Sunday, 29 August 2010

Letter to the Doctor

This has been driving me crazy now for almost two weeks and you know I can't keep stuff bottled up inside. I left out names (the ones I know, anyway) but this is the letter I just finished to the doctor through Relay Health and I am sharing it with you, my readers, friends and support. Maybe you will avoid this kind of issue.

Doctor,

As I have not have any reasonable amount of sleep since two Thursdays ago when I last came to the office, I may be a little tactless. Not that I am ever anything but obvious about my feelings and opinions on things, but after witnessing yet another sunrise not due to my normal early morning habits but having been up all night... well.

This all began in July. I called in with a message to the prescription to please call in for Ambien. We had just switched from my old insurance carrier to a new carrier and there was no time for me to get a paper script to submit to their mail order prescription service. The order went in and was, incorrectly, filled on the 20th of July.

I don't know if the person filling it ignored my specific instructions left in the message about the dose, or did not check my file or if someone had "an inspiration", but the order was filled for 60 tablets, one per night.

And now I am culpable to some extent here, as well. I went to Barry's, checked the pills to be sure that they were the right ones, but never checked the label to see that it was 60 tablets for one month, at two per night. That makes me one idiot in this story. Not to worry, I show up more than once as an idiot.

So I call the pharmacy automated line to refill the prescription on 19 August and the system tells me that it is too soon to fill it. I called too early in the morning to get live help and the system is notoriously unfriendly and hangs up. I called later, was informed the script would not be renewable until 6 September, and to quote Arlo Guthrie, "there wasn't nothin' we could about it."

I promptly logged in to this site (a good site - this I like) and left a message. However, no one has ever noted me for my patience, so I called as soon as the office opened. And the message was given to you. You obviously know this part, so there is no point in regurgitating that. We discussed options and I came in later that Thursday - this would be the 19th - and I picked up the scripts (I did completely forget about the main one, though, which was Allegra-D. Oh, well). I asked if the Ambien mix up was taken care of and got a hurried and harried answer that all was in order. Clearly it was a little hectic and I left

I trucked over to Barry's, handed them the new scripts and when I received everything, I asked about the Ambien. I should not have been surprised to find out that no one said anything to the pharmacy about it, but they said I should go straightaway to your office and inquire about this. I did. I waited for some time, which I have no issue with - waiting time is not normally a problem there and I was there without a formal appointment, and the staff was really nice in making sure that I knew I'd not been forgotten.

The nurse came to get me and sit down with me. She introduced herself but I am not great remembering names for some time unless the person is on my payroll, because by then I have typed the new person's name 100 times in 20 minutes. Welcome to my world. Anyway, she was explaining that the office cannot call up the current carrier and correct the issue because the script had been filled. There were a lot of other points that came up in the conversation as well, but this one really stuck out. And this is my idiot mistake #2.

I've been doing benefits administration for a long time. Over a decade. And yet, I sat there like an idiot and did not press the issue that this error CAN be fixed. Mistakes happen. Errors occur. That is why you can (with effort and pressing 0 a lot) get a live individual high enough up the food chain in any health insurance company and fix the issue. But no. I sat there and took it.

I'd like the error fixed. However, I suspect the "someone had an inspiration" part comes into play.

Other parts of the conversation included my doctor with the group, and the HR Manager in me is very confident that he has either returned from vacation already and had to endure a "conversation" of his own or is about and then will receive the hand slapping that I can smell in the air. I do not expect you to discuss the aspect of anyone's employment with me no more than I would do it with the employees at my place of employment, but I need to say this:

He has not blindly given me medication or let me bully him around or demand anything from him. He has done nothing but work tirelessly with me (which is tiring in and of itself, I grant you) and try to find solutions to the problem. I've been taking two Ambien a night for a very long time, at least a year, but more likely closer to two. This is not a big secret and it's been in my file. At one point this year, I think late Spring, I told him I'd gotten up way higher than that in search of the full 8-hour sleeping time and he saw me immediately and got me back to two. That was when we began what I call pharmacological grazing to find the right secondary medication to go with the Ambien that will play nice with the other drugs and still allow for a good night's sleep.

This ain't easy.

But we have been keeping at it and I never take more than two Ambien a night.

The nurse suggested the Tizanadine at night would go along way with this. I was already going down that road, but uncharacteristically again, I did not say anything. Here is the problem with this. Tizanadine is a wonderful drug. Taken at a light dosage with breakfast and then with lunch it is perfect - I stay awake but that with half an oxycodone ensures no pain and almost no tightness. At dinner the dose is higher and I nap because it will make one tired. But it is a solely food-driven drug. Taken without food, it takes the edge off the muscle cramping but does not initiate napping. Taken with sugary foods or after a full meal, it works the same way. Taken within a meal at the highest dose is just right.

That sounds easy - just take it with food before bed. Well, guess what. Part of the reason I reached my former panoramic weight was from just that - eating right before going to bed. And since Tizanadine only allows for a three-hour nap, I awoke at 0100 and had to eat something substantial (a mere snack won't do it) and go back to sleep again. Please tell me where this sounds like a good solution. I have regained a considerable amount of lost weight due to this and trying to eat sugar during the day to stay awake.

I am not diabetic yet, but I am careening down that road faster than I care to think with this current problem. Sugar is my problem thing. (You know, some people are gotten by cake, some by chocolate, some by a meat-heavy diet, and I am the one jonesing for Smarties and Starburst - the real I'm-not-into-wussy-sugar type candy.) When I get off the sugar my weight goes right down and it's wonderful. But it has crept back up.

I have Muscular Dystrophy. It won't go away, it won't get better, and I can't stop the complete progression (I do what I can to slow it down, but I know I can't stop it). There is no cure and no palliative. There may become a cure, but unless it happens in the next ten years and/or before President Obama's disastrous health care reforms go through, it won't be available to me. I watched my mother give up on living because of this disease and I do not want to be my mother. My mother who is now a total invalid. I am asking for one thing and one thing only. I want to work. You have been to where I work. You know how much magic that is. This is the last job I will ever have. I won't survive the kind of stress it is physically and emotionally to find work in this day and age. I need to make it to 2017 and then I will go down the Disability road. (Hopefully not that soon either but that is my goal.) And I want to make it to ten years and life member status on the ambulance squad.

So I get the feeling that you want to not have me see my doctor, which I object to greatly. He is an intelligent, warm & fuzzy person who is not merely the guy helping with medical issues but is fun to talk to, listens - really listens, not just that sort of "I hear you but I have 5,000 other patients and you are just wasting my time" listens. And I really ideally want to return to two Ambien a night. Unlike the average patient I DO understand the drugs and the potential difficulties I might face with my liver. I get it. But for 42 years I never drank (all alcohol tastes bad to me), smoked anything, and up until 5 or 6 years ago, never used medication. So my liver is not only in good shape, it owes me. And I want to keep working, something I cannot do without sleep.

I will await your response.

Aislínge

2 comments:

CrystalChick said...

What a mess! I'm so sorry to hear you've been having all this go on. There have been times I've had trouble sleeping so I can only imagine what it would be like to have to deal with that constantly and now not be able to get enough medication to help you.
I do hope this all gets resolved quickly!

Thinking of you! xo

Kittie Howard said...

Wow, what a story! I'm sorry you're caught up in all this, can hear your desperation to sleep a full night, have a normal day. I wish I had a magical wind and could grant your wish, for it's not a complicated wish. Like CrystalChick said, I hope this gets resolved quickly. Hugs!