I’ve missed a week worth of deadlines now. Busy. What can I say?
The MS has been unusually rough this go. Usually after my Tysabri, things come around. But not so this time. A lot of issues that go away after a Tysabri infusion just haven’t left this time.
The spastic calf is one of my biggest complaints. Other issues are popping up too. As always it goes down to is it MS or am I just getting older. I’ll give it the weekend and see what happens.
So yeah, a lot on my plate. I updated the framework of my personal blog, which required a different theme. Totally different look. Not sure if I’m happy with it. All in the back-end of things. I prefer to have the OS’s native flavor package installed anyway. Which actually puts me back a couple of versions of the framework. I am also trying to get that working on a beta server now. #DIGRESSING
On top of it all we’re moving into the home improvement part of the end-of-winter around here. Lots of preparation for a tremendous amount small jobs. That’s the thing. The only time I’ve let someone in my house to work on it was when we first had sewer problems. The guy who failed at fixing the sewer problem the time before. And the HVAC guy once right after we moved in. Wouldn’t you know it there was enough construction dust in this house to keep clogging up the furnace filter ever two weeks when we first moved in a few years back. Awesome dude put it under the warranty
And yes, I will attempt to resume an attempt at normal posting.
Yeah, talking about my calf again. No, I do not have a young cow, I have a spastic calf. It is agonizingly spastic. Not so much that I can’t do anything, it just really nags me most of the time. I’ve talked about it before, so I’ve conveyed how it is the most annoying part of my MS, no?
And therein lies the problem. It is MS, a neurological problem. A nerve problem. And the treatment options for nerve issues aern’t all that promising (ask my buddy with CRPS about that). My neurologist basically gave me three options:
1.) Muscle release. A surgeon cuts you open and manually releases your muscles. NO THANK YOU at this point at least!
2.) Get a baclofen pump installed. I ASSURE YOU I AM NOT A CYBORG* – so no, no thank you on this one.
3.) Take a baclofen orally. YES, yes, yes, omg yes! Given the options this was the only acceptable one to me as it is non-invasive.
Obviously if you’ve been even skimming my blog you know that I am using baclofen orally, and it is working pretty well. Taking it orally at this point is the better option, as when I receive my Tysabri infusion as I did last week or so, the calf spasticity usually goes away – in most cases. I can drop or at least decrease the baclofen until it’s needed again. Couldn’t do that with a pump.
After this treatment, though, the spasticity is still noticeable, however it has decreased out of the agonizing stage. Which is good. However, it is kind of scary that it is still around even if barely. Perhaps I am more in tune with it this time? Maybe the dose of Tysabri wasn’t as good this time? I’ve had pretty mild ride with Tysabri. The biggest side-effect I’ve experience – and this was early on in treatment – is the lethargy after getting dosed and sleeping away the rest of the day. Otherwise all the other effects, of which I know, are completely desired. Keep ’em coming! Especially since there doesn’t appear to be an exit strategy with Tysabri that doesn’t involve luck or a big relapse.
Here is a stretching program from youtube from Trevor Wicken, when he points to the spot on his calf, that is exactly where my calf feels tight.
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I’m not sure if he’s an MSer or not, but he obviously knows his stuff. I’m impressed. After I get my calf stretched out, I’m gonna try the whole body stretching if my kids allow it. So probably not.
*Nod to monsters versus aliens.
I received a piece of mail from Blue Cross Blue Shield of Illinois this week. And they’ve approved my Tysabri treatment as medically necessary.
WELL NO DUH!
I won’t be posting a version of this document to preserve my privacy, but I assure you, the bureaucrats sent it to me.
Was this supposed to make me feel better?
Holy Jeeze. The Bureaucracy of this country…perhaps world…is just too damned much at this point. The last thing I want to worry about is my insurance company denying my treatment because they deem it not medically necessary. What is to prevent them from taking such a stance? I’m costing them a bunch through no fault of my own. Isn’t that for what is health insurance?
Yes, I know they have to do it because of lawyer and whatnot. I don’t have to like it.
