Update on the Rebif. . .
Monday is always a busy day at work so I didn't get a chance to call the pharmacy. Tueday I did. Some how, some way, they gave me the wrong fax number. Called the doctor's office for the third time. "Didn't we already fax this twice?"
Less than 24 hours later, the pharmacy was calling to arrange shipment and I got it today. 3 months worth. With a little added bonus. Something to make you feel your insurance company is working for you. The first time, the pharmacy just sent me a bill for $90. This time it was chocked full of information. It was like a Mastercard commercial:
Market Price: $6,800
Our Price: $5,300
Your Price: $150
We saved you $5,150
Knowing that your semi-protected from any future flare-ups: We'll bill you!!!
Overall, I missed one shot and delayed another 24 hours. It still hurts like hell. My six day vacation is over. It's not back to the waiting game of "if and when." It's just that every other day reminder when I have to give myself a shot.
31 January 2008
26 January 2008
..|.. Part 2
One last ditch effort in order to get another supply of injections before I officially go off my meds as of Monday. Knowing bureaucracy, I called the new insurance company pharmacy to see if they got the script fax from the doctor's office. Nope, was the answer. I called the doctor's office and they faxed it on Thursday and would fax it again on Friday. In one last ditch effort, I called the old pharmacy to see if I could get it at cost. After a 3 minute hold wait, I was told yes, you could have a one months supply for $2,200. There it was . . . The choice to go without for a week or pay out a couple grand for peace of mind. I decided to go without.
Frankly, it will be a relief to go without the bruising, the flu, the intense headaches. Then I was struck with another thought. It's cheaper to treat a flare up of MS then it is for the semi/pseudo preventative. From what I understand a flare up is treated with Solumedrol/prednisone. With insurance, I paid $10 for the steroids and for the nurse visit and IV's $34. I know interferon has to cultivated and extracted and formulated, but $2,200 for 12 syringes?
This next part will probably tick a lot of people off. My little blow up over insurance got some people talking: Steve just doesn't understand, he doesn't know what it's like to pay more for insurance and get less. The next thing is "It needs to be fixed . . . " It got me to thinking. First off, I don't think most people can argue an issue like this without it being a personal thing. In order to do so, you have to be logical, knowledgeable, and dispassionate. The next thing is are you a bottom up thinker or a top down thinker?
To me, if your a bottom up thinker, in this situation, you argue how to make the situation better for yourself. Easiest answer is that the government needs to step in. If you're a top down thinker, you argue on how to make the situation better for everyone. You try to fix what's wrong with the entire system. I'm not going to get on a soap box and say this or that needs to be done. There's no right answer because there are no answers. I don't think socialized medicine is the answer and there are to many variables to try and fix they system.
What do you do? You make a choice: $2,200 or the greater chance for a flare up and $50 for steroids.
Frankly, it will be a relief to go without the bruising, the flu, the intense headaches. Then I was struck with another thought. It's cheaper to treat a flare up of MS then it is for the semi/pseudo preventative. From what I understand a flare up is treated with Solumedrol/prednisone. With insurance, I paid $10 for the steroids and for the nurse visit and IV's $34. I know interferon has to cultivated and extracted and formulated, but $2,200 for 12 syringes?
This next part will probably tick a lot of people off. My little blow up over insurance got some people talking: Steve just doesn't understand, he doesn't know what it's like to pay more for insurance and get less. The next thing is "It needs to be fixed . . . " It got me to thinking. First off, I don't think most people can argue an issue like this without it being a personal thing. In order to do so, you have to be logical, knowledgeable, and dispassionate. The next thing is are you a bottom up thinker or a top down thinker?
To me, if your a bottom up thinker, in this situation, you argue how to make the situation better for yourself. Easiest answer is that the government needs to step in. If you're a top down thinker, you argue on how to make the situation better for everyone. You try to fix what's wrong with the entire system. I'm not going to get on a soap box and say this or that needs to be done. There's no right answer because there are no answers. I don't think socialized medicine is the answer and there are to many variables to try and fix they system.
What do you do? You make a choice: $2,200 or the greater chance for a flare up and $50 for steroids.
24 January 2008
..|..
That's my weak attempt at the cyber finger.
