Poodles
Member
- Joined
- Jan 25, 2016
- Messages
- 22
Someone contacted me regarding my status, so I thought I'd post an update.
Since my reversal in January 2016 I have gained 60lbs. On purpose. Now, I have hit the "oh ****, I gotta maintain" point in my journey. I weigh 180, size 14. I take 2 DS multi, 1500 mg calcium, 1000mg vit C, and 4 Super Colon Cleanse daily. One 50,000 iu dry vitamin D a week.
The messed up part of the weight issue is I am eating mostly raw, vegan, organic, gluten free low carb and still have a sleeve. Of course, I ate all kinds of crap at first to gain weight. Now, I'm smart enough to stop.
Even on thanksgiving, I took a bite of the usual stuff and thought to myself, it's not worth it. Now, I am regretting the sweets. Not because of the calories, but because I woke up hungry. Sugar puts me in a horrible cycle. I'm gonna need to detox from thanksgiving!
Since my reversal, I've been getting better! I can walk again!
Had my reversal in January. Was walking with a walker in March. Using a cane in May. Totally by myself in June. Drop foot issue and leg braces are gone! Neurological issues (shaking uncontrollably) gone.
Started slow doing water walking and water aerobics. Then graduated to land when I was confident I would not fall. Now, I am doing 30 minutes on the recumbent bike, weights, and going to Silver and Fit classes 3 times a week at the gym. I'm the youngest one in class, and after 4 weeks I can keep up with the 80 year olds. My hip still has issues, but I'm managing.
My kidneys are better. I am processing oxalates better and have not had a UTI since January. Go next week to see if I have any stones.
My neurological issues are improving. My doctors are amazed. My most recent EMG had my doctor shaking his head because of improvement.
Although the weight management is back at this point. I am VERY happy with my reversal decision. I did everything they told me to, and the doctors didn't put my symptoms together with malnutrition until it damn near killed me. All the lab work they were checking was good. It was the stuff they didn't think to check that was killing me. My copper, thiamine, selenium, were extremely low. **if your zinc is low, check copper too**
If anyone runs into this situation I recommend that you try to correct issues with increased vitamins first. Liquid if you must. If your body is like mine, and it just won't absorb them, then consider a reversal. It's not something to be done lightly. It is every bit as dangerous as the first surgery. The reversal was my last ditch effort. I was being fed thru tubes, bedridden, and dying.
The human body is a miraculous thing. It will heal if you give it what it needs. I try to follow a modified Gerson Therapy diet. It was made for a migraine cure, but they found it helped everything from MS to cancer. Since I was diagnosed with PLS, I gave it a try. Now that my malnutrition issues have been resolved, my nerves are healing. It's a bitch in regards to pain management, but the fact that I feel pain means the nerves are healing. My doctor says I'll be "hyper-sensitive" while the nerves heal, but it should level out.
As for specifics of what I eat a typical day consists of 2 eggs, corn tortilla or gluten free bread, mini bell peppers, broccoli sprouts, avocado, red onion, broccoli, cauliflower, cabbage, grapefruit, Apple, banana, tomato, some type of bean with onions/garlic. Love Edamame for snacks. Drink pea protein milk.
Don't eat a lot of fat.
I don't look at a salad as punishment anymore. Granted, I don't like lettuce, but other veggies are wonderful. I like them now. They are what saved me. Once I realized that I had to eat well to be well, it was easy. Ben and Jerry are not my friends. That bag of mini bell peppers may be gone in one sitting, but that is so much better for me than sweets. I'll even run into Kroger for some fruit vs going thru a drive thru. Vietnamese PHO with no noodles and twice the sprouts is awesome!! I've even learned to make my own broth (I omit the sugar) and pour the broth over various veggies at home.
The Asian cultures and vegetarian cultures have figured out a lot of stuff for us. Curry is awesome. I use Penzy Spices Now Curry, Chili 9000, and Sandwich sprinkle (on everything). I don't use salad dressing. Just season with a good blend of spices. Not to save calories, but because it tastes good!
My lab work is mostly normal. I'm still dealing with calcium, iron, and PTH issues due to calcium uptake. But, everything is in normal range.
I'm off all but one medication.
My doctors are happy with my numbers and my weight. My mineralologist actually put in my plan to maintain at 180 and continue vitamins as is. Then he told me not to change a thing in my diet because doing something "stupid" to try to lose weight could ruin everything I've done since January. So my goal is to maintain. My body is holding onto everything, it is still healing. Haven't quite figured out a perfect calorie count. I just eat when I'm hungry and try to make good choices.