This may be the most obvious problem for me that arises from having MS. And it is almost always annoying. Sometimes are worse than others. At times, usually about a week after my Tysabri infusion, my calf spasticity will lessen greatly, almost to the point I forget about it. Then there are times, like the weeks before my last infusion, where it is down-right excruciating. I’ve found that stretching my calf by placing a roller or rolled up towel under my foot then leaning forward with the other foot helps…a lot. But the calf spasticity remains. Stretching does not completely relieve the agony. Having my wife massage the exact spot on my calf does bring great relief, but it is also short-lived. Then there is the medication, which seems to be specifically made for my spasticity since it helps so much. The drug is baclofen. Apparently abuse of baclofen is a problem in that Olympic cheating country (Think OAR), which makes me think those motherRussians have stomachs of iron. As I’ve never had to take food with medication to avoid an upset stomach, but with baclofen it is mandatory for me. That ‘forced’ eating along with the decrease in miles peddled have resulted in weight gain, which sucks, but as always I am digressing.
Have spasticity problems, here is where I got the roller idea. It also includes four other stretches for common spasticity problems. Stretch it out my fellow MSers!
*And have I mentioned how much I hate the word spasticity? I makes me think of spastic in terms of people who have very poor emotional control.
And try searching for spastic calf if you’d like an unrelated laugh.
I did the empower thing last night. I even had the lunacy to do the lancing and collecting on my own, while my wife was working. Which I believe was a mistake, as I don’t think I got enough blood into the container.
Plus I got light headed so I wasn’t thinking clearly when I was performing the collection. If I have to do it again, I’ll definitely allow my wife to do it.
The light headedness along with an out of control brood really made it tougher than it should have been. But at least I had the courage to do it myself…twice. I absolutely loathe needles of any sort.
Three needle sticks today. Shy of the record four sticks. Wasn’t terrible, even with the needlephobia.
That was fun. Veins in my left hand is the winners it seems.
As I mentioned before, my infusions happen every two months/sixty days. Most of the time I’ll get a bit worn down a couple of weeks before being infused with Tysabri, but this time the spasticity in my calf was intolerable for around the last few weeks prior to infusion. Deep thought was off the table for that period of time too.
Getting infused with that sweet Tysabri
Already my calf is getting less spastic. It isn’t better, but give it a few days and I’ll be off my baclofen and life will be way easier. I’ll be able to think too – hopefully – I’ve still got three kids in the house including a two-year-old gone wild.
The nicest part was my wife getting my appointment moved from 14:45 to 10:30. That means I get to have an awesome hospital lunch. Yeah, it may be hospital food, but at least it is food to have during my infusion. I was gonna stop and get a big old authentic steak burrito if my appointment had not changed. At least I didn’t have to stop to get food.
And for a bonus, my first public video on youtube: I apologize for the terrible audio. Go easy on me.
Yes, the second month of this blog’s second incarnation. Woot. Although I think that three posts per week has reduced the quality of the content on this site, IMO. It is OK, as the blog was new (again), and I needed to get it filled with content. And I touched on the basics of Multiple Sclerosis that most directly affect me. I hope it is coming across.
I’ll be posting a bit less at this point. Probably once a week and maybe once on the weekends. Still figuring it out. I’m trying to find a way to post in a meaningful way yet not let it consume all my free time. Three times during the week was consuming my week – not easy when you’re the primary caregiver to three children..and have MS. So we’ll see what a new schedule brings.
Attack, episode, exacerbation, relapse.
I do dislike the last term. Makes it seem like you’re dealing with illicit drug problem
All of these terms are used to describe an MS event. And I’ll lead off with uncertain to describe episodes. If you’re having an attack, your brain is most likely being damaged. Don’t worry, it is not as bad as it seems. You think brain damage and you think of someone who was in a seriously traumatic automobile accident or a major workplace mishap. No, it likely won’t be that. We with MS get our brain damage in much smaller doses. Micro doses if you will. and that is why medication to stop progression is so damned important in my less than humble opinion. But, as always, I digress.
