Update

I am now living a life in which I am desperate for sleep. I don’t know why I’m in such pain, but since I felt similarly after my previous surgeries, only to eventually reach the point where I could sleep for up to four hours at a time, I can but hope that this time will be that way also. After all, I only had my third surgery nine weeks ago today.

Before my final awakening this morning, I dreamed that I flew bodily to the home of my friends—long since dead—Jim and Doris Bateman. I was so happy to have surrogate grandparents whom I could drop in on at any time that I cried, partly out of gratitude and partly because I couldn’t allow myself to believe that I was really welcome. When I awoke, I was desperate (it seems that I’m desperate about everything anymore) to have such people in my life again. I then realized that I do, really. I have Bella, and I also have a couple of elderly neighors who would love to have me visit. It’s not the same though now that I’m 62. Sadly, the time for grandparents is past.

I’m taking fewer narcotics because they don’t work well enough (outside of elevating my mood) to risk liver damage. Double doses of sleeping pills still deaden the pain enough for me to at least rest a little, although I worry far more about becoming dependent upon them than I ever worried about Demerol or Dilaudid. I’m still pursuing marijuana, and, because of my desperation, I have placed what is surely an inordinate amount of hope in it. Meanwhile, Obama just reversed his promise to not bust medical marijuana users, doctors, growers, and everyone else affiliated with the drug. Because Peggy is a nurse, I worry that she might lose her license simply by being married to me—sort of a collateral damage scenario. The waste, bigotry, and short-sightedness that is America leaves me aghast. I violate my conscience everytime I pay taxes. I mustn’t dwell on that though…. I see that the mailman just delivered my seventh medical bill of the week.

When I go to a doctor, I take along a summary of my problems so that I can express myself succinctly and not forget anything. The rest of this post consists of my summary from last week.

Treatments that have been of little or no benefit in relieving my bilateral shoulder pain:

Three shoulder surgeries in two years
Numerous steroid shots
Several courses of physical therapy
Dalmane, Restoril, Ambien, Lunesta, Hydrocodone, Oxycodone, Ultram, Demerol, Dilaudid, Naproxen, Piroxicam, Celebrex, Neurontin, Elavil, Tofranil, DMSO, Ginger, Turmeric, SAM-e, Habanero Peppers, Topical Anesthetics
Ice packs
Massage, Yoga, Acupuncture
Sleeping in a recliner

It is a good night when I am able to sleep two hours in a row before the pain awakens me, at which time I have to take more pills, get a fresh ice pack, or stay up for awhile. The pain makes it necessary for me to sleep entirely on my back, but my middle back hurts so much in that position that it combines with the shoulder pain to keep me awake.

Before the onset of shoulder pain, I enjoyed yardwork and handyman projects; but I have to be very cautious about such things lest the nighttime pain becomes so bad that I am challenged to sleep at all. I also enjoyed camping, but the pain now prevents me from doing that as well. Life as I had lived it for decades ended in 2006.

I’ve spent 4 ½ months out of the past two years in a sling, and 4 ½ additional months during which I couldn’t lift anything heavier than a cup of coffee. Now, I’m facing at least one more surgery. As with other treatments, I will submit to it simply because I am desperate for relief and don’t know what else to do.

Other complaints:

Burning pains in both shins was diagnosed by one doctor as complex regional pain syndrome and by another as syringomyelia. A third doctor disagreed with both diagnoses but didn’t have one of her own.

Raynaud’s Disease in both hands.

Advanced osteoarthritis in my left knee accompanied by a Baker’s Cyst and chondromalacia (a 2006 knee debridement failed to help).

An osteonecrotic C-5 vertebra that was initially thought to contribute to my shoulder pain, although a vertebral biopsy and a series of steroid shots to my neck failed to reduce the pain.

Sleep apnea for which I use a CPAP.

*Photo by O'Dea

29 comments:

Linda said...

