how about some cheese to go w/ this whine

Everyday I sit staring at the keyboard I have set in the living room. Everyday my fingers itch and twitch to run over the keys again and make smooth, beautiful, clear music come pouring out of it like I use to so long ago. Everyday I turn away again in shame...I know its petty and stupid but I'm ashamed for myself.. I know what I used to sound like and the mess I am now is painful. I know everyone starts out from square one, but I guess I'm too proud and so far past square one in my mind that I have trouble making myself take those babysteps again with everything in my life..especially something that brought me such joy, relaxation, release..I would get so lost in the music that I would be almost blind to everything else around me.

Hubby has asked if I want him to take it away. I refused cuz I honestly really do want desperately to play again...but I guess my want has to get up past the amount of shame I feel in how terrible I sound to myself and the embarrassment I feel stumbling along like the kid at her first lessons again...and I remember those days; Mrs Climber who only let me play Edna Mae Barnum books (no idea if the spellings are right) and refused to let me try more advanced like my cousin Katie cuz I was too young. Then Mrs Baker who only let me play religious things. Then on to Jill who had gads of music at hand and was willing to share it all with me regardless the difficulty or type

Someday I'll get over myself. I'll stop remember what I had and comparing it what I don't have and instead start working on getting atleast some of it back without whining about it all  =/

A subjective truth

Read an article a short time ago and it got me thinking that some 'truths' aren't as evident as and clear as others...The article was about the truths of MS and how the US celebrities afflicted w/ this terrible disease have managed to put a gentle and less horrific face upon it. Its true that Romney may calm her fears about wheelchairs by spending time w/ horses, but that won't stop the fact if it comes to be--this is merely a coping mechanism so she doesn't have to think about where this disease may lead in the future. Same w/ Osborne or Montel, regardless how desperately they campaign for MS fundraising and research. These are all mental coping mechanisms..In a way, I almost feel sorry for people like this. Yes, they have access to all sorts of state of the art med facilities and such, but I don't believe they've accepted the diagnosis and what it may mean for their futures..I don't wish them ill, I just hope when and if the time come that their MS progresses further, they're able to deal with it (mentally)

The article states that people need to understand just how much MS can and will destroy the body...he references a lady who is essentially fully paralyzed, but probably has a perfectly working mind... and that's worst MS can do.

I'd have to claim falsehood--that's not the worst MS can do. Science has so many new advances for motion-assistance, but nothing helps a broken brain. Once the cognition begins to seep out, there's no mechanical device to rebuild the thoughts, words, memories that are briefly glimpsed but sit just out of grasp. out of recall..until days later...and even then it may only be half the thought or even half the word.

I may not have perfect control over my body..MS has definitely messed w/ my balance and gait, but I'd give almost anything to have my mental cognition facilities back. Two worthless degrees, years of schooling I'm still trying to pay back and knowing now I have trouble w/ basic math but then I aced advanced Calc with only setting foot inside the classroom to take the midterm and final... Matt keeps reminding me a lot has changed in my brain since those classes...a lot of damage, scarring, but I still get so p&$$ed cuz the info was/is there so I should be able to see it.

I know everyone's MS is different..some are affected more physically and some more mentally. The one time I spoke w/ a nurse in the ER about it and mentioned the cognitive issues, he was baffled. His mental image of MS was canes and/or wheelchairs. The worst MS can do to someone is not always to rob them of movement. For an athlete - yeah, that might be their worst hell. But I'd personally rather have a set-up like Hawking  (tho I'm obvi no genius) then to go out like most people with Alzheimer's do - forgetting everything and everyone.

midnight ramblings

The mildly sleep deprived brain..not entirely, cuz I'm getting sleep--its just all been shitty cuz I've been in pain from one ailment or another (besides the pt)..comes up with some of the weirdest connections and thoughts..

I was sitting here thinking about some of the ways the MS has hit me the hardest..& its definitely been with this cognition and memory crap. Now.. I didn't have perfect recall or anything like that, but I never really had to struggle to see connections..for the most part (there were a few things I still struggled w/, but not many) my brain was just geared to seeing and getting the whole picture.

I honestly think that actually was conditioned into me by the way I learned to read..I made Mother read the same book so many times I memorized it by page and since she would point to each word as we went along, I recognized the whole words...teachers weren't successful teaching me individual phonetics until much later cuz I figured I knew more than the other kids, so I'd stop listening =/. I never learned that simple skill of piecing an unknown together until much past the 'formative' yrs. (yes, I was the know-it-all bratty kid that parents loved and most kids hated)

Now, tho, I have such a hard time not looking at everything as a whole and getting SO frustrated when things don't come into focus like they used to. I always feel like I'm missing some important clue that would just help everything I see around me snap into place again to form a nice, understandable, environment where I feel like I'm back in control again.


This probably all made no sense..but I'm done w/ my sleepy time tea stuff..so I'm gonna try to find a comfy position to sleep

My new "blog" thing...sorta..

So I've started my cognitive rehab. She has me showing up twice a week right now and giving me "homework" to keep my mind active at other times...things like thinking of items in a group. Hubby is helping tons by tossing out questions the therapist asked the session at different times during the day, especially ones I had problems with, so I'd have to suddenly activate my mind at random times..eventually I'm hoping it won't take an effort for my neurons to activate.

