01.28.2019

Show up

Every time the thought pops up that I should write more about my story, I push it aside. I do this often now, daily actually. Partly because I do not feel like this season of my life is going to speak life or its even worthy of sharing. But when something is redundant in my life, I take hint that actually God is the one nudging me. God doesn’t want me to worry about the responses I will get or the lack of motivation. He simply just asks me to show up, as I am, and speak/write.  Even if its hard, the truth is always best. 

As summer came to a close, I delve right into getting my clinical hours done to become a certified colon hydrotherapist. I trained under 2 clinics here in the Minneapolis/St. Paul area and found a good fit for a potential spot as a therapist after training. 

When I fist started training in the field of colon hydrotherapy, I was unsure how I would ever find a job as a colon hydrotherapist, being so young. But I had faith. When I moved to Boulder in 2016, I originally had planned on going to the colon hydrotherapy school out there. To my disappointment, the teacher didn’t think I would get a job in the field, if I wasn’t willing to set up my own business. So those words always clung in my conscience as I progressed through my training this summer. I would frequently worry about finding a position as a therapist, but eventually realized that indeed God would provide. 

After each session with a client, I felt a sense of purpose. I was joyful that God is giving me the strength to help people feel better and heal their bodies naturally. As you know, I am passionate about gut health, so physically helping people cleanse their guts of toxins, is right up my alley. I guess you can say I was made to do this. It was my goal to make people feel calm and comfortable. I was using my hands to carefully massage the stomach during a colonic session and prayed that God would guide my hands to help the gut relax and do its job. 

I remember the day as I drove to the clinic that something was off. I was slightly shaky and pushed through the few appointments I has scheduled. After the sessions as I was cleaning up the room, I noticed my calf muscles were weak and had “the weak knee” feeling. Then the familiar flash in the corner of my eye surfaced. Its the “seeing stars” experience that is all too common with a POTS disorder. Thats funny, I wondered why my body was suddenly showing POTS symptoms once again. I had worked  my way to this point in my life, the fear of watching these symptoms surfaced again really shook me to the core. Its been gradual progress over 2 years of physical therapy and medications to calm my autonomic neuropathy. 

My will is strong and my heart is big. So despite these symptoms which began to surface daily, I continued to make the hour drive each way to go train at the colonic clinic. I did my best to keep my nutrition and fluids up, but unfortunately that didn’t reverse the POTS symptoms. To be honest, I put physical therapy on hold because all my energy and time went into this colonic training. I was driven and love to put my-all into whats in front of me. I thought I was ok enough to not go consistently, but I guess my body was proving me wrong. 

In September, I had some persistent face pain near the parotid gland. I went to see my doctor several times and she was vigilant and we treated it accordingly, knowing I am prone to parotid infections. Even after an ER visit, and several follow up exams, it was unclear what was causing the paranoid pain and swelling. Weeks went by and deep down I had a gut feeling something was wrong. 

On Sept 30, I decided to try out a few brazil nuts, because I was tolerating ground pumpkin seeds and sunflower seed butter fairly well. After 10 min I felt like my blood pressure was dropping very quickly, I was starting to feel like things didn’t make much sense. Should I drink some water? Should I call for help.. nah, I’m probably just tired. As I walked past the mirror, I noticed how pale I had become and how big my lips were getting. The shock was setting in and I felt my throat muscles tightening. Oh my gosh, this is the real deal I thought, this is anaphylactic shock. I called for my mom, she quickly called 911 and then sat with me in the corner of the room as I was slowly suffocating. I was doing this rocking motion, trying to stay alert until the the paramedics came. I didn’t have an epi pen. Thank goodness the hospital is only 5 min away, because a few more min and I would have lost oxygen. They rushed in and my parents explained my simple story. I ate brazil nuts (I have eaten them before and this never happened) and now I am in anaphylactic shock. My bowels were on fire, and I was fighting to hold it in. I asked if I could PLEASE just use the toilet, but they insisted I didn’t have time and they continued to inject medication into my system to stop the reaction. 

