One of the things I find most frustrating about this process is all the variables that are not being controlled for. For the last two days my back and sides have been hurting, the worse that it has been since prior to my exploratory surgery. Prior to the surgery this pain was seen as an indicator of internal issues with my Pancreas, but could have also been related to Erdheim-Chester Disease growth (the stretching, squeezing, and crushing of internal veins, tissues, and organs by the disease).
Since then I have tried to control for this pain by eating an incredibly low fat diet with minimal processed foods. The idea being that the less fat and processed foods I eat the easier it will be for my pancreas to work (my pancreas is compromised by the ECD). This plan has led to significant weight loss, which was okay when my weight was near 254 lbs. but has now become an issue because my weight is down to 160 lbs. I have become very concerned that my weight is going to drop below my acceptable BMI level of 154-176 lbs.
To address this issue I have tried to increase my caloric intake which has resulted in to much time spent eating and a little more fat in my diet. I have added shakes, protein drinks, ensure, and a bunch of other items. At the same time I am trying to eat out at least once a week (normally a feta salad with chicken and yes I know feta is very fatty). Meanwhile I have also been weaning off of my Prednisone (an anti inflammatory medication) and I am still taking Kineret. Additionally, school and soccer are back in full swing which has meant more standing and walking.
So here is the question. Why am I experiencing more pain? Is it the fat, the prednisone wean, the kineret buildup, the standing/walking, the ECD, or something as yet undiagnosed? Answer, I DONT KNOW!!!
Frustrated. Going to get myself a nutritionist and a psychologist. At least then someone will be able to explain why I am loosing weight while I go crazy.
Since then I have tried to control for this pain by eating an incredibly low fat diet with minimal processed foods. The idea being that the less fat and processed foods I eat the easier it will be for my pancreas to work (my pancreas is compromised by the ECD). This plan has led to significant weight loss, which was okay when my weight was near 254 lbs. but has now become an issue because my weight is down to 160 lbs. I have become very concerned that my weight is going to drop below my acceptable BMI level of 154-176 lbs.
To address this issue I have tried to increase my caloric intake which has resulted in to much time spent eating and a little more fat in my diet. I have added shakes, protein drinks, ensure, and a bunch of other items. At the same time I am trying to eat out at least once a week (normally a feta salad with chicken and yes I know feta is very fatty). Meanwhile I have also been weaning off of my Prednisone (an anti inflammatory medication) and I am still taking Kineret. Additionally, school and soccer are back in full swing which has meant more standing and walking.
So here is the question. Why am I experiencing more pain? Is it the fat, the prednisone wean, the kineret buildup, the standing/walking, the ECD, or something as yet undiagnosed? Answer, I DONT KNOW!!!
Frustrated. Going to get myself a nutritionist and a psychologist. At least then someone will be able to explain why I am loosing weight while I go crazy.
Did you try that Jiaogulan tea I gave you? It make people feel less tired and reduces pain... I think it may also process fat for you...
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