Hadn't heard from the pharmacy all week so I called today. Gave them my usual information, then "Can I put you on hold?" Oh hell. A minute later, they tell me something that they should have told me earlier in the week. Evidently, with specialty drugs, the insurance companies use one specialty pharmacy. My new insurance company isn't compatible with the old pharmacy. Talk about a cluster/SNAFU/FUBAR. It is just unbelievable to me that I had to call to find this information out and then run around with my hair on fire.
After I got off the phone with the old pharmacy, made a call to new insurance company. One phone call got redirected into another one. "Sure we can help you." I had to get pre-registered with the pharmacy, told to expect a phone call in the next 48 hours to fully register, in the meantime, call your doctor and get them to fax the script in.
Enter Act II for the drama of the day . . . the over worried/over protective parents who have asked every day this week if I've heard from the pharmacy never heard a word I said last week. "Your drugs didn't show up today." Which was totally contrary to what I said last week: "Call Thursday if you don't hear from us." Explained what happened, kept getting more and more angry with every question. All of a sudden I'm being defensive and I'm a liar. I lost it.
The blow up that was gradually building up since all of this started finally boiled over. The thing that separates my friends from my parents is that my friends don't treat me any differently than before. My parents treat me like I'm soda glass and the littlest thing will break me. If I sneeze it creates havoc. I don't want people to ask how I'm doing, I'll tell you. You want to ask about MS, I'll tell you. You wanna know how I'm dealing with MS . . . couldn't tell you. Aside from the myelitis, that's the closest I've come to any similar symptoms.
There is a man at work that is in a wheelchair from MS. He's had it for 15 years. Gradually started out like everyone else, I imagine. I've only known him for about 4 years. He used to walk with a cane. On his bad days he had a wheelchair. Gradually he became worse and worse. I would have to help him out of his car because he wasn't strong enough to push his upper body up. On his bad days, myself and another person would have to cradle lift him up into a chair. He tired out easily and his muscle endurance was next to nothing.
I look at him and I am so far from where he is now or even where he was when I first knew him. I can't even compare.
After today, I just want to give the world the finger.
Hadn't heard from the pharmacy all week so I called today. Gave them my usual information, then "Can I put you on hold?" Oh hell. A minute later, they tell me something that they should have told me earlier in the week. Evidently, with specialty drugs, the insurance companies use one specialty pharmacy. My new insurance company isn't compatible with the old pharmacy. Talk about a cluster/SNAFU/FUBAR. It is just unbelievable to me that I had to call to find this information out and then run around with my hair on fire.
After I got off the phone with the old pharmacy, made a call to new insurance company. One phone call got redirected into another one. "Sure we can help you." I had to get pre-registered with the pharmacy, told to expect a phone call in the next 48 hours to fully register, in the meantime, call your doctor and get them to fax the script in.
Enter Act II for the drama of the day . . . the over worried/over protective parents who have asked every day this week if I've heard from the pharmacy never heard a word I said last week. "Your drugs didn't show up today." Which was totally contrary to what I said last week: "Call Thursday if you don't hear from us." Explained what happened, kept getting more and more angry with every question. All of a sudden I'm being defensive and I'm a liar. I lost it.
The blow up that was gradually building up since all of this started finally boiled over. The thing that separates my friends from my parents is that my friends don't treat me any differently than before. My parents treat me like I'm soda glass and the littlest thing will break me. If I sneeze it creates havoc. I don't want people to ask how I'm doing, I'll tell you. You want to ask about MS, I'll tell you. You wanna know how I'm dealing with MS . . . couldn't tell you. Aside from the myelitis, that's the closest I've come to any similar symptoms.
There is a man at work that is in a wheelchair from MS. He's had it for 15 years. Gradually started out like everyone else, I imagine. I've only known him for about 4 years. He used to walk with a cane. On his bad days he had a wheelchair. Gradually he became worse and worse. I would have to help him out of his car because he wasn't strong enough to push his upper body up. On his bad days, myself and another person would have to cradle lift him up into a chair. He tired out easily and his muscle endurance was next to nothing.
I look at him and I am so far from where he is now or even where he was when I first knew him. I can't even compare.
After today, I just want to give the world the finger.
22 January 2008
"A back, a back, my kingdom for a back"
There's something to be said for my limberness that I can put my socks on while laying on my back. Actually, that's the only way I can put my socks on. Back still hurts, but getting better. It's been bad for 15 years, some times when it goes out, it is bad, others worse, sometimes not bad at all. It's something I've just gotten used to. It hurts sometimes.
