05.10.2018

A new song in my heart

It’s been a few months since my last post. I have honestly not had much motivation to write, but I think its time I see what I can come up with (because there is always something!) 

Lets go back to my hospital stay. That was hard, and even with the amount of support I had, the recovery after was unexpected. 

Have you ever wondered about the blind man that Jesus heals or the little girl he raises from the dead? What about the woman who reaches out to Jesus seeking healing with faith from the depths of her heart? 

He said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering.”

~Mark 5:35 

What happens in her life after she is healed initially? How do these people recover after their story goes on, past the pages we can read. What does their life look like between the lines written, as they heal mentally, physically, and emotionally? 

I wondered this myself as I woke up day after day feeling the bone tired feeling that penetrated my body from the strong antibiotics. I wondered who helped those people in the bible? How did they go back to living after they received some healing from Jesus’s helping hand? 

I needed considerable help from family members to drive me to follow up appointments, help me keep up with daily chores, and encourage me that things WILL change. I waited and waited for my energy to come back, but the sun would come up and the relief never came too. 

There were weeks I had motivation and tried my best to push through, but eventually my adrenals couldn’t take the stress and I ended up flat on my back for days. It was a never ending cycle, and I didn’t know how to get out. I had a feeling my autonomic nervous system had started to flare up after all the stress of infections. The POTS symptoms were worse than ever and I would go days with feeling lightheaded. 

Eventually I got in touch with my Mayo Clinic neurologist and diligently requested a new neurologist who was willing to treat my POTS and help me rehabilitate (instead of the current situation where my neurologist said there is nothing that can be done if my insurance has denied IVIG). That answer didn’t set well with me, so I had hope and persevered for more. 

It was a waiting game and not much progress in my strength was possible. I used to run triathlons but somehow I couldn’t get over almost passing out every time I walked around my neighborhood. So I waited and waited alittle longer. One day I got a call and I was scheduled to see the top POTS neurologist at Mayo clinic for March! Praise God. 

But it was only January and I had to seriously reach down deep inside and find the courage to simply wait. I took it as a signal to prepare like the saints did in times of weakness. I wanted God to truly direct my will to match His. I wanted my heart to truly transform and an space open for what God places next in my life. 

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.

~2 Corinthians 12:9 

The winter was a symbol of the state of my body. I felt frozen. Frozen in fear of the next infection. Frozen because I didn’t know what to do next to recover and rehabilitate. My laughter started to become quiet and my eyes became weary from pain that would not leave. I know antibiotics can wreck havoc for weeks and months after treatment and I knew this was partly the case. I had been on antibiotics on and off for various infections since September (5 months). 

I wanted to not only hope with my heart, but see a glimmer of hope with my own eyes. It would have been nice to have seen a steady increase after the hospital, but that was not the case. I didn’t get worse either, so the daily rest and recovery was keeping me stable. Too much activity or stress (even good kinds) would set my body backwards. On those days of overdoing it, my body temp would drop, my digestive system revolt and my thinking become clouded with a migraine. There were days I felt half alive. There were many days I felt like I was going nowhere. 

But you know what, I still had the choice placed in front of me daily to hope. I wasn’t going to let my innermost being be quenched by despair. I had feelings like “this will last forever” “I’ll never get back to my normal self”. At times like this, I ran to Jesus. I knew He could restore the fire in my heart and the strength in my soul. I spoke to friends and family and together we exchanged struggles and helped each other. I never kept it inside for feelings to fester, but instead let the light of God win me over, time and time again. Speaking light on anything we struggle with inside can immediately change our perspective and attitude. Opening up and sharing, lets God into our life, for the healing to begin. 

“I was full of fear and prone to wander,

Lost & lonely till the day you won me over,

I was halfway gone and going nowhere,

Half alive until the day you won me over,

You won me over.”

~Audrey Assad “Won Me Over” 

In February we lost our priest who had always been there as long as I remember. He was full of a contagious energy the endured both pain and joy to the fullest. He had died of cancer, but his spirit still was living and his presence in the church was a comfort to my soul. My soul because restless not knowing my “mission” in life. Though, this priest had mentioned to always offer up my pain and suffering for souls in purgatory. So this is what I did and accepted this as my “mission” in life. This gave me great joy to take on this mission to pray for souls. I had daily pain, and it never went to waste, but instead offered up. 

