When I was a kid, I would play barbies for hours on end. I was barefoot all summer long and rode my bike till the streetlights came on. I would catch lightning bugs and make houses for earthworms and potato bugs. I dreamed of one day becoming a marine biologist or a veterinarian. My biggest stress in life was getting a bad grade on a math test and my dad finding out and grounding me. Which happened quite a lot. Believe it or not, algebra still gives me the heebie-jeebies.
Skip ahead 30 years and I am in a doctors office trying to fill out what looks like a larger version of a Staples receipt. Pages and pages of information. It was overwhelming to say the least. After a while my hand started to cramp up and the pain set in. My boyfriend had to fill the rest out, while I sat anxiety ridden waiting for the doctor.
Knock. Knock. A nurse enters and says we have to do a few tests. She brings me out to the hallway and told me to stand at the line of tape on the floor and to read the eye chart. I literally said out loud, holy shit that’s far! It was like looking down a long hotel corridor. I could only read the first 4 lines. You would need binoculars to read the rest. She then told me to walk as fast as I could from one tape line to the other tape line on the floor, which was approximately 20 feet. It took 6.7 seconds, which she said was good. We went back into the exam room and she handed me an iPad with a memory test on it and told me to finish it. She returned a few minutes later to retrieve the test results. It was a breeze. Although, I had two more answers to fill out before it abruptly ended.
The room we were in had a large window that overlooked the parking lot and a side entrance to the MS wing of the hospital. As we waited for the doctor I watched other MS warriors walk in and out with canes and walkers. I wondered if I too, would need one permanently in the future. I had so many questions that I actually typed—more like pecked, three pages of my daily symptoms I was experiencing since leaving the hospital. It took what would normally take 10 minutes, almost an hour to finish. I even faxed it to the doctors office the day before and called to confirm they had received it.
Another knock on the door. It’s Showtime! The doctor enters and introduced herself. She asked me a few questions and we reviewed my typed notes. After about 10 minutes she said she wants to start me ASAP on Tysabri. I need to come to their infusion treatment center once a month and be hooked up to an IV of this drug for one hour. I was told that I would have to wait an extra hour before I could leave to make sure that I don’t have a negative reaction or any bad side effects. I asked, for how long? She said, for as long as it is successful in stopping the progression of this disease and preventing new lesions from forming on my brain.
Just great—-I was just handed a life sentence without parole, my cell mate being an IV.
She continued and said. I would have to come in for an office visit every 3 months and come in every 6 months for a brain MRI. I said, oh that’s not that bad. As long as it is just one scan—I was in there for an hour and 20 minutes at the hospital. I thought my heart was going to blast out of my chest, like the movie Alien. She looked me dead in the eye and said, it’s an hour long MRI. My mouth hit the floor. I might as well get used to the “hell coffin.” This is turning into a real nightmare scenario.
She prescribed me Gabapentin for the pain that has taken up residence in my body. Normal pain killers such as Percocet and OxyContin do not work with this type of pain. When I was in the hospital I had one major pain attack, mostly in my head and upper neck. They did an IV of OxyContin and I literally said to them, this is it? When is it going to kick in?! It did absolute shit. It brought my pain down from a 9 to a 7. Finally the neurologist that was my doctor in the hospital gave me a Butalb. In two minutes my pain was dramatically reduced. I said, f*ck the pain killers, I want this from now on. So as you can tell, I was extremely eager to try Gabapentin. At this rate, I would shove crystals up my ass, stand on my head and spit out wooden nickels if it helped my pain. Now that would be a sight to see!
It was a lot to take in all at once. My boyfriend literally took every piece of literature they had in their office. By the end he was carrying out a 5 pound stack of brochures and catalogs. I forgot to mention through this whole ordeal that he only has use of one arm. He had shoulder and bicep surgery a week before all of this happened. So as you can imagine, it’s been rough to say the least and comical at times- as I’m sure you can also imagine.
I scheduled my three month doctor visit on the way out and we met my Mutha F*ckin MS Warrior squad in the lobby- aka my dad and stepmom. I am super grateful that they came with us and were there to support me. It is crucial to have a great support system. I am one lucky woman.
Now—-Off to the pharmacy! 🐎
I hobbled up to the counter to pick up my prescription and low and behold they said there is an issue with my insurance. Say whaaaat?!!! You have got to be f*cking kidding me! I was just on the phone with them two days prior making sure my coverage was in place. And she said, YES! I even asked them what my insurance covers in regards to physical therapy. They told me 30 visits a year- physical and cognitive therapy combined. Which is shitty. That’s not even one time per week.
Is this some kind of sick joke the universe is playing on me?! I am starting to think someone put a voodoo spell on me. Seriously. I forgot to mention my family and I also found out on the drive to the doctor that my amazing great aunt Mary passed away. I didn’t even get the chance to process it yet. My world was crumbling down around me and I am standing in the middle of the pharmacy yelling on the phone at my insurance company.
My insurance company has been trying to kick me off the past few years, because I am the only one on it at my work. I am also the Human Resources woman who handles this. I wear many hats at my job. Every year I have to fill out audit paperwork and send it back to them. They want everything— tax reports, your first born child, wage reports, so on and so forth. I thought I filled it all out, hence my “check up” call. But apparently I didn’t sign and date a few forms, so the risk department canceled my insurance. The woman on the phone tells me, the person at your job canceled it. I said, I AM THAT F*CKING PERSON! AND I SURE AS HELL DID NOT CANCEL IT! After a few minutes of her frantically calling different departments, she tells me that she is emailing me the forms and that once I sign and date them, they will reinstate my coverage. I will have no lapse in coverage and I will be reimbursed for what I payed out of pocket for my prescription. The pharmacy helped me out and put in some card, so it only came to $24 for a 90 day supply. Not too shabby. But what a major pain in the ass!
I wish I could go back to a much more simple time of running barefoot in the summer and catching fireflies; not having a care in the world. But this has taught me one very valuable lesson—never take things for granted. Even though people may be smiling on the outside, you have no idea the pain they are experiencing inside. Everyone is fighting their own battles. The world needs more kindness AND Medicare for All.
By the way, I had to have my boyfriend tell me how many seconds are in 2 hours. I wasn’t lying when I said I was bad at math.
I’d Rather Be Dancing 