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Heather Mills - Amputee Forum


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Everything posted by pogoboy

  1. pogoboy

    ACA Conference 2006

    I've never been to an ACA conference. Not that I'm not interested, just seems like I'm always saving up for something else, but maybe this year I'll go? Who do I need to contact about possibly doing a wheelchair fencing demo/clinic at the ACA conference this year? Mario aka pogo
  2. pogoboy

    The Journey

    It's nice to occassionally read about someone's experiences, traveling with "special considerations," (sounds better than special needs,) turning out well. Not that it shouldn't be the norm, and preparation and good communication with the airline people is key to ensuring a better flight and when necessary change over/transfer experience at the airport or train station. If you're an amputee and travel with a wheelchair, (as I do most often,) gate checking your chair is your best assurance that your chair will be stowed last and not treated as merely luggage or baggage and treated more roughly. I'm not sure how other amps deal with all the removable parts on their chairs when they surrender their chairs at the gate, but I (try) to remember to remove anything and everything that can detach or possibly fall off in the baggage compartment - and finding a place for these things in my carry on or storing them overhead or underfoot at your seat can sometimes be problematic also. I have mentioned in other posts, but I will mention it again here, that my wheelchair preference is a rigid frame wheelchair as opposed to a standard folder, but to be honest this is somewhat of a lifestyle change even for wheelchair users. There are less things to come off or fall off of the chair or need to be detached before the chair is stowed on the plane. I also travel with forearm crutches and very infrequently with my prosthesis, (although I have been known to bring it along on some of my epic voyages.) My mentally is "whatever it takes" to get there, with as much kindness and consideration to all the support personel, because they are the ones that are going to make your travel experience more comfortable and enjoyable. In contrast, when I drive I almost never allow others to help me, whether that means loading groceries, my chair in or out of my vehicle and so on. If you have a routine and most of us do, it's far easier to follow through with that then get off track with someone else's well-meaning intentions. You know what I mean. I think that just about sums up my thoughts about this aspect of disabled living. Cheers, pogoboy
  3. pogoboy


    This is what get's pogoboy around. It's not too flashy, but when I first saw it, I was a sucker waiting to be had by the car dealership. (I thought, well it should get better gas mileage being a 6-cylinder, but I was wrong with the 4 x 4 and all.) It's been great for hauling all of my stuff like wheelchairs and a canoe. Last spring I was in the wrong place at the wrong time on three different occassions and as a result sustained major hail damage, but as you can see, the bodyshop did a great job restoring it to looking almost brand new.
  4. pogoboy


    Dear Ed, They put in a very modern light rail system throughout most of the city of Athens and as I remember, it was fairly accessible by wheelchair although there were areas where the curbcuts were not all too user friendly. I made the mistake of going to the acropolis in my wheelchair and it's a good climb in a chair in addition to the fact that the road is paved with cobblestone and you can only go so far, then you have to take an elevator. I didn't go up as there were so many people in wheelchairs that day, it would have taken literally hours. (I should have taken my crutches!) There were many lovely cafes and restaurants at the base of the acropolis from which you might have a good view of the Parthenon. I accidently wandered into the agora and found the temple of Phestos. I didn't make it to any of the islands on this particular trip, but I wish you all the best in deciding where you might go and how you spend your time there. Cheers, pogoboy
  5. pogoboy


