The state of my health

I’ll be lying awake in pain from osteoarthritis, syringomyelia, chondromalacia, a Baker’s Cyst, and an aching back, but I’ll be high at the same time because I will have taken a few Percocets or a couple of Demerols. Anyway, I’ll be lying there unable to sleep—partly because of the pain, and partly because being high makes my mind bounce all over the place—and I’ll think to myself: “Snow, you really could put yourself to sleep, you know. All you would have to do would be to take a maximum dose of one narcotic or another and a maximum dose of one sleeping pill or another plus three Neurontins, two Tofranils, and one Requip, and wash it all down with a shot of vodka… Okay, forget the vodka, at least until I build up such a tolerance to the pills that they stop working.” Well, it’s tempting sometimes because I’ve been lying awake most nights for years. Of course, the downside would be that I might die, or the house might burn down around me without me waking up until the roof fell on my chest.

I take a fair amount of scary drugs, and sometimes I enjoy them, but I never take more than I need, and rarely as much as I need. I sometimes wonder which would actually be worse for my body, taking enough pills to make me sleep, or the exhaustion I experience from never getting enough sleep. I just know that I take more pills than I ever imagined I would, and, as a consequence of the pills and the pain, I never feel really good anymore, and I never feel really intelligent anymore either. In fact, I worry about how much more I can handle before my organs start to fail.

I got another referral to a neurologist (the same neurologist who did my vertebral biopsy when my C5 turned up osteonecrotic—aka dead), but she won’t see me until I get another MRI, but I can’t get another MRI until insurance okays it, but insurance can’t okay it until my orthopedist submits the proper form. Insurance denied the Synvisc injections, so I have that on appeal, only I have no idea how speedily the orthopedist’s staff is moving on it. I just know that medical staff people tend to thwart a patient at every turn if he becomes impatient. I think this is because overpaid doctors, who are mostly male, treat underpaid staff people, who are mostly female, disrespectfully, so staff people take it out on the only people who are lower on the totem pole than they are, the patients—especially the male patients, although I am not too sure about this part of my theory. But anyway…

The steroid shot I got earlier this month has already stopped working, so I’m positively screwed, pain-wise, until I either get the Synvisc, or the surgical neurologist cuts me open again, or the orthopedist cuts me open again. I’ve been waiting for one thing or another to happen for years, and the glacial slowness of the process really makes me envy people who are so rich that they can get on their Lear Jets, fly to the top specialists, and plop a hundred thousand dollars on the counter and not miss it. They can no doubt get themselves moved to the head of every line too, but I wouldn’t do that, and I wouldn’t mind even a little bit shooting any rich person who did. Of course, that's a politically incorrect thing to say just as saying that I sometimes enjoy being high on narcotics is a politically incorrect thing to say. But, you know, my fondest dream is that I would never need another pill for as long as I live. As for shooting rich people, I think we could do with a few less of those bloodsuckers.

24 comments:

studio lolo said...

It would be wonderful if there was one giant pill to make your whole mess go away, and I'm not talking about an -end-it-all-right-now pill either.

I can't begin to imagine what it's like to live with chronic pain day after day. I'll have to look up some of those ailments you've listed even though I'll never understand your true pain.

It must be hard for Peggy, too. I'm sure you don't need to be told that~you live it.

Hopefully Brewsky will cure some of what ails you. Maybe he'll take away your urge to shoot rich people ;)

It's nice to see you've been hopping around my blogs. I miss my Molkeskine. I hope it's in one of my unpacked boxes. But now I've at least fixed the comments so I can be notified at the correct email address.

I hope you can at least get through the holidays with little pain and more than a smidge of joy!

KC said...

I'm sorry for the pain you are in. I know first hand that not sleeping makes life difficult. I don't know a thing about all the drugs and hope not to learn. I hope your "fondest wish" comes true. My "fondest wish" is to become one of the rich people and helping so many people that I know could use it. I'll put you on my list when my wish comes true.

A Brit in Tennessee said...