Snow, I am so sorry you have to go through all this. 62 is way too young (I'm 63 and so see it that way).
I'm afraid, as I've seen others do, that I would probably become more reliant on the stronger pain killers. I've heard you don't really get addicted so badly if you are genuinely in pain, compared to those who take them for recreation. Have you tried mindfulness training?
Life is at a difficult time for you right now. How hard it must be to get used to. I hope it gets better.

ellen abbott said...

I am humbled by what you face every day.

Snowbrush said...

Linda, dear, I've taken narcotics for years, and figure that if I haven't gotten addicted by now, it's unlikely that I will. A more serious problem that I have with narcotics is that I've gotten to the point that I can take four times the amount I used to take, yet not get as much benefit from it.

As I understand mindfulness meditation, its goal is to ever be in the present, and I can see merit in that since pain is made worse by feelings of outrage combined with the fear that it will never go away.

Snowbrush said...

Oh, Ellen, I was responding to Linda when you wrote. Thank you so much. I keep thinking that there must be some good that I can get from this, but it's darn hard to tell what it is. Maybe it will become apparent in retrospect, that is if I ever get to "retrospect."

Helen said...

You may have answered this in prior posts or comments .... have you tried hypnosis?

Natalie said...

The rage and the fear are a task on their own aren't they? :(

I really hate to see others suffering...especially people I am really fond of.♥

Kay Dennison said...

ARGGGGGH!!!!! I am so very sorry for your pain. Has your doctor recommended any sort of pain management? A lot of advances have been made in that area. You might check out Mayo Clinic or one of the other major hospitals that are nearer to you to see if they have a program that might help. It never hurts to ask. I am keeping good thoughts for you!

CreekHiker / HollysFolly said...

I fear I'm headed down this road myself. My aches and pains keep me awake most nights. I'm so sorry for you Snow. You are far too young to have to deal with this.

The Elephant's Child said...

Oh Snow, I am so, so sorry. Either the pain, OR the rage/frustration, OR the restrictions on your life would be more than enough without lumping them together as a job lot. I know that I can never tell which is going to piss me off more. Sending good wishes your way.

Snowbrush said...

No, Helen, I haven't tried hypnosis, and know nothing about it as a treatment for chronic pain.

Natalie said: "I really hate to see others suffering...especially people I am really fond of.♥"

I'm going to be an optimist for a moment and assume that the heart means that I'm one of those people--thank you, babe.

Kay, I've been to a pain specialist, and he put me on Neurontin, which I still take and regard as about the best thing I have, pill-wise, at least for daily use. I have often visited the Mayo Clinic site among other hospital and orthopedic sites. Do you know of the NIH (National Institute of Health) site? It's surely among the best, if not the best, sources for medical research. Also, one of the local hospitals (Peace Health) in Eugene has a site on which you can write to ask free questions of doctors and also request medical study reference sources. I also got a library card at the University of Oregon, so I can peruse medical textbooks.

CreekHiker said: "My aches and pains keep me awake most nights."

I'm so sorry. It's all a matter of degree, of course. Most people my age are probably awakened a few times a night, at least, by pain, but are able to go back to sleep. I can't very often do that because the longer I've been lying down, the worse the pain has become. Postural pain is a real problem with shoulders, but the advantage to it is that I hurt far less during the daytime, so I do get partial respite.

Elephant's Child said: "Either the pain, OR the rage/frustration, OR the restrictions on your life would be more than enough without lumping them together as a job lot."

Yeah, all that combined with the fact that it's chronic. I would guess that I do better than most people with acute pain, but chronic pain is a whole other animal, and I'm forever feeling that I must be doing something wrong for it to get me down so. Then I think that, well, who wouldn't be bummed if they had to live like this. On the other hand, I know that there are many, many people who are surviving far worse than what I have to deal with, and I take a lot of encouragement from that because I figure that if they can survive, so can I. I keep thinking that (a) the pain will eventually let up, or (b) I'll learn to handle it better.

kylie said...

if there was anything i could do for you snow i would, in a heartbeat.
i am currently calling for anybody who wants aussie candy to message me, so if you are interested in some sugary crap you only have to say so and wait till i get around to posting it.
much love
k

The Elephant's Child said...

