11.21.2017

The Unmolded me

Pushing through perfectionism:

Slowly but surely I made a blink, then another and another.
“Why do I feel so strange?” I asked myself as I pulled my wobbly legs up to look at my refection. My lips pale, my hair disheveled, my fingers purple and cold.
“Its just another day”, I told myself as I started to brush my teeth. A few cold splashed of water and then unfolding some clothes from a bag carelessly packed.
Usually I’m pretty organized and good at folding or rolling my outfits on a trip so they dont look so wrinkled. But honestly, this time, I was too tired and simply done with “trying to be perfect”.

My cares I molded from a lifetime of “trying to be perfect” were being peeled away. Even my cares from last year, from last month, from even last week, were different. I was not the same and honestly I knew this wasn’t going to be an easy mountain to climb. Remembering the feeling of being winded as I hiked months ago in Colorado… didn’t even compare to this.

If I looked passed the zip-up hoodie and my favorite pair of black leggings, I would see a body that was cold to touch, too cold for the nurses to register my temperature the night before. I would see fingers and toes white and frozen which only got a diagnosis of Raynauds syndrome. I would see a few bruises on my elbow and knee from the day I was too clumsy and fell.

At this point my story was blurring together. Physically something was off, but an IV of saline can only do so much. I felt like I knew the answers and the stubbornness in me was resistant to going to the ER once again.

This morning I had an appointment, and I knew I had to push through.
I felt alone that I was carrying the weight of an incurable disease. Small intestine dysmobility and autonomic neuropathy were said more times than my actual name on this trip. It was becoming me and I was afraid of every inch of this disease. I was scared of my sickness becoming my identity.

Cleveland Clinic:

So backing up to where I was. I traveled with my wonderful mother to Indiana University medical center and then Cleveland Clinic. We did it to get more answers, to get a second opinion.

But little did I know that my body was almost too weak to travel. It was running on depletion from months and months of eating like a bird. I wanted to push past the fatigue like I had done so many years of my life, but my arm would not move and my leg would not budge. Was this called malnourishment? Probably, but also a dose of pain from the chronic migraine and imbalances from throwing up for the 4th time of the day.

*But* the pain that hurt the most, was the pit where hope had been plucked out.

I am the clay.

I was being unmolded infront of my eyes. My body was doing things that I never imagined would happen to ME! My brain felt numb and my heart was throbbing for hope.

I was like a clay pot, fired and painted in my favorite color. But I choose that color and the design and I wanted it perfect.

Jeremiah 29:11

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.

God knows the plans, and deep down I knew what He was asking of me. He wanted permission to remold me. I was scared of the unknown and not OK with that completely so I took the control. I dealt with a chip on my pretty perfect pot, and another and another. Until I finally realized that this cracked and chipped pot I once wanted to be “my life”… was not what God wanted.

He never asked me to be perfect. But He let me pick the color and be stubborn, because He was waiting for me to need Him more than anything else. I had to choose Him over being perfect. All God was asking of me, was to follow His will.

I had to be chipped away and scratched enough to the point of shattering to let Him remold me. It was the day I looked in the mirror that I saw the potential of shattering, just too close for comfort. I felt like my insides were withering away and I so badly needed a good meal to stay down. I so badly needed just something to grasp onto.

Needing repairs beyond our own control is scary. I had to trust my doctors, my family and most importantly God to help me. Seriously, physically I was too weak to even walk up the staircase without stumbling and passing out or running to the toilet to catch my last “meal”. Its the hard truth, but its one I need to share because only when we let ourselves be vulnerable and say OK to God, will he start to unmold us—for the better.

I had to want change and accept what it feels like to be vulnerable. I had to want being just a blob of clay for a while. I had to let my fear of the future out of sight.

Its when we are a blob that God is cradling us closely in his hands.

The naked clay is cold to touch, it feels lifeless and like a dead weight. But it has so much potential and hope to the eyes of its Potter.

Jeremiah 18

The Potter’s Vessel.
1 This word came to Jeremiah from the LORD:
2 Arise and go down to the potter’s house; there you will hear my word.
3 I went down to the potter’s house and there he was, working at the wheel.
4 Whenever the vessel of clay he was making turned out badly in his hand, he tried again, making another vessel of whatever sort he pleased.

