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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disclosure 3
10.09.2017

Faith is all I need 

My vision was to write another detailed day-by-day post (like day 1) on my Mayo Clinic journey (which I still may do), but at 5:00am of a terribly restless night, a thought came to me. Maybe I’m supposed to be honest and write from my heart…

something harder,

something truer,

something now.

Back up to Mayo:

My Mayo Clinic workup for my 4 week stay was done in May. They diagnosed me with small intestine dysmobility with a more in-depth test they invented. It is a gastric emptying scan that lasts 48 hours, instead of the standard 4 hours. At the 6-8 hour mark, when food reaches the small intestine, mine slows to 0.1%. So it basically stops and produces painful bloating and enough pressure that I easily vomit meals and liquids.

 

My digestion is like a slow ticking bomb. I put food in my mouth, chew cautiously, and wait. I know in a few hours, ill be miserable and typically contents on my food stop and sit in my stomach 12+ hours until it comes back up. This happens mostly with meats and fats, so it was suggested from my gastroenterologist that I stick with foods that will move-push itself through. High fiber and water filled (aka fruits and vegetables) are my best bets.

Thats what I eat most of the time, but my body can’t pack in enough and sustain off of that long term no matter how many combos, smoothies or ways I prepare it. There comes a point where the body just needs protein and fat that I desperately crave, so I give in, but pay for it dearly. It can even produce a quick spiral of vomiting for a day or two, but then keeping liquids down isn’t even possible. I feel like I made a mistake and only the ER with an IV can fix it.

 

Even with just eating fruit, I typically wake up nightly. Or during the day I just suffer in silence and cover it up with a smile. The panic I feel is unquenchable. I know enough about the digestive system that the gut affects the brain, but now I live it. When food sits and rots, it produces bacteria and byproducts that seem to make my body mad. So anxiety has become common and doing anything to calm my mind has become a task I still am working on.

Without my faith, prayer and Gods love, I would be totally lost. Sometimes sitting in an empty church is the only thing that can give me a glimmer of peace, and I’ll soak it in. Honestly I have always loved sitting in an empty church. The cold breeze , the hard pews, the soft sounds of the creaking roof. But I never imagined myself at age 23 suffering from an incurable disease, clutching my rosary and pacing the isles begging God for not only a cure, but hope for my future. I want to rest in Gods love, but its hard when pain becomes so deep. Its in times like this that Faith is all I need.

Just keep going: 

As weeks went by, I noticed I was loosing weight, but I easily ignored it because external appearances are not as important and looks don’t defines us. If we were looking at my life’s goals, and accomplishments that I was checking off my list…I was going strong. I got throughout Mayo Clinic, got several diagnosis’s, started physical therapy, renewed my license, gained alittle freedom, started my Catholic Doula course, was able to participate in Church weekly, spent endless laughing times with friends and family, etc. I was participating in life again and became truly happy and alive.

But deep down God knew, the person who “seemed all ok” to her community was slowly sinking away.  I truly was happy in the moment but hunger was digging away. Literally too, my weight was plummeting. All the way down to 98 pounds on the night I stumbled into the ER. That is when I knew I had pushed it and no longer could I push my body so far.

People, church, and friends make me happy, its food for my soul, it makes me heart sing. But when the body rejects food, things start to malfunction. I felt on a constant wheel of not eating much so I band-aided that hunger and pain and anxiety with activity I saw was healthy and good. It definitely is very good to be social and get involved- but not when I would spend that night over my toilet and in the ER at 1 am. My heart for life is so big, I just love people and experience and running in the rain. I love petting sheep and sewing tents out of old sheets. I live for carving pumpkins and the smell of an apple orchard. But its simple science, when the body is “fasting”  for so long, it gets drained, and has no more extra energy.

Reality check:

The reality was that my system got progressively worse over the past 6 months so I developed several infections (due to lack of nutrition and a weakened immune system), ended up in the ER dehydrated a few times, and have spent countless hours throwing up. I waited patiently and filled out forms and copied hundreds of records to send to my insurance. My family, friends and I prayed and hoped for me to start this treatment and be on the way to recovery.

The grand plan my neurologist at Mayo Clinic prescribed me was to receive IVIG in hopes of recovering my nerves in the small intestine (he thinks my autonomic neuropathy and small intestine dysmobility are directly connected to an immune system malfunction). We waited and waited and got denied by insurance 2x even after providing detailed records and proof of my doctors successful studies in treating patients. Here is his research.

