I'm sure I can't be the only one who is having these problems.
There have to be others of you out there, fighting back the anger, tears, curses, screams of agony.
You might be afraid to come out of the shadows and talk about it, and I understand why you would choose to hide.
I'm talking about dealing with the Bermuda Triangle of Medicine:
1. Getting past the office staff to see or speak to the doctor.
2. Getting the doctor to agree to write you a script for the medication needed and for the amount needed.
3. Getting your insurance and your mail order pharmacy or retail pharmacy (I don't judge) to actually fill the frippin script in a timely matter, without confusion, mistakes, or having to call them everyday to speak to someone different everytime, which means you have to retell your story again and again and again, only to have the person tell you that they have solved all of your problems and also fixed world hunger on top of it.
Then you wait. And you wait and you wait and you wait.
After a few days of waiting with no reward at the end, you call again, only to find out that your script is not, in fact, in the mail as the previous fourty million people had told you, but this new person is going to solve all of your problems and end the war.
I feel like I am fighting the biggest battle of my life here. It's not the MS monster, it's not bullies at my childrens schools, it's not the economy, it's none of the things that should be a battle for me.
I am fighting my insurance and my mail order pharmacy because, even though I have been diagnosed for almost a year now, they still don't see the need in some of my MS medications. And I'm starting to get to a point where I don't see the need in having to explain why I need these medications to every Tom, Dick, and Shrilankitalutaria in India.
I understand that medications, such as Provigil, are outrageously expensive and, if I were the insurance company, I probably would want verification before I dispensed them to everyone and their brother too.
But I've done all of that. I have verificated until I thought my head was going to explode.
Yet, every time I call to order my refill, the battle begins again.
Maybe it's because the insurance companies know that people with MS tire out easily, especially if you don't send them their Provigil, and they're hoping that we'll just get so tired of fighting that we'll stop.
Little do they know that, while I may be exhausted, I am also extremeley stubborn.
I also hate to lose.
And I like to to have the last word, even if it's in a language I don't understand, I'm still crafty enough to make something up.
Don't get me wrong, I know how lucky I am to actually have insurance and that they do, eventually, cover my meds. I know people who do not have insurance and are now fighting "The Man" to pay for their meds.
I'd rather fight with someone in India whom I can't understand than fight with "The Man".
My point to all of this is.........what was my point?
Oh, right! Now I remember.
My point is, why do we all have to fight?
Why is every step a battle to win or lose?
And why is Provigil so freakin expensive?????
I guess my problem is this: Everyday I have an "Ahhh-Haaa!" moment where I realize that my MS is here for the rest of my life. I don't know if those moments will wear off in a few years, when all of this isn't still new to me, but I have been diagnosed with MS for almost a year now and I'm still having those moments.
It may come after a fall or on a day when I'm in a tremendous amount of pain. Other days it might show up when I'm walking around in circles because my memory is so bad that I can't remember anything that I needed to do.
Maybe it's the moment that I have to tell my daughter that I can't go with her as a chaperone on her field trip this year, even though I've gone every year before, because I can't walk as much and I can barely keep track of myself, nevermind five children that are not mine.
The look on her face and the tone of her voice when she said "It's ok mom, I understand." is an "Ahh-Haaaa" moment that hits you like a slap to the face.
But now I find myself wondering if living with MS for the rest of my life also includes fighting with my insurance company and my mail order pharmacy for the rest of my life as well?
I'm willing to go into battle for a lot of things: my husband who didn't plan on taking care of me at 30 when he married me at 20, my kids who don't deserve to have a disease come in and take their mother away, and even for myself because I once was, still am, a person who was involved with my childrens lives, who loved to laugh, who kept having ideas for books she was going to write, who loved to read romance novels constantly. All of those are worthy reasons to go into battle.
I just don't know if I'm up for battling the Bermuda Triangle Of Medicine.
How many of you out there have the same problems?
Please tell me that I'm not alone in this!