Ive been crazy busy this spring. This week it has been installing a proper antenna on my roof, not to mention overcoming my acrophobia, which is IMHO not a phobia but a survival instinct. Anyway, here’s the antenna.
The other big thing that has happened thos week is my youngest daughter has officially killed my laptop by dumping a bowl of milk and cereal on it. FML^∞. It has made going on the internet a lot more difficult. Like posting this update via my phone. Seriously, F M L.
Is going to MS youth camp this summer. I’m not exactly sure she even understands what is MS, and I’m not going to force it on her until she asks for more information. But none-the-less, we had an orientation day at the Adler planetarium yesterday. It was fun, and I haven’t been out there in many many years. It is also making me nervous to send my firstborn away for an entire week. I’m sure I’ll persevere, as I always do.
I broke my site’s permalinks and have no time to troubleshoot. Please hold while the post links don’t work.
UPDATE: Wow, do NOT change permalinks without first planning. Bad things will happen otherwise.
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.