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Chrissy

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Everything posted by Chrissy

  1. Chrissy

    ACA Conference 2015-Tuscon

    Hi Cheryl and Higgy, Yes, everything with the room was worked out. The Amputee Coalition was incredibly helpful! Looking forward to my first Conference and meeting both of you in Tucson!
  2. Hi everyone, I was wondering if anyone here was going to the ACA conference in Tuscon, July 23-25? I was thinking about going and have just started to look into it but it seems very disorganized. I was curious first to see if I could get a hotel room at the JW Marriot where the conference is being held. They have a link on the ACA website that leads to a special page on the Marriot website for the conference. I thought it would be easy to just book the room online, but it said there was nothing available. After numerous calls to the Marriot by myself and my sister, several people at the Marriot had no idea that the conference was taking place. Another couldn't get into the computer program for the conference. Then I was told twice that I could no longer get the ACA rate of $114 a night. They said there are plenty of rooms available in the hotel, but none left at the ACA rate except for one night, the 25th. That didn't make sense at all since the ACA website says the rate is available until June 30th. It just seems like it's too frustrating to try to put the trip together to be worth it.
  3. Chrissy

    ACA Conference 2015-Tuscon

    Thanks Cheryl! I sent you a PM.
  4. Chrissy

    HD amputee

    Hi Charu, Welcome to the forum! I haven’t been here in quite a while but I did see your post and your message. It is a pleasure to see another hip disarticulation amputee on the board. Yes, we are rare! That is one of the reasons I haven’t been on the forum much. It will be 6 years since my amputation on February 10th. I was 42 years old when my leg was amputated and I am now 48. I certainly respect your decision to not use a prosthetic. It is a very personal decision and especially for hip disarticulations, it can be a very challenge process to use a prosthetic leg. And I completely understand your reasons why. I almost made the same decision because I had walked on crutches for 15 years prior to my amputation and I had become so good at walking on them. It just seemed so easy just to keep using crutches. I do use a prosthetic leg now, but it is not always easy. I do enjoy the liberation of being out of my leg and walking on crutches, but I also enjoy being able to use my prosthetic and have the freedom from the crutches. For me, there are advantages and disadvantages to both worlds. If you feel more comfortable in not using a leg, then by all means that is that is what is best for you. The most important thing is for you to be happy, healthy and cancer free! But I would encourage you keep an open mind for the future. You are still so very young and there are so many new advancements in hip disarticulation prosthetics that have come out just in the past 6 years since my amputation. They are becoming more comfortable and less tiring to use. Your young age is definitely to your advantage! Please feel free to private message me again. I look forward to getting to know you Charu!
  5. Cherylm, Thanks so much! I would love to make my socket arty if I could.. I have seen many BK amps with very cool sockets! But unfortunately, even if I wore a short skirt, nobody would see it. Not unless I went around in some Daisy Duke short-shorts! My socket wraps around my waist and abdomen and curves underneath my stump and rear end, so nobody but me sees it. If I wear a skirt or shorts, the only part that is visible is the bottom of the Helix hip, the C-leg and the foot. I started to wear some skirts, tights and ballet flats last year, which was a nice change for me. I never wore skirts or dresses when I was trying to hide my amputated leg. Skirts and dresses actually look better on me now than pants do so and it is something I am not used to having worn nothing but pants for so many years. I just have to get the courage to get out there to the stores to try on different clothes and find what works for me.
  6. I haven't been here for a while and I just found this thread. I definitely can relate to a lot of the frustration you are feeling Zoe. I am a left hip-disartic amputee and I used to live in 3-4 inch stiletto heels before my amputation almost 3 years ago. My dream has always been to get back in heels but it is looking more and more like that is never going to happen. I have had my prosthetic for a little over two years now and I am still trying to just learn to walk properly in flat heels! I have only worn sneakers and ballet flats on my leg. I did get excited last year when I was able to find a pair of flat heeled tall riding boots that I could get on my leg. If I were a BK amp, then there would be hope for heels. But being a HD, I am pretty much out of luck in ever wearing heels again. I also feel very funny wearing pants because my leg does look much thinner than my real leg. I was hoping one day to have a cosmesis, but I have this very wide metal plate between the knee and hip joint because I am too short to use the standard metal piece that Ottobock makes to use between the two joints. Because of the width of the plate, I will never be able to get a covering. I used to love fashion and shoes; now I have no desire so shop. I just wish I could find some clothes and shoes I could look half normal in with my prosthetic on.
  7. Chrissy

