treatment based on the information that I was given, not just by insurance company but by the State and Federal governments as well. I have cut every corner, financially that I possibly could.
I started a GoFundMe account to help with my situation. I have never asked for charity in any form in my life, but if there was a reason to do it, now is the time. It makes me cry to see how little it has brought it, especially when I see $10,000 being raised for a dog in 4 days or $15,ooo being raised for a trip to Europe in just 10 days. I am not a resentful person and I try to celebrate other people’s successes but I can’t help feeling angered and hurt.
If I had cancer, I feel like I would be in a completely different situation. Everyone wants to help when they hear cancer. But the truth is that Lyme disease alone (not to mention my other illnesses) infects more people every year than BREAST CANCER, AIDS, the SWINE FLU and the AVIAN FLU COMBINED! People still think that Lyme is curable when it isn’t. Even doctors aren’t educated enough to recognize it early enough. Insurance companies see to it that they don’t pay for Lyme treatment and punish the few doctors that are willing to treat it. It sickens me and breaks my heart.
I have been lucky enough to have help so far from my family (primarily my mom) in getting the treatment I have so far. But the money is gone and I don’t know if I am going to be able to receive my next round of treatment. Stopping treatment at this point would be a disaster! The Babesia, which is the most deadly is not gone yet and stopping treatment would give it free run again and it could come back stronger than before and kill me in a matter of months. Living with that fear is something I wouldn’t wish on anyone else.
I am supposed to be stress free during treatment because stress is detrimental to my progress. It causes me to herx, takes me days to recover from and suppresses my immune system which needs all the help it can get. Fighting with the government and insurance companies and dealing with lawyers…BAD! BAD! BAD! Despite all of the setbacks I was finally starting to see improvements. I was having good days more frequently. That is all changing. Even with all the medications I have to help with stress, anxiety and OCD, its not cutting it anymore. The idea of delaying and/or stopping treatment is overwhelming. I DO NOT WANT TO DIE!! I have already started having more and more days and nights where the thought of suicide is creeping into my mind not because I want to die or give up, but I do not want to die slowly, on the same path I was before treatment. I don’t want these diseases to take me, especially slowly, while not only do I suffer but my family does as well, in particular my mom who would see it on a daily basis.
I need help and am reaching out in every way I know possible. I’m trying to survive right now, one day at a time. If you are planning on going through extensive treatment, do everything you can to start getting income as fast as you can. Start begging if you have to, early on. No one likes being a beggar but if it choice between life and death, you do what you have to. Keep pushing and pestering. I wish I would have been more humble in the beginning and realized that but this has been a learning experience for me. I’m trying to save anyone I can, from being in my shoes. YOU ARE THE MOST IMPORTANT PERSON TO YOURSELF AND YOU HAVE TO FIGHT! Even when you don’t think you can, you have to muster the energy to SAVE YOUR OWN LIFE! Lyme alone, left untreated can and mostly likely will kill you, so fight! I hate putting things so bluntly but given the consequences of the situation, you need to know, in no uncertain terms. This is not a time for beating around the bush. Do your homework, learn as much as you can (I know how difficult that can be) and be prepared. This is unlike anything you will have to go through in your life. With more and more people becoming infected every year, the financial resources are becoming less and less available. Most charities that used to help with treatment costs are “no longer accepting applications” because they are tapped out.
If you are reading this and can spare even $5.00 please help me in my fight at http://www.gofundme.com/LadyLymestorm. If you can’t make a donation, you can always help by sharing my information.