Chronic Pain Support Group
Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...
I was reading a post here and was a bit taken aback by something I read. While I don't believe the author of the post meant to attack or hurt anyone, I do wish to tackle what he said in a friendly way. You see, I want to talk about how many kinds of CP there are, and how DIFFERENT we all are! And while we ARE different and DO different things, we're STILL all a member of that CP Tribe. We still all have pain. We may treat it differently, but we still have horrific, mind-blowing pain that must be treated properly. With that comes different abilities. And those abilities are what make us unique.
In a post about a pain-related article, someone wrote, "Those of us in CP are not well-served by those who SAY they are in Chronic Pain, then go zip lining in Belize." Now, as an RSD sufferer for 17 years, I KNOW that it is possible to have severe CP AND go zip lining, though in my case, not in Belize.
So while I have agreed with his post up until now, I realize that this person just doesn't understand that there are MANY types of Chronic Pain, and that he's relaying HIS experience. He doesn't know mine. And that hurt my feelings a bit. After I grew up, I realized that his ideas might be shared by others here. And that is when I decided that my story might change a few minds on the subject.
I was diagnosed with RSD back in 1997. It took several months to titrate me to a medication for the pain, several months of PT and more doctors than I can recall. Tests- I've had a few. Hell, I've had more than a few. I was young, happy, and then this roadblock called RSD. It took over my life.
What the RSD didn't know is that I'm stubborn! Tell me I can't do it and I will go out of my way to show you I can. My Physical Therapists learned this early. My doctors laugh with me and look at photos of my latest adventures. For years I was RSD Girl- the one determined NOT to let it get me down.
I met my future hubby in 1998 and married in 2000. In 2003, I lost my baby at birth. A few months later, flying back from my mother's funeral and after months and months of taking the same flight, same airline, I ran into someone I'd spoken to before. She and her family owned a travel agency and needed someone to help with reviews, with travel recommendations, and all-around travel and technical writing. She remembered that I'd been a journalist and we exchanged information.
Since then, I've been traveling the world. I'd always been a big traveler but when the RSD hit, I wasn't sure. But as my doctors had me titrated and I was seen every month, I decided to do it. My doctor was my biggest cheerleader! I started out slow, staying close to my then-Texas home by visiting New Orleans, Las Vegas, and Florida. After a trip with a friend to NYC, I started to loosen up.
I've been on morphine for 17 years. Some days I am at a pain level of 8, some days I'm at a 2. In the summer or in warm weather I usually do better. A few years ago I zip lined down Freemont street in Las Vegas. Was I in pain. Yes. Was it a 10 that day? Hell no! But please don't compare pain. If not for the traveling I've been able to do these past 11 years, I don't think I'd have survived.
Some of us have CP well-controlled by meds. In the past few years I've been lucky enough to visit Great Britain, Scotland, Ireland, Germany, Belgium, France, Amsterdam and many other counties. I've been to Aruba, Hawaii and the Bahamas, not to mention bi-annual trips to Cancun. I always schedule my work around my arrival date so I know I'll be okay.
When I was diagnosed with RSD, there was a doctor who said I'd be in a wheelchair by the time I was 40. He was just a resident but he had a family member with RSD in her foot, like mine. THAT day I decided to get my bucket list DONE. That decision turned into a job!
Now, I am 46 and still not in a wheelchair. This summer I went swimming with dolphins in Xel-Ha. in 2000 I climbed a Mayan Temple which is no longer available to the public. I swan among the ruins of Tulum, in the silkiest Caribbean blue water I've ever seen or felt. I got to touch Stonehenge before they closed that off. We took my son to Sea World and rode dollar coasters. Last November I WALKED Universal Studio's Harry Potter Worlds (connected by train) and YES I hurt like hell after. But I won't let my CP define me. I did end up in bed after that one, but it was worth it!
I had several days last winter where I couldn't get out of bed except to use the bathroom and bathe. I've had weeks of that since my stone got stuck and the cold is killing my RSD. I do use a cane a lot now, which I hate, but I accept. In fact, I've left more canes in overhead compartments on airplanes than probably anyone. It's something that happens when you have a tight connection & it's too much work to go back. I'm happy to say it's been about 2 years since I last did that, and canes are easily replaced.
