I'm torn.
I have mixed emotions.
On the one hand I'm SO glad the 2-year long campaigns for the next President of the United States is drawing to a close. It's been a long, annoying 2 years (with the last 7 weeks being nearly intolerable!) I won't miss the name calling, the lies, the trivial arguments that somehow trump the more important problems in our country and the world, the robo-calls, the solicitors bothering me at home, at the stores, on street corners, on the radio, on the TV, and on the internet. It will be so good to have all this divisive rhetoric cease (at least for 2-3 more years.)
On the other hand; damn has this been an interesting rollercoaster of a ride!?!
It's been funny and sad to watch all these politicians duke it out for the role of The Ultimate "Biggest Loser". The politics of politics is the realm of the absurd and it's been one hell of a show!
That part I will miss.
One way or another (barring another Florida-2000 fiasco), in just 9 more days we will finally have a difinitive answer (as opposed to skewed polls) as to who has won this round of American Idol, I mean, American President.
Then...well, how can it possibly get any worse?
RobMac
Monday, October 27, 2008
Tuesday, September 09, 2008
Home Again
Back home - yup, you guessed it, from yet another hospital stay.
This one due to a small-bowel obstruction.
I went to the local ER Saturday night/Sunday morning at 3:30am.
I was transported to Temple University Hospital in center city Philadelphia Sunday night around 8:30pm for monitoring by specialists and if emergency surgery was necessary, that was the place to be.
Here's how it came about: Saturday night around 9:00pm I started getting pains in my abdomen, my ileostomy stopped working and I became nauseous. By 3am that night (Sunday morning) I was vomiting up a storm and the pain was excrutiating.
So I called dad and he took me to the LBH ER.
With a small-bowel obstruction, it could be that food-stuffs have gathered and blocked the exit somewhere within the small intestine tract - OR - it could mean that a part of the small intestine had become twisted around itself (thus preventing any further passage) - if it was the latter then emergency surgery would have been required (and that's why I was sent, via ambulance, to Temple.)
I woke up this morning and gas was passing through my system (a good sign since if it was twisted nothing, not even gas, could make it by the obstruction) - then around 7am I passed allot of stool and gas and had to empty my ostomy pouch - then drained it again around 8am. Finally around 11am I emptied a 3rd bagful - so it looked like it was a food blockage and it had dislodged itself and was now passing.
During the time in LBH ER I had an NG tube (or nasogastric tube) shoved up my nose and down my throat into my stomach to help drain the gas/bile from my stomach and the intestines prior to the obstruction - to relieve the pressure. That tube was removed around 2:30pm today and I can still feel it down my throat (that will take a few days to go away as it's very unpleasant to have tubes shoved into places they really shouldn't be.
So, I'm back home and I am now going to bed (as I haven't slept since waking up Saturday morning...so that's, what, 2 1/2 days so far without sleep....so I need some).
It's always something with me.
Ok, drama over (some details were left out to keep the facts clear and concise, but more happened and it was I that instigated being released from Temple since they wanted to keep me a few more days - but that was no unnessecary since the blockage cleared and they refused to give me any pain management.)
I go for my regular ESWL procedure next Monday, September 15, but that should be a quick out-patient procedure.
RobMac
This one due to a small-bowel obstruction.
I went to the local ER Saturday night/Sunday morning at 3:30am.
I was transported to Temple University Hospital in center city Philadelphia Sunday night around 8:30pm for monitoring by specialists and if emergency surgery was necessary, that was the place to be.
Here's how it came about: Saturday night around 9:00pm I started getting pains in my abdomen, my ileostomy stopped working and I became nauseous. By 3am that night (Sunday morning) I was vomiting up a storm and the pain was excrutiating.
So I called dad and he took me to the LBH ER.
With a small-bowel obstruction, it could be that food-stuffs have gathered and blocked the exit somewhere within the small intestine tract - OR - it could mean that a part of the small intestine had become twisted around itself (thus preventing any further passage) - if it was the latter then emergency surgery would have been required (and that's why I was sent, via ambulance, to Temple.)
