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Karen

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Everything posted by Karen

  1. Karen

    ACA Conference 2006 Review

    I noticed that sweet familiar face, too! :) Received the magazine early last week (I. live in Florida). Made me misty about the conference......seemed so loooong ago! Once I'm recovered I'll start making plans to attend the next one for sure! XO Karen AKA Orlando, FL
  2. Karen

    I'm Back after Ertl and a few setback

    Oh my gosh, Shane.....you described my leg perfectly - it DOES look like a baby whale!!!! :lol: Yes, I have been through this before, but it was many years ago, and I did not remember, so thank you for letting me know that the swelling/whale look will go away as I begin to walk. If you go on the Ertl website (ertlreconstruction.com) you can find a very detailed description of how the AK surgery is done. Everyone is different, though, so there may be some variations. For example, my surgeon discovered that my adductor muscles were all pulled up and not working. He drilled holes in the opposite side of the femur and sutured the adductor muscles directly to the bone. :o I'll be sure to keep everyone up on my progress. I am amazed at how my muscles are starting to work again. The real test will be when I am fit with a new prosthestis. That process should begin within the next couple weeks. Thanks again, everyone for your support! Karen AKA Orlando, Florida
  3. Karen

    I'm Back after Ertl and a few setback

    Wow. Here I sit at 3am reading all your responses to my note with tears running down my face. I am so touched by your kindness. It is such a comfort to hear words of encouragement from people who have really "been here". And Johnny, I absolutely loved the song....it made me giggle right through my tears! I've been having trouble sleeping at night....especially this week as my husband had to go out of town on a business trip. Tomorrow, I will be 3 weeks post-op and 1 week out of the hospital from the blood clot incident! Although my wound has healed beautifully (thank GOD, I was worried that the blood thinners might affect that), the swelling is still pretty bad. It's so strange to look in the mirror and see that my "new" thigh looks as wide as the one on the other side! I don't remember any of these things from my initial amputation. I was 13 at the time and in total denial......my mom says I wouldn't even look at my leg for almost a month! I am breathing better every day, and the pain in my chest is pretty much gone. Still get breathless and tired out easily, though. My children think it's so funny that mommy goes to bed before they do these days! My wonderful sister has been here the past week to take care of them...and me! She is due to leave next Thursday, August 3rd. We are playing it by ear, but my mom may fly back to help for a few more weeks while I continue to gain strength and HOPEFULLY can start walking again. I am just desperate to get back on my feet! Although I do get the most lovely comments from people re the chic Zebra crutch covers my sister-friend, Cheri sent me! :) So I AM getting better....not as fast as I'd like, of course....but the depression has diminished as my healing continues. Reading all the messages on this board is such good medicine! I love that I can log on at this hour of the night and feel the warmth of you all! Maybe I'll try getting back to bed and wrapping myself up with all these good feelings. Much love, Karen AKA Orlando, FL
  4. Karen

    ERTL

    Thanks so much, everyone! I really appreciate all the good thoughts and prayers. Hubby and I are leaving for Oklahoma City tomorrow...... will (hopefully) return home on 7/10, and I'll check in then. You all are the absolute BEST!!!! XO Karen AKA Orlando, Florida
  5. Karen

    ERTL

    I'm having an AK Ertl procedure on Thursday, 7/6. I'll let you all know how it goes. I know two other AK's who have had the procedure and are very happy.... hoping I'll feel the same way :) Karen Orlando, Florida
  6. Karen

    Everyones story

    Wow, Louise..... what a nightmare you have been living! I can not relate to your experience with the knee surgery and metal allergies as I lost my leg (AK) to bone cancer at age 13, but I can tell you that you have been through the worst of it. When your wound heals and you are able to be fitted with a prosthesis, that should help with the phantom pain. Do your exercises, too. Until then, take one day at a time, and know that there are better days ahead. You've found this forum, and can gain lots of valuable information from the people here. We also give good cyber hugs anytime you need one! :) XO Karen AKA Orlando, FL
  7. Karen

