Why me right? Why now? Why should you take out your wallet and decide that I deserve your pledge more than any other person who is suffering on this site? Maybe I don't but I do know that I am struggling and I have been for a long time now. Enough to ask for help and that's an awfully difficult thing to do if you have never had to do it before.
You see I was always the strong one, I took care of everyone else. I got great grades in school, was a competitive figure skater when I was younger, went to college all the way through to a Master's Degree as a Physician's Assistant. I worked for the volunteer fire department in my town as a paramedic on the ambulance and I loved every minute of it. My life was taking care of those who were sick and injured. I loved to compete in Ballroom Dancing and I played pool on a co-ed billiards team. My life was full and happy.
There was just one major problem, I kept getting sick and I mean REALLY sick but no one could tell me why. In 2003 I had unexplained fevers for 6-8 weeks every day that ran from 99.4-101.0, my abdomen was all bloated so they put me in the hospital thinking that my uterus was infected. In 2005, I had a sinus infection for 2 months that wouldn't go away after 3 courses of antibiotics and I ended up with meningitis (viral). In 2006, I had a skin rash called Pityriasis Rosea which is not contagious but looks like a Christmas tree pattern on your abdomen and it just goes away on it's own but I knew that my immune system wasn't working right. I still had headaches every day from the meningitis. I had another spinal tap in 2006 but it was negative this time so at least that was good. In 2007 though, it happened again. I got the same brutal headache and stabbing pain between my shoulder blades so off for another spinal tap and it was positive for my second case of recurrent viral meningitis. I knew something was terribly, terribly wrong so I started seeing doctors and looking for answers as to why I was getting so sick. This time the meningitis really did a number on me. The fatigue was beyond explanation and I lost 35 pounds when I am a small person to begin with.
I started by going to the Mayo Clinic to see their Adult Immunologist. I figured why fool around, go to the best if you have it at your doorstep. Not only could he not help me but it turned into a three year all out war with my insurance company after they had given me special permission to see him. Then I saw a total of 13 other doctors over the course of three years (2[phone redacted]) and spent thousands of dollars mostly out of my own pocket before the diagnosis would be made. I had Chronic Lyme Disease.
I had been bitten by a tick way back in the year 2000 and at the time, the doctor refused to treat me with antibiotics. Who was I to judge? I listened to the doctor. It was the worst mistake of my life. So here it was 2011 when I finally got my official diagnosis of Chronic Lyme Disease and everything in my body was a mess. All my vitamins and minerals were screwed up, my muscles and joints hurt all over with a pain like the worst flu you have ever had but ALL THE TIME, my head pounded, I was sensitive to light and had to wear sunglasses in the house, I was sensitive to noise, I had fatigue so bad that I could sleep for 24 hours straight without waking up, I had such memory loss that I couldn't remember things that were said to me only 15 seconds prior, I had confusion and lack of memory recall, I had swollen glands the size of a golfball in my neck that you could see when I turned my head sideways. There was no question that I needed to be on some serious antibiotics and right quick.
Thankfully, I was still able to work at the time for about the next 8 months until I got too sick and then I COBRA planned my health insurance so I had good prescription coverage because some of the medications I was taking were $1500 a month. However, every visit to my Lyme doctor was never paid for by the insurance company. It all came out of my pocket. Every electrical stimulation treatment she gave me, IV bag of vitamins ($135 each), RIFE treatment, office visit ($140 each) monthly, all the supplements (sometimes I was on 4-6 bottles a day at $25-$75 per bottle estimation) were paid for out of my pocket, nevermind the co-pays at the pharmacy for the 10-15 other prescriptions I was on that my insurance was paying for. I would reach my deductible in February or March every year and the rest of the year my drugs were free! In the first year of treatment, I easily paid out at least $25,000-$30,000 in medical bills out of my own pocket just for Lyme treatment because the insurance company doesn't recognize Chronic Lyme Disease as a disease that can be coded and charged for.
Things are slowly improving now as many states are starting to realize how serious of an illness this really is but it is very late in the game for me. I have already lost my career which I had worked so hard for that Master's Degree, lost my home, lost my ability to live alone anymore because I need a caretaker, lost most of my friends, no social life at all--I am a complete recluse and I thank God for this computer because it is my connection to the world. I started a blog called LymeLens.com and that was a way for me to really communicate with others who share my issues. It's been having some technical difficulties lately but I am "promised" it shall be functioning again soon.....we'll see! I am now 44 years old, disabled, bedridden and not quite sure how much longer my small amount of savings will supplement my disability check. My world has gotten very small.
So, to answer my initial questions, why me? Why now? Why choose to donate to me instead of someone else who told you their story on these pages? That's up to you. Maybe I was your PA one day and I was kind to you or someone that you loved and now you can't believe that I am sick and need your help. Maybe you worked with me and I taught you something or I was nice to you when someone else "above you" was talking down to you. Maybe your daughter is a figure skater or a ballroom dancer and you couldn't imagine this happening to her. Maybe you just hate Lyme Disease and you want to help someone who is fighting the battle to live with it. Whatever your reason is for deciding to donate to my fund, I thank you from the bottom of my heart. I will be using your money to survive. I don't get enough money to pay for my massively expensive drug plan and they kill me for my supplementary medical insurance plan because I am so young and on disability. Once I meet all my basic need bills of rent, utilities, insurance, medications and doctor's appointments there is nothing left for food or emergencies so your donations will be feeding me, helping with the cost of the health insurances so I can set aside some funds for emergencies because they always come and they inevitably end up on the credit card which is the worst place for them to be. I am not in a major hole just yet but I don't want to get there either.
Thank you so much for taking the time to read my story and listen to my plight. Everyone is bearing their own burdens around the world right now but you were kind enough to stop and take mine on for a while. That makes you a generous soul already. Bless you and those who love you. ~Anne
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