Tuesday, April 14, 2015

My Wellness Journey, Part I: Background Story

I started this post almost a year ago. Lots of things have changed since I started drafting this story. I'm going to share a little (or a lot) bit of background about where I was and how I got to where I am now. This is going to get personal, but I want to be completely transparent so that my memories don't exclude the embarrassing stuff and so you have a complete picture.

I added the following preface before tweaking my diet, when this was going to explain my experience with Paleo. I decided to leave it, and it is still mostly true. Also, how ironic is the line about ice cream? (insert sob here)

* I don't necessarily like labeling myself as Paleo because so many people have different definitions of what that means, and it seems to create an expectation of perfectly sticking to a list of "good" and avoiding "bad" foods. I prefer a little more balance and moderation in my life. But it usually gives people a frame of reference and something to google. All I know is that I feel best when I eat this way, but no way am I giving up ice cream for the rest of my life just because it isn't Paleo. Also, as I use the word diet throughout this post, I mean diet as "what you eat" not "what you do when you want to lose weight." I did lose weight (only extra weight that I had gained), and I was hoping that eating this way would get me back to a weight that is more comfortable for me and a better weight for my body. However, this lifestyle change is 100% about being healthy and not in the least about being skinny. I would happily be at a higher weight if it meant that my health issues were resolved.

In general, I think that I had a fairly healthy childhood (even though I did have lots of chronic things like ear infections, strep throat, and croup), but I first started to notice things were off when I was 16. The first obvious thing was my cycle. I had been very regular since getting my first period at 12, but it started to become the norm to miss two, three, or four months. I also started to have constant breakouts on my shoulders, back, and chest. My PMS and menstrual symptoms got worse and worse, with painful cramping that would wake me up in the middle of the night, and I had my first "ovulatory" pains (that I always worried pointed to a ruptured cyst) sitting in study hall. The pains were different than what I experienced with other cramping. The pain would only last for 20-30 minutes, but it was painful enough that I could not stand up straight and my abdomen would be tender for a few days after. I can clearly remember where I was almost every time I experienced the pains: in class in high school, in the bathroom at a restaurant for my birthday dinner, in my dorm room, squated in the kitchen at a friend's house, etc. And I started to have a lot of issues with anxiety, mood swings, and depression. This continued well into college, and college also brought about some new health issues: chronic tension/muscle headaches, reflux (though I think I was showing signs for that earlier), and mysterious stomach pains. I didn't feel like myself for most of my college years, and I don't like a lot of the things that I see when I look back at that girl. I was tired all of the time. It was a struggle every day to get out of bed, even if I had had plenty of sleep the night before, and I often needed naps in the afternoon to get through the rest of the day. It was like I was in a fog, and I couldn't focus clearly on anything. I had a hard time connecting to the people around me, my anxiety made the demands of college and social interaction more and more overwhelming, and I felt completely lost most of the time.

Any time I had asked a medical professional about my irregular cycles, they brushed me off. It wasn't until Ryan asked one of his fellow counselors at Spring Hill about it and she encouraged me to go to the doctor that I decided to make my first gynecologist appointment. At my first appointment (in October of 2011), the doctor ordered several tests and gave me progesterone in the hopes that it would force a bleed (which it did). After a few weeks, I went back to my follow-up appointment. It was there that I received my PCOS (Polycystic Ovarian Syndrome)  diagnosis. I have learned so much about PCOS since that day, and although the diagnosis was scary and such an unknown, I still feel so grateful to have been diagnosed when I was. The doctor's recommendation was to use the Pill to manage my symptoms and regulate my period. But it also had it's own set of sideffects and repercussions. A few of the benefits, other than regulating my cycles, included clearing my skin and making it so I had to shave way less often (a weird but awesome thing that I miss very much), and lots of emotional things that I didn't recognize until I looked back (or until I went off the Pill and my symptoms started coming back). It really started to feel like the cloud was lifting, and I feel like my senior year at Cedarville, including that following summer and extra semester, was a taste of what my whole experience could have been like. I was able to focus on my studies, I was thriving in my jobs, I became a morning person, and I felt happy and hopeful about the future. But...