Some people DO have CP and ARE treated correctly. When that happens and when you have the kind of CP that allows you to move around, why not? Is my pain any less b/c I choose to try new things? I fully admit that I have horrific days where I can barely move to kiss my son, which is my nightmare. He's only 5! But I will NOT put myself to bed permanently b/c I have RSD.
I try to live my life and set a good example. If I let the pain win, I wouldn't be doing that. I recognize that I have been extremely lucky in that I have good insurance and a series of great docs along the way. I know that not every CP patient can do what I have done. I know b/c I've never walked in their shoes. I don't even know how much longer I have when it comes to travel. But until I absolutely cannot do it, I'll at least try!
I've had a great life. I've parasailed in the Caribbean and white water rafted in Denali, Alaska. If my foot isn't involved, I go for it. Most trips are easy, and I end up spending my free time by the pool. But if there's a challenge I can physically handle, I'm going to go for it. Does it make me less of a CP patient? No. It might make me feel stupid a few hours later, but that is MY choice.
Now, this past year I've slowed down. The kidney problem and multiple stones are affecting me much worse than my RSD. But then again, the RSD is at ITS worst this time of year. I'm SO glad I did all of those things, as it looks like my ability to do them is sadly, ending. And I know, 100% that IF I hadn't been treated properly, I would've gone no where, done nothing.
We are ALL CP survivors. We shouldn't be fighting amongst ourselves. If anything, we should be supporting each other. If someone had told me at my diagnosis that one day I would walk/climb my way to Edinburgh Castle, I would've laughed. Yet I did it, twice. I went golfing in Dublin (don't golf there- the sea always wins!) and I walked all over Bath, England on slippery wet steps.
The greatest accomplishment of my RSD years was not the Mayan Pyramid or the Palace of Versailles. It was climbing the endless steps to the Anne Frank House and Museum in Amsterdam. The 1st time, I was scared but sure, and I did it! The RSD didn't win. I got to see where one of my heroines lived and wrote. It was awesome! The 2nd time was a bit harder but people were kind enough to let me stop and take a breath when needed.
After each of these adventures, I went back to my hotel room with an angry foot and cried. I cried from pain but mostly, I cried b/c I'd done it! I'm not suggesting anyone try these things; it was a miracle I managed. I'm saying that I did these things before the severe RSD pain took over. Most of my big trips are scheduled in warm weather, and I've had to buy trip insurance because I can have a flare at any time. I've had to reschedule several trips, but I STILL always did what I meant to do, just a little bit later.
Now that I'm diagnosed with a new kidney condition and facing umpteen stones, I don't know how much traveling I'll get to do. I may have to say no to some great opportunities. And as I age, the RSD gets worse. I didn't want to admit that, but last year was proof. Still, I managed to get to Hawaii, UK and Cancun before the pain got worse.
What I am saying is this: if you are able to do something physically, then don't let your CP get in the way. Talk to your doctor. It might be possible. And if you are able to zipline in Belize, more power to you!
Be careful and have someone photograph you. It's YOUR choice. No one can tell you you don't have CP b/c you did these things. YOU know your limits. Your docs know what is safe.
Traveling with CP isn't a picnic. You must have a safe in your room; you can't trust your meds to anyone. You must choose a hotel where you know you'll be comfortable. Always know where the nearest hospital is, and if you're going to do a lot of walking or aggravating your injury, know that you have a nice place to chill out.
While I mostly traveled alone, I made sure that any friend or husband, etc., knew that I'd be spending some of my days in bed, resting. I always plan a day after the flight for ME and the day before the flight home. If there's a spa, I get a massage. But day 1 of any travel is usually me catching up on sleep with my foot on a pillow. The days after overdoing it were also spent in bed. But I would only overdo it IF it was worth it. Again, I was lucky.
