Tuesday, June 4, 2013

Marisa's Menu: Running on Fumes

Marisa starts her Gluten Free Health Challenge with the post that resonated with so many readers. She entered the contest to become part of this challenge, and was chosen as one of three winners. The following is what she shared with us all.

Marisa will be posting her journal entries on the first 3 Tuesdays of every month from now until December. During this time, she'll be receiving free health coaching from Eryn McEntee, a naturopathic student in her final year of study, and Iris Higgins of Your Fairy Angel

Also, check out my new feature, the weekly Mind*Body*Spirit Exercise. I'll be updating it with a new one every Monday. 

Thanks to much reflection prompted by some very inspiring posts from various outspoken bloggers and their followers throughout the last few years, I am finally realizing the benefits and necessities of being "public" with things I have held as personal and private. I am, and have been 100 percent (to my knowledge - not counting cross contamination) gluten free since January 1, 2010. But my journey is far from over, and the challenges continue to present themselves on a regular basis.

My dedicated and wonderful partner (who is still waiting for me to marry him because I keep putting it off until I feel better) has been TELLING me this from the beginning. "Reach out to the online community. You may find more information, support and resources than you ever imagined." This is what rings in my head. He now insists "you need to do this gluten free challenge." Sigh.

I tried and tried. And I took many passive steps, even starting my own blog (which I, of course, kept private because of my severe privacy issues).  But at this point, as I read the Daily Dietribe entries, something finally clicked for real. What do I have to lose? I can tell my story. Because not only could I personally benefit from doing so, but there is the possibility that MY story could ultimately help someone else. And that would make so much of the struggle worthwhile.

I am much too wordy of a person to encapsulate my story in a concise manner. And my thoughts are so scattered (can I blame gluten?), that I seem to forget what I am typing in the middle of a sentence. But the gist of my rambling reasons for wanting to take this Gluten Free Challenge are as follows:

* I have been sick my entire life; with each passing year a new symptom, disorder, or confusing condition surfaces. Everything from chronic ear & sinus infections (which I gleefully have rid myself of after cutting dairy out of my diet), unexplained nausea, anxiety, Grand Mal Seizures that were left as undiagnosed potential epilepsy, Endometriosis, periods that last 15 days, with a horrific 7 day stretch of PMS, Migraine headaches, unexplained Autoimmune disorder symptoms (they kept testing for Lupus - always negative), thyroid disorder, and a whole host of hormonal and skin issues galore.

* I spent the good part of my childhood and my 20s being prescribed medicine. I still believe the seizure medicine took a part of myself that I will never get back. My Mom still says I never acted the same after I was on it. I felt senile at age 21. I am so glad I eventually took myself off of the meds. At one point, I had a pill box in my purse that was bigger than anyone's grandparent's. Between being on birth control continuously in an attempt to stop my periods (and fix the Endometriosis & ovarian cysts), plus the migraine & seizure meds, plus a daily antibiotic that was prescribed for a severe case of ocular rosacea that made it so bad I could barely open my eyes or see most days -- there were random other prescriptions. They even insisted that Prozac taken the week before my period would stop my unbearable PMS. And at one point I was given a prescription for Accutane (which THANKFULLY I never filled).  

My health issues have impacted every aspect of my life.

Education:  (the seizures started in college). I went through this without insurance, and ultimately ended up just quitting so I could work a full-time job with health insurance. By the time I realized how detrimental this was, I was beyond the point of even wanting to finish the program I had started, AND they had eliminated it from the school I had attended. And once I was in a place where I could actually truly go back to school, I was so lacking in energy that I only made it through 3 semesters. 

Relationships:  I have no idea what I was doing or saying during certain parts of my life. I was on high anxiety alert mode most of the time thanks to what I can only suspect was blood sugar imbalance. I know that a lot of what I reacted to in my teens and 20's was purely fear and anxiety based. That saddens me now to realize my quality of life was so poor, and that I most definitely dissolved more than one friendship in the process.

Quality of life:  I have to say first, I am very grateful for the jobs I have had. I currently work for an amazing company, who has offered me everything I ever needed, and kept me insured, able to pay for my many different health provider costs. But would I have landed in the industry I am in now by choice? Absolutely not. It is the opposite of where my heart longs to be. But it is a means to an end, or so it seems. There is not one part of my job that is creative, and that chips away at me every single day. And I also feel like I don't get to use the part of my brain that wants to flourish. So it seems like a waste. But again, I do not have a degree, and it *seems* impossible to move forward when I am not feeling 100 percent.

I miss out on things. I sometimes push myself to do stuff I no longer have the energy for. And I usually regret it. Sometimes it seems almost worth it to feel a taste of living life to the fullest. But 99 percent of the time I end up setting myself back from a wellness standpoint, which really is not worth it.

