Any Decent Pain Groups?
I'm not good at this. Don't really know what to say, but I have to do something because I'm losing who I am.
There are no pain groups in my town, which is nuts because I live in Central FL, there are more sick people here than healthy.
All the pain sites I have found on-line are, I just don't know how to put it other than bitch sessions or people talking about their cats.
Perhaps I'm a snob, but I can get that anywhere.
There is no way to really ask for what I'm talking about.
Nor do I want to really discuss this, details, here, now... but I can't do this alone any more... be around people who talk around what is wrong with me.
I hate games.
Don't even know if I'm going to hit send...
Does everyone in chronic pain turn into the crazy cat lady? I can't be the only one who still reads, who still wants to go to rock concerts in my power chair... can I? I can't be the only one who wants to die sometimes.
Who feels like a thing that is sucking the life out of everyone else... I can't?
Perhaps I am.
Maybe depression groups might offer what you're looking for? I am not in your position nor have I suffered from depression, but I am close to someone who does, and what you say reminds me of what he describes and acts out I am not saying you are suffering from depression, but the mental pain they feel may be closer to the physical pain you feel in its effects.
Or you could try disease-specific groups where pain is a major factor of the disease? I'm sure that the dwellars here will let you spill as much as you want when you want here, too ...
The Cellar is probably going to be as good as it gets. We are here for you.
On-Line pain groups tend to be populated by women with borderline personality disorder and fibromyalgia. They are worse in person.
Real Life pain groups tend to be similar, and also include a handful of drug abusers with "bad backs" whose insurance companies won't pay for them to go to other types of treatment and want them weaned back to Tylenol after eating Duragesic patches.
What about a support group specific to your condition?
I may be the only person to ever have my condition. I'm so fucking lucky.
Maybe depression groups might offer what you're looking for? I am not in your position nor have I suffered from depression, but I am close to someone who does, and what you say reminds me of what he describes and acts out I am not saying you are suffering from depression, but the mental pain they feel may be closer to the physical pain you feel in its effects.
Or you could try disease-specific groups where pain is a major factor of the disease? I'm sure that the dwellars here will let you spill as much as you want when you want here, too ...
I am depressed. But it is based on dealing with what is happening to me, being ill, having it be progressive and in chronic pain.
I just had some very bad news and my pain level/mobility issues are increasing at a level no one expected. My bones are breaking and the connective tissues are degenerating with a progression that neither my general/osteo and bone specialist has seen in anyone my age. They have no idea why I have almost no testosterone or why I am not symptomatic. Most of what is wrong with me just has to be "accepted"... advanced facets syndrome, very advanced osteo arthritis & tendinitis among other things that would bore you. Recently I had some heart problems related to taking some meds, we have no idea what will develop from that.... it just keeps going and going and going... I used to climb mountains, I was a cowboy, a bouncer... a professional actor... now I watch this room get older and other people play with my son because it hurts to move.
It's just a sea of pain, my ribs are hurting so much breathing hurts.... I don't want to go on right now.
Edit- I do go to a psychologist and my GP and I talk, they don't put me on anti-depressants, just a mild anti-anxiety. They say it is normal to feel the way I do about this and say it is more anxiety and trauma from what I live with every day.
Damn, that sucks. Nothing that I can say relates directly to your experience, and I know that. I can offer prayers and good wishes, which is something that I don't do lightly.
That is very kind of you... thanks.
Feeling very self-conscious about posting this thread now.
I understand why, but you don't have to. Everybody needs a good rant every now and then.
Still kinda' in shock... living in Winter Haven and no pain groups... it is insane. But, it should not surprise me, we also got the worst rating for disabled accessibility and sidewalks for a city our size in the nation for several years in a row not too long ago while maintaining our unbroken chain of Most Beautiful City In America awards.
Not too long ago I was told, this is not a lie, that I was not going to be able to shop at the local JC Penny, because they were not going to be able to have the shirt displays far apart enough for my chair and not enough staff to help me... and he was pissed for having to explain it to me. I just wanted one Guyubara and they are the only store in town that has them in cotton. Wheee... this is fun.
ADA... what is that?
I think it's the American Dental Association. Everybody got nice teeth down there?
If you thrive on that kind of entertainment, you could start making some waves and seeing how much free stuff you end up with ... not to mention the overall benefits to you and others. Got any eager, young television reporters within easy reach?
No shit... the concert hall that moved me away from the wheelchair section (balcony seats next to Dita, Manson's Wife) and put me next to the sound board on the floor had not heard of it either.
Ended-up with another broken rib and two weeks in bed that night.
People will get in front of you in line... it never ends.
Perhaps you can hook up with the
pxe people (their Florida contact is in Winter Haven,) and the
ALS folks, as well as the MS and Spinal Cord Injury groups, and get some local social activism going?
Thoroughly bizzare that you haven't a local pain management support group, seems like there is darn near
everything else.Yeah, with my condition being unique, it is very... I don't know.
There are two that sound possible, the osteoporosis group. Though I suspect a group of older women who do not deal with the complexities that I do nor the pain levels, and the spinal cord injuries group. That one just puts me off because of the name... Winners on Wheels... again, I'm going to call, but I suspect that it is not about dealing with illness and pain but specific to dealing with being in a chair and one event that put them there.
If there are no suitable groups, when you've tried the leads you have, are you the sort of person to start your own? Maybe you're not alone in wanting another kind of group locally and you could start the ball rolling?
Meanwhile don't feel self-conscious about posting here, as Wolf said, we're here for you, it's what the Cellar's for.
rkzenrage
I think what you are looking for are tools or techniques for releaving pain?
I don't know if meditaton would be helpful. Medical marjiuana ? and I am being totally serious. Massage therapy , whirlpools stuff like that.
Since pain is pain,I suggest looking at other chronic pain groups like cancer.
I think you said it right..just accepting can be the hardest thing. I see your inner strength in your posts. You just want to feel better. I understand. I wish for relief to come to you.
I have been doing Yoga and meditation for over twenty years, been in pain for a long time, so have been in the pain system for a while.
As for pot, I smoke and do Leary biscuits from time to time, but try not to have it in the house. It helps with nausea and muscle spasms better than anything else (I can't take marinol, it makes me very ill). But, I have a two year old and, mainly, do not like to jeopardize my wife's job due to the fuck-head anti-plant Nazis who like to see people suffer so textile and lumber firms continue to make their profits as they drink their martinis. That is the fact, if you are against medical marijuana you want people to suffer, end of story.
Until recently, I have had a very positive outlook on this, and still know that everyone has their shit, this just being mine... just a bit overwhelmed right now.
I was thinking more on the order of getting folks from other wheel-chair bound groups on board as far as approaching local businesses regarding access ... but some of the support groups may have enough similar issues. They tend to be cliquey, though ... if you're not one of them, particularly, you're the enemy.
I have already experienced that... not so much "enemy" but outsider. At first they will talk about how welcome I am, then never tell me when the next meeting is. Had that with a depression group already, made-up, I later found, of those with mental disorders.
snip~Though I suspect a group of older women who do not deal with the complexities that I do nor the pain levels, ~snip
How do you know they don't deal with the same pain levels? Even talking to them about pain, it would be hard to compare because a lot depends on attitude.
They, being older and their pain level increasing over a longer time line, gives them a chance to build a tolerance and acceptance. They probably have a much more modest view of their expected mobility, complacency if you will.
You, however, have apparently had an accelerated increase in pain, plus you have things you want to do, places you want to go. That makes it much harder on you because it's a much bigger obstacle to the life you've been used to.
Winners on Wheels... again, I'm going to call, but I suspect that it is not about dealing with illness and pain but specific to dealing with being in a chair and one event that put them there.
You may be right but it's worth a shot. They maybe open to discussion on anything and I sure they've all had to deal with being overwhelmed at some point.
Good luck in finding the support you're looking for and remember you've still got us. :thumb:
That was poorly worded, I did not mean to imply that their pain was "less" than mine... just different. I have more types of pain than just that from osteoporosis. I am sorry if it seemed that I meant to belittle their pain... I would not do that, as I live with their pain every day.
Just because they are older does not mean they have been dealing with this longer, my first diagnosis was at 13.
I do hope you are right... and about this group. I recently reached out to a group and was shunned. It was very painful & has a lot to do with how I feel now.
The lady at the osteoporosis group sounded awesome.... I cannot thank you enough for finding this for me.
Not getting my hopes-up yet, but she says that one of their members is a man in his thirties, a cop and another, his dad. She was fine with the fact that I have other issues, says that the all talk about their other stuff. Was happy with my past in meditation and yoga and said they may like to have me talk to the group about it because they are always looking for exercises they can do. Being useful would mean a lot... not getting hopes-up.
Thank you.
Is your doctor willing to prescribe what you need to live a decent life? Most docs who deal with high levels of pain know the difference between need and addiction.
That is a very general statement that also sounds like a loaded question.
Are you trying to say something else?
Is your doctor willing to prescribe what you need to live a decent life? Most docs who deal with high levels of pain know the difference between need and addiction.
I take that to mean that there are some people who fake the level of their pain in order to feed an addiction, but your doctor should be able to see your obvious need for more effective pain medication.
I hope this group works out for you Rkzenrage, it does help to know you're not alone :)
Stormie
My medication and therapy are changed constantly... I get a surgical epidural on Tuesday (sometimes they work, sometimes they do not, but they are always a double-edged-sword, doing long term harm for short-term relief, along with the risk of being put under).
I don't think it was a loaded question...I think it was just intended to encourage you to seek out the strongest stuff you can get your hands on, if indeed you can get your hands on it. No one is suggesting anything sinister.
I can't remember why I was doing it, but a few months ago I was looking for chronic pain resources online...and there's virtually *nothing*. Now *that* is sinister...almost as though someone (the drug companies, perhaps) don't want anyone else mucking about in their playground.
You have a support group right here on The Cellar, man. Use us as you see fit, and don't worry about appearances. You have problems, we have soft shoulders.
I did not accuse, it was a question. I am often asked leading questions with a lot of reasons behind them. I don't know why but people have weird reactions to those in pain.
Strongest are not always best, I don't react to Opiates the same way most do. I cannot sleep on them and they change my personality when on large quantities. I have had very bad experiences with them... more, and more varied than I can say. Most Dr.s won't listen to me and some have given them to me without my consent.
BTW... this group really helps me with my depression, thanks all of you.
Went to my Dr. appt. and he did not lock me up after I told him about my recent "impulses".
He really wants me to address the offer by my local librarian (reading to kids) when we get the new lift for my chair and he is talking about starting a pain group in his practice.
Again, I cannot thank you, Wolf, for helping find another group to try. One that sounds more promising than any that I have spoken to before.
My parents are very happy about it, they are a bit freaked-out about my recent downturn.
I have not discussed it here.
Nope, not trying to ask a loaded question; thought it might be a bit blunt if I asked if your doctor thought you were an addict. Hard to get an idea since I don't know you or your situation well. I know folks who howl about their pain (granted it's probably not like yours) and will rarely get anything for it. If I was trying to say anything it's that there are a lot of people in pain who don't have access to what would help them.
Opiates are often prescribed because they alter the way your mind percieves pain. Your reaction to them explains why the solution is not as simple as getting you more morphine or oxy.
Nurses may be of good help to you. They often see a lot of people in pain and you're far from the only one who has a negative reaction to opiates.
Hope that helps. Medical problems can be extremely frustrating I know.
Well, there's these guys you probably already know about and there are
several pain management specialists on staff here.
Perhaps they didn't know that a group might be a welcome addition to their area of practice? Or at least involvement with a therapist specializing in pain management issues?
Been in the pain system for a long time in this area as well as having been a patient to my GP and Osteopath for many years. The main problem with most pain Dr.s is that they are one-trick-ponies. They will try upping my existing meds then what ever their favorite therapy is; epidurals, implant, target injections, etc, etc, etc.... and when I don't jump up and get "well" they get dejected and pawn me off on their PA who usually "doses" me and I end-up sick.
Not getting what I need is usually the opposite of my problem.
This has happened to me, in one form or another, three times so far.
Right now, I am with one who has pawned me off, but is still starting to get a bit frustrated.
However, he is staying with me and I think he is willing to stay the course and take-up the challenge.
The problem, as described to me by my regular Dr.s, is that they are not trained to deal with more than one issue. A pinched nerve, arthritis, one spinal issue... that is what they deal with day-in-&-day-out and what their training was really centered on.
People like me are usually terminal patients and just jacked-up on morphine (which is what I keep trying to keep them from doing)... finding that balance of reasonable pain management and what I am just going to have to live with is really their job. It is a lot of work, not just a visit every three months. It has been a growing experience for him and I have learned more patience with the medical community through this.
Have you tried any combinations yet? High levels of anything (THC, morphine, fentanyl, etc) will always have consequences but if a small amount of something takes the edge off that might allow another drug to work better. One of my favorite past times while on pain meds was to eat hot chilies. They didn't burn near as much yet still boosted endorphins (making me feel slightly better). Hot chilies aren't a magick cure of course but it should illustrate my point.
It really sucks that you have to be on meds for any reason and I wish it were as easy as saying meditate and and eat hot chilies.
I do eat a lot of capsicum, it does help with my arthritis, as well as the vinegar in the hot sauce helping also (with the Ph thing). Mostly, however, just because I was raised in the South and this illness gives me an excuse to eat more peppers and sauce.
You must have missed the pot discussion earlier.
Edit~ The shot of apple cider vinegar a day does actually work for stomach issues and with swelling and arthritis, believe it or not.
Not a cure like the Enquirer and Sun touted in the check-out-line, but a noticeable difference.
I can't speak for arthritis but vinegar did help some stomach issues I used to have too.