I had 17 years to get my pain in hand and decide what I could or couldn't do. I knew when to cancel and when to go forward. I lived an amazing life WITH Chronic Pain. I thank my doctors for that. I thank kind hotel managers who made sure I had extra room to move around and do my stretches, and most important, made sure I had a TUB in my room, not just a shower. (That's a BIG deal in Europe!)
In a few months I will have made LIFETIME PLATINUM status with Starwood Hotels- they own Sheraton, Westin, W, St. Regis, etc. That means that even if I chose another hotel brand for the next 10 years, I still will retain my free upgrades, late checkouts and free internet. I hope that I get to USE that. I hope I'm NOT in a wheelchair and that my hubby & son & I can enjoy traveling. The day I get that card is the day I'll know I won. Not RSD, but me.
I CAN NOT let the pain win. If I'd missed out on all of those trips, I'd be one sad sack. The fact I was offered them is a miracle. To have said, "No," would've really made me wonder "What if?"
I was lucky- I was given great opportunities. I had great docs who support me to this very day. I was at an age where I could take advantage, and most of my adventures happened before my son was born. Now, with kidney stones and this new disease, my International Travel is probably going to shrink away. I am scared of getting a stone stuck when in another country or on a plane. But I can promise you that I'll STILL be traveling, even if it's not as often.
I made it up the stairs to the Temple of the Warriors, and to Anne Frank's House. Those are huge accomplishments when one of your feet has its own thermostat and can click over to "fire" at any moment. But for me, just getting the chance to see the things I've seen was, and is, a miracle. RSD COULD have ruined my life. CP could have seen me take to my bed. But my desire to see new things beat my fear of pain.
Not everyone has the use of their body- I get that. Not everyone has good doctors or the right meds. Again, I get that. But there are ALL different kids of CP. I certainly have a different sort than the man who wrote the post inspiring this one. And I'd venture a bet that some of us WOULD be able to go zip lining in Belize.
Just remember- never judge. If someone with RSD in one limb CAN do these things, remember that she will pay for it later. But don't say she doesn't have CP, or even infer it. We all have different types of CP. We all have good and bad days. There's not one thing on my list that I could do TODAY.
Just like I tell my son that there are lots of people in this world, all races and religions, brown eyes, blue eyes, hazel eyes...there ARE all types of CP patients. And some of us even zip line, even if it is only in Las Vegas! ;)
In a post about a pain-related article, someone wrote, "Those of us in CP are not well-served by those who SAY they are in Chronic Pain, then go zip lining in Belize." Now, as an RSD sufferer for 17 years, I KNOW that it is possible to have severe CP AND go zip lining, though in my case, not in Belize.
So while I have agreed with his post up until now, I realize that this person just doesn't understand that there are MANY types of Chronic Pain, and that he's relaying HIS experience. He doesn't know mine. And that hurt my feelings a bit. After I grew up, I realized that his ideas might be shared by others here. And that is when I decided that my story might change a few minds on the subject.
I was diagnosed with RSD back in 1997. It took several months to titrate me to a medication for the pain, several months of PT and more doctors than I can recall. Tests- I've had a few. Hell, I've had more than a few. I was young, happy, and then this roadblock called RSD. It took over my life.
What the RSD didn't know is that I'm stubborn! Tell me I can't do it and I will go out of my way to show you I can. My Physical Therapists learned this early. My doctors laugh with me and look at photos of my latest adventures. For years I was RSD Girl- the one determined NOT to let it get me down.
I met my future hubby in 1998 and married in 2000. In 2003, I lost my baby at birth. A few months later, flying back from my mother's funeral and after months and months of taking the same flight, same airline, I ran into someone I'd spoken to before. She and her family owned a travel agency and needed someone to help with reviews, with travel recommendations, and all-around travel and technical writing. She remembered that I'd been a journalist and we exchanged information.
Since then, I've been traveling the world. I'd always been a big traveler but when the RSD hit, I wasn't sure. But as my doctors had me titrated and I was seen every month, I decided to do it. My doctor was my biggest cheerleader! I started out slow, staying close to my then-Texas home by visiting New Orleans, Las Vegas, and Florida. After a trip with a friend to NYC, I started to loosen up.