    My First Trip

    Hi everyone, I was hoping to get some traveling advice. I am traveling to Florida next month. It will be my first plane trip since getting my prosthetic in Dec ’09 so I am not sure what to expect. Luckily, it is only a short 2hr plane ride to Florida from where I am. I am a left hip-disartic amp with a Helix Hip/C-Leg prosthetic. I am traveling with my family and I was planning to take my leg along. However, my parents have been very vocal that they think I should leave it at home, and just crutch it for the trip as I am very proficient on crutches. They said we will be spending a lot of time at the beach during the day (where I wouldn’t be wearing my prosthetic anyway) and hopefully doing a lot of swimming. They think it would be too much aggravation for me to wear my leg and also have to take crutches along as well. I am a bit nervous about leaving my prosthetic in the hotel room during the day while I am at the beach. My parents also don’t want to deal with my prosthetic going through airport security and the problems we may encounter. Because I am a hip-disartic, my prosthetic straps around my waist so I wouldn’t be able to easily take it off to go through security. I am not sure what airport security will want to do with my type of prosthetic. I would like to take my leg along just to have the experience of what it is like traveling with my prosthetic and become comfortable traveling with it. Just wanted to get some opinions and what I might face at the airport if I do decide to bring it along. Thanks! Chrissy
  8. Chrissy

    Swimming Amps....

    Hi Everyone, This is a great thread. I love to swim and I have been an avid swimmer my entire life. I swam competitively in high school and have been swimming laps for exercise for years now. I just got back into swimming again last September for the first time after my amputation. I found that there really wasn't much difference than when I had my leg, which had been useless and unusable for many years prior to my amputation anyway. I don't wear any water leg prosthetic being a hip-disartic. I get to the pool edge with my crutches and leave them against the wall. Then I use the ladder to climb down backwards into the water. I have very strong upper body strength due to the 15 years I spent on crutches full time before my amputation. I just use the ladder hand rails to help lower and hoist myself out of the water mostly with my upper body. I just always have to be cautious walking with my crutches on the wet pool deck. -Chrissy
  9. Chrissy

    My First Trip

    Just wanted to say thanks to everyone who replied for all your helpful advise! I just got back from my trip on Thursday night and I did end up taking my prosthetic along and very glad that I did. I had a very good experience. Everything went incredibly well on both the going and return flights. No problems or hassels at all. Both times they brought me to the front of the security line immediately. I was given a quick pat-down and my prosthetic swabed, then I was on my way. It didn't take more than five minutes and the TSA staff in both the Philly and Florida airports were very professional and efficent. The TSA person in Florida even commented to me "you have a really nice prosthetic!" I guess she has seen it all!
  10. Chrissy

    UK Hip Disartic / HP Amputees FYI

    Hi Harpoid, Wonderful idea! I just sent a request to join the group. I am a left hip disartic (since Feb 2009) with a Helix Hip/C-leg from the US. I do share your experiences that there is not much information or support for hip and hemi amps. Even on this board, there are not that many of us here. Hopefully it will become an active place for us to share stories, information and offer support. Thanks so much for you efforts! -Chrissy
  11. Chrissy

    Boots

    I thought I would revive this thread since the winter months are apon us. This is my second winter with my hip-disartic prothestic. Last winter I wore only sneakers as I had just received my leg and was still getting used to it. During this past spring/summer I ventured into ballet flats and this winter I decided that I wanted to try to get a fashionable pair of flat "riding" style knee high boots. I really didn't think it was going to happen with my type of prothestic. I picked out a great pair I liked on-line. Since my prosthetic straps around my waist there was no way I could take my leg off to try them on at the store unless I went into a dressing room! They finally arrived and the other night I sat down prepared for battle to try to see if I could get them on my leg. If not, they were going to be returned. I had ordered up a half size from my normal shoe size. I put a thin knee-high stocking over the foot to help the boot slid on. After about 10 minutes of work with a long handled shoe horn-Success!! I had it on. It was a very exciting moment and I can't wait to wear them.
  12. Chrissy