I've been having a go round just to get an MRI done on my knee, and we have two insurances !
Pffff.
I hope in the coming New Year, you will have that miracle you so desperately need to overcome all of your ailments and pains, I wish this for you each time I read your struggle.
Celebrate your Christmas by whatever means is best, I wish you and yours a peaceful one....
Jo

CreekHiker / HollysFolly said...

Oh Snow! So sorry!

Skepticat said...

I'd miss you a great deal if you left us but I sure understand the frustration of no sleep and crazy thoughts.

Hope you both have happy holidays!

yoborobo said...

Snow - I am so sorry to hear that you are in so much pain. I know that if you don't get enough sleep, then everything is skewed, so I would hope that you could take enough pain meds to get the rest that your body needs. Pain sucks. I wish I had a magic potion I could send your way. I hope you get some answers soon.

Marion said...

Damn, Snow, but I hate that you're in so much pain still. Sending you good vibes to feel better soon. I often think the freaking medicine I take for my back pain will kill me faster than anything else. (WHY can they not come up with a medication that's NOT filled with acetaminophen? That shit will destroy our livers if we keep taking it! What the HELL IS UP WITH THAT?) Pain management in this country SUCKS. I have to take a piss test with every doctor visit due to the drug addicts in this country. People who are in real chronic pain are fucked and treated like criminals and usually, under medicated.

I feel your pain, trust me, on the insurance thing. I'm on SS Disability with Medicare which I pay out the ass for out of my pathetically small check (I worked for 40 years for THIS?) It's a joke. They TELL me which drugs they don't pay for, which are many I have to take. I changed plans this month and hope to do better in that area in 2011. I spent all my life working in accounting or the legal profession, so I'm not stupid, by far...but that freaking Medicare site is a total mind-fuck. I wanted to shoot my computer after spending about 30 minutes trying to understand just the drug plans. I wonder how people much less intelligent than me can understand it!! And people want the government in charge of healthcare? They can't even run Medicare/Medicaid!!! (Soapbox issue for later....)

Money can't buy me love, but it sure can buy healthcare...you're so right about that. Perhaps you and I should start buying Lotto tickets??? LOL! Love to you and Peggy, Snow. Have a Merry Christmas, my friend. Blessings!!!! xoxoxo

The Bipolar Diva said...

No, no, no taking too many! I just found you and I'm not about to lose you!

Snowbrush said...

Marion, narcotics don't have to come with acetaminophen. I asked a druggist why the hell they would take something as kick-ass as an opiate and mix some weak but liver killing crap like acetaminophen with it. I had imagined that the acetaminophen might make the narcotic work better, but he said this wasn't the case, and that he really didn't have an answer unless it was once thought that the presence of the acetaminophen might discourage abusing the narcotic. Anyway, ask your doctor for straight-up oxycodone or hydrocodone. There's also Demerol, Dilaudid, and Tramadol. But, if I were you, I would get Neurontion because I've found that it works far better than narcotics and comes with fewer side effects. That said, I still trade out drugs so as to avoid building up a tolerance, but if I were forced to choose just one, it would be Neurontin. It also has the advantage of not being a drug that, to my knowledge, is abused, so this might make it easier to get.

Just the fact that doctors continue to prescribe narcotics mixed with acetaminophen should be enough to alert the patient to the fact that she had damned well better stay on top of her own treatment because she simply can't trust her doctor to do so.

nollyposh said...

So sorry that the medical system you are in is so damned selfish!!! We have a lot less of that here Thank-goodness x

All Consuming said...

You do better intelligence-wise drugged off your tits than most people I've ever met who are straight times ten.
I'm with you on the amount of pills and the sleeping (the idiot GP finally agreed to give me Tramadol on repeat) and I so wish you didn't need them.
If I win the lottery any day mark my words you shall be top of my list for medical treatment, in the meanwhilst I shall just be here, painting and being a smart-arse for you when needed. xxx

Snowbrush said...

Lolo, if you do get around to looking all those ailments up, I'll just say that the worst two are osteoarthritis and syringomyelia. The first causes more pain than you might imagine given that old people, especially, complain it so much that it's easy to dismiss how bad it can get by laying it off to the bitchiness of senectitude. Syringomyelia (sometimes called syrinx) comes with many symptoms. The most notable in my case is sunburn like pain in my shinbones--or, at least, it feels like it's in my shinbones.