    I noticed most of the postings on this topic took place a while ago, nevertheless, I see a few people still responding so I'll put in my two cents about getting around. I'm a RAK, R-HDHP so wearing a prosthesis isn't my favorite thing to do. I can go days, if not weeks without wearing my prosthesis and I notice when I do put it on, I'm much slower and not nearly as nimble without it. My primary mode of getting around is a light weight manual wheelchair - the sporty kind with a rigid frame. I haven't had a folder in years and will never forget trying to be cool as I was speeding through a common area at a university and decided to do a quick 180 degree turn and suddenly found my folder collapsing and myself on the floor. After that I decided that rigid frame wheelchairs were better for me and they also make better sportschairs if you're into recreation or more serious competition. When I use crutches, they are the forearm variety although as I'm closing the gap on 50, (I'm 46 now,) I'm beginning to re-evaluate using longstrand crutches which allow you to make better use of your hands. Since my nickname implies I'm into hopping, "pogoboy," I'll own up to the fact that I hop far more than I should and I have met a few amputees over the years who cautioned me to take better care of my one remaining lower limb and avoid hopping as much as possible. Personally, I don't think much about what I look like, being in a chair, or on crutches or wearing a prosthesis and the most important factor is how much effort is it going to take and/or how long will I be out and about and what am I going to feel like afterward? I think we all manage as best as we can with what we got - just like everybody else and occassionally when that able-bodied person holds the door open for me, I say, "thank you," and hobble through. Hell, I even hold the door open for other people sometimes myself. I've made some pretty dumb mistakes over the years and you would think anyone who has suffered the loss of a limb or more would learn to take better care of their bodies, but we do tend to get caught up in the moment and press the envelope. So long as we understand the consequences and not take it out on others when we exceed our physical limits. Life is about choices right, so choose wisely or choose capriciously. You can always make another choice.
  6. Most of the people on this site are probably not old enough to remember those old Johnny Wiessmuller Tarzan movies with the "great white hunter" and all of his equipment being carried by dozens and dozens of native Africans through the jungle. That's almost what it's like when I travel to some of my fencing competitions with two wheelchairs, a fencing bag, and maybe one or two other smaller bags or my violin. Packing becomes an art and my second wheelchair becomes a very expensive dolly to ferry all my equipment from point A to point B. Abled-bodied people are always ready to lend a hand, but I try not to encourage them as they never realize what they are getting into and I generally manage fine by myself. What I noticed during one of my last flurry of trips between 2002 and 2004 was that the most organized and helpful people I found where in France whenever I had to make any train changes. In contrast it wasn't nearly as easy for me to get around in Holland or Germany. I don't know about other countries, but I was able to buy tickets for less and/or upgrade to better seating and also you are allowed to have a travel companion to help with your stuff. (I didn't really take advantage of this.) It's something you might want to check out if you're thinking about travelling in Europe by train. Enjoy the journey! pogoboy
  7. My sincere apologies for the page loads or lack there of. I don't know what the problem is either and sometimes it times out on me too. I suppose it's time for me plunk down some bucks and launch a "proper" new website. (I've been wanting to do this for a long time so that I can stream some video on wheelchair fencing.) HPHD hemipelvectomy hip disarticulation. R-AKA Right above the knee amputation I finally took my laptop into the shop and will try to check in as I am able to post or reply. Sincerely, pogoboy
  8. I just happened to see a really cool video on PBS about the transportation plan for the I-35 corridor and it looks like there's a light rail system in the works to be built between Austin and I think it was Leander (as the terminus.) I don't remember how far south the rail will extend and I don't think there's even been any ground breaking on it yet. Not to discourage anyone from moving here, (central Texas,) but it's already pretty crowded and in my opinion, it's a whole lot easier to get around in Houston even with more people because there are more options to travel east and west as well as north and south. In and around Austin, your options are limited, although they are trying to come up with solutions to move the people around. I don't really differentiate between opportunities for amps and mobility-impaired persons (in general.) There's all kinds of wheelchair sports