Glad to see you out on the town tonight... I've missed you around here. (((Hugs)))
D~
It was nice texting you back and forth for awhile. I realy do miss you.
I hope that everything works out for you and extra ((Hugs)) for everything that is going on.![]()
this is my favorite PP shot of your trip too! not only do the kids look great, that boarder is awesome!
sorry i got so far behind but i did finish it LOL
Thinking about you and praying for you Liddy!![]()
Missing you and I hope everything is going OK. (((Big hugs)))
D~
Great PP pics-especially the ones at night in front of Spaceship Earth.
Enjoyed reading your trip report. I'll be looking for your next PTR!
Update:
In June, I went to the doctor and was diagnosed with a condition. I had to go through weekly treatments to "advance" the medicine into my system for the month of July. Treatments are over, everything seems to be going on the right path. The downside is ... it has changed the way foods taste. I can NOT eat chicken -- it tastes rancid. DH had a brownie milkshake one day, and I asked him why he had eggnogg (etc). Aside from it changing flavors of food ... I also can't eat a whole list of items because it could cause flare-ups. I know this seems cryptic, but I'm not comfortable announcing things to the world, and some people have TMI-tolerances. If you are really interested in hearing more, PM me, text me, FB me, whatever. It's nothing "serious", so please don't anyone stress. So anyway .... go back to this specialist in 6 months to confirm we're still on the right path.
Then ...
I got sick. I got really sick. Went to the doctor and had tests run. Everything came back fine. Went for more tests. Fine as well. Appointments scheduled with specialists. Going for even more tests. Everything keeps pointing to gallbladder, but the gallbladder test came up fine.I can't eat -- I'm surviving on water and saltines. When I eat, I get sick. When I don't eat, I get sick. I can usually keep down food, but I am miserable. If it wasn't for the fact that I am NOT pregnant, I'd swear I was suffering morning sickness. I'm worse in the evenings, and constantly getting up in the night. Like I said, more testing next week and hopefully we can get on a path to "recovery" -- or whatever. Because school starts on the 27th, and as of now, there's NO WAY I can start.
And then during all this, I called to get DD a "no milk" note for school when her pediatrician wanted to see her because I asked for a note to authorize her to have Tums while at school. I took her in and they asked her a bunch of questions and sent her to Children's Hospital to see a GI doctor. The GI doctor talked to her for awhile, looked over her chart, then scheduled an upper scope. She had that Friday. Last we knew, she was allergic to milk and milk only -- sure, she had outside allergies (grass, mold, dust mites, etc), but the only "food allergy" she had was milk, and it was more of an intolerance (tummy aches, etc) than anything. We were so off-base.
The GI doctor said she has EE (don't ask me to try to say or spell it), but basically, she has food allergies (more like intolerances, as it doesn't cause the scary food allergies most think of -- swelling, hives, breathing difficulties, etc). She said that while it is an allergy -- and referred us to an allergist -- we are to avoid 100% all the products listed on this sheet. It showed the items and the severity of reaction. This list includes, but not limited to:
milk, soy, rice, wheat, corn, peanuts, eggs, etc.
While at the Children's Hospital, we met with a dietician. She was some help, and gave us pamphlets and print-offs of things to look out for. It may not say "wheat", but it may use other terms for wheat and it lists them (etc). This has been very stressful on all of us - trying to find foods that don't contain soy, or rice, or milk, or wheat ... I've always done well with our grocery bill ... but it doubled this week, and we skimped on stuff. While she can have most fruits/veggies ... she needs proteins and fat to help her fill full and keep her filling full until it's time to eat again. The dietician suggested canned tuna or other meats as her lunch protein ... but ALL of them contained soy (or something else). She does not have access to a microwave at school to heat things, and it has to be something she can handle on her own. I figured, even with canned meats, I could take them out of the can and put them into tupperware ... but it doesn't help if they contain products she can't have. (FYI, Tums has cornstarch, so she can't even have Tums for her tummy aches.)
The GI doctor put her on Flovent and Prilosec. I'm sure the allergist will be adding to her list of meds. (She'll also have her asthma reviewed while we're there.)
Right now, I am beyond stressed. We have met our family deductible already and the bills keep piling up.
The other night, DH sat me down and told me that because of all the bills, a WDW trip is completely out. He suggested I go ahead and cancel the trip and get our deposit back.
Today in the car, I told him that I hadn't done it yet. I still had hopes we could pull through, even with the doctor bills, my books and tuition, etc.