    Travelling with a scooter

    Oops! Sorry about that! Hit that reply button by mistake..... I'm also sorry to hear about your travel "hiccups", Judy. :( I am from the Detroit area originally (my parents still live in Center Line), and I have travelled to/from that airport frequently. My experience is that it just depends on the personnel you encounter....some are friendly and helpful, and some are AWFUL. Unfortunately, I've encountered more of the latter at that airport. I remember one time breaking down into tears when a woman security screener treated me like a FREAK! Another time I was late for a flight and my leg was not having a good day and I could get no one to help me. On the other hand, my experiences at Orlando and LAX airports are always wonderful. Does it have something to do with the amount of travelers....or maybe because they are both vacation destinations??? I don't know, but I definitely believe that the staff at DTW does not compare! My friend Claudia had trouble at the Minneapolis airport with her wheelchair. I was appalled....especially since their TSA people had spent time at our conference! Claudia is a quad amputee, had her legs on but is not able to walk independently yet. When she told them she could not step out of the wheelchair, the security people were very rude and practically made her lay on the ground to check her!!!?? My dad and mom are flying here from Detroit early next month. My dad has a scooter and has made arrangements to take it with him. I'll let you know how his experience is. I'm thinking I better get some info from TSA re what the proper procedure is and what he should expect! I think you should write a letter to Northwest Airlines management....they should be made aware. And I agree with Tammie and Neal, you should be proud of all you accomplished on your own.....I'm so glad you made it to the conference, and I look forward to getting to know you better next year. Hopefully our friend Nann will join us, too! XO Karen AKA Orlando, Florida
  8. Karen

    ACA Conference 2006 Review

    Hmmmmm, Muchly...... I only know the answers to 4 out of 6, and I was at the conference! Definitely have to spend more time with y'all next year! XO Karen
  9. Karen

    ACA Conference 2006 Review

    Cat and Neal said it all..... the ACA conference was an awesome experience, and getting acquainted (and re-acquainted) with the precious people of the HMM forum really made it extra special. Instant rapport and affection all around... and yep, you could "feel the love"! My only regret is that I didn't get to spend much time with everyone. Just like last year, Cheri and I spent a lot of time "catching up" (and maybe a little "picking up" :lol:). We plan on getting together once BEFORE the next conference, so we can spend more time hanging with you all. Thanks, Cat for not going into detail re my "school girl" story .... and to both you and Ruth for sticking around for one (or was it two?) more drinks that night! So many great laughs!!! XO Karen AKA Orlando, Florida
  10. Karen

    New C-Leg

    Hi, I'm going to be getting a new prosthesis later this Summer, and am excited to hear that there is a new generation C-leg coming out!! Mine is almost 6 years old and will need replacing soon. I like the idea of having additional modes and the hand control..... is there any change is the weight or length? I have a long residual limb and it's a challenge to get my knee centers even. I did try the Rheo, and although I liked a lot of things about it, the weight, length (at 5'4" I am barely tall enough) and cosmetics of it turned me off. I have looked on the internet for info on the new C-leg, but can't find anything. Does anyone know when it is going to be released? Thanks! :) Karen AKA Orlando, FL
  11. Has anyone had any experience with the pneumatic microprocessor Seattle Power Knee? A friend of mine is thinking about trialing one (she is a knee-articulate) and her prosthetist has told her all kinds of great things about it... smooth walking, matches you gait, 4-bar knee which can bend 165 degrees and fold underneath itself so good for long limb. Thanks for any info/thoughts/experience you can share! :) Karen AKA Orlando, Florida
  12. Karen

    Four Year Aniiversary of Amputation

    Congratulations, Johnny! I wasn't aware that you were a cancer survivor. And that you've only been an amputee for four years!? You've been such a great contributor and support on the message board, I just assumed you had YEARS of "experience." I've been cancer free for 30+ years (osteosarcoma) and STILL hold my breath while waiting for results of the bone scans I get every 5 years. Thanks for everything..... we ALL celebrate your life! :) Karen AKA Orlando, Florida
  13. Karen

    Help - Need Advice

    Hi, Gaza I went to my prosthetist's office this morning and was fitted with the Rheo knee. I immediately noticed that it moved more freely than the C-leg....especially when changing speeds. And I was even able to take tiny steps without "fighting the brakes" like I do with the C-leg. A very smooth ride!! I walked beautifully with it. However, we weighed my prosthesis, and it was a full pound heavier than it is with the C-leg. I'm a small person (115 pounds) and fit, but not super strong, so I definitely noticed the weight difference. Not so much at first, but when I switched back, the C-leg felt MUCH lighter. Also, the Rheo is very bulky around the calf area, and would not work well with a cosmetic covering. Of course, that's more of a "girl" issue. :) Bottom line, the Rheo walks beautifully and smoothly, and the safety mechanisms step in when needed, but are not overpowering, like with the C-leg. Over time it read my gait and it kept getting better. But I opted not to continue walking in it for the full week offered because of the extra weight and cosmesis. I'm not willing to make those concessions. If a lighter, trimmer version was available, I'd switch in a heartbeat if given the opportunity. Being a bigger, stronger guy and assuming cosmesis is not an issue for you, I believe you'd be very happy with the Rheo. It's definitely worth fighting the NHS for. Go get 'em!!!! Karen AKA Orlando, Florida
  14. Karen

