About My Diagnosis

Fair warning: This is going to be a long, dense post as I try to sift through all the information as efficiently as I can. I want to explain what’s going on, as this has come out of nowhere for a lot of you and many of these things I never really talked about before. Also, when I announced my diagnosis the other day I was quite vague.  (I wasn’t exactly sure what to say yet.)  So I’m just going to connect all the dots and tell the whole story. Ready? Ok.

First I want to backtrack a little bit. When I was in high school (ok so maybe we are backtracking a lot…) I played sports: volleyball, basketball and track along with plenty of camps and training during the summer. I worked out on a daily basis, and although I wasn’t exactly a star athlete, I was in pretty awesome shape.

But there were a few warning signs that something wasn’t quite right. I was a long distance runner; a typical daily run for me was three miles. I began to notice that during these longer runs I would get really itchy, followed by headaches. I chalked this up to sweating, dehydration, you know the usual culprits.

One day at track practice I had an anaphylactic reaction. I had no idea what caused it, itchy palms, swelling of my face and hands, trouble breathing… I was prescribed an Epipen, it happened once more during a basketball game and then never occurred again. We never tried to understand what had caused the episodes. All I knew was that both episodes had two things in common: exercise and an emotionally charged situation.

I carried my Epipen for a few years, but after sports in college and plenty of exercise never triggered more anaphylactic episodes, I never bothered to get it renewed. So now I was in college, and I began trying new foods, guacamole was a favorite. Unfortunately, after a few encounters with my new friend, I began reacting negatively to the avocado. Eating it caused terrible abdominal pain that’s difficult to describe because it is unlike any other stomach ache I’ve ever had. It rendered me bedridden anywhere from twenty minutes to several hours depending on how much I ingested. I stopped eating avocado.

As time went on, more foods began producing the same reactions. Bananas were the next culprit followed by kiwi (that developed a few years later when I was pregnant with our first-born, Evie). During that pregnancy I also encountered another health issue. Late in my second trimester I developed a painfully itchy rash all over my tummy, sides and thighs. They blistered and scarred and were pretty much horrible.

My midwife thought that it was PUPPPS, but when it flared up after delivery and persisted, she was rightly concerned and thought it would be best to see a doctor. My doctor was totally unhelpful, did not suggest a biopsy and only said that there was absolutely nothing else it could be and no treatment she could offer.

It did go away on its own after a few months, but I experienced mini flare ups in between pregnancies and have had the same issue to varying degrees in all three of my pregnancies. I found that there is another condition, called Pemphagoid Gestationis (PG for short). It is a rare condition that looks much like PUPPPS but it is more serious, can affect the baby, and it is an autoimmune disorder.

I was in no hurry to be diagnosed, because my symptoms seemed quite mild compared to that of other moms struggling with PG. Mine was manageable without steroids (most cases are not) and a biopsy didn’t sound like much fun. What I didn’t know is that if you have an autoimmune disorder, it’s important to know about. They are serious conditions regardless of your symptoms. And once you have one autoimmune disorder, you are at risk for developing more.

As time went on I continued to find I was sensitive not only to kiwi and banana, but to many other foods. Eggs and any kind of fresh melon would cause a reaction. About six months after moving to Missouri our family went on the Whole30 diet to alleviate some tics that Stephen was experiencing. I also found, after eating clean for thirty days, that my food sensitivities were much better. As long as I ate in moderation, I could eat eggs and avocado and whatever fruit I liked.

In my naivety this was proof to me that I could get healthy again simply by getting my diet in order, that there wasn’t anything seriously wrong with me. It actually gave me the freedom to put aside maintaining that healthy eating while we were focusing on finishing the adoption. After all, you can’t eat Paleo while travelling in a foreign country with two small children! It’s just not practical. Or so I told myself…

And for the next year and half I had a plethora of excuses to not get our family back on track nutritionally. As you well know, we’ve had a lot going on. And my health began to show it. I went into pre-term labor with Kyrie’s pregnancy last winter, a known risk with PG pregnancies. I went on bedrest and we managed to keep the baby where she needed to be, but it took a huge toll on our family and on my health.

After Kyrie was born we were relieved. We thought the worst of it was over and healing could finally start for all of us. But more health problems were around the corner. I had a uterine infection a few days after the birth; I became very ill and had to go on a week of antibiotics.

We attempted public school as a way of lowering everyone’s stress levels. It was a bust. Jacob did very poorly in school due to his institutional history and they didn’t give us any good options for schooling Hope. I was beyond stressed, the amount of paperwork and meetings and planning we had to do for school only increased my work load and made life harder.

In April Hope’s shunt failed and she needed emergency surgery. By this point my body was totally depleted in every way. I was sick all the time. If I ate food it made me ill, if I didn’t eat I was sick. I was lethargic, couldn’t think, horrible mood swings and blood sugar crashes. I knew my stress levels were too high. I knew I wasn’t taking care of myself, and I knew that I had a lot on my plate. I didn’t realize it was anything more than that or anything that couldn’t be solved by addressing those external factors.