When we got home, he asked me for quotes, how much was already paid, when we were going etc. He said to keep the reservation, and he'd do his best to find a way to get us all to WDW in May 2013. It's still unlikely, but not completely out of the question. I'm kind of torn on the trip anyway ... as I'd really like to move next year, and I'd love new furniture. And even if we go ... my biggest fear is feeding her. Sure, the snack credits can be used by others -- but her CS credits ....I am in for a long haul in research ... and as lovethattink suggested, getting with someone in the Dining dept at WDW. I am concerned about TS places ... but I'd say they'd be able to provide her with some plain grilled meat, a couple sides of plain veggies, and a bowl of fruit as dessert. But I worry how comfortable she'll feel sitting there watching us eat breads, baked goods, creamy dishes, etc.
Anyway ... until discounts are released, and I get out from these doctor bills, I'm not going to start a PTR. Once I feel more confident the trip is still a "go" ... then I'll do a small PTR. So it will be, what, November at the earliest?
Regardless, prayers that my doctors can find out what's wrong with me (and quick) would be so beneficial. Also, I'd love prayers that God will grant me the wisdom to make great food choices for DD and grant me understanding on planning nutritious meals for her. Once I meet with the allergist (and find out if there's any other allergies), I plan to find a good dietician that can help me plan out "sample" meals for her, give me ideas on where to shop for foods for her, etc.
Anyway, going to go crawl back in bed. It's been a good (but stressful) day, but I'm still exhausted. I'll try to be around more now that school is back in session for the kids and the doctor appoints have slowed down.I will update again once we have more of an idea of what's wrong with me.
Anyway my wonderful DIS-family, thank you for listening and for being supportive and understanding! You guys are the best!!!
KatMark said:
I am so sorry to hear all this my friend. I will be keeping you and DD in my thoughts and prayers.
We won't be going in May, but I do hope that you are able to keep your trip.
Thank you! I desperately need to get caught up with my threads. I was looking forward to meeting you!
I really appreciate the prayers sooo much!![]()
Well, I do have a good reason we aren't going in May...the kids moved the wedding up from 2014 to 2013. So much excitement going on.
Lidian, give me a call tomorrow when you get a chance. EE is what Grumpy has. We were told it would just get worse, but this summer it got better! He use to have to take Gastrocrom when he ate. He doesn't have to do that anymore.
As for the tuna, next time I go grocery shopping I will be sure to text you a picture of the brand we buy for him. It's just water and tuna in there. Off hand neither dh nor I can think of the brand.
I'm so sorry you are having health problems too. Will be praying for the both of you.
I haven't been around the Dis much summer, but with the rainy weather today I have been trying to catch up on my suscribed threads.
My goodness, what an update. I am sorry for everything you and your DD are going through. I hope everything gets better soon and I'll be keeping you and your DD in my prayers.
I know we chatted for a while last week...
I just wanted to say that my heart has just been breaking for all that you are going through.
I wish I could do something to help you out, but I just have no idea what I could do?
I pray for wisdom in how to feed dd... I might be totally wrong here - but it sounds like what she can have would be very similar to what you can eat on the Paleo or Primal diet - can't remember which is which off hand? Maybe google it, so you can see what I am talking about. So sorry - just trying to help out with my very limited understanding. Please let me know if there is anything at all I can help you with.
That is horrible about the chicken for you - especially if that's one of the things that dd can eat.
I am so glad that you checked in. I am sending so many prayers your way for everything. If you are ever bored - or at your whitts end - please text me, I am always here for you - You know that!
And Pixie Dust for a May 2013 trip.
Many (((Hugs))) my friend.
D~
Liddy~so glad to see you back. So sad for what your family is going through right now. Please know that you and DD are still in my prayers. Wisdom for Mommy will be at the top of that list. I pray God will bring friends into your life that KNOW what you are going through and can help you navigate these new paths. It sounds like that prayer is already being answered with LovethatTink having someone with the same diagnosis. I pray the you and DD find foods that leave you satisfied and healthy!!!
I hope you will consider keeping this TR thread open just so we can still have a way to communicate with you and keep up with what is going on with you and your family!
I've been lurking reading your trip report, but just wanted to say that I'm so sorry for what you're going through. I hope and pray that your and your daughter's health issues will be worked out soon with your new diets! Prayers for you!
Hi! I saw that you left from the Knoxville area. I live right outside Knoxville. We also try to visit Disney every year. I hope that you are feeling better and are able to continue with school. I start back in a few weeks. My name is Crystal.
Wow!!!! Well, I guess I can forgive you for not meeting up with me.Grats to them on setting new dates! We'll just have to plan to meet another year!
Tink, thanks for the reassurance! She was originally diagnosed in 2008 with it, but we were only told cow's milk. It has progressed two levels and now there's a whole slew of things. Sigh. But it does give me a good outlook! We've also added honey to her diet (which I hope is a good thing). DH said it should help boost her system and help with her allergies.
