Sometimes I want to get on a train and disappear. Just board a train to anywhere, board it simply for the sake of riding it. I imagine traveling on it and traveling, passing trees and rivers and hills and acres of land, cows, horses, cities with skyscrapers, people brushing past one another to work, Greyhound buses passing, passing, passing vehicles and everyone, and I’m passing, passing, passing it all, gliding by like this picture, which I took long ago with James.
We went to Luray, Virginia here. I may have blogged about it before; I don’t remember . . . but don’t think I did. Anyway, he was driving and we were swirling around the mountains, up and down them. It felt like licking ice cream in a cone, which I know sounds odd but it felt smooth and constant and dripping, like we were dripping and slipping up and down the mountain at the same time. I love it when he drove because I would rest my head against the frame with the window rolled down and just watch, watch the way the trees looked swirling by me.
And soon, almost right away, it gets hard to breathe, the wind suffocates me, pushes against me and closes my airway . . . but that’s the second it feels right — that’s when I have to gasp for breath and realize I’m alive. And in that moment, I feel so tiny, almost insignificant as I twist, we twist through the vortex of bending, flying trees. It is one of my favorite feelings. It feels free and open and wild and reckless . . . while still safe.
That’s how I want to feel now. That’s how I wish I could feel on a train with the window down as I gulp in air, trying to breathe, the world swishing and whirling by me.
I got a call from the nurse practitioner who had the results of my MRI. I was surprised it came so soon as I expected to get them back in three months, but I guess that’s the time they want to meet face-to-face and actually show me the results, a visual model at hand.
Let’s back up first to my MRI. I had to have more liquid work done, which was surprising because I thought I was just in for an MRI.
Still, my MRI itself was much better than the first. Sadly, the meds I took to calm me down didn’t really take affect so I was still a mess but not a sobbing mess as before. Now, I know when to close my eyes (the moment I lie down) because I knew about the Silence of the Lambs Head Thing and I knew not to open them because I’d be in the smaller-than-coffin-sized MRI. AND they even let my mom come back upon first request so I didn’t have to fight them. This meant my mom was in there the whole time talking to me; that was a huge and majorly appreciated distraction. Oh, and the MRI crew was awesome. I asked if they could tell me how many scans I had left and the times so they would say, “You have eleven more to go. This one will be two minutes and twenty-three seconds.” That probably helped the most because, as I told them, I’m fine knowing I have fifty million scans as long as I know they are only a few minutes each. Tiny time portions are key.
Anyway, now back to the nurse practitioner’s call. First, she wanted to know how I was doing: I no longer have the major numbness, just slight numbness around my left collarbone. I also no longer have that horrid internal itch but I do have a rash-type-of-bumps that have developed more noticeably last week and those little suckers do itch. Luckily, the itching on that has gone down, too.
Therefore, because my symptoms are decreasing, she said she did not want me to have a dose of steroids; steroids have their own side effects. Further, she recommended me see a dermatologist if the bumps don’t improve because while it is more than likely MS-related, it is directly on my skin and not inside with my nerves so the derm may be able to help.
As far as my MRI results, they weren’t really good . . . but that’s expected. She told me according to the MRI I had in November 2012, my previous lesions from that time have diminished in size. This is positive because as time goes on, those lesions in my brain are not as prominent now and they have become smaller. However, the bad news is that the damage was still done and they are still there. To add, she said my recent MRI shows five new main lesions, one of which is “enhancing,” meaning it is active. This, she told me, did not surprise her based on my symptoms. Still, compared to my 2012 MRI, this indicates that my lesions are mild to moderate with increased activity.
This all adds up to, as she suggests, a “more defined therapy,” and let’s be honest, I have put off medication so this truly means some type of “therapy.” She, like all doctors before her, suggests Copaxone. Copaxone is medicine administered through daily needle injections, but it is described as “more friendly” because Copaxone hops up to you smiling, shakes your hand, and gives you a hug after injections. No, just kidding. That would be awesome. What it does is simply exist for twenty-plus years so the short and long-term side effects are known. Not only this, but if I do ever want a family, it is “more friendly” for that also. However, she said since I have a “needle phobia” she realizes this may not be the best route and, since needles are required regularly, she worries I will not do it . . . which means not taking any medication and if that happens “there is no point or use.” Blunt words; I like her. Because of this, she said she would recommend me think about what “disease modifying therapy” I would like. She again notified me that I could take daily pills but warned once more there are absolutely little to no studies done and she would not recommend them if I ever wanted to start a family in the future. And who the heck knows what the future holds — Anyone? Anyone . . . because this would be helpful right now. So, simply put, I would be a lab rat. No one has any idea how the medication will affect themselves, their bodies, or any fetuses if those people became pregnant.
Lastly, she ended the conversation saying she would share the results with my doctor, who will be returning to the office this coming week. She said he would more than likely want me back at the clinic to talk with me and probably recommend “several blood tests.”
And . . . that’s where I’m at. At the same point I was three years ago . . . except without James . . . and without the factor of rushing to try to have children . . . and therefore putting off medication. Now, it’s like I don’t have an excuse. So . . . what do I do? I do realize I need medicine. And that’s completely terrifying to me. I don’t know why either. I’ve taken daily medicines before and simple medications whenever. I am not at all against medications. In fact, I like them so much that I’m pill-popping or slurping-liquid-meds happy. So why do these MS medicines scare me?