My ambulance moment:

We are all a work in progress. I accepted what I needed to work on internally and tried once again. This time I wanted God’s grace and courage and strength to help me. I will never give up, no mater how many times I fall (maybe this is the Polish roots in me). But most importantly, I will always look to God and seek His unfailing mercy and love.

God is not harsh or mean to his daughters, so He let me fall again and again until I gave my yes–my Fiat. It was when I felt the weight of my own two hands go numb. It was when I felt the beat of my own heart thump alittle too slow. It was when my blink turned out too long and I missed the words the nurse said. It was then, that I knew I was the clay, and it would be ok.

I remember the moment. I had indeed pushed through that morning and gotten ready. I had gotten a phone call from my dad back in MN to encourage me to get up and let hope in. I told him, I was too weak and I needed his prayers if I was to ever get through this.

I needed a wheelchair for my appointment. I needed help out of the car that day. I even needed an arm to grab as I washed my hands in the restroom. But it was after that appointment that changed everything. I felt my heart beat a bit too slow, and my talking was getting jumbled. We asked for the quickest way to the ER so they could hopefully just tank me up on more IV fluids. I not only was dehydrated but severely needing nutrition.

Unfortunately the ER was in the next building and legally from the clinic to the ER at Cleveland clinic you need an ambulance. I was scared because I had never actually gotten to the point of needing an ambulance. But said “ok” because honestly my perfectionist cares were out the window. My hair was still disheveled and my fingers too numb to peel an orange.

The Paramedic helped me get situated and took a pulse. It was low- low enough that his eyes bugged out and he motioned to his buddy without saying a word. It was 45 bmp and usually my pulse runs high due to my dysautonomia/POTS. Then he tested blood sugar and again calmly explained it was very very low at a 49 mg/d. They suggested a simple sugar syringe but I asked if a piece of fruit could do and they agreed since we had it right there.

They carefully helped me onto the ambulance bed, lifted me high up and bucked me up so they to wheel me to the door. Only minutes go by and I am in the ambulance, hooked up to an IV, and being monitored closely so I stay “with it”. My pulse was still low and no temperate could be found (later on we found it was registering under 95 degrees F).

I do remember a funny second when I looked over at my mom and she smiled. She looked at the paramedics and back at me and her grin said it plain and clear. “They are cute!”. As funny as it sounds, they actually were pretty good looking guys my age and they were being the super hero of the moment, making sure I stayed alive. Talk about how God brings us humor in the toughest moments.

After driving a few minutes to the ER I was unloaded and asked over and over again my diagnosis’s and what’s wrong. Even in the midst of half consciousness I had to explain my story. “I had dehydration and told them I was passing out all morning. It was my second ER visit that week. Today I had passed out 5 times and thrown up everything from the night before and had not been able to keep any nutrition down today….phew! I was from Minnesota and traveleing to the Cleveland clinic to see a specialist gastroenterologist.”

I remember waiting in the hospital bed with my mom snuggled up by my feet. We didn’t speak barley a word but we both understood the depth of my pain. Being a mother, she not only knew my pain but she was carrying the cross of watching me go through it. She sat with me and watched day after day as my body got weaker and my food painfully came back up. She watched as my hands trembled and turn white. She heard my sobs from the bathroom floor on the toughest of days. But she was there, and her presence and love kept me calm.

I thought to myself, if nothing else, I will cling to the hope that God loves me. He loves me so much that he has placed these wonderful people and gifts in my life. I was teetering on keeping awake but I knew I needed to get trough this trip, back home and endure with hope that God will one day heal me.

But in the meantime It was ok to lie there. Be a blob of clay. Let Gods love hold me and mold me. But this time, ill let Him mold me exactly how He wants to.

Trying to solve my small intestine dysmobility:

This trip originally was planned as a road trip to see a gastroenterologist surgeon at Indiana University. Supposedly he was one of the best motility specialists in the midwest. Having a rare condition of small intestine dysmobility, my options are very limited. Since the treatment “plan A” from Mayo Clinic failed to get approved from insurance (IVIG therapy is used to help heal the immune system and gut nerves), I was left with “plan B” and “plan C” and “plan D”.

Over the course of months I tried a motility drug called “Reglan”. For 2 months I was feeling great and able to eat more fats and proteins as the nerves felt like they started to kick in. I don’t have the typical gastroparesis diagnosis (delayed stomach emptying). I got the Gastric Emptying Study done for the second time right before this trip and the results came back normal.

