Yeah the fun of autoimmune problems. I’ve got a bright red patchy spot on my skin that itches like…well, I have no good analogy, but it is really, really itchy. I scratch, which feels better temporarily, but it only inures the area I am scratching and it’ll be itchy again as soon as I stop. I have been putting moisturizing lotion on it, which isn’t really helping. I ran f of the hydro-cortisone valerate (HV). That stuff really helps, takes away the itchy and burning feeling, but it requires a doctors authorization get refilled, and I don’t want to have a dermatologist visit to get some HV. It drives me insane.
Aren’t we at the point where medications applied to your skin should be available OTC? Why does society deem that I need to visit a doctor to obtain a prescription for my skin? I know what I need. I know what is the cure to this problem. Just let me have it without any further hoops through which to jump. I don’t want the indignity of having someone probe my skin, but I want the relief from my immune system. This happens every year around this time too.
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.
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.
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.
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 .
No, I’m not talking about that realization that what is important to you is what really matters. So what is one positive thing about having MS? You can make $50 (US$, I assume) if you submit some of your blood to the DxTerity study and answer some questions. It is just a finger prick, not drawing blood from a vein with a needle. You do the small blood draw at home and return it to the study in a prepaid mailer. And the blood sample goes to a study that looks at your genomics. Other than that you’ll have to read the story.
Go here to enroll: https://www.empowerstudyms.com
What is the empower study?
Evaluating Multiple Sclerosis Patients ShOWing A GEnomic Signature of Therapy Response
Now why am I sharing this with my fellow MSers? I do not receive any compensation from posting this information. Yes, there is financial benefit to you from participating in the study, but I do get anything for referring you there, excepting any research findings that benefit MSers. The links above are clean. They do not have referrer information. Go for it, get a little extra cash for yourself, and – what I believe to be the most important part – further research into MS. For more information visit the study’s FAQ page.
And now I get to give credit to where I found this study. I was checking out other MS bloggers and when I visited Cathy Chester’s An Empowered Spirt and found this information. A big thanks to Cathy. I actually found it on many MS blogs after visiting her site, but Cathy’s was the first blog on which I found the study information. Now on to lurking other MS bloggers. People with MS like to blog, apparently?
It’s been around for a while, just moved it to WordPress. Sorry Blogger, but you didn’t offer enough customization, nor did you make me want to keep my site updated.
And welcome to the new beginning for taintedkernel.com