basketball, tennis, fencing, lots of good roads to go cycling or handcycling. All kinds of waterways - rivers and lakes so if you like acquatic sports... In the general area we have two constant temperature springs that stay quite cool in the summer. San Marcos River and Barton Springs. Barton Springs is located in Zilker Park in the middle of Austin and there's a great hike and bike trail that is always being used and full of people, dogs, fresbies, and kites. If you like music, there's all types of bands playing around town and in neighboring cities. It gets really hot here in the summer and it almost never snows. We have tornados and occassionally some tropical storms, but mostly we are almost always on the verge of another draught. Let me know what other info I might be able to provide you about the area. pogoboy
  9. All serious kidding aside, above all else, (and granted what's funny to us personally, doesn't always translate into something we can relate to others,) we all have those experiences that give us pause to laugh at ourselves and acknowledge the humor in the human condition. Especially after loosing an arm or a leg or more. I have or had a friend once who is on a sip-and-puff power wheelchair, "Dave," and he really amazed me with his attitude. Dave couldn't do much with his body except a little shoulder shrug and then of course there were his facial expressions. In the early days, Dave and I fought on the same side (for truth and justice) and I am not sure what happened but, (in my opinion) and that of a great many more of his former friends, we came to the conclusion that he sold us all out and joined the good old boys club. (And much like our sitting president, I am sure he thought he was doing the right thing.) I moved on both emotionally and literally. When last I saw him - it was clear - the distance he established between himself and others was taking its toll. I hate to feel sorry for anyone especially someone in a wheelchair. We all hate pity don't we? I miss my friendship with him and his good company. It's strange how a little politics can change us and drive us further away from the people we love and care about - I'm not sure why I am sharing this and it wasn't my intention to draw on this particular memory, but I suppose everything we do - hopefully we can draw a lesson from and as long as we have the capacity to think and consider, but mostly feel - as I learned first from this former friend of mine - in the end all that we have is our attitude. Thank you Dave for teaching me that so that I can share it with others and keep it close to my heart and center when I am on the road and maybe it appears I am so far down the road, I don't know whether I am coming or going - but still have some semblance of humanity about me and still have the capacity to care about others and be respectful to them where ever I go, whomever I meet.
  10. Oh, I almost forgot to mention - Please don't ban me just yet! I'm not really so talented and I'm much older now so really I've practically lost all of my charm, (that is if I ever had any in the first place.) I do enjoy a good bit of humor now and then and I haven't even picked up a saber in quite a while. pogoboy
  11. A sudden flurry of activity or maybe that's the problem with being in a different time zone. I think the expression here is if you snooze, you loose. What do you say in your neck of the woods? I can't say as I mind anyone posting in this thread. Greetings to one and all. My laptop is, I believe in its last throws and I may need to start shopping for a new one very, very soon. I suppose there's always the local library if I feel the urge to share a thought or two with someone online. I had an adventure on the M20, yes I believe thatis where it was some many years ago when I was visiting England. I was staying with an American friend of mine in a little area, close to London. I don't know what they call the region, maybe Middlesex or Uxbridge - the town is called Ickenham, does that sound right, anyone? Anyway I was preparing to go on an adventure. One of the early ones I think I may have eluded to earlier. And I was doing a bit of commuting back and forth on the M20 into London to get ready for my trip to the continent. This is back when I had two legs and did lots of cycling. It seems every time that I ventured into town, it didn't take long before I lost my way and found myself trying to figure out how to find my way back out of town again and back onto the M20 and back to my friend's house. I do remember the Hoover plant somewhere along the route. I did manage to find my way to Victoria Train station and I suppose that is as good a place as any to begin an adventure. That I'll never forget and or visiting a few local pubs to discover what the locals prefer to drink. I just now started to drink Guiness again after all these years. I don't really want to be too long winded as I don't have anything exciting to say - and really was quite surprised that my laptop hasn't winked out just yet. Thanks for your patience and indulging me. Cheers! Mario aka pogoboy
  12. pogoboy