    Help - Need Advice

    Hi, Gaza I don't have any answers, but I do share your frustration. It's hard to find a knee that is "safe" yet good for high level activities. I'm currently wearing a C-leg, which definitely keeps me safe, but also holds me back. My prosthetist has arranged for me to try a Rheo knee for a week (going in next Tuesday), so I'll let you know how that goes. It'll be interesting to see how it compares to the C-leg. I hope you get your situation sorted out soon..... take care! Karen AKA Orlando, FL
  15. Hi, Johnny Please reserve me a spot at the table..... I'm looking forward to seeing everyone! :-) Karen AKA Orlando, FL
  16. Karen

    C-Leg Trial

    Hi, David You've gotten some good feedback. Here's my two cents! :-) I have worn a C-leg for 5 years, and before that used a free swinging hydraulic system by Otto Bock. On the hydraulic knee I would fall from time to time, but the main reason I switched to the C-leg was because I had just given birth to my second daughter, and wanted the stability it offered. I had fallen once while walking with my oldest daughter. Thankfully, neither of us were hurt, but it scared me enough to pursue the C-leg. I walked confidently across uneven terrain, up and down stairs, ramps, etc., with baby in arms after that. I did not like the way the C-leg totally controlled my walking, though.....I still don't. Have people noticed that the C-leg has improved their gait? I don't believe the C-leg really improved my gait...but as someone said in an earlier response, knowing that the C-leg is "there" allowed me to work on improving the gait without worrying about stumbling/falling. I would definitely recommend physical therapy. First you need to make sure your prosthetist has the settings adjusted to your needs. It would be great if he/she could be present during the first session. I do believe the C-leg takes more pressure off my good leg because it does control my walking, and therefore forces me to even out my gait somewhat. Has the C-leg increased how far and how fast you can walk? I would say definitely, YES. I can walk for a much longer period of time without tiring. I notice this alot when I take the kids to Disneyworld (I live nearby). I can walk around all day/night with no problem, where in the past would tire after a few hours....especially in the heat and humidity. Are stairs much easier with the C-leg? I think people can walk down stairs just as easily with the Mauch as I do with the C-leg....same concept of riding it down. Given that I'll also be moving from a SACH foot to a dynamic foot will this increase the difference I feel? In a good way or a bad way? You'll love it. If you're an active person, the more dynamic the foot the better, I say! :-) All this said, I have recently had thoughts about trying another knee system, not to totally replace the C-leg, but to have a second leg which would allow me more freedom of movement when I want it. It's difficult to dance with the C-leg, and when I switch it to free swing it's too unstable. The only thing I use that mode for is bike riding. My "baby" is almost 6 years old now, so I'm not carrying her around, and don't have that worry any more. I'm thinking I'd like a knee that would allow me to change walking speeds more smoothly and go from a walk to a run/jog when I want to. I know some people run on a C-leg, but I can't do it in free swing mode and in regular mode it freezes up on me. I would not totally replace the C-leg, though....would still want to have it for long walks on uneven terrain/ramps. Wouldn't it be wonderful if we could afford to have a whole wardrobe of legs for sports/walking/dress, etc., wouldn't it? Hope I've been able to help in some way. It's a big decision to make, and a very personal one. You're doing a good thing by gathering lots of info in advance. Karen AKA Orlando, FL
  17. Hi, everyone I live in the Orlando area, so have seen quite a bit about this on the News. From what I have heard, her husband gave consent to amputate all her limbs. He said the only chances given were amputate or she dies. Her symptoms started a day after she delivered her baby....a rash on her stomach and terrible pain. Nurses told her her the rash was probably an allergic reaction to the sheets, and stomach pain is "normal" after giving birth! A few days later she was moved to intensive care where I guess they did further testing to determine that she had flesh eating bacteria. She was transferred to another hospital and 12 days after giving birth had surgery to remove all her limbs. It's an awful story. Seeing her on the news with her family....just basically sitting there in a wheelchair while her husband holds the baby and plays with her older son, just breaks my heart. She said she has artificial legs, but can only wear them for about 30 minutes because of pain. It looks like her residual limbs are quite short and scarred....plus the fact that it has only been 8 months since this all happened....so maybe things will improve with time. She does have one arm with an elbow, so maybe that can be fitted, too? The whole situation is just so sad!!!! I know a patient at prosthetist's office who lost both legs BK and both hands/wrists to something similar. Maybe at some point he can go to see her and give her some hope....this guy is amazingly active and self-sufficient. In the meantime, the hospital is getting lots of bad publicity, which they fully deserve. Karen AKA Orlando, Florida
  18. Karen

