Well, due to the fact that this blog of mine is called MSFMS and not MSFDD, you probably were able to discern that the cliff-hanger wasn’t much of a cliff-hanger. After all, MSFMS stands for My Story Fighting Multiple Sclerosis. So, no, I didn’t have Devic’s disease. Actually, come to think of it, I wouldn’t have called it MSFDD. The more clever title would be DDVDD. Doc Downs Versus Devic’s Disease. But that’s neither here nor there. Luckily, I didn’t have Devic’s. Small victories, right?
So……there you have it. That is pretty much the story of how I got from there to here. So now we disembark the rollercoaster of diagnosis. Unfortunately, we get right back on a different ride. This one has no disembark in sight at this time. This one is the ride of living with MS from now until…………..well, not to be morbid, but the truth is, until I die, or someone comes up with a cure. That’s the simple fact of the situation.
From here on out, since no cure is in sight for the seeable near future, I have to figure out how to move forward with this cloud of MS following me with every decision for the rest of my life. I, and everyone else who faces this challenge, can’t do it alone. Assistance and understanding from those in our lives is a necessity. This seems simple enough, right? Unfortunately, often it’s not simple. Why? Well, I’ve sung this refrain many times before in this blog, and you’ll hear the familiar tune many times to come. So little is known by the expert doctors and scientists studying MS, and MS effects everyone stricken with it differently. It’s no wonder those closest to us sufferers don’t really know what to do to help, or even how to act around us. Hell, I’m not even sure at this point!
I don’t want anyone to treat me different, until I need or want them to make (Crap. I had the word I wanted to use here in my head a moment ago. Where has it gone? I’ll move forward and come back to it when the word decides to return to my Swiss cheese thought process.)…..adjustments to their approach. (By the way, I had finished the rest of this installment, had a shift at work, and had gotten a nights sleep before the word finally came back into my mind. Frustrating.)
See. Confusing. Even to me.
There are a few things that do get under my skin. These situations are difficult to maneuver through. I know people mean well, but how do I tell people I appreciate their concern, but that they are going about it all wrong? I don’t know the best way to do that. It’s something everyone who is at the center of this storm called MS has to deal with. I’ve decided to use this blog and hope the word will spread from my ‘eye of the storm’ perspective.
Before I get started, I want to make it perfectly clear that I appreciate everyone’s concern. We are learning how to deal with this together, and I just want to give you insight from an inside view. Ok, here we go.
Due to the fact that our energy is greatly reduced thanks to the fatigue, we get a lot of time to research studies online. We keep abreast of the progress pretty darn diligently. After all, our lives are on the line, here. In my case, since I have joined several online groups, info usually shows up in my inbox straight from the sources. Therefore, if one more person sends me a link to another study that has possibly found a breakthrough in fighting MS, I might have to strangle a kitten to release my frustration. I don’t want to do that, but that is the reality of how many times a day I get a link sent to me.
The recent story of the Canadian researchers using a stem cell treatment is a perfect example of this situation. Most of the time, it’s pretty clear that the sender of the link has only read the title and not the whole article. I can tell this is true because when I respond to the sender with the fact that, yes, I have seen it and yes, it’s promising, but it’s frightening at the same time, they don’t understand why it’s frightening. They see, due to the title of the article, that the process has totally eradicated the symptoms and calling cards of MS. The thing is, the kind souls who have concern enough for me to keep an eye on progress in the disease have not read further than the title. The title does not show that the breakthrough uses a combination of stem cell treatment and, as one article put it, ‘intense chemotherapy’.
I don’t know about you, but the idea of using chemotherapy treatment is frightening as hell! And what the fuck is the ‘intense’ part of ‘intense chemo’? From what I’ve heard and seen from friends who have fought cancer with it, chemo, in it’s most common form, is already intense enough. What can make it even more intense enough to have to put the word ‘intense’ in it’s description?!?!?! Chemo is so intense, many cancer sufferers decide not to go that route. That’s how brutal it is. These people are in much more dire straights facing cancer than I am facing MS, and they don’t feel the small possibility of it’s success is worth putting themselves through chemo. I’m not nearly desperate enough to go there, yet.
The process lined out in the article completely destroys the immune system before rebuilding it using the stem cell treatment. Let that sink in for a moment. It COMPLETELY DESTROYS the immune system. It doesn’t weaken it. It doesn’t bypass it. It completely destroys it. Eradicates it! Fuck a bunch of that shit! That sounds much more frightening to me than the disease itself. My immune system seems pretty damn strong. It’s sure beating the fuck out of my nervous system, so it’s definitely resilient and determined. I’m not surprised that it takes a super-chemo to fight it.
Plus, this treatment is still experimental. Yeah, sure. It’s seems to have initial success right now, but who’s to say that it’s not simply temporary? For all we know, whatever caused MS to show up in the first place is still lurking somewhere in the subject’s body. It’s completely conceivable that in a couple years, MS will be right back to it’s evil shenanigans again. (Yes! I’ve always wanted to use ‘shenanigans’ at some point. Farva* would be proud.) At this point, I don’t believe the possible benefits of this treatment outweigh the risk. Apparently, neither do the experts, since it’s still experimental.
Now, I’m not saying that I don’t appreciate the fact that friends are concerned enough to be keeping an eye out for breakthroughs. Keep it up. Just keep a couple things in mind when you see a headline on the subject of MS.
First, don’t judge a cure by it’s cover. Read the article fully. Don’t just send off the link without getting all the information it contains. Give yourself all of the knowledge you can about the subject. The title doesn’t give you the whole story.
Second, remember, the person you care about has the disease. It’s in their best interest to learn all they can about research into MS. Chances are, the article that popped up on your Facebook feed, or on your news wire, has most likely already been researched by someone actively searching for breakthroughs in the fight of the disease.
Once you have the full story, you can contact your loved one with more than passing interest. Instead of asking if they’ve heard about it, since they most likely already have, ask them how they feel about it. This way, if by some small chance they haven’t heard about it, you can tell them about it as well as send them a link for them to do their own research.
This tells them two things. It lets them know you are thinking of them and the struggle with which they are dealing. It also tells them that you are interested in more than just a cursory manner. In other words, you aren’t just saying, “Hey. This article has MS in the title. I’ll send it to so-and-so. He/She has MS!”
Now, you read my blog. So, if you don’t have MS yourself, this means you are taking an active step in trying to learn how to be a helpful force in your loved one’s life. Therefore, I think you will understand where I am coming from on this subject, and I think you are willing to go that extra step of expanding your understanding of the disease, not only for the benefit of your relationship with someone suffering directly, but for your own good as well. Most often, saying, or doing the wrong thing to someone suffering comes from a lack of knowledge. Therefore, the more knowledge you attain, the less chance you will have of making someone want to strangle a kitten. Kittens are cute. No one should be pushed to imagine strangling one. So, if you take anything from this post, take this. Take the time to expand your knowledge and save a kitten………because they are cute……….and furry……….and don’t enjoy being strangled.
Until next week, thanks for reading! Now go watch some cat videos!