Around the same time, my niece was born early and as much as I wanted to visit her and my sister a.s.a.p., I had to wait until my strength came back to travel far. I was waiting patiently until the baptism day, so I could celebrate with her in the spring and be healthy enough for the baby’s special day. (This picture below is the day I got to meet my niece in April).

My birthday came and went without warning and I was soon 24 years old. I never knew that at this year in my life, I would be experiencing the hardships I currently was. Though many saints had their hardest years in their early 20’s so maybe these are special years where God really works on our souls. All I know is that each day, I continually wanted my heart and soul open and waiting for what God has planned. I was grateful for everything in the present and I took the time of recovery serious. I let the rest sink deep in my bones. I was finally learning to accept help (which is hard for someone with a strong will). But most importantly, I was praying God would place a new song in my heart. I trusted He would. 

I am very grateful because God  has blessed me abundantly with blessings. I’m going to be honest though, my life was not what I thought it would be at age 24. I tried to just be happy and ok with everything. But that would not be honest, because I did struggle at times. I felt my knees burning like an 80 year old and my head and heart throbbing for relief. I prayed to God without a breath in between some nights, begging He would hear my prayers.

“And you lost your fire

And your flame’s gone out

And your down on your knees

Cause your life is not what you thought it would be

No, 

Lift up your head

Help is on the way

And it won’t pass you by

You just gotta reach out your hand

Lift up your eyes

Love is on the way

And it won’t pass you by”

~Audrey Assad “Breaking You”

I knew Gods love was enough for me. I really did, but I wanted to believe it and have it become part of who I was, rain or shine. I didn’t want life to pass me by, and I wanted to see beauty again. With support, encouragement and continued perseverance, I finally was able to lift my eyes and understand the great adventure God has laid out for me. God never promised this life to be easy, but its our choice to trust Him with all our heart. Its our choice to find the blessings and beauty. 

“With man this is impossible, but with God all things are possible.”

~Matthew 19:26 

I took time to regroup with myself and decided to focus on the mold God carved out for my life. I was not going to fit anyone else’s mold, so it was time to get to know my own. Comparing ourselves is a destructive thing, when it leads is to doubting ourselves. I didn’t want to doubt that Gods creation of me was a mistake. That was far from the truth and I set out to fill the mold only God intended for me. 

“Be who God meant you to be and you will set the world on fire.”

~Catherine of Siena

I could feel in my heart, God molding and changing me. He wanted me to feel the peace and freedom in life I so longed for. I trusted Gods promise that He would surely place a new song in my heart. I didnt know when, but my faith was strong and I was willing to wait.

I actively waited and focused my energy on things that needed work in my life. Some were internal realizations and others included mending relationships and friendship that were lost. Digging up things that we stuff down because of past hurt isn’t fun, but it’s important to do it in Gods time. It’s important so we can move forward and forgive sincerely. I sought counsel from  priests, doctors, friends, family and slowly the old pieces surfaced, and could be dealt with. For the first time, my confidence in life was blooming and I was ready to take the next step. I was open to be filled with the new things God would give. 

There was no more running. No more building of walls around my life and heart. Even with weaker health, I was the happiest I have been and peace was taking root from a place that only God can plant. But I continuance asked God, now what’s next for me? Was it discerning if I should be a consecrated nun (I never fully explored this route and I wanted to know fully if this was Gods path). I read about my favorite saints and juggled around ideas “if I were to be a nun… what order would I be?” Deep down I was having a hard time fully grasping this vocation for myself because I truly admire family life and children. That has always been my dream for life. I believe God gives us dreams for a reason too. 

So I ultimately decided it would be a better step to start with 3rd order Carmelites, if God was willing. I did some reading and research and connected to a few people in my life about the process. At the same time (with the help and persistent encouragement from one of my best friends, Mariah, joined back on a catholic dating site (Catholic Match). 

Lent was beginning and I felt God asking me to try something new and get my feet wet in either a consecrated life or dating. So I prayed God would lead me down the right path to pursue. I had equal information and steps taken on each side. I had appointments set with a spiritual director in a few weeks and started a novena the day before I joined the Catholic Match site. 