As scary as this was,  I survived through it. God is good and He wants me to share even these moments with you. In the depths of pain and suffering, Gods hand is still close by. Actually God is even more near when these moments consume us.

God is our refuge and strength, an ever-present help in trouble” Psalm 46:1

As I was rushed to the hospital, I am thinking to myself how grateful I am for the past few days. The day before was a dream come true as I had hiked up the bluff with my young adult group and our priest said mass ontop of the bluff. Glorifying God in nature is a beautiful thing. But even now, God was showing up for me. My parents and sister stuck by me, the nurses and doctors worked diligently to get me back to stable. As I tiptoed near the ledge of death, feeling hopeless and scared, I knew God had more planned for me. That thought alone, was all I needed to get me through. 

I spent a day in the hospital suffering the most pain I have yet experience in my life (and I have a high pain threshold. For example: I get my teeth worked on without anesthetic and recently did un medicated endoscopy and colonoscopy). I felt significantly weaker and the pit in my stomach that “something is off” just grew bigger. The nurses and doctors had a feeling something was underlying that caused my immune system to react to a food I have eaten several times before. They advised I get to Mayo yet again to figure out if I had an infection in my face (due to my persistent facial pain). I ended up getting into my ENT at Mayo and she suggested a CT with contrast to see what is wrong. As we waited a few days over the weekend for the results, my body was starting to feel very achy and a bright red rash appeared on my face and was spreading down my neck. I drove myself to the ER and immediately the dr hooked me up with a dose of IV antibiotics because it was cellulitis spreading down my neck, which can be quite dangerous. I was given instructions to follow up with Mayo and continue with oral antibiotics. It was confirmed the next day that my CT didn’t show parotitis like we had thought, but cellulitis. CT scans can see the subcutaneous fat and the infection that was spread in my face, right over the paranoid gland. So the gland was not infected, it was more the skin/fat over it.

The ER dr. actually had remembered me from a visit back in 2013. I had gone to the ER with my mom because my body was swollen and red from reacting to basically everything under the sun. He was the first doctor to really invest and check all and everything he could possibly do. He really took interest in my case and believed something was underlying to cause these physical reactions. So 5 years later and after figuring out all that we have with going to Mayo, I could tell him what I had been diagnosed with and that in fact he was right, I had an underlying condition, autonomic neuropathy. I thanked him for believing me and encouraging me to find the root.

I continued treatment for this persistent infection during month of October and even into November. It took a strong antibiotic and a few rounds to fully stop the spreading rash. I started to notice how extremely tired I started to become and cut down on the days I was working. But I continued to do what I loved doing and helping people get the colons clean.

I was offered a spot, at the clinic I was training at, to work as one of their colon hydrotherapists. I was overjoyed and felt God was gifting me this opportunity I had prepared and worked so hard for. I always knew I wanted to specialize in some form of natural medicine growing up, and it just took little patience to find my place in the natural medicine world, as a colon hydrotherapist. I thank God every day for leading me down this path to get to this point.

My energy was dwindling fast and the eventually the lightheadedness was unavoidable. I began “seeing stars” even sitting down and had to come to the realization that driving was not going to be safe in this condition. My parents and sister helped me on on various days driving around and I am so very thankful for their support. But inside I was fighting a battle of letting go. I did not want to let go of this dream I had worked so hard for. I did not want to be sick and go backwards again. I did not know why this was happening and sadness was creeping in. I eventually had to tell my clients that I needed “a break to focus on my health”. That step took courage, but it was the right thing to do, because right now my body is weaker and needs to be tended to and strengthened.