My sinus surgery #2:

On top of my digestive drama, I had to eventually go through with my second sinus surgery because my body was not healing over the bone from my January sinus surgery. We were hoping the IVIG would also help heal the missing tissue my body would not produce, but since that treatment isn’t possible I decided to accept a second surgery.

Every scope into my sinus showed about 6 exposed bone areas about 1 cm each. To me they looked like little teeth inside my head. It was hypothesized that bone would get infected more easily, but honestly my surgeon did not know 100% since she has never seen this before.

I was living off of antibiotics to keep the bacteria at bay, but my ENT surgeon at Mayo clinic decided it was time to do this exploratory surgery and try to get the mucous in my sinus to heal. When she went in she opened up the upper portion of the sinus to allow drainage but also “roughed up” the edges around the exposed bone internally to promote my body to heal it.

I still have yet to see if it worked long term, but I do have some hope. I was the first patient she had heard of with this condition, but thankfully she was confident in what she was doing. The unusual part was that several bones were exposed, along with the face nerve on that bone. Its all just hanging out, without any tissue covering it (you would not know by looking at my face- but if you stuck a scope in my nose- you would see it). During the surgery she even “wiggled” the exposed nerve to see if it does anything since that part of my sinus and face is lacking feeling.

After that surgery, I felt all ok. I shocked myself and my family with not a single need for pain medication because I simply didn’t have pain. I’m thinking this may have something to do with my autonomic neuropathy, why I cant feel pain much, but it didn’t work in my favor long term. I felt totally normal and took no time to rest or recover the days after surgery. I tried to go back to “normal life”.

In the moment: 

I remember the day it changed a few days after surgery and I was terribly hungry and craving protein. I ate some meat and the vomiting would not stop for days, and then weeks. My body had not felt the pain of surgery but went into overdrive or should I say my small intestine felt like it stopped completely so the pressure and food only came up one way.

The ER seemed like a good place to go day after day. The IVs unfortunately are not a fix for nutrition and the “weakness feeling” in my bones had set in. God is teaching me that my condition is so real and this time actually painful. There is no faking it, no running from it, no covering it up. I wake up with sunken eyes and a rumbling stomach. My mind gets restless trying to fight hunger as I hang onto hope for a new treatment.

My gastrointestinal system: 

I have tried many gastrointestinal treatments and was working with various doctors. I tried Zofran, anti nausea meds and was on pro-kinetic drugs (Reglan) for over 3 months. It seems to work at first, but then not only did the benefit stop, but the side affects became serious. I felt jittery, restless and unable to sleep. The day my lip and eye started to twitch – I broke down crying because I knew I had to stop the medication that I so longed would get my intestine to move (even a little movement was enough for me). In the world of science- these medications only help the stomach, but there is a “possibility” of it helping the small intestine. It felt like my last shot. Reality sunk in and my hope of ever finding a treatment to fix my intestines was shattered.

A new plan: 

I wasn’t ready to start at square one again, but now thats where I am. Since the IVIG Mayo Clinic treatment is not possible and the medication options their gastroenterologist has provided have failed, I am getting the nudge its time to look elsewhere. It was suggested I send my records to a motility clinic such as Johns Hopkins or Indiana University or Cleveland.

Johns Hokpins is where my gastroenterologist at Mayo used to work, before she came to Mayo. She saw several patients with gastroparesis but honestly never someone with small intestine dysmobility. Unfortunately my condition is more rare and treatments are ineffective so its all trial and error and just keeping symptoms manageable. I found a few medical journals and we went over logical treatment options together. This was one of the medical journals published on small intestine dysmobility back in 1998. We tried what they suggested but now its time to think of another option, to step alittle farther and trust that God will lead me to a new brilliant motility specialist.

God’s plan:

It took alot of convincing and heartache, but I think I’m now realizing God has another plan. I was not meant to do IVIG as good as it seemed. I was not meant to stay on a pro-kinetic medication forever. I was not meant to stay at Mayo Clinic forever.

I typically run at a full pace once I’m given the resources and energy, but this time God isn’t providing any extra energy. He has put up His strong hand and is asking me to rest (I’m not sure I even know how to rest, but it’s definitely time for me to learn).