I LOVE FOOD.  Eating out with my partner and taking trips to destination meals were among the highlights of the initial stages of our relationship. I had finally found someone to share these experiences with.  But that came to a bit of a halt once I realized I had so many food intolerances. I have been cursing gluten on a regular basis for ruining my social life. How DARE it be so rude and cruel. Does it not know how much breaking bread with other people meant to me? These social eating experiences were a huge part of my identity, lifestyle, and my relationship with my partner. Taking away the ability to freely do this felt like someone had taken away all of the fun and enjoyment from my world.  

I get great enjoyment from learning about food, eating said food, and then analyzing, describing, and sharing those details with others. But when your diet only consists of a handful of ingredients, this whole experience seems lackluster and almost unattainable at times.

So.......how and when did I go gluten free?

* The Great American Beer Festival 2009 in Denver, CO. By far the weirdest case of dizzy spells, nausea, and overall just feeling horrible that I had ever experienced. I could not figure it out because I did not drink a large amount. I was not "drunk" or hung over. I could not explain how I felt - other than I could not function, and needed to spend the remainder of our trip lying on the bathroom floor, assuming I might die soon.

Per a friend's suggestion, I visited a wellness center not too far from my house. The chiropractor there talked with me for over an hour, and sent me home with some reading material and a suggested diet.  

At that point, I cut out dairy and soy. And I felt better. Not 100 percent - but better. NO more respiratory issues. Success!! But my anxiety was off the charts still. WTF was going on?? I also had gained 35 lbs, which for me was extreme. I am a tiny, small boned person, who pretty much had weighed the same thing forever. No matter what I did, I was NOT gaining any muscle (in fact, I seemed to be losing it). I just kept getting bigger & swollen looking. AND MY SHOE SIZE WENT UP from a 7 narrow to an 8.5 W.  Not one doctor could explain that. I could find nothing online either. Pregnancy was the only reason for shoe size changing, or dropped arches (I even went to a podiatrist). Nothing was making sense. Everyday upon waking, I would feel like I had been run over by a semi truck, and could barely lift my body from the bed. And the dizzy spells and nausea were still randomly striking.

I eventually went to a psychologist to work on my test anxiety because I so desperately wanted to go back to school. Somewhere in our discussions, he suggested that I may have a blood sugar issue. He also mentioned an integrative medical center in the area that might be helpful. I took his advice. I saw an amazing doctor (an M.D., who opened an integrative practice - and she looks at all sides of a situation, involving every type of potential treatment available). The first thing SHE did was put me on an elimination diet.

I feel like the Great American Beer Festival of 2009 plus the elimination diet per Dr. Jane Murray at the Sastun Center for Integrative Health were the TWO major factors in my official transition to GLUTEN FREE.  

When I went on the elimination diet, I lost 12 lbs the first night. And within a week was back to my normal weight. When I got around to adding wheat back for the challenge on the diet, I gained 8 lbs overnight. I did not have as severe of a reaction to the other forms of gluten. Wheat was by far the worst. Barley was moderate. But nightshades...sigh...the worst. Something made sense, this weight gain and body pain was SWELLING caused by inflammatory trigger foods. And this "weight loss" was not about the weight. It was swelling. I could have cared less what the number on the scale said. It was the fact that I felt like I was carrying around overstuffed backpacks every minute of my life. It was painful and tiring. Not to mention, it became a financial issue that I somehow had to find clothing in every single size because depending on the day, my clothing would range between 4 different sizes. I pretty much figured the best bet was to buy a lot of stretch jersey knit.

So other than the anger, frustration, and feeling of being overwhelmed, I was actually pretty happy about these findings. I finally had an ANSWER.  

* My first year of being gluten free was like magic. I felt better than I had in years.  I went from having at least 3 migraines (each lasting a minimum of 3 days) per month to having only ONE migraine the day before my period. Seizure free AND off the meds completely. I maintained my normal weight -- which felt right to me. When I had gained the weight, I wasn't concerned with my appearance as much as I FELT HEAVY. Before taking out gluten, I had a hard time walking up the stairs, and my entire body just "hurt" all of the time. I was actually getting massages weekly, and would usually only feel better for 24 hours, and immediately wanted another massage. 

My ocular rosacea (that I had been on low dose daily antibiotics for) completely went away. My skin cleared up. My overall intense skin itching ceased. My FEET went down not to a 7 - but a 7.5. (I was pretty pissed though because I had finally given up and gotten rid of all of my shoes per the advice of my therapist, as well as most of my smaller sized clothing). Not being swollen every day really does improve your quality of life.