I woke up on Feb 19 and was inspired that St. Joseph was the saint to pray to, specifically for the men in my life and courage for each of them (father, brother, brother in law, grandparents, priests, and any future man). I started praying this novena and gave God my full faith that He will direct my path in life (whatever that may be). I prayed for a new song to begin in my life. I prayed for Gods will.

“Waiting in the night for you. Burning in the sky for you,

There’s an aching in my body,

This web of bones around my heart is coming undone. 

I need a new, I need a new

I sing a new song

All I have is what I need and this I know.”

~Audrey Assad “New Song”

After talking with my friend and sister, I decided to only get to know people on Catholic match in my area. Though I ended up clicking around and was led to a guy with the Divine Mercy image for his background picture. I love Divine Mercy and St. Faustina has always been my role model. I even started reading her diary a month ago. It was because of St. Faustina that I was beginning to consider the life of a nun, she made it so incredibly beautiful. I found her image of Divine Mercy a sign from heaven that someone can love Jesus and their faith just as much if they are a nun or in a relationship. My heart sank alittle when I noticed more clearly that he was in illinois. I decided to still message this guy because I really did love the Divine Mercy picture and wanted to let him know. Of course I wanted to have the chance of getting to know this guy too, but if nothing more, now he knows I liked Divine Mercy too. 

I knew that I wanted a relationship, in which each person would take their role seriously. That is, ultimately leading each other to heaven. I love God and my first priority was that any guy I end up dating, needs to love God first and foremost. I want him to know God and have a connection and faith that is unbreakable. 

You probably know where this story is going, but I‘ll share alittle more on the inside. Deep inside I was struggling because I felt my illness had taken so much of the confidence I once had. I didn’t know if it was even possible to go on a “normal date” (aka dinner, movie, long walks, etc.) without having to eventually admit I had a illness that limits my abilities. My mind swarmed with “what if’s” and I wasn’t sure how ready I felt to share a part of me, I still don’t fully understand. 

Dating someone is a vulnerable task, and can be a nerve wracking thing for people, even if they are healthy of sick. Everyone should get a fair chance and not be afraid what the other person will think. God has created each of us with a beauty that the world needs. Each of us is a blessing to the people around us. God will also not give us more than we can handle and He will bless us beyond measure. 

More than likely, the person on the other side has pieces of their life that are hard to share too. But its the joy you find in eachother and the bond of sharing experiences, that make the little sacrifices worth it. So I knew if I found the right someone, he would surely understand I cannot do everything. I prayed for someone patient and willing to pray with me during the hard times. 

I decided I wasn’t going to miss out on life and a dream I had planted in my heart because I was afraid of fumbling. I was honestly afraid of letting someone cross to my side and see the world through my lense. Would they like what they see? Would it be too hard? Would it be fun? These questions I could not answer myself, but simply had to reach out my hand and live life. 

I was finally willing to let my fear turn into wonder. And this exactly what happened. 

I knew I had joy to share with anyone I met. God gives us each certain gifts that He expects us to share. I wanted that someone to experience how beautiful life is, no matter how deep the valleys seem. There is always someone willing to pull us out and always a God to look to as our Father. I knew God wanted the joy I have for life, to make an appearance, and not turn back. I was going to be ok with what the futures holds, because my hope and faith are in God. And He is a good, kind, loving God. 

On a certain day, I remembered this guy with the Divine Mercy image, pointed out “I’m different “ and that got me thinking. I came to the conclusion that if I never had these health challenges over the many years, I wouldn’t even be close to the person I am today, not even close. It was time to let myself be ok with who I am (sick or healthy) and let the new song inside start to sing, detached of fear. 

Its hard to accept the reality of an illness and at the same time, not let it take control of everything, but instead look at it as an opportunity for growth. Ultimately giving God the credit for all the changes and praying to stay strong and true to yourself through it all, is what’s going to keep the life inside flowing. An illness is humbling and I didn’t want my insecurities and pride to get in the way of Gods plan. 

As I shared my story with this guy and the things I have went through, it actually helped me process and accept these hard things. Amazingly I was seeing life in a whole new way. I could finally pray for someone, be honest and in turn help them become their fullest self too. Giving and receiving is such a gift. I pray each night for us to be transparent so the light can shine through to both sides. Everyone deals with insecurities and battles within. It’s accepting a person for everything God created within them, that helps them shine. Never underestimate the simplicity of acceptance. 

