20170629

Dropped the ball

Oh boy, I messed up and overslept on infusion day. Thankfully, my awesome AIC nurse sue Ellen allowed me to come in late to get my infusion. It was much needed, I've been craving my Tysabri juice for a couple weeks now assad would be hard pressed to wait another day..

So a big thank you to sue Ellen and the rest of the AIC staff that made this possible!

20170513

Eight Years

It has been eight years since Shelby last had to stick a (IMO, giant)needle in my leg to administer avonex.

I do not miss that, I do not. The suck of the needle stick topped by two days of feeling 'fluish'. Not fun.

So that means I've been on Tysabri ~8 years.

20170321

March: A month and a statement

Its March, starting the busy spring. I don't think I've posted my infusion (or last few) infusions to this blog. The good ol russian roullette that is Tysabri is going, and going well. Nothing much really in the way of disease activity, or so say my HCPs. So I think that is good.

So I'll take that positive vibe and say, "Oh yeah, it is March, MS awareness month!"

So yeah, be aware of MS. It sucks, not much you can do if you have it, but luckily though chance, timing, and luck - in my case at least - I am able to keep my MS under control. I like it that way.

20170206

Damn

I was lucky when I got my MS diagnosis. After a brief stint with interferon I was placed on highly effective tysabri. I was offered the switch to gileniya due to my dangerous PML load (actually the presence of jc virus antibodies), but ultimately declined. Sure glad I did.

Tysabri is more effective than interferon and gileniya, and is on par with lemtrada. Plus I only need it administered

Fantastic

In about two years scientists will be able to tell if your MS means your partially doomed or completely doomed.

20160930

My leg is taking a turn for the worse

During one of my early MS attacks, I got a spastic muscle in my calf (is that right word? I'll call it that. A slight portion of my calf muscle is tight ALL the time). I've complained to my neurologist about it, and he didn't seem too concerned about it and chalked it up to arthritis. (F that, I know my bodyn) Well what started as a slightly annoying knee pain after my attack has escalated into a full blown leg/hip/back problem. I think the spastic calf has thrown off my body movements (gait). What started as a slightly annoying pain in my knee is becoming an aggravating, near debilitating problem with my leg, hip, and lower back. It is hurting all the time now. From the moment I wake up to the moment I go to bed it hurts. Sitting here in my computer chair really brings attention to the problem. It's become such an issue that I've been trying to avoid walking if it can be avoided. I bike everywhere. I got a trail-a-bike to take my daughter to school in the mornings. I've got a car - but I try to avoid using it. I shudder at the thought of a walking aid (e.g. cane, walker), but the pain is becoming unbearably worse. Which ultimately is BS because I'm doing pretty good otherwise. And I want to be clear about this, I do not think it's MS progression but a progression of a problem that occurred during one of my early episodes. I can still ride my bike without pain (which is a damn good thing as that's the only one of three ways I enjoy excising, and is the most utilized form of exercise). My neuro does not seem concerned about it, but his nurse practitioner, who I mostly see as of late, wanted to put me on backlafin for it, and I think I'll take her up on it next time I see her. It really seemed to become a problem yesterday, and it being around today is kind of scary.

And the worst part of MS? It's the degradation of my cognitive faculties (I hope that's the right term, again). Thinking has become more of a challenge. I wouldn't put it on anybody to notice it, but I sure do. Thinking in general has become more difficult. I find it hard to keep my thoughts coherent. And remembering stuff - well I'll just say if it weren't for technological assistance I'd be missing stuff left and right. But as always there could be another explanation: kids, three of them. Yup, I'm pretty much boned in this life for thr nexy eighteen yeaes as I'm the primary caregiver for them.
Well I can't continue this post as I've got a crying baby to attend.

20160802

Changing Mind

I've decided to do a 180°flip, I don't want to get rid of this domain.