Last post Thu, Jun 12 2008 5:18 PM by DavidZ. 27 replies.
HI by now you see how much support you can get from the people at disaboom. People just like yourself.I encouraga you to come to the disaboom chat room. Just click on community then chatrooms and its at the bottom of the page. Most times people are in main chat but sometimes tha chat gets full so you go to chat #2. Tonite Friday we are having a special chat presentation at 7 pm in the health chat. two members will start it off. One is a nurse and the other is a dr. Both with disabilities. Come to the chat rooms and you can even make friends. Many of us come on a regular basis. Its busy between 6-9 est. But you will also find people there during other hours as long as you can type you;ll have people waiting for you. I go by Z and I hope to see you in the chat room!!
Good Day Jeepers!
That is my wish for you. I live with chronic pain resulting from a severe back injury with nerve damage for which I have had 3 surgeries to repair. I now have Titanium rods on either side of my spinal column held in place by nuts and bolts. I can't bend at the waist and I hurt all the time. Some days are worse than others. Some things that I have done to help ease my discomfort are to go to a pool and float with the aid of Styrofoam noodles. This takes all the weight off of my lower back. I also go to the massage school and have a massage done to help relieve the tension in my back. Great relaxation and it really does work. I am also getting ready to start acupuncture again, and this has also proven to be a good source of pain relief, if nothing more than a really good power nap for an hour.
Rest assured you are not alone!!!!!! There is always someone to reach out to. I and my family found that our church was a helpful and comforting place. We have made a number of good friends who have rescued us a number of times, no strings attached. I felt sooooo alone, as you do, reach out and some one will hear you. God will hear you and will send a message your way!
An added Welcome and Hello! Obviously, you are not alone in your situation and the associated problems, and you have come to one of the best places to find people to share and find support.
Regarding the situation with the pain meds, I was on oxycontin 100 mg twice daily, the pain patch, and Vicodin to peak pain for over a decade. The pharmacy was a hoot. My doctor finally called the senior pharmacist, after I had switched pharmacies maybe four times, and explained that there was a difference between being "addicted" and being "physically habituated," An addict will require more and more drug, and will often use or go outside legal sources to obtain it. A physically habituated patient is someone who needs pain control, has had the dosage established by rigorous (hopefully) trial with a competent physician, and stays at the dosage level determined for pain control. This explaination worked for the pharmacist, who should have known it anyway. But after that I had no problems filling the prescriptions, or taking them.
I did have some family issus with people who thought I was taking the meds to get "high" and were hostile to that type of attitude. They did not have my pain, and I igjored them, even when it meant that our relationship was severed in some cases.
You need to do what you and your doctor believe is the best to get through the day regarding the pain. Ignore those who don't understand, because they live in a world that is shuttered by their own ignorance. It is their loss.
The depression is very tough, because of the amazing life changes. One of the ways I handled it (besides therapy, anti-depressants that did not work, and meditation that did), was to finally understand that all of life is about change. Nothing will ever stay the same. This change was a cataclysm, but I realized that there are hurdles for many people that need to be adjusted to, able bodied or disabled: charming children turn into drug addicts or have car accidents--I think it is worse to see your child severely disabled than to experience it youself; parents can die of devastating illnesses like Alzheimers and need constant attendance; partners can cheat and leave and steal your financial assets, essentially totally changing the conditions of life, etc.
I am not trying to minimize your situation in any way, I am just saying that to live in the possibilities of the past is to lose the ability to find some measure of joy in the present. And I think that you will be able to do that if you turn your mind to it. No, maybe you can't play with your children the same way. But you are not dead, you can still offer them love, support, counsel, entertainment and so on. They want a "Daddy." It is up to you to find a way to provide that in a new way that gives all of you a new pleasure. A challenge--YES! But one that you can handle, I know.
I hope that this very long post has not sounded preachy. I wanted to share the fact that I too have faced these issues, and found some measues of peace with new understanding. If you are able and interested in reading, I would seriously recommend Eckhart Tolle's book, The Power of Now. If could change your life.