It's all a balancing act. How much of how many things can you do while living the best you can.
Just to clarify is it all opiates that give you trouble? Different kinds (codeine vs morphine for instance) use different parts of the plant. it's probably the case the whole group gives you fits but it's not always that way. Opiates are sort of a problem because they work so good. Standard procedure is to just give more and as a result other options / alternatives don't get explored like they should :-/
I do take one opiate, but it is pretty far down from the organic and I can't take it after six or so, or I won't be able to sleep. I have taken more kinds than I like to think about.
Getting a cottle epidural tomorrow (through the tail-bone because I have almost no epidural space)... I Hate them... but not as bad as I feel now.
Still, don't like getting put under and sucks having to have them, the long-term effects, well, they suck.
Think happy thoughts for me, please.
The next few days will be rough, it takes a while for the meds to dissipate and I experience "discomfort" as it compresses my spinal cord.
Edit... after that I should feel better for a while, as long as the weather behaves. Been sucky lately, however, the forecast is good, so I'm getting this for my son's third birthday.
*Sends good and happy thoughts to rkz*
Thanks... bout' that time. See ya'.
More happy thoughts on their way to you ...
Apologies for the length of this reply...
Have you tried NLP? (Neuro Linguistic Programming) Quite a few people use it for commercial/corporate purposes, i.e. sales training, interpersonal skills, blah-blah-blah. It has another use, however. It can be used for pain and stress management. Now before you think this is just some kind of commercial...
A short story: I have degenerative arthritis in my spine which, with repeated injuries, caused me to blow out two disks. One merely herniated, while the other ruptured and took a piece of my spine with it. A bone shard the size of a pencil lead was pushed into my sciatic nerve which in turn lit me up like a Christmas tree. I had pain that would give me tunnel vision, knock me out and then wake me back up again, weeping like a damned baby. In addition, I have an unnaturally strong resistance to toxins which unfortunately means that things like pain killers, alcohol, and (gack!) even weed, tend to have dramatically lowered effects on me. (to all those who are about to tell me "you just haven't had good weed" please be aware that Yes Goddamit!, I have! It just doesn't work.) Now, because of all this, I was overdosing on 800mg Vicadin and chasing the OD's with three finger screwdrivers, and this would give me maybe 20 minutes of relief. In fact, I gave myself chemical hepatitis and had to detox so I could have surgery. Doc said I would have killed myself in pretty short order at the rate I was going.
The point of this rambling sob story is that most of the time, I had to grit my teeth deal with it, for months on end. Subsequently, I tried any number of ways to get the pain under control. I ended up using some meditative breathing techniques that, I found out later, appear to fall under the category of NLP. It helped. To be frank, I'm still never without some degree of pain, I just process it better these days.
Disclaimer! - I am NOT selling this. Nor am I specifically endorsing any form of commercial NLP techniques as most of it is promoted as corporate Ra-Ra bullshit. NLP is, as far as I'm concerned a *category* of pain management that has been useful for some. It's worth checking into even if it only manages to point you in the direction of something that helps.
rkzenrage, I feel for you, I really do. I wont offer sympathy, as I know how sour that is when you're going through this kind of stuff, but I will offer you all my best. I'll be rooting for you.
It's a caudal epi. Not cottle. Just FYI
Happy thoughts, RZK. You'll find they're still coming your way when you come to and read this.
Thanks Brianna... it went pretty well, though, as you would suspect, my tail is very sore after having a large needle shoved through the tail-bone. It takes a few days for it to be easy to sit.
Thanks for the heads-up Ridge, had a double-lamectamy (sp?) down there, then had to have my sciatic partially reconstructed. Both discs ruptured, part of the surgery never really healed due to my osteoporosis and other issues. Without the stimulator implant I would not be able to walk at all, even with a cane short distances.
I have practiced Yoga and meditation for over twenty years, it is a large part of my pain management system.
BTW... I appreciate all the support. Feeling much better now. Still a little tender when sitting down.
Tomorrow is a big day for me, after a Dr. appt. my father is loading-up my power chair (says he has the kinks worked out of his lift) and I will be spending the day downtown with friends and my niece. First to the coffee shop then to the cigar store where a good friend of mine just opened his pipe making shop in the back. Really looking forward to it.
Hopefully will break the rut a bit, I need it. Hope the rain holds off, has not lately.
Hope the weather stays good for you for your outing.
It looks like you had fantastic fun, rk. I'm not into kids at all but Finn looks fine to me. Sorry to hear about the pain, but it was worth it, right? You seem like a great dad to me.
Destroy!
Man, that looks like a party Richie Rich would have, in the comics.
Nobody could have been bored. Good job. :thumb2:
That looks like an absolutely fantastic party!! You have a handsome young man on your hands! The Thomas the Tank Engine scaled to his size is about the cutest thing I have seen!!
They got inside and raced them... can't show it, won't post other's kids. There were thirty there. The race pics are hilarious though.
Don't know bout' Richie though, all of our stuff was made from crap from around the house and my friend gave us a HUGE discount.
It's not how much it all cost, it's about how much fun everyone had.
Got it. Thank you. We had a blast!
Man, I still remember Thomas.
I remember, for christmas one year, I guess I was about three or four, what I wanted more than anything else in the WORLD was a Mavis toy. My mother searched high and low for weeks to find one, and finally had to buy one off someone else instead of the store.
Ah, to go back to the days when all I wanted was a 4x2x2 chunk of plastic and metal. Nowadays, I just wanna go home.
They got inside and raced them... can't show it, won't post other's kids. There were thirty there. The race pics are hilarious though.
Don't know bout' Richie though, all of our stuff was made from crap from around the house and my friend gave us a HUGE discount.
Not the cost, the variety of stuff, all with the Thomas the Tank Engine theme. Stuff inside, outside, all over the joint. Costumes, goody bags even a Thomas pinata........amazing. :D
Man, I still remember Thomas.
I remember, for christmas one year, I guess I was about three or four, what I wanted more than anything else in the WORLD was a Mavis toy. My mother searched high and low for weeks to find one, and finally had to buy one off someone else instead of the store.
Ah, to go back to the days when all I wanted was a 4x2x2 chunk of plastic and metal. Nowadays, I just wanna go home.
Most of his are wood, those are his favorites.
It looks like an amazing party rkz, it's evident Finn had fun. :)
He did, and on the fourth.
Swing and sparkler.
Awesome photography, both on that one and the one on the other thread.
Is Finn *in flight* as he attacks that pinata? His feet look like they're off the ground and in motion!
He spends most of his time like that.
Yes, he is.
BTW, back on topic, been using the power-chair more and I can't tell you how much better I feel.
Ribs feel much better, I'm so much less depressed it is nuts. Been hanging-out with my niece every Wed at a local tobacco shop, having lunch and BSing.
Just getting out in the sun and not in this room without it harming me more!
We now have a hydraulic lift for the car thanks to my parents and it works great!
The feeling of freedom, making new friends and being useful is indescribable. I may even start reading to the kids at the local library soon. Not exactly stretching my acting wings, but will be an audience of some kind soon and be doing some good. I may do the hospital again (I used to do that in college, when working on my dialects). Been helping a lot at the tobacco shop when people need help with pipes and pipe tobacco. It is a time consuming thing to discuss and I am more than happy to talk with them about it, plus it helps the business in the long run.
All with the help of that technology.
Wow.
Still can't wait to go to the osteo group.
So glad to hear that you're feeling better. Even if I don't have any experience of the pain aspect, I do well understand how being cooped up indoors can undermine your sense of self completely. Reading aloud is an unerestimated art-form, make the most of it and you can be a one-man show, as I'm sure you know.
All the best.
sunlight and fresh air is a great mood booster :)
Check around for a production of Rocky Horror Picture Show, Dr Von Scott. :D
Used to go to them when I was a kid... been to over sixty.
I think the nearest one is Tampa or Orlando. I don't want a pussy on my chin.:thepain3:
You're missin' out, dude.
I am going to annoy you all again , and I feel very sorry about that .
Pain is in the mind . Make your mind refuse the pain . You do not have to be a Buddhist to do this . People should stop thinking that spiritual life lies in mystic cultures , or in psychobabble or in science . Just refuse pain . Drink a huge glass of Champagne and read poetry . And if the pain is still there , that is wonderful . It means that you are a human being and that you cannot cope with the idea of dying . Try religion at this point , but do not worry if religion is just as bad as everything else .
Enjoy the pain .
.... and try to turn it into something else .
.....and it does not matter a jot if you cannot turn it into anything else .
....stay in bed all day , drink like a fish , give up your job , spit at your in-laws .....
Nothing really matters at all .
Does it ?
You're missin' out, dude.
Not like that! You did not get the joke, I guess... "on" my chin is a great place for it, not .... oh hell, it can't be explained unless you've been to the show.
& Buddug as a Buddhist and someone who has practiced Yoga for over twenty years I am not annoyed at your statements, I just think they are a bit naive.
The osteo group went very well today, learned a lot about how certain meds cause bone loss.
Been to the show, don't remember that part of the audience's script. Maybe a local phenom.
Glad to see my deadpan delivery skilz remain sharp.
Same in LA and Tampa when I went... the announcer's chin has a large cleft. We always yelled that he has a pussy on it and on the close-ups someone always jumped-up with their hands together like they were screwing it. It is on a CD I used to have with the audience participation on it, a gift I got rid of. It was very sad.
rkzenrage , you do not seem like a Buddhist to me .
Perhaps you can put your legs over your shoulders though ?
Not any more... I'm not a monk. Westerners have strange concepts of Buddhists. Many seem to think we are all completely mild all of the time. I don't get it.
Well , we expect mad gymnastics with a few weird thoughts that we don't understand .
You can't do the gym , and you don't have no weird thoughts . You aint no Buddhist, rkzenrage .
I have plenty of weird thoughts... just keep them to myself most of the time. People ostracize me for it. I used to be able to do all the cool stretching, but that was years ago. Still do muscle isolation and breathing exercises.
You sound absolutely charming and very interesting rkzenrage .
Thank you, that is very kind of you.
I'm sorry guys & gals if I've been a dick lately... I've been in a lot of pain for a bit and I'm actually terrified about the future.
Not many in my "real" life know about this beyond my immediate family... I fell last week and did something to my hip. It is getting worse, I think I may have a small fracture, I know I bruised the bone pretty badly and am pretty sure I did something to the joint.
My family is talking around it, but I know that they are thinking about things that I don't want to hear... things that have to do with what little independence I have left. I'm not ready... and I can't think clearly through all this pain. There's so little left of me.
I'm being hollowed out a little at a time.
The nice thing about the cellar is that we can all be dicks now and then and folks let go of it. I don't think you've been a dick lately though. Take care of yourself man, we're all pulling for you. G
The nice thing about the cellar is that we can all be dicks now and then and folks let go of it. I don't think you've been a dick lately though. Take care of yourself man, we're all pulling for you. G
Yup, we certainly are.
I'm sorry guys & gals if I've been a dick lately... I've been in a lot of pain for a bit and I'm actually terrified about the future.
Not many in my "real" life know about this beyond my immediate family... I fell last week and did something to my hip. It is getting worse, I think I may have a small fracture, I know I bruised the bone pretty badly and am pretty sure I did something to the joint.
My family is talking around it, but I know that they are thinking about things that I don't want to hear... things that have to do with what little independence I have left. I'm not ready... and I can't think clearly through all this pain. There's so little left of me.
I'm being hollowed out a little at a time.
Not meaning to pry, but are you practicing Buddhism with a teacher or solo? I found it often helps with these bigger life issues, i.e. terror about the future, to be able to talk to a teacher in dokusan or daisan. I'm sure your sitting practice has brought you face to face with plenty of pain, both physical and emotional, sometimes it can help to have another ear who has been around the block, so to speak.
Maybe this is old ground for you, but I thought I'd share. As others have said, we're rooting for you.
Here are a few points I found, when fighting fibro, and a broken neck (well really, 2 vertabrea, not the spinal column)
Foods That Fight Pain
According to Neal Barnard, M.D., author of Foods That fight Pain, foods work against pain in four ways:
(1) They can reduce damage at the site of an injury;
(2) they can cool your body's inflammatory response;
(3) they can provide analgesia on pain nerves, and
(4) they can work within the brain to reduce pain sensitivity.
A major factor in the successful treatment of fibromyalgia, as well as chronic pain, is specific nutrients that exert a strong regenerative effect on the body's systems, including the nervous system.
Christine Craggs-Hinton, a fibromyalgia sufferer, and author of The Fibromyalgia Diet, made the important discovery that changes made to her own diet had the greatest positive impact on reducing her fibromyalgia symptoms. Christine stresses that it is important to take responsibility for your own illness, a part of which is being fully aware of what you eat and drink.
Rebuilding and Healing Our Bodies
Foods contain many components which work together to provide optimum health. All foods, in their essential, unadulterated form, provide nutrients that support growth and healing. Diet treats the causes of disease, not just the symptoms, by balancing the body's systems and by helping the body to repair itself. Whenever we supply ourselves with missing nutrients, our bodies have the raw materials necessary to rebuild and heal.
The importance of a good diet is nothing new. What is new is the affirmation that the incidence of most chronic diseases has a dietary link and that a good diet can help prevent as well as treat disease.
Hippocrates may be right. Food is our best medicine.*
* (For those currently on medication or on a specific diet, it is important to
consult your health practitioner before making any kind of dramatic
changes in your diet.)
Vitamin C
A diet high in vitamin C containing foods such as red and green bell peppers, broccoli, Brussels sprouts, cauliflower, strawberries, spinach, oranges, cabbage, grapefruit and cantaloupe can help destroy free radicals before they enter the cells, where they may eventually result in clogged arteries, heart attacks and strokes.
