So I've started going to the Chiropractor. The first visit cost me $59, the second was $50. Each visit after is $45. I have to go twice a week, then gradually put on monthly for maintenance.
I submitted my receipts from physical therapy for reimbursement, and mentioned I would be doing the same with my receipts from the Chiropractor. My assistance program needs a letter from the doctor stating that I had to go to PT because of my Gaucher's. I don't have a letter saying I had to go to PT becuase of my Gaucher's because no one has connected those dots yet. So now I have to try to convince a doctor that my back problems are related to my Gaucher's even though there was "no Gauhcer activity" in my lower back. Why can't we just say everything is Gaucher related until it is proven otherwise? There is still so much that we don't know about this disease, we shouldn't have to rule things in. We should rule things out. I'm 34 and have lower back arthritis and can't sit, stand, piss, sneeze, cough, or wipe myself without pain. I had to quit bowling, which I loved, becuase of the pain. I can't get an injection to relieve the pain because there's a high risk of internal bleeding from my Hemophilia which could cause nerve damage and paralysis. And now I have to try to link my medical conditions to Gaucher's to get reimbursed by my assistance program? Seriously? Where are we supposed to come up with the money to treat our diseases and ailments from the diseases? How am I supposed to come up with $90 per week for treatment? I had to quit PT because I couldn't afford the $60 per week it was costing me, and now I have $90 per week. I haven't had a pay increase in over 2 years, yet my medical bills had no problem increasing. Who is out there to help me with all of this? I have no one to talk to. I have no one to help me pay for this. I have no one who understands that can help. What am I supposed to do? I mean really? I'm living with horrific pain daily which affects my mood and work. I have to take time away from work to stretch my back or go to the doctor. I can't focus on anything because the pain takes my focus. I can't sit and watch TV without being in pain.
No one can give me an answer on how to make the pain stop. All I can do is pop pills and exercise. My orthopedist recommended going to the Chiropractor since the PT he recommended didn't work. It's really hard to exercise the part of your body that sends you into lightning, electric, star-seeing pain anytime you sneeze, let alone try to bend over. The stretches just seemed to make the pain worse.
So not only am I in excruciating pain, but now I have to figure out how to pay for everything.
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Thursday, August 27, 2015
Tuesday, August 4, 2015
Life with a rare disorder
I have Gaucher's disease, Hemophilia, Thyroid disease, and managed type 2 Diabetes. Needless to say, I'm stressed, depressed, and beat up. My focus is Gaucher's disease for the most part, followed by Hemophilia. These two affect me the both in terms of day to day life and overall health. What is it like to live with the stuff I have? I'll be blunt.
It fucking sucks. I have been dealing with lower back pain for a little over 3 years now. I have arthritis in my lower back right at the base of the spine and tail bone. Today my orthopedist told me that i could look into injections, but it is extremely risky and he didn't recommend it. Since I'm a Hemophiliac (38% Factor VIII), I could get an internal bleed at the injection site, which could put pressure on the nerve and cause nerve damage. This nerve damage could lead to paralysis. Yay.
That brings me to my A.D.D. form of thought. Doctors. Thankfully, I have an understanding employer who knows my situation. I have to get infusions every 2 weeks which takes about an hour just to set up (time away from work). I have to visit my Gaucher's doctor every 5 months. He is 250 miles away, so I have to take a day off work to drive 4 hours, see the doctor for 15 minutes, then drive back home for 4 hours. I have to fill my tank twice (there and back), and at these gas prices, I need a freaking loan. Never mind the wear and tear on my car. Why travel 250 miles? Because that is the closest Gaucher's specialist who actually gives a damn about his patients. Then I have to pay the copayment. Oh, and Gaucher's requires a CHITO test to monitor the disease and make sure it isn't getting worse. Fuck-head Florida Blue doesn't cover the only lab in the state that performs this test, so I have to come up with $350+ out of pocket to pay for it. 100% my responsibility. Add on the cost of the medication to keep my Gaucher's under control. Without insurance, my dose and my brand drug costs $30,000+ per month. That is thirty THOUSAND dollars per MONTH. I barely make that in a year. With insurance, my copay is $120 per month.
I have to see my primary care physician every 6 months. This is for regular checkups. Except I never get to see him only twice a year. With my back, I'm going to him every 3 months or more. Add on the copays, plus the cost of medication I'm not supposed to take because of my Hemophila. So now I have to take time off work every 3 months or more to go to my primary care doctor. Luckily, I'm salary, but I still have to make up the time, which means less relax time and time with family.
I see my OBGYN once a year, but because she's playing around with my woman health, I have to call her every couple of months telling her I still get my period twice a month and now have so much acne, I look like a 14 year old. With gray hairs. More time away from work to make a phone call and answer her nurse's call back.
All this makes me nuts and depressed. Suicidal? Sometimes, but never enough to actually put deep thought or try anything. Just along the lines of "I can't take this anymore, I don't want to live like this anymore, make it all end." So now add in a psychiatrist. And more copays and drug costs. Oh, and more time away from work. I see her every 3 months. The antidepressant I'm on works so well, I have NO emotion at all. I'm no longer lovey dovey, excited, happy. I'm "Ok" to everything. I might lose my job? Ok. 3 year anniversary with a wonderful man who loves me so much? Ok. The last drug gave me Diabetes, osteoporosis, and fucking lactation. That one was fun.