Its easy to write more, but I need to live in the present and experience what God has placed into my life. One thing I will add, is that prayer together, keeps God always in the middle. Its easy to get caught up in distractions and worries, but ultimately, focusing on what God is healing and how He is guiding our hearts. I want this song of life inside to keep on singing. I know from experience, that when God places something in our life, to never just pass it by. Stoping, listening and showing some love can enkindle the song of life in someone else’s heart too. The only way to know, is just try and live life with an open heart. 

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disclosure 3
01.05.2018

Blessed is she who has believed

Blessed.

It has been on my heart to write. To get out the jumbled words, the fierce memory of pain, the rawness of life. This sort of pain only comes with a tear half fallen. The kind that wants to hold back, but can’t, because life needs to go on.

Only hope can swaddle this pain and make it precious again. Only love can breath belief into her shattered heart. Her dreams will never fall if she reaches out and believes in this Love.

“Blessed is she who has believed that the Lord would fulfill his promises to her!” Luke 1:45

This verse struck me still as I glanced intently at my favorite priest, all snuggled in his big green nursing home chair.

An “old soul” is a lovely thing. I cherish the moments I spend with those who simply understand the wonders, depths, valleys of tears and joys of life. Its a connection where age doesn’t seem to matter. For myself, sometimes it takes great effort to understand others deep logical thoughts. But I know that just being and staying present in the moment can be just as important.
I recently visited my old priest, who has finally transitioned to a lovely nursing home. Coincidently our stories had a few similarities God wanted to point out to me.

The pretty baby pink wallpaper, the crucifixes on the wall, and the countless prayer cards pasted in the halls, were the first simple reminders of the familiar memories at St. Marys hospital in Mayo Clinic (Where I had spent the past 2 weeks) . Then there was that routine syringe injection which I didn’t mind watching, but again a flashback to the past two weeks. As I propped up his pillows, I was in reversed mode, because a week ago I was the one being propped up. We discussed pills, sleep, and daily raw frustrations. In-between silences, I listened to the softness of his breathing. I found myself slowly accepting my struggles instead of letting them strangle me like they had in the past. I saw he was content and human and not running or hiding from his illness.

Embrace now and heal

Internally I try to brush off tough stuff, saying to myself “it’s just part of life…right?” Yes of course life will be tough at times, but that also means we need to allow ourselves space to heal after. More importantly though, we need to live in the present and accept these crosse. Then “moving on in life” comes at a pace we don’t always expect. Our body needs to heal and our hearts and memories need to heal. Pain can do funny things to the brain. I feel like it can imprint deeper and harder into our memory.
I wanted to be free of fear- though I didn’t know how. I was being torn between trying to mourn the sick valley I plummeted into these past 3 months and mustering up sheer willpower to continue on. I was slipping on ice and felt like anywhere I tried to grip, I fell, I failed, I let others and myself down. What was God teaching me? God is teaching me patience and faith that the good is coming. Just like the verse “…the Lord would fulfill His promises for her”.

A timer is set 3x a day (aka beep until it drives me more crazy than the thought of taking the meds) to remind me to take the wicked nausea provoking antibiotics the hospital sent me home with. Its embarrassing to tell people I need to stay close to home.. because yep…I need a close running ground to the nearest evacuating site. I feel at times lonely and ill and unable to sometimes even muster up a morsel to say a peep to my brother in the other room. Words just escape me and my gland swells with fluid making the words feel like 1000 pins and needles stabbing my face. I never knew how words could be so special- the sound of voice and expressing of thoughts whenever and wherever is a gift. Seriously- don’t for a second take your words and ability to talk for granted.

Many times when sickness ails the whole body, talking becomes less and the person becomes more withdrawn. Company becomes more important than conversation. I have learned to simply enjoy people’s company- without words, without the muffles of lifes-going-on’s. Things became more simple. This is a gift because after all the words are stripped away, what is left is true raw love. It takes love to sit and be with a person you care about, but they cant lift their lips to say it in return. Love will accept this, say “ok these shortcomings wont define you”, and look deeply into their eyes and heart and reach them there . Its a silent Love. Its sort of like the saying ..” you know you are comfortable around someone if you don’t have to talk, but can just be”. Its all because acceptance and love has grown and words are not a necessity anymore.

