Frustrating!

[alan]

In the week and a half, I've been to three doctors (I actually managed to get to each one - I'm proud of myself, even if the office is only ten minutes away.) First was an orthopedist. His take - yes, you have a scoliosis, yes, it's bad enough to affect your balance and function, no, it's not bad enough for surgery, I don't know about popping shoulder blades, I'm referring you to partner, a shoulder expert.

Shoulder expert says yes, your scapulas do pop, it probably is snapping scapula syndrome caused by your winged scapulas and scoliosis, no, surgical treatment isn't warranted. I'm referring you to our physiatrist.

Physiatrist says, I'm not sure why he sent you to me. I haven't worked with quads and central pain since my training days. Yes, your shoulder blades pop, and so does the skin between them when you move your arms. She's going to give me cortisone and local anesthetic injections into the bursa areas between the scapulas and ribs tomorrow, to see if they provide any relief at all (they won't help the burning skin pain - that's central - but might help the internal pain around the blades.) She also wrote a scrip for a PT to check me out.

Maybe I should just let every doctor in that group look at me - I can't get worse results than I have so far. :(

[David Berg]

Geez!!! Alan, isn't there a physiatrist in your area who has experience with central pain?!? Yeah, it's important to have someone familiar with scoliosis, but that's far more common so I'd give priority to finding someone familiar with CPS. If you found someone good with that, if they didn't know enough about scoliosis they should easily be able to find sources for info on that. If the physiatrist you saw wasn't able or willing to help, don't give up. Ask lots of questions, network like mad, and keep looking for the right person to help you out.

I would definitely think that you should be able, especially in your area, someone capable of helping you deal with the scoliosis problems. Don't give up. Congrats on managing to get around so well lately, I know it took a bunch of determination on your part. I know you've been at this for a long time already, but don't give up.

[bob clark]

A friend of mine just got out of the hospital after a 6 day stay at taxpayer expense. He's 37 years old, lives with his parents, works under the table, drives a new shiny truck, gets a check every month for $800 and is on Medicaid. He injured his ankle 7 years ago in a drunken boating accident (ran into a dock) but if he can mow my lawn and scale my 50 foot antenna like a squirrel, I don't think he's still disabled in any way.

He drove to the hospital drunk and high at around 2:00AM complaining about being dizzy and losing consciousness on a few ocassions. And bleeding diarrhea for which he had already spent a few days in the same hospital a few months ago.

They gave him every test known to mankind. MRIs, CT scans, camera down into his stomach and a camera up his asshole. Had is brain monitored with electrodes because he complained of numbness on his right side. Mini-stroke fears. Had his heart monitored for a day or two and they found a common slight valve problem that many peope have but causes no problems. And practically every blood test available. And whatever else they had to offer.

He was high as kite on a morphine pump with added goodies in between all during his hospital stay. See, he has a monthly script for hydrocodone (most of which he sells or trades for crack) that the taxpayers pay for so the hospital had to keep his pain meds going for fear of withdrawal complications. Everytime I talked to him on the phone all he would do is complain about this or that in his slurred speech because he was so freakin' high. What a racket.

I would love to check into a SCI rehab center/hospital and have that type of one-stop shopping healthcare done. But no, I have to travel all over hell's half acre going from doctor office to doctor office and paying for the effort. And none of my doctors know anything about SCI and its added and differing complications.

I don't understand the people who claim that the poor and uninsured get bad healthcare here in the US. My "poor" friend got the best treatment the world has to offer and as it turned out (after 6 days in hospital) it was his 24/7 drinking (alcoholism) that caused his diarrhea and internal hemorrhoids to bleed. His dizziness was caused by all the alcohol and drugs that he does. His body was polluted with drugs and alcohol. What a big surprise that he was "dizzy"! I don't know what a 6 day hospital stay costs with all those tests but my guess would be somewhere between $50,000 - $100,000???

When he first arrived at the hospital they had him sign a form that he drove himself there and as it turned out his blood alcohol was 2.5.... over 3 times the legal driving limit. So after he was released from the hospital he was contacted by the police and issued a subpoena to appear in court. Or check into the local drug rehab center for another vacation at taxpayer's expense. It's undetermined how long his stay will be there but it'll be no less than 20 days. I just heard that he's doing very well in drug/alcohol rehab and is even a "team" leader now. I'm so proud of him. :) It's his 3rd time there to avoid jail and will probably cost the taxpayers another 10 or 20K. And I'm sure, after his release from there his first stop will be the liquor store.

