Over coming a demon
We are not in control of things like this, only how we react to them. Food doesnt solve a problem like this, which we know but instinctively still turn that way sometimes. Going for a run doesn't solve it either, but can increase our ability to deal with it.
Thanks for this reminder, Paul.
best of luck going forward in dealing with this. My daughter has a relatively newly diagnosed health issue, and it kills me that i can't do anything about it, but be there for her (she's 20). She's a trooper, tho,and i'm sure you'll teach your daughter that she doesnt have any limitations.
Oh, Paul, I am so sorry to hear about your daughter. I appreciate you posting this, though. We all have psychological demons of some kind. Some are just bigger and meaner than others. Although I would never hav chosen some of the traumatic events that have occurred in my life (including losing my partner because of a drunk driver, being sexually assaulted, and having a brother very surprisingly die of a drug overdose), they have shown me an inner courage and strength that I did not know I had. I have not always dealt with the demons in the healthiest ways (gained 100 pounds in 18 months after one of the incidents), and some of them still hang around despite my best efforts to "exorcise" them.
The important thing, though, for whatever kind of demon people face, is not to give up and to be open to those in your life who love you and who can help support you (and to reach out for outside help if you need it). I am sure that you already know this, but love and caring can provide comfort that food cannot. Let us (me) know if there is anything we (I) can do to help you.
Lora
The important thing, though, for whatever kind of demon people face, is not to give up and to be open to those in your life who love you and who can help support you (and to reach out for outside help if you need it). I am sure that you already know this, but love and caring can provide comfort that food cannot. Let us (me) know if there is anything we (I) can do to help you.
Lora
14 years out; 190 pounds lost, 165 pound loss maintained
You don't drown by falling in the water. You drown by staying there.
Just wanted to shout out and say how amazing your constitution is despite this rough time you are going through. You are an inpiration to me, and I am sure to others.
Keep doing your research, there are so many options now that they didn't have years ago. Don't be afraid to take time for yourself when you need to. I know you talk to family and friends when they have questions or just want to show their support - but make sure to make time to decompress and re-energize.
And as a side note... my hubby is medically deaf.
Sending hugs and prayers your way... Pam
Keep doing your research, there are so many options now that they didn't have years ago. Don't be afraid to take time for yourself when you need to. I know you talk to family and friends when they have questions or just want to show their support - but make sure to make time to decompress and re-energize.
And as a side note... my hubby is medically deaf.
Sending hugs and prayers your way... Pam
My son was diagnosed with autism about 9 months after my RNY and I can honestly say I was devastated ... You need a little time to accept the change of normalcy for your little girl and eating right will keep you well in body while your mind somewhat heals from the news.
Well done on keeping those food demons at bay and NOT going the other way and starving yourself - that seems to be my go-to in times of stress these days and then I end up feeling really crappy!
I'm sure your little girl is lucky to have you as her daddy!
Well done on keeping those food demons at bay and NOT going the other way and starving yourself - that seems to be my go-to in times of stress these days and then I end up feeling really crappy!
I'm sure your little girl is lucky to have you as her daddy!
Proud Feminist, Atheist, LGBT friend, and Democratic Socialist
Paul,
I am so sorry for what you and your family are going through. I know how hard it is when one of our children is affected. You are strong and should be very proud that you are dealing with this while still committing to your healthy new life. One day at a time.
With me, it was the Crohn's that both my kids had. We were still trying to find the right meds when I had my RNY in December. In the same month, both kids started Remicade infusions. My younger son's doctor also kept him on 6MP which combined with the Remicade, has been known to cause an untreatable form of Leukemia in a very small percentage of teenage boys. But, the 6MP will also help your body absorb the Remicade longer and better. My son had not grown in 3 years at this point. 14, still hadn't started puberty and was the 2nd shortest kid entering High School. To make a long story short, my older son was not doing well on Remicade and kept having to go back on steriods. My younger son's knees starting going really bad and was diagnosed with osteochondritis dissecans. In March, first my dog had ACL surgery, then my younger son had micro-fracture surgery. In April, my older son and I were suppose to fly out to Purdue for a college visit, but he'd been having flareups every other week to the point the doc said not only couldn't he fly, but he had to have surgery. So he went in in April to have 16cm of his intestine, 10% of his colon and his appendix removed. 2 weeks before AP tests and 6 weeks before HS graduation. I was a mess, and if I hadn't had RNY, I would have put on another 50 pounds. But I took it one day at a time. Which doctor to see which day, which medicine to give, what to do/call/research... next. Finding the right doctor at the right time to help with whatever the next medical issue was.