Vitamin E
Wheat germ, rice ban, sunflower seeds, walnuts, almonds, hazelnuts, cashews, peanuts, soybeans and vegetable oils in general - all containing significant amounts of vitamin E, protect cell membranes.
Quercitin
Yellow and red onions, red grapes, broccoli and yellow crookneck squash contain another effective antioxidant called quercitin. It is one of the few food substances that has been shown to block cancer both in the earliest stage and in tumors. Quercitin also protects arteries and discourages blood clots.
Grains
Grains also help suppress cancer-causing agents, and due to their high fiber content help reduce constipation. The gummy fiber found in both oats and barley helps lower blood cholesterol as well.
Antioxidants
As reported by author Jean Carper in her books The Food Pharmacy, scientists suspect antioxidants are the reason that fruits, vegetables, legumes, grains and nuts promote health and help prevent diseases such as cancer, heart disease, lung disease and arthritis.
Antioxidants quench toxic molecules known as free radicals that are a by-product of normal metabolism. They can be produced from exposure to the sun, x-rays, tobacco smoke, car exhaust and other environmental pollutants. These free radicals damage DNA, corrode cell membranes, kill cells and are directly responsible for gradual deterioration during the aging process. Eating foods high in naturally occurring antioxidants could prevent the onset of degenerative diseases and enable people to live out their lives in optimum health.
Ellagic Acid
Strawberries, blackberries, raspberries, blueberries, cranberries, grapes, apples, Brazil nuts and cashews all contain ellagic acid. This antioxidant helps block four different types of cancer-causing agents.
Beta-Carotene
Fresh and dried apricots, broccoli, Brussels sprouts, green cabbage, carrots, kale, dark leafy lettuce, spinach, winter squash, sweet potatoes and tomatoes are all high in beta-carotene. This is the substance that converts to vitamin A in the body, and is considered the major reason why fruits and vegetables protect against cancer, particularly lung cancer. A diet high in beta-carotene containing foods may reduce the risk of lung cancer even among people who have smoked cigarettes for years.
Potassium
High potassium foods, including potatoes, cantaloupe, bananas, tomatoes and low-fat yogurt, seem to help protect blood vessels against damage from high blood pressure.
Cruciferous Vegetables
Cruciferous vegetables (cabbage, broccoli, Brussels sprouts, cauliflower, turnips, horseradish, kale, radish, rutabaga) contain compounds which block the formation of cancer, particularly colon cancer. Lower risks of breast, uterine and hormone-dependent cancers are also linked to high intake of cruciferous vegetables.
Beans
Beans have been found to be effective in lowering cholesterol and regulating insulin and blood sugar levels.
Garlic
Raw garlic helps kill bacteria and boost immune function, while cooked garlic can help lower blood cholesterol as well as help prevent bronchitis.
MSM
MSM is not a medicine, a drug or a food additive: it is a food. (Methylsulfonylmethane) is an organic form of sulfer which can be found primarily in fruits, vegetables, meat, milk and seafood. It offers a natural way to reduce pain without serious side effects.
MSM has shown a remarkable ability to reduce or eliminate muscle soreness and cramps. People with arthritis report substantial and long-lasting relief with MSM supplements. Taken along with glucosamine, MSM can relieve pain and help repair worn or damaged cartilage in joints with healthy, flexible new cells. (3)
Calcium
Calcium and magnesium are the two minerals most often recommended for treating pain. Calcium is recommended for arthritis, more as a preventive than as a painkiller. Recently, the American Journal of Obstetrics and Gynecology reported that pain from pre-menstrual syndrome was reduce by half in women given supplemental calcium. (4)
Magnesium
This mineral, which is found in soybeans, whole grains, nuts, seeds, vegetables and fish, has long been valued in treating migraines because it acts as a muscle relaxant. It is considered one of the most promising nutrients in headache research. (5) In a 1996 German study of 81 migraine patients published in the headache journal Cephalgia, 41.6 percent of subjects taking oral magnesium reduced both the duration and intensity of migraine attacks. They also reduced their reliance on medications to control their migraines. (6)'
Glucosamine and Chondroitin
Glucosamine sulfate has been shown to be effective in reducing arthritis pain, which may be due to its ability to repair joints. (7) Used together, glucosamine and chondroiten can reduce joint pain and may help build new cartilage, according to a study at Boston University School of Medicine. The treatment worked so well for Jason Theodosakis, M.D., who suffered from severe osteoarthritis, that he is now medication free.
Fatty Acids
American researchers suggest that a combination of magnesium taurate and fish oil may help prevent migraine headaches, based on the ability of both to reduce blood vessel spasms. (8)
A 1997 study showed that gamma-linolenic (GLA) and alpha-linolenic (ALA) fatty acid supplements reduced the severity, frequency and duration of total migraine attacks by 86 percent. During the six month study, 22 percent of the 169 patients no longer had migraine attacks, and 90 percent experienced less nausea and vomiting. (9)
Arnica
This anti-inflammatory action of arnica can be used topically to ease the pain of bruises and sprains.
Calendula
Calendula is an excellent herb for most skin disorders, including diaper rash, sun burns, bruises and insect stings and bites. It has a soothing effect on irritated skin by reducing inflammation and combating infection.
Cayenne Pepper
Cayenne contains capsaicin, which stimulates the brain to secrete endorphins that help block pain signals. A recent trial showed that cayenne helped reduce arthritis pain (10)
Chamomile
Chamomile contains bisabolol, which has anti-inflammatory properties and relaxes the muscle lining of the digestive tract. Several studies indicate that chamomiles is a good digestive aid.
Feverfew
Feverfew prevents and treats migraine headaches by inhibiting the production of inflammatory substances. In a 1988 randomized double-blind, placebo-controlled study reported in Lancet, feverfew treatment was associated with reduction in the mean number and severity of migraine attacks. (11)
Ginger
An herb that is reported to stimulate blood circulation, which helps to heal skin irritations such as cuts, insect bites and stings and bruises. It is a strong antioxidant and is an effective anti-microbial agent for sores and wounds.
Ginkgo Biloba
Ginkgo biloba extracts have been shown to reduce leg pain (12)
Peppermint
Peppermint can be used to soothe digestive pain. "Peppermint is probably our best-known remedy for stomach problems," says herb researcher Daniel B. Mowrey. It owes its healing power to an aromatic oil called menthol.
Peppermint Essential Oil: - has many therapeutic uses and may be used for a wide variety of conditions including respiratory and digestive conditions as well as musculo-skeletal pain. Used in massage, peppermint has strong anti-inflammatory and analgesic properties and also assists in promoting blood flow to the affected areas. On the emotional level, the aroma of peppermint oil will relax and refresh the mind as well as the body, helping to uplift the spirits and restore courage and mental focus.
Ginger Essential Oil: - obtained from the root of the ginger plant, ginger, like peppermint, is a highly versatile medicinal plant with thousands of years of therapeutic history. The oil is warming and toning and has particular application to all musculo-skeletal conditions, soothing pains and aches and also helping to reduce fever. Inhalation of ginger also helps to boost tired spirits and strengthen resolve.
Pine Essential Oil: - In traditional herbal medicine, the shoots of young pine trees were used during bathing to treat rheumatism, promote circulation and relieve nervous fatigue. Therapeutically, pine essential oil is very effective in relieving the pain caused by conditions such as arthritis, rheumatism and gout and promotes circulation. Strongly recommended in the treatment of post surgical or post illness fatigue, pine oil is refreshing and helps to lift the spirits.
Carrier base consists of arachis, wheatgerm, almond and grapeseed oil. These carrier oils are also chosen for their nourishing and healing properties.
I did not find any groups, in my area that helped deal with my pain. I wanted a way to deal with it, or remove it from my life, NOT hearing about how everyone else was tired, sick, depressed and so on. So I went and found out all kinds of information on my own.
I have used with great sucess: Aromatherapy, changing my eating habits, heat therapy meditaion, light exercise, Shamhalla multi-dimensional healing, crystal healing, Chakra balancing and positive attitude.
The attitude was the hardest! Getting out of the "I am depressed, because I am in pain, and in pain because I am depressed" circle was difficult. I gave up on whole days, years ago. I even went to 15 min increments. Then gradually went up to hours, then a portion of the day ( before breakfast, then after breakfast, until lunch... etc) and now, years later I am on full days. I am still fighting pain, it has not gone away. But now I can look at it differently. More... "ohhh.. did a bit too much yesterday, and am very sore, so today I will work on the computer, have a bath, and mellow." This is not something I should do to deal... its my JOB, in order to bounce back.
My faith in the Goddess, and knowing she will not give me anything I can not handle in one way shape or form, remembering my mood DOES effect my children and deciding to enjoy this life has helped me. I hope.. in time, something you stumble across, will allow you to have the relief from pain enough to enjoy what this life has to offer you. Your posts are usually quite enjoyable, and I hope something someone offers helps you deal with the hand this life has dealt you.
I am practicing alone, cannot sit zazen any longer, my practice is lying or reclined now.
I appreciate the food tips, I have been studying this for some time, I also avoid all dairy and nightshades as well.
My pain levels have been nearly intolerable for some time... I have had to use the chair almost every time we have gone out lately.
My stimulator stays on.
Yesterday the Dr. that deals with most of my meds doubled several of them.
I don't want to begin to think of what this is going to do to my next liver count....
The last x-ray I had looked pretty bad for my upper spine. I get a CT scan now because they want to see just how much faster the bone and connective tissue degeneration is progressing.
I know it should not, but the curiosity aspect to my treatment bothers me... I don't really know why. I think THAT is what bothers me the most. I am usually pretty self aware about this kind of thing.
Been very off-balance since a trip to Sea World where I was treated pretty badly by a lot of people and some of the staff. Like a thing, something to be taken advantage of, to be swept aside, ignored, stepped over, gotten in front of. Not human, not fully. I would say "excuse me" after they got in front of me in line, stepped in front of me before an aquarium, or put their kids in front of my chair and they would just look at me and turn back around. Not worth it. What am I going to do? It was all day, for two days.
Someone assigned to help me get my food at a buffet, walked away from me as soon as her supervisor left... she stood ten feet from me and ignored my calls. A guest went and got my mother-in-law, who helped me as her food got cold... there is more.
I am going to go back... but when? What to do. It has to be before I get worse.
I wonder if anyone is reading this any more? I don't really think it matters.
We're still reading man. Your willingness to share is admirable. I don't know if I could write about it, but I'm learning something about your perspective. thank you. g
I'm still reading. Sadly all I can suggest is that you carry around a cattle prod next time you goto SeaWorld. I say that without sarcasm too.
I am still reading, keep typing/talking.. Venting helps you, and helps us understand what other REAL people go through. I have done some more digging, but other than the food choices, aromatherapy, meditation, meds, and everything else you are already doing.... there is not much else I can suggest. The crystal therapy helped me, as well as the reiki/shambahlla healing. Also you could try removing negative energies from your home ( if you have not already)
I have lit a candle for you, and hope something helps your pain.
I'm still reading. I, too, think it's good to vent - I know for sure that it does you no good at all to bottle stuff up. I hope that the support we can offer through the Cellar helps a little. Sometimes all the Cellar can be is a little distraction, but sometimes it is good to know that there are people wishing you improvement, strength, patience and a high-voltage cattle prod :eek: !
All the best from across the water.
I've read all 96 posts so far in this thread. I'll keep reading it too. So keep posting.
I don't have much to offer in response, but wish you well.
Another fun fact... the Sheraton hotel's disabled room I stayed in was inside (not a room with a view), smaller than a regular room, and $30-60 more than a regular room. When I told them I did not want a disabled room (I only use the chair when I have to be out for long periods), they put me in it anyway.
They only took the charge off after my wife complained about it for a while.
All of the handicap seating at Sea Word is obstructed view... the hits just kept on coming.
I am fine at home and still do all the Yoga I still can and meditate regularly.
I have a very positive attitude about my condition, usually. Something my Dr.s constantly compliment me on. I think of myself as a very fortunate person with this being my negative thing, we all have something in our lives that causes us pain.
This really blindsided me.
BTW, I have an inflamed lymph node in my side that is pretty painful that may be infected... CT has been ordered for Mon.
Thank each of you for your support. As to the advice on how to deal with them, like a cattle-prod, thought I know it is in jest, I will not lower myself to their level. Rudeness in return just makes me the same as them. It is a quandary.
... I will not lower myself to their level. Rudeness in return just makes me the same as them. It is a quandary.
On a completely other and frivolous level, the only way I could cope with the idiots who, for example, have to stand by the bus exit door because they will be getting off the bus (though that may be thirty stops away and 150 other people have to get off the bus before them) is to admire their self-centred attitude and their stupidity. Would that work for you, RK? It is an admiration that has to be cultivated (forced at first) but in the end I found it a helpful thing to do.
Sorry, but I'm not sure I understand what you are saying?
You're right of course rkzenrage. I'm in perfectly fine shape but in certain places people treat me like I'm not there too. Very infuriating, like they have a red carpet in front of them.
Sorry, but I'm not sure I understand what you are saying?
You don't want to descend to the ignorant level of the fuckwits who treat you as though you weren't human by acquiring a cattle prod and using it on them. Is it possible, however, to take a mental step back and admire their ignorance?
I managed this mental trick with the stupid people who stop and stand still at the bottom of escalators (moving stairways) because they don't know which way they're going next, or those who stand close to and obstruct the exit door of a bus for several stops because they will need to get off the bus and are oblivious of the fact that so does everyone else who is travelling. These things used to make me disproportionately angry and I dealt with it by the trick of admiring their self-centred-ness. Initially this was a forced reaction, but eventually it came more naturally to me and was a hell of a lot more comfortable than fuming all the time.
