I traveled...the ups and downs of it

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Erica P-G
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I traveled...the ups and downs of it

Post by Erica P-G »

Hi Everyone,

My mom and I went on our 3 day vacation for our birthdays (because she turned 70 the end of March and I turn 50 the middle of August).

As most can imagine I was a little bit nervous, having to think and rethink what to bring, will it be enough, can I pack it everywhere, will there be food I can eat where we go etc....

For one thing I didn't get crazy looks for bringing my food pack into restaurants and had knowledgeable servers when it came to gluten....soy not so much.

I feel I may have gotten into some gluten (I am not sure it will ever be 100% avoidable) as I have a headache approaching today and that would correlate with the 3 day thing and symptoms. Luckily I don't have joint aches.

I tried to just go with the flow of the drive to Hood River OR, experience the Mt. Hood Train ride and the shopping, and chatting up a storm with my mom, without over doing it along the way. I don't feel like an average 50 year old, I think most would have enjoyed going out and finding some night life to partake in.....not me, I enjoyed a blue agave blackberry margarita and ate a great mexican meal and I crashed by 9:00 pm at the hotel. Oh well....

One thing I can feel good about is that it did not promote the explosive WD, I may not have had my happiest bathroom visits after this weekend but I was not in any pain or urgency, so as long as I don't make a habit of going outside my food comfort zone but only a few times a year I should be able to continue to keep enjoying bits and pieces of life as they come along.

The one thing that hit me hard though was being at a restaurant and not being able to order what I remember tasting so good to me in my past life....it was harder to watch my mom order freely and consume a meal that when I smelled it brought back feelings of familiarity and my eyes welled up a little bit knowing I would never get to experience that part of my life ever again. I now have to create new favorite smells, and this is harder than I thought, and is hitting me harder than I thought I would let it. I am also noticing it is harder for me to work at my current job due to all the food options available and not being able to consume 90% of them, either due to gluten, soy or it being too much fiber.

Just when I felt I was getting a handle on emotions, and routine I'm learning a thing or two once more. I still consider myself lucky though, and wont be complaining about my life...there are just a few hard spots to continuously adjust to at times.

Hugs to All,
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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ldubois7
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Post by ldubois7 »

You're so brave & it sounds like you had a great time & you didn't have to go back to square one!
Sounds like a winning weekend for you!

I know how you feel about smelling the old food smells that you enjoyed....you're not alone there!

Thanks for sharing!
Linda :)

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MTHFR gene mutation and many more....
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tex
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Post by tex »

Yep, MC messes with our mind as much as it messes with our body — maybe that's the worst part, but we don't even realize that until after we think we've conquered it.

Thanks for sharing.

Hugs,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by LauraAnn »

It sounds like a pretty successful trip to me! I've only been able to go on " over nighters" with my comfort level. I know what you mean about other people ordering things you wish you could. The hardest one for me right now is when a fresh hot out-of-the-oven bread is placed on the table. Crud!!

Have you used Gluten Ease yet? I think it has helped when dining out and not so sure about the safety of the kitchen. :shrug:

Thanks for sharing.
Laura Turner
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"There is a crack in everything. That's how the light gets in". - Leonard Cohen. 1934-2016
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Erica P-G
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Post by Erica P-G »

Yes, thankfully not back to square one! Thanks Linda :wink:

It's like a Phoenix rising...you can't conquer it, apparently it keeps coming back! I'll keep winning some of the battle if nothing else. I may have had a moment of sadness, but hopefully I'll find my peace with it soon...it helps to visit about it here with those that understand, Thanks Tex :grin:

Yes I had my glutenease with me....but unless I'm misunderstanding how it functions I must be over thinking it, because I figured yes it will help break gluten down for me, no it wont stop the gluten from affecting me, and why add more ingredients to my gut in the form of that pill if I'm not sure if it is really relative or not at this point. If someone can scientifically enlighten me to help me understand my theory is right or wrong would be appreciated. Thanks for the kind words Laura, :hug1:
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Post by skp »

Erica,
I am excited for you!

We leave on Wed for a road trip from NC to AR and then to KS for a small family reunion. I have gathered food for our cooler and another bag of non perishables. Right now I am eating small bites of beef jerky with very few ingredients to see how it sits with my innards. The family reunion will be eating in restaurants with the challenge that will bring. I know that one is a burger type place, casual for lunch so I can get a hamburgers patty if nothing else. I'll take in a small bag of my gluten free potato chips. The evening restaurant has steaks so once again, protein and hopefully some well cooked vegetables. I refuse to let myself get uptight about it but just take it one step at a time, be very careful and concentrate on all of the non-food important things.

We are staying at the home of two friends and they asked for me to send a list of what I can eat. Ha! It's so complicated to explain it all.

Your emotional response in the restaurant is not unfamiliar to me. I've had it happen more than once and know it won't be the last time. Tears can well up quickly at certain times. Maybe we never completely quit grieving what we could once eat and no longer can. Two of our grown daughters and three grands were just here for a week; river rafting, swimming, etc. Much fun. One evening, no one wanted to cook including myself so the group decided on Indian food that we could bring home from the restaurant. Carry out. I watched everyone else eating curry and other wonderful dishes that I love. I sat at the table eating white rice and a banana and cold ham. Yep, a few tears started to surface before I snuffed them out.


Thanks for sharing,
Susan
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Erica P-G
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Post by Erica P-G »

Thanks Susan, I wish for a great trip for you, don't over think it :wink: I think you will do great!

