Thursday, 15 March 2012

Support

I can't believe it's already Thursday.  Thursday!  How is it that Spring Break is just flying by when most weeks take at least a month to end?!

Anyway.

After my initial meeting with new bff Linda on Tuesday, I was so excited to find that there are plenty of foods out there that I can be eating, but haven't been.  That's probably not surprising since most foods don't fall into the (miniscule, narrow, tiny!) categories of meat, dairy, white rice, and plain oatmeal.  I had to utilize my highest level of self-restraint to not drive to the nearest HEB and buy one of EVERYTHING that I am allowed to have.  Although, I did buy a cauliflower.  And then I ate it.  And as sad as this may sound, I found it to be extremely enjoyable.

But let's get to the point, shall we?  When I met with Linda, she mentioned that she has a support group for people with FructMal*, and it meets about three times a year.  When is the next meeting, you ask?  Why, it happened to be yesterday evening!  It was pretty great timing, if I do say so myself (although I can't take any credit for the impeccable timing).

So yesterday evening, Matt and I headed over to the support group to see what new and helpful information we might happen upon.  My first impression upon walking into the room?  It was like an AA meeting for old ladies.  Seriously - I was the youngest person in that room by at least 20 years.  And those ladies are funny.  There was one woman who kept talking about french fries: "I loooove french fries.  I've never eaten so many in my whole life.  I eat them all the time because we can have them...they are just so delicious!"  If you read that with an incredibly thick Spanish accent, you were spot on.

Most of them had been dealing with the condition for years - seasoned veterans, if you will.  There was one other woman there who had been diagnosed around the same time as me, and we were like eager nerdy students on the first day of school.

It was very much like a discussion group - a time to ask questions and talk about the woes of flavorless foods.  I didn't realize how therapeutic it would be just to sit in a room full of people who just know what happens to my body when I eat certain things and who really understand how difficult it is to avoid everything considered dangerous.  I hardly had to say one word.  I realize I've only known about my condition for a few weeks (almost a month!), but one thing I really felt during those several weeks was that no one really gets it.  They can sympathize, but no one can really empathize.  Again, I really don't mind having the issue - I just know that not a lot of people can truly understand what it means for me.

I think Matt and I will attempt to eat out tonight - that is the biggest challenge of all, I think.  To find a restaurant that not only has a gluten-free menu but also does not use added sugars, high fructose corn syrup, or any of the various other things that make me ill will be quite an adventure.

Don't worry - I won't always post about FructMal.  In fact, once school starts back up, I doubt I'll be posting much of anything at all! ;)

*typing out the whole thing is hard.  I stumble around on my keyboard every time.  So...abbreviation!

Tuesday, 13 March 2012

My New Best Friend

I was given her phone number by multiple people, thinking we would get along just great.

I checked her out on the internet, and then finally plucked up the courage to make first contact.

Her name is Linda, and as of this morning, she is my nutritionist and my new bff.

I don't normally get all in a tizzy over going to a health-related appointment.  But this was different.  This appointment held the promise of more variety in my diet and a healthier and happier me soon to follow.  So I was counting down the days.

Linda was fantastic.  She sat with me for two whole hours and we talked about my diagnosis and what it will mean for me, pretty much for the rest of my life.  She has done a great amount of research on Fructose Malabsorption and compiled all her research into a nifty packet for me to take home!  Guys, this packet is amazing.  It's the packet of dietary freedom.  It's a packet of answers to all my questions, and I feel so relieved to have ANSWERS.  She talked me through the whole packet, step by step, and answered every question I could fire her way.

Gone are the days of only eating meat, rice, and dairy.  I can eat some vegetables!  I can eat some fruits!  I still have to be pretty careful, and I can only have things in small amounts.  But!  Still!  Better!