I do repeat that I fully understand that the irritations that used to get my goat are not comparable to the rudeness you have described and therefore my method may be totally inappropriate.
Wishing you all the best.
Got the handy-van yesterday. It is amazing. The hydraulics that lower it when the ramp comes out is very cool. Everything is automated, except the straps to tie my chair down, but those tighten themselves down. My son's car seat is right next to me, so I get to interact with him as we travel (though he likes to kick my chair... good with the bad).
Making some small cards to inform those who park in the loading zones of the disabled parking spots that I have called the police on them and taken a photo of their car with my phone. The fine is pretty hefty in FL, but is used to be much more.
The thing in my side still hurts, but it is not a lymph, so it is either a cyst or tumor. I try to think cyst, but I get them and none of them hurt. I also have developed kidney stones... like my back did not hurt enough already.
I am truly blessed to have the family and support structure that I have. Most in my position would not have the home and now transport that I do. It is so hard to remain positive sometimes, pain is hard on one that way, but I do know it and try to keep it in mind. I am in love with my wife and love my son... but am very lonely for friends. When I got sick, people just kinda' stopped coming over. I know it is hard to see someone in pain, it is uncomfortable, I do not blame them.
Kick back, have some cranberry juice for the stones, and if it won't interact with your meds, add some vodka to it.
Wolf gives good advice as usual. That's a bummer about your friends - but there's a few of us checking up on you here, ya'know :cool: !
Thanks... I will, without the vodka, I don't drink anymore.
Along with the van Just got a gift of a Zen Vision M 30g player... this thing is cool! Still have some to learn on it for the next few days (taking my time).
Amazing to me that this little thing has more memory and capabilities than the pc I had ten years ago. When you have to use a wheelchair to get around a lot, you spend a lot of time waiting.... waiting for people to finish-up in places you can't go, waiting for people to get things that you are shopping for when you cannot get to the items because most places don't put their rows far enough apart for the disabled (I cannot shop at JC Penny and some will not even help me shop, the manager at the one at Eagle Ridge Mall told me that and was pissed that I even asked), waiting for someone to get the car, waiting for meds to kick-in so you can move around safely, bla, bla, blaaaaa...
I had a smaller version, but it was too small for what I wanted it for. Just music is fine, but I wanted it for Buddhist, Quantum Physics and other lectures, MP3 books (just got a bunch of the BBC Holmes stories) and the like, they take-up too much memory for the smaller versions. With the meds I take it has been hard for me to read as much as I used to... my memory is not what it used to be and I tend to lose my place a lot. I can when at home in bed, in a quiet place, but when out, with a lot of distractions... the audio is really awesome! Even photos of my favorite art if I like.
This one can even download video from your television (tivo) or video player... crazy.
Strange how such a small thing can make such a difference in your life.
I keep it in perspective, grasping is suffering, this is just a thing and I only enjoy it for what it is… but it is nice to have and has made things much more comfortable for me… a distraction from the pain while out.
The van is amazing... real freedom in a lot of ways.
Bad time the day before yesterday... day and night in the hospital. Don't know what happened really, probably something to do with my immune system, which is a joke. Could have been a rampant virus or a "bad" pill, which happens.
What do you mean by "bad" pill?
Sometimes you get a pill with too much or too little med in it.
It is a virus my immune system is not dealing with.
:S I hope I don't come across that. Viruses can be mean stuff. I hope you kick it soon. I'm guessing some of your medications suppress the immune system :(
The van is amazing... real freedom in a lot of ways.
Are you finding parking spaces to be big enough to allow you to get out?
I check up on you too Rkzenrage :comfort:
I'm sorry to hear about the mistreatment at Sea World and your hotel. I've never had to experience that exactly, only a fraction of it while pregnant. In any case, I sympathise. If I were in your place, I would take names and kick ass. Seriously. Get the name of the person or place and their supervisor or boss, then write a complaint to the home office. If nothing else, they may be better educated as to how to treat the next handicapped person they encounter. At best, they could be fired. Either way, a complaint would be some small vindication for how they behaved.
How is typing for you? Does it hurt to try to type letters or posts? If so, have you looked into voice recognition or voice integrated word processing software? Just a thought, that while sitting around waiting...and waiting...you could be recording thoughts or letters you could later have transcribed via the software.
The van and the Vision player sound awesome! Good to hear that you are finding things to help keep your days interesting and your activities varied.
Please do keep us updated as to how things are going!
Stormie
Are you finding parking spaces to be big enough to allow you to get out?
When people who can walk are not parked in the loading spaces or people don't park next to me in the loading area... sure.:rolleyes:
My son's school is the worst... I get no space there, they have eight and no one that parks in them is disabled, ever. It is a church.
It does hurt to type, but I'm not ready to give that up yet... I use a number of PCs and like that freedom. Everything hurts anyway, so this is not a big deal.
I'm going back to Sea World... it was weird how bad and constant it was that day. The planets must have been lined-up wrong or something. As for the architecture, that is just fucked, but so are a lot of things. Nothing can be done about that, so I will focus on what I can do something about.
Thanks for checking in.
Still kinda' sick, but slowly getting better. It will take some time.
Glad to hear that things are getting a little better rk. Hope it continues that way.
You might also want to seek out those with M.S. it robs you of your mobility, is more painful then I can imagine and takes your freedom as well. I'm friends with one woman who often doesn't leave her house for months...I've tried but its too hard for her.
I have just joined
www.apparelyzed.com, we will see.
So far they are really nice. Learned something weird today, there are disabled fetishists/lovers called Devotees. Also, Wannabees and Pretenders (one wants to be disabled and tries to get Drs. to harm them and the other pretends to be disabled, they creep me out).
Joined a couple of My Space groups as well. A Buddhist site, couple of pipe sites and disabled sites.
That devotee thing extends even beyond the disabled. A similar thing happens to prison convicts! I suspect some types find comfort in knowing their devotion is unlikely to up and fly to Aruba on a whim. Sounds like the sites will be informative at the very least :)
When my brother was housebound for several years due to illness his computer was his source of entertainment, his means of socialising, his sounding board, his research library, his distraction and his focus. It helped him greatly through a very difficult time, and I hope that your computer can do the same for you, rk.
It's hard to imagine myself in rkzenrage's position...think I would have given up by now. I'm glad he's got that chair to relieve the strain of carrying those large balls around.;)
But trying to imagine being in that position before cable TV, internet, electronic gizmos, broad range of talking books, etc, when the ability to read comfortably slips away....is incomprehensible.
With the pain, it is very hard to read now. My concentration is not what it used to be.
Bad spasms yesterday, tore up some muscle. Sucks, it is really beautiful out now and my son is at the park with my wife.
Still listening rk. Still sending you whatever good vibes I can. Are audio books an option, or has this been discussed before?
I do some, but can't afford or am annoyed by most of the audio book clubs. So, my selections are limited. They are really pricey around here.
I googled online audio books and got, amongst others
http://www.audiobooks.org/... which claims to offer free online audiobooks, plus a number of other paid sites .... Hope this helps (or maybe I'm teaching my grandmother to suck eggs?).
All the best
They are not all free, some are good, checked them out over a year ago. Thanks a lot for the heads-up though.
Ok, I can walk with some help, a cane or walker, for short distances. So, sometimes, I go to a store or my local tobacco lounge without my chair.
Yesterday I went out to a couple of places after leaving my chair at home; I was having a “good day”… I am not now.
The last couple of tests I have gotten back from my Dr. for some of my conditions have not been good. I am getting worse and know it, but have not been acting like it.
The days of going out, or even doing much around here, out of the chair are over.
I knew this day was coming, we have talked about it, my Drs. and I, my wife and I, my parents and I… why do I feel so numb?
I’m not really upset, not in disbelief, but it is all happening much faster than I thought… all of it.
I guess this means I have to deal with other aspects of my illness, things I normally don’t deal with… I’m not sure.
I suppose you feel numb because imagining it, and talking about it, is not the same as having to live it?
I wish you ample fortitude and humour, and the continued love and support of your family and friends, to help you through.
The amount of pain I'm dealing with from it, I'm sure has a lot to do with it.
I'll deal, just like I always have, I'm sure.
Thanks Limey, for your kindness and support.
On-Line pain groups tend to be populated by women with borderline personality disorder and fibromyalgia. They are worse in person.
Hey, I have fibromyalgia, as does my mother, be nice.
Its sad... it seems people for the most part (not this forum, mind) only focus on the physical aspects of a disability, and not the mental issues it can cause... they just don't understand. They also think drugs are somehow miraculous cure alls with no side effects o_O.
My pain is not bad at all (yet) but I can still feel for you, rkzenrage. I worry sometimes about how bad mine will get, but I can't imagine being in a situation like yours.
So you need to be strong for the people who aren't as bad, ok? That way, they know they can make it too. Be an inspiration, I suppose. You know, you could also try to start your own group, find people with similar problems. They might feel just as isolated as you. I guess, though, my only real good advice sounds cheeseball: life is what you make of it. You are going to hurt no matter what you do, it seems, so make the most of it, choose to live a solid, good life and not let the pain control you. Best of luck, and I mean it.
It's not only the physical pain that can be harmful but the effect being in pain has on the mind.
I have not problem, personally, with those with fibro, they just shun me.
They just like to bitch, constantly, about how others don't believe they are sick. Since I don't have that problem, I guess they could care less about all else we have in common. It has happened at every pain group that was a fibro, exhausted disease, in disguise.
The same happens with SCI groups. Since I was born with my problem, I don't spend a lot of time complaining about "the good ol' days", "what if", "why" or any other fixation on the fact that I am sick and I can do nothing about it.... though I have had spinal injuries and they have contributed to my condition and being in the chair.
I complain some, kinda' why this thread is here. But, I also want to talk about chair accessories, canes, cooking, stem cell research, ADA improvements and how we can lobby/get better representation, etc, etc, etc.
Just sitting around and dwelling on being sick and what put you there is really counter-productive. I thought these were support groups?
The pain does do a lot to my concentration, mood, etc... but it has physical manifestations as well.
BTW, my wrist is probably broken, it is certainly badly sprained and I have six kidney stones... happy Halloween.
Do you have a sword cane? Might be just the ticket for prodding assholes.:haha:
I know you said you won't be going out without the chair anymore, but there might be occasions where you are just going to one place and can get comfortable there, then home.
My Mom had trouble with her cane when she started using it full time. She didn't know what to do with it in a restaurant or where ever she was going. Hanging it on the chair back, people would knock it off going by and anywhere else, they can trip over it.
I got her a sectional cane with an elastic cord up the middle. It's called a collapsible cane but that name makes me nervous. She could fold it up and put it out of the way, but still handy. Unlike hinged canes, this has tubular sections and the elastic cord just keeps all the sections in one place when you break it down...very strong and stable.
No, I do not have one. Most of them are not practical...
the one I want is very expensive. I just like it... when I feel I may need something like that, I conceal carry.
I always have a cane for bathrooms that don't fit my chair.
I am patenting a cane holder for wheelchairs. I have a lawyer doing a pre-patent search for it now.
I have a collapsible cane in my car, for just-in-case... thanks so much for your concern and thinking this through for me.
Who cares how much the medical insurance pays for that medical appliance. :lol:
No shit... if only!
Is that not a thing of beauty?
I love knives, especially big ones. I think they are beautiful art... funny though, the ones I like to carry are the little Case knives. Plenty for a pocket knife.
It's not only the physical pain that can be harmful but the effect being in pain has on the mind.
I'll give an Amen to that!
I have the dubious pleasure of being one of those "back problem" people, but that is only one of my incredibly insane list of issues. Like my doctor likes to say, I've got a lot going on, but none of it life-threatening . . . she doesn't add the "yet" yet . . .
While I can't yet totally relate to the intensity, I have days when I'm consumed by the worry of just how bad it will get. I'm just starting to comprehend what it means to have a connective tissue disease . . .
I admit that I want to stop and watch everyone in a motorized chair. Not out of some perverse curiosity, but because I want to know how to do it when I get there. I guess in my mind it's not an "if" but a "when."
You would not believe how triumphant I felt when I did a kiddie amusement park with my kids without my chair. Don't underestimate the level of pain some of "back problem" people deal with. The pain is invisible to all but the closest and I feel like a poser in my chair, but most of the time it is the only way to be able to endure an outing . . .
God, why don't they get this pain thing figured out? It's only science . . .
Edit~okay, so now I have read the whole thread. There's so much here, so much going on, so much to say. I think those of us in advanced levels of pain have a lot to say to the medical community and to the community at large. Why isn't there more talk about it? Not just the bitch sessions, but the real constructive nuts and bolts and dynamics of pain itself. Sure we can spend our entire waking life focusing on our health, on the foods, on the exercise, on the mental and self-healing, but that seems almost narcissitic to me.
There's more to pain than the living with it, enduring it, accepting it. I get a little consumed by it. I want to talk about it ad nauseum. There are so many different types of pain that come from different places ~ there are a lot of nuances and the doctors just don't get it.
I think a lot of friends disappear because they just don't know how to act, what to say, what is needed, what helps, what is invasive or offensive. I go to a place to assemble meals for the month (they go home, to the freezer, and I have food for a month) with another friend in chronic pain. We chuckle because we are both too young to be in this situation and we call ourselves the disabled brigade. The staff are sweet and help us out as much as they can . . . it helps having the company. I get too tired of asking for help when I'm by myself. With the two of us the staff are more attentive. It's nice.