Soon after our our wedding, other symptoms flared and continued to get worse. The knots in my neck and shoulders and headaches were constant and painful. The reflux also became almost constant. There was an achy feeling in my throat most of the time, and sometimes it was bad enough that it made it hard for me to sleep. I made an appointment with an ENT to make sure that the reflux wasn't doing serious damage, and the doctor's only recommendation was to use a proton pump inhibitor. Also, My weight had steadily climbed to the point where I felt like a stranger in my body. My clothes were tight and uncomfortable, and I just generally didn't feel good. I was trying to be active and to be aware of what I was eating. That may have prevented me from gaining more, but I didn't lose a single pound. No matter what I did. I felt so frustrated, discouraged, and (while this might be a bit dramatic) betrayed by my body. I couldn't think of anything that I had changed enough to make such a drastic difference in my health. And saw myself as a "healthy" person, especially when I compared myself to a lot of the people around me, with eating a balanced diet and avoiding most processed foods. I didn't even realize how much I had gained until I stood on a scale in the doctor's office and heard a number that told me I had gained almost 20 pounds in the four months since our wedding. Lastly, my low (or nearly nonexistent) libido also started to take its tole on our brand new marriage. After a year of this, I knew something needed to change.

In December of 2013, after coming across several Paleo articles and blogs, I decided to try this lifestyle for myself. I had read about gluten and PCOS after my diagnosis and had read about the Whole30 experience of several bloggers that I followed, and it was Chris Kresser's guide about GERD that tipped the scales.

I committed right away, and I really stuck to Paleo guidelines 90% or more of the time. My headaches and reflux went away (except when I ate something I shouldn't) and my stomach aches (mostly) went away. I went off the pill and the weight steadily came off, except for the last five pounds. I wonder if the people in my life thought this was just another phase, but it wasn't. Eating and adopting other lifestyle changes fit in seamlessly with the kind of natural, holistic direction that I was moving toward.  And I was getting better! I had made a lot of changes and had seen quite a bit of improvement. But... a lot of my PCOS symptoms had gradually come back after going off the Pill. I had no appetite, my skin was terrible again, and my cycles almost completely went away (went off the pill in February of 2014, was a little late in March, skipped April, and then went from May to October, and then from October to February). I was feeling more and more anxious and overwhelmed and just exhausted physically, mentally, and emotionally.

Ryan and I decided before our wedding that we would wait to start trying for a family for at least two years. As I saw that milestone approaching combined with all of the issues that I had been experiencing, I really started to worry about feeling ready (as ready as possible) to start trying. I was constantly reading and researching and trying different things, but I felt a little bit like I was just chasing my tail. And I kept finding story after story of women who looked like me, who had been diagnosed with PCOS, and who were struggling to conceive or to carry a baby to term. I was starting to mourn over this broken body of mine and the heartbreaks it could cause, even though we had yet to start trying, and it terrified me. Finally, there were two things that told me I needed help. The first thing was my conversation with my gynecologist (the one I had been seeing since moving to Indiana). I told her about my cycles and my decision to go off the pill, and I asked her if there was anything that I could do to start preparing for pregnancy. Her response still makes my blood boil and also makes me incredibly sad. She looked me in the eye, shrugged, and told me no. She essentially said that not everyone's body works the way it should, that the definition of infertility was trying for a year without success, and that if we found ourselves in that situation then we would go from there and come up with a plan. She had no other advice other than to put me on a prenatal. I walked out of there extremely determined to prove her wrong. Second was my cholesterol. In October, I had blood work done for Ontario's wellness incentive program. I was excited to see how my numbers had improved after making so many changes to my diet. I was shocked when my numbers had barely changed. My bad cholesterol was still too high and my good cholesterol was too low.

Ryan and I talked and agreed that it was time to get some medical advice. I did some research and found Vine Healthcare and Dr. Ellen Antoine on the Primal Docs website. I felt so much hope as I read the information on the website, and I knew this was an investment that I wanted to make. I made a deal with Ryan that we would save our HSA money for few more months and wait until the first of the year.

My first appointment at Vine was on January 20th, 2015. In preparation, I had filled out a detailed medical and family history and symptom analysis. Dr. Antoine and I spent an hour together going over everything, and then I met with the nutritionist to discuss the "short term plan" that I would follow until we were able to go over my test results. I also had blood work done--15+ (I lost count) vials of blood. I left with my plan and a bag of supplements, and I felt both overwhelmed at the journey ahead but also hopeful and thankful to have this opportunity to get answers.

My Vine diet was fairly close to what I had already been following, with a few differences: no beef, pork, or shellfish; no eggs; legumes were allowed; only one piece of fruit per day. And there were no exceptions allowed. I texted Chris and joked about how I used to think the Whole30 was hard. And as far as the number of things that I could eat, it was harder, but emotionally and mentally this was so much easier. And that feeling hasn't really gone away. The only times that I really wanted things I couldn't have was when I had to watch everyone else eat it, and I think I will always have a hard time with feeling high maintenance because of all of the things that I don't or can't eat. It can also be very difficult to eat out and leave feeling full, since my diet is so far away from the standard American diet (SAD).