My very best wishes, warm energies, and good thoughts to you and your family. Please feel free to send me a pivate contact if you want to talk, although the chat rooms can be helpful. I have been there and know you can come through this tough time. Bonnie
I hope that none of you really feel alone. Reading the posts on this site help to encourage and give me things to consider, but most of all make me feel that I am not alone. There are a bunch of us out there that don't have the lives we want; that deal with horrific pain. Anyone out there who feels like they need to vent or complain I am certainly here as are a lot of people.
All the best to all of you reading this. Just keep plugging along. Make the best of life, but allow yourself to "feel sorry" for yourself occassionally. It's not easy, but we do it!
Scooby
My heart goes out to you. Talking helps. I sometimrs think I have it bad but then I learn of someone who is worse off and it makes me feel blessed. You keep talking and I'm sure you'll meet domeone who can give you a better perspective of your position. My kids and grandkids have had a hard time coping with my problems. Oneday it was bhothering me . while visiting wiyh my middle daughter. It came to me and I told her that our little family has grown in numbers. When you have the nubers the chances are something bad will hsppen to one. Right then GOD seemed to ask me OK you don't like this , so, you pick the one you would want to suffer indtead of you. I told god that I yhought He chose perfect and that Iwould gladly take anything else coming at my familyin the future. I don't get to read replies thru Disaboom. so my home e-mail is onthecanadian@itlnet.net. hope I helped a little
Mike..just curious but why can't you read replies through Disaboom? If you need help figuring something about the site out-drop me a private message and I'll try to help!
This thread is really supportive...I'm glad so many know now they aren't alone.
Chronic pain is so difficult to explain to others who do not understand what's going on. After all, everyone has had some sort of pain at some point, you shake it off, tough it out, it's just a temporary inconvenience.
For most people, this is true. For us, though, we know what it means to go through our days - all day, every day - with the chain of pain wrapped tightly around us and locked in place.
Back when I was still able to drive I was always getting nasty comments and out-and-out "You know that's a handicapped parking place" all because at the time I was moving about under my own strength, showed no outward indications of being disabled, so was illegally taking that space. The "You want to see my Medicare Card?" response usually shut them up - wouldn't do it today, flashing that social security number around is verbotten!
Well, now I'm in a wheelchair when I'm out - and haven't been out of the house since last August, in fact. And it seems interesting to me that there's so much reference here to not being able to stick to your plans.
Sometimes you simply can't make plans. You can HOPE to be able to do something, but there's never to be a guarantee given. And this is the most difficult thing to explain to children, for them to truly understand that you want to do things with them and it's not their fault you can not.
I became disabled when pregnant with my daughter, so I had her entire lifetime to struggle through, make sure I did all humanly possible to be with her, let her know how much she meant to me, how important and necessary she is in this world.
You do whatever you can. Kids are very resilient and as long as you are making the effort and are the loving, supportive parent they need, they will forgive your physical limitations. It's the emotional limitations they must never have to face.
My daughter is now 24-years-old and I have two little granchildren. Would I love to race down the beach and into the waters of Lake Mich with them on a hot summer's day? Of course! But I'll hold them by my side and read the stories from my own girl's childhood, knowing this is as special for them as it is for me.
We all do what we can and it's important that we are kind to ourselves, forgiving and understanding. We are not alone.
Hey Everyone in chronic pain! I am too! LOL
You have to laugh or you'll cry all the time, I found out. I now look for opportunities to laugh as often as possible, like Shelley said, turn on the comedy channel and have a good raucus laugh (I'm lucky in that sense, I live alone LOL), but whatever makes you feel good, or laugh, or touches your heart in a way that makes you realize there are still good things in life, are what you need to focus on throughout your day.