It seems like people get embarrassed asking about what's going on with the all the medical issues. There are too many and they don't really understand all the complexities. They really only want the bottom line and I don't blame them, but since it is my life (and yours), I do want to focus on the intricacies of it all.
It is good to talk ~ not just to vent, but to compare notes, see what crops up. It has been good reading this thread and learn that I'm not the only one who has trouble with the pain meds . . . if I'm not the only one, then why won't the doc listen???? It drives me nuts. Worse than the rude people . . .
*Sends loving and healing energy to you*
I am sorry you are going through this & will reply more to your post. It is great to have you here to talk with. Not that it is great that you are in pain... nope, nope.
BTW, it is a bad sprain, not a break or fracture.
We have a lot of the opposite problems... it will be interesting to discuss it. But, I have to go vote in a few.
The Drs. don't address it more, IMO, because it is not fully understood. I am very fortunate to have a great osteopath/Gen. Prac. who is very up-front about the stuff he/ & the rest don't have down. He is a great Dr. & friend.
You know, I just keep thinking of all the great advances that have been made, things like MRIs and new types of CAT scans and whatnot, so why the heck can't they take a good look at the nerves and figure out how to calm them down, or at least figure out some better ways to block the signals?
I got so frustrated with my visit to pain management. My primary basically said, I told you not to go.
All PM told me was: sleep on the floor because harder is better and forget surgery because they never really know where the pain is coming from no matter what the MRI says.
Gee, thanks guys.
I seriously do not know how you have endured. Well, I imagine it is pure grit and determination. Between the appointments and disrupted life and limitations and pain, it leaves little room for anything else.
But then I have my kids to keep things in perspective, like my 7 year old shooting my 3 year old in the eye with a nerf dart. I was so pissed. We had just been playing, supervised, and the damn guns had been put away, I turn around to answer the phone and SHRIEK! So, I bandanged 7 year olds eyes so he had to be blind for a day . . .
It has been a long road... I am on my fourth pain Dr. (& he is no winner).
But, my (immediate) family is very supportive & I have a great GP. Makes all the difference. You hang in there and keep looking.
My three year old jumped off the bead onto his head, onto tile yesterday... visions of brain damage (not that he does not have that as a three-year-old boy already). He is as ok as he can be. I hate not being the one to pick him up.
The other night when I was perusing instead of sleeping, I came across this site on pain:
http://www.jr2.ox.ac.uk/bandolier/booth/painpag/index2.html
The really sad thing is that when they talk about a painkiller being effective, the benchmark is 50% pain reduction. So, if we are in blinding pain, I guess that takes us down to barely tolerable pain?
Gee, watch me jump for joy :P
Still, it was interesting reading, especially when it gets into how to read statistics and discovering that gee, the reason why pain blocks don't work on most people is because they really just don't work on most people.
I cancelled my pain block appointment. With the luck I've had with medical treatment, I'd probably have an allergic reaction to the durn stuff.
Now all I have to do is convince my Primary that I really am having reactions to my pain meds and to convince her to try something else. The Oxford site explained just why I am reacting and what is going on, so at least I know it is not my imagination!
But, weirdly, the Chinese herbs I'm taking, stuff I can't even pronounce, seems to be doing the most good of anything I've tried in the last two years.
And I'm not even taking it for my back! Strangely, it has gotten me to the point of actually being able to drive this week. That is a HUGE triumph for me.
You are lucky that your family is so supportive. That makes a big difference. Plus having a great GP. I didn't know there were any out there.
Now, rumors have it that our insurance is changing, so who knows how that will affect everything . . .
You think the things a 3 year old does is scary, wait until he is 7! My crazy son keeps trying to jump from higher and higher structures. I'm just waiting for one of those bones to go *snap*. Somedays I think he is an Evil Kneivil (?) in the making.
I hear you... it is starting with Finn already.
I know I will never be pain free. I never have been, so I have a very different outlook on my pain management than most patients. My Drs. find it refreshing, so they tell me.
I will not, cannot, drive. The risk of my having a spasm and harming someone else is too high... one I will not take. Between the meds I take, the feeling lost in my legs, the lack of sleep and the spasms... just no.
Not my right to do that. I see people like me at the Dr. who have driven themselves and wonder how they can bring themselves to take the chance... what are they thinking?... just can't fathom it.
As for my family, supportive-vs-controlling, flip a coin.
I...
As for my family, supportive-vs-controlling, flip a coin.
But they
are two sides of the same coin. My mother needs my increasing support, I want to offer support, she sees some of that as control, I don't want to take control, but I do want to offer support :sniff: . It's hard on both sides of the fence, as I'm sure you know, rk.
I don't know man... I can support my mom without telling her what to do, how to do it and when to.
I don't know man... I can support my mom without telling her what to do, how to do it and when to.
I've been thinking about this ... isn't it a "support ... control" continuum, with the parties involved almost inevitably having different views on where the switch happens?
Imagine this series of scenarios:
A person who is incontinent, and unaware of the fact that they are sitting in soiled clothes
A person who hasn't washed for weeks and smells of BO
A person who says they haven't washed their hair for years but you wouldn't know if they hadn't said
A person who doesn't take a shower as often as you do
There is, isn't there, a point where any one of us would step in and tell this person (let's assume we care about this person) to wash more often? But I expect the point varies for each of us, as it would if we were the person described above.
Is it the triple "advice" that bugs you, rk, "
what to do,
how to do it and
when to"? Can you ask her to tone it down a little? I'd like some pointers, as I know I can come over bossy and that's not how I mean stuff at all :( .
I have no problem with comments on how I smell when I do... though it is embarrassing when I cannot shower by myself. If I smell it is a fact, as long as it is done with compassion I am ok with it "do you need help bathing? I will help you." is fine. Just telling me I smell is not... that is just cruelty for cruelty sake to make one feel better about themselves at another's expense. I know when I smell, I am not an idiot.
This is not the kind of stuff I am talking about. It is hard to explain. It is micro-managing our lives, trying to butt-into things that have nothing to do with my illness or things that I have a handle on, but she just does not like how I handle them.
I am a very different person than she is, she has a hard time with that... often. For some reason she takes it personally... it makes no damn sense.
They think my wrist may be a torn tendon now... I wonder what the next guess will be?
Getting a bit worried about these five kidney stones. I have not started to pass them yet. I do not want them to get too large to do so.
I know I will never be pain free.
Five years ago I thought that's how it would be for me for the rest of my life. At the beginning of this year, when the pain escalated, I questioned how I could continue to function this way.
But now that it is easing I'm actually more anxious about it.
In that state of constant, intense pain, it becomes such a reality it is the lens through which I saw the world. Now my world has changed . . . again.
In your shoes, I would be reading that and saying "yeah, but give me that change, I'll take it!" I wish I could. I wish whatever miraculous (or not) thing that is going in me could be duplicated.
If I were rich, I would dump tons of money into research of the nervous system, how pain works, etc. Oh how I love to rant about the medical system . . .
As for my family, supportive-vs-controlling, flip a coin.
That's a toughie, all right. But you know, I tell my husband all the time that I don't like how he does things and there is nothing wrong with him! :dedhorse:
It is hard to live in close proximity and not see that someone could be doing something differently, better, more efficiently . . .
We've practiced so much open communication in our relationship and when we've talked it all out and all is said and done, it gets back to square one: what do I want him to do? Hell, I don't know! I just want it to feel right!
Mars & Venus... we function very differently. As long as it does not directly affect my life or something I do on a regular basis I could care less what she does or how she does it.
Guys don't worry about how it feels, we worry about how it works.
Guys don't worry about how it feels, we worry about how it works.
Or doesn't, as the case may be . . .
rk, I hope my last post didn't seem tactless to you, I was not thinking of you in your situation when I put up those examples, but more of myself as someone wishing to offer support without being controlling: and perhaps that focus made me tactless - if so, I'm sorry for that.
I am grappling with support issues respecting my mother and will, I think, start another thread about that, rather than hijack yours ... but I'd be grateful for your input if/when you feel like it (obviously).
Meanwhile, I'm still sending you positive stuff from across the briney ...
I've been away for a bit - but you don't seem to have posted much recently either rk - are you all right?
I have been out of town. I just got back and have not been feeling well. The trip was very hard on me. I had a pretty bad "spell" the other day (the majority of the trip went pretty well, traveling is hard on me).
Also had a bit of a scare when we discovered what we thought was a hernia after a night of some spasms. Found out today it is another cyst that is under a vein, so it looks, & feels, bad; as well as, just right.
Thanks for asking.
Your post did not seem tactless, just direct. Mine are often confused for the former as well.
I thought I did address it. Perhaps not well enough... something specific I missed that you want me to discuss?
Based on what I've read in another thread I would really like to see this one gone. How can I get that done?
Private message me with a reason compelling enough to warrant its removal. Keep in mind that many others have contributed to it.
Can't it be closed to further posts without being unavailable to read?:question:
rkzenrage, if it's become a burden to check and reply, just post that you won't in the future. People wanting to post will do so with that caveat, if they wish.
I don't know what to do...
This used to be my place to "vent" when things got bad.
But now I feel like no one trusts me...
Things are bad.
Why do you feel like that rkz? I haven't noticed people treating you differently. I have noticed that you haven't been posting much lately.
Been busy over christmas and new year?
I have not been well. My condition is worsening & some of the things I have been dealing with are still wrong. My wrist is still broken and I still have five kidney stones. I'm having to change pain Dr.s again... my mobility is crap, it is a long list.
You must not have been there for the grilling I got.
Edit:
The holidays were horrible, I spend most of it in bed alone.
I've had grillings of my own. ;)
Sorry you had depressing holidays. Sorry for not knowing this, but are you married?
It was for the best. My son is three-&-1/2 and I told them to leave me. He knows that I am sick, but on days like that, he does not need to see me, just sucks it happened to be on Christmas. I had a couple of good hours in the morning, but I fucked-up and helped her put his kitchen together the night before, plus a front moved in that day and hammered me (the latter being 80% of it). A week of really bad times followed.
My wife is starting her own office with a new ins company and has less time with me. I am happy for her, but miss her a lot, especially since there are a lot of things I can't do for myself any more, some that I have not told her about. I am not eating much some days. My last tests came back very dehydrated and my family freaked... my fault for not speaking-up but she has so much to do...
I just had a surgical procedure yesterday and I have to spend all day in the hospital, perhaps two on Fri, with only a small meal before 9am and nothing but clear liquids until 11am (nothing after that) for extensive tests. They are going to hurt like something that many/perhaps most of you will never know, thank goodness.
You never know if they are for me or for them to write some damn paper or just for their curiosity.
I'm probably going to have to have these stones cut out, which is very scary with my immune system... keep in mind, my wrist has been broken/or a torn ligament/tendon, they don't really know since October. I suck at healing.
Finally, my pain level is through the roof and it affects everything... I have not been able to hang-out with any of my friends for ages. I spend all my time alone in this bed in more pain every day.
Good times.
One cool thing, my son is awesome, every day is a gift that I get to see him for just a few moments. It is all that keeps me alive.
I wanted to ask why your wife wasn't with you, but wasn't sure how to, so thanks for making it a bit easier on me.
Kids are great for making us see the best in life. I can't imagine spending an hour in your shoes, let alone living your life, but it is a blessing that you have your son, so it's wonderful that you still have that perspective.
Maybe after your wife gets settled into her new office things will be a bit easier on you both? I know I don't know her, but I suspect she'd want to know if you needed her more. If she finds out later that you did, but failed to tell her, she'll have a burden of guilt to carry (if she's anything like most of the good wives I know) as well as all the other emotions she undoubtedly feels for you.
Just tell me if I'm speaking out of turn. I'm not trying to be nosey. Just trying to talk.
Not at all, it helps...
She just has so much, you know?
& there is really no helping me.
Edit:
BTW, just to clarify, because I'm sure someone wants to know.
The reason they don't know about my wrist is because there are issues with my bones with the osteo, so they can't tell with that. Due to all the inflammation, no soft tissue issues are going to show on an X-Ray on me.
I have a spinal cord stimulator (pacemaker) implant, so I can't have an MRI any longer.
I do understand you trying to protect her, and I'm sure she amazes you every day with her comapssion. I'd also be willing to lay money on the fact that she's still got much more to give you.
rk, I had wondered why you wanted to lose this thread a while back -I am sorry that you've been cross-questioned somewhere at the cellar so much that you don't feel trusted here. I always look out for your posts and read them with sympathy, wishing I could help more.
I'm with Aliantha on keeping your wife informed - I appreciate you trying to shield her, too, but I'm sure, from what you've said, she'd rather know and be able to help you.
Wishing you courage, patience and the continued love and support of your family.
RK, about 4 years ago my brother fell from a 5 story building landing on his feet. He shattered his knee caps and his ankle bones. The doctors put metal bullits through his skin into his lower leg bones and some kind of weird metal shoes that kept his feet from actually bearing weight. He was a heavy man. Last year he had his stomach stapled so he could bear weight on his legs withough so much pain. He had tried martial arts but with out the ability to work up cardio the weight was hard to take off. He is in pain alot but never complains. He sucks it up every day so I never mean to be hard or callous. Just know that I understand your pain more than you could have ever imagined.
I can't speak for others but I'm certainly not trying to question what you're going through. Needless to say it's hard to see a good person in pain without trying to help. My questions are to those ends. Tact is a hard thing to convey over the net - please sprinkle it liberally over anything I say. There is pain and then there is PAIN. They should invent a new word for what you're going through.
Is lithotripsy an option for your kidney stones?
Funny, they have never mentioned that, but with the state of my bones it does not surprise me. It would probably cause more harm than do good.
There has been recent talk of surgery and that is it.