The medication, domperidone, which is used with slightly more success for small intestine dysmobility, is not available in the USA. So my gastroenterologist at Mayo clinic prescribed Reglan. After 2 months I started to feel impending doom and extreme unexplained anxiety (bad side affects of this medication). I knew I had to stop this medication, but was in tears because I felt like there wasn’t anything left to try for my disease.

The pelvic floor biofeedback therapy was a 2 week intensive long “camp” at Mayo Clinic and I just was too weak to do that. We later started to search in the Twin Cities, for pelvic floor specialists to start this biofeedback training for my colon muscles.

There is no medical treatment yet highly successful for small intestine dysmobility. Its all about managing the flow of what you put in and what comes out. That is why the medications and therapies used are directed at the stomach and colon. I was also taking the typical constipation medication, powders and enzymes to speed up the lower half of my digestive system.

I had tried and failed all the anti nausea medications and now the “motility” medication. The week I stopped it, I started to vomit a few times a day like the months before I was on it. I was scared of loosing more weight and feeling like a malnourished zombie again. But the side affects were just too much to handle and I even started to feel confused with my thinking. I was not going to take a risk especially with a medication like Reglan.

I felt stuck in my treatment plan and was declining in my health again since keeping food down was hard and my calories were too minimal to function. I started to show warning signs on my blood tests like anemia, low B12, low sodium, potassium, etc.

Getting second opinions:

This time we wanted to search outside of Mayo and get a second opinion. I found a few motility clinics and my mom helped me fax over records and referrals. We waited with hope and packed up the car for our first trip to IU to see their motility specialist. Though, when we got there, somehow we got scheduled with the wrong doctor. So he personally walked us down the hall to the “right” doctor who usually has a 6 month waiting list.

When we got into the right doctor, he asked me various questions that no other doctor had ever asked. He didn’t quite agree with Mayo Clinic testing (which of course makes me even more confused!) but definitely saw my case was complicated and I needed a good neurologist to work with me as well. That was part of the missing puzzle. Once my IVIG got denied at Mayo Clinic, my neurologist was not very helpful as a doctor and stopped giving suggestions or communicating. So not only was I looking for a gastroenterologist who understood small intestine dysmobility, but I was also looking for a neurologist who understands dysautonomia and autonomic neuropathy.

He mentioned my symptoms sounded like patients who have a Celiac ligament compression in their abdominal region (which I thankfully don’t), but it also could be nerve related. He did prescribe at-home IV fluids to avoid dehydration, which will be a great resource so I don’t have to go to the ER again when I get home. There wasn’t really anything conclusive but we scheduled his soonest follow up for an antro-duodenal manometry(An antro-duodenal manometry examination is used to evaluate the motor activity of the small bowel) in December. My mayo clinic gastroenterologist said we can do that procedure at Mayo clinic. Since it was quite the distance to see this doctor at Indiana University and I didn’t have a clear sense if its the right fit, the procedure may be done at Mayo in the future.

The “little” detour:

We made a stop to say hi to my beautiful sister who goes to school at IU (Indiana University) and I remember that day so clearly. She was beaming with joy and embraced her sick older sister, without caring about my pains or problems. She just loves to the absolute core and is such a fun and spunky pal. I remember my arm was kinda shaking and my legs felt limp, but she patiently waited when I just needed to sit and rest for a bit.

After seeing her, we got a text from a friend of my Uncle who works at Cleveland Clinic. I guess he had reached out to his friend saying I was hoping to get into see Dr. Cline and through the loopholes, I got in sooner than anyone expected. Instead of driving back home to Minnesota, we kept on driving to Cleveland clinic because my appointment was less than a week away.

My mom and I jumped around to air bnbs and it seemed like everyday just got harder and harder. I had already had a rough week and decided I needed to go to the ER because fluid and pressure had built up in my sinus again. The pathology that came back from my sinus surgery on Sept 26 at Mayo showed I had a bacterial and fungal infection. I had not received the medication rise for the fungal infections in the mail so I was going on several weeks without any treatment for the infections.

Everyone was so nice at the ER but I was feeling really sick and remembered sitting on the hospital bed just starting at the wall with exhaustion. My CT scan came back showing fluid buildup which indicates an infection so they prescribed a dose of antibiotics and sent me on my way.

