Comments for sweetaffliction http://www.sweetaffliction.com Wed, 10 Mar 2010 00:53:28 -0700 http://wordpress.org/?v=2.8.4 hourly 1 Comment on Lessons on Prophylaxis by luke zankich http://www.sweetaffliction.com/recentposts/lessons-on-prophylaxis/comment-page-1/#comment-235 luke zankich Wed, 10 Mar 2010 00:53:28 +0000 http://www.sweetaffliction.com/?p=614#comment-235 I am 39 and severe. Obviously growing up severe without prophy has now caused a life time of pain and agony. So parents keep your kids juiced up, keep them exercising. I only have one fused ankle and very little other joint damage and I attribute this to a life time of staying fit which strengthens joints and 'hardens' muscles. and just recently started an every other day prophy dose. One thing I learned quickly was that the prophy dose was a little on the low side. I asked doctors and the truth came out that when they come up with a prophy dose they only are looking to keep you from spontaneous bleeds, so only up your factor level to around 40%. This I found for me was not enough to stop bleeds given my extremely athletic lifestyle. I got them to up my prophy dose to the 70% level. Now I work out hard. Yoga 3 days a week combined with hard weight lifting and lots of wrestling on the floor with kids, and no more bleeds. My advice is to do prophy and pay attention to the dose, it could be too low if you are actively hurting yourself all the time. :) I am 39 and severe. Obviously growing up severe without prophy has now caused a life time of pain and agony. So parents keep your kids juiced up, keep them exercising. I only have one fused ankle and very little other joint damage and I attribute this to a life time of staying fit which strengthens joints and ‘hardens’ muscles. and just recently started an every other day prophy dose. One thing I learned quickly was that the prophy dose was a little on the low side. I asked doctors and the truth came out that when they come up with a prophy dose they only are looking to keep you from spontaneous bleeds, so only up your factor level to around 40%. This I found for me was not enough to stop bleeds given my extremely athletic lifestyle. I got them to up my prophy dose to the 70% level. Now I work out hard. Yoga 3 days a week combined with hard weight lifting and lots of wrestling on the floor with kids, and no more bleeds. My advice is to do prophy and pay attention to the dose, it could be too low if you are actively hurting yourself all the time. :)

]]> Comment on Hemophilia Fitness routine by luke zankich http://www.sweetaffliction.com/recentposts/hemophilia-fitness-routine/comment-page-1/#comment-234 luke zankich Wed, 10 Mar 2010 00:27:17 +0000 http://www.sweetaffliction.com/?p=309#comment-234 I am about your age, I'm 39. I have severe hemophilia f-8 and have been working out my entire life. I did workout growing up in the 70's. Ran long distance after recovering from 1st ankle surgery. Even wrestled for a season until that darn ankle totally crapped out. I found that biking is definitely a great workout for those with hemophilia,until the knees start to go, which my left has now. Being a very active guy no matter the pain has kept me strong, and the 'hardening' of my body from working out has kept me from many bleeds. My new passion is YOGA . Try it. It is incredible what it has done for my body. The combination of strength and stretching has allowed me to feel better now at 39 with a fused ankle and pains everywhere, than ever before. I actually do a hard 10 min on the stairmaster before my yoga workouts to turn the yoga workout into a good cardio workout as well. I am about your age, I’m 39. I have severe hemophilia f-8 and have been working out my entire life. I did workout growing up in the 70’s. Ran long distance after recovering from 1st ankle surgery. Even wrestled for a season until that darn ankle totally crapped out. I found that biking is definitely a great workout for those with hemophilia,until the knees start to go, which my left has now. Being a very active guy no matter the pain has kept me strong, and the ‘hardening’ of my body from working out has kept me from many bleeds. My new passion is YOGA . Try it. It is incredible what it has done for my body. The combination of strength and stretching has allowed me to feel better now at 39 with a fused ankle and pains everywhere, than ever before. I actually do a hard 10 min on the stairmaster before my yoga workouts to turn the yoga workout into a good cardio workout as well.