I woke up this morning and gas was passing through my system (a good sign since if it was twisted nothing, not even gas, could make it by the obstruction) - then around 7am I passed allot of stool and gas and had to empty my ostomy pouch - then drained it again around 8am. Finally around 11am I emptied a 3rd bagful - so it looked like it was a food blockage and it had dislodged itself and was now passing.
During the time in LBH ER I had an NG tube (or nasogastric tube) shoved up my nose and down my throat into my stomach to help drain the gas/bile from my stomach and the intestines prior to the obstruction - to relieve the pressure. That tube was removed around 2:30pm today and I can still feel it down my throat (that will take a few days to go away as it's very unpleasant to have tubes shoved into places they really shouldn't be.
So, I'm back home and I am now going to bed (as I haven't slept since waking up Saturday morning...so that's, what, 2 1/2 days so far without sleep....so I need some).
It's always something with me.
Ok, drama over (some details were left out to keep the facts clear and concise, but more happened and it was I that instigated being released from Temple since they wanted to keep me a few more days - but that was no unnessecary since the blockage cleared and they refused to give me any pain management.)
I go for my regular ESWL procedure next Monday, September 15, but that should be a quick out-patient procedure.
RobMac
Thursday, June 12, 2008
...And It Only Took Them Eleven Months!
Some long running drama finally reached an end yesterday.
First, a little background for those not following my trials and tribulations:
On June 1, 2006 I applied for Disability through the Railroad Retirement Board (hereafter "RRB"), since I worked for Amtrak I was not eligible for Social Security Disability, or ANY SSI programs for that matter.
In March of 2007 my Disability was finally granted (after many RRB-scheduled doctor appointments, psychologists, and tons of paperwork), but instead of my original application for a Disability Onset Date of June 1, 2005 (which was 1 year previous to my filing, that's as far back as I could claim although I have been unable to work since January of 2003).
This gave me a monthly Annuity starting in December 2006 (since there is a 5 month "waiting period" from the Onset Date), and I wouldn't receive Medicare coverage for 30 months, yes THIRTY, due to the Federal Government's own seperate "waiting period" for benefits.
So no Medicare coverage until December 2008.
With my chronic medical problems (Crohn's Disease, kidney stones, frequent hospitalizations, yada yada yada) I could not afford (quite literally) to get so sick as to require hospitalization until December 2008!!
I immediately asked for a reconsideration of the Onset Date, and was promptly denied. The RRB felt confident that I haven't been sick since 1996 and was somehow able to (but refusing to?) work since January 2003!
I then officially applied for an Appeal of the decision.
And then I waited....and waited....and in the time between my application for Appeal and the actual scheduling of an Appeal Hearing I could have had a baby (if I were female, of course).
Yes, it took the RRB 9 months just to schedule a Hearing!
Finally, I had my "date in court" on March 18, 2008. I presented my evidence (which was plentiful - 13 years' worth by this point) and pleaded my case for granting my Disability Onset Date to be moved back one year (the furthest I would be eligible for, so why fight for more?) to June 1, 2005. This would give me not only an additional year's worth of back-Annuity (almost $15,000) but more importantly, it would activate my Medicare coverage effective December 2007! (meaning NOW)
This was most important because in the 2+ years that I have been unable to afford to see any doctors for any of my ongoing conditions (Gastroenterologist, Urologist, Nephrologist, Neurologist, and General Doctors for everything else), my conditions have gotten increasingly worse, which means any need for a hospital would be impossible to afford.
I was promised a decision by the Hearing's Officer "within 45 days" (from March 18 meant by May 2, 2008).
As expected, May 2, 2008 came and went and I never heard a word. (I say "as expected" because that's the way my luck works - against me)
So I called 2 weeks past the May 2 deadline and was told that the Hearing's Officer was "sick for a few days in April", so it would be "another two to three weeks" before a decision could be made. How "a few days" delays a decision by "2 to 3 weeks" is beyond me, but this is a display of typical delay tactics.
