Got my labs back for the last two weeks. Passed green beans last week, and rice and grapes this week (grapes were a freebie, since I could drink grape juice). Ate my first bites of applesauce and dried apple chips tonight. Strange diet, but better than drinking 5 juice boxes a day. Down to 1-2, depending on how much I fill up on the rest of the solid foods. Starting to feel more normal eating SOMETHING.
Hopefully the new year brings more good foods to eat, and finds the cause of this disease. Healing for my brother would be awesome too. It's been a good, relaxing last week to 2011 with Adam off work and spending time with the family. Killed me not to have any desserts or even a pizza or steaks, but I survived :)
Thursday, December 29, 2011
Friday, December 16, 2011
Let the food trials begin!
As you can probably guess by the title, the week went well. I had my endoscopy on Monday, and it showed that everything was "calm." We found out Thursday that the biopsies showed no eosinophils (EOS), which is exactly the result we wanted after the Neocate diet and prednisone. The allergy testing on Tuesday showed every food group was negative, as well as every environmental factor. I had mixed feelings on that - I was hoping something would show so we could get a little clearer idea of what caused it, but I'm glad nothing showed up as I've never been allergic to anything in my life.
We met with 3 doctors on Thursday. Dr. Gonsalves is keeping me on the current meds and ok'd me to start food trials. We'll still do weekly blood testing to monitor the EOS levels. Then we met with Beth the dietician, and she went over the food trials. I picked my foods to cover 1 month. No seasonings but salt, pepper, and olive oil. It's disappointing to think how long it will take to start getting to eat my normal foods, but it's food! I had my first can of green beans last night, and a second tonight, both of which I digested just fine. My body is adjusting internally obviously to the solid food, so that'll take a bit of work-through, but no pain and I get to eat. My mom made fun of me eating the whole can, but heck, when it's all you can have, you do it. I will continue to drink the juice boxes for the next year, until we can test all the foods.
Next week I can start plain white rice. I have to be very careful reading labels to ensure it wasn't in a manufacturing plant with another allergenic item, etc. Minute Rice was safe (the big box), so I picked up some of the rice I could microwave (pre-packaged). Found out that had soy in it and put it back. It's amazing how much stuff is contaminated with other high-allergy items. I ended up buying some stuff I'll be giving to the food pantry. I'm very hopeful we'll fly through the first few food groups without relapse. Unfortunately, peas are on the highest allergenic list, so I won't get to have those probably for about another year. But that's ok.
I may not be able to eat green beans sauteed with margarine and onions (that would be 3 weeks - one for beans, one for onions, one for margarine), but at least I can do beans for now. I'm happy for Christmas I can have rice and green beans. We've come a long way, and I'm hopeful for the future. I plan to return to work on January 2nd, part-time to start. The steroid psychosis is under better management and seems to be improving.
I thank you all for your prayers and support during these last four months. Have a Merry Christmas!
We met with 3 doctors on Thursday. Dr. Gonsalves is keeping me on the current meds and ok'd me to start food trials. We'll still do weekly blood testing to monitor the EOS levels. Then we met with Beth the dietician, and she went over the food trials. I picked my foods to cover 1 month. No seasonings but salt, pepper, and olive oil. It's disappointing to think how long it will take to start getting to eat my normal foods, but it's food! I had my first can of green beans last night, and a second tonight, both of which I digested just fine. My body is adjusting internally obviously to the solid food, so that'll take a bit of work-through, but no pain and I get to eat. My mom made fun of me eating the whole can, but heck, when it's all you can have, you do it. I will continue to drink the juice boxes for the next year, until we can test all the foods.
Next week I can start plain white rice. I have to be very careful reading labels to ensure it wasn't in a manufacturing plant with another allergenic item, etc. Minute Rice was safe (the big box), so I picked up some of the rice I could microwave (pre-packaged). Found out that had soy in it and put it back. It's amazing how much stuff is contaminated with other high-allergy items. I ended up buying some stuff I'll be giving to the food pantry. I'm very hopeful we'll fly through the first few food groups without relapse. Unfortunately, peas are on the highest allergenic list, so I won't get to have those probably for about another year. But that's ok.
I may not be able to eat green beans sauteed with margarine and onions (that would be 3 weeks - one for beans, one for onions, one for margarine), but at least I can do beans for now. I'm happy for Christmas I can have rice and green beans. We've come a long way, and I'm hopeful for the future. I plan to return to work on January 2nd, part-time to start. The steroid psychosis is under better management and seems to be improving.
I thank you all for your prayers and support during these last four months. Have a Merry Christmas!
Monday, December 12, 2011
Endoscopy Day
Adam took me downtown for the endoscopy today, following Drew's 2 year appointment and Lucy's appointment at the doctors. We drove Dave back downtown with us.
The sedation didn't work on me, so I was awake. Not super comfortable, but better than being awake during a colonoscopy I would think :) The doctor mentioned things looked calm, so I'm assuming that's good. We will see her on Thursday, and hopefully we will have some answers on how the biopsies looked.
Tomorrow, Mom and I take off at 6am to head back for allergy testing. Pat Jarot is babysitting for us with my Dad, and Adam will go to work. he has to take off again on Thursday for the doctor visits, so we're trying to split things up. I still can't believe Drew will be two on Sunday. Hopefully mommy can come up with some small party to celebrate.
The psych meds are kicking in, and I'm feeling better emotionally. I'm super tired with all the sedation meds and getting up early and no naps, so I'm off to bed. More updates will follow throughout the week...
The sedation didn't work on me, so I was awake. Not super comfortable, but better than being awake during a colonoscopy I would think :) The doctor mentioned things looked calm, so I'm assuming that's good. We will see her on Thursday, and hopefully we will have some answers on how the biopsies looked.
Tomorrow, Mom and I take off at 6am to head back for allergy testing. Pat Jarot is babysitting for us with my Dad, and Adam will go to work. he has to take off again on Thursday for the doctor visits, so we're trying to split things up. I still can't believe Drew will be two on Sunday. Hopefully mommy can come up with some small party to celebrate.
The psych meds are kicking in, and I'm feeling better emotionally. I'm super tired with all the sedation meds and getting up early and no naps, so I'm off to bed. More updates will follow throughout the week...
Sunday, December 11, 2011
Big week ahead
It's been since 11/29 when I went off the prednisone, and the big week of testing is here. David and I had the Sacrament of the Sick today from Bishop Joe, and I feel prepared to face the week. Tomorrow is the endoscopy (3 hours), followed by allergy testing on Tuesday (3 hours), and meeting with 3 doctors on Thursday. I hope the results show I'm in remission and can start the food trials. It'll make the 3 long trips back and forth to Northwestern on 3 separate days worth it :) Wednesday and Friday will probably be days of rest, as I still don't have tons on energy on this diet.
Mentally, I'm doing better with the new anti-depression and anti-anxiety meds. My parents have been a huge help to Adam and I the last two weeks; I reacted badly mentally/emotionally when I stopped the meds, just like when I dropped from 30 to 20mg.
I hope to share some good news later this week!
Mentally, I'm doing better with the new anti-depression and anti-anxiety meds. My parents have been a huge help to Adam and I the last two weeks; I reacted badly mentally/emotionally when I stopped the meds, just like when I dropped from 30 to 20mg.
I hope to share some good news later this week!
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