If either '(a) the pain will eventually let up, or (b) I'll learn to handle it better' happens let us know. I beat myself up about b often but it hasn't/doesn't help. And I too know that there are other people out there dealing with more and worse, but that doesn't change my situation for the better either. It just adds guilt to the mix.

River said...

With my back pain, I've found that raising the legs and feet by putting a pillow or two under the thighs and two pillows under the calves helps quite a bit. Bending the knees so your thighs are at an almost right angle to your body takes a lot of pressure off the back. I'm not sure how this will affect your shoulders, but maybe it's worth a try for a little extra sleep?

Lydia said...

Bless your heart, for it makes you the special person who would leave a note at my blog about my sick kitty when you are enduring so much. I am crying for both of you, for her because she cannot describe for me what she is feeling right now and for you because you can.

Check out Helen's idea about hypnosis, won't you? It may help...seems worth a try.

R. J. said...

Sorry for your troubles. I'm no help at all--my coping skills aren't very good so I will wish you the best and good luck.

Marion said...

I really, really wish I could help, or at least could direct you somewhere where you could find relief for that pain. I, too, constantly feel there must be something more I could do to handle pain. I beat myself up because I think maybe I'm a wuss, maybe others would be able to deal with it much better.

In the end, it doesn't matter.I'm the one who must find a way, in order to live as well as I can.

I so sincerely hope you will find a way as well, Snow. I will hold you in my heart...xx

Marion said...

I feel your pain and hope you get some kind of relief soon, Snow. Not being able to sleep is pure hell. (I often sleep in my recliner and it's not a restful sleep...ever.) I, too, wish they would just go ahead and legalize medical MJ in all of the USA. Hell, it's a freaking plant, an herb. It cannot be more harmful than all the drugs prescribed for pain...

My own situation has the added drama of my pain doctor telling me at my last visit (I have to take a piss test at every visit for which the doctor charges $300) that not only was I not taking my prescribed medication, (I was taking it exactly as prescribed) but that I was taking another drug instead (a drug that I'm not prescribed and don't even have). I was shocked & furious because neither is true and I denied it vehemently. I demanded another drug test and said I'd pay for it using my grocery money for the entire MONTH and I strongly suggested his staff (all beautiful, very young women) mixed my test up with someone elses.

He just smiled his evil, greedy smile and said, "Oh, don't worry about it. We'll just see you back in one month and retest you." Oh, I get it, it's all a fucking money scam to pay for his vacation in August! (I normally only go once every 3 months.) I am still LIVID about it...to be called a liar by this rich, greedy, lying bastard! And he must think me a total moron to be taking strange drugs KNOWING I'm going to be piss tested. UGH!!! The state of pain management in this country is horrific.

Take care,
Marion

bluzdude said...

So sorry you're going through this. Certainly makes my aches and pains look pedestrian. No more bitching from me...

Helen said...

Thank you so much for the photo compliment ... my granddaughter snapped it. WebMD has info on hypnosis for managing chronic pain .... please check it out.

Lorraina said...

I'm so sorry for all this Snow. Something has to connect somehow.Did you ever ask your Dr. re Botox injections? I guess it's controversial but maybe worth a try as it would paralyze the nerves that send the pain message to the brain temporarily for a few months or weeks.

dana said...

Snow, I've never smoked marijuana but am getting pretty OCD about it. I went so far as to ask a person at a "health food shack" if he knew where I could get some. He said he could do it, then I had too much fear to follow it up. I pictured myself driving home and getting pulled over with just ONE in the car. Then all pain I have would be quadrupled, laying on a cot in jail.

My shoulders feel as if they've been crushed. Literally. I lay in bed feeling as if they have shattered into the middle of my neck, the pain now spreads across my clavicle and the speed that it is progressing is frightening when I look back just a few months ago.

I have no doctor where I'm living now. They won't take my insurance and I'm NO DOUBT better off without them.

It's a definite conundrum that I think I'd have a better chance of helping on my own - but it's too illegal to even contemplate.