I have to gear up for a move over the next month, and believe me, just thinking about it is making my pain levels sky-rocket! But, like my girlfriend said, since I do have a month, even if I just pack a box a day, I can still get it done without too much panic-packing at the last minute. I have moved a lot in the last ten years, even half way across Canada, so I am more than sick of it, but I finally got a one-bedroom apartment through the subsidized housing authority here, and I am anxious to get out of this little two-room, claustrophobic, packed with stuff everywhere, depressing environment. I also am anxious to get away from the 15 concrete stairs outside that I have to haul my walker up and down every time I got out. Let me tell you what that can do to your muscles when you suffer from Fibromyalgia and arthritis! Well, it's not good! LOL
When I feel overwhelmed, I ask the angels to come and help me and give me strength somehow to even want to go on. I was in serious depression symptoms for most of the winter and was often into suicidal thoughts, but every time I ask the angels for help, something happens to help me deal with it. And you don't have to believe in angels to do this, just ask, even if you just say it in your head, and miraculously, something always happens for me. Not necessarily right away, but it does happen. I finally was offered a medication to help stabilize my moods and after only three weeks, it is making a big difference for me. I no longer go into those deep, depressive states (even though I was on an antidepressant) or those crazy highs that would come out of nowhere. Thank God for Lamotrigine is all I can say! It is actually an anti-seizure med, but they give it to people with bipolar for mood stabilization and it works really well. I almost feel normal again and I haven't felt that way in many years. Bouncing off the walls emotionally, I don't think, is considered good exercise! LOL So, that was one answer to one prayer and another answer to another prayer was getting my apartment. Getting on Disability Pension was another one. I used to feel so overwhelmed by all these hurdles and challenges, especially while in constant pain, but by taking one step at a time and one day at a time, I have gotten things done.
Of course, you have to learn to pace yourself also. After any activity, no matter how small, I know I have to lay right down and rest. Sometimes I end up power-napping, other times I just rest my body and don't sleep, but either way, it is the only way I can keep going. My friends and family have just had to learn that that is how it is for me now.
I am so envious of everyone who has been given narcotics, at least to try and see if they help. Here in Canada it is like a fight to the death to try and get them for anything. The most my dr will prescribe for me are Tylenol 3's, and even if I take two at a time, they don't do much for chronic pain, but they're all I've got and I'm grateful to have that after suffering for 4 years without anything! So, as much as we may feel sorry for ourselves, with every right to, sometimes it helps to stop and think about others who are suffering even more. I couldn't imagine at first when I came down with these illnesses that anyone could hurt any more than I did, but I quickly found out when I discovered Disaboom that there are others hurting even more than I am out there. Or, they are hurting at least as much as I am, which helped me to feel not so alone. We are not alone and Disaboom gives us that opportunity to connect to others suffering just like us. Thank God for the computer and how small it makes our world really become when you can talk to people all over the world who are going through exactly what we are....right down to the frustration of dealing with doctors and trying to get pain meds, or in your case, trying to deal with the stigma of being on pain meds.
Today I had to go downtown and run around (as much as one can run around with a walker! LOL) getting all the paperwork for this move into my Disability Worker and the application of acceptance letter for the housing office. Honestly, I really think someone sits up at night and dreams up how to create more forms for these agencies! It's just ridiculous how much bureaucratic crap they can come up with that requires me to go down on the bus and deliver these things...oh, and they better be on time, too, or you've missed your chance! God, give me a break! LOL So, now I am in severe pain and it's only writing this letter that is helping to distract me from it. Sometimes I play games on the computer to distract me, cause I can sort of "zone out" with Mahjong or anything repetitive like that and it kind of takes my mind away from the pain, even for a few minutes.
Of course, there are no easy answers and no cures, but at least now you know you're not alone. There are hundreds and thousands of us chronic pain sufferers around the globe, and yes, even here in Canada, eh? LOL I do hope everyone is having a half decent day with reasonable pain levels today. My wish for all of us is to be pain-free again, but that might take a whole whackload more of prayers to the right angels for that one! LOL
Take care everyone and hang in there. One day at a time and one step at a time and one thing at a time and we will live our lives in spite of our pain!