Brit said: "I've been having a go round just to get an MRI done on my knee..."

My insurance is pretty good. In fact, the Synvisc is one of the rare things that they've balked at. I think the reason might be that it is well accepted for knee problems but has come into use more recently for shoulder problems.

KC said: "I don't know a thing about all the drugs"

I was pretty ignorant about them too five years ago. It's amazing how fast problems can develop and how quickly one thing can lead to another.

All Consuming said: "If I win the lottery any day mark my words you shall be top of my list for medical treatment..."

Why thank you, Dear. You know, of course, that promises made on a blog are legally binding. Oh god, you're not the only smart-ass, now are you?

All Consuming said: "...the idiot GP finally agreed to give me Tramadol..."

I have 89 Tramadol left after taking a total of one. It knocked me on my butt for DAYS, so I'm a little scared of that stuff. I keep thinking I should give it another try with a half dose, and possibly go up from that to 3/4 dose and so on. I'm literally taking drugs that expired 20 months ago because I'm reluctant to take more than I have to, and because I hate to ask for more. Of course, if they were really all that good, I would ask for more. I'm not too concerned about taking expired drugs though because I think those expiration dates tend way toward the conservative side.

ellen abbott said...

This is a whole can or worms. Medical care in this country is a joke. Doctors won't accept patients without insurance. Insurance denies care. You pay through the nose for nothing if you have insurance and if you don't have insurance but are willing to pay for the tests you can't get a doctor to order them. End result is no one gets care except for, as you point out, the very rich. So what does our great hope of a president do for health care reform? Institutes mandatory insurance. so now we will all be impoverished and still not get any care. When did people start becoming doctors to get rich instead of becoming doctors because they wanted to practice medicine?

Sorry you are a poster child for the mess of a system we have here in this country.

dana said...

I had a sadistic surgeon who wouldn't allow me one milligram of xanax during a horrendously painful procedure because "I don't want you to get addicted." The nurse even got involved, begging him to help me.

If a person wants to be addicted, there are more places than the doctor's office to obtain drugs.

We were 100% iced in, home-bound for 8 days and I was in such severe pain that I finally agreed to take the drugs in my cabinet to ease the pain. People who are IN pain, are less likely to become addicted, we don't enjoy the "high". And we get little relief from pain.

I've never understood why a healthy person would WANT the feeling that drugs produce.

I don't call feeling cross-eyed, stupid and like I'm in a Twilight Zone rerun, "high".

The only peace I had during the pain was with an extra shot of alcohol added to the oxycodone - and I HATE alcoholic drinks.

Now we're getting 5 inches of snow and this is what I've learned:

On my own, I'm no more effective than medical help is, but I stand less chance of being killed.

rhymeswithplague said...

Senectitude, forsooth! Today, Christmas Day 2010, I learned a new word.

Just_because_today said...

I sooo dislike to take pills!!! usually I put up with the pain but as you experience, there is a level of pain that is unbearable.

I like your theory on medical staff. I believe that about the insurance people who make the decisions to deny referrals for medical necessary procedures

Diana said...

I'm sorry about all of your pain Snow. My shots have all worn off too. The Synvisc works well for me, better than cortisone but lasts me about six months. And everyone is different on this. I am hoping to get them again soon after I pay down a small Balance that I owe. In the meantime, I guess we'll just hobble along in pain!!
Love Di ♥

Reuben said...

Recently I came down with Norovirus and after two days in bed my lower back ached continuously regardless of my body position. In my great discomfort I thought, "This is what Snow suffers constantly, except more severely and less localized, as do hordes of others. How in the hell do he and they keep on?" Getting old, I am told, is not for wimps, and when I am ill I believe it. People should be receiving medals on their birthdays - solid gold ones that they can barter away for better health care. And maybe a mansion with Jesus if they make it to one hundred.

Snowbrush said...

Reuben said: "How in the hell do he and they keep on?"

Reuben, it's late and I'm pretty tired, so I'll just throw out some sundry thoughts.

I would hardly presume to speak for others since I've no doubt that many people suffer to an extent that would at the very least make me want to kill myself.