I've been on morphine for 17 years. Some days I am at a pain level of 8, some days I'm at a 2. In the summer or in warm weather I usually do better. A few years ago I zip lined down Freemont street in Las Vegas. Was I in pain. Yes. Was it a 10 that day? Hell no! But please don't compare pain. If not for the traveling I've been able to do these past 11 years, I don't think I'd have survived.
Some of us have CP well-controlled by meds. In the past few years I've been lucky enough to visit Great Britain, Scotland, Ireland, Germany, Belgium, France, Amsterdam and many other counties. I've been to Aruba, Hawaii and the Bahamas, not to mention bi-annual trips to Cancun. I always schedule my work around my arrival date so I know I'll be okay.
When I was diagnosed with RSD, there was a doctor who said I'd be in a wheelchair by the time I was 40. He was just a resident but he had a family member with RSD in her foot, like mine. THAT day I decided to get my bucket list DONE. That decision turned into a job!
Now, I am 46 and still not in a wheelchair. This summer I went swimming with dolphins in Xel-Ha. in 2000 I climbed a Mayan Temple which is no longer available to the public. I swan among the ruins of Tulum, in the silkiest Caribbean blue water I've ever seen or felt. I got to touch Stonehenge before they closed that off. We took my son to Sea World and rode dollar coasters. Last November I WALKED Universal Studio's Harry Potter Worlds (connected by train) and YES I hurt like hell after. But I won't let my CP define me. I did end up in bed after that one, but it was worth it!
I had several days last winter where I couldn't get out of bed except to use the bathroom and bathe. I've had weeks of that since my stone got stuck and the cold is killing my RSD. I do use a cane a lot now, which I hate, but I accept. In fact, I've left more canes in overhead compartments on airplanes than probably anyone. It's something that happens when you have a tight connection & it's too much work to go back. I'm happy to say it's been about 2 years since I last did that, and canes are easily replaced.
Some people DO have CP and ARE treated correctly. When that happens and when you have the kind of CP that allows you to move around, why not? Is my pain any less b/c I choose to try new things? I fully admit that I have horrific days where I can barely move to kiss my son, which is my nightmare. He's only 5! But I will NOT put myself to bed permanently b/c I have RSD.
I try to live my life and set a good example. If I let the pain win, I wouldn't be doing that. I recognize that I have been extremely lucky in that I have good insurance and a series of great docs along the way. I know that not every CP patient can do what I have done. I know b/c I've never walked in their shoes. I don't even know how much longer I have when it comes to travel. But until I absolutely cannot do it, I'll at least try!
I've had a great life. I've parasailed in the Caribbean and white water rafted in Denali, Alaska. If my foot isn't involved, I go for it. Most trips are easy, and I end up spending my free time by the pool. But if there's a challenge I can physically handle, I'm going to go for it. Does it make me less of a CP patient? No. It might make me feel stupid a few hours later, but that is MY choice.
Now, this past year I've slowed down. The kidney problem and multiple stones are affecting me much worse than my RSD. But then again, the RSD is at ITS worst this time of year. I'm SO glad I did all of those things, as it looks like my ability to do them is sadly, ending. And I know, 100% that IF I hadn't been treated properly, I would've gone no where, done nothing.
We are ALL CP survivors. We shouldn't be fighting amongst ourselves. If anything, we should be supporting each other. If someone had told me at my diagnosis that one day I would walk/climb my way to Edinburgh Castle, I would've laughed. Yet I did it, twice. I went golfing in Dublin (don't golf there- the sea always wins!) and I walked all over Bath, England on slippery wet steps.
The greatest accomplishment of my RSD years was not the Mayan Pyramid or the Palace of Versailles. It was climbing the endless steps to the Anne Frank House and Museum in Amsterdam. The 1st time, I was scared but sure, and I did it! The RSD didn't win. I got to see where one of my heroines lived and wrote. It was awesome! The 2nd time was a bit harder but people were kind enough to let me stop and take a breath when needed.