I had to stop the medication, basically stop the small meals I was able to stomach and just be ok with what I “can” keep down. My body doesn’t want to work right now and if I fight it, its only going to frustrate me more.

So in the depths of pain and in moments where hope seems fleeting, I ask for help. I ask people to pray with and over me. I have faith. I plead with God to give my surgeons and doctors wisdom and to please place the new doctor in my path who will have the courage and knowledge to try something new.

However, as it is written: “What no eye has seen, what no ear has heard, and what no human mind has conceived” — the things God has prepared for those who love him–

1 Corinthians 2:9

 

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09.11.2017

Essentials for Healthy Travel 

After 3 months of back and forth traveling to Mayo Clinic, I finally have an official list for my essentials for healthy travel. I’m definitely not a packing-pro, but this list has kept me healthy during my weeks of travel. (This was a road trip so some items you will have to swap out or change if you are flying)

So, what is healthy travel? I would describe it as a way to prepare, pack and successfully enjoy your trip without getting run down or sick due to the stressful nature of traveling. For those of us with a chronic illness, it may take a bit of extra preparation but feeling good on the trip will will be worth it.

My Tips

Tip #1: Be prepared and don’t stress. I always try to start writing out my essential healthy travel list 1-2 weeks before the trip,  so I can jot down things that I use each day when I think of it. This reduces stress of possibly forgetting.

Tip #2: Try to stick to your healthy routine that you have at home. Your body has a rhythm that keeps it healthy and happy so I always try to incorporate my routine into the days on my trip. This includes: good sleep, exercise, minimize chemicals, healthy eating, supplements when needed, and detox remedies.

Tip #3: Reduce exposure. Flying on an airplane can expose you to a lot since the air is recirculating and there is ionizing radiation exposure. So if possible, try a driving trip! If flying is the only option, bring nasal sprays, take those immune boosting supplements or even try a face mask.

Tip #4: Think outside the box instead of a hotel. I love using air bnb since typically the rooms don’t stench of chemicals that hotels use and the air quality is better. If staying at an air bnb, I always look for places with hard wood floors to keep air quality better.  I used to get severely sick from staying in hotels (mold, dust, chemicals), but since using air bnb I can travel again.

Tip #5: Take your vitamins, probiotics and immune boosting supplements. I typically bring along nasal sprays as well. I carry small baggies with my sorted out medications and supplements since trips are usually jam packed and you are in “on-the-go mode”.

Tip #5: Bring your own food or go grocery shopping once you get to your location. This can ensure that you are eating what is healthiest for your body. If you have a kitchen at the place you are staying, even better!

 

 

My Essentials

  • Chemical free bedroom: I always bring my own sheets washed in natural laundry detergent so I can get a rejuvenating nights rest. To help clean out the air quality in the room, I bring a mosmo detox bag. You can diffuse essential oils as well and simply open windows if its not on a busy road.

 

 

 

 

  • Medical safety: Don’t forget medications and to listen to your body when it gets fatigued or sick. With dysautonomia, I have to frequently take breaks and even find a place to lay down for a few minutes to get blood flow to my head and my heart rate at a comfortable level. I like to use a pulse oximeter to track my heart rate when I feel lightheaded. Setting alarms on my phone to take doses of medications and supplements is a necessity too because frequently on a trip I am not in my normal routine. Having these handwipes around to are great to use before eating and after out for the day if your immune system is weaker.

 

  • Use essential oils: These are the essential oils I travel with. Tummy Tamer for digestive system, purify for diffusing, peppermint for headaches and sinus congestion, oregano for keeping immune system strong

 

 

 

  • Keep the gut moving: Take extra magnesium (this can help with stress as well as keeping the gut flowing so you don get backed up). If you want bring along a travel enema bag (this is what I do) then you can do a simple saline enema or even a detoxing coffee enema (here is the blog post about it). Simple things like walking, deep breathing, drinking water and eating fruits and vegetables always keep me regular. It’s also good to carry a bottle of activated charcoal caps just incase of a bad food exposure.

 

  • Keep organized: Using the right pouches and containers to keep everything in order and accessible is a must for me. I get overwhelmed easily, so pouches with zippers like this RuMe zipper pouch is good for supplements. I organize my medications and supplements with these small plastic pill baggies.

 

 

 

 

 

 

 

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07.30.2017

Mayo Clinic Day 1

It’s finally time to go to Mayo!