But when Alan needs help he has to drive or be driven all over to different places to see different doctors who don't know squat about SCI and neuropathic and central pain. Or about his other complications either. You'd think he should be able to check into a reputable SCI rehab/hospital for a few day stay and have everything checked out by doctors who are familiar with SCI and its complications. But no, that would make too much sense. Let the ambulatory drunks check in for a 6 day hospital hiatus and be wheeled around on gurneys or wheeled beds for all the different tests while Alan struggles getting in and out of a car or van to get into his wheelchair having to worry about his bowels and bladder etc to seek mediocre at best medical treatment.

What's wrong with this picture?

[jukespin]

Good post, Bob. Third post today = 3 cup coffee motivation?

[firesmurf]

hey bob,just a thought here but there IS a number at disability where you can call to report deadbeats like this guy.how in the heck can someone become fully disabled and not able to actually DO any type of work from an ankle injury?geez,i had to proove to them that I could barely pick my nose(when needed of course) before I was finally granted benefits.

honestly,people like this just make things soo much harder for those of us who are truely disabled and also those who have to live like Alan,going from place to place just to find someone,anyone who can actually help us.these people just make me sick,really truely sick.this is really pathetic.

maybe a few pictures of this dude mowing his lawn and all of the other "able bodied' things he is amazingly able to do,along with an annonymous phone call or a few words in a letter would help??just a thought.he would still be able to get those benefits from the state,but they would be from a jail cell.

we recently had a 'beauty queen' here who was at one time Mrs MN who had some sort of a car accident years ago and claimed that she was soo disabled that even lifting up a gallon of milk would trigger these horrible migrane headaches.she was granted benefits on her first go round and then actually somehow was still able to compete in all of the pageants(if you have ever seen the hustle and bustle that goes on behind the scenes at a pagent where everyone is running around doing those quick dress changes and stuff like that?hmmm.) that popped up around the country.her and her husband also ran a huge business that "prepped' all these little wanna be beauty qeens of the future.she was actually filmed,I am not to sure who did all this(i think this was also some sort of court case here that she won)going scuba diving with one of those heavy air tanks on her back and playing with her little kiddies in the waters of some exotic beach and hauling all her heavy luggaage around the country...you get the picture.anyway,she was actually eventually found guilty of defrauding disability and the ins co that had paid her benefits too wanted all their money back as well as over one hundred thousand bucks she had to pay back to the govt for defrauding them out of all of those thousands of dollers.

I was soooo happy when they found her guilty.she went from living in this huge mansion like home in one of the best cities(very affluent) to now sitting in a jail cell for the like the next five to ten.now THATS justice.

i think this guy you know at the very least here needs to have his case re evaled.this is just soo sick.when you think of all the people out there who have lost homes and everything they own due to not being able to get very well deserved disability just to help them get by,and myself,we were over 5 grand just in medical dept and on the verge of actually losing our home,when thankfully at my second go round,i was finally awarded the benefits we so desperately needed.it was dec 1rst of last year and christmas was going to be hell for our family and our kids,so this was truely the best christmas present ever.but then you have someone like him getting everything he needs to continue to abuse drugs and have all his medical needs taken care of while he continues to pickle his liver,and will probably end up needing a transplant one day that will take a badly needed organ from someone who lost their liver thu no fault of their own.honestly,this guy is pathetic.

i really would start keepin track of this guys daily 'moves" and then start making some annonymous phone calls to the right people.he doesn't desreve this at all.I wonder how long it will take him to go right back to allof his 'old" ways once he is out of treatment?if this guy doesn't change after that,well,you DO have some options here ya know?we reap what we sow.okay,I am off my box now.these kind of people just make me flippin crazy.

I DO hope you can find a better doc alan,one who really understands the 'whole' you and all that you have going on,and soon.we aill all be really hoping for good things for you Alan.take care hon,Marcia

[bob clark]

Good post, Bob. Third post today = 3 cup coffee motivation?

Hi Jukespin,

Thanks for the encouraging words.