After each of these adventures, I went back to my hotel room with an angry foot and cried. I cried from pain but mostly, I cried b/c I'd done it! I'm not suggesting anyone try these things; it was a miracle I managed. I'm saying that I did these things before the severe RSD pain took over. Most of my big trips are scheduled in warm weather, and I've had to buy trip insurance because I can have a flare at any time. I've had to reschedule several trips, but I STILL always did what I meant to do, just a little bit later.
Now that I'm diagnosed with a new kidney condition and facing umpteen stones, I don't know how much traveling I'll get to do. I may have to say no to some great opportunities. And as I age, the RSD gets worse. I didn't want to admit that, but last year was proof. Still, I managed to get to Hawaii, UK and Cancun before the pain got worse.
What I am saying is this: if you are able to do something physically, then don't let your CP get in the way. Talk to your doctor. It might be possible. And if you are able to zipline in Belize, more power to you!
Be careful and have someone photograph you. It's YOUR choice. No one can tell you you don't have CP b/c you did these things. YOU know your limits. Your docs know what is safe.
Traveling with CP isn't a picnic. You must have a safe in your room; you can't trust your meds to anyone. You must choose a hotel where you know you'll be comfortable. Always know where the nearest hospital is, and if you're going to do a lot of walking or aggravating your injury, know that you have a nice place to chill out.
While I mostly traveled alone, I made sure that any friend or husband, etc., knew that I'd be spending some of my days in bed, resting. I always plan a day after the flight for ME and the day before the flight home. If there's a spa, I get a massage. But day 1 of any travel is usually me catching up on sleep with my foot on a pillow. The days after overdoing it were also spent in bed. But I would only overdo it IF it was worth it. Again, I was lucky.
I had 17 years to get my pain in hand and decide what I could or couldn't do. I knew when to cancel and when to go forward. I lived an amazing life WITH Chronic Pain. I thank my doctors for that. I thank kind hotel managers who made sure I had extra room to move around and do my stretches, and most important, made sure I had a TUB in my room, not just a shower. (That's a BIG deal in Europe!)
In a few months I will have made LIFETIME PLATINUM status with Starwood Hotels- they own Sheraton, Westin, W, St. Regis, etc. That means that even if I chose another hotel brand for the next 10 years, I still will retain my free upgrades, late checkouts and free internet. I hope that I get to USE that. I hope I'm NOT in a wheelchair and that my hubby & son & I can enjoy traveling. The day I get that card is the day I'll know I won. Not RSD, but me.
I CAN NOT let the pain win. If I'd missed out on all of those trips, I'd be one sad sack. The fact I was offered them is a miracle. To have said, "No," would've really made me wonder "What if?"
I was lucky- I was given great opportunities. I had great docs who support me to this very day. I was at an age where I could take advantage, and most of my adventures happened before my son was born. Now, with kidney stones and this new disease, my International Travel is probably going to shrink away. I am scared of getting a stone stuck when in another country or on a plane. But I can promise you that I'll STILL be traveling, even if it's not as often.
I made it up the stairs to the Temple of the Warriors, and to Anne Frank's House. Those are huge accomplishments when one of your feet has its own thermostat and can click over to "fire" at any moment. But for me, just getting the chance to see the things I've seen was, and is, a miracle. RSD COULD have ruined my life. CP could have seen me take to my bed. But my desire to see new things beat my fear of pain.
Not everyone has the use of their body- I get that. Not everyone has good doctors or the right meds. Again, I get that. But there are ALL different kids of CP. I certainly have a different sort than the man who wrote the post inspiring this one. And I'd venture a bet that some of us WOULD be able to go zip lining in Belize.
Just remember- never judge. If someone with RSD in one limb CAN do these things, remember that she will pay for it later. But don't say she doesn't have CP, or even infer it. We all have different types of CP. We all have good and bad days. There's not one thing on my list that I could do TODAY.
Just like I tell my son that there are lots of people in this world, all races and religions, brown eyes, blue eyes, hazel eyes...there ARE all types of CP patients. And some of us even zip line, even if it is only in Las Vegas! ;)
We don't have to go zip-lining to feel positive instead of negative about our lives. One little thing can be a huge monumental thing to us and we owe ourselves a pat on the back for the doing, instead of a boo hiss for what is lost.
