Tired..so worn out

Its amazing to realize how exhausting constant pain can be. Haven't been sleeping well to begin with anyway. My body has decided I've been on my "relaxation to help me sleep" med for too long and it stopped working. Now I haven't really slept easily for well over 3 - 4 weeks. My GP has tried to get me on a new med, but they either don't work at all or I'm having nasty side effects--and they don't really work entirely all THAT well.

Now with this new med and dosage, I get maybe a few minutes or hrs of sleep at a time. But its restless sleep, not a deep sleep where my mind calms and stops running in circles. Along with that, I've had an almost constant headache. Mostly it stays as a low, constant, background hum of pressure/pain going all across the entire front and top of my head. But it's also been spiking into agonizing migraines..

I've called the sleep dr who diagnosed, or rather pronounced, that I don't have sleep apnea. but the soonest he could see me is middle of next month. I could go to another sleep dr in the meantime, but I'd prefer to go with the one I'e already visited and is actually part of the same medical group as my neurologist, physical therapist,  yoga instructor...so info passes quickly between them all, especially since they are also in the same one flr building  and using the same computer system.

I think the med is also screwing w/ what little ability I have to regulate body temp (which isn't much). I get cold flashes that are so bad they are painful, esp in my extremities... I can't even hold my fingers close cuz they are so chilled they quickly freeze whatever body part I hold them against instead of being warmed by the 'body heat' I supposedly give off. And the cold spells have been worse and more frequent since beginning the new med.

My fatigue or the restless sleep or something is causing bruising...either I'm walking into more things & not remembering/feeling it or its being caused directly by the med..IDK, but some of them really hurt =/ Actually, pride aside, they mostly all hurt, just some a hell of a lot more than others and some of those aren't even really visible.

It's so damnably tiring to be dealing with the  headache pain that the OTC's I've tried won't touch and my migraine Rx barely deals w/ (and not for long). And trying to keep my fingers/nose/lips warm (and not blue) is another drain. Blankets, gloves, socks, etc don't help..even heated ones or heating pads..they just kinda trap in the cold air surrounding my limbs. The unexplained bruising that makes things rather...unpleasant...is getting worse almost daily

the runaround continues

Agreed w/ hubby that this whole SSA mess needed another call to see what was going on..tried to get a supervisor, but got stuck with a damn desk monkey again who did the whole 'gotta verify who you are and why you are calling..' bs. She again told me everything was in place for my Medicare to be withdrawn, but that the payment center had until the beginning of October to do so...this was just another chat so it won't be recorded in my file...again

So now... I REALLY don't know what the F** is going on!! no one can agree with anything any one else is telling me over at that department. Now I wonder if they're all sitting around with their thumbs up their asses. They don't note most of their calls cuz then the clients charts would be too "cluttered" and it would make too much work for the desk monkeys so there's no case #,  reference #,  or record of most calls into SSA. I know I'm a cynic...but since this is a government agency and bureaucracy tends to thrive on redundancy...I wonder if they don't want everything recorded to save their own asses on things said by ill informed idiots and people just placating callers by promising whatever they want to hear in these little 'chats' that don't actually result in changes to the charts. Like I said...cynic. Xb

SSA runaround

I am so far beyond irate! And I know posting this on a semi public forum is probably the dumbest thing ever since its bitching about my own government, but..oh-well… I’m not saying anything false, regardless what they say

I’ve been given the run-around by the *** SSA for the past *several* months. When I became eligible for Medicare, I promptly declined and mailed it back. I guess it never arrived. Or atleast, it never got entered correctly. So I’ve been trying to  correct this ***ing mistake since a month after enrollment. First, they say they FOUND the letter I had mailed back to decline Mecare. But (and I didn’t find this out until _much later_) since it was just a “chat” the SSA lady & I had it wasn’t rnoted in my records because conversations that don’t cause an actual change to a record does not get noted.

When my enrollment status didn’t change, I called again. They had to search again for the letter..they finally found it..but was told to call back in a few days to double check on the status of my enrollment.

When I called back..the person atleast saw that I had called the last time and I was told that they had the note and everything would go into effect at the beginning of the month and I should be reimbursed for the charges of the past months. Beginning of the month rolls around…no status change.  Just in case I give it ‘til Monday since the 1^st was a Saturday (tho that shouldn’t matter since it ‘should’ be an electronic change).

So I call _again_ Now, they CAN’T find the letter. Instead, I have to re-submit a request to withdraw from Medicare which will to effect this month (if I’m lucky) and I WON’T be reimbursed for their *****-up..I was told by three different agents the letter was there and I don’t know why it was never actually changed, noted or marked in the file. I understand they deal w/ millions of people a day or whatever the statistic they blurt out on the hold loop, but a simple check mark to change enrolled to un-enrolled while holding the letter or a few key strokes to type Medicare denial letter found or something like that would have been nice.

This whole thing is one big bundle of stress and a mess and its so ***’ed-up. I feel like someone at the SSA has been playing me for a fool and I’d love to go and smack some heads until I got some straight answers.

Stupid Realizations...

I realized something this weekend...I'm not happy. I'm not sad either, but I'm not exactly happy tho. I mean, my life isn't terrible. I have a fabulous husband who I'm in love with and loves me and supports me in everything. We have a great house, plenty of food, money, and even a little extra to do the occasional night out...so its not as if I have a bad life. But I'm just not "happy"

By the same token, I'm not exactly depressed. I don't spend all day moping about moaning about how horrific my life is. Honestly, I don't really think about it most of the time. I'm usually not in pain, I've recently been feeling more energy (comparatively). I just don't have the focus to stay on task for so many of the things that need to be done around the house...believe me, the half done things around here can contest to that.

Talking to Matt this week, however, I think I kinda nailed down (atleast somewhat) where some of the unhappiness is coming from. Right now, I feel like I am just taking up space in the universe...It wasn't so bad when I still felt sick, i.e. fatigued, numb, etc But with me having more energy and (to me) seeming more coherent and 'with-it' (even tho I know I still have probs) its hard to accept the 'bump-on-a-log' status that I feel I am. Essentially, in my mind, I'm at the point where I should be capable of giving to society in some way.

Maybe its the way I was raised... IDK..I just know domestic stuff is difficult for me. I never was Ms Suzy Homemaker. I was always out in the barn or in the shop working on big equipment w/ Dad so Mom never imparted her few domestic skills to me and I was abysmal in Home-Ec class. Unfortunately learning those skills with a damaged brain is a bit more challenging so I'm not finding much happiness with those few (far between & meager) sorta successes.

It was always stressed to me as a kid that productivity (work) = success = happiness. So being on disability has  kinda messed w/ my mentality. I know a job would be too stressful and would start the original problems that I've just started to get under control after over a yr off. But as I said, I'm needing to feel productive somehow...feel like I contribute to society instead of just breathing oxygen and eating food. That way I can feel happy and useful again because I'm doing something needed.

The idea Matt and I came up with (technically Matt suggested) was to volunteer a few hrs a wk at the local animal shelter. This way there isn't the stress of pleasing a boss to keep a job. I kinda pick the hrs...I just have to make sure I show up at the hrs I promised. And it puts me back amidst animal care, which was what I always wanted to do (original degree was gonna be vet until brain died on me and hands followed)

Its almost embarrassing to realize how such a small thing can be the difference of a happy existence or one that just IS. I look at my friends...one is an awesome baker. She brings great tasting desserts into people's lives. & she a missionary so she spreads the Word about. Another friend is in photography. She memorializes events with her beautiful photos. They all add something to the lives and happiness of others, which in turn brings them fulfillment. And I guess that's just what I'm missing...

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.