Put A Bandaid On It

I'm watching what exactly they treat a friend's injury with and for, and comparing that sitch with my own and 2 other people's disability processes. Four of us have motor functioning issues as well as pain and site-specific joint and spinal problems.

He is the second medical field worker I've watched, too. I assumed that medical folks would be treated better than laymen by their own, and to an extent that's true. They are, in my experience, given total pain relief from the beginning. He was given the same drugs, in the same order as I was. But he was given narcotics right from the beginning, where I didn't receive them for years. And he was given higher doses from the beginning. He can call his narcotic script in, where I have to have someone pick it up and fill it.

However, that seems to be the end of special treatment. As in my case, where only surgeries will change anything (and they won't do it til I'm 60), they are saying the same treatment course I took should be his course. Namely, steroid shots, antiinflams and narcotics and then surgery. (Though they'll operate on him when he wants it, as they did the other med pro).

In short 4 of us are being treated for effects and never going near the cause. In my case, they know the problem but won't fix it. In other cases they don't really know what the problem is but want to go in and look. The other disabled folk I'm referring to have had surgeries but haven't been relieved of either condition nor pain. They are on a combo of drugs and have started to have complications from the drug use. But none of us are quantitatively better at all.

We have all undergone steroid shots, which are painful and do nothing, and actually can cause more damage. A nurse finally intervened in my then-Ortho surgeon's office, telling me I shouldn't have had so many cortisone shots as I'd had already. In research, the protocol says 4-6 and no more, as cortisone breaks down cartilege. I had either 8 or 9. Since I'd started with little cartilege to begin with, the cortisone removed what little I had left. Then I had lydocaine shot into the hip joint and the pain was numb for roughly 18 hours. While that was a pleasant change and it was nice to walk up a flight of stairs like a person, was it worth it? The procedure required a surgery room; though I only was given a local an anaesthetist was in on it. The doctor had a hard time getting the flexible, 6" needle around a hook that had formed on the edge of my femur. I watched the whole thing on a screen, with him. He was very nice, and apologized when he saw me crying from the pain. It took 3 times longer than he'd planned and I was numb in the leg from all the local shots the anaesthetist kept shooting me with to finish the deal. The next morning it was as if I hadn't had a shot at all, except for the huge bruises on my hip. All the pain plus some new from the needles and the interior efforts at getting into the joint.

The sum of our combined medical bills must exceed a million dollars. One of the group has had 14 surgeries around one nerve. His last neck surgery was a success only in that it didn't make him worse and he wasn't paralyzed, which was the risk. I've had more CT Scans, MRIs and x-rays than a person should have. Doctors have halted procedures in flagrante because other docs sent me back to radiology too soon. That's not a commonality to the others. However, each of us has been thru so many tests that availed doctors nothing that I have to wonder if the tests were necessary at all. It does seem to be the system they employ blanketly. But does it do anything else besides keep radiology busy and billing?

Ever have electrically charged needles pushed into your nerves to raise a noise on a machine? That's an EMG, an ElectroMiloGram. If you didn't have neuropathy before it, you will afterward, and for years. It's a pain you'll never forget, it will make you cry, it will change your outlook on life. It's what they use to measure nerve damage. There's no pain relief, barely a human element at all, as neurologists really aren't the warm type. But if you're being evaluated for any injury or unknown cause of pain, you'll probably be told to have one. Don't do it. You have the right to refuse. I consider it as barbaric as trepanning. Or waterboarding.

So is this just another rant without purpose? Well, yes and no. There's the point that though med pros may get a bit better care, they get the same carnival of souls treatment as the rest of us down the line. So where's the real dividing line in treatment? It's pretty apparent to me that it's economical.

For instance, I can cite 2 people who've needed hip replacements. 1 is an old acquaintance who's an importer with fabulous private insurance. The other is a local on Disability.

The importer had both hips replaced within 2 years and never lost a day to being disabled, as they replaced his hips at the first signs of degeneration. The first hip healed within 2 months after surgery and he was back traveling; on a cane for a while, but getting around nonetheless.. The second hip healed a little more slowly but he still lost only a couple additional weeks to PE before he was taking off to Europe on a buying trip. He has full use of his legs and you'd never know he has total hip replacements.