Actually no to the 3 cup coffee motivation. Are you just jealous that my GI tract can still handle a few/half dozen mugs of joe every day and yours is over the hill? Really, you have my sympathies since I held the belief that coffee was an important part of your life... a ritual of sorts. I can only imagine the condition that my GI tract will be in, in another 10 tears.... I mean years, when I reach your age.

But it's the damn gabapentin mixed with the diazepam that may be responsible for some of my "over contributing" to these forums. Since my pain is mostly gone I feel so much better and can "contribute positively" even more now! How fortunate for everyone here at CC. :) I think this madness began (getting worse) in February when I started on these two drugs. The coffee/caffeine just helps counter the down effect of the gabapentin and diazepam so I don't lay the blame on the java bean. Hey, I had 1/3 of a script of the diazepam left over this month but did run a few days short on the gabapentin. So I'm a responsible prescription drug user.... of course according to Bob's formula.

I haven't had a cup of coffee since early this morning.... only beer and whiskey now. But again, according to Bob's formula of responsibility and moderation.

I'll cut this short because I certainly wouldn't want to be known as a "rambler" and I don't want to break my drinking and writing rule.

Speaking of rambler...... my father's only new car was a 1960 Rambler. Let me tell you about some of the many trips we took in it. First we went to .................................................. .................................................. .................................................. ...............

[alan]

I liked your post, Bob. And yes, I'd like to be able to check into a hospital and get everything under the hood checked at once, but that's a no-go. Maybe I have to become a druggie/alkie to get the same care insurance cheats do. Maybe we all do.

Went back to the physiatrist today. Got the cortisone and bupivicaine shots under my shoulder blades. The doc hopes the cortisone will shrink any inflammation under them, and that might reduce the popping and some of the pain it causes on top of the central pain in that area. She did it under x-ray, to avoid puncturing lungs (good idea), and, because my scapulas are so winged, she had easier access to the areas she wanted than with a patient with normal musculature over the blades that holds them down. The cortisone should start taking effect in a week.

[David Berg]

That sounds like about the same stuff they injected in my shoulder for minor damage to my rotator cuff. I've had it done twice, first time lasted me about a year. Not sure that will mean anything as to how long it will last you, but it definitely did me some good.

[firesmurf]

I've got my fingers and anything else that will still cross for ya alan.I really hope this helps.even a little less would be very much appreciated i am sure.yea,an x ray is always a good idea when doing the injections mostly just to make sure they do things in the right place,huh?they also do this to make sure they get the full 'spread' of the cort in all the right places.if any doc at anytime ever wants to actually do any sort of injection without the use of floroscopy(i know I did not spell that right)I would go runnin on out of that place,okay,hobble,as fast as my little legs could carry me.i have heard some really bad stories about certain docs doing these things without using the x ray type of guidance,and wow they were not good outcomes.just too many possible 'wrong' places they can end up ya know/sounds like they got it right for you,or you most definitely would have known by now.

sometimes the pain will actually increase a bit before it really kicks in.this happened with my first and second shots of the three i had on my c spine years ago.the first day or two of the very first one nearly drove me insane,then the third day,wow,total relief for at least two weeks.i will be thinkin good thoughts alan.good luck,Marcia

[jukespin]

Hi Jukespin,

Thanks for the encouraging words.

Actually no to the 3 cup coffee motivation. Are you just jealous that my GI tract can still handle a few/half dozen mugs of joe every day and yours is over the hill?

No, I'm jealous that you've never had a pressure sore and I've got another, probably adding to some three score, which has gotten out of hand. I had two little ones on my butt for the past three months and kept them static with frequent changes of the chuck (underpad) I sit on and applications of an herbal salve. One's worse and I'm out of salve. I'm doing 20 second pushups every 5 minutes but it's still getting worse. I may have to be hospitalized as I've no help here and no way to further minimize my time up and do all that must be done.

I'm back to drinking a few super strong cups of coffee every other day for now. There was no ritual to the whole roasting/tasting/blending thing, just a hobby to supply a habit. It is fun though. I've always been a sloppy roaster, keeping no records and going by past experience and 'intuition'. If you'd been following my posts about it in my "Coffee" thread, you'd know that I've just been experimenting, one roast to the next, for the past two months and had succeeded in burning a hole in my kitchen lino. At the rate I'm consuming it, I've got enough roasted coffee on hand for the next month plus. On the other hand, as I may soon be in hospital again, who knows.