    I realy like this forum

    Hi to one and all, I haven't been a member very long, but I really like this forum. FYI - I might need to do some major repairs on my pc and/or replace it so if I slip off for a while I'll be back as soon as I can. I've enjoyed reading everyone's posts and hope I can contribute as much as I'm getting out of being here. Take care, pogoboy
  13. JohhnyV, Thanks for sharing your thoughts and some of your methods to keep us on the positive side of our energy meters. I have been thinking lately about relationships and how they can affect us and even as you said when we are out and about in a crowd. Even this can be pretty overwhelming at times. We all have experiences in our lives that trigger powerful emotions and the things we associate them with – well – the sooner we learn to recognize the causes – the better we are able to cope and hopefully master our responses. I am 46 now and cannot say that I am completely immune to the din of the crowd or their cacophony of emotions that swirl around us like so many eddies and currents and counter-currents. I love the water and I am a great swimmer, but I have a healthy respect for it just like I do for masses of people, for they will surely drown or asphyxiate us if we don’t occasionally come up for air and/or learn to tread water as needed. (I haven't shared this in the forum yet.) When I was 14, my father died quite suddenly due to a misdiagnosed deep vein thrombosis that resulted in a pulmonary embolism and coronary on Oct 11, 1974. The memories of that day are still rather cloudy. Only a few things stand out - like the prevailing feeling of discomfort and irritability that clung to me like wet clothes throughout the day. And when I arrived home, I couldn’t quite understand why there were so many cars parked along the street, in front of my house and in the driveway. There, was my sister and some of her friends sitting on the lawn. The green of the grass seemed cooler and inviting, but I didn’t stop and I continued walking toward the front door. Somehow these were pieces of a puzzle that my mind couldn’t quite fit together and it only served to irritate and confuse me further. When I entered the house, it seemed darker and much more crowded, than usual. It was full of people I knew and people I didn’t know. All I could think of, was, “Where is my mother?” and “What are all these people doing here?” I saw my mother and began to make a beeline toward her when I was intercepted by Mrs. [buchany.] I could hear her words, but I couldn’t associate them with her lips moving although she spoke softly and deliberately to me. I‘m not sure that my mind could wrap around the idea – but somehow I already knew what she was going to say –“Your father is dead!” I flashed back to earlier that morning and the last view that I had of my father down the hall, getting ready for work. He was in shadow and I could only see his silhouette and hear him coughing and I thought to myself even then, that he didn’t seem quite well. Now everything made sense in the most horrible way and it was as if I was under water and had to get to the surface immediately – I was out of breath. I couldn’t breathe! I ran out of the house and down the street to the park and my swing where I often went to seek safety and gather my thoughts. This time was very different and I had already begun to spin an elaborate fantasy where my father had really gone, no doubt on some kind of clandestine operation in defense of our country. I felt the breeze I generated with my each and every pull and push of the metal chains that now I clung to for their safety and rhythm that they generated – bringing my heartbeat to an acceptable pace – calming me at least for the moment. Long before I became disabled – I suppose I was a wreak and it’s been a slow recovery for me throughout my life, knowing full well, there are so many experiences that I never shared nor will ever share with my father. It’s molded me into the person that I am today. I am much better with crowds now and occasionally enjoy a good major league basketball or baseball game. The things we take for granted and/or bury just beyond our consciousness, these are the things we have to learn to acknowledge and watch out for – especially when they trigger responses. We all have emotional scars and a reaction based on our own individual histories and it all has some impact on who we are and how we deal with life. I am a glass is half-full sort of guy and although I have some dark streaks in my past, I do feel that the dimensions of my personality and my character are only that much deeper and richer for my life’s experiences. It’s o.k. that we are not invincible, that we are human and suffer the human condition, but also there is so much beauty and uniqueness in each and every one of us – and it gives me great hope and pleasure to experience this too – especially when it’s least expected. I wish each and every one of you a good and safe journey – as we are all special and have the capacity for all the things that make life worth living… Mario Rodriguez aka: pogoboy