    Strange feelings about my leg

    Thanks everyone who posted and sent private messages, it really meant a lot!! There is such amazing support on this board! I am definitely going to go back to my prosthetic when it comes back. I know I have to give it a better chance. I have no idea what will happen from there, or how I will feel. All I can do is follow my heart and just go with what feels right for me in the end.
  13. Im not sure what to make of how I am feeling right now. As some of you may know, I have been a left Hip-Disartic amp for a year/9 months and have had a Helix Hip/C-leg prosthetic since last Dec. I have been without my prosthetic for the past three weeks. It is currently with Otto Bock having a new replacement socket put on as well as to fix problems that have arisen with the Helix Hip. So I am back to where I was for the 15 years prior to my amputation, which is walking full time on crutches, which I am very proficient at. It was a very rough summer with my prosthetic. The extreme, record breakage hot weather that we had where I live made wearing my prosthetic very uncomfortable. In addition, because of weight loss and shrinkage in my stump, my socket had become increasingly too big for me, and the ill-fit was really affecting my control of the prosthetic and my gait. I was becoming very frustrated and discourage about my prosthetic and whether I wanted to continue using it. Instead of providing freedom, I was feeling like my leg was holding me down. I had so many hopes and dream for my new leg; to be able to walk without unaided, to have a more normal appearance than I did with my shriveled up, diseased leg. So far, none of those dreams had come true. My family and friends have always seen me as someone with so much strength and courage and they always believed that if anyone could make this prosthetic work and do great things with it, I could. I feel right now like I have let them down. I was surprised to find when I gave my leg back to my prosthetist three weeks ago to send to Otto Bock, I felt relieved that it was gone. It was like a weight, literally and emotionally, off my back. I felt like myself again being back on crutches. Honestly, I am much more mobile, agile and quick on my crutches than I ever was with my leg. I dont miss it a bit, and I am not feeling any anxiousness or waiting with baited breath to have it back. So now I am faced with some very uncertain feelings about my future with my prosthetic. I had waited so long after my amputation to be able to have it. I went through a long healing with my stump after a severe reaction to the Vicral sutures used in my surgery. It was a long fought battle with my insurance company to be able to acquire the new Helix Hip and I am very fortunate to be able to have this new technology. I am feeling very guilty that I feel so happy right now without it! Perhaps it is all my own fault that I had such high expectation for what could be with my new leg and I wasnt being realistic. I am not sure where to go from here. Perhaps wearing a prosthetic is not the best thing for me and I would happier just being an amputee on crutches. Maybe I just need to give myself more patience and keep persevering with it after I get it back but I dont know if I have the determination to do that. I am very scared right now I just feel like giving up the leg all together. -Chrissy
  14. Hi Jane, Welcome to the forum! I have a similiar problem and I wish I knew what to say. I am a left hip disarticulation amputee (as of Feb '09) and I am even shorter (4'10)! I have only had my prosthetic since last Dec and have a Otto Bock Helix Hip and C-leg knee setup. With my short stature, they were barely able to fit the hip and knee in the prosthetic and we couldn't use the usual metal piece that would normally go in between the hip and knee to off-set the knee back in line with the rest of the leg. All Otto Bock was able to do was to place a rather wide flat metal plate between the hip and knee instead. The aesthetic problem this caused is that the knee juts out a few inches past the actual prosthetic, which makes it look rather strange, especialy when I have pants on. It looks like I have a mechanical claw for a leg! My prosthetist tried experimenting with moving the knee father back a bit on the metal plate so it wouldn't stick out as much. However, this completely threw off the C-leg's weight alignment and stability and I was falling constantly so we had to move it back where it was. Of course, this is just a aesthetic issue and function is most important, but it really bugs me!!!! I completely understand how you feel. I am faced with a similiar situation with the possibility of giving up my new Helix Hip that I was so fortunate to be able to have and going back to the conventional, traditional hydraulic hip, which would give me a more streamline prosthetic but I would loss the functionality benefits that the new Helix Hip provides, which is a much smoother and more natural gait with much less "hip hiking". Yes, I also feel like I am being penalized for being short! I eventualy would like to have a cosmesis made for my leg, but that isn't going to be impossibe the way my leg is now with the wide metal plate. I am in the process of having a new socket made right now and my prosthetist is going to try working with Otto Bock to come up with some way to redesign my leg so it is a more natural shape but they are not sure there is much they can do. The Helix Hip is very new and Otto Bock has never faced this situation with someone as short as I am. Best of luck and keep us posted! -Chrissy
  15. Chrissy