[bob clark]

hey bob,just a thought here but there IS a number at disability where you can call to report deadbeats like this guy.how in the heck can someone become fully disabled and not able to actually DO any type of work from an ankle injury?geez,i had to proove to them that I could barely pick my nose(when needed of course) before I was finally granted benefits.

Marcia

Hi Marcia,

This fellow, Dave my neighbor, has even stolen from me in the past. And trust me, the thought of calling the Medicaid abuse hotline has crossed my mind. He eventually worked off the money theft by mowing my lawn, doing yardwork and housecleaning etc. Of course, with a sharp eye on him whenever he's in my house. I never leave any cash laying around anymore. When I need to catheterize, out the door he goes (usually in the backyard and sits on the outdoor furniture) and it's locked behind him until I'm done. Then I let him back in as though he was my dog! It's really a sad state of affairs.

But I have a rule that I've lived by that's served me well throughout my life. And that's not to fuck around with a man's money (or his ability to earn it) or his girlfriend/wife.

And to turn him in would only hurt his parents who have already suffered enough with his antics. Both his parents and his brother have key locks on their bedroom doors and his Mom still sleeps with her purse under her pillow. His father just co-signed for Dave's new truck and only did so becase the check comes to their house or it's direct deposited into a bank account. So his truck and insurance are being paid for as long as the SSI check keeps coming. They are very nice people and to interfere would only hurt them.

And it's not my job to play detective for Medicaid. Although as a citizen I do feel some responsibility, in the scheme of things I think the better course of action is to let the professionals deal with it. If the doctors keep signing the papers for disability and writing him a script for oxy/hydrocodone every month who am I to butt in? And if Medicaid doesn't re-evaluate him and see that's he's not disabled there should be a shake-up in the procedure and I'm not going to lead the charge. I have enough problems of my own.

I do love to see wealthy people, who rip-off the system and the "little people" just out of sheer greed and not necessity, get their comeuppance, like your beauty queen example. Enron and World Com also come to mind. And the bitch Leona Helmsly etc.

I tried to check in for a day or two at Tampa General (a SCI center) and a SCI center at Shands Hospital in Gainesville (FL) but was just directed to the office of my current SCI rehab/pain specialist who supposedly has some connection to the Shands Hospital SCI center. And she just sends me around to different private imaging centers (CT scan and X-rays) and non-SCI experienced doctors. My ex-urologist did the same thing when I had an IVP done.

Why we can't just check in for a day or two every couple/few years for a re-evaluation and SCI physical at a SCI center with all the doctors that we as SCIs need, and that are all located in one place is beyond me. It's the traveling around from place to place seeing doctors who are unfamiliar with SCI and having to teach them about SCI and it's special problems, that gets me peeved.

Oh well.

[bob clark]

No, I'm jealous that you've never had a pressure sore and I've got another, probably adding to some three score, which has gotten out of hand. I had two little ones on my butt for the past three months and kept them static with frequent changes of the chuck (underpad) I sit on and applications of an herbal salve. One's worse and I'm out of salve. I'm doing 20 second pushups every 5 minutes but it's still getting worse. I may have to be hospitalized as I've no help here and no way to further minimize my time up and do all that must be done.

I'm back to drinking a few super strong cups of coffee every other day for now. There was no ritual to the whole roasting/tasting/blending thing, just a hobby to supply a habit. It is fun though. I've always been a sloppy roaster, keeping no records and going by past experience and 'intuition'. If you'd been following my posts about it in my "Coffee" thread, you'd know that I've just been experimenting, one roast to the next, for the past two months and had succeeded in burning a hole in my kitchen lino. At the rate I'm consuming it, I've got enough roasted coffee on hand for the next month plus. On the other hand, as I may soon be in hospital again, who knows.

Hi Jukespin,

I'm really sorry to hear that you're having pressure sore problems again. Especially on your butt, where I imagine you had the flap surgery done those many years ago. Can't you get a home healthcare nurse to come by and help you with them? You know as well as I that you need to stay totally off them until they're healed. And that is one boring proposition. Hook your computer up next to the bed and get a good TV with cable or HDTV to keep you entertained. And a pile of good books.

I won't comment on your "herbal salve" usage because as you probably know by now I have very little to no confidence in that herbal stuff. Talk with or see a SCI wound specialist and follow their directions.

