Let me talk about hope. A term that is tossed around a lot when MS is brought up.
It kind of feels like a distraction, to be completely honest. I understand the end result is the same. A world free of MS, or whatever is said about the hope to bring an end to MS.
This is where I begin my rant about capitalism and start sounding a little bit conspiracy theorist. So if you’re not inclined, move along please. This is my personal opinion, and if you don’t like it tough.
Last I checked (which was a while ago – it could have increased significantly), my Tysabri infusion bills my insurance company around $12,000 every time I get 300mils of natilizumab infused into my veins. Granted, due to the PML risk my infusions got moved to every two months, so it works out to ~$6,000 per month to treat my Multiple Sclerosis. That is more than I (or my family as a whole) make in a month.
Now I ask a question. With such a cash cow, do you really think these huge drug companies are looking for a one time cure (no recurring income for the drug companies) or are they just going to keep putting out more and more expensive treatments to keep you going so that they can keep draining you financially (guaranteed income for the drug companies)? You can guess what I think about a cure coming from a major drug maker.
Per usual it is up to the little guy, the mad scientists, to come up with a cure to MS. Too bad all that time and effort is being wasted on treatments. But I am happy to have them. Tysabri really seems to have worked well for me. As always, if you ignore the PML risk.
I am starting to feel so much better. I must’ve gotten a good dose of the Ty this time. Honestly, I was on the way up on the drive home after the infusion. Feeling good today. Not perfect. The muscles are still not yet fully relaxed in my neck and calf. My entire body too, but those spots especially. I also feel so full of life in my head, if that makes sense. I feel like I’ve been rejuvinated. Tysabri, you are a beautiful drug! Even if you do have a dark side.
I’ve been wondering a lot as of late if I’d even be aware of that muscle tightness were I not to relief via my infusions. Of if relief were not brought, would I be a miserable person at this point? I surely do hope that I never meet the dark side of Tysabri.
And i feel like i so needed it. Like I have mention I have been feeling really run down again. Not a fun feeling when you’ve got a family that needs constant attention. I’m not sure how long it’ll take to feel more energy in my life. Could be a day or a week. Only time will tell.
Until i receive my next dose of natilizumab. Again this last period of time before infusion leaves me jonesing for my next dose. I’ve been lethargic for the last week. No energy, hence missing last weeks post. The MS drain can be killer. Fortunately I don’t seem to need it as terribly bad as last time. Although I feel like I didn’t have my typical recovery from the last infusiom. Hopefully this next one will take care of the lethargy. I’m getting tired from fighting..this tired. I’ll let you know this weekend, should I remember.
Got the play set done yesterday. Put the last few touches on it.
Spent the last two days assembling a swing set for my children.
Wow – that was a lot of work. My upper body is soooore boy, let me tell you.
Two days into it and we’re almost done.
All I have to do is assemble the teeter tauter (sp?) and assemble the cafe awning. And drive the stakes into the ground so the kids can actually swing on the swings.
Unfortunately, today – the first day of spring break for my kids – it is supposed to snow and be generally crappy outside. So I suppose we won’t be able to use it today. That’s OK, they played on it yesterday while we were building it. Which wasn’t a frustration at all.
That server move went absolutely swimmingly. I didn’t even have to reinstall the associated accounts for sharing. I love it when tech turns out to be a lot less work than you expected. This is how tech should be people!
I’ve got the backed of the site up almost identical to the paid service I was using. Oh, on that note, you’ll notice no ADs on this site anymore. WOOHOO! I personally hate ads, but I had to try an equalize the hosting cost. Which I didn’t do. Which is why my site is back to local. If it’s slower loading, sorry, but the shared hosting just didn’t seem that much faster anyway.
I know, $12/month isn’t that much…except when you have kids. So forgive me.
If traffic increases I’ll likely go back to external hosting with ADs. Even if it makes me feel dirty.
Man, it’s been a rough week. I’m not sure if it’s the kids are amped up from being in the house all winter or all the stuff that has been going on, but I am so worn down this week. I am so low on energy at his point. Every day it seems.
Is it MS or is it the kids? The proverbial MS question that is always asked by me. It’s probably easier to blame MS, but I an’t be sure what is the true answer.- unless I were to have an attack. And I do not want that!
Good thing we’ve gotten a new bed. It is helping a little bit, but we’re in the period of adjustment with the new mattress soo that’s a bit of a kink in the equation. My back has been hurty, while it realigns to the new mattress #FIRSTWORLDPROBLEMS!
Most of all I need to sleep for like 48 hours so that I can recharge my batteries*. I cold also use to ditch my kids for that period of time as they are a majority of the reason I have lack of sleep.
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.
Is coming to TK. I’ve been busy with (local) server admin this winter. Also, it seems that I have put the cart before the horse on this site.
I followed the if you build it they will come mantra, which was wrong. I should have built it locally and let the traffic flow to this site. But none-the-less, this site isn’t covering hosting , which makes it infeasible – financially.
Hey it’s my fist non-personal website tat is neat for public consumption. Forgive me for my excitement. I should have left it on the local server and let the traffic hopefully build before I moved it offsite. Hence the cart-before-the-horse analogy.
Right so what I’m going to do is move it back to a local server. and let traffic hopefuly build If the traffic reaches the self-sustainability level, I’ll move it back offsite. At least on a local server, I won’t have to put ads on it.
Remember, TK is most definitely a work-in-progress. Updates may be a bit sporadic through the rest of this month, but after the move I plan on producing some better content for TK.