I can't be on the PC for long now. I'm not supposed to be on it at all. I'm supposed to be still for the next two days or I can leak spinal fluid, but I wanted you guys to know that the tests, though no damn fun, did not do more damage.
I appreciate all of your kindness and putting up with all of my BS.
I'm really not a whiner and have a very decent attitude about all of this... just, these last few weeks have been a bit... much.
After the milogram I think my wife has an idea of how serious things are getting. I hate this.
She got all nervous because she knew I was not telling the nurses how much pain I was in so they would let me go home and they were very freaked out because the morphine they gave me did not work.
It was funny when one nurse brought a friend to look at me like a side-show attraction, "see, I told you, he's up, awake, talking and everything!"
At that point it kinda' hit home for her what my pain levels were & how long I have been dealing with them. I wish I had not been there to see it on her face.
Not sure how new or tested lithotripsy is. There can be all kinds of reasons a doc doesn't mention something. Can't hurt to ask I suppose. You wouldn't think something aimed at your organs would affect the bone but I'm no doc.
Do you ever get the docs that openly exclaim "We've never seen that before!" right in front of you? That's a heart-warming experience too.
Is it because you've had so much morphine in your time you're rather immune to it? Or is the pain that great? Both?
Sorry I can't really do anything helpful, RK, but I so wish I could. Don't ever feel that telling us how it is, is whining. Whining is when I tell you about how much my bruised knee hurts where I fell over ice skating. Feel free to bitch-slap me if I ever do.
Not sure how new or tested lithotripsy is. There can be all kinds of reasons a doc doesn't mention something. Can't hurt to ask I suppose. You wouldn't think something aimed at your organs would affect the bone but I'm no doc.
Do you ever get the docs that openly exclaim "We've never seen that before!" right in front of you? That's a heart-warming experience too.
Is it because you've had so much morphine in your time you're rather immune to it? Or is the pain that great? Both?
Every new Dr. does that with me... it gets old.
It is because I am in so much pain and because of a genetic tic that causes me to metabolize it quickly... mostly because of the amount of pain I am in and how long I have been in this much pain. It takes a lot to touch it.
I am also one of those who opiates makes very hyper for a time.
I did ask about "sound waves" during my last visit (did not know the tech name)... he just gave me a dirty look.
Just assumed it was because of my osteo problem.
Well crumbs, as if the pain wasn't bad enough? Do you have cannabis scripts in FL?
It's amazing how far medicine has come but very infuriating it hasn't come farther.
Nope, and the penalties for my using it are very high. It helps with spasms and with nausea better than anything far more than any med I have tried. I try not to use it or keep it in the house though, fear for my family.
I don't know what to do...
This used to be my place to "vent" when things got bad.
But now I feel like no one trusts me...
Things are bad.
Vent away. It's the internet, nobody is trusted by everyone. Some people seem to be negative about everything and everyone that posts. Fuck 'em. Do whatever is comfortable and don't worry about it, there's plenty of people who are interested and care, even if they don't comment. :thumb2:
Nope, and the penalties for my using it are very high. It helps with spasms and with nausea better than anything far more than any med I have tried. I try not to use it or keep it in the house though, fear for my family.
Those penalties piss me off severely. I'd like to see the politician who would
deny you any medication that works so they could be smacked even more senseless than they already are.
California is pretty good about it. Unless you get a total dick cop they don't care or confiscate what you have. Much worse are the feds who come in and handcuff people in wheel chairs (I'm not kidding) who are buying at clubs.
Been in the hospital since Wed. Kinda' complicated, tired now and don't really want to talk too much about it.
Doing better now. I'll tell you more about it soon.
Sorry to here than, dude.
The whole kidney stone "issue" is a lot more complicated now.
Involving my bladder, problems with the nerves and all the damage with my back and some of my other pre-existing conditions.
I just spent half a week in the HP with a stone lodged with a bladder infection.
Still have six stones, on both sides now, and I may be having long-term issues with muscular control... all of this is VERY aggravated by my immune system being suppressed. It took six IVs of antibiotics to get it under control. I'm still taking oral antibiotics.
I really don't want to get a Candida infection. I need to read-up on how to avoid that.
The bed was awful and, in the end, the reason I am not still there now. It caused my hips to hurt so badly I could not stay still and they were going to have to medicate me more than they/or I liked.
Just trying to rest now and get this pain under control. If I could just find one damn comfortable (it's relative) position!
So, I spared you all the gory details... and trust me... there are some. In return:
Thanks for letting me rant.
For places that're supposed to make you feel better and cared for, hospitals can sure be amazingly uncomfortable and oppressive at times. I hope you find some ease for your pain, and we're always here to listen.
Glad to hear you're back in your own bed at least!
Just trying to rest. Not easy though.
You are right about the bed!
BTW, I cannot tell you all how much you, and this site, helps me with my pain.
It takes me "outside" of myself.
It helps a lot with the loneliness too.
(Sorry for the double-post, but this was entirely different than the last post)
Thank you all, and yes, I mean ALL of you.
Those beds can make anybody feel worse after a few days :S Would they allow you to bring one of those eggshell layers in? I had to do that at one place.
I will next time, thanks for the advice.
The bed helps.
My Dr. is referring me to Shands, but I have already been told that they are really only going to be looking at pain management. They know they can't help me, but we will see. I'm sure tests will be run, perhaps someone will find something helpful.
I interviewed another pain Dr recently. He actually turned me down as a patient, stating that he could not help me and that I needed more than he was used to doing for his patients. He suggested Shands also.
Hard to hear from a pain specialist.
I've been wanting to make some YouTube videos and start back to working in wood. I can't until someone helps me set my shop back up and my video equipment in my office.
The people in my life are very busy and sometimes can't do these things when I can or I am too ill to be there when they are available (this happened once). This is very frustrating and becoming more so as I become more and more dependent on others as I can do less and less for myself.
I had to get rid of all my plants and gave my mother all of my sushi making materials last night.
There are very dark thoughts... and I want a drink.
There are very dark thoughts... and I want a drink.
Why do you want a drink? Will it make you feel better?
Alcohol is a pain-killer. If it will make you feel better, is there no way you can have a drink or limited amount of drinks without permanent psychological or physical damage? When things get so bad, why can't you have a couple? will they react with medication? Will you lose psychological control? What?
-I'm not judging, please believe me. I remember that you have posted about problems with alcohol, but I just wonder is it necessary to be absolutely teetotal? I have problems with painkillers -many react with my asthma meds and those left often don't work. baby pain compared with yours, but when I don't have to drive, operate machiney, watch the sprogs, a few beers work a treat -the pain is numbed a bit, and I don't care so much about what remains.
I used to work with a neuropsychologist who looked at the permanent effects of prescription painkillers on the brain. They sure work faster than alcohol!
The feeling is mutual. For a while, being the crazy cat (rodent, this building won't allow cats) lady worked for me. Then I got sick of it, because it's not me. I'm trying the naturopathic approach, seeing as nothing else has worked, and attempting the "Anti-Candida" diet. It's not easy to prepare the foods I'm allowed, or even remember. Plus there are supplements; it's almost not worth it. It's been four years, and my free-spirit, do-it-all personality is not faring well. Everything hurts, even my Sealy Posturepedic. I've tried alcohol, and even that doesn't help after a while, and leads to other problems to compound those you've already got. Not to mention I've developed an allergy. The best option I can think of is to ask my doctor about a morphine patch, perhaps get a new bed. I've become somewhat of a home-remedy expert, if I knew your symptoms, I may be able to offer some ideas. The things that work for most people haven't for me, but that doesn't mean they won't for you. Let's hope. *crosses fingers*
Best wishes.
I can't take too much morphine, I'm one of those who cannot sleep when I take it. It makes me hyper and
very aggressive.
~Standard- Wrong with Rob?
I have a very rare (there is no name for it, I may be the only one) genetic degenerative bone/hormone/connective tissue/nerve disease that I was born with. Different aspects are being diagnosed constantly.
The best way to think of it, as the individual symptoms were diagnosed through my life from about 13 on; it is like having osteoporosis, arthritis, facets (spine collapsing on largest nerves), compressed/fractured/slipped/herniated discs, immune deficiency, & tendonitis all at the same time.
I have a birth defect of my lower spine, spinal cord and epidural space that encourages a lot of these problems.
My spine is 1/2 the size it should be on the bottom half and I have almost no epidural space.
Due to the spinal issues, arthritis and connective tissue problems I am very sensitive to weather/barometer changes.
The illness has recently been affecting my liver & kidneys, there are varying theories as to why, I don't really discuss that very much.
There is no cure and they cannot slow it down, though they have been trying.
The surgeries that I have had are many, removing parts of my spine, work on my sciatic nerve & have implanted a pacemaker into my back with leads that go into my spine to send electric shocks to confuses a percentage of the pain signal to my brain (only from my legs, but better than none at all).
I do, however, have more blessings than curses in my life.
This pain, though constant and somewhat extreme, is nothing compared to what I see people do to themselves and to each other.
I have a loving family, shelter and food; I did not always have any or all of these things at times in my life.
I am rich and loved beyond my wildest dreams, we all have our stuff and I would not trade my with another's; waste no pity on me.
Namaste'
Robert
Why do you want a drink? Will it make you feel better?
Alcohol is a pain-killer. If it will make you feel better, is there no way you can have a drink or limited amount of drinks without permanent psychological or physical damage? When things get so bad, why can't you have a couple? will they react with medication? Will you lose psychological control? What?
-I'm not judging, please believe me. I remember that you have posted about problems with alcohol, but I just wonder is it necessary to be absolutely teetotal? I have problems with painkillers -many react with my asthma meds and those left often don't work. baby pain compared with yours, but when I don't have to drive, operate machiney, watch the sprogs, a few beers work a treat -the pain is numbed a bit, and I don't care so much about what remains.
I used to work with a neuropsychologist who looked at the permanent effects of prescription painkillers on the brain. They sure work faster than alcohol!
I would drink to help with pain, but it is very temporary, I would hurt far more the next day.
It is bad with my meds and my liver does not function properly.
It would hasten my demise and make my current depression far worse.
Have you tried an alternating pressure air mattress? (For those who don't know, this has a pump which fills and empties different cells in the mattress constantly.) We got one for my mother when she was ill, and it seemed to help quite a bit, as she was pretty much bedridden for a while.
Just a thought, best wishes goin' your way.
I can't take too much morphine, I'm one of those who cannot sleep when I take it. It makes me hyper and very aggressive.
Have you tired a Fentanyl patch? Many doctors are reluctant to perscribe them mostly because of bad press. You need to find an Anesthesiologist Pain Specialist if you have not tried one already. A good one will do wonders for you ADL and pain management will be the key to a happier or at least a more bearable future.
"I have a very rare (there is no name for it, I may be the only one) genetic degenerative bone/hormone/connective tissue/nerve disease that I was born with. Different aspects are being diagnosed constantly.
The best way to think of it, as the individual symptoms were diagnosed through my life from about 13 on; it is like having osteoporosis, arthritis, facets (spine collapsing on largest nerves), compressed/fractured/slipped/herniated discs, immune deficiency, & tendonitis all at the same time.
I have a birth defect of my lower spine, spinal cord and epidural space that encourages a lot of these problems.
My spine is 1/2 the size it should be on the bottom half and I have almost no epidural space.
Due to the spinal issues, arthritis and connective tissue problems I am very sensitive to weather/barometer changes.
The illness has recently been affecting my liver & kidneys, there are varying theories as to why, I don't really discuss that very much.
There is no cure and they cannot slow it down, though they have been trying.
The surgeries that I have had are many, removing parts of my spine, work on my sciatic nerve & have implanted a pacemaker into my back with leads that go into my spine to send electric shocks to confuses a percentage of the pain signal to my brain (only from my legs, but better than none at all).
I do, however, have more blessings than curses in my life.
This pain, though constant and somewhat extreme, is nothing compared to what I see people do to themselves and to each other.
I have a loving family, shelter and food; I did not always have any or all of these things at times in my life.
I am rich and loved beyond my wildest dreams, we all have our stuff and I would not trade my with another's; waste no pity on me.
Namaste'
Robert "
I understand better. Namaste to you.
Have you tried an alternating pressure air mattress? (For those who don't know, this has a pump which fills and empties different cells in the mattress constantly.) We got one for my mother when she was ill, and it seemed to help quite a bit, as she was pretty much bedridden for a while.
Just a thought, best wishes goin' your way.
I have the foam mattress, it works very well.
Have you tired a Fentanyl patch? Many doctors are reluctant to perscribe them mostly because of bad press. You need to find an Anesthesiologist Pain Specialist if you have not tried one already. A good one will do wonders for you ADL and pain management will be the key to a happier or at least a more bearable future.
I can't sleep with morphine. I am in the minority that it makes very hyper and aggressive. I take some opiate meds, but only early in the day.
I can't sleep with morphine. I am in the minority that it makes very hyper and aggressive. I take some opiate meds, but only early in the day.
Fentanyl is a completely different med from Morphine. Almost no one is allergic to it. It has equipotent equivalent of about 100 times morphine. It is wholely synthetic. You really need to check this out.
Check out these links.
http://www.webmd.com/search/search_results/default.aspx?query=Fentanyl+PatchI don't remember how much fentanyl I was on, but it didn't help much beyond minor aches and pains. The thought of slapping multiple patches on did occurre to me until the nurse said it can make you very ill. I never even finished them all; the adhesive nuisance was worse than the minimal pain relief.
I don't remember how much fentanyl I was on, but it didn't help much beyond minor aches and pains. The thought of slapping multiple patches on did occurre to me until the nurse said it can make you very ill. I never even finished them all; the adhesive nuisance was worse than the minimal pain relief.