Its week one of Mayo Clinic and I am going to share what I did along the way. I found it helpful to read a few blogs and talk with friends beforehand, so I know what to expect. But honestly I was exhausted from getting all my records together, packing for the week ahead and just wanted to get it over with.

I couldn’t have asked for more perfect timing to get this first cancellation appointment. My health was definitely not improving and for peace of mind, we all wanted answers and hope of a treatment. Please read “Time to prepare for Mayo Clinic” to catch up!

My buddy

My mom happily decided that she will be my buddy for my Mayo clinic adventure. There is no possible way I could have survived these weeks without her. She helped me organize, unpacked and situate the air-bnb room, drove me to my appointments and the grocery store, dedicated the time she spent in the waiting rooms praying or going to the various chapels and churches, gave the best post appointment/post procedure hugs, and was a patient sounding board and gave helpful feedback when I felt stuck in a situation.

My dad even drove down for a day and it was probably one of the hardest days I had, so he got to push me around in a wheelchair for that day. I guess (even in all the discomfort I was in) riding in a wheelchair was fun! My family is the absolute best and there is no way I can be doing this without them.

Sunday April 23:

On Sundays, I go to mass. Only in the case of illness is it ok to miss Mass in the Catholic church. Yes this is a “rule” I follow, but its so much more to me. I love my Catholic faith and honestly Mass days help me get through the week with peace and confidence that God is the one who ultimately controls everything.

On this particular Sunday, I was basically bed bound. I felt like my body was struggling to keep equilibrium which happens with autonomic neuropathy. Even just 2 hours of packing the day before, exhausted me to the point where I didn’t even have the strength to go to the kitchen to make breakfast or lunch. I had my bags in the hallway and my mom helped carry them to the car. We left at about 4:00 PM after saying our goodbyes to my brother and dad.

As we got closer to Rochester, I decided I wanted to see if we would still make it for the healing mass that was taking place at one of the Catholic churches in the area. It just so happens that there was a Croatian priest with the gift of healing who was offering blessings to those in need. We swiftly made it in to the church and got the healing blessing, I had so hoped for. This was the perfect start to the week. The blessing gave me something I had started to lack in, Hope.

After this we decided to stop by the local natural coop before they closed for the night. After not eating all day, I knew if I was going to make it up to the air bob, I needed something to eat. Eating is tricky for my body. It always seems like food does not move very fast past my stomach and leaves me either in pain or it simply just comes back up (sorry in advance for all the details, but this is a Mayo clinic post!). But I at least wanted to try and we picked up a few random things that sounded good to me like coconut ice-cream and salmon (I guess I was craving healthy fats!).

We got to the air bnb and it was a nice simple condo on the 5th floor. It was basically 1 block from Mayo clinic so we felt it was perfect for our week ahead. My mom helped change the sheets on the bed (this is something I talked about in my post “Essentials for Healthy Travel”). Its just a way to ensure we get a good night sleep without worrying about sleeping on sheets washed in chemical detergents.

Monday April 24:

I was quite nervous actually for day 1. I had my big folder of medical files that we carefully requested and printed along with all my scans (MRI’s, CT’s, x-rays, ultrasounds) that I had done over the last 10 years. I was way to nervous to eat a good breakfast so we decided to pack up our cooler and headed out the door. I had enough strength to walk to the clinic and the fresh air actually felt quite good!

When we got to the Mayo building, it felt surreal because of how hopeful this was to finally finding what is wrong. Of course we don’t know what God has in store for me, but something is just very right about this visit. I have gone through so much these past 10 years from being house bound, to being diagnosed with autonomic neuropathy, doing neurological therapy, getting well enough to move to Colorado and start my doula training. But there were still pieces to the puzzle that were missing (otherwise I would not be going to the Mayo clinic).

Ask we entered the building, I knew I was going to like it here. There was a statue of a nun with Dr. Mayo outside the courtyard. Mayo was actually started by Catholic nuns! My mom decided to go to morning mass and learn little about Mayo clinic while I went to my first appointment. I decided that doctors would take me more seriously if I went in alone. Throught the years, if I brought someone in with me such as an older siblings, or parent, then the doctor directed the conversation toward them. This is ok to some extent, but I felt like I wanted to be heard clearly since I was the patient.

