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My Life with Multiple Sclerosis!

Life with Multiple Sclerosis

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2010 July 22 : Mayo - The end...

Ok,the last message was a lot of ranting and crying... I'll try to just put the facts down here instead...

We're in trouble.. We thought we had dotted all of our i's and crossed all of our t's. From the insurance end we apparently set fire to the house while drinking heavily and singing round-the-rozy...

They (so far) are not going to pick up the tab... And they (the Mayo) haven't done anything but open up more questions... so... Lose/lose...

Sorry the last two posts were a bit harsh and cruel but... I wanted to capture my feelings at the time... So... Language and attitude went a bit 'lose'. So please forgive me...

The the highlights from the trip:
- May have Cancer (yet undetermined due to $ situation). Still need to have another Cystoscopy done...
- They can do nothing for the 'burning' hands/feet thing or the fact that I can no longer walk... Wheelchair is for sure in my very immediate future in some form... Without question. Nothing to do... No hope for the future... Just lots of drugs...
- And they tacked a few big zeros onto what I expected to be paying for the treatments while here...
Read More Posted by: SirGCal 1 Comment

2010 July 22 : @#$% Mayo... What a mistake... INSURANCE won't cover Mayo...

OHHH GOD the nightmare begins...

Something deep down told me the Mayo was a mistake from the start...

Anyhow; we've been here for almost 2 weeks... Stuff was going smoothly. I wasn't worried about most items since the insurance covers most 'things'. But the telescope up the who-who made me curious... So... We called the insurance just to make sure...

The rude awakening begins with "We don't cover ANYTHING at the Mayo Clinic"... The heart attack begins... We've been filling out insurance papers for the last two months getting ready for this... NEVER did they say 'you have to do this or that' or 'you are on your own'.

Needless to say, we stopped all testing instantly... The remaining visits I had, have now been canceled. I had three more visits today including the Cystoscopy, a followup with my Nero... And the Urologists tomorrow morning before the flight out... But now; nothing... It's over... We're not done and I'm already looking to sell the house to try to pay for this... And anything else I can think of (if it wasn't stolen while we were gone...).
Read More Posted by: SirGCal Comment

2010 July 21 : Mayo Part 4; Getting to the scary bits...

Well... Honestly, right now, for the burning... All I got is: "sucks to be you... go get measured for a wheelchair...". To say the least, I'm pretty pissed off... The whole 'Mayo' experience has been a near nightmare...

To add salt to the wound, I thought while I was here I'd do the Urologist stuff I've been thinking about which has now EXPLODED... I was supposed to be done now.. No more to do. Instead I have to get up at 5 AGAIN TOMORROW (I'm @#$%ing suck of getting up so @#$% @#$% early...I'm an early bird anyhow but this is just freakin unnatural... and two weeks strait... I'm losing my freakin mind...) Xrays of my kidneys, and RAMMING A CAMERA UP MY PEEPEE!!! @#$)@#$)_*@#)($*@#$!!! It was bad enough I had to learn to self-cathader yesterday (OHH MY GOD that's freakin PAINFUL!!!)... Now they're going to stick a camera on it and a laser and take pictures and shoot stuff... Why not have chipmunks chew on my testicles while you're in there... Cover all your pain basis and make sure you don't leave me feeling any better...

Right now I HATE THIS @#$%ING PLACE! I want to go home, get my wheelchair.. and my dog... @#$# the world... And honestly, if they send me a bill, I think my credit can kiss my @$$ too cause they sure can... This has been a totally unproductive waste of time and money... I sold my motorcycle... And that isn't even going to cover the hotel... Bob picked up the air fair (thanks bud!)... And from what I'm finding, any real-world full-time wheel chairs are going to be 3-10 GRAND!!!! It might actually be CHEAPER for me to get a power chair instead... Isn't that totally @#$%ed up?!?

