Its the little things

Tonight, hubby & I went out to the movies (Capt. Am., Civil War..very good!) since socks/tennis shoes don't really go w/ skirts & 90+ temps,it was too hot for jeans (I'm lacking shorts at the moment..shopping trip =D ) I had to reach for some old sandals. This was a spur of the moment idea..usually I just suck it up and go w/ the jeans. Don't get me wrong..I loved these sandals..I wore them everywhere. That's why I kept them after I started having balance issues and had to drop to strict flats. They have about an inch rise..not quite a heel, more like a wedge. I was never good at wearing actual heels or flip-flops and this strappy sandal was enough of a dress casual that I could wear them w/ anything. Maybe 5 yrs ago my balance became so bad that even standing up in the sandals became almost impossible, and trying to take a step would turn an ankle. Tennis shoes were a little better..barefoot was the best. but of course, I can't go everywhere barefoot so barefoot shoes really helped. Yoga classes. & the sight of the sandals sitting in my closet. Tonight, when I tried on the sandals..I knew it might not work, I was risking injury (I had my hand right above something to grip..not totally stupid) and I might be disappointed. I also tried them on well before we had to leave. That way any problems would happen at home. Needless to say..the night went off w/out a hitch and I felt as good in the sandals as I ever did.

I want to believe ^__^

so, re-watching the X-files the other day--yes, I admit it, but my fav character was not actually any of the top main good guys..I liked the Smoking Man. Mostly cuz of the ever-present smirk that said, 'I'm smarter & better than everyone around me. Since I know what's gonna happen next, I can get rid of you all whenever I want,'

Anyway, there's a scene where something is interfering w/ Mulder's hearing, like static, muffling, a high-pitch almost unheard whistle..and from his acting (description) pressure. Then it fades away and he can catch the end of Scully's rant to him. All I could think when I saw it was "that's what goes on in my head/ears!! Except it doesn't fade away, I just have to turn up the volume or have people speak louder..  =/  At least the static, etc doesn't increase to the new lvl to compete.

I suppose the positive side to it not being what that character was going thru is that while it didn't fade after the alien item what taken away..it also (hopefully) won't turn into a bunch of voices mumbling incessantly in my mind ;)

When did the insurance companies become drs??

I've been denied the remotest chance of access to strong sleeping aides...not emphasizing costly--tho out of pocket..yeah kinda cuz the generic and regular are exactly the same cost...WTF. Insurance co basically has told me that regardless what happens, there is no way in hell they will ever consider this med the dr want me on..even if I go thru all the other ones like insurances often require as the proof that a dr actually knows better than a damn group of stingy fat cat CEOs that just love to make like miserable for us peons will no say in the system...

yes..I know..I'm ranting the say crap over and over.. I apologize. Technically I 'slept' the last few days..the night before I used some OTC thing...its a generic of one of them and since they really all only contain the one ingredient I don't think it really mattered what it was. It mostly worked, just took a while to put me to sleep and while it didn't leave me as muffled and muddled as the amount of benedryl my system currently need to put & keep me asleep all night--I was worthless yesterday. Although, yesterday was also the day after my infusion..so that day is usually rough for me..so I don't think those two things combined very well for me =(

Last night, I had what my insurance felt should be the Holy Grail of sleep: ambien. I woke up every time muscle twitched, blanked shifted, a car passed outside (which I shouldnt have really been able to hear w/ all m hearing probs) then the people's dog somewhere behind us started howling, yipping, screeching somewhere about 6 am.

I don't know which house but I've called animal contrl 3 times cus this dog is left alone outside for many hrs at a time. we have triple digit weather frequently...I consider that a bit cruel..even if the dog has shelter cuz even a small enclosed wood or plastic pet hut is not gonna cut the heat for hrs at a time. Unfortunately, that hasn't done a bit of good and every day I'm sitting here listen to the dog howl and whine...

I had the hope of some of my agitation and problems atleast being somewhat helped and alleviated by the thoughts of getting some decent sleep...I know dr's aren't miracle workers...but when all I'm wanting is a sleep good enough that the little twitches of my fingers don't send me bolting upright and I can feel--better than I do now--then maybe Dr Peery might be a miracle worker for me....if the insurance company doesn't eff the whole thing...

more fun and games

This coming Friday 9/11, I go under the proverbial knife again..yep more surgery. This time my ENT is patching the hole in my R eardrum. Technically, there won't be much 'cutting', its really just a skin graft but since the best way to place it is thru the nasal cavity, they prefer to do it under anesthesia..

Now, my last Sx was supposed to be a 45 min procedure and ended up being 4.5 hrs and 3 day hospital stay w/ pancreatitis..I know..different body part, different circumstance, and a lot more invasive, but its still a little sobering

I honestly stop and think to myself--the last one was a truly life & death necessary kind of Sx (gallbladder removal). This one is more of a quality of life to improve the fact that I can't hear well out of ears and they continually pop, hurt, drain, and are susceptible to infections.. Am I playing Russian Roulette, being a fool? Considering this will be the 9(?) surgery on my ears...I'm probably what people would call foolish anyway, but most was done long before age of consent (pre 16)

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.