 

We rode the elevator to floor 17  and went to the Gonda side of the building (Internal medicine department). As we waited in the lobby, I downloaded the Mayo clinic app on both of our phones so my mom could always see my appointment schedule and all my lab results and comprehensive doctors notes and records (they take amazing transcribed notes after each visit!). Everyone was just so nice here at the Mayo clinic, it was hard not to be happy.

As I was called into my appointment, my mom headed down the hallway subway to go to mass. Yes there is a subway tunnel that connects the Mayo building to the Catholic church. How cool is that?!

Internal Medicine appointment #1

The nurse took my vitals, gave me several welcome packets and took my CD scans to copy them into their system. Mayo Clinic prefers to look at all the patients medical records by hand (in their printed off format) at each appointment. I actually like this because I get to sit back and watch the doctors process and soak in all my medical info. Its just cool to see their brains working and thinking. Dr. Nina Schwenk walked in and greeted me with a kind smile. She sat down and first off asked how I was doing. I was very honest and explained I was tired, nervous and ready for answers. I handed her my big packet and she read through each page, asked questions along the way and took notes at the same time. This turned out to be an hour of discussing my medical history and then we went on to the physical evaluation. She noticed right away my lack of circulation (aka purple feet and hands). She was careful not to over stimulate me because of how I explained that going to from laying down to standing can make me dizzy. She checked all that an internal medicine doctor checks, took notes of my odd looking sinuses, purple discoloration, comments on seeing stars, lack of digestive sounds and a heart beat over 100 bpm.

After this exam she, had me wait little bit as she thought about what needs to be done over the next few week. Obviously she thought I should see a neurologist, as well as infectious disease doctor, endocrinologist, gastroenterologist, and the ENT doctor. She ordered a EMG, ECG, urine tests, blood tests, a new CT scan, and an autonomic test. She did say “this was just the beginning” and I will have more doctors and appointments be added along the way. Her last comment was that it sounds to her like POTS (Postural orthostatic tachycardia syndrome) but I definitely have other things going on and my case is complex. “Not to worry though” because I won’t leave until they figure this out. She reassured me this is not in my head and I certainly have for real conditions that need attention.

Mayo has an incredible system and basically the patients schedule can change from hour to hour depending on what the doctor can find. The way Mayo clinic works is usually having the patient start with Internal Medicine. Then from there, you will be sent to the specialists needed to appropriately test, diagnose and treat the patient.

Time to meet mom

I was probably in that appointment for over 2 hours and decided to text my mom that “I’m done!” She rushed upstairs to greet me (she was sitting in the chapel on the Subway floor). I got a great big hug squeeze from her and she eagerly asked how it went! My eyes bugged out and realized I had to reiterate everything, but I decided to fill in her because I was excited to share that I do indeed have a lot of things wrong. This may seem like bad news to some, but to me this was the best news ever. Finally I will get answers and this is the best place in the country for people with autonomic conditions because Mayo clinic specializes in dysautonomia and actually creates the testing and research needed for these conditions.

Of course all this medical stuff sparked the the inner scientist in her and she was able to share my excitement as I went through the medical evaluations and Dr. Swanks comments (my mom used to be a microbiologist). I had to sit down and speak slowly which means catching may breath in-between sentences. For people with autonomic neuropathy talking can sometimes be a challenge. My heart rate can jump from 8 bpm to 115 ppm by just saying a few sentences. Its due to my nervous system not being able to self regulate itself like a normal body. I’m still trying to figure out how to get all all I want to say without seeing starts or feeling like I’m having a heart attack by the end of a conversation. But m closest family members and friends know this about me and understand if I blank out mid-scentene (its because I actually am suffering from talking!).

After waiting for 5-10 min as the nurse assistant contacted the specialist departments and put my orders and labs in to the system, she called us over to the side desk. She went over my “new schedule” which consisted on mostly back to back appointment Monday-Friday and well as going into the next week.

I looked at my mom to see her reaction and she said that she met a guy in the elevator while I was in my appointment who came to Mayo expecting a 2 week long visit (this is a common period of time spent here), but had been there for 3 months. She said that after this conversation with this man, she had an inkling I was going to be coming back and spending at least a few months total her over the next year. We live close enough to drive to Mayo in a few hours, but to be realistic we decided to stay close by for a week at a time because appointments start early and end late.

Time to start the testing!