  14. I suppose not being a frequent publisher on forums leaves me feeling a little inept when tyring to figure out how to publish my pic - basically the same one I used for my avatar to settle all claims on who I look like most. (Probably me.) Anyway, I keep trying to publish a pic, but all I seem to be able to do is provide a link? The link is to my website for wheelchair fencing - The site is in need of a little tidying-up and good housekeeping, but you can discover that for yourself. Just in case this doesn't work, I'll list the link for the website and I was able to manage a link in the index to the pic at the top, right-hand corner with my email info. Sorry that I'm not more resourceful. pogoboy The picture (below) http://mywebpage.netscape.com/wcfencer/page9.html My website (below) http://mywebpage.netscape.com/wcfencer/index.html
  15. Imaginations run rampant - again a pleasant fantasy - alas - I am nothing more than a middle aged - although young at heart - man. Ah, to be twenty-seven again... That was about 2 years after my original diagnosis. Here's a photo - not the most flattering, but I don't seem to have many photos of myself.
  16. Not to change the subject as I am very flattered by your post and quote, but I am currently waiting to receive a new power supply for my poor old laptop - all that traveling has taken it's toll and staying online has been extremely tedious for me. The idea and/or expectation of something is almost always more exciting than when it happens, because of course, it's over before you know it, and savoring those precious memories is all you have left. That's the way I get right before I leave on one of my trips - butterflies in the tummy - maybe a slight irregular heartbeat and then that longing for being on the road again. It's both practical and romantic to be in the moment and as fleeting as our lives can be - what's the expression - I'm in love with the idea of being in love? I heard something recently about eating dark chocolate and how it releases the same chemicals in our bodies that we get when we are in love? Has anyone else heard this? I do l-o-v-e dark chocolate, even more than I like milk chocolate. You know I don't think I would be doing you any favors my dear to accept your proposal - sight unseen - as I'm not the catch or any kind of catch that you think that I am - but it is a lovely idea and I think I could ruminate over that and hold it in my arms and rock it back and forth for a while before letting it go again so that we can all continue on our seperate journeys... I suppose if I am in love with anything, it's just what's around the corner - clear skies, or threatening thunder and rain. I have visited your site recently and read about your accident and miraculous recovery and you truly are a lucky girl as I am quite the lucky boy to be sitting here in front of my laptop typing away! Wishing you a wonderful day whenever you return to read this message... Most humbly yours, pogoboy
  17. Thanks for your kind words, Lizzie. I'm not a writer and whether it's a good or bad trait - I think after all these years I have become quite a sentimental old fool and tend toward the romantic, maybe just a little too much for my own good. pogoboy
  18. Greetings to one and all at this site. I suppose introductions are in order and I will try to keep it short and concise, especially for those up late at night. (I know sometimes I have trouble sleeping - especially when those cold fronts roll in and the phantom sensations turn into phantom pains.) I had a minor accident in 85 from which it was discovered that I had a malignant tumor - clear cell chondrosarcoma - a very nasty tumor in my right hip. I was in the military and stationed overseas. Actually I think I was in the hospital about a month to a month and a half before I received a definitive diagnosis from Johns Hopkins from the biopsy they took while I was still in Germany. My accident was in July and the second surgery (to remove the tumor) occurred in early September in Gainesville, Florida Shands Teaching Hospital. My doctors attempted to reconstruct my right leg after basically removing the top of my femur and the lower part of my pelvis making me a right-hip-disartic-hemi-pelvectomy, (more alphabet soup) or HPHD for short. The reconstruction turned out to be a non-union and after 7 years of different operations to stimulate union - I decided to loose the leg. I suppose I was luckier than some people in that I had plenty of time to come to what was an appropriate decision for me - and I haven't looked back since. I am a major advocate for using anything and everything that improves your quality of life - wheelchairs - crutches - either forearm or longstrand - and oh yes, those prosthetic device thingys. Hip disartics or stumpless AKAs have a difficult time with the mechanics, but it can be done -it's just very labor intensive. (Not my favorite mode of ambulation.) I primarily use a rigid frame sportswheelchair to get around the house or around town and/or when I go to the grocery store. In general being an amputee requires me to be in better shape than I would need to be if I had two legs. I was always into being active so I haven't let this slow me down much and as a matter of fact - I have to admit it's opened up many doors for me having participated on no less than three US Paralympic Teams. So if anyone has any questions or is interested in wheelchair fencing - I can tell you how to get started and/or where to go for help. I'm 46 now and live in the country just outside Elgin, Texas, about 30 miles east of Austin. I enjoy all kinds of sports and whether you realize it or not - you can do just about anything you put your mind to as an amputee - In the disabled sports world, we are at the top of the food chain so get out there and have fun!