You can tell my attitude (and language) has gone really down-hill from my normal lately... This was a last hope trip... And it ended up being a worst nightmare instead. I'd be a LOT better off just staying at home.. With the money I spent; I could have bought the wheelchair, finished the Jeep, even put the modifications into the house that will need to be done... And that's just what I already know... I absolutely FEAR the bill that's coming... I'm guessing 50-100 grand... No joke... They don't check or ask anything.. Just go here, do this... They won't even see if insurance will cover it until it's all over and done with. And if not, I'm responsible...

Well, I have to get drunk before someone shoves Hubble inside my wiener... Ohh wait.. I CAN'T EAT OR DRINK ANYTHING UNTIL AFTER THE TEST TOMORROW!!!! Just shoot me now... PLEASE!!! But watch; with my current luck; I'm going to have prostate or bladder cancer or stones or something just to top it all off... I'm really starting to believe GOD hates me... If there even is one... If there is, he sure hasn't been over my shoulder this month...
Posted by: SirGCal Comment

2010 July 20 : Mayo Part 3; Beginning of Week 2...

Well, first the off-topic soap-box:

I warned work about moving from HP to Dell as their IT Hardware Provider... Dell just is not up to the par of HP... Not even close... But it's all about bottom line right?

Well, I worked there for 14 years using my own hardware (Almost all HP by the way actually). Never a problem. For my last upgrade, work finally gave me a company laptop. Mine was aging and I was due to replace it anyhow and they had me in the list to give a new one too after the last round of unpleasantness provided a surplus.

Anyhow, they thought they were doing me a favor giving me the 'newest' one in the group... If I had known, I'd have gladly traded one of them for their 'old' unit... Problem 1) Battery life (or lack there-of). They had to replace the 'Japan only' micro-battery with a real one... ($300+). Problem 2) Screen failed three times. Tired of dealing with the normal slow routes of repairs, I fixed it myself the third time (bad solder). Since it's worked OK but makes noise (weird for a screen. Loud caps.). Problem 3) Now, when I really need it; the space-bar is failing... It's like it's warped from use. And I'm NOT a hard typer either... I took it apart and tried to tweak the plastic springs around... got it sort-of working...

But enough of that... Back to the Mayo...
Read More Posted by: SirGCal Comment

2010 July 16 : Mayo Part 2; end of week 1

Well,it's been a week...
Went through a ton of different tests and scans and shocks and pokes... But it seems all for not... The doctor still thinks it is just my MS... (Which I find really strange since my MS Specialist from Ohio does not...) He also says there is nothing we can do to fix me... We can however help the pain differently than we have been. He suggested a few dozen different pain killers... He also suggested over time the body may repair itself.

Although; he said the Milan was NOT dead material as I've always been told. He said that it indeed repairs itself... This makes no sense to me because then why would we need stem cell research to grow new ones anyhow?!? This is contradictory to everything I've ever heard/read about how the Milan works...
Read More Posted by: SirGCal Comment

2010 July 13 : My day at the Mayo Clinic - Part 1

I don't know if it is from the trip or what but today I am SOOO tired. I'll bet the doctor thinks I'm drunk or stoned because I'm simply literally falling over sleepy. Seeing-double and falling-over sleepy...

Anyhow, the trip was not what I expected.

1) I thought I was coming to see a panel of doctors... No.. Just one like any other doctor's appointment. My hopes of being away from any predisposition initial thoughts is again out the window. Just one doctor... That's a long trip for just one doctor...

2) My worst fears seem to have been realized... "It's just your MS" actually came out of his mouth... I almost punched him in the nose... This is doubly-doubting to me when my personal MS specialist strongly suggests this is NOT my MS...

I think this experience solidifies in my mind that no doctors have a clue about MS and it is simply used as a wrap-all for stuff they don't understand. That's the only reason so many "MS" patients have no two alike situations.

So; it looks like I'm very much looking at a lifetime of illicit pain medication and depressed living... The dream is shattered... Somehow I knew this was going to happen before I even came.

Still, somehow he seems to think they can improve my situation... We'll see I guess... Another 24 hour pee test... (again, feels like just being put through the paces... Just following their little check list and no out of the box thinking... all for not...)
Posted by: SirGCal Comment