]]> Comment on Reflections on My knee replacement by Trish Taychouri http://www.sweetaffliction.com/recentposts/reflections-on-my-knee-replacement/comment-page-1/#comment-233 Trish Taychouri Fri, 05 Mar 2010 12:59:01 +0000 http://www.sweetaffliction.com/?p=489#comment-233 G'day from Australia! What a great website! Makes you feel like your not alone in the world facing our haemophilia challenges. My husband Alex has Haemophilia Factor IX (we spell it with an "E" in Oz]Ourlatest challenge is a knee replacement. He had this done 10 days ago and it has been a real challenge for him. We never know what to expect the next morning. He has had quite a few bleeds which were to be expected, I mean he is using muscles he hasn't used in about 2 years. We made the decision to have the replacement because Alex is only 35 years old and he was missing out on so much. We have two young girls who couldn't even go to the park with their dad or ride a bike with him. His sleepness nights were spent on painkillers and even they did'nt work for him. So it was either keep putting up with the pain or jump in the deep end and hope for a good recovery and a change in lifestyle. I hope his knee behaves so he can get on with the important things in life - playing his drums, fishing in his beloved boat and playing with his kids. As the days go on I will try to get back and let you know how he is getting on. FOR ALL YOU WIVES, GIRLFRIENDS & MUMS OUT THERE HANG IN THERE!! DON'T FORGET TO LOOK AFTER YOURSELF TOO! WE NEED PLENTY OF REST TOO OR WE WILL END UP GETTING RUN DOWN & WON'T BE ANY USE TO OUR BOYS. [DO I SOUND LIKE A MUM OR WHAT?] P.S. YOUR ROB THOMAS IS A STAR!! WE SAW HIM PERFORM IN FEBRUARY. FANTASTIC!!! G’day from Australia! What a great website! Makes you feel like your not alone in the world facing our haemophilia challenges. My husband Alex has Haemophilia Factor IX (we spell it with an “E” in Oz]Ourlatest challenge is a knee replacement. He had this done 10 days ago and it has been a real challenge for him. We never know what to expect the next morning. He has had quite a few bleeds which were to be expected, I mean he is using muscles he hasn’t used in about 2 years. We made the decision to have the replacement because Alex is only 35 years old and he was missing out on so much. We have two young girls who couldn’t even go to the park with their dad or ride a bike with him. His sleepness nights were spent on painkillers and even they did’nt work for him. So it was either keep putting up with the pain or jump in the deep end and hope for a good recovery and a change in lifestyle. I hope his knee behaves so he can get on with the important things in life – playing his drums, fishing in his beloved boat and playing with his kids. As the days go on I will try to get back and let you know how he is getting on.
FOR ALL YOU WIVES, GIRLFRIENDS & MUMS OUT THERE HANG IN THERE!! DON’T FORGET TO LOOK AFTER YOURSELF TOO! WE NEED PLENTY OF REST TOO OR WE WILL END UP GETTING RUN DOWN & WON’T BE ANY USE TO OUR BOYS. [DO I SOUND LIKE A MUM OR WHAT?]
P.S. YOUR ROB THOMAS IS A STAR!! WE SAW HIM PERFORM IN FEBRUARY. FANTASTIC!!!

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Lisa Grasshoff http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-232 Lisa Grasshoff Thu, 04 Mar 2010 04:55:01 +0000 http://www.sweetaffliction.com/?p=628#comment-232 Andy, I am so sorry for your loss of Kelsey. The picture of you and Pattie with her is heart-warming and so very precious. My heart and prayers are with you all. Kelsey was a beautiful baby girl and very special. It's hard to find words of comfort, but know that my family cares about you. You were such an inspiration to Danny and I when we first met you in Dallas, 1991, and we were trying to understand a bleeding disorder and what life would hold for Joshua. You are right, having a bleeding disorder is a blessing, just like Kelsey and how much she was loved. Please take care and I'm sure I will see you at one of the meetings. Andy,
I am so sorry for your loss of Kelsey. The picture of you and Pattie with her is heart-warming and so very precious. My heart and prayers are with you all. Kelsey was a beautiful baby girl and very special. It’s hard to find words of comfort, but know that my family cares about you. You were such an inspiration to Danny and I when we first met you in Dallas, 1991, and we were trying to understand a bleeding disorder and what life would hold for Joshua. You are right, having a bleeding disorder is a blessing, just like Kelsey and how much she was loved. Please take care and I’m sure I will see you at one of the meetings.

]]> Comment on Make Needle Sticks A Treat! by Dolores Mueller http://www.sweetaffliction.com/recentposts/make-needle-sticks-a-treat/comment-page-1/#comment-231 Dolores Mueller Mon, 01 Mar 2010 21:49:46 +0000 http://www.sweetaffliction.com/?p=495#comment-231 I am the mother of 2 adult sons with classic severe factor 8 Hemophilia. David Mueller age 44 and Jimmy Mueller age 48. I was also the sister of a brother who is deceased as well as an uncle, a cousin and a second cousin. I have never breathed a breath without hemophilia in my live and I soon will be 76 years old. To the new generation I would like to say how blessed you are to have such new and wonderful treatments. Your quality of life will surley be so much better and less painful than those who have come before you. I was blessed to have a wonderful loving and supportive husband. We have been married for 52 years. In my generation ir was almost unheard of not to have a divorce in the family and I myself was the product of divorce because of the stress of the illness. As you all know it takes special parents to take care and treat these very special and loving sons. Sure I have been angry, sad and fearful. That is only human nature. On day I realized that I had to give up the control that I never really had and put my faith and trust in God. We all are who we are as a result of living with hemophilia and hopefully we are better persons because of it. I could go on and on about sleepless ntights, trips to the hospital and all the sadness but I choose to dwell on my wonderful sons and my 3 presious grand daughters who are also carriers. Life is good and someday this illness will be eraticated and the next generation will be so very blessed I am the mother of 2 adult sons with classic severe factor 8 Hemophilia. David Mueller age 44 and Jimmy Mueller age 48. I was also the sister of a brother who is deceased as well as an uncle, a cousin and a second cousin. I have never breathed a breath without hemophilia in my live and I soon will be 76 years old. To the new generation I would like to say how blessed you are to have such new and wonderful treatments. Your quality of life will surley be so much better and less painful than those who have come before you. I was blessed to have a wonderful loving and supportive husband. We have been married for 52 years. In my generation ir was almost unheard of not to have a divorce in the family and I myself was the product of divorce because of the stress of the illness. As you all know it takes special parents to take care and treat these very special and loving sons. Sure I have been angry, sad and fearful. That is only human nature. On day I realized that I had to give up the control that I never really had and put my faith and trust in God. We all are who we are as a result of living with hemophilia and hopefully we are better persons because of it. I could go on and on about sleepless ntights, trips to the hospital and all the sadness but I choose to dwell on my wonderful sons and my 3 presious grand daughters who are also carriers. Life is good and someday this illness will be eraticated and the next generation will be so very blessed