  19. In answer to your question in the difference between France, Germany, & Holland - I just remembered at the time of this particular trip, I believe there was a strike or some kind of worker protest either in effect or maybe it was just over - it was as I recall - every man or woman for him or herself and quite disorganized in Holland. I like traveling through Germany as my German is better than my French, but for some strange reason - I've made lots of friends in France and overall stayed there longer than anywhere else in Europe with the exception that when I was younger and an AB - I lived for two years in Greece on the island of Crete. I know it's a drag to bring a wheelchair, crutches and any other paraphanalia that goes with being disabled - and to have family with - I know that's got to be difficult. Maybe that's why I enjoy traveling alone so much since I don't have to ask people for help unless of course it's absolutely necessary. Traveling with family and friends can be so muc more taxing and obviously planning and logistics can make the difference between a fun trip and a real adventure. O.k., here's one even better. It's my paradigm for life. When I was fifteen I was an exchange student in Germany and it was my first experience outside of Texas. After making several friends, I chose to go back to Europe when I was 19 to visit some of my new friends and see my host family once more. I saved up enough money to take a trip for a month and a half and then did a bike tour through a fair section of Central Europe - solo. I actually started out in England and took a train down to Folkstown and the sealink to Calais, France then the train continued on to Paris. When I arrived in Paris, I spoke much less French than I do now and was totally lost. I thought that I had to get off the train and go to another train station, which I did in the middle of the night on my bike navagating along the river Seine and a few recognizable landmarks and just as I arrived at the other train station - I literally met the same train that I had been on and reboarded the train to my final destination which was the border between Switzerland and France. I had lost my seat and the train was now full of young men, army recruits going to Deijon for I think basic training. I spent the remainder of the night sleeping in between cars and I think on top of my bags and equipment. When I arrived at my final destination - I was on the frontier between France and Switzerland - I remember how cold it felt as I got my bike out of the baggage car and started to pedal down the road. It was beautiful. For a Texas boy - the mountatins were a welcome change and I was looking forward to an adventure which I was sure would unfold as I headed down the road. O.k., so the paradigm is this - when I would arrive somewhere, it didn't really matter where - inevitably curiousity got the better of the local townspeople and eventually someone would come up to me and ask me where I was from and where I was going. And I would pull out my map and tell them where I had just come from and point at the next small town on the map and then what would happen next - seemed to happen almost every time I stopped somewhere, anywhere, it didn't seem to matter where. I would point with my finger and tell them that this is where I would like to go and they would begin to explain why I shouldn't go there because the people were not so friendly and I should maybe go this other route and I would find much friendlier people along that way. And you know, I would thank them for their suggestions and then head on down the road in the direction that I had originally decided. And my little drama would play out again and again and I would meet the friendliest people and they would always show their concern for my welfare and tell me what was best for me and I had the most wonderful experience over a month and a half. And to this day, I find myself in the same situation all the time - heading out on a lark and not having any particular destination in mind and always coming across the good samaratin who wants to encourage me to go here or there to avoid any problems and the "bad" people - not that I haven't encountered a few not so nice people in my travels, but generally I have a splendid time on my journeys because it isn't always the destination but the actual journey that is what life seems to be about. pogoboy
  20. pogoboy

