Apologies for dropping out of sight
I wanted to drop back in for a bit to ask forgiveness for dropping out of sight here on these amazing boards. I've met (and not met!) so many incredible people through this site that it's shameful to just have left and never thanked everyone for the information, help, and support y'all have given me. And the chance to be part of this community was ... well ... there aren't enough superlatives in the known and unknown universes.
Y'all are good souls.
For the past many months, I've been so frustrated at my inability to lose weight despite a LapBand. I had my LapBand surgery in January 2008 and lost 50 pounds, but then began to slowly gain every week -- just a few ounces at a time, but still it adds up when it becomes a longterm trend. I was so frustrated and kept going back and going back and going back to my bariatric surgeon pleading for some way to make things work. I had 13 adjustments, and three times the fills were so tight that for a week each time, I couldn't even get 32 oz. of liquids down in a day, much less anything solid or even semi-solid. And although I would lose weight during those times, it was "water weight" from being dehydrated and I would immediately gain it back once the Band was loosened.
And the whole time, my health was failing. My heart was almost literally dissolving, and my lungs became sort of lacy with lesions and adhesions. My muscles deconditioned rapidly, and I suffered leg camps so bad that I had purchase another Tens unit to cover all the spasming muscles in my thighs and calves at night. I had ulcer surgery because medication wasn't even beginning to heal the esophageal and stomach ulcers.
Well, finally my bariatric surgeon became as alarmed and frustrated as I was. Fortunately, he is a very good person and a good doctor, and he never even hinted that he suspected I was cheating and then blaming him for just doing the surgery wrong and then being a hypochondriac to top it all off. He ordered all appropriate testing and referrals, and I was followed very closely. He and his staff were very compassionate and believed that I truly and honesty was doing everything humanly possible to comply with the Band but that it just wasn't working because something was going horribly awry in my body.
Ultimately, my surgeon put everything together and got me a referral to an endocrinologist because he suspected Cushing's disease.
And that's what it turned out to be.
Right now I'm in the midst of the diagnostic process to determine the mechanism of the underlying tumor in the pituitary gland in my brain. There may be other smaller tumors on my adrenal glands as well, and possibly lung lesions. This is not cancer but rather a malfunction caused by signals sent from the pituitary gland. Once the docs figure out how the tumor is functioning (or, rather malfunctioning!), I'll be going to an NIH hospital in Bethesda for surgery and treatment planning.
This is one of the hardest situations I've ever faced in my life. And God knows, I've faced some tough battles, as many of us here have!! Of course, it is a relief to have an answer to this constellation of medical symptoms. And to know that the weight gains and inability to lose weight despite many sacrifices to the Band gods are not due to some fundamental weakness of my character and soul. (My character and soul may have a lot to answer for, but not all of this rests at their doorstep! Ha.)
But I wouldn't have had the courage and assertiveness to insist on answers if I hadn't been part of this incredible community here in the North Carolina neighborhood of the OH forums.
I thank each and every one of you, and sincerely apologize to all who contacted me to ask whether I was ok and where I was and when I might come back. I just went into the cave for a long time, and it was unkind of me not to tell you so and not to let you know how much your contacts meant to me.
Y'all are good souls.
For the past many months, I've been so frustrated at my inability to lose weight despite a LapBand. I had my LapBand surgery in January 2008 and lost 50 pounds, but then began to slowly gain every week -- just a few ounces at a time, but still it adds up when it becomes a longterm trend. I was so frustrated and kept going back and going back and going back to my bariatric surgeon pleading for some way to make things work. I had 13 adjustments, and three times the fills were so tight that for a week each time, I couldn't even get 32 oz. of liquids down in a day, much less anything solid or even semi-solid. And although I would lose weight during those times, it was "water weight" from being dehydrated and I would immediately gain it back once the Band was loosened.
And the whole time, my health was failing. My heart was almost literally dissolving, and my lungs became sort of lacy with lesions and adhesions. My muscles deconditioned rapidly, and I suffered leg camps so bad that I had purchase another Tens unit to cover all the spasming muscles in my thighs and calves at night. I had ulcer surgery because medication wasn't even beginning to heal the esophageal and stomach ulcers.
Well, finally my bariatric surgeon became as alarmed and frustrated as I was. Fortunately, he is a very good person and a good doctor, and he never even hinted that he suspected I was cheating and then blaming him for just doing the surgery wrong and then being a hypochondriac to top it all off. He ordered all appropriate testing and referrals, and I was followed very closely. He and his staff were very compassionate and believed that I truly and honesty was doing everything humanly possible to comply with the Band but that it just wasn't working because something was going horribly awry in my body.
Ultimately, my surgeon put everything together and got me a referral to an endocrinologist because he suspected Cushing's disease.
And that's what it turned out to be.
Right now I'm in the midst of the diagnostic process to determine the mechanism of the underlying tumor in the pituitary gland in my brain. There may be other smaller tumors on my adrenal glands as well, and possibly lung lesions. This is not cancer but rather a malfunction caused by signals sent from the pituitary gland. Once the docs figure out how the tumor is functioning (or, rather malfunctioning!), I'll be going to an NIH hospital in Bethesda for surgery and treatment planning.
This is one of the hardest situations I've ever faced in my life. And God knows, I've faced some tough battles, as many of us here have!! Of course, it is a relief to have an answer to this constellation of medical symptoms. And to know that the weight gains and inability to lose weight despite many sacrifices to the Band gods are not due to some fundamental weakness of my character and soul. (My character and soul may have a lot to answer for, but not all of this rests at their doorstep! Ha.)