You may have just been on the wrong dose. I have some friends with chronic intractable pain and they work very well, if you can get someone to perscirbe them for you.
Patches are available that deliver 25 micrograms (mcg), 50 mcg, 75 mcg, and 100 mcg per hour
Fentanyl is a completely different med from Morphine. Almost no one is allergic to it. It has equipotent equivalent of about 100 times morphine. It is wholely synthetic. You really need to check this out.
Check out these links.
http://www.webmd.com/search/search_results/default.aspx?query=Fentanyl+Patch
I've been on the patch, I had a very BAD reaction. I'm not allergic, just can't sleep and it affects my mood
drastically.
I don't even remember the last few days & it burned my skin pretty badly. It helped with the pain though.
Busted rib...
Don't know if I pulled it away from the connective tissue, tore a tendon or fractured it... but I am not doing so hot on my left side.
Just putting my socks and shoes on, not the first time I have hurt myself doing that, particular, chore either.
Kinda' pathetic when one has to think of something so trivial as a chore.
It is in the middle of my back and swelling a lot now. My son wanted me to play with him today and I could not... not even the little things I can do normally. I am VERY depressed right now. It has been a tough week and this was the last fucking thing I needed.
I had a surgical procedure earlier in the week, not a fun one... I won't go into it now.
Bitch done.
Edit:
On a good note, we had some friends over for a very fun time today, even though I was grounded in my chair and getting worse the whole time. Went to a park and had an egg ... they called it a hunt, more of a scary-ass-free-for-all. But, my son loves animals and there were some of his favorites. Strange thing happened. The people who had the insect and reptile tables did not know about the stuff they were showing, I guess they just worked for the city.
As I was describing things for my son (he was standing on my batteries and I was slowing moving along so he could see into the glass cases of bugs and jars of dead snakes, etc) kids and adults started following us and asking questions. Finn was even answering some, my son is three. Finally the lady sitting at the table asked if I was a scientist.
Seriously, I was not giving latin names or anything like that.
I just grew-up here and know about the flora and fauna of the area, normal stuff.
Finn and I were just doing son and dad stuff, I was not projecting or anything... it was very strange.
The really weird thing about it was, being that my rib is swelling and I'm talking and trying to control my chair with my right hand, watch Finn (so he does not fall or grab something) and try to move as little as possible (those of you who have had a busted/bruised/torn rib issue know what I mean by that) and breath as shallowly as possible...
I did not notice what was happening until, about, the third or fourth question.
Then, it was too late, we were in the "group" and there was nothing to do but go with the flow until the tables ended....
I am not fond of being trapped, though I did not feel threatened or anything like that... just surprised a bit, and very hemmed-in.
After the insane grab for eggs... perhaps I'll write about that later, but this hurts like hell.
We went home with our friends (they have two kids), colored eggs... I instructed from the couch... and was VERY good!
Not one peep about how the church stole all the good pagan holidays and that this is a great sex holiday we should be really celibrating... but I was THINKIN' IT!... They know, anyway. Not in front of the kids... until they are five...[SIZE="2"]ish[/SIZE]
My wife hid the eggs while I lorded over the island of Sodor and slowly realized that I had not just "twinged" something in my side, that I had, indeed, fucked-up again, and pondered on how long I could get away with not telling Kan when she came in and asked me why I was hurting so badly.:eyebrow:
Kids hunted eggs, found small gifts that they treated like free cars (hell, some were), they ate and griped at me for not eating, then for being too sick to eat, then apologized for saying that, then asked how they could help, then asked how one breaks a rib putting on a shoe, gets confused by the answer and agrees to drop it. Everyone is very tired and I am content that I have had friends over for the first time in a very long time...
...
...Then Kan starts to feel bad, very bad, I get up and try to help her, start to swell, she gets mad, takes a bath, has a high fever, calls the Dr. but then won't go to the emergency room when he tells her to.
Dad comes and gets my son, and here I am, in bed with a lap-top... the lady at the emergency room thinks I should come in and get an x-ray, but I don't want to leave my wife.
Lot of ups and downs.
May seem mundane to you guys, but for a guy who spends a lot of his life unable to get out of bed, an eventful day with a lot of ramifications.
The theatrical training is paying off.
I still don't get that.
Also, if you dislike me so much, why are you in this thread?
I still don't get that.
I'm talking and trying to control my chair with my right hand, watch Finn (so he does not fall or grab something) and try to move as little as possible (those of you who have had a busted/bruised/torn rib issue know what I mean by that) and breath as shallowly as possible...
Acting normal.
why are you in this thread?
Yes, acting normal so I don't upset my son who sees his father in pain every day, but does get upset on days where it is worse than others...
Especially when he gets to go out with his dad and play with other kids with me with him.
He knows if I start to hurt badly it is a sign we may have to go very quickly and it will ruin his day because he will worry the whole time that we are about to leave. So I try to hide it from him, and I am very shy about being in pain in public as well because I hate pity.
You are a dick.
You go ahead and post in here, this thread is done for me and I am fairly sure you have had your way as far as what you really want, me out of the Cellar.
You may now celebrate.
You're being a little bitch, chasing me around like a kid annoyed me off the board.
[HTML]this thread is done for me [/HTML] Again?
I'm a dick, huh? Your questioning what I'm doing in a thread, so I give you one of your own thread bombs you find so funny, instead of telling you the fuck off....and I'm a dick. Please don't eat me.
rk, you need to know that you're the one being a dick. With his "theatrical ability" comment, xoB was complimenting you on your ability to remain steadfast to your son and others.
In your pain, I'm guessing you are a little unfocused and not parsing everything carefully. You need to know that people are giving you some slack on this already, and avoid striking out at people. It will not help you, nor will it help anyone, for your pain to turn into getting randomly pissed at others trying to compliment you.
He has already used acting as an insult.
It is clear how he feels about those in my profession and me, personally.
Bullshit, I've got nothing against anyone because they happen to be in any of your former professions. I said your schooling in theater doesn't equip you to be an expert on theology, and seminary prep turned theater prep is moot.
I also said your theatrical training has helped you try to create the illusion that religion is oppressing you. Claims like you couldn't hold office in what was it 14?..17?.. whatever states, because your not a Christian. That's nothing but theatrics and absolutely untrue..... but you knew that.
You seem to think I hate you. Quite the opposite, I pity you.
I have studied religion and theology for over twenty years as a personal hobby since leaving formal study.
I have had professors, ministers and reverends ask my help with research on many occasions. I teach adjunct modules at the local community college on the Bon and Buddhist history of Tibet and how it relates to Christianity for a professor that is more than capable, but he feels I am more informed than he for the question and answer sessions.
Writing is, in no way, covered in theatrical training.
What you read into my posts about you is irrelevant, I don't care what you feel or think about me. Your little crusade of following me around is sad and makes no sense.
Running to the library and sharpening pencils doesn't make you and expert, even if you read over their shoulder. With all this expertise, why would you resort to broad brush condemnations and complete fabrications.
Community colleges will take anybody that will work cheap, especially on filler subjects that nobody cares about. Went to college? Well then you can teach third world religions, who's going to know the difference
You should really see a shrink about your persecution complex, you're becoming irrational .... pity.
Of course... you are right. Must be, those colleges suck, you have great evidence & you have so much invested in it, you have to be. Have a good time with that.
LOL!
Funny how you take this attitude with two disabled people in a row... you are not the first I've come across who we remind of their mortality.
[youtube]YZOHOrNITbU[/youtube]
http://www.youtube.com/watch?v=qvUXbx6pygkDisabled? Who's disabled?
I don't know the whole back story but I didn't parse Bruce's initial comment correctly. AFAIK I'm not in pain either. rk has admitted (multiple times I believe) that he has trouble with tone online.. why leave a short unclear comment like that in his thread to vent? If you have a problem with him there are lots of other places to duke it out.
He is a stalker, the idea is to remove any positive aspects this site and this thread may bring to me.
Get over yourself. I made the comment that your theatrical training was helpful, in response to your having to fake having no problems for the kids and you questioned my right to be in your thread. You know better than that.
That is not what I am talking about and you know it. That has nothing to do with you stalking me though the site and refusing to leave the one refuge that I had to discuss my disability and seek help about it anonymously now that I can no longer afford counseling.
All you wanted, want, is to cause someone pain.
I asked you to leave, you would not... becuse what you wanted was to hurt and nothing more.
Just like you did with the last disabled person who was in the site.
You are able bigoted.
You lie. Show me where you asked me to leave this thread.
Since when is a thread on a BBS you're personal refuge? Get real.
This is the second time you've accused me of picking on some other disabled person, but still haven't told me who the fuck that was. You're making that shit up.
If you can type, disability doesn't enter into being here at all. Stop whining.
Yeah. Ok. I'm lying. It didn't happen. She didn't exist. You don't stalk. Sure, fine.
You keep that bubble complete there kiddo'.
I still don't get that.
Also, if you dislike me so much, why are you in this thread?
Then your post 201 was
very charming.... as you always are.
I still don't get that.
[QUOTE]Quote:
I'm talking and trying to control my chair with my right hand, watch Finn (so he does not fall or grab something) and try to move as little as possible (those of you who have had a busted/bruised/torn rib issue know what I mean by that) and breath as shallowly as possible...
Acting normal.
Quote:
why are you in this thread?
[/QUOTE]
You just don't want people enjoying themselves and anytime you see it you do all you can to stop it.
You are miserable and do all you can to spread that to others.
There was nothing insulting about what xoB said in 201. It was just an ordinary comment, in fact a compliment.
I don't know who the other disabled person is.
Far too sensitive, rk.
I agree. He was commenting that your theatrical training was helping you to act normally in front of your kid, despite your pain. How is that bad? Or stalking? Or able-bigoted? It's a compliment on your acting ability. To my mind you owe Bruce an apology, but heck, what does my opinion matter?
I'm sure it matters to you monster.
rkz...I'm guessing you're not coping too well lately. I hope things pick up for you. It's a shame to see you lose your tolerance.
I have no one to talk to. Our insurance has changed and I cannot go to therapy any longer. We cannot afford it. This used to be my refuge until it was taken from me.
I am truly sorry to hear that, rk. If you find a poster gets your goat, can't you put him on ignore? There are plenty of people here who are supportive of you and wish you well.
rkzenrage, you're mistaken, nothing has been taken from you.
If you wish to continue holding your breath till you turn blue, it's on you.
rk, you do still have us here, I hope you realize that. If we give you shit (back :)), that's how you know you're still part of the Cellar.
rkzenrage, you're mistaken, nothing has been taken from you.
If you wish to continue holding your breath till you turn blue, it's on you.
Yeah, you're a
great guy.:rolleyes:
Hey look, he's
:rolleyes:
blue!
All I ask is that he stay out of this thread.
Mate, you know you're only going to get the party line with that request.
Why don't you just ignore him? Then if he does post here you wont see it anyway?
Thanks, I'll read them tomorrow.
Have a pretty-good idea why I had the stroke and heart problems.
I have both kinds of apnea.
They filled the entire chart with the neurological hypoxia (sp?, where you stop breathing entirely) so they did not even log how many times I had issues with blockage, the issue with snoring from my deviated septum.
When you stop breathing like that it causes cardio damage and can cause brain damage.
The Dr that was there stated that he got into the field because a stroke and heart attack from apnea killed his father.
I now have to wear a full face mask any time I sleep, clean and care for the machine constantly.
It seems like every time I go to the damn doctor I get another diagnosis like this, some neurological or skeletal bullshit.
I'm to the point now to where I don't even care to know, I just don't want to go any more.
I have an uncle who has to wear the mask. It is a great pain in the ass...
I now have to wear a full face mask any time I sleep, clean and care for the machine constantly.
My brother has one. He calls it his Darth Vader mask. He loves it. Since getting the mask, he actually feels refreshed in the morning after sleeping instead of dead tired. He's also got a travel one that he takes with him when he travels.
Mine has a suitcase that came with it. That won't be the pain as much as the distilled water and vinegar that goes with it.
I'm sure I'll eventually get used to it.
What a relief, though, that the stroke wasn't caused by something worse? Blood pressure spike or heart arrhythmia or something? This sounds solvable, bonus that it's without meds.
I still have to take the meds.
This may or may not be the only cause. I hope it is though. I like to think it.
My brother has one. He calls it his Darth Vader mask. He loves it. Since getting the mask, he actually feels refreshed in the morning after sleeping instead of dead tired. He's also got a travel one that he takes with him when he travels.
Sleep Apnea, very common. I see it all the time in very obese people.
A friend of mine opted for surgery to remove his tonsils (and presumably make more space in his airway) instead of living with the mask. Says it was the best thing he's ever done, feels more energetic than he has in his whole life.
A friend of mine opted for surgery to remove his tonsils (and presumably make more space in his airway) instead of living with the mask. Says it was the best thing he's ever done, feels more energetic than he has in his whole life.
AKA UPPP.
Surgery is very dangerous for me, and my issue is not mainly obstructive apnea (and mine is my nose, been broken a few times, had surgery on it once).
Mine is a nervous system issue, I stop breathing in my sleep, hypoxia.
You need Michael Jacksons oxygen bed.
Surgery is very dangerous for me, and my issue is not mainly obstructive apnea (and mine is my nose, been broken a few times, had surgery on it once).
Mine is a nervous system issue, I stop breathing in my sleep, hypoxia.
Understand. Neurogenic. Difficult case.
SO on edge today.
I'm fucking SICK of being in pain all the time.
The weather has been bad EVERY DAY for a month, without break and I am getting worse every day.
I am always in pain and always have been and it seems like it has been coming to a head and wearing on me until today.
Every muscle, movement, breath, moment hurts, just hurts.