Thanks for texting me a picture! We found one can of tuna, but it was packed in olive oil (yuck). DD tried it and loved it! DH also made her try sardines (she loved it!). Today, she has canned salmon in her lunch.
What did they do to treat Grumpy's EE, was it just the Gastrocrom or was there more, if you don't mind texting me and chatting about it sometime.
Thank you!I really appreciate the prayers!
Thanks D!
I tried to find info on the paleo diet thing ... but it may be close, but not exactly. She can have legumes (but not peanuts), she can have starches (ie potatoes), and she can have -some- grains, just not wheat, etc.
At this point, I have been told she has to have protein and fat with every meal. Right now, its canned tuna, salmon, etc in her lunch box. She's loving it, as she loves canned tuna/salmon/etc. She has oatmeal with honey and fruit for breakfast (as DH says oats is it's own grain).
My former English professor has been chatting with me, too. They have a DS who is allergic to everything under the moon (it seems) and have been going through their recipes and cookbooks trying to offer alternatives and suggestions. They've given me ideas on "flours" and I could make her tortillas or something from them. They've offered to loan me their press to see if it would be feasible and if she likes it. So I know I am blessed with amazing friends (Tink and my English professor's family) who have been knocking out suggestions left and right!
We had chicken last night for dinner. I passed on the chicken, but I enjoyed the veggies and snacked on some leftover meats in the fridge. We just cook our meals plain (well, we add salt and pepper, maybe a dash of other seasonings), so we feel she can at least enjoy the foods. And we add butter and stuff to our individiual plates if we need it. (For instance, we had boiled potatoes -- so we buttered them out of the pot so DD could enjoy potatoes.)
The week is going well so far. She's keeping a Food Journal fo rme, so I can check it to see how she feels about what she eats, if she's hungry shortly after lunch, if she gets a tummy ache, if I packed too much food for her, etc. I felt it was the best way to communicate, and we have it in writing for when we see a dietician (that I'll schedule after her allergy appointment Friday). It will also help us monitor if she's missing out on nutrients and what we can do to fix it -- whether it be add in a supplement or a certain food. It'll take time, but I'm feeling really good on the path right now.
Thank you Oopsi!
I truly appreciate your prayers!!! I'll be honest with you ... I'd kind of like this thread to go away ... but only because there's a new one started.I just have to keep crunching numbers, but honestly, it does look good for May. However, we may have to change dates. Everything is still up in the air.
Thank you so much for commenting and for your prayers!It really means a lot to me!
Oh wow! Such a small world! I'm right outside of Knoxville (south actually). Born and raised here! I'd love to hear how close you are. I'm in Maryville, and we drive through Lenoir City to get to the interstate when we visit WDW.
Where are you going to school at? I start back on the 27th (well technically classes start on the 25th, but I don't have any Saturday classes).I ordered most of my books (I was so happy Amazon offers a rental process, and most of my books are via rentals and arrive Wednesday).
Thank you for commenting and for the kind words.
So I downloaded the DISboard app to my phone and iPad ... but I don't know how to comment with them. I did it once, but now I can't figure out what I did. Anyone proficient in the app that can tell me what I'm doing wrong?Even when I was tinkering with it the other night, I still couldn't get it to multi-quote ... just quote one post at a time. But even now, I don't know what I did to get that far.
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Sorry I don't have time to respond to everything you wrote...
I am glad about the food journal, especially if it helps.
I know you'll insist on telliing me that May is the only time you can go - but if you are thinking about switching dates, March is very nice.
Posting on the Dis app...
There's an arrow att he top of each post, it will bring up a pop up screen to quote... Then just type in that.
Glad to see you back...
D~
Glad you found tuna, salmon and sardines. She is braver than me, way to go on trying a sardine.
I'll text you about the treatment.
Hi again! I live in Sevierville. So I know where you live. I am guessing your daughter goes to ETCH for her specialist. I wanted to work there, I am a pediatric RN from GA, but the drive was too long. I have two little ones, 4 and 6. I work for Covenant Health. I am going to Middle Tennessee State Univ. It is online with clinicals where I live. I am going back for Nurse Practitioner. I was a Math major many years ago so I can relate your love to Accounting. What school are you at? Message me and maybe we can meet up at West Town Mall and the kids can play. Talk to you later!
Wow! You're world has been turned upside down, that's for sure
I am the wrong one to give advice on allergies as we are a lucky family in that respect. But it sounds like you have found some good things for both DD and you. I'm sure there is a ton of information online, you just have to have 20 spare hours a week to search it all out!
I won't pray for you (just not my thing) but I will have you in my thoughts, and if I hear of anything that might help, I'll let you know! Fingers are crossed that you can still go in May.