I am very happy with my reversal. I'm out of a wheelchair and walking again.
Since my reversal in January 2016 I have gained 60lbs. On purpose. Now, I have hit the "oh ****, I gotta maintain" point in my journey. I weigh 180, size 14. I take 2 DS multi, 1500 mg calcium, 1000mg vit C, and 4 Super Colon Cleanse daily. One 50,000 iu dry vitamin D a week.
The messed up part of the weight issue is I am eating mostly raw, vegan, organic, gluten free low carb and still have a sleeve. Of course, I ate all kinds of crap at first to gain weight. Now, I'm smart enough to stop.
Even on thanksgiving, I took a bite of the usual stuff and thought to myself, it's not worth it. Now, I am regretting the sweets. Not because of the calories, but because I woke up hungry. Sugar puts me in a horrible cycle. I'm gonna need to detox from thanksgiving!
Since my reversal, I've been getting better! I can walk again!
Had my reversal in January. Was walking with a walker in March. Using a cane in May. Totally by myself in June. Drop foot issue and leg braces are gone! Neurological issues (shaking uncontrollably) gone.
Started slow doing water walking and water aerobics. Then graduated to land when I was confident I would not fall. Now, I am doing 30 minutes on the recumbent bike, weights, and going to Silver and Fit classes 3 times a week at the gym. I'm the youngest one in class, and after 4 weeks I can keep up with the 80 year olds. My hip still has issues, but I'm managing.
My kidneys are better. I am processing oxalates better and have not had a UTI since January. Go next week to see if I have any stones.
My neurological issues are improving. My doctors are amazed. My most recent EMG had my doctor shaking his head because of improvement.
Although the weight management is back at this point. I am VERY happy with my reversal decision. I did everything they told me to, and the doctors didn't put my symptoms together with malnutrition until it damn near killed me. All the lab work they were checking was good. It was the stuff they didn't think to check that was killing me. My copper, thiamine, selenium, were extremely low. **if your zinc is low, check copper too**
If anyone runs into this situation I recommend that you try to correct issues with increased vitamins first. Liquid if you must. If your body is like mine, and it just won't absorb them, then consider a reversal. It's not something to be done lightly. It is every bit as dangerous as the first surgery. The reversal was my last ditch effort. I was being fed thru tubes, bedridden, and dying.
The human body is a miraculous thing. It will heal if you give it what it needs. I try to follow a modified Gerson Therapy diet. It was made for a migraine cure, but they found it helped everything from MS to cancer. Since I was diagnosed with PLS, I gave it a try. Now that my malnutrition issues have been resolved, my nerves are healing. It's a bitch in regards to pain management, but the fact that I feel pain means the nerves are healing. My doctor says I'll be "hyper-sensitive" while the nerves heal, but it should level out.
As for specifics of what I eat a typical day consists of 2 eggs, corn tortilla or gluten free bread, mini bell peppers, broccoli sprouts, avocado, red onion, broccoli, cauliflower, cabbage, grapefruit, Apple, banana, tomato, some type of bean with onions/garlic. Love Edamame for snacks. Drink pea protein milk.
Don't eat a lot of fat.
I don't look at a salad as punishment anymore. Granted, I don't like lettuce, but other veggies are wonderful. I like them now. They are what saved me. Once I realized that I had to eat well to be well, it was easy. Ben and Jerry are not my friends. That bag of mini bell peppers may be gone in one sitting, but that is so much better for me than sweets. I'll even run into Kroger for some fruit vs going thru a drive thru. Vietnamese PHO with no noodles and twice the sprouts is awesome!! I've even learned to make my own broth (I omit the sugar) and pour the broth over various veggies at home.
The Asian cultures and vegetarian cultures have figured out a lot of stuff for us. Curry is awesome. I use Penzy Spices Now Curry, Chili 9000, and Sandwich sprinkle (on everything). I don't use salad dressing. Just season with a good blend of spices. Not to save calories, but because it tastes good!
My lab work is mostly normal. I'm still dealing with calcium, iron, and PTH issues due to calcium uptake. But, everything is in normal range.
I'm off all but one medication.
My doctors are happy with my numbers and my weight. My mineralologist actually put in my plan to maintain at 180 and continue vitamins as is. Then he told me not to change a thing in my diet because doing something "stupid" to try to lose weight could ruin everything I've done since January. So my goal is to maintain. My body is holding onto everything, it is still healing. Haven't quite figured out a perfect calorie count. I just eat when I'm hungry and try to make good choices.
I am very happy with my reversal. I'm out of a wheelchair and walking again.