On one hand it was a great feeling to be able to go window shopping again, without that ugly bathroom urgency that took up a good year of my life in 2015.

The task at hand is to have faith in myself that I know which diet items are good or bad for me and to make decisions based on the consequences should I choose to deviate from this knowledge. Not all the good foods are everywhere I am at times...that is when I have to be ok with being a minimalist sticking to what I have on me at the time and being ok with that. THAT is the tough part....no more dashing into a store and grabbing that snickers bar :wink: I used my google maps alot and checked in on places before deciding to go to them....Denny's and Cousins and the Mexican meals were the winners where I was!

Like you I LOVED curry....there is some Yellow curry here at work that I can have a little bit of....no soy, or gluten made with coconut and palm oil I believe....but too much spice hates me so when the chefs make it I taste it....but that's about it. Memories are great things until they start messing with the emotions....that's when it gets hard.

My mom made a comment during one of our meals and said, 'you know, you are eating like you did when you were little, very basic, bland and pretty much the same things over an over'.....interesting perhaps I just wasn't ever made to eat a diverse menu of foods in my life time :confused:
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Post by skp »

Erica,
It sounds like you work around food which must be difficult at times.

I'll keep Denny's in mind. Have never seen a Cousins. Like you, I find Mexican food can be okay as long as I avoid the beans, not much lettuce. The first and only time I tried it I ordered tacos but they were soft and I now know that those have gluten in them. I only ate a little but did notice a bit of a reaction, not bad but to be avoided. The chips and salsa were fine and I eat that sometimes at home.

What do you order at Denny's?

Susan
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Erica P-G
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Post by Erica P-G »

HI Susan,

The Denny's I've been to have had GF english muffins (probably have some egg in it though...but I'm picking my battles), the sausage patty seemed ok (but it could have had some nitrates in it...then again picking the battles) steamed red potato (was surprised at that one), and coffee.

I usually just do breakfast at Dennys....

At the Cousins they offered everything steamed and I had a grilled salmon, red potatoes and carrots. If you can have things steamed ask for it, that is ideal ;-)
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Post by skp »

Thanks, Erica. I, too, would only do Denny's at breakfast.

We are staying two nights with good friends in KC. I just talked to Dawn. Their teenage granddaughter was diagnosed with lymphedema after a gymnastic ankle injury. Interestingly, not only does she has to wear a pressure sleeve on her leg, hooked up to a very expensive machine at night, I think, but her diet is extremely restricted, more so than mine. I would not have thought diet would be at play with that. I'll have to learn more.

Time to feel grateful.

Susan
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Post by Gabes-Apg »

Erica
glad you had a fabbo trip (loved the photos on FB)

keep in mind that anyone travelling - change in routine, change in food etc will have mild changes/symptoms etc.
that coupled with the Adrenalin (nervous about safe food, and doing lots of fun things!) it is very normal for things to take a week or two to go back to 'MC normal'
Gabes Ryan

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Post by humbird753 »

Hi Erica,

It does sound like you had a very good weekend with your Mom. I know what you mean about smelling/seeing foods you used to consume and enjoy. I've experienced those emotions myself when out. I then remind myself how fortunate I am to be able to be out, and it helps me get through that moment. Thank you for sharing your experience, and also the restaurants you recommended.
Paula

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"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
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Post by Vanessa »

Erica

Thank you so much for sharing your trip with us. It is good to know I'm not the only one who has little pity parties for myself sometimes. I never stay there.....but damn. This is really hard sometimes. And no one truly understands just how hard unless they've had to do it. It's really tough to do the diet and still feel sick for soooo long. Thats where I struggled. "I'm doing all this and still feel so ill". Its a lot easier to stick with when you actually feel well!

Blackberry Margerita? Jealous! I'm so glad you and your mom had time together.
Vanessa
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Erica P-G
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Post by Erica P-G »

:circle: :pulsinghearts:

Thanks Everyone....

Susan - Yes I am an Office Administrator at a College Education account and although I don't cook the food, I smell, see and eat freely :shock: that is "what" I get to eat now....for 20 years I ate anything and everything that appealed to me...now the choices are alot harder to make.

Gabes - Thanks! Yes, I think I still have a few more days for body adjusting to take place. The only thing that I can say hasn't been affected to much is my energy level (this is huge in MC world)....BM trips are still an unknown when they take place, but no pain or urgency...I'll take it!

Paula - It was a good trip, I don't get many with her anymore, and she is in really great health - I think we need to prioritize this again :wink: So far most Denny's I have been to are decent on our MC needs, and the all steamed Grilled Salmon meal at Cousins was very good and I didn't react to it.

Vanessa - You have one of the Best Attitudes on this forum, and for you to still have ups and downs on a daily basis and continue to stay upbeat is HUGE! You Rock, and do not think you don't! That Blackberry margarita was probably one of the best blended drinks I have had and it has been a long time since I have allowed myself to partake in one, they are few are far between in this new life. :wink: I will keep trying to not put myself in situations that spur a pity party...it will be hard at times but I have to be ready for it to happen when in the presence of food....I tried really hard to have things with me that I know I enjoy and could eat or drink during times like this....but there are still holes in the plans sometimes, :grin:
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Post by Vanessa »

Hey Erica,

Thanks for the compliment but I was referring to back in the "day". Its a lot easier to have a good attitude when you feel well. Makes you want ice cream real bad too....
:pigtail:
Vanessa
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