15 Minutes. We spend weeks upon weeks waiting and getting referrals for 15 minutes.
That’s our time cap.
I wait to get reacquainted with my old neurologist. I come prepared with charts and spreadsheets and medical records and my migraine journal.
I don’t want to spend my 15 minutes going over that information, because that information is what pushed me to have the appointment in the first place. That information will be read over after the appointment.
He wants to know how I’ve been. *insert as much medical garbled history as I can remember and that seems relevant*
Let me break down the process I went through before quitting my job. Then the process before withdrawing from school.
Because, I’m here to talk about getting his approval for filling out disability paperwork. So, not being able to work or attend school seem like what I should focus on.
But I need to mention that I was denied Botox and SPG blocks.
But I need to mention I’ve started Aimovig and how that is going. (its been 4 days… it isn’t really going)
But I should mention massage therapy. And my nightmare with the chiropractor that led to 3 months of physical therapy for my neck.
But. My 15 minutes is up.
I scramble as he’s prompting me to get up, saying we’ll have a follow up appointment in a month. I’m desperately looking at my sticky note trying to pick out what needs to be said still.
I remember to inform him that I had blood work for Celiac testing so he should be on the lookout for those results.
And just like that, I’m scheduling my appointment for next month and I’m out the door.
Now lets just pause for a second.
IN WHAT WORLD IS 15 MINUTES AN ADEQUATE AMOUNT OF TIME FOR A FOLLOW UP APPOINTMENT AFTER AN ENTIRE YEAR, REGARDING A COMPLEX MEDICAL CONDITION?
Apparently this world. But it isn’t.
Is it really such a hard thing to request that I don’t have to rush through my list of concerns?
Would it be crazy to not have to spend hours prior to my appointment narrowing down my list of concerns to a few key points?
How is that real medical care? Shouldn’t I get to touch on all of my concerns?
Where is the options to say, Hey, I really need a 30 minute appointment.
In the ideal world, this appointment would have gone much differently.
I would have been able to walk him through what happened when I went off my medication in January/February (as this is the last time we talked, I reached out to him for advice on the matter) and discuss the struggles that occurred over the Spring semester prior to seeing the headache specialist.
I’d get to go through how the medication overuse headache diagnosis and discuss the different meds that were tried and that the naproxen I was given to replace my fioricet, really didn’t work. But hey, I’ve successfully managed to dramatically reduce how often I was reaching for medication. Then I’d touch on how Botox and SPG were denied by insurance for various reasons.
After all of this, I’d be able to discuss massage therapy and my physical therapy and the concerns that came from each. I’m hoping to resume massage therapy here, but everything is so expensive it may take some time. But physical therapy brought up concerns regarding my spinal cord and there needs to be conversation about visiting a spine clinic or something of the sorts.
Finally, I’d describe how dramatically my migraines were interfering with my life and how most days, I can’t get out of bed, and if I do, I end up spending the day on my couch not doing much. Which brings me to the conversation about disability.
I almost cried in the office as he said that he didn’t think disability was an option. He was so goddamn optimistic about the new migraine drug and had high hopes for it working. He mentioned how I wasn’t the type to live off of food stamps in some trailer park. He said I needed to fix my attitude on my condition and not lose hope.
I haven’t lost hope. I just recognize that I can’t work and I can’t go to school and if disability can provide a small amount of income that would be huge for me. Disability can also discharge my loans and in the state I’m in, I’m in no position to pay them back.
So. We had that conversation. He doesn’t believe its the right choice. Maybe he wants to pay my loans.
Some of these topics were touched on briefly. But what about the things that didn’t even make my final list?
I need a refill for my daily medication.
I’m interesting in acupuncture and need to know if there’s something within my insurance’s network where I could go.
There’s a new pain clinic at MUSC. I want to know if they at all deal with headache/migraine.
Something needs to change with my medication. Maybe it is best to wait to see how this Aimovig works, but talking about a plan shouldn’t be out of the question.
I need more than 15 minutes. I need more than pure optimism when it comes to this new medication. I need to feel as if my doctor will stand behind my choices. I was once again confronted with the idea that I’m young and enthusiastic and have such a great mind that I deserve to be out able to use it.
Yeah sure that is true, but shouldn’t I be the one deciding how I use it? This blog has provided so much for me. I’ve rediscovered this passion I’ve had for writing, and have found a way to put my words to use.
This is something I can do, even if I am unable to work in a “real job” but aren’t there real writing jobs? People read books, so surely people must be writing them.
Yes I’d love to be a miracle case where this new drug fixes all my problems and gives me my life back. But, I shouldn’t be made to look stupid for accepting that I need to reconfigure my life to work alongside this condition in a way that I can still be happy and fulfilled.
Which is why I need more than 15 minutes. You can’t convey everything in 15 minutes.
Please take note of my feature picture. One of my lovely friends is an artist and I purchased this piece from here a few months ago. It just really spoke to me because with the way my life has been so crazy these past couple months, I realized that “it is ok to not be ok” and then out of no where she made this piece. She is extremely talented and I’d love for you to check out her facebook page (link below).
|Custom Artwork Courtesy Grace Ann Jacinto Diaz
To see artwork available for purchase and past artwork, visit her Facebook page!