Now, in the meantime, my worst fears became reality when I was stricken with Cluster Headaches (CH's) daily since January 28, 2008 and on the night of May 14 I had to be taken to the local hospital's ER. Some pain drugs and a CT Scan of my head later revealed that at least there was no tumor causing my CH's but my left eye is going out-of-focus and was most likely the culprit for the severe physical pains. I was advised to go to Wills Eye Clinic in downtown Philadelphia (for superior low-cost eye examinations). The ER bill alone (plus the CT Scan came to almost $10,000 - of which I don't have, of course).
The Wills Eye Clinic was a one-time $70 fee (a 33% discount for those of us without medical coverage and living below the poverty line). So, with a Urinary Tract Infection (hereafter "UTI"), my father & I rode the local train into town and I walked the 4 1/2 blocks to Wills Eye Clinic and had my eyes examined. My left eye was going bad and for the first time in my life I required glasses. So another $100 for glasses. One problem solved (although it costs more than I could ever hope to pay back).
Then the UTI got worse, giving me nausea, blood, lightheadedness, and on the morning of May 25 I again had to be taken to the ER due to severe pain in the right kidney and the lack of urine production. In November of 2005 I had the same symptoms and once the urine stopped passing I wound up in ICU for 5 days. My kidneys stopped in 2005 and I very nearly bit the big one! This was turning out to be a repeat, but while I had Insurance back in 2005, I am still waiting to hear from the RRB about my Appeal (I called the RRB for an update again and the message I left on the Hearing Officer's voicemail went completely unanswered) so I still have none, and this could be VERY bad and VERY expensive, but I had no choice left to me. It turns out I had (and still have) 2 very large (15mm) kidney stones - one in each kidney! I wound up being admitted for 4 days.
Since the hospital could do nothing to help the process, they let me out (also, the bills that were being racked up could never be paid in full - and they knew this so they kicked me out). Of course, a few days later I wound up back in the hospital for 5 more days, this time with an infection. While there the doc inserted 2 stents into my ureters (one to each kindey). Again, after 5 days they kicked me out.
This past Tuesday I went back in to have the right kidney stone smashed up in a Lithotripsy procedure. It's normally an outpatient procedure, but of course I was admitted overnight for "observation". The stone was demolished as expected, and now I'm just waiting for the pieces to pass out of me. I still have the stents (and probably will for a few months), and will soon have to go back and have the left stone taken care of.
Now, we finally get to the update; When I came home from this procedure on Wednesday, a letter from the RRB was waiting in my mailbox.
This was it. I was finally going to have an answer.
[Though I always expected it to be a denial - this way I didn't get my hopes up to be fatally crushed by the inevitable bad news]
The Hearing's Officer found in the course of the hearing and evidence provided that I have indeed been permanently disabled since January 2003, and this was proof enough that my Disability Onset Date should be moved from June 1, 2006 to the requested June 1, 2005!
I won!!!
After a year of fighting, I finally fucking WON!
The paperwork for the Medicare is "being processed" by the RRB on my behalf and so also should be year's worth of back-Annuity owed (December 2006 to December 2007).
Hopefully the Medicare information will come quickly and since the new Onset Date makes the Medicare effective December 2007, these recent hospital bills (that have to add up to at least $100,000) should be covered by whatever Medicare normally covers.
[This will all have to be worked out once I receive the information]
So, 40 days after the initial promised May 2 decision date, they grant me my Appeal.
Now I can start seeing all of my doctors again, find out what my physical state really is, and try to agressively fix all my ills (or at the very least, control them) and try to get some sense of a "normal life" back.
Things are starting to look up as opposed to one bad thing after another hitting me time and time again. Now, I have the means to actively fight back.
RobMac
First, a little background for those not following my trials and tribulations:
On June 1, 2006 I applied for Disability through the Railroad Retirement Board (hereafter "RRB"), since I worked for Amtrak I was not eligible for Social Security Disability, or ANY SSI programs for that matter.
In March of 2007 my Disability was finally granted (after many RRB-scheduled doctor appointments, psychologists, and tons of paperwork), but instead of my original application for a Disability Onset Date of June 1, 2005 (which was 1 year previous to my filing, that's as far back as I could claim although I have been unable to work since January of 2003).
This gave me a monthly Annuity starting in December 2006 (since there is a 5 month "waiting period" from the Onset Date), and I wouldn't receive Medicare coverage for 30 months, yes THIRTY, due to the Federal Government's own seperate "waiting period" for benefits.
