Tuesday, October 4, 2011

Where to Start?

It’s hard to even know where to begin.  I remember the excitement of getting a diagnosis for Rebecca, and then the discouraging feeling when I began to read and research and couldn’t come up with any very consistent information.  I remember reading and reading and trying to put it all together … even now I have to keep reading and trying to understand since it’s a disorder that continues to change as more research is being done.  What we thought was okay at one point is no longer considered okay (e.g. rye) and what we were told to avoid before might be said to be allowed now (e.g. green beans).  But in the end they can say all that they want but it it still comes down to your individual sensitivity which can just leave you thoroughly  confused as so many things can factor into that sensitivity (sensitivity to other foods, medications, other illnesses, etc).  It’s been over a year of seriously trying to figure out my diet and I’m still very confused at times.  I know this sounds discouraging, but I also know that if I were a bit stricter I might be able to put a better finger on things.  At the same time I also realize that I have Wacko Steph Syndrome (which simply means nothing with me ever makes sense or follows the books) so I’m not a very good example.  Everytime I think I have it figured out something else changes things making me feel discouraged and lost (e.g. a recent change in medication).  I just *sigh* and keep trudging along reminding myself that while I don’t have it all figured out I’m a long ways ahead of where I used to be and this means I feel better then I used to.  Focus on the positive and deal with the negative.

That all being said I have to say that I do not have an extreme case of fructose malabsorption (FM).  I would say that in our house we are moderately sensitive.  We would be most sensitive then those who are mild and just have to avoid the worse fructose foods, but we are not so extreme as some who have a very very limited diet.  We are able to eat a good variety of food, especially since we removed wheat from our diet.  We found that wheat (fructans) was our biggest issue and once we removed that we were better able tolerate more fruits and vegetables.  So while we’re not the mildest case we are definitely not severe.  People who know us may think our diet is difficult and we have some severe sensitivity, in comparison to the many other FM people I have heard from, communicated with, I know that we have it pretty easy.

As I write my blog I want to remind people that I am not a doctor, I have no medical background and am not very good at understanding biology … although I have certainly had my abilities tested and trained in this area in the past years.  I am simply a FM sufferer and mother who wants to enjoy eating while keeping unwanted symptoms away so that we can feel healthy and enjoy our life.  My goal is to simply have a place where I can store information, for myself to go back to and for others to learn from.  A place where the information is gathered.  I realize that it is always best for one to do their own research, but this will provide a starting base and as much as possible I will try to provide links so others can read and learn from what I have read.  This will help me to remember where I found information as well.  So often I read something and keep it in mind when trying to figure things out, but then can’t remember where I read it to refer back to it. 

Welcome to my blog.  I am going to assume that since you are here you, or someone you know, has FM.  I am sorry that you have to deal with this, but with time you will better understand how to eat healthy and what your body can tolerate and this will help you to feel better.  It may seem overwhelming at first, but with time you will get a grip of it and feel more confident in determining what you can and cannot eat, what you can tolerate, how much you can tolerate, etc.  While FM sucks … it is manageable and treatable.

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