I think I'm running into insurance problems that people with MS run into. I decided on Rebif on a Friday, by the next Saturday, the mail order pharmacy was calling to set up a delivery. 1 January 2008, my employer changed insurance providers. Hindsight and all, I should have called earlier, but I called for my refill last Tuesday and gave my new insurance card. Friday . . . still haven't heard anything. Call . . . insurance still hasn't signed off on script. "We'll put a rush order on with the insurance company. Call us Thursday if you haven't heard anything." I run out this Friday.
This is where that strange dichotomy that is my MS comes in: Haven't presented with any symptoms yet I am on an outrageously expensive drug to help prevent any future outbreaks. Want to know how much of a crutch a drug is that hurts like hell to inject is when you are facing not having it. In 99% of my mind it's not that big a deal. I was diagnosed on 10/2 and didn't start injecting until 12/3. If I was under that much risk, I believe the neurologist would have forgone the steroids for the myelitis and started right with the Rebif. Nevertheless, it is still a concern. On the flip side, I'm hoping for one more round of steroids and maybe this time, the myelitis will totally go away or reduce to such a degree that I can actually play volleyball again. If that happens, I go off the Rebif anyway.
Oh ya, last nights shot . . . took my breath away it hurt so bad.
I think I'm running into insurance problems that people with MS run into. I decided on Rebif on a Friday, by the next Saturday, the mail order pharmacy was calling to set up a delivery. 1 January 2008, my employer changed insurance providers. Hindsight and all, I should have called earlier, but I called for my refill last Tuesday and gave my new insurance card. Friday . . . still haven't heard anything. Call . . . insurance still hasn't signed off on script. "We'll put a rush order on with the insurance company. Call us Thursday if you haven't heard anything." I run out this Friday.
This is where that strange dichotomy that is my MS comes in: Haven't presented with any symptoms yet I am on an outrageously expensive drug to help prevent any future outbreaks. Want to know how much of a crutch a drug is that hurts like hell to inject is when you are facing not having it. In 99% of my mind it's not that big a deal. I was diagnosed on 10/2 and didn't start injecting until 12/3. If I was under that much risk, I believe the neurologist would have forgone the steroids for the myelitis and started right with the Rebif. Nevertheless, it is still a concern. On the flip side, I'm hoping for one more round of steroids and maybe this time, the myelitis will totally go away or reduce to such a degree that I can actually play volleyball again. If that happens, I go off the Rebif anyway.
Oh ya, last nights shot . . . took my breath away it hurt so bad.
20 January 2008
Do Nothing Sunday
Backs still out. Better, but still out.
Catch .22. Book to some, just a phrase to others. All it means is a choice between two equally unattractive choices. The myelitis is set off with heat. With every shower or bath, boom . . . more tingles. What helps my bad back when it's like this: heat. Since I really can't do anything today, it's an even trade off.
Today has given me time to philosophize which I haven't done in a while. I was thinking about searching. We are searching, the difference is for what. I think that if we know ourselves, our path is clear. Our goals are defined. What happens if we know ourselves, yet deny who we are. What happens when you have everything that you've ever wanted right in front of you, yet you accept it for what it is, forget what it took to get it, and seek out the next great thing.
I think it's an empty life. You're always looking for something to fill the emptiness, yet whatever it is, you feel it is never enough. When in actuality, it's more than you could have ever wanted. You're always sacrificing what you have for the great unknown. The thrill is in the hunt and when the hunt is over, it's time to move on to the next hunt. And the next. And the next.
The thought for the day is: Before moving on and denying what you have for the next thing you feel you're missing, look inside yourself and ask if this is replacing, filling, or is the search the true representation of what you are.
Catch .22. Book to some, just a phrase to others. All it means is a choice between two equally unattractive choices. The myelitis is set off with heat. With every shower or bath, boom . . . more tingles. What helps my bad back when it's like this: heat. Since I really can't do anything today, it's an even trade off.
Today has given me time to philosophize which I haven't done in a while. I was thinking about searching. We are searching, the difference is for what. I think that if we know ourselves, our path is clear. Our goals are defined. What happens if we know ourselves, yet deny who we are. What happens when you have everything that you've ever wanted right in front of you, yet you accept it for what it is, forget what it took to get it, and seek out the next great thing.
