I believe in the impossible.
I believe every person has the ability for the impossible.
Every waking step, interaction, breath, tied up shoe lace, drop of sweat and tear, sleepless night and glorious day – I believe in the impossible.
I think I always have.
“Why not?”
One caveat – hard work and determination must be in play like a wooden spoon churning a good pot of stew.
I am not saying you will get everything you want, you may not get anything you want.
What I am saying is hearts can be broken and put back together. Wounds can heal. Maybe they can’t heal completely, but some good duct tape and love can heal them up pretty good. That putting one foot in front of the other, no matter how tired or how busy, you will become stronger. Physical strength is needed as you get older for better balance, stronger bones and posture.
That if you believe you can you will – and if you believe you can’t, you won’t even bother trying.
I have a lot of proof behind this belief. I also have a lot of scars, and if anyone knows me a little, I have become a big old crier. I can’t hold in all that stuff anymore. I haven’t been able to hold it in the last 20 years, so I cry. I cry over sappy stuff, to sentimental, to things that make me laugh, cough, and then cry. I cry when I am angry. I cry when I am frustrated and afraid.
And you know what – I lost my shit this week. I have working on getting my expensive drug since Feb 28. That is the first call I placed to get the new script.
I have called my insurance company, my doc’s office, my pharmacy, my specialty pharmacy each day over the last two weeks. No one knew who filled it and it kept being passed back and forth, literally. I would call my insurance, they would say one the pharmacy, and the pharmacy would say this specialty pharmacy. I would call that specialty pharmacy and they would bounce it back to another pharmacy.
I have easily made 20 phone calls and close to 3 hours of being put on hold and being transferred to one department to the next.
I have come to the conclusion that getting my medications is as much stress as having CF itself.
On Wednesday I called Children’s to speak to someone about getting the prior authorization and the nurse said “Is this Tessa?” I was calling from a work phone and I hadn’t given any of my identifiers yet. I said, “How do you know that?”
“I have seen your name come up a bit this week.”
Oh gosh.
The nurse was super nice and said for absolute they would send over the prior the next morning. They only received the information the day before. They also have to send some my chart info stating I have the genotype double F508 to get the medication.
My last medication dose is on Saturday. This was Wednesday. I called yesterday, and the same information was being relayed. “Perhaps we have gotten your Prior Auth but I don’t see it updated in your file as of yet. When we do we will send it over to the insurance and go through the approval processes (if your insurance approves it) and then we will set up shipping the medication to you.”
I am not new to this process. Make note – many of the insurance companies and pharmacy processes are just messy as the next. It is like comparing Delta to United, same damn thing. Sometimes there might be a splash of color or kindness that gives one company an extra star over the next, but on average they are the same.
“May I speak to a supervisor?”
“I am not sure what a supervisor can do, as I have said . . . . . repeats . . .”
My blood was starting to boil. I could feel my heart and I was starting to sweat and hands started to shake.
She kept on talking. Mind you – this call is being recorded. I said many things in here btw, mostly I started this processes 4 weeks ago and now I am 2 days away to being out.
Pause: every time I order this medication which has to be over the phone, I can only get a month at a time because of the cost. They have a series of questions and one of them is, “Have I missed any doses?” I have always answered, “No.”
The woman, although I know she probably only makes about $15/hour, said something to the fact, “We want to get this to you as soon as we can for you don’t miss any doses.”
“I-am-going-to-miss-many-doses.”
I think this was where my survivor skills kicked in. It is something to the fact of using their words back at them. By me saying, “I am going to miss many doses” because of their faulty practices I have now become a liability.
To note: besides changing a few things I do at home (adding MN care and altering what I do here) on paper this medication has kept me out of the hospital. Since I have been on the medication I have not had a pulmonary exacerbations. Prior, I was clocking on 1/year the last 4 years.
In studies prior to FDA approval this was the largest marker why it was approved. It did not do extraordinary well increasing patients PFTs, but it did well for increased overall health, reducing exacerbations, and stabilizing patients. This being true for me.
She started over again and again with the processes. This was where my mind couldn’t take it and I went into some sort of autistic cycle.
“IT IS NOT ENOUGH”
Break for a second.
“IT IS NOT ENOUGH.”
She continues . . .
“IT IS NOT ENOUGH.”
Continues. . .
“IT IS NOT ENOUGH.”
Continues. . .
“IT IS NOT ENOUGH.”
“IT. IS. NOT. ENOUGH.”
“IT. IS. NOT. ENOUGH.”
I can’t or won’t get out of loop unsure how many times I said it until she said and sighed, “Would you like to speak to a supervisor?”
“YES.”
I was extremely proud of myself for not swearing as the call was being recorded.
I was put on hold for at least 5 minutes as she got help as she probably told everyone I was a crazy person. That’s fine. What can a person do? I started to cry from frustration and that I couldn’t believe I have been pushed again when I tried to prevent this from happening.
4:00 p.m. a very nice man came to the phone. He was a pharmacist. He said, “What I would like to do is call over to the insurance company and see if we can get a prior auth override and get you a full 28-day supply until the paperwork is worked out. Would that work for you?”
“Yes please. That would be great.”
“Someone will call you back shortly. What is the best number to reach you at?”
4:50 p.m. “Hi – We have gotten all your paperwork and prior authorization from the doctor’s office. The insurance approved of the medication and we would like to ship it out to you and have it delivered tomorrow. Would that work for you?”
“Yes.” All adrenaline drained and am chilled from cold sweat.
5:37 p.m. I get a text that the medication had been shipped.
The medication came today and is now in my possession.
The thing is -they wanted me to start this medication because it is supposed to save lives. It has stabilized mine. Now that I am on it, it seems as if I need it. If I don’t take it over a few days, I am not sure what alterations may happen. I have now become dependent on it.
Each time, I know everything always works out. This time, it was me flying into an autistic cycle. It worked. I didn’t swear. I kind of kept my cool (kind of?) by just focusing and repeating the same sentence.
Do I feel bad for that girl? Yes.
Should she had given me to a supervisor or pharmacist earlier like I asked? Yes.
I am going to send something to my Children’s team.
I shouldn’t have too much of a problem now that very possibly my account has been flagged.
I believe in the impossible. I believe in squeezing in the most of this life like an accordion contracting and then expanding that sound of laughter out as far as it can go.
I believe in the adrenaline draining out of you and onto the floor where sometimes you find a new way to walk because the person you were before is no longer there. A new stronger and direct one has emerged. The one that does not settle or back down and one knows hard work and believing in you is key.
I believe in the impossible.
I believe in the impossible in me.
I would like to see the impossible in you too.