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Andy Blackledge http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-230 Andy Blackledge Sun, 28 Feb 2010 18:05:24 +0000 http://www.sweetaffliction.com/?p=628#comment-230 Dear Andy: My deepest condolences on your family's loss. Words fail me in times like these. They ring hollow, and are never enough to encompass the wide-ranging emotion of grief. Know that you and your family are loved, and that Kelsey will always be with you. Andy Blackledge Dear Andy: My deepest condolences on your family’s loss. Words fail me in times like these. They ring hollow, and are never enough to encompass the wide-ranging emotion of grief. Know that you and your family are loved, and that Kelsey will always be with you.
Andy Blackledge

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Alma Carnicle http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-227 Alma Carnicle Thu, 25 Feb 2010 21:58:54 +0000 http://www.sweetaffliction.com/?p=628#comment-227 Andy, I'm so very sorry for your loss of your precious baby girl. May it comfort you, somehow, to know that she is in heaven now; and no longer suffering and enduring all that she had to endure during her short time here. My prayers are with you and your family during this very difficult time Andy,
I’m so very sorry for your loss of your precious baby girl. May it comfort you, somehow, to know that she is in heaven now; and no longer suffering and enduring all that she had to endure during her short time here.
My prayers are with you and your family during this very difficult time

]]> Comment on FLYING HIGH WITH HEMOPHILIA by Mackenzie Hahne http://www.sweetaffliction.com/recentposts/flying-high-with-hemophilia/comment-page-1/#comment-226 Mackenzie Hahne Thu, 25 Feb 2010 02:01:34 +0000 http://www.sweetaffliction.com/?p=608#comment-226 This is very inspiring! I am Colleen Coadic's cousin! My Uncle Steve (who she talked about in the letter) is a pilot with hemophilia as well (severe). Very proud!! <3 <3 Mackenzie This is very inspiring! I am Colleen Coadic’s cousin! My Uncle Steve (who she talked about in the letter) is a pilot with hemophilia as well (severe).

Very proud!!

<3 <3
Mackenzie

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Jeff Harper http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-225 Jeff Harper Tue, 23 Feb 2010 19:52:19 +0000 http://www.sweetaffliction.com/?p=628#comment-225 To Andy, Patti and Keeton: My deepest condolences to your family. I had no idea when I called today, and had not been told of your darling daughter/sisters struggle. I am so terribly sorry to hear of Kelseys passing. I know she fought hard to stay with us in this world, but trusting there is comfort knowing that there was a higher plan, and she is in Gods loving arms now . Heaven did indeed, need more Angles. Your friend, Jeff Raleigh, NC To Andy, Patti and Keeton:
My deepest condolences to your family.
I had no idea when I called today, and had not been told of your darling daughter/sisters struggle.
I am so terribly sorry to hear of Kelseys passing.
I know she fought hard to stay with us in this world, but trusting there is comfort knowing that there was a higher plan, and she is in Gods loving arms now .
Heaven did indeed, need more Angles.
Your friend, Jeff
Raleigh, NC

]]> Comment on Sweet Kelsey Girl August 4, 2009 – February 20, 2010 by Axel Freese http://www.sweetaffliction.com/recentposts/sweet-kelsey-girl-august-4-2009-february-20-2010/comment-page-1/#comment-224 Axel Freese Tue, 23 Feb 2010 18:57:26 +0000 http://www.sweetaffliction.com/?p=628#comment-224 Andy & Family - What a blessing and challenge you have all been through. Little Kelsey was your gift, and sadly she was only with you physically for a short time, but she will live on forever in your hearts. I know that you all will treasure that remembrance. My condolences to you all. Be well! Axel Freese Andy & Family -

What a blessing and challenge you have all been through. Little Kelsey was your gift, and sadly she was only with you physically for a short time, but she will live on forever in your hearts. I know that you all will treasure that remembrance.

My condolences to you all. Be well!

Axel Freese

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