    With or without cosmetics

    Hello, Dai Every individual is different...... some children will be more self-concious than others. I think the most important thing to do is what you are already doing - accepting him and being proud of him, just the way he is. Your son knows that you love him - covered or uncovered! He will learn from your example. Maybe you could ask your prosthetist if he could introduce you to another family with an amputee child. Or perhaps there is an adult amputee with small children (like me) who could arrange a play date? Ally had a very good suggestion. You could have some fun covers made for his legs..... with dinosaurs, Power Rangers, or whatever else he is into. That, too, might draw the interest of other children and make the limbs seem less scary and more "cool"! Take care.... you're a wonderful mom! Karen AKA Orlando, FL
  19. Karen

    im so scarred

    Hi, Claire I can relate to everything you are feeling and going through. I lost my leg to bone cancer at age 12, and spent most of my teens and 20's keeping it from people....especially guys..... because I was so sure I would be rejected. Thinking back, I have to laugh at how good I was at "hiding" my leg, even in intimate situations! There will be some men who do choose not to date you because of your leg, but that is their loss, and very indicative of a shallow person. I met a few of those in my dating life. But you know, I'm not even sure that's why they stopped calling....sometimes it was probably because I was not honest with them and comfortable about myself. So please, take all the wonderful advice here to heart, and live your life to the fullest! I remember being in therapy and part of a group that met weekly. One day I told them all the story of my amputation and how I felt about it. We had been together for months and no one had mentioned it, including me. I can't tell you how shocked I was that no one freaked out or treated me differently! And then I felt really FREE! I started to be more open about my leg; wearing shorts, etc. Eventually I met the man who later became my husband. He considers me to be a totally normal woman in every way, and says he feels proud and lucky to be with me! And my two little girls also see me as a normal mommy.....they enjoy telling their friends all about my "leggy" and how it comes off and has a robot in it., etc. So that's the secret. Of course, you must mourn you leg, but when you are ready, walk proudly and be free. Hugs to you {{{{{{{{{{{ Claire }}}}}}}}}} Karen :-) AKA Orlando, FL
  20. Karen

    Happy Birthday to mmarie

    Happy Birthday, Marcia! Sounds like you celebrate yours the same way I do.......... all week long! Cheers! XO Karen :-) AKA Orlando, Florida
  21. Karen

    Climate change and prosthetics.

    Hi, all! I moved from California to Florida eight years ago and a lot of trouble transitioning to the new, humid environment. Of course I was also pregnant at the time, so that had something to do with it, I'm sure! But even afterwards, I had tremedous problems with my leg sweating for a few years, and then (I guess) my body finally adjusted. Thank goodness, because before that I threatened my husband daily that I was going to pack up and go back to California, LOL! Karen :-) AKA Orlando, FL
  22. Karen

    Harmoney Unit

    Hi, Ann My CP suggested another thing that might be happening with you is that your limb is getting hung up somewhere in the socket, leaving space at the bottom which the vacuum draws your skin down into. Ouch! Hopefully you will get this all sorted out today! :) Karen AKA Orlando, Florida
  23. Karen

    Harmoney Unit

    Hi, Ann I thought that I needed more space, too, but found I needed just the opposite! ;) Let me know how your appt. goes tomorrow. Karen AKA Orlando, FL
  24. Karen

    Harmoney Unit

    Hi, Ann I am in a vacuum system also (although not the Harmony), and have experienced what you described when the socket was not fitting properly or I had not put it on correctly. There was too much space between the liner and socket which caused my skin to be drawn in to the empty space. Very uncomfortable! My prosthetist had me add socks on top of the liner and that solved the problem until we could make a smaller socket. Karen :-) AKA Orlando, Florida
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