The local lived for 6 years in pain, becoming more and more unable to walk. They gave her a cane, then a walker. They wouldn't give her a motorized chair. Eventually she became housebound, then bedridden. She became morbidly obese. Her mental and emotional states were horrible. People took advantage of her incapacity. To her, it was a choice of being ripped off or being alone. Finally, someone advocated for her and she got her hip replaced. However, they'd waited so long that her leg was 2 inches shorter than the other, too much of a difference to adjust the parts to compensate. So she has a limp and a lift. She also got minimal PE, and now, 2 years after the THR, she is still on a cane or walker and some days she can't walk until she's pumped on narcotics. She won't be going back to work. And she's nearly ten years younger than the importer. And me.

Yes, medical care is given, but it's certainly based on how much money you have. Hers is the most glaring example, but I know of many, many others. Right down to a retired policeman on Medicare, denied a prescribed third hormone shot due to the expense. Or the AIDS patient on Medicare, a flaming queen, who was told he was just panicking when he'd had a stroke. The overweight new mother on Medicaid, told she should go home and take some antacid and not eat so much, when her gallbladder was about to burst. I'm certain that poor patients are treated as second class citizens. I see and experience it all the time.

So how to adjust this? I'm not sure even SPH would fix this. The insurance companies won't go out of business, so private insurance will continue, and doctors will always go for the full dollar over the 86% or whichever Medicare/aid pays now. Perhaps it would make a difference if unions and large companies dropped BC/BS, GHI, etc. and joined the rest of the public in a national health system. With that large a consumer pool, they'd be hard pressed to give poor care to those who have an option and aren't poor. In fact, the doctors' office staffs could no longer say "Medicaid, right?" with a sneer. They wouldn't necessarily know the poor from the middle class.

All of this is not to say that you're treated like filth to your face. Most of the time there remains the stonefaced politeness everyone gets. Nurses most often are the most alert and concerned for patients' wellbeing. Personally, I've had nurses that were angels and nurses that should've worked at Gitmo. It's further up the chain that the prejudice really shows- in the nontreatment, in decisions left to the system rather than the patient. And while it continues, patients are more beaten down, nurses become sick and tired of the stress, good docs do what they can and shake their heads.

It was recently disclosed that several local doctors are being investigated because of all the money pharma companies have been paying them. The docs and drugs in question are all psych specialties.

I once lived with a young doctor. He and his friends all became docs for the money and prestige, and no bones about telling you that with a dismissive laugh. I'll spare you their horrifying other stories, all told with laughter.

Sorry, no answers, no happy ending. I just know that nobody talks about these things and I'm determined these facts get out there. It really is true that there are things you can't understand, things you may deny, until it happens to you or yours. But they are happening. It's just that nobody tells you. Why don't people talk? Fear. Especially in small towns, if a doc has a problem with you, your name will be Mudd. It's medical blackballing, and I know 2 people who've been denied treatment by new docs because of what the old doc said. It's corrupt, it's lousy and it's true.

So if you're monied, congrats and expect good med experiences. If you're poor, lower your expectations. And your life expectancy.

Ego Fugis Ab Mea Gluteus Maximus

Fall came and went, winter started early and stayed, and I forgot to blog.

A surprise email brought me back here and while here, I thought may as well update.

Tommy is still healing, veeery slowly. He took a fall on the ice and rebroke a couple things, but he's hanging in there. He was sad he couldn't sing for Christmas services, but he's looking forward to Easter. He said this was the second best holiday he remembers, so that's cool. He's down to 160 lbs, as skinny as he was in HS. Ruth worried herself down to a size 8. Bet I wouldn't even recognize them. Scott spends most of his time out of the house, natch. He's 20 and in college. So all's pretty well in PA.

Billy has decided no more surgeries and who can blame him? He's drugged to the gills but goes to work every day. I worry about him driving in NJ that way. Mac stopped PE on her new hip too early and is still gimping around on it. It didn't change her back problems anyway. They're getting new windows on the house.

My grandniece Colleen beat us all by getting her book on a library shelf first. Her volume on the local cemetery will stay a research resource forever. All else is much the same with those out west, aside from things too personal for a blog.