I had to go to physical therapy for my back for 4 weeks, 3 times a week. At $20 each copay. And more time away from work. I bought a $350 computer chair to try to help with my back. All out of pocket.
Getting help with all this is damn near impossible. I have to fight with insurance, try to come up with hundreds of dollars. Yes, there is assistance to help, but only if they have the funding. Which in the beginning of this year they did not, so I had to pay for MRI copays ($500), CHITO test ($350), and I can't remember what else out of pocket. We're talking about around $1000 that I have to magically pull out of my ass. When I first got Florida Blue, they refused to cover my Gaucher's medication because "there [wasn't] enough proof I needed it." I was refused my life saving medication for over a month because there wasn't enough proof. I've been on medication since 1992, every 2 weeks with the exception of Genzyme's fuck up when they had to close shop for a year because of a contamination. The drug company gave me free drug until Florida Blue worked their shit out. They demanded I get certain tests done to prove I needed it. No lab that performed the required tests were covered by my insurance. So they required me to get certain tests done but did not cover the only labs who performed the tests. In the entire Central Florida area, within 100 miles from me. They didn't look outside of 100 miles. They finally settled for a different test and allowed me to get my medication. How kind of them.
With all the work I have to miss because of my illnesses, there is no way any other employer would allow me to stay working for them. I would be unemployed with no way of paying my regular bills, let alone my medical bills.
It fucking sucks. I have been dealing with lower back pain for a little over 3 years now. I have arthritis in my lower back right at the base of the spine and tail bone. Today my orthopedist told me that i could look into injections, but it is extremely risky and he didn't recommend it. Since I'm a Hemophiliac (38% Factor VIII), I could get an internal bleed at the injection site, which could put pressure on the nerve and cause nerve damage. This nerve damage could lead to paralysis. Yay.
That brings me to my A.D.D. form of thought. Doctors. Thankfully, I have an understanding employer who knows my situation. I have to get infusions every 2 weeks which takes about an hour just to set up (time away from work). I have to visit my Gaucher's doctor every 5 months. He is 250 miles away, so I have to take a day off work to drive 4 hours, see the doctor for 15 minutes, then drive back home for 4 hours. I have to fill my tank twice (there and back), and at these gas prices, I need a freaking loan. Never mind the wear and tear on my car. Why travel 250 miles? Because that is the closest Gaucher's specialist who actually gives a damn about his patients. Then I have to pay the copayment. Oh, and Gaucher's requires a CHITO test to monitor the disease and make sure it isn't getting worse. Fuck-head Florida Blue doesn't cover the only lab in the state that performs this test, so I have to come up with $350+ out of pocket to pay for it. 100% my responsibility. Add on the cost of the medication to keep my Gaucher's under control. Without insurance, my dose and my brand drug costs $30,000+ per month. That is thirty THOUSAND dollars per MONTH. I barely make that in a year. With insurance, my copay is $120 per month.
I have to see my primary care physician every 6 months. This is for regular checkups. Except I never get to see him only twice a year. With my back, I'm going to him every 3 months or more. Add on the copays, plus the cost of medication I'm not supposed to take because of my Hemophila. So now I have to take time off work every 3 months or more to go to my primary care doctor. Luckily, I'm salary, but I still have to make up the time, which means less relax time and time with family.
I see my OBGYN once a year, but because she's playing around with my woman health, I have to call her every couple of months telling her I still get my period twice a month and now have so much acne, I look like a 14 year old. With gray hairs. More time away from work to make a phone call and answer her nurse's call back.
All this makes me nuts and depressed. Suicidal? Sometimes, but never enough to actually put deep thought or try anything. Just along the lines of "I can't take this anymore, I don't want to live like this anymore, make it all end." So now add in a psychiatrist. And more copays and drug costs. Oh, and more time away from work. I see her every 3 months. The antidepressant I'm on works so well, I have NO emotion at all. I'm no longer lovey dovey, excited, happy. I'm "Ok" to everything. I might lose my job? Ok. 3 year anniversary with a wonderful man who loves me so much? Ok. The last drug gave me Diabetes, osteoporosis, and fucking lactation. That one was fun.
I had to go to physical therapy for my back for 4 weeks, 3 times a week. At $20 each copay. And more time away from work. I bought a $350 computer chair to try to help with my back. All out of pocket.
Getting help with all this is damn near impossible. I have to fight with insurance, try to come up with hundreds of dollars. Yes, there is assistance to help, but only if they have the funding. Which in the beginning of this year they did not, so I had to pay for MRI copays ($500), CHITO test ($350), and I can't remember what else out of pocket. We're talking about around $1000 that I have to magically pull out of my ass. When I first got Florida Blue, they refused to cover my Gaucher's medication because "there [wasn't] enough proof I needed it." I was refused my life saving medication for over a month because there wasn't enough proof. I've been on medication since 1992, every 2 weeks with the exception of Genzyme's fuck up when they had to close shop for a year because of a contamination. The drug company gave me free drug until Florida Blue worked their shit out. They demanded I get certain tests done to prove I needed it. No lab that performed the required tests were covered by my insurance. So they required me to get certain tests done but did not cover the only labs who performed the tests. In the entire Central Florida area, within 100 miles from me. They didn't look outside of 100 miles. They finally settled for a different test and allowed me to get my medication. How kind of them.
With all the work I have to miss because of my illnesses, there is no way any other employer would allow me to stay working for them. I would be unemployed with no way of paying my regular bills, let alone my medical bills.
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