Gentle Hugs,
Maggie
hello, i feel you pain. i do not have a shattered vertabra, but had a compressed disk at c5-c6. had loss of strength, feeling in extremities. had discectomy with fusion. can hurt like heck when helping my son with homework or if i do something i am not supposed to. in my lower back, have lots of complications. always in pain. was addicted to you name it. pain, steroids, sleep, depression meds. i know my pain is not as bad as yours. i lost my job, marraige. this happened in 1998. i know people will look down on you. try not to worry about that. that got me so depressed. no matter what you say or do, someone will always have something to say. i am 55 years old. on permanent disability. i try to workout 3 to 4 times a week to keep my body loose. otherwise the arthritis and other little things cause more pain. my weight went up to 210 pounds when on meds, as all i did was sleep and eat. now i am a more normal 160. i pick and chose what chores to do each day. too much and i will pay. i am in pain always. some days less than others, but i found pain will wear you out. i find i need at least 10 hours of sleep. sometimes more. people without pain do not understand, pain will fatigue you. i became a vegetarian 5 years ago to get off the blood pressure, cholesterol and acid reflux meds. the only thing i take now is 800mgs of moltrin. though i still have pain. i have to stretch often. i cannot stand long. cannot sit long.
you are not alone. i felt many times that i was going to lose it. i have 2 kids that need me. you have your child that needs you. i do not know if you believe, but you are loved. the man upstairs loves you. trust me on that. i do not know if this will help, but i found prayer to help me greatly. i found that going to therapy was not good for me. may help others, but not for me. they do not understand pain.
is it easy now? no. being on disability is tough. i take care of my 10 year old son. cannot date, no money, or time really, i have had to cut so many things because of the economy. so i try hobbies that are minimal in cost. reading, flight simulation, model building. if i concentrate on the misery that is going on with gas and everything else, it can overwhelm. we have to avoid that. take one day at a time.
i was told by doctors not to workout, do nothing. worse thing in the world for me. a friend of mine has a device implanted in his back that is sort of like a tens unit. ihe can adjust it to any level he wants. that may be something to look at. do not give up. it took me a long time to get to where i am. from deep depression. there are good days, some crazy days. one day at a time. but you are loved dude.
Hello. I'm new to this site and shy about writing. That said, this will probably become a dissertation. I have been disabled from work for 14 months. At 48, what am I to do now?! I'm single and have a boyfriend who is dependable, but I'm used to working and providing for myself. I did yardwork, housework, made all decisions for my "self-sufficient" self. Now, because of the meds, I have trouble remembering and organizing thoughts to make good decisions. I'm on the Social Security merry-go-round for disability monies. I have gained 35 pounds. I am small framed, so 35 pounds is a lot. I am on all of the meds that everyone here is familiar with. Like all of you, how do I live? What do I do with my broken body? I have had four surgeries on my spine. The back problems started in the 1970's. I had a fusion at L5/S1 then. Later, two fusions in the cervical spine. Last December, we tried a fusion at L5/S1 area again. I have an extra disc and vertebrae in that area. All of the pain is lower back and down my left leg and foot. Every day, all of the time. I'm a drug addict at the pharmacy. It's the depression that scares me. If I decide this is not how I can live, I won't tell a soul. Lord knows I have the meds here to end it permanently. Will I? Not right now. I am SO angry. I am a Christian and trying to embrace a new church and new town where I had to move because I need help. My boyfriend lives here and tries very hard to help me. I don't have the energy to work at making friends. So much of the time I must refuse invitations because I'm too tired and have pain. Going to church is a push. I was involved in the church in my previous town, but haven't gone to church since being off work. I sleep until 10 or 11. I'm making myself get up and go to church and Sunday school now. I will wrap this up because I need to go back to bed until time to cook dinner.
Wow, looks as if a whole lot of people have a whole lot of pain and want you to know you're not alone. I've never hurt as badly as you do, but my mother suffered terrible pain for decades after her doctor over-prescribed cortisone for ATP and most of her joints slowly dissolved. She couldn't get the kind of medication she needed: her doctor was afraid of violoating new government regulations designed to keep people from getting addicted (even if they were terminally ill.) My mother had to beg for pain relief and carefully ration out each pill. I know she felt very alone most of the time. But it always helped her to have someone understand how much she hurt; then, I think, she felt a little less alone.