For about a year LIFE was pretty GOOD. Emotionally I was somewhat angry about what I could not eat. And I am still to this day a nightmare in the kitchen. So the struggle of having to prepare most of my own meals was, and still is, one of the most difficult parts of this transition for me.

Sadly something happened around that year mark of being gluten free. My hormonal stuff was returning, some skin issues were surfacing, the eye issues had returned, and my energy levels were significantly declining. And the one thing that never seemed to improve was my ability to build muscle. I was going to yoga daily. I walk a lot. And I was making a very conscious effort to eat protein. I even gave up my 10+ years as a vegetarian and added grass fed meat. I had to add something , with everything I had removed. And I also wanted to try it on the challenge to see how I reacted. And the crazy thing is, I had stopped eating meat years ago because I thought IT was a culprit. But so far, the type of meat that I have chosen to eat on my new gluten/soy/dairy/nightshade free diet has not caused any bad reactions. But even with this new "diet", I was frail, lacking muscle, and extremely weak. 

My own interpretation (with the guidance of Dr. Murray) of what was going on at this point was that I was not absorbing things properly. Leaky gut? Most likely. And to this day, I am still not fully absorbing. When I am tested, I show up as deficient in Vitamin D and magnesium. Taking supplements does not work. I end up paying out of pocket to get IV infusions of my vitamins and minerals straight into my veins now. It doesn't last. But it gives me a boost for a few days. If I could afford it, I would probably go once per week. But as it is, I have had to take a huge pay cut at work. I finally broke down and asked if I could cut my hours. My body simply was not capable of working the schedule I had been working for the past 7 years.

I even was on a full GAPS diet protocol for 6 months in hopes of healing my intestines. I am now doing my own modified GAPS. I eat as grain free as possible, coupled with fermented vegetables, bone marrow broth, AND probiotics. In my opinion, everything I do is a huge pain in the ass, and maintaining this lifestyle is exhausting in itself. So if I am going to have to live like this, and put so much thought into basically my every move - CAN I AT LEAST FEEL BETTER AND BE HEALTHY?? I am gluten free damn it. So what now??  

I have my ups and downs. I am proud of myself and thrilled to be healing myself with my diet. But at the same time I am lost and scared, wondering if or when this is ever going to end. Am I doing any or all of this in vain? Am I missing a key piece of the puzzle? I consider myself to be very self aware. And I listen to my body. But I am so far deep into this mess of intestinal chaos that I wonder if I need to step back and get some perspective again. The worst part is that I don't trust anyone. I can only trust myself to get well. I do seek outside resources very carefully and with hesitation. But I clearly was burned too many times in the past to ever blindly trust someone when it comes to my health.

I just want to be healthy. I feel so fortunate that much of the knowledge I have gained and some of my own experiences have ended up helping friends who come to ME for support with their own issues. But I feel broken and tired. And I wonder how am I going to be able to continue to help others if I can't even fix myself. Or is that just the way it is going to be? I CAN help others. But do I need to just accept myself the way I am, and stop obsessing over "fixing" things? I don't know if I can do that. My psychologist told me last year that one of my biggest issues is the fact that I have too high of expectations. He said that I feel I am "entitled to good health." He was right. I did, and I guess I still do. And I need to stop feeling that way. I can want it and seek it. But I can't "expect" it simply because I have done everything in my power to obtain and maintain it.  

But what CAN I do? I have a lifetime of stories, experiences, and lessons to reflect upon. I also have a dream of going back to school, being able to some day help other people in a professional capacity, and living my own life fully. But I need my energy back. I need my body to work WITH me on this journey. I am putting in the work, time, effort, and a ridiculous amount of dedication. But I am NOT feeling substantial results in return. HOW DO I HEAL MY INTESTINES? How do I start absorbing 100 percent of the nutrients from all of these whole foods I am purposefully eating? And how do I keep myself motivated on an emotional level in the process? I don't want to lose patience or perspective. But I feel that may happen.

My recurring nightmare is:
I CAN NO LONGER EAT ANYTHING, even greens. That is my fear.  I wake up every day hoping that I don't encounter another food intolerance or allergy. The most common question I get in eating situations is (and they usually decide to just ask my future husband versus asking me), "Well, what CAN she eat?".

My most recent intolerance has been hemp and other seeds. This is ridiculous. When does it stop. You see - now the anger is setting in. This is one of the ups and downs of this process. And how did I figure out I had a reaction to hemp? We were on a trip to Minneapolis, and my feet started hurting. It kept getting worse. It reminded me of a prior trip pre gluten free days where I was basically crippled in Chicago. Turns out it was because my feet were just swollen so bad that my shoes were strangling my feet. So again I had make a trip to a DSW during our vacation, and spend money we didn't have on new shoes in a bigger size.