I think it's an empty life. You're always looking for something to fill the emptiness, yet whatever it is, you feel it is never enough. When in actuality, it's more than you could have ever wanted. You're always sacrificing what you have for the great unknown. The thrill is in the hunt and when the hunt is over, it's time to move on to the next hunt. And the next. And the next.
The thought for the day is: Before moving on and denying what you have for the next thing you feel you're missing, look inside yourself and ask if this is replacing, filling, or is the search the true representation of what you are.
19 January 2008
I am in . . .
Hell. Because of the myelitis, the only exercise I can do is work out. When volleyball was my life, I worked out to improve my game. As I got older, I worked out to keep what game I had. Now, I work out to preserve what strength that I have and to keep fit in case that day comes when I have an flare up and the MS presents itself.
Every day is different and presents varying degrees of how I feel. Tuesday was back to working out. Leg day. Wednesday another injection and working the arms. I felt pretty good. Usually, once every two weeks I try to go heavy. Since I felt good today, I did a combination: medium weights with step ups and step downs. I figured that the muscle pain I was to endure the next day would help mask the flu induced by the shot. Great plan I said to myself.
Thursday . . . muscle pain and I felt good when I woke up. Except for an hour later when the flu kicked in. Two pills and an hour after that, back to normal. Except for the muscle that I seemed to have pulled in my back that threw it out again.
Dante needed to add another level of hell in "Paradise Lost" because the combination of a thrown back and myelitis is a one that truly should be missed. For those that may be reading this that don't know the feeling of either, imagine the feeling after the pain recedes from hitting your funny bone and all that remains is the tingling all through your arm. I have that from the toes on my left foot all the way up to my rib cage. I have it 24/7. Now, add the pulled muscle in my lower back that pulls my spine out of alignment. Oh, did I mention that even below the layer of fat I have on my stomach, my abs are still strong. They want to compensate for the pulled muscle and clench and pull themselves.
It is my life and something that I've gotten used to.
Every day is different and presents varying degrees of how I feel. Tuesday was back to working out. Leg day. Wednesday another injection and working the arms. I felt pretty good. Usually, once every two weeks I try to go heavy. Since I felt good today, I did a combination: medium weights with step ups and step downs. I figured that the muscle pain I was to endure the next day would help mask the flu induced by the shot. Great plan I said to myself.
Thursday . . . muscle pain and I felt good when I woke up. Except for an hour later when the flu kicked in. Two pills and an hour after that, back to normal. Except for the muscle that I seemed to have pulled in my back that threw it out again.
Dante needed to add another level of hell in "Paradise Lost" because the combination of a thrown back and myelitis is a one that truly should be missed. For those that may be reading this that don't know the feeling of either, imagine the feeling after the pain recedes from hitting your funny bone and all that remains is the tingling all through your arm. I have that from the toes on my left foot all the way up to my rib cage. I have it 24/7. Now, add the pulled muscle in my lower back that pulls my spine out of alignment. Oh, did I mention that even below the layer of fat I have on my stomach, my abs are still strong. They want to compensate for the pulled muscle and clench and pull themselves.
It is my life and something that I've gotten used to.
15 January 2008
Another Day, Another Injection
Not much to report. I felt better Sunday, but was so drained from Saturday, I really didn't feel like doing anything Yesterday was pure hell. I was back to feeling bad. I still had the headache that started Friday night. I didn't sleep well either. The myelitis was making my feet burn. All day I was dreading that syringe awaiting me when I got home. If I felt this bad after almost three days, what was another dose going to do to me?
Surprising enough, I felt better after the shot. The shot itself, still hurts like a mother. I iced up the site for 10 minutes and it still burned going in. My problem is I don't have enough injectionable fat. I was an athlete and still consider myself one. The only fat I have is on my backside and my waistline. Everything else is solid muscle.
Anyway, today, I had the usual joint pain and the "my skin hurts to touch" usual flu feeling. After a couple ibuprofen, I was back to normal. It was just another day, another injection.
Surprising enough, I felt better after the shot. The shot itself, still hurts like a mother. I iced up the site for 10 minutes and it still burned going in. My problem is I don't have enough injectionable fat. I was an athlete and still consider myself one. The only fat I have is on my backside and my waistline. Everything else is solid muscle.
Anyway, today, I had the usual joint pain and the "my skin hurts to touch" usual flu feeling. After a couple ibuprofen, I was back to normal. It was just another day, another injection.
Subscribe to:
Posts (Atom)