I had more time to rest and also start searching for more answers. Several conventional doctors strongly advised a strict AIP diet, while focusing on nutrient dense food. My immune system was starving for nutrition and my latest lab tests showed some markers that prompted me to change. I went all in, preparing daily the bone broth soups, probiotic low histamine supplements, and rotating nutrient dense foods. It was very hard to transition my body because cooked meats tend to stick in my already slow digestion. I focused on healthy grass fed animal fats and coconut oil to keep me full. I increased my digestive supplement array and slowly I stated to accept that cooking like this, is the new way of life again. I now enjoy making up soup recipes!

Along with the POTS symptoms and random infection, my digestive system was really acting up. I was constantly bloated, constipated and basically in pain 24/7. I started going to a visceral manipulation specialist to help ease symptoms, but unfortunately it was not bringing relief. It just felt like my intestines were dead weight and things were not moving. I already know I have small intestine dysmotility, but intuitively I knew it was more than that. I tried all the natural remedies and felt like I was exhausting the list. I made a few trips to my family practice dr to get full blood panels done and things were mildly off. My liver enzymes were slightly elevated again, my red blood cell count was low, b12 low, and calcium was off. My bone scan revealed that I have osteopenia due to chronic amenorrhea. I still had 1 band left that is positive for lyme as well. It can get overwhelming with pinpointing “what’s wrong”, but I am thankful to have such a faith filled, detective minded doctor to help me sort through it. We made a plan to work on each imbalance and try to get my body back to balance again (this can be hard in general for someone with autonomic neuropathy). She suggested I find a gastroenterologist as well because I was having so much digestive distress.

As you can guess, I was reaching “medical burnout”. It’s a real thing, just ask any chronically sick person. It when your brain and emotions literally can’t take any more doctors visits, but the pain is so great that you have to keep going and searching. This is where family and friends play a huge role. My family started to step in more and encourage me and hold my hope up when I felt like I was falling deeper and deeper. I could not see a way out of this mess of autonomic, immune, gastrointestinal, etc. etc, problem-spiral. Now you can probably sense why I was reluctant to write this in the first place, because it just seems to be a compounding story of medical problems. Unfortunately I don’t have answers yet and am still searching. But I am fortunate to have faith in a God, who has all of this in the palm ofHhis hand. My life is not a jumbled mess of medical problems to Him. God sees through all my pain and reminds me daily of the hope that He is bringing.

A glimpse of hope happened over Thanksgiving break. I was bed bound for several days due to incredible stomach pain. A good friend who suffers with a digestive disorder herself asked some of her friends for a good gastroenterologist recommendation in the area. She gave me 3 options and I picked the closest one to home. I stepped into the office and candidly explained my symptoms. No sugar coating it, no smile on my face, and desperate for answers. The doctor was calm and collected and understood pretty well what autonomic neuropathy is and how intricately connected it is the digestive system. Let me tell you, that is not easy to find! He wanted to start from scratch with digestive testing and find a better solution than what Mayo could provide for my small intestine dysmotiliy. He too agreed something probably had progressed and was more focused on my colon. He suspected that my autonomic neuropathy could also be in flare up due to my increased POTS symptoms and digestive distress (digestive system is controlled by the autonomic nervous system). He suggested a new medication for motility and wanted me to get an endoscopy and colonoscopy ASAP, to physically see what it looks like inside. God has clearly led me to this doctor and I have a sense of trust and peace that only God provides. God will lead us in the right direction if we are open and let Him lead. It’s called surrender.

My colonoscopy confirmed that I have what’s called an “redundant colon” (shown in the picture) which is basically another loop that forms in the lower end of the colon. This makes the colon extra long and can cause problems. My gastroenterologist was surprised to find no peristalsis movement in the nerves and muscles inside my colon, as he probed around during the un-medicated colonoscopy. This helped confirm that my small intestine dysmotility is now spreading to affect my colon, leaving it with severe dysmotility. I am currently in the process of trying combinations of medications to support my immune system, hormones, nerves, and colon function. I pray it works, and it’s my job to follow this protocol with hope and diligence. I remind myself to be open minded each day.