By July we were definitely at an unhealthy point. Something had to give. We needed to find a solution. I didn’t feel like we were at any kind of emotional or mental state to radically change our family’s eating habits to get us off the crazy cycles we were on. Let alone time! I had no time to do any of that! I was lucky to get PBJs on the table as it was. I started looking for simpler solutions.

Enter Plexus. An adoptive mama friend of mine was selling it. I saw awesome things about it. Most importantly, it works to balance out those pesky blood sugar levels. We dove in and tried it. Two days before it got to us I was having such severe crashes that I was not even functional by the afternoon. I was hurting and exhausted and had to lay down for hours at a time.

I went on the Triplex, hoping that would help me work through my digestive issues as well. The first day we went on it we felt like brand new people. It was amazing! I even felt motivated to eat better and my cravings were gone, my mood swings were gone, my depression was gone. I had so much energy. It was great. I remember saying “I’m so glad we started this, because things were getting so bad that I was about to head to the doctor to find out what was wrong with me!”

Two days after we found that miracle, life struck again and Hope was back in the hospital. This time it was a two week ICU stay and two surgeries. The stress we were under was incredible. My symptoms began to return. I assumed it was just the stress, when in reality the stress had triggered something much bigger.  (Stress is very bad for autoimmune disorders.)

Over the next few weeks I kept expecting my happy Plexus Self to return. That never happened. I could tell that it was helping me to function properly, but I couldn’t find that symptom-free person I was. I decided to start trying harder, eating better, exercising. The kids and I went for little “runs” around our parking lot and did fun exercises together. It was a great way to start and I felt a tiny bit better.

Then, on the second day of that, I had a terrible, itchy rash and a headache. I had had it the day before too. I tried to think back to if there ever was a time that I didn’t run without having a reaction. Never… in about a decade of running. My mind flitted through all of my history of symptoms from exercise-induced anaphylaxis, food intolerances topregnancy rashes… something was wrong.

I decided to go to my doctor, and she agreed I should be referred to an immunologist. The rest, as they say, is history. I was diagnosed with Hashimoto’s Disease, an autoimmune disorder where your body mistakenly attacks its own thyroid. The immunologist told me that over the last several weeks I had jumped off of a “hormonal cliff”. In other words, my thyroid quite suddenly just stopped producing any hormones at all.

Everything my doctor read in my blood work was exactly what I was feeling. Things began to come together and make much more sense. So where do we go from here? Next week I will be going in for a thyroid ultrasound to check for any suspicious nodes that could be pre-cancerous, as is a concern when your thyroid is so damaged.  As it is, my thyroid is incredibly compromised.  Fortunately, it is supposedly still at a treatable stage. We do not know exactly what the next steps will look like from here but I’m already making some changes that are starting to help. Stay tuned for that!

What We Didn’t See Coming

This is not the post I was expecting to write to you all today.  Next week was actually supposed to be our back to school week with all the frills and fun that that brings.  I had just finished concocting my weekly chart, and was so excited to get to use it.  I couldn’t wait to blog about it and tell you what our first full-fledged homeschooling year would be all about.

That post will still happen, just not today.  And my lovely school chart will be used, just not next week.  Yesterday life threw us a bit of a curve ball.  They seem to be coming one after another these days, which makes it so hard to tell you how we’re truly doing.  One day we’re great, and the next we’re devastated, and then we find our footing again before finding something new to stumble on.  This entire last year has been this way and it’s quite exhausting.

Usually, though, it’s a health issue with the kids or emotional setbacks or our car breaking down.  This time it feels different, because… it’s me.  Growing up I was always the “healthy one”, I watched my brother and sister go through allergies and asthma and all kinds of hardships.  The worst thing I ever went to the doctor for was a broken finger and strep throat.  I’m used to being healthy, and I’m used to taking care of sick and fragile people around me.

Now it’s my turn to be sick, and it’s not something that will be leaving me.  I have a diagnosis, a fun little medical label that now gets to follow me around for the rest of my life.  The doctor is anxious to get me on medication, supposedly medication I would need to use for the rest of my life.  I have specialists to see and screenings to be done.  I am out of my comfort zone friends.  Specialists are for my children, not for me… right?  Right??

I won’t lie… this is hard.  But hard is not always bad.  The truth is, I haven’t been healthy for a long while; I’ve mostly just been ignoring the warning signs my body was giving me.  The ever-fluctuating hormones of post-partum, along with the stress of the last year, have seemed to trigger my underlying issues and have caused a downward spiral in both symptoms and severity.  It got to the point where we could no longer ignore the issues, and we decided it was time to find out what was wrong.

I am thankful we went in.  I’m thankful we have answers, even if I am not happy about what the answer was, we knew it couldn’t be anything great.  Nevertheless, now that I have a name for my malady, I can start finding some tools to alleviate it.  I extremely grateful that it is treatable.  Sickness and death are a part of the fall, they happen to all of us.

I am not immune from this, and am grateful for the opportunity to remember that life is a gift, each day is precious.  Being reminded of one’s mortality can be a spiritually healing experience.  I rest in the knowledge that God works all things to good for us, and that He is already using this curve ball as a catalyst to healing in our home in more ways than one.

I know that you all are praying, and I am so humbled and comforted by that.  Love to you all.  More to come soon.

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