But I wouldn't have had the courage and assertiveness to insist on answers if I hadn't been part of this incredible community here in the North Carolina neighborhood of the OH forums.
I thank each and every one of you, and sincerely apologize to all who contacted me to ask whether I was ok and where I was and when I might come back. I just went into the cave for a long time, and it was unkind of me not to tell you so and not to let you know how much your contacts meant to me.
Kim
Thank you so much for your kind wishes and prayers.
Another example of why coming here to this forum is a lifesaver. We've all been through so much, and it's all very discombobulating. But once we take of the training wheels of our medical assertiveness, we're prepared to take care of ourselves in all new ways. And I learned that here. (Even though I didn't do a very good job of keeping up with this community, I still learned from everyone!)
(And let that be a lesson to all and sundry: Keep up with the community that gives you the lessons you need! /ending the mom-shaking-the-finger-to-the-beat-of-her-always-wear-clean-underwear speech)
(Ha.)
Another example of why coming here to this forum is a lifesaver. We've all been through so much, and it's all very discombobulating. But once we take of the training wheels of our medical assertiveness, we're prepared to take care of ourselves in all new ways. And I learned that here. (Even though I didn't do a very good job of keeping up with this community, I still learned from everyone!)
(And let that be a lesson to all and sundry: Keep up with the community that gives you the lessons you need! /ending the mom-shaking-the-finger-to-the-beat-of-her-always-wear-clean-underwear speech)
(Ha.)
Kim
I think this is a great forum also. I have been around since Feb. Just had RNY 9/17.
Sorry to hear of all your health problems. I pray that now they have found a diagnosis, they can fix it and you will be better.
Sorry to hear of all your health problems. I pray that now they have found a diagnosis, they can fix it and you will be better.
It is not the magnitude of our actions but the amount of love that is put into them that matters.
Mother Teresa
Mother Teresa
Thank you so much. I'm confident I have the best possible care, and cannot give enough thanks to this community for keeping me going and teaching me to be assertive in my weight-loss surgery process ... which led to my being assertive in finding out what was going wrong ... which led to my weight-loss surgeon being the one to make the right call.
Seriously, there were 14 other doctors who missed the diagnosis in the past three years. If I had not had LapBand surgery and if I had not had my particular surgeon, I would not have been diagnosed in time. He saved my life, and this community helped that happen.
What a miracle! It sounds like exaggeration, but that's just what happened.
It's a wonderful thing that you are here. Congratulations on your recent surgery! You have taken a great step and are in great hands for any information and support you'll need.
Seriously, there were 14 other doctors who missed the diagnosis in the past three years. If I had not had LapBand surgery and if I had not had my particular surgeon, I would not have been diagnosed in time. He saved my life, and this community helped that happen.
What a miracle! It sounds like exaggeration, but that's just what happened.
It's a wonderful thing that you are here. Congratulations on your recent surgery! You have taken a great step and are in great hands for any information and support you'll need.
Kim
(((((Kim))))),
First of all, no apologies necessary. We all do what we have to do to survive and if 'going into the cave' is what you needed to, that's what you needed to do. I'm glad that you know that we are still here for you and care about you and your well-being. You have been missed and I for one am so very glad to 'see' you again.
Secondly, while I'm so sorry that you have to deal with Cushings, I'm glad to hear that you have a diagnosis and that it is ultimately treatable. I am so very proud of your unrelenting persual of your own health and welfare. Some would have just given up, but you listened to your body and got answers.
Please come back and lean on us as much as you need and want. We have strong shoulders and are here for you. We miss you and look forward to your return to us and to health.
Warmly,
Barbara
ObesityHelp Coach and Support Group Leader
http://www.obesityhelp.com/group/bcumbo_group/
High-264, Current-148, Goal-145
Awww, Barb ... See? You're the best. Proof right there.
One of the greatest memories I have of the past 20 months since my Band surgery is when we all went shopping together while you were on the prowl for a dress for the wedding in California (you know, the one I accidentally called you in the middle of when I forgot that was the weekend you were out there?? LOL). I'll never forget how beautiful you looked in that gown with those amazing shoes that just happened somehow to be there in your size and went PERFECTLY with that dress. It was so much fun spending the afternoon with you and the girls!!!
A coworker of mine has lost 90 pounds since her WLS a few months ago, and I just sent her to those very same stores three weeks ago. I would never have been able to offer her that resource without our shopping expeditions. It felt so good to have something girly to offer in celebration of her success.
Thank you for the offer of strong shoulders, too. A beautiful memory and a promise I can count on -- that's a lucky day if ever I saw one.
One of the greatest memories I have of the past 20 months since my Band surgery is when we all went shopping together while you were on the prowl for a dress for the wedding in California (you know, the one I accidentally called you in the middle of when I forgot that was the weekend you were out there?? LOL). I'll never forget how beautiful you looked in that gown with those amazing shoes that just happened somehow to be there in your size and went PERFECTLY with that dress. It was so much fun spending the afternoon with you and the girls!!!
A coworker of mine has lost 90 pounds since her WLS a few months ago, and I just sent her to those very same stores three weeks ago. I would never have been able to offer her that resource without our shopping expeditions. It felt so good to have something girly to offer in celebration of her success.
Thank you for the offer of strong shoulders, too. A beautiful memory and a promise I can count on -- that's a lucky day if ever I saw one.
Kim
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