As for my own pain, it has gotten easier to bear for several reasons. One is that it has become the status quo for me, so I no longer rage against it the way I did when it was new. That which is known is almost always easier to bear.

I used to worry that it would become so bad that I couldn't take it anymore, and this thought was terrifying especially in the wee hours when I simply couldn't sleep for more than an hour at a time before the pain woke me up again. I initially thought that narcotics would at least make the worst of it go away, and when I discovered that none of the many I tried came anywhere near to doing this, I felt a great despair.

I also suspect that I've grown stronger, or, if not stronger, at least more experienced at staying more or less upbeat. Practice might not make perfect, but it sure helps.

Finally, my problems are nowhere near as bad as they could be. For example, I could be in this much pain--or even more pain--and still HAVE to perform hard physical labor to support my family. Or, I might not be able to afford medical care. If either was the case, I might have already withered away and died from discouragement and exhaustion. I often think about people with similar conditions who lived even since I was born, and I wonder how the hell they kept going.

Another way things could be worse would be if I had a far more severe problem, both in terms of pain and hopelessness. If I really knew that everyday would see me a little worse off until I either went insane or killed myself (which are common outcomes of Complex Regional Pain Disorder, to name one such condition), I don't know how I could bear it, yet I know someone who is going through just that.

I also have reason to hope that I will get better. This will require from one to a few additional surgeries, but I'm not out of options.

Finally, I have other things in my life--most notably a good marriage--that help me to think of my life as worthwhile despite my problems.

Mad Mind said...

I wish I could take it all away.

His kajirah said...

Hi my friend

Glad for the update on your health and pain. As always I'm more than a bit behind.

I've been co hosting the Living with HOPE (previously Living with RSD) radio show on BTR. The Host merged with 2 other Hosts and the Body, Mind and Spirit network was born. We do the "body" and our show is on living with illnesses, chronic pain. We're on the air Monday 5 p.m PST and Friday 9 a.m PST.

http://www.blogtalkradio.com/thebodymindandspiritnetwork

I hope posting the link is acceptable. My ID there is rsdcrpsfire which I generally go by in the pain community.

One of your readers mentioned a single pill, one giant one, I too with this was true for both of us. (okay and others, too) ~smiles

Next month I'm starting a clinical study for low laser therapy. He wants to see me everyday for a month at 20-30 minutes per session, but because of hard times, I can only commit to every other day. I'm not sure if I want to be tortured every day anyhow since more pain can be caused until it has a chance to work.

Even so I've put myself up to be studied on and signed a release.

After completed we'll do a radio show on my experience.

Since not all treatments are available in all places it gives others a chance to make a better informed decision before choosing to travel which is often at our own expense.

A new therapy only available in New York is IV Ozone therapy. Current reports seem promising. We'll have Dr. Robbins who performs on the show on the 31st, a patient of his was on 3 episodes ago. Another treatment the Ketamine drip also isn't available everywhere.

I think I've babbled on enough for now, you are always in my thoughts and prayers. I wish I was in touch more often. Working on developing a better schedule. What throws me off are the days the pain halts me into a crash and burn. I lose days at a time. Nearly every other day at times.

Wishing you and Peggy the very best

Your friend,
~Twinkle V.

His kajirah said...

Hi my friend

Glad for the update on your health and pain. As always I'm more than a bit behind.

I've been co hosting the Living with HOPE (previously Living with RSD) radio show on BTR. The Host merged with 2 other Hosts and the Body, Mind and Spirit network was born. We do the "body" and our show is on living with illnesses, chronic pain. We're on the air Monday 5 p.m PST and Friday 9 a.m PST.

http://www.blogtalkradio.com/thematrix777

I hope posting the link is acceptable. My ID there is rsdcrpsfire which I generally go by in the pain community.

One of your readers mentioned a single pill, one giant one, I too with this was true for both of us. (okay and others, too) ~smiles

Next month I'm starting a clinical study for low laser therapy. He wants to see me everyday for a month at 20-30 minutes per session, but because of hard times, I can only commit to every other day. I'm not sure if I want to be tortured every day anyhow since more pain can be caused until it has a chance to work.

