Stuck: I’m Angry but Tired
My health is all about money
I recently spoke about how I was relapsing and my neurologist ordered me (an alternative to steroids) “STAT” and here I am 5 weeks later… still no meds. Granted, after 4 weeks, my neurologist’s office finally got the forms (FULLY filled out this time) sent to the right pharmacy, so now it is in the hands of the people who actually have the medication and who are now trying to determine my fate; is my health worth the money to them? That is all I am waiting on. I’m not waiting for someone to decide whether or not it is medically the best option for me; no, I am waiting on my insurance to decide if they want to spend the cash on me. That is a GREAT feeling, isn’t it? My health has monetary value to someone.
The path to recovery
I am trying to move forward, trying to move past this relapse so I can work on fully recovering and further bettering my health, so I can get stuff done and live a more productive life. But the “train” that I am on that’s trying to take me down the path to recovery? The train trying to move past the “relapse stop”? It has come to a screeching halt and is now just sitting at some random station in the middle of the desert. It’s totally ready to keep going, the conductor is impatiently looking at his watch wondering when he will get the go-ahead to fire up the engine again, everyone onboard is twiddling their thumbs and staring out the window at the stationary platform, all because Mr. Richie Rich (not you Macaulay Culkin) hasn’t decided if the train deserves the fuel it needs to advance. Money, money, money. Paperwork and money.
Red tape and road blocks
Over the course of this almost hopeless endeavor, I was losing my mind, but then I thought about it: this is not the first time this staff has stood in between my neurologist’s orders and me actually getting my medication. It’s a reoccurring theme, and I’m starting to think that I can’t be the only patient there dealing with this on a regular basis. I know life with MS comes with many bumps in the road, sometimes even huge potholes, both due to the disease itself and all the red tape in the medical industry. But the situation I am currently stuck in is beyond that.
A moral obligation to tell my neurologist
Even the representative assigned to me by Acthar doesn’t know what to do! So, I would argue that because my neurologist’s staff can’t seem to handle their clerical work, they are keeping me from getting the care I need to stay on top of my MS. They are setting up roadblocks along my already bumpy road, along my path to overcoming MS. This is something that I now feel I have a moral obligation to bring up to him because what if there really are a bunch of other people under his care dealing with the same thing, and he doesn’t know about it? You see, it doesn’t matter how great of a doctor someone is because if their staff is standing in the way of their patients getting the care he/she is trying to give them, then more harm than good is being done. MS is already hard enough for us to deal with as it is, we don’t need anyone to make things more difficult, we don’t need anyone to get in our way.
MS has knocked me down
So I am angry… but I am also tired. My level of fatigue has been off the charts, and I can’t seem to think my way through the extra thick brain fog I have been waking up with for about 2 months. It’s so hard to decide what the best thing to actually do is. I also often feel really weak which all causes me to not want to get up and move, not want to do anything but lie in bed. I am sure a lot of you know that NOT moving is not good when it comes to MS.
A vicious cycle has started
Also, depression. Lying in bed all day is actually making me more tired, and it’s definitely giving more firepower to my depression which makes me want to… lie in bed. A vicious circle has started, and though I still try to get up, stretch, go for a walk, and do some light exercises, I can never maintain it. I always end up back in bed. I lie there and think about all the things I should be doing, all the things I want to do, all the things I am going to do… tomorrow… tomorrow…
I have MS but MS doesn’t have me
I can remember a few years after my diagnosis deciding that I would never let anything stop me from overcoming my MS, no matter how bad it got, I would always persevere. MS would not take me down! But then I look at myself now. I am not living, I am surviving. I know there are many people who are way worse off than me, who would kill to be in my shoes, but that doesn’t change how I feel.
Figuring out the first step
Every day, when I wake up, I am only trying to plan on how to make it to the end of the day when I can go back to sleep where MS and depression do not afflict me. I don’t have MS in my dreams; I can do anything I want without fatigue weighing me down, my vision keeping me from driving, my balance keeping me from running, or occasionally, reality keeping me from flying. But I truly believe I can get back to a place (at least close to it) where I don’t have to be asleep to enjoy those things anymore. But in order to get there, I have to figure out how to get some of these roadblocks out of my way, I have to figure out how to get this train moving again with or without the help of traditional medicine. It’s all about taking the first step, as well as figuring out what that first step even is. But right now? I’m tired…
How often do you encounter “roadblocks” or “red tape” when battling your Multiple Sclerosis? How do/did you overcome it all? What advice do you have for others who may be going through the same thing and feeling rather hopeless?