#TenThoughtsTuesday … Connecting All My Medical Mysteries

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Ten Thoughts Tuesday1. One month ago I was diagnosed with fibromyalgia, chronic fatigue and leaky gut syndrome. I’m kind of surprised by this but the most common reaction I seem to be getting is, “I didn’t even know you were sick.” That’s the thing. I am not sick. I function. I do what I need to do. I take care of my kids and finish my freelance work before my deadlines. My symptoms were so drastically different from what the average person saw of me. I often hide behind my smile.

2. I knew something was wrong. I’ve known for a very long time that something was wrong. I saw specialists for just about everything you can imagine, did blood tests and urine samples and MRI’s and CT scans. Gosh, I don’t even know how much money we’ve spent trying to figure out why my body is this way. I almost started feeling like it was all in my head. I asked my best friend on more than one occasion if she thought I was a hypochondriac. I have been mentally beaten, being told “everything is normal” over and over and over and over again. I don’t know how long that will take to heal. Part of me is still in disbelief. I say my diagnoses out loud and feel like I’m having an out-of-body experience, like I’m talking about someone else I know.

3. It was a year ago now that a holistic nutritionist confirmed for me that I had adrenal fatigue after I suspected I had it for nearly 6 months before seeking help. I made changes but none of the right ones. I was doing everything that made sense to me to fix the problem but little did I know, there was actually a much bigger problem dormant in my body waiting for that moment when my pot of stress boiled over.

4. I am so completely relieved. I know it sounds crazy. Most people extend sympathy or pity, prayers or sorrow. Guys, I’m actually happy. Having these diagnoses is the first time in my life that the way I feel inside was actually validated by a medical professional. I have a team of doctors who have ANSWERS. I’ve never had that before. I met with them again this week, one month after the original news and discussed all the positives but a few negatives too and without batting an eye, they knew what to try next.

5. Is this all hogwash? No. There is so much power in food. In just 30 days I have nearly completely reversed the symptoms I was experiencing from my conditions. Reversed. I have on more than one occasion now RAN further and faster than I’ve ever done before. I don’t crash at 2 pm. I don’t binge eat. My metabolism finally works to the tune of losing several pounds a week now that body has realized I’m providing nutrition for it and not starving it. (The leaky gut left me malnourished despite eating because the food was simply being attacked.) The dark circles under my eyes are gone. My skin has color again. My acne and eczema are gone. This is very real power in food.

6. Should you have an ALCAT test done too? This depends on how willing you are to change your life. If the test shows that you can no longer eat garlic or olive oil, would you be able to commit? If you test 200 foods and find out 63 of them are causing problems for you, foods that you ate without even thinking, spices like cumin or chili powder, vegetables like carrots or celery, fruits like grapes and pear? It’s not about getting rid of things that are just not “healthy” but more so about getting rid of things your body is attacking. This could easily be your favorite food. If you aren’t so desperate that you’ll 100% willing to change everything you’ve ever known, ALCAT isn’t for you. I was ready. I was already that desperate.

7. Yesterday I found out that my changes have not yet made a positive impact on my Interstitial Cystitis (a byproduct of all the other things I have going on.) I knew this as I was still experiencing those specific symptoms. To rule out that I didn’t just have a UTI, I had a urinalysis done and while there is definitely no infection, we were all surprised that under the microscope I have a large amount of blood coming out in my urine. This isn’t normal so I am trying a few new things to see if we can get it under control. We don’t yet know what is causing it but the assumption is simply too much detoxing going on at once and my poor organs need some extra help.

8. The hardest part so far has been the emotional impact. I don’t have cravings for food anymore. I’m caffeine free, alcohol free, dye free, refined sugar-free, gluten-free, and dairy free. The first few weeks was hard, really HARD as my body struggled with the withdrawal of not having some of these things but I hardly even notice anymore. Emotionally though, I can’t enjoy a piece of cake with my girls for their birthday today. I can’t go to the family Christmas Eve party without bringing my own lunchbox full of food. I can’t grab a hot dog at Costco when we are out and starving. I tend to feel like the outsider, like the freak.

9. This affects my family, not just me. Having an autoimmune disorder could mean a lot of things for my girls. It means their systems could be as sensitive as mine. It means their bodies could reject foreign items (i.e. everything from antibiotics to vaccines) in negative ways. It means Orange’s IBS could actually be from things I did during pregnancy not knowing how my body was handling it all. There are dozens and dozens of things it could explain. I am doing everything I can to focus on right now because I cannot predict the future, I cannot change the past and I cannot hold guilt for something I don’t have control over.

10. All the sudden, my whole life seems to make sense.

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5 responses »

  1. It’s great to hear that you are making such good progress. I was wondering what the ALCAT test tests for? Is that the one you had where they tested you blood against those 200 foods? I am interested in doing that to see if some of my metabolic syndrome (diabetes and its friends) is being affected by what I eat. Keep up the good work, and don’t feel alone, there are many of us out there that have to abstain in order to live a “normal” life.

  2. Good luck in the life changes you are making! Come January, I am planning to completely change my family’s diet to make it even more healthy. Slowly, I have been switching out different items we use for cooking for healthier options. I have gotten rid of caffeine, and I feel ten times better! It has been hard, but I am working towards being a better version of myself, and give our family a healthier lifestyle. Hopefully, it works. 🙂 Anyways, enough of my rambling. I hope you’re feeling better!

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  4. I know exactly where you are coming from! While getting a “life changing” diagnosis is huge, I’m right there with you that it was actually the most enlightening experience. You finally find out what is making you “crazy” (some Drs words, not mine) or just feel awful all the time. There is finally a reason why you feel like crap all the time, why pushing through the exhaustion doesn’t work at all (hey! I’m not just lazy, it’s called fatigue- chronic fatigue).

    It is also so fantastic to see how making changes (small or huge) in your diet can change so much within yourself. I feel a doctors diagnosis is a starting point on how to improve your life. (what?! My chronic decades long battle with ibs needs to be managed with 4 different meds, which all cause side effects that need other meds to control it?). Let’s try (after extensive research and another Drs opinion) eating gluten free. Amazing. Daily migraines? Gone. Bloating and nausea? Gone. Constant diarrhea/constipation battle? Gone. I can eat out now (though trickier being g free) without having to race home to spend 2 hours in the bathroom (tmi, I know).

    Anyways, I totally related to your post and you put into words exactly how I’ve felt through the ins and and outs of the past few years. My neuro was so shocked that I wasn’t furious at he diagnosis of MS i was given, and I happy about it? No. But, getting mad won’t change a thing AND, I actually thanked him for taking the time to cross all the t’s and dot all the i’s and hand me my diagnosis vs some of the responses from other Drs that have no business treating patients. Now I know there is a reason for all my crazy symptoms and I can move forward and try to be the best me for my kids.

    Thank you again (and sorry for my endless story)!

    Ashley

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