Sometimes I find it strange that I took up hiking. Hiking, by definition, means a long distance walk, and when I decided to do this and was buying a pack and boots and socks, and I thought, “This will be awesome. I’m a new hiker but I can do this.” The truth though is that I had been hiking for a long time before that moment. The truth also is that over the past several years, all I did was hike on this solo trail, determining whether I should keep going forward. Sometimes I hated the path, and I mean loathed it. I would stop, set up camp, and refused to leave. That was a little less than the past three years. July though changed everything. I began to want to pack up my metaphorical tent and take steps a little further. This led to a crossroads.
My crossroads, not necessarily unlike others. As sad as it is, relationships crumble often and truth be told, what I learned from my old shattered life is that I needed to simply sweep up the pieces and move on. Doing that led me to finding myself and reanalyzing the world and truly listening to it. It led me to wanting to stick around, to desiring to take better care of myself.
You may remember in my Let’s Talk About What We Don’t Want to Talk About post that I decided to go on Copaxone, a medicine delivered through an injection. It took me four long years to reach this decision and when I finally did, financial issues plagued me. I’m not going my rant again about healthcare coverage or how I know medicine cannot be free or even how someone is seriously benefiting and taking advantage of the sick and needy… I did that rant before. What I am going to do is move on and pick up where that last post left off…
I ended saying there are companies that will offer financial assistant, and I would like to believe these companies can be found with every disease or illness or health-horror, but the truth is I don’t know. What I do know is I’m grateful that there is one that helps those with multiple sclerosis who are going on Copaxone: Shared Solutions, and I hope someone who is about to start this medicine and is confused or worried somehow finds my blog.
While my health insurance company is helping some, Shared Solutions is essentially paying for my medication. They do have a cap to their help so at some point, I’ll have to throw in a lot of money, but when you talk about the around $5,500 dollars it was supposed to be monthly, they are providing a significant help.
So a few weeks ago, I ordered my medicine and started it for the first time.
A great plus of going through this company and getting on Copaxone is that a nurse comes to your home so that you can go through everything together.
This means, she showed me one-on-one what to do and then I got to practice on a little stressball-thing before doing my first injection with her there. We spent about forty-five minutes going through it all before I had to get up the courage to give myself the injection.
And know what?
It wasn’t that bad. The needle is the world’s thinnest thing.
I had no idea it would be that thin, but the thought made me really happy because it means you can feel it less. In fact, I barely felt it piece my skin. Afterwards, there was a sting (which she compared to a bee sting and I believe that was spot on) that lasted for about 15 minutes… but that was it. Medicine done and over.
I felt really happy moving forward. We had talked about the eight different injection sites (arms, hip, abdomen, thighs) and planned exactly when I needed to do this. I felt prepared.
Since then, it has gone somewhat downhill.
I want to take my meds every Monday, Wednesday, and Friday (which makes it easier because most of the time you are working so returning home and not, for instance, hiking). However, when I took my medicine Wednesday, I had a horrible reaction. The moment the needle went in, there was a loud ringing in my ears, I felt dizzy and about to faint, I was nauseous and sweating profusely. I could barely sit and not sure what to do so I called a friend (To him again: THANK YOU) who came and helped me time when to put an ice pack on the site. Once we finished that, I collapsed onto the sofa and went to sleep. For two hours, just passed out cold… and when I woke, I was fine. I called the nurse later and she said the FDA did approve this medicine knowing that was a side-effect. I also learned only two percent of those that have taken Copaxone have reported this happening. That made me nervous. Plus, they suggested I stop taking it until the nurse could come back out to rewatch me.
Fast forward next week, she came back out and instantly knew what happened. “You’re too thin,” she said and I appreciated her upfront, blunt honesty. Now this is where I’m going to go on a slippery-ranting slope…
There is one thing I cannot stand — I mean cannot stand — and that is when people talk about weight around me. Talk about it as in, “Oh, you’re so thin!” or “You don’t have this problem!” or “I wish I could be thin like you.” (I hate that last one too. Don’t tell me you want to be like me. I promise you, there is a world’s amount of people that you should be like over me… but the one that you should be most like is simply yourself.) I know, I get it — Everyone struggles with weight, but people struggle whether you appear slender or larger. Everyone has confidence issues. But not everyone wants to sit around and talk about weight. I sure as hell don’t. I call the weight talk the Baby Talk — you know the one. When you’re in a relationship or married and everyone wants to know when you are going to have a baby. Here’s the catch though — They don’t take a moment to stand in that person’s shoes. I was there. We tried and tried and tried to have a baby and saw doctors and I took pills and more pills and nothing happened. So when people asked me when I was going to have a baby or when they commented about how I was “ready for a family” based on me playing with a friend’s child… it was not right. If I could have had a child, back what seems a lifetime ago, I would have had a child so any mention of children and why I didn’t have one led me to go home crying that day. In fact, I even remember stepping into a bathroom at one person’s house and just sitting on the floor crying. In the end, I know things turned out for a reason and I’m so extremely — extremely — fortunate I did not have a child then. I’m also extremely fortunate for where my life is right now and what the future holds because it is bright for the first time in my life and there’s promise and I’m so happy at what will come. However, the point to this story is to remember the Baby Talk and do not comment when you have no idea what that person is going through.