Robert the Skeptic said...

Yeah I'm 62 in July. It's the shits getting old.

Strayer said...

I think your neck should be MRI'ed. The shin pain, I had that with a disc ruptured out and hardened across a leg nerve. I think you've got neck trouble, nerves being crushed, pinched or impinged. Or a disc ruptured into your spine? Or double crush syndrome both sides. The shoulder and neck nerves come out between the clavicle and upper rib and get crushed by muscles against those bones, causing pain throughout those upper extremities. I just wish there was an answer, is all. Nerve blocks?

Is it a space issue in both shoulders? Do posture exercises work? I don't think drugs will help. Maybe this is a mechanics issue, of creating space, or finding where the exact source of the nerve pain. I don't know.

Snowbrush said...

Oh, gosh, I'm too far behind on responses to answer them all, but I'll be sure and get to any questions and suggestions.

River said: "I've found that raising the legs and feet by putting a pillow or two under the thighs and two pillows under the calves helps quite a bit."

Thanks, River. I already sleep with a pillow under my knees, and it does help.

Lydia said: "Check out Helen's idea about hypnosis, won't you?"

I will look into it, and if money were no object, I would experiment a lot more than I do alternative treatments. I'm already out hundreds of dollars a month, on average.

Canadian Marion said: "I beat myself up because I think maybe I'm a wuss..."

Well, no one can see pain. If someone has a nail poking out of their foot, you know they're hurting, but you and I look normal as do most people who are in pain.

Louisiana Marion, are you back? I thought you went away mad, and I felt very badly about it. I was so sorry to read about your asshole of a doctor. What kind of a doctor would routinely make his patients take a piss test? Maybe a lot of pain specialists do, and I just don't about know it, having only been to one of them on one occasion. In any event, I wouldn't do well with it at all. Medical care is expensive enough without having to pay $300 a pop just to prove that you're not doing something that you've never given anyone reason to think you might be doing.

Dana, I have NO idea that even Florida would throw you in jail for a small amount of pot. Just by way of information, people who use it medicinally don't necessarily smoke it (there are different ways of taking it orally, and it can even be used topically), and different strains work better for different people, and for different problems, and even at different times of the day.

Strayer said: "I think your neck should be MRI'ed.

Been there, done that, babe. Remember, they found a dead vertebra in my neck, and cut through my throat to get a piece of it for a biopsy. Then, I went through a series of fluoroscopically guided steroid shots, but they didn't help the pain even a little.

Strayer said: "Is it a space issue in both shoulders?"

No, the doctor chiseled away part of both acromion bones and removed both bursas (it's called subacromial decompression). Presumably, the only problems I have now are arthritis on both sides and a somewhat slow recovery from my latest surgery on the left side, and if that is the case, then the surgery I had in April should eventually give me some relief, although I opted for the lowest level of replacement, which means that I knew going in that I wouldn't get total relief. However, if I can just get enough relief to be active again, having had the lowest level replacement will allow me a greater range of activities, and it should be much more durable than a full replacement. Shoulders have a bad reputation for being difficult joints to treat, and I've been in pain for a long time now, and pain often does take on a life of its own, so to speak, and become intractable even when the physical cause is removed. I don't know if this is what is happening, but I wouldn't be surprised either. In fact, I wouldn't be surprised by much of anything anymore simply because I've had so many doctors to disagree with one another regarding so many issues. You don't have to be ministered to by "modern medicine" very long to realize that there's still a lot more things that they don't know than that they do.

Snowbrush said...

Elephant's Child said: " I beat myself up about b often but it hasn't/doesn't help. And I too know that there are other people out there dealing with more and worse, but that doesn't change my situation for the better either."

Marion said the same thing, Child--about getting down on herself, I mean. I seem to take a good bit of comfort in knowing that there are a lot of people who are worse off. When all else fails, I can at least remind myself that things could certainly be worse.

Lorraina said: "Did you ever ask your Dr. re Botox injections?"