The antibiotics didn’t do anything for the fungal infection or bacterial infection,so obviously I still felt pretty yucky and very drained. I found a nice chiropractic office with a physical therapist who specialized in the graston technique. Since I have a fractured odontoid vertebra, I’m unable to get my neck adjusted to relieve tension headaches, so breaking up scar tissue with the grasten technique is my go to therapy for headaches.

Outside of appointments and the ER, my days consisted of resting, sleeping and eating whatever I could keep down. I did manage to go to church one rainy day and actually received anointing of the sick yet again for the 3rd time time this year. It was a great blessing to receive it on this trip when I was struggling so badly with dehydration and malnourishment.

My gastroenterologist at Cleveland Clinic was a DO and a very kind doctor. He believed everything I said and was excited to have me as his “challenge”. He wants me to complete the smart pill test if insurance will cover it and agrees that any testing and treatment needs to be reviewed by a neurologist too, because my symptoms overlap. In his opinion I should be treated as a POTS patient because according to my tests I do have mild POTS. He questions if I have a genetic disease that causes hyper flexibility called EDS, so ill be getting the testing here in MN. His nurse was pretty concerned with the amount of weight I had lost and gave specific instructions to see a nutritionist and follow up with my primary doctor to consider a feeding tube if I continue to throw up each meal. So far its consistent that my body digests more simple sugars (like fruit), pureed nutbutters, and needs alot of fluid and rest to keep up energy.

My final thoughts:

We didn’t get in to see the neurologist that they wanted me to see during my stay in Ohio, but it got me motivated to find the right fit here at the Mayo clinic with a different neurologist. Its going to be just a matter of time and praying to get a neurologist who will treat my dysautonomia and POTS (update: The new dr. I’m scheduled with at Mayo in January 2018 is very familiar with POTS!). The automatic function affects digestion very closely so there is alot of hope that treating my autonomic neuropathy will help digestion. Its just a matter of how to treat it.

I think going to see other specialists was helpful because it opened up my perspective to other conditions and ways of interpreting my testing and results. I am slowly ruling out various disorders like Lupus and MALS and figuring out the root cause of my condition. It not going to be a simple fix and one day I jump out of bed ready to resume daily activitys and my doula training. My sister reminds me, that it has taken along time of battling autonomic neuropathy, so its going to take time to try things and recover.

A changed routine:

Ever since coming home it seems like rest is more important than ever. Unable to eat regular portions of food and meals that lack alot of protein, has put a mild toll on my body. I got lab testing that came up showing I am anemic, low b 12, a low BUN, lower sodium and potassium, and a low blood cell count (aka chronic infection). Its not life threatening but it can definitely cause my body to have a hard time fighting a simple ear infection, virus or cold. My blood pressure and pulse has been consistently low and I get constant dizzy spells that only go away with laying flat on my back. I had to realize driving isn’t safe when I’m this weak, so until I can build up strength, Im focusing on what I can do instead of what I can’t do. I’m learning to be patient with myself and pace my therapies and testing and doctor appointments so I don’t crash so hard afterwards.

I have to admit, I had a few good crys because I was embracing reality that my body is getting quite sick without the proper treatment. Its hard to force yourself beyond daily tasks when the consequence is something like blacking out. I love going to Tuesday daily mass at my church and praying the rosary with a group of young adults weekly. Sometimes its the little things like running errands by myself or having the routine of getting lost in my catholic doula coursework at the library, that I miss. I was on a good roll during the summer and on my feet taking short walks and babysitting, thanks to a medication that helped me keep food down for 2 months! But unfortunately the medication metoclopramide had bad side affects so I stopped it.

Life lessons.

Thinking back, I lived this summer at home to the fullest. One thing I learned over the past few months that has kept me happy no matter which way my health goes, is to live in the present without fear of the future.

Proverbs 31
25 She is clothed with strength and dignity, and she laughs without fear of the future. 26 When she speaks, her words are wise, and she gives instructions with kindness. 30 Charm is deceptive, and beauty does not last; but a woman who fears the LORD will be greatly praised.

