Rant

I don't think I've had an all-out rant in awhile (atleast not that I recall) so I think I'm due one..regardless recent events have earned one

In the first place..I kinda wracked up a crap ton of student loans--yes my fault cuz I switched majors most of the way thru the first one when the MS *really* first manifested itself and actually before I was Dx'd and I began flunking, unable to walk to and from classes or follow what was going on & fell into a deep depression. Of course, I was going to an incredibly expensive state school =(

Once I got the MS kinda straightened out and was feeling a lot better, I decided to continue in a different, but kinda related field (all sorta health/science related). I managed to complete my AAS and BS thru an online fully accredited, but still not cheap school. And I started looking for jobs.

Then we moved and I had a bit of a relapse (tho we think I was starting towards it before the move). Now I'm on total & permanent disability and with that, I was able to get the education school loans discharged..but obvi not the private loans.

Now, tho, the IRS is saying that the school loans they forgave are to be considered earned income on my taxes this year!!! WTF!! That means I'm gonna owe the government several K$$ even tho I DON'T WORK. and if I try to work, I lose the disability benefits and they slam me with the education loans PLUS whatever interest may have incurred in the past several months. The effing government gets you coming and going and I know they say "well its different departments" I don't effing care if its different departments!!! its the same d@mn entity and its give w/ one hand while taking w/ the other and kicking w/ the effing feet just for the hell of it.

Next, and more recent, I can not abide people/companies who are just too lazy(or stupid) to do their effing jobs competently! Hubby's company switched insurances recently, which means my specialty pharm for Tysabri and Ampyra changed. When I tried to call them to get everything straight and get my order in, I found that I had a several K bill with them from yrs ago. Turns out, when I last had to use them and they billed the wrong insurance, they neglected to bill the correct insurance when we gave them the correct information. Since we never heard back after submitting the corrected information, we had assumed they had submitted payment request to the correct insurance and everything was squared up...obvi not, someone just sat on the info for about 3 yrs..

Now, they are refusing to ship meds until I pay the several K on the bill...I feel a lawyer (or the threat of one) for their eff-up may be in order =(

<this is why hubby usually deals w/ the person to person stuff...I get flustered, then I get REALLY REALLY P/O'd & people tend to hang up on me...>

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.