This weekend I also made a fantastical, magical, WONDERFUL discovery!  Not only are Sweettarts like medicine to me (because dextrose=maltodextrin=glucose=helps my body cope), but so are Pixie Sticks!  Fun Dip!  Bottlecaps!  Basically any Wonka candy that doesn't have corn starch or corn syrup listed as an ingredient is GOOD for me (aside from the whole tooth rotting thing...).  I always knew I liked that Wonka guy.  I've been munching on Bottle Caps like my nine year old self used to do.  Turns out my twenty-something year old self loves them just as much, if not more, than my nine year old self did.

I still understand that my eating habits will be changed permanently.  But my diet has been so strict for the past three weeks, right now it almost seems like the possibilities are endless!  I'm going to eat cauliflower tonight!  I think some days will be harder than others, but I'm okay with that.  And I have my new bff Linda to help me out along the way. (Did I mention she has a support group for people with my condition?  She does!  They share recipes and lots of great info.  Best thing is?  There is a meeting tomorrow evening.)

Saturday, 10 March 2012

Diagnosis - Fructose Malabsorption

When I last wrote, I mentioned that I would spend the majority of my Presidents' Day holiday at the doctor's office getting tested for a fructose malabsorption disorder.  I had planned my day around the appointment, since it was supposed to take four hours according to the paperwork they had given me.

When I got there, I drank this cup full of an extremely sweet syrup.  As the nurse described it: "It's like sweet tea...without the tea."  Theoretically, I would breathe into a device every 30 minutes for four hours and see if the levels of Hydrogen in my body increased or not.  After 15 minutes, I was already experiencing some pretty uncomfortable symptoms, but I brushed it off because it's never that easy for me.  Usually when I go to the doctor about something, they test me for a bunch of things and then end up saying, "Sorry, but we don't know what is wrong with you."  So I wasn't prepared for such a quick diagnosis!  I breathed into the machine the first time, and when she called me back the second time (one hour after I had arrived), she already had a pack of papers in her hand.  She had me breathe into the thing again, briefly glanced at it, and then handed me the pack of papers saying, "You tested positive.  Here is some information on the disorder, and here is what you are going to have to do."  She went on to describe the kind of diet I would need to be on to heal my body and alleviate my symptoms, and then she sent me on my way, three hours early.

That was almost three weeks ago, and it's been an interesting three weeks.  Despite the fact that my condition really limits my diet, I'm not really bothered by the fact that I have the disorder.  As a completely logical and reasonable person, I went to the doctor fearing the worst.  And by that I mean I had pretty much convinced myself that I had cancer.  So I'll take this over cancer any day!  I'm still relieved that's not what is causing all my problems.

Unfortunately, the information the nurse gave me on fructose malabsorption was not extremely helpful.  I immediately set out on my own internet quest to learn more about what was wrong with me and what my life would look like from that point on.  I quickly discovered that the information on FMD available on the internet was spotty, contradictory, and confusing.  I have an incredibly loving and supportive family, and they joined me in the search to find good information that I could rely on and really use.  Unfortunately, they pretty much found the same things I did.

Interestingly enough, though, we all noticed consistencies in the few websites that were helpful - none of those websites were created in the US.  Blogs, books, websites...all written by people living in Australia (with the exception of the one Canadian blog we found).  Matt and I have joked about this being a sign that we should move to Australia.

I think the biggest break so far occurred last weekend.  My parents met a woman at a farmer's market last weekend who gave them the contact information of the woman who heads up the Celiac Foundation for our area.  Apparently she also has FMD, and so there was hope!  I spoke to her earlier this week and she referred me to a nutritionist who has made her life a lot easier.  I spoke to the nutritionist, and y'all?  I am so excited about my appointment with her!  I am looking forward to being able to eat things other than just meat, rice, eggs, cheese, white potatoes, and oatmeal.  I am looking forward to someone who is KNOWLEDGEABLE coming alongside me and helping me figure things out.

And who knows?  Since this is Spring Break, maybe I will actually have time to post a little bit more!
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