They fit me in for the ECG test Electrocardiography test in 30 min, so we headed down to the Subway level office where I was to get the test done. I was early but they took me as soon as I checked in. I was hooked up to some electrodes to measure my heart rhythm and rate. Yes my heart rate ran on the higher side, but at least my heart rhythm was healthy and good.

It was around 3:00 and we were both very hungry by this time! I was pretty nauseous from all the stimulation and we decided to look in the cafeteria to see if anything looked appetizing that I could keep down. The cafeteria was not your typical hospital cafeteria but more of a giant young with a tea/coffee shop and a lot of healthy options. I decided an orange sounded good and my mom got some soup and juice. I ended up being able to eat more once we got back to the air bnb condo, after I could rest and lay down. Laying down flat on my back for 15-60 min can do wonders for my body. This is a common scenario for people with autonomic neuropathy since their blood supply and pressure don’t regulate properly. I have learned tools in my lifetime to cope with symptoms like this so I am semi-functionable.

So that wraps up day 1! By this time, the report in the online Mayo clinic portal from Dr. Swank was all written out so we could both read it and review all her thoughts and notes from my appointment. We opened up the app which had outlined all my appointments, their times, the floor/building, and any directions and educational info I will need to know beforehand. It was so well organized that we did not have to juggle doctors or appointments, but instead focus on resting and getting through these days. Day 1 was hopeful and we both ended the day catching up the family and thanking God for leading me back to Minnesota so I can get the help I need to feel better.

 

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06.01.2017

Time to prepare for Mayo Clinic

Hi! Its time to let you all know what I have been up to since March. After a snow ball of events that took place in Colorado, I decided it was time to move back home to Minnesota. My new apartment was not working out and my immune system was suffering big time. It was time for support and a familiar environment (a.k.a home and family).

The sinus struggle

There was still the big question as to why my sinuses were not healing quickly from the January 24th surgery I got to open up my sinus cavity. My surgeon was beyond wonderful, but my symptoms post surgery had stumped her. She would not give up and continued to encourage me to get to the root of it.

It was a necessary surgery because basically my sinus structure was too narrow (post surgery was 1 mm) to allow anything to flow through. It was hollowed out to 1 cm and immediately I noticed less pressure, but the tissue was not healing which was alittle abnormal.

Presynope gets worse

Then when I moved from Boulder to Denver I started to experience more episodes of almost blacking out (presyncope)  and was “seeing stars” almost 24/7.  Since I have been through alot and had alot of strange symptoms in the past- I decided to brush it off and push through, hoping it would get better. It wasn’t until I couldn’t even stand through mass on Sunday without my knees buckling and my vision going grey that I knew I should reconsider my coping mechanism. I think I was afraid I was making it up in my head, so to cope I tried to pretend it wasn’t happening.

But as weeks went by, I got worse. The doctors took tests and treated infectious. Then they ruled out typical ailments that would cause this, but sent me home with no concrete answers or help for this constant state of feeling like I’m half consciousness.

Abnormal tests

The testing and scans that came back abnormal started to create a general picture of my health, which was not looking to good. My hormones were off, I was starting to become hyperthyroidism, my liver enzymes were elevated, my nerves were numb on one side of the body, I was constantly bloated and not digesting food or even getting it past my stomach, the sinuses were not healing, and my immune system markers were below normal (wow thats quite the list!). I was told to go to this doctor and that doctor, but the big question was “How do I get there if every time I stand, I almost black out?”.  “How do I continue working as a nanny like this?” “How do I even do basic errands in this state?” Almost everything seemed like a marathon to my body.

My heart rate was almost always over 100BPM and I felt like I was always shaking on the inside. Most of the time I could not comprehend a full conversation because I was just trying to concentrate on keeping myself vertical and breathing.

I had been referred to a gastroenterologist and he basically said we can first do an endoscope, but if that comes back normal, I need a liver biopsy. In his opinion a 23 year old should not show inflammation of the liver. But his last words were- I think its all connected and you need to get to the bottom of it.

An outsiders perspective

As the days went by, I could barley get myself to the doctors appointment without blacking out, but I pushed through again, because I didn’t know where else to turn. I was the one living in my body and it is hard to be a barometer of yourself. My roommate and I did not see each other often because of our schedules, so this made it even harder to have a constant outsiders opinion on my condition. I only talked to my mom and dad over the phone on a regular basis (though after I came home, they admitted they could see a decline in my health, and was happy with the decision I made). The last thing I wanted was to go backwards in health, it was my worst fear, so I tried to cover it up with all my might, until it was no longer possible.

