Saturday, August 25, 2012

Where Have I Been?

So, I posted some nice pictures, everything was looking so exciting and interesting, and then I dropped off the radar with my training.  What's up with that?

Well, I dropped off the radar because I haven't been riding much lately.  It's a shame, because I just had a breakthrough, and things were going so well.  But, then I had a setback.  Me, not the horse, not the training, but me personally.

So, I suppose it's confession time.  Followers of this blog will probably remember that I was badly injured in a fall (broke my spine), but that is not the full story.  I also have an auto-immune disease.

I don't talk about my disease much.  Partly because I have always tried to negate it's influence on my life.  I don't want it to define me.  But, also, I don't talk about it because it's awkward.

I have Inflammatory Bowel Disease.... Who wants to talk about that?  It's an ugly, icky conversation no matter how you approach it.  It doesn't help that most people don't understand it, either.

So, let's just get the misunderstandings out of the way right now....

Misunderstanding 1:  It's not caused by stress.  I don't need to just "chill out".  It's not "all in my head".  It's a real disease, with a real pathology.  My immune system attacks my own body.  If I could fix that with the power of my mind, don't you think I would have already?  C'mon... this is me we're talking about.  I've defeated spinal injuries.  If it could be cured with meditation and a positive attitude I would never have gotten the wretched disease in the first place!

Misunderstanding 2:  Yogurt will not cure me.  I don't care what Jamie Lee Curtis told you in that commercial.  Just shut up about the yogurt.

Misunderstanding 3:  This is not just a case of "Montezuma's Revenge".  Honestly, the GI symptoms are easy to manage.  It's the "secondary" symptoms that kill me.  Arthritis, fatigue, rashes, sinus issues... they all combine to make me extraordinarily miserable when my disease is active.  And the secondary symptoms persist long after the GI symptoms subside.

What I have is a chronic condition.  My body has decided to recognize parts of itself as an "invading foreign army" and it mounts a full defensive action.  That action involves destroying my stomach, intestines, sinuses, joints and skin.  There is no cure, and treatment options are limited (and mostly sucky).

Now, I'm not disclosing all that to garner sympathy.  Sympathy doesn't help me at all.  Mostly, it just pisses me off.  Everybody has something in their life that sucks and gets in their way, I'm not any different in that regard.

I decided when I was first diagnosed that this disease would not define me.  My disease is not who I am.  My disease is just a physical manifestation:  I am female, I have brown hair, I'm short, I'm skinny, I'm Caucasian, I have IBD.  Not a single one those descriptions tell you anything about who I am as a person.

I live on a farm.  I like photography and gardening.  I am an avid horseman.  Those are the things that define me as a person.  Those are the things that make me who I am.  Not my disease.

But, I can't say that my disease doesn't effect my riding.  It does, in insidious ways.

I found out last year that my spine was degenerating at a rapid rate.  The Orthopedist blamed it on my previous injury, I suppose because he didn't really understand how my auto-immune disease works.  My GI doctors also never said anything about how my disease could effect my spine, but I suspect that was because they didn't know, either.  Plus, I never mentioned my spine issues to them... it didn't seem relevant.  The Orthopedist knows about my autoimmune disease because it effects what kind of anti-inflammatory drugs I can take, but I never really thought to tell the GI doc about my orthopedic issues.  Until this year....

I finally switched to a GI doctor closer to where I live (I had been going to Philly).  During the initial exam he asked if I had any other medical problems.  I mentioned the issues with my back.  He nodded and said, "That's pretty common with your disease, your spine will most likely fuse eventually".  I was floored.  I had never put the two issues together before.

I was pretty upset and depressed for awhile.  Then I decided to be pro-active about it.  I'd gotten this far by just taking my meds and ignoring it, what could I do if I actively tried to change it?  I have a friend with arthritis issues who follows the Paleo diet with good results, so I started researching that.  In my research, I found a diet that was tailored to those with GI related auto-immune diseases.

And so I found the Specific Carbohydrate Diet.  The idea is that many auto-immune diseases are triggered by the over-abundance of sugars and starches in our modern diets.  It is very strict and totally different from my formerly pasta-centric Italian diet, but what did I have to lose?  I had hit rock bottom.  My life, as it was with so much pain, wasn't worth all the pasta in the world.  So, I cut it all out cold turkey... No more more pasta, no more potatoes, dairy, chocolate, rice, or sugar.  I ate only fresh, unprocessed fruits, vegetables, seafoods and meats.  And I felt great!  Seriously, I felt better than I had in years.

And then I got cocky and cheated.  I felt great, so I wanted to treat myself.  I had done so well in my diet, and surely just a bit of "no-no" food wouldn't hurt, right?  But, it did hurt, and my disease became active again.  And, when it did, I said "$*@%  it! If I'm going to feel bad, I might as well go for broke!" and then I ate other stuff that I shouldn't have.  

And that's where I'm at now.  I'm back on my diet and hopefully will be feeling better soon.

