Lately, I have been on a Lyme Disease kick. I try and keep it at bay and not share our struggles with you because it's just not happy reading...but Lyme is persistent and I feel like it is winning. Now that I have a full time job I don't spend my days at the clinic and this means that I am out of the loop when it comes to our Lyme family. There are so many new faces; children, teens, parents, grandparents, siblings and so many loving volunteers who drive, feed and support some very sick people. It is easy for me to pretend I am not a part of this life when I pull up to the clinic to drop Scott off or pick him up...but when I go inside I am brought back to reality. It wasn't that long ago that I was driving Scott 3 hours every day and waiting alongside other caregivers for 6 hours a day. We slept in our cars in 5 degree weather, shared stories, finished puzzles, shared books, compared symptoms, offered encouragement, cried together and quickly became family. Everyone there has the same story and that can be both comforting and horrifying at the same time! The clinic is its own little world and those outside of this Lyme world seem to be apathetic to our plight. You just don't understand it unless you are living it.
Yesterday, our friend and fellow patient AS, had a seizure. She didn't have anyone staying with her this past week so she came home with us after treatment so she wouldn't be alone. Being with AS reminded me of how slow a Lyme patient needs to move and live just to get by. It was nice slowing down with her, making her dinner and just making her feel welcome. It was a good reminder of what Scott needs from me to recover. I think he needs more time to rest and I need to remember that. I try to plan activities for our family but they often conflict with what Lyme Disease has planned for that day. He can have one really great afternoon and then be bedridden the next morning. We just never know what is going to happen. I work really hard at giving the kids a normal life while they are here and have gotten really good at hiding Scott's disabilities. Most of the time they have no idea how sick Scott is. They know that sometimes daddy has to eat dinner in bed or that he needs to take a 3 hour nap but they are so gracious, loving and forgiving when we can't meet their expectations. Last weekend they ended up playing in our bedroom one afternoon because Scott was sick in bed. They just wanted to be near him for a little while.
He started a new protocol that is really making him sick. He is on IV Flagyl 3 days a week and IV Rocephin the other 4. The Rocephin is making him very sick and it happens to fall on Thur-Sun when the kids are here. We are trying to get this schedule changed so that he is not so sick when he is able to spend time with the kids. When I talk to other Lyme caregivers I realize that I am not the only one who doesn't know how to mesh Lyme Disease with every day life. It seems impossible to balance medication overload, piles of bills, depression, loss of life, disabilities, kids, family, work, house cleaning and other normal daily activities. When a loved one is dieing, hurting, suffering and fighting a chronic bacterial infection...or other illness...life seems to slow down and nothing else matters.
Now that a new year has started, so has our health insurance. I am very thankful for our health insurance but frustrated by having 2 deductibles. We have one for health coverage and one for prescriptions. We have to spend about $2000 before insurance will pay for Scott's meds. This has become a problem this month as the meds are costing $150-$300 per refill. I have had to say no to several this week already. These are not meds that you are supposed to stop cold turkey but I am not sure what else to do.
We need help but I don't know where to turn. My last resort is to add a
DONATE paypal button to our blog. If you have been blessed, have a few extra dollars and want to help us just click on the DONATE button. Any money that you donate will be used to pay for his prescription meds (until the deductible is met) or for his monthly insurance payment.
Here is a breakdown of his health expenses. Two a day, IV treatments cost between $700-$1000 a day. Our wonderful insurance currently pays between $500-600 a day with the remaining being our responsibility. Insurance has currently paid out $285,000 in the past 13 months and our portion is about $65,000. The clinic is billing us and we will set up a payment plan when we are done. We also have a $6,000 office visit bill because our insurance company does not cover these out of network visits. We also have supplements that we buy when we can. Right now, our out of pocket prescription meds are costing $2,000-3,000 a month. We haven't been able to fill all the prescriptions this month but are praying for a miracle to get it paid. We appreciate any donations, large or small that you can spare.