    Phantom limb pain

    Hi Mikeybucs, I am definitely feeling for you! I am sorry you are dealing with the phantoms. They are not all in hour head!! My phantoms started about a week after my hip disarticualtion amputation. I also thought I was going to avoid them. It was very similar to what you have described; these intense electrical shocks going through my phantom foot. I also couldn’t understand at first why I was feeling it in my foot, which had been the least troublesome part of my diseased former leg. I had always had the most pain in my hip and knee. From what I have read it seems to be a very common place where amputees feel the phantom pain. It felt like my foot was being tazored every few seconds. I had never felt anything like it. At night I would massage my stump and that would help a little. I started going to a pain management doctor who started me on 2400 mg of Gabapentin per day, along with the narcotic Dilaudid. It did help somewhat but still; the pain was very hard to deal with. I was up all night every night and hardly slept for the first three months after my surgery. The nights were the worst and I would just try to keep my mind occupied though the night with movies, music or the Internet. Then I would catnap a little during the day. Eventually they did start to lessen over the next six months, and I was slowly able to decrease the dosage of the meds. I finally was able to stop the Gabapentin this past March, a month after my one year amputation anniversary. I have been slowly been weaning myself off the Dilaudid as well and hope to be off that by the end of this month. It has been a very slow process but now I can comfortable live with the little phantom pain I still get; which is some burning in my stump at the end of the day and the occasional shock. I also think that finally starting to wear a prothestic in Dec helped a great deal with desensitizing my stump. I have started taking Hypericum Perforatum (St. John’s Wort) and it has proven helpful for the mild pain I still have. It is a holistic alternative you may want to try as well but I would check with your doctor for interactions with any medicines you take now. Best of luck and I’m glad to hear that everything went well with your surgery and that you feel confident that you made the right decision. The phantom pain will pass in time.
  16. Chrissy

    Phantom Pain Treatment

    Hi Captain KB, Sounds interesting. I would definitely be interested in hearing if this worked for you and gave you any relief. Best of luck with it. I also tried the Lidocaine patches last summer for awhile, but they did absolutely nothing! Having it injected at the nerve might make a difference. I still do get phantom pain though nothing to the extent that I did for the first several months after my amputation last year. I was on a combination of Neurotin and narcotics. Right now I am down to taking a small dose (2mg a day) of Hydromorphone at night for phantoms. I was able to get off Neurotin two months ago. Getting my prothestic in Dec. seems to have helped desensitize my stump and brought a certain degree of relief.
  17. Chrissy

    Hip desarticulation - Pregnance

    Hi Isabel Maria, I just wanted to say WELCOME from a fellow hip disarticulation amputee. It is great to have you here! There aren't too many hip disartics here on the board. Unfortunately I don't have any pregnancy experience to share with you, but it is an issue I have thought about for the future. -Chrissy
  18. Chrissy

    Comments on phantom pain

    A friend of mine turned me on to a homeopathic remedy that has been working well for my phantom pain, which had decreased from severe electrical shocks for months after my amputation to a dull burning tingle. She recommended Hypernicum Perforatum, also known as St. John's Wort, which is a well known homeopathic remedy for nerve pain. It comes in small pellets which I desolve under my tongue. It has helped me to finally be able to completely get off the Neurotin I had been taking since my surgery. It works very well at night to calm my stump so I can sleep.
  19. Chrissy

    Wheelchair Use

    Hi Keith, I have been fortunate that I have never needed a wheelchair. I am a left hip-disartic amp for a little over a year now. I had been on crutches for 15 years prior to my amputation so after the surgery, it was a easy adjustment to continue to walk with my crutches. I have had a prosthetic now since the end of Dec. That is what I wear now during the day with a cane for safety. I usually take it off at night if I am just at home. When I am not on my leg, I am back to my crutches. I still get around better on the crutches right now but hopefully that will change as I get more adjusted to my prosthestic and my goal is to lose the cane and walk with the prosthetic alone. I do have concerns what it will be like as I get older and if I will eventually need a wheelchair. My remaining knee has already started to give me problems and had surgery on it right before my amputation. For now, I am happily avoiding the chair! Have fun in Spain. Sounds exciting!
  20. Chrissy