Another lesson I’m learning to accept is, those of us who struggle and are not afraid to show it, (instead of hiding behind our ever so perfect mask), actually bring joy and purpose in life for others. We don’t know the effects we make on other people, unless they tell us. Often times I feel more of a burden because Im the “sicker one”, but on multiple occasions I have been told this isn’t the case. Having joy, gratitude, love for God and a heart that reaches out to others (even during some of the most painful and tough days) is a gift for others to watch. Each of us can choose how we react and act and God will use even our sufferings to spread his love and give hope to other people.

I tend to want to stay removed when I’m sick (and don’t want to show it) but I know the importance of community. My friends, family, and everyone at my church keeps me grounded and gives me purpose. We give when we can, and we have to accept help when we become the sick one. Stepping out and letting people into my life when I struggle is hard, but its necessary, and its when deep honesty and bonds develop. Only when we reach out and connect to people can our relationships grow and Gods love is abundantly shared in friendship.

Live in the moment:

Sometimes its not all about the end goal. Actually in my opinion, its more important to embrace the journey along the way and take it one step at a time. So speaking of “a cure” for my illness, it may look more like a windy road filled with bumps and stops and lots of therapy! Physical therapy, pelvic floor therapy, sensory therapy, counseling, prayer ministries, etc…

I have started pelvic floor therapy (which I’m actually pretty excited about) and am looking into other therapies (medical yoga, biofeedback, visceral manipulation) to strengthen functions in my body that the autonomic nervous system controls. Hopefully with a new neurologist, I’ll get even more insight and treatment exercises that I can use to regain muscle tone with having a POTS diagnosis (POTS can make it very hard to excercise or even stand for that matter).

For the small intestine dysmobility, it’s a process of trial and error with digestion supplements, stomach medications and bowel medications to manage symptoms and “keep things moving”. There is always a possibility of bacterial and fungal overgrown in the intestine with motility issues. I’m seeing good results with a SIBO antibiotic and mild antifunal medication to control the growth. Stomach massage and frequent colonics are important as well for my body. I used to be total anti-medication, but life has taught me that the body changes and trusting your gut and doctors is key to improving. So it may seem frustrating at times but thats when I remind myself to rest more, trust God is leading me on the right path, and lastly to find peace and purpose in everything I am going through. Thanks for following along!

Moments are precious. It’s as simple as that. So often I wish away the pain, the trials, the isolation. I tend to think “what if” or “how come?”. But that is not what God is asking of me. He calls us to be present in everything we do. If we have our heads elsewhere because our fears are too great, then we could possibly miss out on moments that matter. Moments that change us, are ones we embraced to the fullest-big or small, hard or easy. They all matter, because God created us to live and have hope in everything good. He wants to mold each us individually, so take a moment, and be present to God’s loving hand.

Esther 4:14 Perhaps this is the moment for which you were created

 

 

 

 

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Comments

  1. Carolyn Jordan says:

    Thank you for sharing your struggles and perspectives. I am facing something that feels scary and challenging to me and think perhaps God led me to your post to give me courage. It was quite funny when I got to the end and found that we are name sakes, as if God was saying this is about me! I am learning, as you said, that being willing to bare our struggles to others is crucial to supporting them. Everyone hurts, everyone has struggles but I have lived most of my life hiding mine and trying to look to others as if I had everything under control; I was basically used as a tool by the devil to deceive others into not being vulnerable and thinking it’s our power and might that keeps us going. It is not at all. God raises us and others up when we are willing to admit that we are weak, as you are doing. So you are a necessary part of the body to strengthen other parts of the body:

    *[[1Co 12:20]] KJV* But now are they many members, yet but one body.

    *[[1Co 12:21]] KJV* And the eye cannot say unto the hand, I have no need of thee: nor again the head to the feet, I have no need of you.

    *[[1Co 12:22]] KJV* Nay, much more those members of the body, which seem to be more feeble, are necessary:

    *[[1Co 12:23]] KJV* And those members of the body, which we think to be less honourable, upon these we bestow more abundant honour; and our uncomely parts have more abundant comeliness.

    *[[1Co 12:24]] KJV* For our comely parts have no need: but God hath tempered the body together, having given more abundant honour to that part which lacked:

    *[[1Co 12:25]] KJV* That there should be no schism in the body; but that the members should have the same care one for another.

    *[[1Co 12:26]] KJV* And whether one member suffer, all the members suffer with it; or one member be honoured, all the members rejoice with it.

    Thank you once again for setting a good example for me in writing this post and baring your pain to the world. May God bless and heal you according to His will and in His perfect time.

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