So I guess I am telling my story because I don’t want to hide the valleys in my life. I want to be honest and maybe just by reading this you realize that you are not alone going through the tough stuff in life. I am right there with you. But we still must have hope and seek out what brings us life each day. Prayer and Gods Word breaths life into my day. My family brings me comfort in unconsolable pain. Focusing on Gods love and how He carries us hourly through these trenches will sustain us. God asks us to endure, sometimes past what we physically think is possible. But He asks of us to hold onto hope and never let go. He asks that we grow deeper in our faith and not run and get angry with what is going on. This may or not make sense to you, but in suffering we can actually find Gods peace. When chaos is swirling around, I find that Gods peace screams so loud and clear and all I need to do is hold on and have faith. God will show up. God is showing up.

My story doesn’t end there. It continues and is continuing every day. I felt God leading me to spend more time at home and focus on continuing my education as a Catholic doula (which is also my passion). Since I can’t actively help people in a clinic setting, I can prepare my mind until God calls me out to serve again. I also invested in several colon books that delve into the research and work of doctors who have particular interest in the colon and its role in the body. I am a true researcher and have great appreciation for all this knowledge that I can share someday.

I also find peace in routine. I love stopping by after errands, to say “hello” to Jesus at the adoration chapel. I remember that Jesus is the Divine Physician, so its important for me to carve out this time each week to pray and just be. Jesus loves us no matter how we come. All He asks, is that we just show up. He will provide the rest.

Little by little I try new things, and check-off-the-list the medical testing that my doctors order each month. Sometimes I feel at a stand-still or just frustration that my disease does not have an easy “cure”. It’s testing my patience as we figure out the right supplements and medications to keep my body functioning as much as it is able. But usually once I surrender and let go of the control that “I can’t fix it” or even “my doctor can’t fix it”, my peace emerges again. I am so very thankful God has given me a brain to retain and apply what I learn each day. I should never hide what God has given me and I believe that my life is a gift. It doesn’t matter if I suffer or thrive from day to day, its all worth sharing. It’s worth it because we are in this life together, lifting each other up and encouraging each other through each moment.

See you around!

 

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Comments

  1. Ashley says

    Thanks so much for sharing honestly and openly! It really is an encouragement to me as I also struggle with health issues that have no easy solution. I pray God would continue to give you the strength to keep going and lead you along His path for your life!

  2. Thank you for this, Caroline. God was right to nudge you. I’m here, in bed, about to go to sleep. I just read your post. I’m not well either right now. A setback. Morning time makes me nervous. That’s when my symptoms are the worst. I get scared, especially being home alone in the daytime. Anyway, know that your post touched my heart. I needed to be reminded that it’s just not all about me. I understand…..not getting completely well makes me sad sometimes too. <3

  3. I don’t know if it would help you, but I have recently done a 3 day water fast and it has helped me very much with health issues. There’s a lot of new research on how beneficial fasting is for all aspects of human health. Perhaps it may help you…

  4. Hannah Winebarger says

    <3

  5. Caroline,

    Have you ever tried a Vitamin A deficient diet as becoming popularized via Matt Stone, Garret Smith, and Grant Genereux? I know it might sound VERY strange but some people are having excellent results with their chronic health issues.

    A quick summary: https://iheal.me/breaking-the-stigma-how-to-rise-from-the-dead/

    I became interested in this when I kept noticing people heal from autoimmune diseases on an all beef carnivore diet. (A lot of variables there, but I currently like this “Vitamin A is a poison” theory.) Anyway just thought I’d pass along the latest from the weirdo-health-internet.

    Hope you are doing better.

  6. Whitney says

    I’ve followed your blog for years and I’m so glad to read an update from you, though I’m sad to hear that it’s been such a struggle. I’ve had chronic health issues for years too and I know how easy it is to get discouraged. I love how you share your faith and bring hope to others through your struggles. I will keep you in my prayers!

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