That's my biggest fear... a pressure sore(s) on my butt. I guess I've been lucky in that regard since I don't do many weight shifts at all. And I can sit in front of this computer for 6-10 hours straight. I played some online golf last night... the drunker I got the better I played! I'm sure when I hit 60 years old (or even before) things will change for the worse so I'll need to change my lifestyle accordingly.

A few months back I tried getting some help around here.... someone to help clean and maybe shop for me through the many social services they "advertise" in the Blue Pages of the phonebook. All I got was a bunch of other numbers to call... the woman I spoke with was only on the job for 3 damn days and didn't know shit. I may, and maybe you should too, call the Independent Living Center in our areas and get some info/help from them. Hopefully, if you had some help around your house you could spend more time in bed on your sides and stomach where you belong and not have to check into the hospital.

Speaking of coffee, I burnt out my microwave oven today. One helluva big spark came out from underneath it! Scared the crap outta me... well almost. That's how I heat up my coffee water. So I had to rummage through the garage and find one of the few coffee makers I have out there, choose one, clean it up and use it. It's not quite as fast as the nuker but I'll get used to it until I get another MW oven. Amazon dot com or Newegg here I come!

Around my kitchen table there are a couple dozen burn holes. All from dropped cigarettes from when I used to get shitfaced drunk. My father had cigarette burns all around his favorite chair.... drinking, reading, smoking cigarettes and falling asleep. I guess the nut didn't fall far from the tree. I have matching burn holes/scars on both of my feet where I dropped a cigarette or hot ash inside my untied sneakers.... I thought I smelled something burning! :)

Hey, good luck with those pressure sores.... don't ignore them like you (and me) are apt to do with things that need to be taken care of pronto.

[firesmurf]

Yea Bob i can see where youre comin from too.Its just that people who abuse the system like this are the ones that make really truely disabled people who are going thru hell and losing homes due to their injuries/disablities have to wait up to like in some cases five years and beyond just to get approved for benefits.but I also figure what goes around comes around and one day,it will hit them full in the face ya know?

It was simply WONDERFUL to see this beauty queen get years in the slammer tho,god that was just great,really.If you could have seen the news footage of her and her lawyer sitting inthis flippin mansion type home in the best city on earth to live in where all the snobby people live with her dabbing her cute little nose with a hanky as she went on and on about how horrible her life really was and how she was suffering soo horribly(and of course with no make up on and no beautiful piled up hair)because of her injuries,and that she IS entitled to those benefits,well god,it just wanted to make a person puke.espescially when they showed the under cover footage of her doing all the things she said she wasn't able to do.

knowing that she is sitting in a filthy nasty jail cell instead of that wonderful house she was living in,well it just warms my heart ya know?she definitely deserved it.she was also required to actually pay back every single penny that she scammed from disability,it was well over one hundred thousand bucks.I am sure they managed to pay that all back pretty quickly given their resources.justice was most definitely served.

i can see why you wouldn't want to disrupt that dudes life and his parents too by telling disability.i wasn't aware of the circumstances,why hurt innocent people?it was just the way you described his lifestyle i got the immpression that he was living alone and also living the 'good" life too.somehow,some way,it will come back on him one day i am sure.hopefully the rest of his family wont have to suffer when it all hits the fan one day.marcia

[jukespin]

Hi Jukespin,

I'm really sorry to hear that you're having pressure sore problems again. Especially on your butt, where I imagine you had the flap surgery done those many years ago. Can't you get a home healthcare nurse to come by and help you with them? 1. You know as well as I that you need to stay totally off them until they're healed. And that is one boring proposition. Hook your computer up next to the bed and get a good TV with cable or HDTV to keep you entertained. And a pile of good books.

2. I won't comment on your "herbal salve" usage because as you probably know by now I have very little to no confidence in that herbal stuff. Talk with or see a SCI wound specialist and follow their directions.

That's my biggest fear... a pressure sore(s) on my butt. I guess I've been lucky in that regard since I don't do many weight shifts at all. And I can sit in front of this computer for 6-10 hours straight. I played some online golf last night... the drunker I got the better I played! I'm sure when I hit 60 years old (or even before) things will change for the worse so I'll need to change my lifestyle accordingly.