One of the suggestions the dr had was to keep a journal/calendar..something to refer back to about how my day, week, or however I want to track has gone, I'm not the best blogger/correspondent, but I figure jotting down pertinent things as they come...whether its the end of the night, week, etc...On to the real post for the night:

I've posted before about dreams...most of mine utterly suck, recently haven't been any exception. Last night, my dreams were filled with spiders of all sorts and sizes and mixed with agreeing to go back to my old hotel job--including the worst uniform ever imagined. All of it was covered with webs, spider ick, living spiders (some as big as my foot) and I needed to wade around piles of spider gunk that toward over my head just to find where my old uniform was stored...Disturbing, all of it

In other news, Xan seems to be getting better on the steroids..I'm not seeing as many clumps of fur laying around so I don't think she's pulling it out anymore. I also haven't been seeing her rub up against as many corners to itch her cheeks and ears. Giving her the pills have been..."interesting". Supposedly, they're flavored, but she still doesn't like the dispenser. Thankfully, only a few more day.

My Stupid Smart Dog

I feel terrible for my dog sometimes. She’s smart. She comes from a smart breed..but also an exceedingly stubborn breed. I’m not a trainer, by any means, but I’ve even been told by others who ARE, that her breed is difficult because they are smart & stubborn, so I’m not imagining or exaggerating it.  However, even tho she’s smart, she’s not smart enough to understand when her routine changes…she just knows something is wrong and usually its that I have shoes on or ‘Dad’ put down her food instead of me, or even any other little thing missing from the house. She’ll panic: pace the living rm, won’t eat, and visibly trembles.

When we leave the house, we make sure to give Ebbs a special treat—one she doesn’t get at normal times like bed time or treat time, etc..in hopes to make her more focused on getting the treat instead of the fact we’re leaving. A few times, she’s only eaten half the treat until we’ve returned =/ and she’ll be sitting in the almost the same spot in the living rm when we walk thru the door as when we left. She’d grab it and run it over to me before laying down to eat the rest of the treat. When she gets really upset w/ us, tho, she’ll find a tissue and shred it in a neat little pile. She gets in trouble, of course, but to her..it was justified. The last time she _expressed_ her frustration..she actually was smart enough to tear up the plastic around the tissues in a pocket pack of Kleenex. We found the tissues still folded beside the torn up plastic (no joke..it was a mostly unused packet)

Ebbs will also frequently sit and ‘people watch’…its almost painful to watch the questioning confusion as she sees some of the things people do, then turn to me as if asking explanation. Matt thinks I imagine it all and attribute emotions to Ebbs that she doesn’t feel..Maybe I do, but I’ve spent all my life w/ animal companions being some of my closest friends (as sad as that is to say….) I’d like to think I’ve learned to read at least some of their body language…

Inception

  I loved the movie and the entire idea...but I didn't realize it must be my life on which the idea was loosely based..
dreams within dreams and somewhere finding the level of reality...is actually more confusing than the movie portray..its quite exhausting and frustrating as well. I start questioning what I've actually done, what was done in a dream, and what I was *really* intending to do (on my mind a lot). Its disturbing when I dream arguments that never really happened, but because I dream that I've 'woken up' my mind is unsettled and my sleep gets ruined.

It really sucks cuz the deep dreams are always graphic, weird..and just wrong. The next lvl up dreams..when I 'think' I'm awake.. aren't much better..but usually involves more arguments, bugs, laundry (piles), dishes (sink loads)..all real life crap..essentially stuff that wouldn't say "dream"..sure there is always something "off" about it, like the shape of the house, the the fact that I have multiple sinks full of dishes to clean, a terrible wardrobe, or something just as weird. Unfortunately, when I wake up in reality from a dream with a dream ...regardless that my "alarm" is a gentle song and the call of birds, it is still jarring - almost painful.

Looking in a mirror..its no wonder Matt looks at me frequently and says I look tired...why not? I might as well 'look' how I feel.. 'sides I spend days after days in each layer of my dream in addition to the hrs in real life. Too many times, I'm ready to go to bed shortly after I've left it =(

leave my head alone

The past few weeks have been... interesting... headaches will not stop plaguing me. but they aren't always the same type or intensity of headaches. Sometimes they are the ones I've so, lovingly called "ice cream" headaches. They feel like I just ate a ton of ice cream really fast (as the name suggests). Unfortunately, they aren't affected by any of the normal 'tricks' that usually help when cold items are eaten too quickly..e.g warming the roof of the mouth w/ tongue or drinking warm beverages. Then I have the ones that try to crunch my entire head inwards...like its trapped in a vice. A newer headache-ie "joy" is the feeling that something is searing the tissues of various areas of my sinus cavities...usually it will burn terribly for several minutes, then end with an overall headache that just is pressure forcing outward from everywhere...the area that burned will ache for quite awhile.

The latest, and maybe most worrisome..depending on what's causing it...is that I've been feeling the weirdness that was normally caused by a lack of meds. There have been a few times when things when completely FUBAR with one of my pharmacies or I miscalculated and ran out before a refill or new script was written. The only way I can think to describe it is sorta like the feeling one gets when going over a bump too fast..that belly flip..the stomach dropping out when going down a roller coaster..Only, I feel that in my head. When I was off the the meds, the flip flop feeling in my mind was constant. Right now...it comes and goes. I've checked my pill containers to make sure they have all the right meds. Matt has double checked them. I'm at a loss as to why I'm feeling things I'm not supposed to feel unless my meds are out.

I have an appointment tomorrow. Maybe my neuro will have some ideas..