No, I haven't. I'll try reading up on it first because I would be surprised if my surgeon would know much about it. Doctors in general don't seem to be up on pain relief. Of course, I could always go to another pain specialist. I did go to one, but I didn't like him, so I would look for someone else.

R.J. said " I'm no help at all--my coping skills aren't very good..."

Actually, you are a help, R.J. Surely, you realize that.

Helen said: "WebMD has info on hypnosis for managing chronic pain .... please check it out."

I will. I promise. Thanks for the tip.

Robert said: "I'm 62 in July. It's the shits getting old."

Another '49er, are ye? I always enjoyed being born in the "first half of the twentieth century" because it made me feel so much more mature than my sister who was born in the '50s.

All Consuming said...

'Obama just reversed his promise to not bust medical marijuana users, doctors, growers, and everyone else affiliated with the drug. Because Peggy is a nurse, I worry that she might lose her license simply by being married to me—sort of a collateral damage scenario. The waste, bigotry, and short-sightedness that is America leaves me aghast.' Ahhhrrrgggg! Stupid Man! Him, not you. Hypnosis can be very successful, it's a gamble, it doesn't work for everyone, it didn't work for me for any length of time, but I know people who've gone from being unable to stand up from an armchair due to such terrible back pain, to getting up and walking briskly round the room in utterly confounded at the lack of pain. Also a thing called EFT, it sounds odd, you tap parts of your body and repeat things again and again, but once again it's been very successful and works for me when I can use my hands to do it. Which unfortunately isn't very often at all. Thinking of you sweetie, xxx

nollyposh said...

Oh SNow... You know what you haven't tried now doncha! (((Hugs))) And yes, yes i promise not to pray for ye... sighhhh xox

Oregon MedPot RN said...

As a fellow nurse and a medical marijuana patient myself rest assured your wife's license is safe! I looked into this for myself and through research discovered there was a landmark case in Oregon in which two RN's lost their licenses for use of a state legalized medication and after winning in court, OSBN made it an unspoken policy that nurses would not lose their licenses for medical marijuana. Just recently however they have made it a spoken rule, in fact when I renewed my license just this last March there was the question of drug use other than prescribed by doctor and they actually listed medical marijuana as something for me to exclude from listing as they now consider it the same as if I was taking oxycodone or methadone etc. I can still lose my job however because businesses will always have the right to refuse a job to someone for any reason including medical marijuana use. So if I'm safe and I'm the patient then your wife being married to you as the patient won't effect her license at all. It seems your like me and have to find something to stress about and if you can't find something easy you create things to stress about. I feel you buddy I do it too but it's something we both need to work on because if we don't it will only drive us to a quicker death and we won't be enjoying the time we have NOW!! Relax, trust in this medication it has changed my life and the lives of so many I know. I truly believe once you get your card and start exploring marijuana as a medicine you will be amazed at the life you get back! I'm keeping my heart happy knowing it will work for you and that the next twenty years of your life will be the best yet! Now you just have to believe it!! Keep your head up, you seem like an amazing genuine person and your wife is so lucky to have you...and of course your dogs! I know my dogs are my children, companions, best friends, and they love us no matter how bad of a day we are having or how bad we hurt they just love and love! All we as humans can do is try to live like they do! I'm hoping for a rested and pain free day for you! I know pain free is asking a lot but I'm staying positive for ya!
Sincerely,
OregonMedPotRN

Snowbrush said...

On various people's recommendations, I'm looking for a hypnotist. Insurance will need to pay for it though, and I'm uncertain as to whether they will yet.

Nollyposh said: "You know what you haven't tried now doncha!"

Asking imaginary beings for personal favors, which they wouldn't grant otherwise? Nope, I haven't done that one yet.

Oregon MedPot REN said: " It seems your like me and have to find something to stress about.

Which isn't at all hard when (a) the law is unclear, absurd, and punitive by nature, and (b) local cops can harass legitimate users, and leave it up to the user to prove, at his own expense, that he's innocent. For example, the Springfield man who was busted for possession of a small amount despite the fact that he had a valid card. That one went all the way to the state Supreme Court.