And, which one do I take?
I’ve done more research since the last time I really researched which was in 2012 when a pill was just brought out on the market. All of the below information comes from MultipleSclerosis.net.
Let’s start at the beginning again. Doctors believe I have relapsing-remitting MS (RRMS), the more common type of the disease. This is when relapses, which are flare-ups or attacks, happen where my “neurologic function gets worse.” After these relapses, there are periods of remission, which is partial or complete recovery. During this time there is no progression of the disease. This chart (and other charts and facts below) shows a recent MS in America 2014 survey. It was completed by over 5,000 people. This one has stats on how many of them simply have RRMS like me.
Because I use my blog as a sort of diary, as a way for me to keep my health records and health facts straight, I wanted to include this chart for myself. It breaks down the symptoms RRMS. This means I can expect this to come or I have already experience this or am experiencing this right now.
Now to the pills or “oral therapy,” as they refer to it. There are current on-going studies to determine what these pills do: What are the side-effects? Do they truly help? Do they help more than the shots? If they help, how much? Scientists and MS specialists are working to figure out those answers and more.
Looking more closely at those with relapsing-remitting MS, it appears they still prefer or are taking needle-needed medications.
It goes on further to say, “While infusions, interferon and other injectables are still used by the majority of MS patients, . . . oral medications for MS are used by almost a third of patients, and over 50% of people using injectables are considering switching to an oral.” I thought that was an interesting fact. Half of the people surveyed are considering switching. That means if they do, it would be 65.5% on oral therapy versus 34.5% on “other.”
But how did those on the medications feel? The survey showed this: “About 50% of people using oral medications found them to be definitely or a bit better than injections, while 41% found them to be about the same.” That equals 91% of those on the pills found them better or the same as shots. That’s good news. Meanwhile, “A majority (58%) of users of oral medications found their oral medications to have better tolerability (side effects) than the treatment they were on previously.” That’s a little more risky, about half of those surveyed feel one way; the other half, the opposite way.
So why did those people end up on the pills. This kind of answers that question.
I do wonder what the 32% of “other” means. However, for almost half, they appear to be in the same boat as me: They do not like needles. As comforting as I thought that would make me, it doesn’t. I want to know the pills were taken for good reasons, not just out of fear or because people felt there was no other place to turn to — which is how I feel. I want to know these pills are safe and that they will help, not hurt. I want to know people taking these pills are happy, they will stay happy, they will be okay. But I’m never going to get those statistics. Not now and not in the next few years. It will be once my generation passes that we will learn the truth. It will be once people like me just step up and pop the pills. It will be when people like me are essentially lab rats.
. . . and so on that note, the end. I don’t know what medicine I’m going to take. I don’t know what I’m going to do. And I don’t want to leave you like this either. I don’t have anything else to say though. I feel absolutely confused, just like I did when I was first diagnosed. I even reached out on the website for help. There’s a place where you can have conversations in forums and post questions or concerns on MultipleSclerosis.net. I posted one about medication. I wanted to be able to ask people questions, put faces to numbers that are on “Injectables Versus Pills” surveys. So far though, no one has answered my “Medication Help Please” request . . .
It’s strange. We are so incredibly far with technology — finding planets practically better than Earth to creating condoms that change colors when there is an STD — but there’s not more information on this. That pills weren’t created earlier for those with MS. I know people are doing the best they can and working their asses off for answers and solutions for people like me, and I feel horrible, guilty wishing the work could be done even faster. It just sucks more money isn’t given to funding huge research like this — for MS, for all types of diseases and illnesses and well, shittiness that people have to live with. ALS can blow up — blow up — and get a major boost in funding bringing about huge scientific research for cures because some brilliant person decides to pour a bucket of ice on him or her and boom! You all do, too. It’s awesome. I’m truly happy for that news for those with ALS, promise. And we have so much pink out that no one can even blink without being aware of the tragedies of cancer. Lots of funding there, too, and that’s good. It is, and I’m not downplaying any of that either. I am happy that that has happened. That’s good news; we need good news. But what about the other millions of diseases? What about those that have little research and funding? Who is talking about that? My point is this is what we focus on, this is what we talk about: Facebook can blow up with stupid viral videos of old not-even-good movie clips with the words “Bye Felicia” and deep debates on the color of a dress can erupt and people can bitch about our government as those running constantly say bigoted, racist remarks while still being handed a microphone . . . but practically nothing is being done to actually help anymore. That’s how I feel. Most of the time, nothing is being done to raise awareness. To find answers. To . . . help.
I’m trying though. Sometimes, I don’t feel like it is ever enough.
So that’s it. My diatribe ends there. Not because I want it to but because I’m turning more negative and I’m cussing more and my family hates when I do that so I don’t want to have to listen to how I need to find every cuss word and put in a polite almost politically correct cuss — or curse — word instead. I realize I should go.
But hey, as always, I’ll keep you updated with more. I hope my cussing — damn it, cursing — didn’t turn you off. I’m sorry if so.
. . . And hey. Most importantly, thanks for stopping by again. Thank you for listening.
For more information on the disease-modifying treatments discussed, visit the company’s website:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.