I went for my second appointment on February 26. I had been encouraged to bring Ryan with me, and I was glad to have him there to hear all of the results. Right away the doctor went over all of the results with us. Here is an overview of everything they found:
  • Allergic to cow's milk
  • Numerous IgC (delayed hypersensitivity reactions) to lots of foods, which indicates intestinal permeability (or leaky gut). Grains, gluten, nuts, and seeds (in addition to diary) show a pattern for negative response. 
  • Stool analysis showed lack of beneficial bacteria and overgrowth of additional bacteria (including candida). 
  • Immune level slgA is very high indicating that the immune system is working hard. (Normal level is 50-200 and mine was almost 900)
  • High need for vitamin C and alpha lipoic acid
  • High need for B1 and B6
  • High need for zinc
  • Moderate need for B3, B7, B9, and B12
  • Moderate need for magnesium
  • Moderate need for omega-3 fats
  • Lysine deficiency 
  • High need for glutathione 
  • Moderate need for plant based antioxidants
  • High need for methylation 
  • Moderate mitochondrial dysfunction and toxic exposure
  • CoQ10 is high
  • Borderline low on most elemental minerals
  • High bad cholesterol (LDL) at 165 (should be less than  100) 
  • Too low good cholesterol (HDL) at 55 (should be at least 60)
  • LDL-P much too high at 2000 (should be less than 1000)w
  • Lp(a) indicates increased risk for stroke and cardiovascular event
  • Lp-PLA is higher than ideal and increases risk for stroke
  • Liver enzyme is elevated at 44
  • Methylation genetic mutations (MTHFR) with both copies of both genes mutated
  • ApoE3/E4 gene places me at increased risk for cardiovascular disease and Alzheimer's 
  • Vitamin D is low at 20 (should be 60-80)
  • Testerone is slightly elevated at 50 (ideally 30s-40s)
  • Progesterone level is lower than it should be
Whew. 



I'm now on the "long term plan," that will last about 6 months. This involves continuing the strict diet and lifestyle that I began in January, with the removal of lots of other foods and the addition of lots of other supplements. I'm already getting tired of being so limited in what I can eat, and it takes work to keep track of all of the other supplements and lifestyle things that I should be doing each day. And no babies until I get the all-clear from my doctor. Meh. One day at a time. Some of the supplements will go away, and some foods will hopefully come back, but a lot of the changes I'm making are going to have to be lifelong if I want to maintain the health I will have gained.

As far as how I'm feeling now, I still know I have a long way to go, but here are the things I have noticed:
  • My skin was one of the first signs of improvement. The acne that came back after going off the Pill has vanished. It's amazing to me to see my skin so clear, with no sign of the acne that was there only a few months ago. I'm very happy to see it go.
  • The last few pounds that stuck around are gone. I'm being more intentional about exercise, so my weight will most likely continue to fluctuate as I hopefully lose fat and build muscle mass. 
  • I'm sleeping more soundly and without waking much. But I still need to work on getting more sleep. 
  • I have noticed my anxiety level being much, much better in certain situations. For example, I noticed that I barely reacted to the traffic when I traveled to and from Ohio last month. Certain areas used to leave me shaking and in a near-panic. 
  • My hair is growing!! Slowly but surely, my hair is growing, and I have baby hairs sticking up all over my head to show for it. 
  • My stomach aches had significantly decreased after adopting Paleo, and they have become increasingly rare. I can only think of two times I experienced them since January. So I'm not sure if they are actually always caused by WHAT I am eating, but maybe how or when? 
I occasionally get discouraged that I don't feel AMAZING (how silly am I?), but I know this is a process. Dr. Antoine said that she always tells her patients that for every year that they have been sick, they should expect to take 2 months to recover. And I'm in for the long haul. 

I decided to go to Vine when I felt that I had done all that I could do on my own and that I needed answers. I wanted to be as healthy as I could be before starting a family, and I also wanted to minimize our risk of infertility or miscarriage. The tests uncovered so much more than I expected. This is definitely turning into a lesson in patience and trust. I still don't have all of the answers, but I do feel very blessed to have a better understanding of what is going on inside of me and to be able to start doing something about it. I continue to pray for healing and that God would give me and my doctors wisdom as we navigate all these things. His is faithful. To Him be the glory.

I'm going to leave it at that for now. I would love to hear any questions that you have. I have often felt alone in this journey, so I would be happy to share with anyone who is interested. :)

I do want to end with something that I read on MTHFR.net. This is how I'm choosing to feel about all of my results:
"Let me say one thing and hear me clearly:
Knowing if you or a loved one has the MTHFR mutation is a blessing. It is not bad news. It is very positive.
Why??
Because knowing you have it means you can do something about it!
Let’s get to doing something about it."


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