Like I started, exacerbations are uncertain. Anything but. You could have an episode, like my first, where I thought I was having loss of equilibrium in my ears as my balance was slightly off. It was such a problem I even went to a doctor. I always think he knew but didn’t want to disclose MS as I didn’t have insurance at the time. I was starting a new job and insurance lapsed without the COBRA coverage. Young and dumb. It was nothing but time to allow that episode to heal away. And that it did – seemingly – resolve completely. I had no idea at the time of my Multiple Sclerosis. I thought it was a bad earache
My second attack was quite the eye opener. It was a fuzzy time, as my memory seems to have suffered a lot in that episode. I remember it mostly as being bedridden as I was so off with my balance. My vision doubled. Not in better eyesight, as in I was seeing double everything. Take my advice, don’t drive in that state.I knew at this time I had MS, yet had never knowingly experienced such a serious exacerbation. When it occurred – and it hit hard – I was more capable of dealing with what was happening to me. Good thing too, I was absolutely out-of-action for about a month. I ended up taking a three month sabbatical from my job because of that MSBS. Thank you FMLA.
As I mentioned I had already known I had MS and was receiving the care of a MS neurologist. He put me on a steroid, Solu-medrol. I’ve mentioned it before, so I won’t go into too much detail other than IT SUCKS. Especially when you have to drink it. DO NOT TAKE THAT OPTION. And expect to put on some weight. Perhaps a lot. I’ve never experienced a hunger like that,.
So hopefully I’ve explained what an MS attack can be like. There are extremes. From barely noticeable attacks that you mistake for something else to jaw-dropping, life stopping, making your body unusable for anything but life-support exacerbations that are breathtakingly momentous. (that last sentence kind of reads poorly, sorry)
If you know me, and I assume most of the people reading this blog know me at this point, you know of my serious aversion to the friendship and society destroying bookface. I canceled my personal account years ago, mainly because of my stupidity, but also due to my introversion. Ultimately I decided to sign up for a bookface account to have another outlet and hopefully grow my viewership for this site.
Then it seems every time I tried to post to my blog I’d get a message about Facebook being disconnected. I’d then log into BF and would be locked out for security reasons. WTF? It’d then ask me to post a selfie of myself, which I would do. Jumping through hoops…for what? I still stand that they did not have a picture of me to compare it against, so what is the useless point of that exercise? I will never know. But ultimately that method would get me back in for a short period. And all would be well, until this week.
frustrating, yes. Recoverable, yes…until now : (
I tried making my Monday post via my blog, and again got the message that BF was disconnected. Fart poop doody*, OK, I’ll go and post a picture of myself again, for whatever reason. Nope, not this time. My account was straight up deactivated.
Holy WTF? Why?
I have no idea why I was kicked out of the walled garden that is BF. I tried appealing the deactivation, but have yet to receive a response from BF.
But the least they could have done for me is tell me why they disabled my account. Frustrating is the feeling I got most often when I used BF. No rational behind their walled garden turns frustration into further loathing.
I suppose I’ll have to have my blog without Facebook integration. I lose. Nothing to see here. Move along.
And this concludes my first month of this new blog!
*Thanks Boss Baby for that statement.
Before I even published the post complaining of my FB deactivation, I’m back in, apparently. How this craziness works, I’ll never be sure. They never notified me except the banner when I tried to log in, and never notified me about the reactivation. Again, walled garden if you get the reference. But for now, I’ll celebrate my blog almost fully working as long as this post makes it to BF. Time to think about design changes for this site.
I am nearing the end of the first month of the new TK. Its going OK, I’ve been mostly concerned with the back-end stuff on this site so far. I’m not totally thrilled with the default site design, but with three kids I just don’t have time for a site redesign. Maybe the future will bring a redesign to my site?
The worst part of this site so far is the facebook integration, or lack there of. Every two days or so facebook wants me to upload a picture of myself to prove it is me. If they don’t have an original photo of me to compare against, what is the point? Causing me endless frustration? Aren’t most of the accounts on there fake anyway? If this post is late, it’s the fault of facebook.
It’s every couple of days I get locked out, and it’s really frustrating.
The best part – aside from the general sharing of my life and MS – is spreading the news that in 2018 there are treatments to slow down progression of MS and therefore hope. I’m not sure if it’s me, or the reaction of doom when I mention I suffer from MS, but it really seems to be that when you tell people you have MS there is a certain pity that takes over the conversation. People see you as doomed. And that is exactly what I’m trying to tell people. It isn’t like that anymore. Or at least I hope to expel that myth. People certainly are free to take the slowly withering away course if they choose, but not me. I am going to fight it with every last bit of strength I have in my body. I will go down swinging. My skull is thick like that .