I've typed about this before, but I just can't help mentioning it again...I am always AMAZED anyone comes to this site to read my blathering c-r-a-p! But even more *interesting to me* is, where all y'all come from to GET here.By and large, the TRUE majority of *hits* here on CHEESE still come from the Jesus Campers...well over 1/4 of the daily drive by's here are STILL those curious folks looking for pictures from the movie, "Jesus Camp". Either that or, they are searching for a picture I posted over a year ago of a 7-week old fetus in connection with a RANT I wrote about the above movie.
There remain the handful of image-searchers looking for "MS brains" and "Spinal MRI" photos (of which, I seem to accumulate MANY of these such pictures via frequent rolls in the tube) and I'm happy to oblige these folks...I remember when I was also searching for ANY information about MS lesions. Of course, MY search was mainly to find an MRI that looked like mine that WASN'T diagnosed with Multiple Sclerosis just to prove my neurologist wrong!
There are the people who drive by with related hits for *Cymbalta*, *thyroid and MS*, *grinch wear*, *Trevis Gleason*, and the ever popular *what's my stage name*. I tend to worry about the people who keep frequenting THIS blog to figure out their "stage name"...I mean seriously. Are there REALLY that many confused exotic dancers out there lacking an identity?!?
People sometimes LINK to this blog and I have no idea who or what they are about...I also tend to back track on these *hits* just to make sure my upstanding CHEESE name is not being slandered (but then again, it would probably take a lot to qualify as *slander* for me to take offense...mostly because anything derogatory about me is PROBABLY true! LOL).
Tonight I was cruising my stats and sorting through the gazillion JESUS CAMP hits, when I came across several track backs to a website called, "Patients Like Me"...just because I have experienced some irritation with these folks, I'm deliberately NOT linking them here (you can find them yourself by typing the dubya dubya dubya dot PatientsLikeMe dot com...neener.). But, suffice it to say, there is a 19 page comment forum going on over there about Tysabri and CHEESE was linked within someones comments. "Why?" you ask. Well, there is talk going on about the high cost of Tysabri infusions (and if you are taking Tysabri and HAVEN'T shared your information with Lisa at THIS link, get on over there and do as you're told, dammit!).
Which causes me to segue into what may become my OWN drive by at Club Med regarding my Tysabri infusions (it's all connected here...seriously...LOL). I sent yet another email to Madam Administrator this past week, asking for an update on the unending saga and tale of woes. She DID reply in a timely manner and let me know the *heads of state* at Club Med would be meeting on September 19th to discuss the many questions/concerns I have posed to them. I worry what this REALLY means is "they" will be discussing how to use their giant health care fly swatter and slap me down...sigh. But, I will remain *hopeful* (which really means cautiously waiting for a shoe to fall) this is progress.
And, speaking of being "slapped down" (yet another loosely related topic), my sleepless/stressful adventures of this past week seem to have landed me in some new, unchartered MS waters. I awoke (after FINALLY sleeping...I had been awake for almost 36 hours due to working a night shift and an inability to sleep during the day) on Friday with a heavy and numb left leg (NOT unchartered MS symptom for me) and, when I tried to have a conversation with someone, my speech was suddenly halted. WTF??? I became overcome with an inability to *word-find*. And let me tell you, for someone who NEVER SHUTS UP, this was/is most distressing!!! My brain would think a word, but when I would try to speak it in sentence, something totally different would come out...often times, a word with a similar *sounds like* or beginning with the same letter of the word I wanted to say. I STILL am experiencing this, although to a somewhat lesser degree...but my halting stutter is quite noticeable to me. It was strange because, later in the early afternoon, I also developed a bad headache and diarrhea (but NOT of the mouth for once). Feeling quite alarmed by the entire ordeal (and secretly WISHING I might be developing PML from my Tysabri...because I am not one who is clinging desperately to life...hehe), I decided to do the only sensible thing and that was to just go back to bed and hope if I WAS having a stroke, Baby Jesus would take me in my sleep! Sure, some might argue the "sensible" thing would be to immediately call Dr. She Who Will Not Be Named...but why have TWO people worrying at once??
I proceeded to sleep most of the day Friday and when I finally awoke again, I felt much better. The headache had subsided and the lava flow from my hind end had receded. I still am having word finding difficulty and my left leg remains heavy, but my overall health seems stabilized again...oh, and I'm pretty sure I DIDN'T have a stroke nor have I developed PML...sigh. I imagine I have once again pushed myself over an edge of activity and now I must pay the price...or, an even better explanation is, I probably picked up a "bug" somewhere in my travels of licking emergency room floors in my job (and before you ask, "no", I DO NOT really lick the floors...I'm just IN ER's a heck of a lot).
So, in an attempt to pretend to take better care of myself (**bats eyelids with innocent look**), I need to close this post and go do a *drive by* on my bed. I can hardly WAIT for whatever exciting MS situations might confront me tomorrow (OUCH! I just bit my tongue while placing it in my cheek and typing THAT last line of ca-ca)...
6 comments:
I disabled my tracker, but sometimes think I should enable it again... not sure I want to know who reads me. I also have no problem with developing PML -- it being better than a progressive disease (to me at least). But I never get sick unless they give me meds that mess me up. For some reason I thought that was the "norm" for MSers. How did I ever make it this far being so uninformed?!
Yep, somebody referred to your blog. : )
Then somebody else came and checked it out and loved it. Then that somebody posted a reference to your blog on a different PLM thread. And, well, you're probably getting alot of visits from there.
As for myself, I decided not to discuss science or pharma companies with folks who are interested in listening. But I can't help myself and keep going back. I should stop.... I should stop....
But I'm impressed - a meeting to address your concerns. Wow. You need to bring someone who looks all official, a silent observer.
It sounds like we had similar Fridays. I also felt limited in the head. I got a terrible headache and dizziness which lasted all through yesterday. My legs got sore and heavy too. I also combatted it with sleep. Last night I slept 12 hours and now I feel ok again. I did not expereince a death-wish but I did cry and curse my MS several times.
As usual my brain is residing in the twilight zone, channeling thoughts for my fingers to write down.
Your graphic remindes me of the "Truck Hunters" that cruise back and forth in front of my house during deer hunting season (month of October) Wearing orange vets, most have a buddy in the truck with them, shotguns in hand. Should be illegal but it's not. the part that I'm sure is illegal is all the beer cans that get thrown from the truck window. And yes, In spite of posting No Tresspassing or hunting signs all over...since we often have deer in our pasture with the horses we've had some very close calls. I've grown to dread October
And BC... we ALL KNOW you are too much into self abuse to take good care of yourself!
The internet never ceases to amaze me. Hi Linda I am one of those folk that read ..but don't write too often. I think someone called me a Lurker? but.....I think I originally came upon Brain Cheese because I read something about you being from Seattle and I'm from Edmonds.
I keep reading becuz I like what you have to say and you make me think. I think the biggest problem with blogs is you start out reading one or two and they lead you to 3 or 4 which leads you too.......
As I described to some friends my newest obsession is reading all these blogs. I'm often in amazement at the writing, research and thought that goes into your blog ( & many others ) so THANKS so much
I will keep reading and try of at least occassionally write something in response to what you've written.
GG
love that graphic!
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