So no Medicare coverage until December 2008.
With my chronic medical problems (Crohn's Disease, kidney stones, frequent hospitalizations, yada yada yada) I could not afford (quite literally) to get so sick as to require hospitalization until December 2008!!
I immediately asked for a reconsideration of the Onset Date, and was promptly denied. The RRB felt confident that I haven't been sick since 1996 and was somehow able to (but refusing to?) work since January 2003!
I then officially applied for an Appeal of the decision.
And then I waited....and waited....and in the time between my application for Appeal and the actual scheduling of an Appeal Hearing I could have had a baby (if I were female, of course).
Yes, it took the RRB 9 months just to schedule a Hearing!
Finally, I had my "date in court" on March 18, 2008. I presented my evidence (which was plentiful - 13 years' worth by this point) and pleaded my case for granting my Disability Onset Date to be moved back one year (the furthest I would be eligible for, so why fight for more?) to June 1, 2005. This would give me not only an additional year's worth of back-Annuity (almost $15,000) but more importantly, it would activate my Medicare coverage effective December 2007! (meaning NOW)
This was most important because in the 2+ years that I have been unable to afford to see any doctors for any of my ongoing conditions (Gastroenterologist, Urologist, Nephrologist, Neurologist, and General Doctors for everything else), my conditions have gotten increasingly worse, which means any need for a hospital would be impossible to afford.
I was promised a decision by the Hearing's Officer "within 45 days" (from March 18 meant by May 2, 2008).
As expected, May 2, 2008 came and went and I never heard a word. (I say "as expected" because that's the way my luck works - against me)
So I called 2 weeks past the May 2 deadline and was told that the Hearing's Officer was "sick for a few days in April", so it would be "another two to three weeks" before a decision could be made. How "a few days" delays a decision by "2 to 3 weeks" is beyond me, but this is a display of typical delay tactics.
Now, in the meantime, my worst fears became reality when I was stricken with Cluster Headaches (CH's) daily since January 28, 2008 and on the night of May 14 I had to be taken to the local hospital's ER. Some pain drugs and a CT Scan of my head later revealed that at least there was no tumor causing my CH's but my left eye is going out-of-focus and was most likely the culprit for the severe physical pains. I was advised to go to Wills Eye Clinic in downtown Philadelphia (for superior low-cost eye examinations). The ER bill alone (plus the CT Scan came to almost $10,000 - of which I don't have, of course).
The Wills Eye Clinic was a one-time $70 fee (a 33% discount for those of us without medical coverage and living below the poverty line). So, with a Urinary Tract Infection (hereafter "UTI"), my father & I rode the local train into town and I walked the 4 1/2 blocks to Wills Eye Clinic and had my eyes examined. My left eye was going bad and for the first time in my life I required glasses. So another $100 for glasses. One problem solved (although it costs more than I could ever hope to pay back).
Then the UTI got worse, giving me nausea, blood, lightheadedness, and on the morning of May 25 I again had to be taken to the ER due to severe pain in the right kidney and the lack of urine production. In November of 2005 I had the same symptoms and once the urine stopped passing I wound up in ICU for 5 days. My kidneys stopped in 2005 and I very nearly bit the big one! This was turning out to be a repeat, but while I had Insurance back in 2005, I am still waiting to hear from the RRB about my Appeal (I called the RRB for an update again and the message I left on the Hearing Officer's voicemail went completely unanswered) so I still have none, and this could be VERY bad and VERY expensive, but I had no choice left to me. It turns out I had (and still have) 2 very large (15mm) kidney stones - one in each kidney! I wound up being admitted for 4 days.
Since the hospital could do nothing to help the process, they let me out (also, the bills that were being racked up could never be paid in full - and they knew this so they kicked me out). Of course, a few days later I wound up back in the hospital for 5 more days, this time with an infection. While there the doc inserted 2 stents into my ureters (one to each kindey). Again, after 5 days they kicked me out.