We have a new president, and it's Obama. At some point I'll blog about that alone. I'm still blown away that it actually happened.

The holidays of double-aught 8 will be remembered as almost perfect, and so analogous to the holidays of 1969 that it makes me smile. Except I didn't miss singing "O Holy Night" in the Junior Choir solo this time. But I came down just as sick and slept all wrapped up on Kathleen's couch with the fireplace going. Christmas morning was like being kids again, tearing into presents and Harley getting in the mess.

Neglected Thanksgiving! A great day, with people coming and going and watching seasonal movies and then music. It was great to have Stevil back in form. The Cromptons were fun, Chris and Lise and Nancy and Ten.. good friends, lots of laughter.

And now it's 2009. I survived 2008, an annus horribilus, and made it to the other side. Disability came thru the first time (Thanks again, Bernie and Gretchen). No retro for the last 2 years, but who cares. I'm at least living on the poverty line now. The bills are paid, there's food in the house and I have some to share. Can't complain. There are still plenty of things to deal with (does that ever end?) but ya do what you can and let the rest go. The world's a strange and wondrous place. Just when you think you're sure of something, something will happen that makes you change what you know. I just try to fly by my ass.

And Another Thing

One thing I know I'm pretty good at is giving support. I do my best to help people who need a hand, or a shove, to get through or get things done. I'll listen and commiserate, give suggestions where needed, just be a sounding board, ask beyond the particular problem how the person's doing, yada yada.

But it seems that when you're one who supports, nobody thinks you need any.

This is a repetitive theme in my life. I often get other people's messes to clean up, or somebody dies and it all ends up in my lap. Everyone comes to me when they're hurting over something, when they're losing, when they can't cope. And I never turn my back. I can't. It makes me happy to help somebody. But it seems I don't get much back-up in life from those I need to give it.

This is all really about my brothers. I have two left. Both older (60 and 58). The 60 year old just had open heart and is recuperating very slowly, at home now. He has COPD and diabetes, so healing is a long process. The 58 yr old just got the news that his docs think he has a blood cancer. Not lymphoma, but leukemia or multiple myeloma. We won't know for sure until the marrow biopsy on the 22nd. But he's pretty convinced it's myeloma, and after looking at the symptoms, I have to say they're all there. Myeloma is a short-term death sentence.

We three are all that's left of "our family". There are cousins but we're not close, there are nephews and nieces and grands. But Billy and Tommy and I are the only ones who have the memories now. And the non-immediate family doesn't seem to care.

At 50, I'm the on the front line in my family, and will probably be the last to go. I really, really, don't like that prospect. I already have too many memories that nobody else living shares. Before my "little brother", Seth, died, we'd counted up the deaths we'd been through. It was 54, then. My count now is 58. I've had enough.

But beyond that, I wish those who can take support would give it.

Late Night with gnana

"i dont know what jingoistic and xenophobic mean (am looking up) i am just common folk. i just think our country has gone back to king and queen crap. taxation without representation. rich gettin richer off backs of serfs. we have no say in what happens in washington nor where and when we go to war. i am not an old lady headed to the hills with her guns and compound, but sure dont feel anyone listens. i am almost happy i willnot live to see the downfall of our county. because younger people do not know what it was like to be so proud to be an america. so they will accept the status quo. i still am proud i am american."
-gnana, iBrattleboro.com

This comment has been haunting me. In the last years, I've remarked that I was glad the old people didn't have to see what's happened. And lately I've begun a serious exit strategy for the possibility should McSame get to be President.

This blog often catches my attention when something that's serious and negative makes some new move in my life. This is sometimes just my rant page. But more often than not, it's not a place you're gonna read something that'll send you on your way whistling "Zippadee doo dah". Over the last 10 years I've watched a lot of bad happen in my country. I'm accustomed, tuned, to look for the lies, the evil actions. Sometimes I get a fact wrong. Sometimes my opinion bleeds into what I'm reporting as a citizen journalist (my greatest achievement? #1 most-read article on iBrattleboro.com, "Naked PETA Girls Attract Crowd in Brattleboro"). I try to stay away from emoting when reporting things. But here, I get to vomit.