I don't know what to do.
I'm really at my wit's end. I feel like a failure as a father for feeling this way.
Weak.
Since our insurance has changed I have been unable to go to therapy and though all I did was go and talk (he is not invasive at all, just encouraging. Mostly I talk about stuff, what I am trying to do and my hopes) it seems like since them pressure has been building...
Since I have been feeling worse, since the stroke, recent heart and new kidney/bladder problems I've been avoiding talking to my family about anything as well.
There is something else I have not discussed with anyone.
Since some of the recent diagnoses my wife has become distant, she admits it, but it is hard on both of us.
I can't seem to stop thinking terrible thoughts.
I want to be the best husband and father I can but I am in so much pain... it is becoming hard to think clearly.
I know there is nothing you guys can do, but you really are my only link to the world, the only people I talk to any more in any real way.
So sorry for laying this on you....
I don't blame you if this goes ignored. There is nothing that can be done, this is my lot and I know I am still more fortunate than most in the world, I know that in my heart and try so hard to keep that in the front of my mind.
I feel so weak right now for letting this get to me, but it hurts SO MUCH I am overwhelmed and so lonely sometimes, even with my family here because they are afraid to even mention it now. I don't blame them, not at ALL.
We watched my grandmother die for 13 years and I know that they feel this again.
No mother and father should have to go through what my parents are going through and then have the added burden of having to talk to me about it.
I am lost.
There is nothing weak about accepting reality and dealing with it the best way you can.
I imagine you're trying to, "grin and bear it", but be careful not to shut out your wife in the process. She's your best friend and closest ally.
I think the opposite is happening. She is becoming very distant, emotionally.
I do try to do my best to be strong and ... I don't know how to describe it, but not put this on those around me.
It is hard enough on them.
Thank you for your kindness.
First off, rk, don't feel sorry for "laying this on us." Compassion doesn't need that, and I, for one, feel more than compassion. I actually admire you for working so hard and dealing with so much. I truly can't imagine what I would do were I in your shoes. I hope you can also get past feeling weak; if your situation didn't get to you, you couldn't be human.
I really do wish I could do something to help you. I can't stand seeing anyone or anything in pain. This case goes beyond that general rule, though. You have brought smiles to my face and given me interesting points and viewpoints to ponder; I am a bit better person for having had even this much interaction with you. I hope you can find some help; my prayers are with you.
Thank you for the compliment.
I just wish I could explain it.
Nothing has really changed... I just don't feel my normal ability to deal with the pain in the last few days.
My jaw and the area around my ribs swells so it hurts when I breath, eat/swallow and my ears hurt a lot (among other things) but these are wearing on me and making me nuts.
They are not even, remotely, the things that hurt the worst on me.
I feel like I don't know what to do.
rage, I'm glad you felt you could talk to us about it at least. But, you know, bruce is right, be careful not to protect your wife too much from this.
You refer to 13 years of watching your grandma die. This is not what is happening. Your family are watching you live. They are watching you live with pain, but live nonetheless.
If you ever feel that sharing with a 'stranger' might help, PM me. (or indeed any of the dwellars, I suspect)
that sounds horribly wearing rk, you must be ready to bounce off the walls with that.
I think I at least understand how some of the less painful things can wear on you, rk. Damn, that is a bitch. Your frustration over it all must only add to the problem. I wish I could provide some answers instead of just stating the obvious. All I can do (at least for now) is listen, but I certainly am glad to do that much.
Honestly... I want to... but, I don't know what to say any more.
I hurt, I hurt, I hurtIhurt?.... there are other things I am afraid to give voice to.
Perhaps I will, but not now.
Thank you so much for the offer, I may.
I think the opposite is happening. She is becoming very distant, emotionally.
I do try to do my best to be strong and ... I don't know how to describe it, but not put this on those around me.
It is hard enough on them.
Thank you for your kindness.
Consider this. Your wife knows you're doing your best "not to put this on those around you", and is trying to help you do just that, by avoiding the subject. Pushing herself away to make it easier for you. To you she's becoming distant. If so, that's rough on her also.
Obviously I don't know shit, just running it by you for consideration.
but you might try opening up, just a little, and see if she shows signs of wanting to go into it deeper.
It's a fool, that plays it cool, by making his life a little colder.
I am very open... she will not discuss anything with me now.
This is VERY hard on her. I am really the only person she ever trusted completely.
Long story, but, she was abused by her father, had a difficult relationship with her mother, I was there for her when she had ovarian problems and a brain/pituitary tumor, she is healthy now after all of that and we are best friends as well as married. She did not trust me enough to want kids until we were together 13 years. Right after that is when we found out about my back... then every thing else, a little at a time.
I think once my liver, heart and kidneys started to have problems was when she started to pull away, the stroke was the last straw... she is really scared.
With friends and relatives who are living through long term illness or pain I have always been guided by them in whether or not it is a subject of conversation - sometimes they'd want to talk about it, other times they'd want to talk about anything but ... I imagine your wife might feel the same way, as Bruce has suggested, and is avoiding the subject for your sake because you are avoiding it for her sake.
It sounds to me as though you have a very strong relationship, and it will be hard for her to face up to major changes in your shared life; are you able to help her come to terms with those changes ahead of time by talking to her and helping her to plan ahead?
And there is no shame in feeling scared - it's a brave man who can confess that he is scared and needs help. But surely you know that rk.
This is the only thread in the Cellar which I have tagged for new post alerts, because I want to know how things are with you, and because even if all I can do is read your posts, I want to be here for you.
Sorry I've been gone for a while. I got a lot worse and have been unable to move from my bed, and even get on-line in bed for the last few days. It is still storming here.
I am a bit better today, even had a pipe earlier.
Talked to my wife some, told her that I want her to get out with her friends from time to time and get away from this situation, get out. She agreed that we need to talk and that she needs to deal with this more openly with me.
And I have to get out too.
I used to go to my local tobacco shop from time to time, they have recliners there. It is hard for me, but something I enjoy and should do.
Financially we are going to have to finagle a bit to make these things happen, but we need to.
I think the main thing is that I am getting worse a LOT faster than she was ready to deal with, than she expected.
She misses our life, she misses who I used to be and she is going through a mourning period... that I am here, and so sick is making that even harder.
These last few days were so hard in many ways.
Finn kept trying to make me better, it was heartbreaking. I can't talk about it really. My parents are going on vacation for their anniversary and want to cancel it because of the last few days.
I don't know what they think they can do?
What I think everyone's fear is, is another stroke. I passed-out last night when I tried to take a bath. I think it scared Kan pretty bad.
I hate this so much.
Glad to hear you'e a little better today rk, but damn that sounds like a bitch of a few days.
Your little boy sounds like a real sweety.
Keep fightin' rk, try and get to the tobacco shop if you possibly can.
X D
Thanks. I hope to be able to get out of the house soon. If this weather will let up I should feel a bit better. Until then, I abide.
Glad you're communicating with the Mrs. That's the most important thing.
Hang in there rk - I'm pullin for you.
I honestly don't know how to put this, I've been in this house descending into more pain, with more spasms, eating and sleeping less every day for a month.
Been in this bed, in this room, other than one trip to my parents across the street, which nearly put me in the hospital, that entire time.
Every day I keep thinking "tomorrow I will go outside, to the tobacco shop, to see Harry Potter, to play with my son for a bit, ANYTHING", but it just rains more and the barometer just keeps moving...
My son is at my mother-in-law's and I am encouraging her to keep him all of this week and my wife to go out with her sister tonight and to stay with him all day today.
They don't need to see this any more than they have to.
I am LOSING it and feel... this is hard to admit, but I need to get it out... I don't know how much more of this I can take, I need the weather to change. I honestly don't know how much pain the human body can take.
My chest, jaw and ears are killing me still. I am very worried about having another stroke or heart issues.
Again, I am sorry about griping about this again...
Don't be sorry about "griping" ... the cellar is a great place to vent, and people with far less to complain about than you have taken up far more space doing so.
If the internet is all the space that you've got at the moment, then use it any way you hoave to.
I hope the weather changes for you, I hope the pain eases for you, I wish you the strength to bear your troubles as you would wish to.
rk, that's horrible. I have no reference for the kind of pain you must be in, so can only imagine. I do have some experience of being confined (by illness) to bed for a long and indeterminate length of time. Each day hoping the next day will bring some kind of change for the better. This is probably the only part of your situation that i can genuinely get a handle on, and even then it's totally different to my own experiences.
I'm glad that you have a place like the Cellar to come and vent. Virtual friends are still friends and we are hear to listen, as well as to cotinue arguing the toss with you in other threads. :P
S'funny, this little Cellar community, gets under your skin. The other day I was walking through town and, can't recall what line of thought/external event provoked this, started thinking about my friend, L, whose drugs recently had to change and is nowhere near as well because of it and also very down. As I was wondering how she's doing, I also found myself wondering how you were doing (rk). Just briefly, before my thoughts turned to more self centred topics *grins*.
So there you go. Virtual friends and the global village....it's a thought isn't it? Keep venting, rk, we're all mates in here, even those who don't get on. We do care, we are interested, we will still call you out in political discussions. If virtual space is all that's available to you right now, use it as you need.
I liked your last para there Dana. It's so true. ;)
Rkz, I can't add much more than everyone else has already said, but you know I'm always around at about the same time as you seem to be, so pm me if you like. Just no politics in the pm's though ok? :)
I think you're doing the right thing by encouraging your wife to get out of the house sometimes. She needs to keep herself mentally strong for you and your son, but if she doesn't get any let up, that's going to be hard for her to do.
What your parents decide to do is their decision matey. Don't burden yourself with their choices. What you think they should do probably wont make much difference to what they will do in the end. Just let them love you the way they need to. They will never begrudge you anything.
Hang in there. We'll be hanging with you.
The last gripe for a while... my son looks at me in the hospital and tells me he does not want me to die.
I don't even know how to deal with that.
Tell him you'll do the best you can.
The last gripe for a while... my son looks at me in the hospital and tells me he does not want me to die.
I don't even know how to deal with that.
Death should not be feared. Death is peace. Death is relief. Death is rest. Death is rebirth.
Surgery had some complications, but went pretty well, overall.
Healing slowly.
*sends healing energy to rk*
Glad to hear the surgery went well rk.
Another infection and five lodged stones between my kidney and my bladder.
I'm going to have surgery on Monday, again.
I am so fucking sick of this!
I really, REALLY, want a LOT to drink right now.
It helps with spasms, nausea and hunger, not this.
Thanks for the well wishes.
Crikey, talk about a never-ending struggle
You play the hand you've been dealt with remarkable elan, RK - I hope things start to improve for you
I hope I make it to Monday. I am having trouble going to the bathroom and the pain is getting worse.
Took some meds, so I won't be getting any sleep tonight.
Pulled an old Sci-Fi collection to start on, 50 top short stories, old ones.
I can't read, can't focus. This really sucks.
Tomorrow is father-son olympics day at my son's school... my dad was going to do all the activities with him I could not do, but I want to go and do as much as I can.
If I can't I am going to be PISSED.
I'll send out vibes for you rk, hopefully if I think hard enough..it'll help.
(ya never know, it could work)
Did not go with my son. Spent the morning passing a large stone.
Not the stones they are going for on Monday, just got back from the hospital, pre-op (labs, x-ray, urine, EKG, etc). LONG day.
Dad says I would not have been able to day anything they did anyway. Still would have liked to have been there to cheer them.
Sorry you missed out on that. I am sure that hurts in a different way. I hope all goes well on Monday.
Thanks. I have a great doctor, so I have confidence it will. I can deal with the pain.
I don't mind admitting I am very depressed right now. Fighting it though.
Any chance a dietary change can put a stop to the damn stones?
I have done all I can, they are calcite from my bones disintegrating and the fillers from my pills.
I don't drink any milk, eat very little dairy and lay off heavy proteins... all I can do.
Shit Rk, how frustrating for you not to be able to take part in the Father/son sports. Let us know, when you can, how it goes on Monday *hugs rk* I'll be thinking of you.
So sorry to hear that you couldn't be there at your son's sports' day. Hoping the operations go well. Hugs from over here, too!
If I can't come home I'll be sure to ask Kan to let you guys know.
Thanks for all the good vibes, etc. It means a lot to me.
Good luck, I hope it reslts in you being more comfortable.
I'm home.
They said it was the size of a "candy corn" and could not pull it out.
When I came to they kept me under observation until I passed some of it.
I'm bleeding quite a bit, so I'm on antibiotics and straining until I've gotten it all.
Pretty uncomfortable now, but I'm sure this will help me in the long run.
My eyes are watering for you
Chin up
Thanks.
Just passed part of it. Going to be a long few days.
I'm home.
They said it was the size of a "candy corn" and could not pull it out.
When I came to they kept me under observation until I passed some of it.
I'm bleeding quite a bit, so I'm on antibiotics and straining until I've gotten it all.
Pretty uncomfortable now, but I'm sure this will help me in the long run.
*don't get offended but*
JHC!
I have personal experience in this area and I weep for you. No, I weep for *me* that I have similar plumbing that is at risk of a similar problem. JHC, Man, that's what they make lithotripsy for, ain't it? We men don't, uh, have the same elasticity in the genito-urinal tract.. Please... smaller pieces, please... *whimpers, shivers*..
good luck bro.
I have only sympathy to offer - ouch!
I had a BAD night, I feel like I've been kicked in the gut a dozen times.
This fucking SUCKS!
Lot better today.
The last few days have been pure hell.
The procedure really set-off my back and hip.
Thanks for all your support.
Still have not passed the pieces though.
Glad to hear that you're feeling better - hope that lasts for you!