IT IS A FULL-TIME JOB JUST BEING ME. And a really hard job at that. Am I whining? Maybe. But it's true. I am exhausted most of the time. I do need some help. I did not ever want to ask for it. And I feel inadequate saying it in a public forum such as this. But at this juncture in my journey the time has come to reach out. I'm at my wit's end, folks.

I am stepping into some very uncomfortable territory. But I am ready to take this challenge. Gluten free and beyond is my challenge. I don't want to lose any steam (which is barely running on fumes at this point), and I am longing for a new perspective and some guidance.


Katie said...

I just wanted to you to know that you're not alone. i could have written much of this post myself. While I don't share all of your symptoms, I have many similar symptoms, and so many of the same feelings. My diet is down to just a handful of foods, and I often wonder when I should just stop trying to heal and just accept the situation. It's a hard thing to think about. I'm married with a 4 year old, and my husband wants me to keep pushing along, but lately, I feel like just throwing in the towel. If my limited diet isn't healing me, then what's the point? I know I'm nutritionally depleted and just don't have the energy to do the things I used to do. I avoid social situations because they almost always involve food, and I just don't have it in me anymore to explain my situation or answer questions about whatever meal I've brought for myself.
Anyway, good for you for taking on this challenge. I truly hope it brings you some peace!

Marisa said...

Thank you for your comment Katie. Yep, I know that feeling of wondering if you are going to continue to seemingly NOT get better, why on earth are you only eating 5 things. It just feels futile so much of the time. And the lack of energy makes it even worse. I am SO grateful for the opportunity to be a part of this challenge, and have ALREADY acquired some unexpected energy simply from having the support and encouragement that this challenge has provided us all with. Sometimes just knowing I am not alone really does help. I hope somehow this all can bring you peace, too.

mel m. m. mccarthy said...

I'm on the same page as you Marisa, and Katie. Your words brought tears to my eyes. Thank you so much for sharing your story. I am so looking forward to following along with you. (There just HAS to be more answers!) ;o)

Delicious Alternatives said...

Wow, this is amazing, I read it and you sound like me. I to have been sick all of my life. Diagnosed with Chronic Fatigue Syndrome, allergies, environmental allergies. migraines, anxiety at age of 18. I am not 47. So similar. I tried supplements, meds, IV's- I reacted to them all. I reacted to the IV bag even. I finally found an energy medicine doc who led me towards hypnosis, it has helped. I also found a good doctor who tested and retested my hormones and as I mentioned I think to Stella, read Dr Sara Gottfried's new book The Hormone Cure, our hormones rule everything.
Did your seizures stop when you went off gluten? To me there is a link there. Also environmental allergies can cause a lot of what you have been experiencing. Do you live in a healthy home? have you checked for mold? Do you use fabric softners? Once I started to reduce my chemical exposure I got much better. I got rid of EMF`s in my home, my cordless phone, gone, my cell gone, my wireless gone. went back to the old fashioned phone and direct link for my computer. Happy to chat with you if you think it will help. I know that longing for wellness and don`t wait to get married. I was like you and waited- live life now, in the moment, even if in that moment you don`t feel well, it is the only moment we have. Love him, let him love you, laugh, cry, do it together. Keep the faith, I am living proof we can figure this out!

Dorothy said...

Marisa, Where to start. First thank you. You are such a good writer! And I love the photos of you. Lots of style and charisma! OK, about what you wrote. I actally copied down a number of sentences you wrote because they articulated exactly what I experienced after I moved here to Washington. And you described it so well. Your post helped me put my life into perspective. Yes, I have had a rough time of it for the last couple of years, but nothing compared to your experience. And reading about Shannon, Amy and Rebecca, it helps to inspire me, to heal me, to put my life in perspective. We are all going through a sort of shared experience, aren't we. Like you, I too expect and demand good health when I eat health and take care of myself. Honestly, until I read your post, it never occurred to me that this might not be the case. Hello Dorothy! I'm not going to take that foregranted any more. I think it's great you are in a loving, supportive relationship. That's inspiring too. Keep on sharing Marisa. We need to hear it! I need to hear it! I am totally rooting for you. Big hug, Dorothy

Stella S said...

I totally get the "going public" thing. So props to you for putting yourself out there.
I wish I had even a small clue as how to help or cure you...but I don't. All I can offer to you is my ability to listen and offer you honestly felt words of encouragement.
Someone, somewhere out there, has the answers you seek. Lean on us while you are making this journey to be whole. You are not alone, you are never alone.
Healing love sent to you.


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