To hear such disheartenment from one of my town's most lovely elders makes me puke. To see and know how evil and awful these leaders are makes me puke. I don't know how this will end, or if it will. And I have hopes on a guy who may or may not be the new leader we need. In paranoid moments I half-envision a Totalitarian Amerika, one in which I won't live under any circumstances. I wonder how much of my family will be Good Amerikans and be all right. My brothers are vets and getting up there so they're probably okay. It's the young ones- the 4 nephews and their families- that worry me most. Especially those that are already on the Right wing side. Will they be wearing a uniform under some new Fascist Regime, a new Fuhrer to horrify the world from my own country? And what if I do expatriate in another place, will I be interned there? Will the world hate the US the way it hated Nazi Germany?

Yet, the most bizarre set up has happened that may change my life anyway. It's possible that I may be able to emigrate with an amount of comfort- and birthright I wasn't aware of until 3 years ago. We live in very interesting times. I'm staying afloat thru it, and gods know my lot in life may change rapidly for the better, but part of me is with gnana. This is like watching the death of my country before my eyes. I'm looking at a younger-than-me black doctor to save the patient.

Accepting Things You Can't Change

Ever since my mother hung a tacky aluminum plate with fake "American Indian" symbols and the Serenity Prayer on it, I've followed that advice. It makes life easier. I'm good with easier. There are enough complications, like the tax system. And life in general. Love in particular.

So I try to keep things in perspective, not let the small stuff bug me, take pleasure in little things, all that advice older people give. But somewhere, somehow, something enters my life that brings panic and agita. In this case, being flat broke, applying for Disability, my friend's back problems, my brother's open heart surgery, some members of my family's lack of feelings (unless it's Their Crisis) and continuing interpersonal issues amongst my friends. All going on at once.

For instance- my brother's surgery. I'm not asking anyone to fly out here and hold my sis-in-law's hand . But will one of them respond, even with a "Hope he's okay"? I don''t even get answers to the emails! Fine. It's not the first time. Let it go. But I won't forget this one. Thank the God/desses, he's coming along fine.

Then there's the running lack of gratitude from friends for whom others have done huge favors. Me also, in that group. Some people seem to think they're entitled, and that whatever someone does for them, it's just their right to say how, when, where and what that favor should be. And then to judge the quality of that favor, and even to criticize it. In this case, it's easier for me to forget the bit of anger over what they've done to me. But someone just did them a Real Solid, and they criticized him. It wasn't what they wanted, exactly. No thanks, just disappointment. What a complete lack of manners. That's a hard one for me to accept, but there's no changing their behavior; it's a pattern I've seen. I can, however, ignore their wants in the future, and I will.

The Grand Guignol at the moment is my financial picture. I have roughly 10 bucks to my name. This came about over a mistake that an Aide made, which took the bucks I had earmarked for the phone bill and some incidentals away, when she spent my cash on food that could've waited the 3 days until my Food Stamp allotment came. My oldest and dearest friend is stepping in once again, with a loan to help me stay afloat til something gives. But it's been a week and I've not heard from her. On the 5th, I'm officially 3 months behind in rent, which coincides with the signing of a new lease offer. I'm really afraid that my landlord won't re-up my lease, and that'll be another battle that I just don't think I can wage right now. I'm pretty beaten down. On the sunny side, Social Security has finally given me an evaluation appointment with a doctor. That's on the 10th. I'm praying I don't get the "first application is always denied" treatment. My US Senator has stepped in unbidden (I love you, Bernie and Gretchen) so maybe that will help my case. But I gotta tell you, all this has me dissociating and not able to sleep all that well. I'm doing all the pro-active things I dream up. I'll just have to accept that there's a limit to what I can do. And accept that there are things about my condition that can't be changed. And accept that my Nana's old saying is true; "What can't be cured must be endured".

And so, patient reader, be kinder to yourself, because some bitch or bastard is ready at any moment to be rotten to you. Be able to take joy in the smallest things, because sometimes that's all you have. Be grateful for what you have and all you're given, because life doesn't owe you a thing. Be wise in whom you trust and keep close, and when you find even one who'll fit the bill, cherish them.