A few months back I tried getting some help around here.... someone to help clean and maybe shop for me through the many social services they "advertise" in the Blue Pages of the phonebook. All I got was a bunch of other numbers to call... the woman I spoke with was only on the job for 3 damn days and didn't know shit. I may, and maybe you should too, call the Independent Living Center in our areas and get some info/help from them. Hopefully, if you had some help around your house you could spend more time in bed on your sides and stomach where you belong and not have to check into the hospital.

Speaking of coffee, I burnt out my microwave oven today. One helluva big spark came out from underneath it! Scared the crap outta me... well almost. That's how I heat up my coffee water. So I had to rummage through the garage and find one of the few coffee makers I have out there, choose one, clean it up and use it. It's not quite as fast as the nuker but I'll get used to it until I get another MW oven. Amazon dot com or Newegg here I come!

Hey, good luck with those pressure sores.... don't ignore them like you (and me) are apt to do with things that need to be taken care of pronto.

Thanks Bob.

1. Not really http://www.aquilacorp.com/ & http://www.usatechguide.org//itemreview.php?itemid=10

Of course by the time I got my Dr. to create and submit the TAR forms, medical to approve it and my vendor to order, secure and ship it to me, this pressure sore would be to the bone. I'll try starting the wheels in motion though as I'll have to get something like this not to wind up going the route of Chris Reeve. 72 is looking a long, long way away. Maybe you'll get to do that waving much sooner than I'd hoped.:D

2. Be that as it may, I held the PS that's giving me trouble at bay for almost three months with a "little dab" of the herbal neem/rosemary salve a few times a day. Only after I didn't have enough to dab it sufficiently did it start getting away from me.

On the micro, don't you have some thrift stores you could check out. I got my present micro for ten bucks over four years ago and it's still going strong, er, less strong but it just take 30% longer than "recommendations" to get things thoroughly nuked. Still works fine as far as I'm concerned.

[bob clark]

Hi Jukespin,

No doubt they are great cushions. But you're getting kinda old and your body's healing powers aren't what they used to be. Especially with your pressure sore history. You SHOULD be off those pressure sores totally, get them completely healed and then use one of those cushions for prevention. You'll need it professionally fitted and even "programmed" to relieve the exact area where your sores are. It's difficult to know, by yourself, just where on a cushion your sores line up. If they're lined up with the wrong air cells perhaps even more pressure would be put on them. I'm not a pressure seating expert but I can't tell exactly where on my Jay 2 cushion my most vulnerable areas are situated.... and I've been using a Jay 2 for 15 years.

I wish you could get a home healthcare nurse to visit everyday and even a part time housekeeper/helper there so you could spend more time in bed and off your butt. By the time they're healed maybe the paperwork for one of those cushions will have gone through and you could worry about prevention of further deterioration instead of trying to heal those long suffering wounds with an herbal salve.

Are you sure they're not infected. You should have them cultured to determine that. Ask your doctor about it tomorrow.

Ask your doctor for a prescription or whatever the protocol is for getting a home healthcare nurse to visit. You're definitely a "medically necessary" candidate for one. Then see if there is some program in your area that provides a little housekeeping help to people so they can retain their independence. Hey, I'd love to get a little housekeeping help here... and maybe even some "Meals on Wheels" if the menu was cool, but I don't think I qualify.... yet.

Have you called the Independent Living Center in your area yet to see what options are available to you?

Hey, after you get those sores healed and the possibility of septicemia annulled maybe you'll see me pass by in the basement of the hospital, sheet over my face, being rolled into cold storage!

[alan]

It's been a lousier week than usual here, but I have no clue why. Added edge to the sharpest pains, queasier stomach (so I'm eating even less than my usual very little), and my mood sucks because of these. It seems like my seating position worsens by the day, as it gets more difficult to reach my keyboard and other things (I should get a shirt covered with question marks like the Riddler wore on the old "Batman show, as I feel that my torso is shaped like a torqued question mark. But despite the trouble my scoliosis causes, it's not bad enough to treat surgically. Bah. Spring and summer are the seasons I used to ride around my neighborhood every day - I haven't been able to do that for years due to the seating position and upper back pain.) The cortisone shots didn't wind up helping - my scapulas are still popping to bat the band.

I'm really fed up with these fun SCI side effects. Who decided quadriplegia wasn't enough to saddle people with?