The Baby Talk, of course, relates to weight. Again, do not comment if you have no idea what the person is going through. I know I am thin, and I hate it when people compliment me because I have struggled with weight my entire life. All I constantly try to do is gain weight unsuccessfully. I hear many of you now — You don’t see this as a problem, you say. But that’s close-minded and not right, too. If I see you as beautiful (which I truly do), but I can take in that you want to lose weight and that you feel your weight as a problem, I can empathize. However, it is rude if you cannot see the exact same side, just opposite. I hate when people comment about weight because it is disheartening, and it is disheartening because somewhere in the world at some point in time, someone determined being thin was beautiful and being anything other than that but was not. And that’s bullshit. I have seen “larger” people that are more pretty — inside and out than top skinny models. And those models are hurting their bodies every day to get a paycheck because that is what people want to see. And I simply cannot stand when people compare their weight to others based on a horribly dictated notion of what society says is beauty. Again, you have no idea what that person has gone through to look the way they do. People are anorexic and bulimic and binge-eaters so for you to either compliment them when they may be going through hell and should have someone say the opposite is horrible… or for you to not say anything when they need help is again horrible. So America, world — STOP COMMENTING ON PEOPLE’S WEIGHT. Maybe then everyone can gain more self-confidence and accept and love the way they look.
Okay. Thanks for listening to that. I feel better… sooo moving on:
My nurse told me I was “too thin.” This was frustrating on many accounts because I keep trying to gain weight and cannot. Because I finally, after many long years, determined I would take Copaxone and was ready to take it and it’s now not a good fit. Basically, I don’t have any fat tissue and the medicine needs to be injected into your skin/fat tissue. When I tried to inject in my abdomen, we are thinking I went straight into muscle, causing a bad reaction. We analyzed my sites more — my arms, the nurse ruled, out. “There’s no fat; only muscle,” she said. That’s two sites down. “Be careful with your abdomen. It is always dangerous to inject in that area and you have nothing there.” Two more sites to be extra careful with. “You don’t have a lot to work with in your hips. You’ll only have a few rotates at each site.” More sites down because how this works is you need all eight sites to do a “full rotation.” Inside each site, you have more sites — Picture it like a grid:
When you lose either actual sites (those are numbered in the picture) or when you lose grid sites, the more you decrease, the more likely you are going to have a “permanent indentation” in your skin. That indentation isn’t just an inch or so wide. It could be an about nine-inch wide circle. So by me losing my arms and having less grids sites, I’m putting myself at a higher risk of this indentation issue. This, again, makes me frustrated because I’m ready to actually inject myself. I’m ready to actually take medicine to improve my health. I’m ready to actually take steps forward with this treatment plan. But it’s not agreeing with me. I wish someone had said a certain weight or body type is geared towards this medicine. I wish someone had pointed this out before I spent years trying to get to where I am right now. And this is the primary reason why I’m writing this post. Hoping someone out there can come across this and I can save them time because they can now have information they may not have known before.
Additional frustrating information: I was told switching medications with health insurance is near impossible. Not only that, but I’m left able to take the oral medicine — the one I ruled out because it hasn’t been on the market that long and so “long-term data” is essentially coming from people today who are test subjects.
Let’s take a sigh here. I need a deep inhale…
That was better.
So again, the nurse looked me over. We prepared for which sites I can use and which sites I cannot use and which sites I had to use caution. Then, I injected myself with her watching and it went fine. Same sting, same duration, then done.
Since then, I’ve had other smaller symptoms. For instance, my most recent injection felt more like an allergic reaction where my side itched and turned to a red rash.
While anyone would like to take medicine without a reaction, I still feel fortunate knowing it could be worse.
I guess this post comes to a weird sort of unraveled end. I wanted to keep a log for myself of what has been happening with my health, encourage society to stop this insane bs of comparing weight, and give someone insight on my treatment therapy in hopes of helping him or her.
In the end, I walk away thinking about the future. Most days now, I don’t want to know the future. Most days now, I’m absolutely comfortable with being carefree and having things be crazy and uncontrolled. That’s life and it’s exciting. But… there are other days where I would like some type of regularity, something to count on, something dependable. And I suppose that part is simply not right now, which I accept. That part is where we will have to wait and see…