    The dreaded phantoms

    Hey greyhoundgirl, This is my second time trying to type this message. My pc is going kaput and just erased everything so here goes again... There's a post in this section, "Preventing Phantom Pain, The Best Advice I Ever Received," by Linda Holt. You might want to take a look at that. Post-amputation, I don't know that much about nerve blocks, even though I have considered having one done in the past but at this point still haven't after twenty years. I have several friends who are are spinal cord injuries and when you don't have any sensation - there's a whole lot more that can go wrong so consider your options carefully. Depending on what they use and/or how much they use to dull the nerve - ask your doctor what are the potential side effects. Skin breakdown and ulcers can become an issue, not to mention circulation if you permanently deaden the nerves I would guess. Good luck with your choices and I hope you find the right solution that works best for you! pogoboy
  21. pogoboy

    The dreaded phantoms

    Dear GreyhoundGirl, (Developing good habits early on and the way you view your phantom sensations may be a good start to coping and putting things in perspective that may lead to some relief.) Not all of the sensations are bad or terrible, right? You might start with trying to reclassify what you call these sensations and tell others - especially those closest to you so that they can be more supportive. As I mentioned before - to find a way to be positive and avoid the negative - even in something as basic as what you call it - leads to better coping on a conscious and semi- or unconscious level. Phantom sensations come in all shapes and sizes and hopefully over time it gets better. Being a relatively new injury, (you,) I don't believe there is any right or wrong and you own your sensations (including the more painful ones) that your doctor(s) can't possibly understand without being an amputee him or herself. I know it hurts and for most of us, it's a difficult journey to find the right medication and/or methods to make it more tollerable. Be very careful with the narcotics and stronger medications as they offer some relief in the beginning, but as time goes on - you may develop a tollerance and they may become less effective as the pain continues to become more of a nuisance or worse. There's all kinds of things that you can do to preoccupy your mind, work, play, listening to music, biofeedback - exercise, especially things that tend to be rhythmic. Also eatting good healthy food and staying hydrated may help. Seasonal changes, stress - (emotional and physical) will definitely affect you as well. As an amputee, we tend to have to work harder physically so already we are taxing ourselves more than the average AB, (able-body.) This might not be helpful at work, but at home you might try alternating heat and cold to the area. I notice sometimes in the area of my amputation I get spasms and I can feel the muscles tightening up. For me I use lots of ice massages and/or if it's really bad - I wrap a cold pack and place it as near the area of "discomfort" and pray for the best. Sometimes the best thing to do is literally to go to bed, even if you are not going to get any quality sleep and try to get as comfortable as possible and wait it out. I know this means anything from a few hours to days especially in the beginning. In a way, I was lucky as I remember in the early years I use to get optical migraines just before a bad bout of chronic pain kicked in and I would try to find someplace quiet and dark to rest. I think I may have mentioned it's been a little over twenty years for me and one of the reasons for me to have my leg amputated was to try to manage my chronic pain better. (My reasoning was - all the damage that was done due to the surgeries and artifacts - (metal plates and screws that were holding me together,) might elliviate my pain if I had the limb removed.) I don't have any scientific proof for this - but I do believe that our brains try to send electrical impulses to the limb (or limbs) that was removed and maybe somehow or another all that electricity stores up and gives us those jolts we experience from time to time - I don't know - but I try to listen to my body and understand what is going on so that I may maintain a better quality of life. I hope this helps a little and just remember that you are really stronger than you realize or think that you are and it will get better! Sincerely, Mario
  22. pogoboy

    New here and wanted tell my story, very long post

    Dear Greyhoundgirl, I wanted to share with you that I too am a survivor of cancer - clear cell chondrosarcoma and it's been over twenty years and I am very much alive and still kicking! I am sorry to hear about your trials with your misdiagnosis and diagnosis and surgery following. Yes, it's pretty serious when they tell you that radiation or chemo won't help. You can't underestimate the power of positive reinforcement and anyone or anything negative around you - find a way to paint a smile on it, try to be understanding, but assertive when it comes to bad bedside manners - whether it's your family, friends, or your caregivers. You deserve the best that life has to offer! I lost my leg (hphd) - and it was a long & drawnout process, but I'm much happier now and I am very active in sports and like to encourage others to exercise and maintain a healthy lifestyle. If there is anything I can do to help with info -please don't hesitate to contact me. I noticed someone included a link to the hphd site. It's a great site with lots of very supportive people. Take care, Mario alias: pogoboy