This past Tuesday I went back in to have the right kidney stone smashed up in a Lithotripsy procedure. It's normally an outpatient procedure, but of course I was admitted overnight for "observation". The stone was demolished as expected, and now I'm just waiting for the pieces to pass out of me. I still have the stents (and probably will for a few months), and will soon have to go back and have the left stone taken care of.
Now, we finally get to the update; When I came home from this procedure on Wednesday, a letter from the RRB was waiting in my mailbox.
This was it. I was finally going to have an answer.
[Though I always expected it to be a denial - this way I didn't get my hopes up to be fatally crushed by the inevitable bad news]
The Hearing's Officer found in the course of the hearing and evidence provided that I have indeed been permanently disabled since January 2003, and this was proof enough that my Disability Onset Date should be moved from June 1, 2006 to the requested June 1, 2005!
I won!!!
After a year of fighting, I finally fucking WON!
The paperwork for the Medicare is "being processed" by the RRB on my behalf and so also should be year's worth of back-Annuity owed (December 2006 to December 2007).
Hopefully the Medicare information will come quickly and since the new Onset Date makes the Medicare effective December 2007, these recent hospital bills (that have to add up to at least $100,000) should be covered by whatever Medicare normally covers.
[This will all have to be worked out once I receive the information]
So, 40 days after the initial promised May 2 decision date, they grant me my Appeal.
Now I can start seeing all of my doctors again, find out what my physical state really is, and try to agressively fix all my ills (or at the very least, control them) and try to get some sense of a "normal life" back.
Things are starting to look up as opposed to one bad thing after another hitting me time and time again. Now, I have the means to actively fight back.
RobMac
Thursday, May 22, 2008
Indiana Jones And The Fate Of A Pathetic Shut-in
Well, it's finally here; the release date of the fourth Indy movie: "Indiana Jones and the Kingdom of the Crystal Skull".
I was hoping my father and I would go see it, but unfortunately my uncle had some medical problems last night and so my folks are going to visit him in the hospital.
"Why not just go yourself?" you may ask...well, I can't (and wouldn't).
I "wouldn't" because this is the type of thing I'd enjoy sharing with my dad, and "can't" because I am on some pain meds, and driving would be unsafe and irresponsible. So it's at home I stay.
I won't be able to see it until at least Tuesday.
The pain meds I'm on are for Cluster Headaches (which have been chronic since January 28, 2008), most likely due to a faulty left eye. I have an appointment tomorrow at Will's Eye in center city Philadelphia (at their Clinic since I have no Insurance...still), so I can't see it tomorrow, and I will NOT go to a mall or movie theater over the Memorial Weekend, so Tuesday is the next earliest opportunity.
I am still waiting for word on the status of my Disability Appeal. It is now 3 weeks past the date the Railroad Retirement Board assured me I'd have an answer. It's now been 65 days since my Appeal Hearing.
So I continue to wait while my eye gets worse, my kidneys may still be working at 40% (I haven't been able to afford to see any doctors to check up on them), Cluster Headaches continue daily (112 days and counting), I have an new urinary tract infection (from another non-moving kidney stone), I'm coming back off a high-dose Prednisone treatment (so I'm very stiff and emotional), and I continue to have no money (my bank account this morning reads "$2.33").
AND - my TV died (again - it died late March, took 3 weeks and $530 to fix, and worked fine for almost a month), so I am without any entertainment in the meantime except the Interwebs, but that holds my interest for about an hour....so for 23 hours I'm bored.
[My TiVo is filling up, but since I have no TV I don't know what's on it, what will be bumped off or how long it'll be before the TV is repaired......]
Anyway, my life continues to suck big floppy donkey dick.
Yeah, it really is that bad!
RobMac
I was hoping my father and I would go see it, but unfortunately my uncle had some medical problems last night and so my folks are going to visit him in the hospital.
"Why not just go yourself?" you may ask...well, I can't (and wouldn't).
I "wouldn't" because this is the type of thing I'd enjoy sharing with my dad, and "can't" because I am on some pain meds, and driving would be unsafe and irresponsible. So it's at home I stay.
I won't be able to see it until at least Tuesday.