The dogs got their bath yesterday (finally and the nose likes it a lot). I got a shower. I feel triumph!
For the record, I never said anything detrimental about you or anyone else on this board.
I've fought through more than you know. At present I've been housebound in severe intractable pain for months so my dreams are currently on hold. I prefer to think of them as castles in the sky that one day I might have a chance to put foundations under. But some days, and after 25+ years, I sometimes don't feel so sunny about it. Call me human. Not negative.
It's a victory when I can shower, make a simple meal, accomplish basic tasks of daily living - I need assistance with all of them at present. I try to make memories with my children each day and embrace whatever little joys come my way. I regularly challenge myself and ask my care team too.
I can be happy for you that you can achieve world traveller status. Good for you. CRPS is painful and known to go into remission at times. I am sincerely glad that's a possiblity for you. However it's not true for many in pain, and it doesn't negate the detrimental impact of a rising tide of opinion against CPn patients who cant keep up. A significant population of CPn patients find getting out of bed an accomplishment fairly equivalent to climbing a mountain. Judging them as unwilling to celebrate life or see the possibilities is grossly unfair.
You also took one strand from a response i posted about PCPs stepping out of pain care and spun an entire diatribe without mention of that context. You failed to mention that I also said I was being somewhat facetious given my current frustrations, and that at heart I really was glad for those who could accomplish such things. And that my greater irritation was with celebrities whose situations allow them the best possible care and accommodation - their stories also become untenable examples of how a CPn life "should" be lived!
After yet another grueling put down from a judgmental health-competitive relative, I broke down at my PM. I asked for the umpteenth time if here was anyway I'd ever be able to resume things I'd loved - walking barefoot, sailing, a carnival ride..or even everyday things like shopping, vacuuming, etc. I told him about said relative's zipling exploits & ease of daily activities & the put downs. He hugged me gently and said you're not lazy, your conditions arent going away, but we'd work together to manage things to get the best quality of life for me as possible. I'm not just some whiny person who wants pain to define me. I want a life. And I have a life. Apparently its required far more adjustment than you understand - I certainly feel judged!
My PM was irritated to the point where he said it was inappropriate for that relative to be Rx pain medication (given the (very many) details known - its a completion so she keeps nothing back). He was simply evaluating known details - I'm sure you'll slam that too but anyway the real point is suppose my kind of debilitating pain became the standard by which you were judged? Suppose a doctor analyzed your long list of exploits and decided to take away the morphine prescription? Wouldn't feel fair or give much hope now would it?
I sent you a PM when i noticed your question in that other thread. now I find you preferred to deal with it in this missive. Whatever. Please don't bother slamming me further. Btw, you need to edit your rants - I'm a woman just something else you didn't know about me.
Maybe I can't be a world traveler, but I'm heading off into the sunset. Thanks though for challenging me to reconsider the wisdom (or lack thereof) of expending myself on behalf of chronic pain patients. Time to reexamine my goals AND my supporters. Guess the latter are grossly lacking here.
Wellness wishes all.
I agree that with so many things that have been said. I have lived under the proverty level for twenty year but I have not let it stop me getting help or fighting for myself and the things I want to do and see in my life. It might not be traveling all over the world or what not because I have had 17 surgeries and I am only 44. I have had both my feet and legs operated on. I have had 4 major back surgeries just so I could walk. I have had both my arm operated on and I have had cancer that I have had to have operated on. The list goes on and the level of pain has been so bad it has put me in pain for days and week and months but I have had good day. I also have a new should joint and I have to go have the other should replaced which has kept me down. I have a rod and six screws in my back that allow me to walk.
All that said I'm proud to say that I found the resources and the strength to go zip lining not far from my own back yard. It was so amazing and yes it hurt like hell but it also made me feel like a million bucks and I had all kinds of help and wonderful support to do it and it didn't cost me a single penny cause I looked hard for the resources.
Whether you are in bed or not you can still have a life if you put your mind to it.