Two years later, my older son is doing great. He's still on Remicade but it's keeping the Crohn's in remission. Younger son is on a third drug to keep his bone plates open longer and is finally growing. At 17 1/2, his bone age is 14 1/2 to 15, so he still has a ways to grow, but he's doing well. And when he finally reaches his full height, we can try taking him off the 6MP.
I know none of this helps you feel any better about your daughter and what you are going through. I guess what I'm trying to say is to concentrate on the day to day and what your daughter and your family and you need to do. There will be a light somewhere at the end of the tunnel (though it doesn't feel like it right now). Try to concentrate on the here and now. I can't think of the future because when I do, I see my son getting off my health care when he's 26 and what if the new plan won't pay for the Remicade? What if the drugs stop working? There are so many what ifs in the future that you can NOT go there. Do your best today. And it sounds like you are.
One day at a time.
Hugs!
I am so sorry for what you and your family are going through. I know how hard it is when one of our children is affected. You are strong and should be very proud that you are dealing with this while still committing to your healthy new life. One day at a time.
With me, it was the Crohn's that both my kids had. We were still trying to find the right meds when I had my RNY in December. In the same month, both kids started Remicade infusions. My younger son's doctor also kept him on 6MP which combined with the Remicade, has been known to cause an untreatable form of Leukemia in a very small percentage of teenage boys. But, the 6MP will also help your body absorb the Remicade longer and better. My son had not grown in 3 years at this point. 14, still hadn't started puberty and was the 2nd shortest kid entering High School. To make a long story short, my older son was not doing well on Remicade and kept having to go back on steriods. My younger son's knees starting going really bad and was diagnosed with osteochondritis dissecans. In March, first my dog had ACL surgery, then my younger son had micro-fracture surgery. In April, my older son and I were suppose to fly out to Purdue for a college visit, but he'd been having flareups every other week to the point the doc said not only couldn't he fly, but he had to have surgery. So he went in in April to have 16cm of his intestine, 10% of his colon and his appendix removed. 2 weeks before AP tests and 6 weeks before HS graduation. I was a mess, and if I hadn't had RNY, I would have put on another 50 pounds. But I took it one day at a time. Which doctor to see which day, which medicine to give, what to do/call/research... next. Finding the right doctor at the right time to help with whatever the next medical issue was.
Two years later, my older son is doing great. He's still on Remicade but it's keeping the Crohn's in remission. Younger son is on a third drug to keep his bone plates open longer and is finally growing. At 17 1/2, his bone age is 14 1/2 to 15, so he still has a ways to grow, but he's doing well. And when he finally reaches his full height, we can try taking him off the 6MP.
I know none of this helps you feel any better about your daughter and what you are going through. I guess what I'm trying to say is to concentrate on the day to day and what your daughter and your family and you need to do. There will be a light somewhere at the end of the tunnel (though it doesn't feel like it right now). Try to concentrate on the here and now. I can't think of the future because when I do, I see my son getting off my health care when he's 26 and what if the new plan won't pay for the Remicade? What if the drugs stop working? There are so many what ifs in the future that you can NOT go there. Do your best today. And it sounds like you are.
One day at a time.
Hugs!
Bay to Breakers 12K May 15, 2011 (1:54:40) First 5K 5/23/11 (41:22)
Half Marathons: Napa: 7/18/10 (4:11:21) 7/17/11 (3:30:58) 7/15/12 (3:13:11.5)
SJ Rock and Roll: 10/2/10 (3:58:22) Run Surf City: 2/6/11 (3:19:54)
Diva: 5/6/12 (3:35:00)
HW/SW/CW 349/326/176
"Great spirits have always encountered violent opposition from mediocre minds." - Albert Einstein
Half Marathons: Napa: 7/18/10 (4:11:21) 7/17/11 (3:30:58) 7/15/12 (3:13:11.5)
SJ Rock and Roll: 10/2/10 (3:58:22) Run Surf City: 2/6/11 (3:19:54)
Diva: 5/6/12 (3:35:00)
HW/SW/CW 349/326/176
"Great spirits have always encountered violent opposition from mediocre minds." - Albert Einstein
Paul, I'm so sorry to hear what your family has been facing. Have faith that it will make you all stronger. Life has lessons to teach us - just not always in the manner we expect.
