News in Friends With the Benedicts

Good stuff first: I always knew that the MS Society awesomely gave free cooling vests, etc. to people with the disease. But until last nite, I thought that you had to print a paper app and send it in with proof of disease, etc. Not anymore. I was able to upload a picture of a recent MRI report that has all my info on it, including my diagnosis, and my new cooling vest and all the stuff that comes with it!! I looked them up on Amazon just because there were two diff brands and wanted to know which one was better, and boy was I surprised to see the retail price of $200!!!! I feel so lucky to have stumbled upon that when I did. The heat is killing me lately. And winter is really no better… just for everyone else lol.
Now the bad: The reason I was there and happened to see that is because I was doing research (finally lol) on my new diagnosis as Secondary progressive MS. Turns out that the only difference between that and Primary Progressive (a real bad diagnosis) is that those people never had the relapsing kind to begin with. So basically I am pretty much (although admittedly not as severe yet) equal to someone with Primary Progressive MS. This means, well it means it sucks. My walking has gone downhill, I have developed a jerking similar to Parkinson’s, and several other fun symptoms have come back, all without me having a relapse. Apparently that is how they know. There is no change in my MRI. Also, white matter is all over my brain. I looked up the big ass words from my report and found out that I have a lesion right on the area where my left side brain connects to the right. Ha things make much more sense now right?! lol. I really do have half a brain. I also have white matter “disease” in my frontal lobes, which is not good. My head hurt, I think from the thought of all that stuff in there after I was done learning. But I understand a lot better now. Also, it is no coincidence that I have high blood pressure as well as diabetes. They go hand in hand because they are vascular diseases. Called “co-morbidity”, MS causes a lot of other problems, and while it cannot kill you by itself, it can cause diseases that DO. One is lung infection from aspirating stuff when you choke on everything. I have this symptom. It’s funny, a lot of the symptoms I have are considered rare. Including headache! Also, I learned that people who present with the first symptoms of cognitive problems as well as vision loss are more prone to faster disease progression. Comparitively, those who have motor issues, like walking problems, etc. physical disabilities more than anything progress slower. I am right on track. To put it into perspective, they say most people will progress from RRMS like I used to be, to SPMS within 10-15 years. I was diagnosed 4 years ago this Feb. It’s no wonder I have been depressed today. In a way it is validating. But yea, sucks.

On another note… I finally got to hear, for the first time ever, my Goddess Amy say FUCK on their new unrealeased album!!! Here are the lyrics that apply:

“The more you try to fight it
The more you try to hide it
The more infected, rejected, you feel alone inside it
You know you can’t deny it
The world’s a little more fucked up everyday”

Hearing that, oddly, was the first time I ever felt attracted to her in that “special” way. Before I have revered her, put her on a pedestal, and seen her as too innocent. But umm.. Amy been a bad, bad girl...... lmao. I like it. Oh, and it is an awesome song too. I would share, but I had to purchase it on Amazon and there is only two tracks available until album release Nov. 10th!!!! OMG THEY ARE BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! sigh All is right, kinds, with the world. <3