You can spend your whole life in bed and be happy and fulfilled. Did you ever here about the two men that were in a nursing home unable to get out of bed. The one man laid in bed and told his roommate everyday about the park beneath his window and what the weather was like everyday. He would tell of the children below playing and everything he say like the birds. He always has a positive outllook. Well one day he died and his roommate ask to be moved to the window spot so he could look out the window that his friend told himm about everyday for years. Well the nurse said there was no park below the window. The man argue with her so she moved him so he could see but out the window was a brick wall. The many in the window spot was blind and couldnt see anything but in his mind all that beauty existed and he wanted to share it with his friend. My point is that are mind set can really help us feel good or even ok about where we are and not compare ourselves to anyone else. Be happy for the person who is in that much pain who can still get out. We never know when our situation might change or someone can and will come along that can help you in any number of ways. Stop comparing and have compassion and excitement for the person who is able to get there and go and do.
I'm never going to let my conditions get me down. Sometimes I spend a long time in bed and but when I am able I get up and go.
So life goes on. I have a million things to say but have to run for now. Be ki d to one another and don't compare.
IF you read my original post, it is meant to be a missive on how different we are. Yes, I was originally a bit upset by the zip lining comment RA made, but I did NOT direct the post AT him or about him and simply wrote a post about all of us sticking together.
Now I read that he's taken it personally. How sad. I NEVER meant for that. I don't know if the post was thoroughly read b/c I was talking about CP and how we all can do different things. I ALSO made a point to tell people how I got my job. People here assume I have money b/c I traveled which I had to laugh at. Since my diagnosis, I've made much less working than the average person my age, but I took the job so I COULD see the world, or the parts I wanted to see.
My 5 year old came home with pink eye, ear infection and strep last week. My DH got it and now I have it. I didn't visit this site for a few days and wow, I was sure shocked today to read (AFTER I'd replied that it was no big deal and I understood!) that the poster in question was angry.
But honestly, pain causes anger. And if he didn't understand the thrust of the piece- how different we are, perhaps he does now. Because I never intended to offend anyone.
IF I see right, I was last on just before RA wrote his reply to my post. I haven't been on for at least a week if I'm doing math right. To RA I say, I am sorry that you took the post as you did. I replied to your message before checking out the board and was shocked that you could send such a kind message, then such a harsh post. But my reply to your message still stands.
I understand that you weren't attacking me personally in your zipline comment. You couldn't even have known about that! Just as I wrote
"While I don't believe the author of the post meant to attack or hurt anyone, I do wish to tackle what he said in a friendly way. You see, I want to talk about how many kinds of CP there are, and how DIFFERENT we all are!" I believe it. I set out by mentioning you, not by name, ONCE, only to say that I was a "bit taken aback" by one line of a post.
So if you read the whole thing, you'll know that I didn't attack you, didn't even include you beyond that 1st, friendly statement. I think we're all one big tribe and need to look out for one another. I am thinking that you assumed my absence from the board & lack of reply meant I was angry. I don't work that way.
Reread what I said. Then read what you said. Pain can make us say & do awful things. I read your message just before this and get where you're coming from. The post was about differences, about LIVING with CP. It was never a slam, or an attack. I would never do that.
Because I spent a week and more dealing with illness AND still recuperating from my kidney ailment, I didn't have time to check in as often. I'm sorry I missed your message. But I AM glad I wrote the post. It's so true that we're all different. We have different skill levels and pain that is always there but worsens at times, or pain that comes and goes. I've had horrific pain due to the weather, and kidney stone problems leading to kidney troubles. That's why I wasn't here.
The overwhelming response was positive and I thank the people who wrote me and left posts. We ARE all different. But no matter how much pain I'm in, I won't be attacking anyone. Raggedy Andy- it was NOT meant as an attack, and none of it beyond that short reference to the zip line had ANYTHING to do with you PERSONALLY.
I had hoped my thread would bring us together as CP survivors. We need each other. And we don't need to be fighting. So, in my mind, the message you sent which was gracious and kind and real is where I leave it. And we all should continue to support each other. Now, time to get ready for bed so I can face the kidney stone doc tomorrow and hear all about this Sponge disease I supposedly have. As if ONE odd disease isn't enough, now I need a second??