First ultra: Stone Mill 50 miler 11/15/14 13:44:38, First Full Marathon: Marine Corps 10/27/13 4:57:11, Half Marathon PR 2:04:43 at Shamrock VA Beach Half-Marathon, 12/2/12 First Half-Marathon 2:32:47, 5K PR Run Under the Lights 5K 27:23 on 11/23/13, 10K PR 52:53 Pike's Peek 10K 4/21/13, (1st timed run) Accumen 8K 51:09 10/14/12.
Paul,
I'm the step-parent of two disabled children, one with cerebral palsey and one with fetal alcohol syndrome. I'm the aunt of two nieces who lost their battle with a rare neurological disorder called Batten's Disease. In my job, I represent a lot of clients with disabled children who have family law issues.
When children are born, there are actually several iterations of the same person created. One iteration is the self-actualized child, who slowly develops over time. Another is a parent's hopes and dreams for that child. When you learn your child is disabled, you begin to mourn the iteration that lives in your hopes and dreams.
But the weird thing is that same child can have an astonishing effect on the universe. My step-daughter is going to have her third child tomorrow. She is really active in her community, assistant chair of her local political party, appointed to a governor's commission on disability rights, and she has announced her candidacy for school board.
My step-son, despite some major cognitive disabilities, is employed and living independently. He is engaged to be married. He is a published author and speaker on disability rights.
My nieces, despite the fact that they lost their battle with Batten's in their early 20's, were loved by many, many people. My oldest niece was a poster-child for Make-a-Wish, and my youngest helped pioneer new treatments for her disease.
None of this will stop you mourning the loss of your perfect child, but please... know that your child will fully actualize.
While you are going through this stuff, I recommend keeping your friends and family not only updated on what's going on with your daughter, but also on what YOU and your wife need. Ask a friend to come over and watch the game, and not talk about your daughter, for example. Or ask someone cheerful to give you a call in the morning to make sure that you're getting up to get into work. I know that for you, exercise is really important, and right now, it seems to be cathartic. Don't feel like you always have to be 100% in the moment with this new normal. You are in crisis mode, and you will be for some time. So, harness your resources and care for yourself.
I'm the step-parent of two disabled children, one with cerebral palsey and one with fetal alcohol syndrome. I'm the aunt of two nieces who lost their battle with a rare neurological disorder called Batten's Disease. In my job, I represent a lot of clients with disabled children who have family law issues.
When children are born, there are actually several iterations of the same person created. One iteration is the self-actualized child, who slowly develops over time. Another is a parent's hopes and dreams for that child. When you learn your child is disabled, you begin to mourn the iteration that lives in your hopes and dreams.
But the weird thing is that same child can have an astonishing effect on the universe. My step-daughter is going to have her third child tomorrow. She is really active in her community, assistant chair of her local political party, appointed to a governor's commission on disability rights, and she has announced her candidacy for school board.
My step-son, despite some major cognitive disabilities, is employed and living independently. He is engaged to be married. He is a published author and speaker on disability rights.
My nieces, despite the fact that they lost their battle with Batten's in their early 20's, were loved by many, many people. My oldest niece was a poster-child for Make-a-Wish, and my youngest helped pioneer new treatments for her disease.
None of this will stop you mourning the loss of your perfect child, but please... know that your child will fully actualize.
While you are going through this stuff, I recommend keeping your friends and family not only updated on what's going on with your daughter, but also on what YOU and your wife need. Ask a friend to come over and watch the game, and not talk about your daughter, for example. Or ask someone cheerful to give you a call in the morning to make sure that you're getting up to get into work. I know that for you, exercise is really important, and right now, it seems to be cathartic. Don't feel like you always have to be 100% in the moment with this new normal. You are in crisis mode, and you will be for some time. So, harness your resources and care for yourself.
Children are very resilient and they adapt quickly ...and with a parent like you she will do just fine . Don't look at it as a disability, treat her as you would any of your other children. Also remember the other children you have as they can feel disconnected and unsure how to feel. You set the tone on how others will react and treat her. I know she is little and you want to protect her but raise her to be strong and independent. I hope everything works out Jenn
20AUG12-8AM SURGERY AT ST.JOES IN TORONTO W/ DR SMITH 
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