Eventually my therapist (who is a wonderful Christian lady) looked me in the eye and said that this is a “for real condition”. She was not sure what it was, but after hearing that my family was in Minnesota, immediately suggested I try to get into Mayo Clinic. The Holy Spirit was speaking through her and it actually stuck with me.

God works in wonderful ways and takes hard situations and turns them around for the better. I finally decided to accept that my body is weak and yes indeed I am getting worse. I was emotionally and mentally strung out because I was constantly pushing my physical limits and I had no break. I knew the right decision was to sublease my apartment and move back home until I could recover and get the necessary testing and procedures to figure this out. Its times in life like this that family is not only helpful but necessary.

God knew what He was doing when he planned our family and I was welcomed back home with more hugs and love then ever before. I was showered with unconditional love and despite a hard journey ahead, given encouragement and support to find answers. Its easy for me to doubt myself, but when someone I love and trust looks me in the eye, I find it sinks in a little better.

We agreed I could use 2 weeks of serious rest. To be honest, it was very hard to allow my body to rest after constantly ignoring the signals of exhaustion. I was almost numb and still not sure what to do next in my life. “Would I go back to Colorado and continue where I left off or would I stay here?” Everyone was asking me this question and I was asking myself the same thing.

It’s God plan

It wasn’t until pieces started to fall in place that I realized God wants me here in Minnesota. Over the next 2 months I had spurts of energy in between doctors appointment to do things that gave my life purpose. I connected with new wonderful people in my church community, I am helping start a young adult group, I got my license again, and I stood up in my older sisters wedding (it was a dream wedding and yep I did catch her wedding bouquet!)

To the outside I may look normal. But on the inside I don’t feel or function normal. I wanted to understand and not have to live with so many unanswered questions. Even though I got my license, I quickly realized my neck was in a lot of pain and I got lightheaded quickly with turning my head. I would constantly need hour long naps after quick errands so I decided its best to save it for special occasions. But making goals for “normal” life, that is not medical related, is healthy and much needed to keep my spirits up. It’s a daily balancing act.

Starting the process for Mayo Clinic 

My primary doctor found I have lymes disease after doing a more extensive test. So I started on antibiotic treatment for that. It definitely made me more tired, but I have a lot of trust in this doctor, so I decided to stick with this treatment. Over the next few weeks I slowly started to transfer all the medical records from Colorado doctors to Minnesota. I also started the process of getting an appointment at Mayo clinic with Internal medicine and neurology. There were a lot of discussions between my mom and I, and it just seemed best to start the process sooner then later and be prepared to go in July (this was their soonest Internal Medicine appointment). I was not allowed to make an appointment with their neurology department because it goes by a case by case basis and its quite hard to get into. She has a few friends at church who go to Mayo Clinic and they gave her great advice about their system and how it works. They also passed on that there is such Hope and doctors at Mayo will not stop until they find an answer.

I filled out extensive applications, got doctors referrals, and transferred pages and packets of records for both departments. Then we waited.

Not accepted!

Mail came on Friday but I was not feeling too well, so it was after Mass on Easter Vigil that I spotted this envelope from Mayo Clinic. I opened it, but was shocked to find that they said it would not work out to be seen by their neurology department. The only way was to get an Internal Medicine appointment, which was scheduled for the end of July. I was confused and somewhat upset that on all days, Easter, God would allow such hard news. “How could I cope until then?”

My mom (being the wonderful mother she is and seeing clearly I needed to get in sooner) decided to make a phone call bright and early Monday morning April 17, asking if there is any possible way I could get in sooner. She explained I was only getting worse each week and my heart rate was constantly racing and the numbness had spread to my face.

Perfect timing

It was by Gods perfect timing, that the receptionist said they had a cancellation and I could get in on April 24. My eyes bugged out when she said she took the appointment for me and it was a week away. I was not sure if I was nervous or excited, but I knew one thing: this appointment was chosen in Gods timing and my job is to accept it with no question and of course thank my mom big time 😉

The week before my appointment I fought back countless fears like “what if they don’t find anything?” But its in times like this, that I put complete trust in God and His hand in my life. So I put one foot in front of the other and followed His lead.

to be continued “Mayo clinic day 1

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