   

    "Let food be thy medicine and medicine be thy food"
                                          -Hippocrates



22 comments:

  1. Sounds difficult and unpleasant - best wishes and thoughts sent your way.

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    1. Thanks, Kate!

      It could always be worse... that's how I look at it, anyway. I'm a "glass half-full" kind of gal!

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  2. We are what we eat right?! How fortunate that doctor thought to ask you more about your medical history and make the connection. I sincerely hope a return to the strict diet will continue to make you feel better. You are a tough cookie!

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    1. We are definitely what we eat! I never really understood that phrase until I started this diet, but it's so true! I'm already starting to feel better.

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  3. I had to laugh at the yogurt comment. I've had more people recommend stuff like that for everything. It's the miracle food I guess. I like the stuff, but honestly,it doesn't cure everything. I hope this new diet you are on keeps the disease at bay. Don't cheat (easy to say, hard to do). I'm glad you are being proactive about finding what works for you. I feel like such a wuss complaining about my broken toes. Sheesh. Hang tough.

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    1. What's really funny is that one of the first things I was told after being diagnosed is to avoid dairy products. And then that stupid commercial came out and everybody in their brother was telling me I just had to go out and get that "special" yogurt! As if Jamie Lee Curtis and Dannon held the magical secret cure that years of medical research had failed to provide. *eyeroll*

      Complain away, my friend.... broken toes HURT!

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  4. My husband has IBD, and we're doing the specific carbohydrate diet, too. I remember reading the book and thinking, if just one doctor or nurse or anyone had told us about it, it would've saved him so much suffering. He's finally on the path to recovery. Except for the times he does what you described...making a bad food choice, then making lots more.

    I got chills reading this, because he's been seeing a chiropractor since...well, forever, and his back problems seem to be holding steady at best, sometimes getting worse. I always suspected they could be connected to his IBD. So thank you for posting this.

    I started a blog about the diet, and I've been posting recipes for things that freeze and reheat well. I've found if we keep quick foods in the freezer, he's less likely to give in to temptation and go off the diet. It's at http://scdfriendly.blogspot.com.

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    1. Thanks for the link! I'll add it to my reading list! I'm always looking for new recipes.

      I thought the same thing when I read the book, even more so after I started the diet. The only thing I've ever been told about my diet by the GIs is to avoid dairy.

      I had started to notice that my back bothered me more when my disease was active several years ago, but I didn't really make the connection until my new GI laid it out for me. I was devastated. But, I must say my back has felt much better since starting the SCD. My allergies are gone, too. That really surprised me, as I never connected those things, either.

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  5. AH Darling, you have just summed my everyday battle. I have not been diagnosed properly, but I have a kind of chronic colitis/IBS etc ...My intestines get inflammed ..badly with migraine vomiting and I was ALWAYS so drained irritable and tired bladibladibla

    For the last 8 years, I have cut out food by trail and errors.
    Last year I have found adiet is closed to the Paleo, Zoe Harcombe diet to be more precise.

    My battle is to keep at it... Especially because my husband does the main cooking and just does not get it. We just had a row. And to please I eat what he cooks, and I have a blazing headache and I am in very foul mood this morning...

    Don't get me started with the Yogurt, that has to be natural live bio. I cannot eat that stuff!!!! Last time I did, it was like having my bowels rasped with sand-paper and a terrible migraine!!!


    I am off checking out the SPECIFIC CARBOHYDRATE DIET, it is the first time, I hear about it. ANd I will get checked by a physio too. I did not know about the link between the 2 O_o !!!!

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    1. I used to get migraines, too. Haven't had one since starting the diet, partly I think because my sinus issues are gone. I'll have to check out the Zoe Harcombe diet. I'm always on the lookout for new recipes!

      My husband has been really supportive of the new diet. Not that he has a choice, I do all the cooking!

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  6. Thanks for sharing this with us. I am so glad you found a diet that works for you. Not a soul knows your body like you do and I'm sure your determination will get you back on track. I wish you well and hope you feel like riding soon.

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    1. Thanks! I figured there were probably others out there who have some sort of issue that they're dealing with and could relate. Health problems can be so isolating in part, I think, because nobody talks about them. So, it seems like you're the only one out there having problems. I figured that by sharing mine that maybe it would help other people not feel so alone.

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  7. I cannot tell you how glad I am that I read this post, and even more that you saw fit to share very personal issues with us, your faithful blog followers. Some of your symptoms mirror some of the strange issues that I have been going through myself, and really have been unable to find anyone to tell me what is wrong with me. Perhaps we have all been barking up the wrong tree. Then again, perhaps I am dealing with something totally different. But it gives me something new to consider and research, and have my doctor look into for me.
    Of course my biggest problem is that I live in Wyoming....have you ever heard the saying "Welcome to Wyoming, please set your watch back 20 years" Well it really is true.
    Anyway, thank you again for sharing this with us, and I truly believe that if anyone can find a way to manage it, it will be you!