    Planning for RAK amputation

    Hi Mikeybucs, Welcome to the forum! Glad you found us here. It is wonderful, supportive, informative place. I must say first that I admire you a great deal. I know that what you are going through in not at all easy. You seem to be doing your research and are very level headed and realistic about what you are facing. That is an incredible place to be in this process. We are very similar in our situations. My left hip disarticulation amputation wasn’t sudden and came after several severe MRSA infections. My leg has been worn away from disease for many years and I had been on crutches for 15 years prior to my amputation. I knew eventually the infections would take my life, so after much thinking and soul searching, I knew it was time to let go of my leg. I spent a year talking to different surgeons and prosthetists, weighing my options. I took my time to educate myself and make the right decisions, which sounds like exactly what you are doing. I agree that you may not need all the medications you mentioned, but it is good to know what is available to you. I was fairly comfortable after my surgery with a PCA pump and was up walking on my crutches the next day, so that is definitely possible. I was only in the hospital for 6 days. But shortly after I came home, that is when the phantom pain began. It was very severe for a few months and was put on Neurotin and narcotics. I just had my year anniversary last month and I have mild phantom pain, but nothing like in the beginning. I now only take a small 300mg dose of Neurotin at bedtime where I had been taking over 2400mg per day at the beginning. It worked fairly well for me but some swear by Lyrica, which is another option. I was able to return to work 2 months after my surgery. As for prosthetics, I just started with mine just three months ago. I have a C-leg and it has been working very well for me so far. There is also the Rheo knee to consider as well that has worked very well for many. Take the time to talk to several different prosthetists to find one that you feel comfortable with and who understands and listen to your concerns and issues. Finding a prosthetist that you can relate well to is very important. They are going to be a very vital person in your life for years to come! I don’t regret my decision. So far, some amazing things have happened. I can now walk with only a cane and without crutches for the first time in 15 years and I skied for the first time this winter. You can definitely have a very full and active life after amputation. But in the end, you have to listen to that inner voice as to what the best choice is. I so very much believe in that. For me, I just knew it was time for amputation and I was ready. Good Luck and keep us posted! -Chrissy
  21. Chrissy

    In need of some courage!!

    Jacqui, As for the crutches part, it is simply a matter of adaption, then there is nothing that should stand in your way! I wasn't able to walk on my diseased leg for 15 years before my amputation, and I was on crutches 24/7 for that entire 15 years. It got to the point where there wasn't much I couldn't do on them. I could carry a tray of food up or down a flight of stairs on them! In time, your skill level just naturally increases. When my leg was finally amputated, there was little change between walking on crutches with two legs, and with one. I just had to get used to balance without that weight on my left side, but that came very quickly. I was even able to forgo rehab time after my amputation surgery hospitalization because I already so skilled on crutches, they just let me go home. Now when I am not in my prosthetic leg, I am on my crutches and have been very fortunate that I have never had to use a wheelchair.
  22. Chrissy

    In need of some courage!!

    Hi Jacqui, Welcome to the forum! I think Shane had the right idea in that you have to focus on the wonderful things ahead after your amputation. I dragged around my shriveled, diseased leg around on crutches for 15 years. The doctors had been advising me to have it amputated for years but I just couldn’t do it. I was terrified! It took years of pain, infection and numerous surgeries to finally come to the point when I was ready to let my leg go. Obviously, something inside you came to that same place as well. What pulled me through the year that I took to prepare for my amputation was just focusing on what I would be able to do after my leg was gone that it had kept me from doing. I got so excited just thinking about them. Just picture them in your mind. I kept thinking about the new life that was ahead of me. It was going to be my rebirth! It has been a year since my amputation and slowly, those things that I dreamed of doing are beginning to happen. Letting my leg go was like releasing a weight I had carried on my back for far too long. I am now walking without crutches for the first time in over 15 years. Two weeks ago, I went skiing for the first time, something I had never been able to do because of my fragile leg. I ask myself now why didn’t I do this sooner! Oh yes, and don’t forget the shoes! While I am still dreaming getting back in my high-heels with my new leg (and I will!), just think of all the cute flats that you will be able to wear this summer! It won’t be easy. It will take time, hard work and much patience, but it sounds like you are ready for this new chapter in your life. It is not an end, but a beginning! This is one place where you don’t have to put on a brave face. We have all been through what you are about to face and know what that fear and uncertainty feels like. Stay strong! -Chrissy
  23. Chrissy

    Just can't get motivated.