The pain meds I'm on are for Cluster Headaches (which have been chronic since January 28, 2008), most likely due to a faulty left eye. I have an appointment tomorrow at Will's Eye in center city Philadelphia (at their Clinic since I have no Insurance...still), so I can't see it tomorrow, and I will NOT go to a mall or movie theater over the Memorial Weekend, so Tuesday is the next earliest opportunity.
I am still waiting for word on the status of my Disability Appeal. It is now 3 weeks past the date the Railroad Retirement Board assured me I'd have an answer. It's now been 65 days since my Appeal Hearing.
So I continue to wait while my eye gets worse, my kidneys may still be working at 40% (I haven't been able to afford to see any doctors to check up on them), Cluster Headaches continue daily (112 days and counting), I have an new urinary tract infection (from another non-moving kidney stone), I'm coming back off a high-dose Prednisone treatment (so I'm very stiff and emotional), and I continue to have no money (my bank account this morning reads "$2.33").
AND - my TV died (again - it died late March, took 3 weeks and $530 to fix, and worked fine for almost a month), so I am without any entertainment in the meantime except the Interwebs, but that holds my interest for about an hour....so for 23 hours I'm bored.
[My TiVo is filling up, but since I have no TV I don't know what's on it, what will be bumped off or how long it'll be before the TV is repaired......]
Anyway, my life continues to suck big floppy donkey dick.
Yeah, it really is that bad!
RobMac
Wednesday, January 30, 2008
Kidney Stones & Migraines
Kidney stone pains for three days, migraine for two of those days, nausea, insomnia, loneliness & severe depression all conspire to make me wish I was dead.
I really do want to die.
Who would care?
I have no friends.
I have no Life.
I can barely see straight due to the intense, unending, and debilitating pain.
No pain meds. Nothing would work anyway. I am immune to Percocet, not that I have any anyway, and there's no point in trying to get any.
The only person I talk to is my mother.
My dad & I talk once in a while, not every day.
I haven't talked to my sister for almost a month. We're not mad or anything, she's just busy, living her life, teaching, being a wife and mother to 3 small children. She's busy. I don't call her, and she doesn't call me.
It's just the way it is.
I have no one else I talk to, aside from an occasional email from people I used to see regularly, but now don't because I am a shut in and they live too far to see often.
I have no one.
Do you have ANY idea what that's like?
Of course not. You have friends. You have a Life.
You have pain-free days. You are normal.
Chronic pain (13 years now and counting), chronic depression because of the pain, chronic mental exhaustion from being depressed and in pain - all you want is an end.
Fate is not so kind to me.
My suffering will endure forever because ending it would be too kind.
I hate myself.
I hate everyone else for going on while I can't.
I hate hating everyone and everything.
I hate Life.
I want to die.
Please...
I really do want to die.
Who would care?
I have no friends.
I have no Life.
I can barely see straight due to the intense, unending, and debilitating pain.
No pain meds. Nothing would work anyway. I am immune to Percocet, not that I have any anyway, and there's no point in trying to get any.
The only person I talk to is my mother.
My dad & I talk once in a while, not every day.
I haven't talked to my sister for almost a month. We're not mad or anything, she's just busy, living her life, teaching, being a wife and mother to 3 small children. She's busy. I don't call her, and she doesn't call me.
It's just the way it is.
I have no one else I talk to, aside from an occasional email from people I used to see regularly, but now don't because I am a shut in and they live too far to see often.
I have no one.
Do you have ANY idea what that's like?
Of course not. You have friends. You have a Life.
You have pain-free days. You are normal.
Chronic pain (13 years now and counting), chronic depression because of the pain, chronic mental exhaustion from being depressed and in pain - all you want is an end.
Fate is not so kind to me.
My suffering will endure forever because ending it would be too kind.
I hate myself.
I hate everyone else for going on while I can't.
I hate hating everyone and everything.
I hate Life.
I want to die.
Please...
Sunday, January 13, 2008
In Memoriam
Today marks the beginning of
the fifth year without my best friend
MICHAEL DEAN COHEN
(1956 - 2004)
I miss you, buddy.
the fifth year without my best friend
MICHAEL DEAN COHEN(1956 - 2004)
I miss you, buddy.
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