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    1. It took about 10 years for me to be properly diagnosed. I saw so many specialists and was treated for just my symptoms for so long. It was really ridiculous. Auto-immune diseases can manifest in a lot of ways, and they're relatively rare (and probably under-diagnosed), so most doctors just don't have a lot of experience with them. I was finally diagnosed through biopsies of my stomach and intestines and blood work. Good luck!

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  8. Hey, Jamie Lee Curtis: All yogurt has live, active cultures. Otherwise it wouldn't be yogurt! Those commercials always annoyed me.

    I did not know that IBD impacted the body in so many ways beyond the GI tract. Thank goodness the Specific Carb diet makes a difference, because that is a relatively easy accommodation for your health when one considers all the pharmaceuticals on the market, not to mention their side effects. Are you allowed to eat whole grains (brown rice for example)?

    My husband and I are both allergic to sulfite preservatives (any sulfite compound and sulfur dioxide). We both get full-body hives and I also experience GI side effects. Once in a while I eat something that I know has sulfites (like licorice candy) and I always pay later. Other times we eat stuff by accident and end up with hives the next time one of us exercises. Sometimes we have had a reaction on the same day after eating the same meals, so we know it is food related. Diet is so amazing. We quit beef (gives my husband very painful heartburn), foods with sulfites and high fructose corn syrup, which I think of as the MSG of the sugar world. If I eat something with HFCS I want to keep eating nonstop. I usually crash later (literally fall asleep). Whole grains and foods high in protein have made us feel much healthier and with more energy.

    I hope that you continue to feel better and thank you for sharing your story with us. At least this mishap has showed you how much the Spec Carb Diet was doing for you. It was really working (You have refuted the null hypothesis! Your symptoms returned when you removed the special diet. Or close enough at least. No need for repeated trials, okay?).

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    1. Ack! That damned yogurt! It has so much sugar in it! Not to mention the lactose! It is not good for those with digestive issues.

      There is actually a book that goes along with my diet, "Breaking The Vicious Cycle" by Elaine Gottschall. The book talks about why we feel that need to eat nonstop when we consume polysaccharides. In a nutshell, consuming polysaccharides changes our entire physiology. You might find it interesting. The author is a biochemist.

      I will not be doing repeated trials, hopefully. It would be a lot easier if sushi rolls weren't so darned tasty, though.

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  9. oh no!!! i know how great you were feeling! sorry you can't cheat once in awhile and get away with it! now you know, i guess :P hope you get back on track soon - i'm sure spider misses you!

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  10. Hope you will be feeling better soon.

    I know you have tried many options, but I do go to a very good alternative medical clinic here in Central Jersey: AIMS Alternative Medical Services. Just wondering if something there might speed you along to keep you healthy. NJ Pain Management Clinic | Physical Therapy Clinic New Jersey ...
    www.aimsclinic.com/

    Sounds as if controlling your diet really helps. I am currently going gluten free but may get myself food allergy tested at AIMS again--it is a blood test called ELISA-- to see what else may be triggering some digestive issues.

    Also another alternative therapy is NAET. It's kind of like voodoo, but I had a vet do it with my cat and it made a huge difference in his licking and scratching--to the point where hw licked all his belly fur off. So, since cats cannot "imagine" a treatment works the way a human can, NAET might be a solution to any food allergies I may have.

    Feel better sooner than later. The good fall weather is not far away!

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    1. Thanks for that link! I'll check it out.

      I've never heard of NAET. I would like to try accupuncture, as I've heard it has good results with auto-immune diseases, but can't find a reputable local practitioner. That's the crux of my problem, really.. finding good local practitioners.

      I am eagerly awaiting the nice fall weather. I plan on competing in the Garden State Classic this year!

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  11. My body can't process a lot of stuff, so I can empathize with the diet restrictions. Its not bad at all for me, since I have been aware of my limitations all of my life.
    What I find hilarious are the reactions people give you once they realize that you have certain restrictions:
    1. "....What do you eat?" Air.
    2. "OH MY GOD I WOULD DIE." No you wouldn't.
    3. "You can't have dairy? Are you lactose intolerant?" No. Casein Intolerant: ".....what?"

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    1. Hahaha! I get the same reactions!

      "OMG, if you don't eat starches and dairy you will starve to death!!!!1!" Umm, thanks, haven't yet!

      "So, you can't eat pasta?" No. "You can't eat bread?" No. "You can't eat croutons?" Dammit! Those are all the same, you nincompoop!

      And don't even get me started on the people who don't know the difference between proteins and sugars... I can't have sugars, but I'm fine with the proteins. Example: I can have aged cheeses (no lactose), but not milk, cream or fresh cheeses. It never fails that somebody sees me putting some parmesan on my chicken and decides to "debunk" my entire diet and lecture me on my choices. Are you kidding me? Why do people get so offended about other's food choices?

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