    Hi Ed, I just wanted to see that I know very much how you feel. It is hard not to feel discouraged at times. I have had my leg for only two months now. It really was a shock to me to find that once I got home from a very positive experience at the rehab hospital for my prosthetic training, I crashed emotionally. I felt down, I felt depressed. It just hit me that this huge 13lb piece of machinery was going to be part of me for the rest of my life. It has taken much more emotional effort than I ever expected to try to make it part of my normal existence. I thought I would just come home, be excited and life would just be wonderful with my new leg! Not so easy! It has been a struggle to get used to the day-to-day of putting my leg on every morning. I am a hip disartic so I have a fairly large, cumbersome prosthetic to strap around my body. We have had a ton of snow here this winter, and there were many days when I was snowed in the house that I just felt like leaving the leg on the floor and just not bothering with it. I thought, “What was the point?” I was having tons of negative thoughts that I would never learn how to use this leg well enough to walk the way I wanted to, without any assistance and with a fairly natural gait. My “down” moment was a month ago, when I took a bad fall with my leg on and gashed my head and had to get 7 stitches in my scalp. I had taken a bad step on my prosthetic and the knee bent on me. I was ready to give the leg up, fearing that I would just become too afraid of it. I was just going to put it in the closet and forget about it. But two days later, I was back in outpatient therapy. So far, I have kept pushing on. It has been a day to day struggle, and that is all you can ask of yourself, is just to get through the day you are in, and to put your leg on for that day. Don’t look to far ahead, it just becomes too daunting. You have to take it in small steps. It isn’t easy, and it doesn’t come naturally. But it does get better. I am becoming more comfortable with my leg and it is beginning to feel more a part of me and my everyday life. I am already down to walking with just a cane and have starting walking without any assistance in therapy. Have faith that you will get where you want to be in time. It will definitely be worth the work! You have a great goal to look forward to!! Get ready for that trip and some fishing. You can do it! Let that motivate you to put that leg on every morning. Think of the fish that are waiting! I am very much looking forward to seeing photos of you on your trip having the time of your life. Stay strong! -Chrissy
  24. Today marks one year since the hip disarticulation of my left leg. It wasn’t sudden, or unexpected. My leg had been deteriorating from disease since I was 4 years old. My amputation was my choice and I spent a year planning it. I thought that I would feel sad today, that somehow this day would be upsetting. But none of those emotions have come. This morning I looked at some photographs that my sister took of me in the hospital as we were all waiting for me to be taken to the OR. I was smiling. It shocked me to see how shriveled and dying my leg was. Looking back, I am amazed to see how much at peace I felt that day with my decision. It was a long time coming, and I had come to a place of acceptance. I was ready to let my leg go. There was a great deal of hope in that hospital that day. It was going to be a new beginning for me. The beginning of not having to fight constant MRSA infections, the beginning of not having to endure pain in that leg anymore, the beginning of being able to walk without crutches for the first time in 15 years and doing things I was never able to do because of my fragile leg. Now a year later, I am not quite there yet, but I am on my way. I still have phantom pain. My leg is gone but still very much there in the sensations I still have of it. It was a long road of healing and I received my prosthetic just 6 weeks ago. I am already walking with only a cane and starting to take my first wobbly steps in physical therapy without any assistance. The past year has been more challenging than I ever expected, but also filled with love and inspiration that I never expected either. I have met some amazing people along the way the past year and have been in awe of them. I have also learned a great deal about myself that I never knew. Something inside me will always miss my leg; it was a part of me, a part of who I am. But I don’t regret my decision. Next weekend I am going on my first ski trip ever and I look forward to what the next year will bring with my new leg. -Chrissy
  25. Chrissy

    Stump Nicknames??

    Stumpy. I know, not very original.
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