Even so I've put myself up to be studied on and signed a release.

After completed we'll do a radio show on my experience.

Since not all treatments are available in all places it gives others a chance to make a better informed decision before choosing to travel which is often at our own expense.

A new therapy only available in New York is IV Ozone therapy. Current reports seem promising. We'll have Dr. Robbins who performs on the show on the 31st, a patient of his was on 3 episodes ago. Another treatment the Ketamine drip also isn't available everywhere.

I think I've babbled on enough for now, you are always in my thoughts and prayers. I wish I was in touch more often. Working on developing a better schedule. What throws me off are the days the pain halts me into a crash and burn. I lose days at a time. Nearly every other day at times.

Wishing you and Peggy the very best

Your friend,
~Twinkle V.

p.s my comp froze and I'm not sure if this is posting twice, I also had to change the link I shared to a shorter one.

His kajirah said...

Hi my friend

Glad for the update on your health and pain. As always I'm more than a bit behind.

I've been co hosting the Living with HOPE (previously Living with RSD) radio show on BTR. The Host merged with 2 other Hosts and the Body, Mind and Spirit network was born. We do the "body" and our show is on living with illnesses, chronic pain. We're on the air Monday 5 p.m PST and Friday 9 a.m PST.

blogtalkradio.com/thematrix777

I hope posting the link is acceptable. My ID there is rsdcrpsfire which I generally go by in the pain community.

One of your readers mentioned a single pill, one giant one, I too with this was true for both of us. (okay and others, too) ~smiles

Next month I'm starting a clinical study for low laser therapy. He wants to see me everyday for a month at 20-30 minutes per session, but because of hard times, I can only commit to every other day. I'm not sure if I want to be tortured every day anyhow since more pain can be caused until it has a chance to work.

Even so I've put myself up to be studied on and signed a release.

After completed we'll do a radio show on my experience.

Since not all treatments are available in all places it gives others a chance to make a better informed decision before choosing to travel which is often at our own expense.

A new therapy only available in New York is IV Ozone therapy. Current reports seem promising. We'll have Dr. Robbins who performs on the show on the 31st, a patient of his was on 3 episodes ago. Another treatment the Ketamine drip also isn't available everywhere.

I think I've babbled on enough for now, you are always in my thoughts and prayers. I wish I was in touch more often. Working on developing a better schedule. What throws me off are the days the pain halts me into a crash and burn. I lose days at a time. Nearly every other day at times.

Wishing you and Peggy the very best

Your friend,
~Twinkle V.

His kajirah said...

Hi my friend

Glad for the update on your health and pain. As always I'm more than a bit behind.

I've been co hosting the Living with HOPE (previously Living with RSD) radio show on BTR. The Host merged with 2 other Hosts and the Body, Mind and Spirit network was born. We do the "body" and our show is on living with illnesses, chronic pain. We're on the air Monday 5 p.m PST and Friday 9 a.m PST.

If anyone would like the link just ask. I tried to post it but it wouldn't let me. My ID at blogtalkradio.com is rsdcrpsfire which I often use in the medical community.

One of your readers mentioned a single pill, one giant one, I too with this was true for both of us. (okay and others, too) ~smiles

Next month I'm starting a clinical study for low laser therapy. He wants to see me everyday for a month at 20-30 minutes per session, but because of hard times, I can only commit to every other day. I'm not sure if I want to be tortured every day anyhow since more pain can be caused until it has a chance to work.

Even so I've put myself up to be studied on and signed a release.

After completed we'll do a radio show on my experience.

Since not all treatments are available in all places it gives others a chance to make a better informed decision before choosing to travel which is often at our own expense.

A new therapy only available in New York is IV Ozone therapy. Current reports seem promising. We'll have Dr. Robbins who performs on the show on the 31st, a patient of his was on 3 episodes ago. Another treatment the Ketamine drip also isn't available everywhere.

I think I've babbled on enough for now, you are always in my thoughts and prayers. I wish I was in touch more often. Working on developing a better schedule. What throws me off are the days the pain halts me into a crash and burn. I lose days at a time. Nearly every other day at times.

Wishing you and Peggy the very best

Your friend,
~Twinkle V.