The unseen pain:

I was a gradual process, but after my 2nd sinus surgery at the end of September at Mayo Clinic, I started to decline. First it was fatigue, then excessive nausea, then increased head pain/pressure. I was unable to keep up my routine and even reading got tough. Fevers every other day became the normal and it took effort to get up to eat/shower/etc. I struggled big time accepting that I needed help with tasks I loved to do just previous months before. I constantly asked myself- what is going on?
We guessed it was due to lacking treatment for my small intestine dysmobility. Or possibly my POTS symptoms were causing extra stress on my body. Or was it that I was exhausted after my Cleaveland trip?

But as weeks went by, my neck got very stiff and my jaw was in alot of pain. I got a mouthguard made because I was clenching my teeth so fiercely. Still God had me wait for answers, I continued to do my best with what was in front of me. But I was getting frustrated because I knew something was up! Eventually my family practice doctor and surgeon concluded it was due to a sinus infection and chronic fungal infection from my surgery. My eye started to become chronically swollen and a red peeling rash spread across my face. So another round of antibiotics was the treatment. My physical therapist was noticing a decrease in my neck mobility and I too was getting so uncomfortable that driving became too hard to do. She agreed it seemed like an infection and made a comment that stuck with me “maybe you just need a power dose of something to reach the infection..has anyone ever considered iv antibiotics?”

I was not up for seeing my ENT surgeon at Mayo Clinic (its a 2 hour drive), so I was referred to a local ENT dr. She was very smart and thoroughly scoped through my sinuses. It was not clear that I had an infection but my consistent fevers, rash and swelling were red flags. She was worried about the possibility of meningitis because I had neck stiffness and a chronic headache. She actually suggested that I go to the ER because my symptoms looked pretty bad and she didn’t want to play around. Again another comment that struck me was “you know.. Mayo Clinic has an ER and its attached to their hospital (who has all your records), this would be the best place to go.”
I wanted to pull my hair out because I was thoroughly exhausted and had just canceled my appointment with my ENT surgeon there. Though its not the first time someone has mentioned that if I ever needed an ER, Mayo Clinic was the place to go. Logically it never made sense to me because it was a 2 hour drive…but something struck a cord inside and a voice was whispering “go, it will be ok this time, trust the people around you.”

As I walked out if that appointment ready to pull my hair out, I decided now was the time to have courage and listen. I walked into the waiting room where my mom was actually sleeping and remembered all the times doctors told me to “just try out the Mayo clinic ER”. I was afraid they would send me away because a sinus infection isn’t life threatening. But something felt much worse and my bones were begging for relief. So after contemplating my thoughts for a good 5 min next to my sleeping mom, I woke her up. She quickly asked “how did it go?” and I calmly said “I think it’s finally time to try out the Mayo Clinic ER”.

God prepares us in amazing ways. The sheer instinct to let my mom nap, the openness of my heart to accept a hard task, and the gentle words placed in the mouths of wise medical professionals was all His doing. My moms response was like a hug that became words. She knew my fear of possibly being sent home even if we go to Mayo ER, but I think her instinct from God was the same. “Go and go now”. She offered to take us home to pack a bag incase, but I said “If I go home, I may change my mind, so its best we go now”. And off we went driving to the Mayo Clinic ER.

When we got to the waiting room, we needed something to eat and drink, so my mom dropped me of to wait. The waiting room was packed full and I waited for 4 long hours. I befriended a family there and shared a few hospital blankets and benches to use for resting. I was dosing off in sleep and exhaustion most of the time on the bench that was just a foot too small. My mom was again listening to Gods instinct grocery shopping for various foods and even went to walgreens to pick up overnight necessities and a discount clothing store for pjs.

The ER #1

Finally I was called back and placed in a pediatric ER room. The ER is connected to the bottom of the St. Marys hospital (this is the hospital Mayo clinic uses when their patients need procedures). They did various scans and tests and called in a specialist ENT doctor. Everyone was so incredibly kind there and we both had tremendous peace and confidence we were in the right place. We waited eagerly and intently through the wee hours of the morning.

I glanced through my watery eyes at my mom sleeping in the chair next to bed. She was beautiful sleeping there, such courage and patience. It was a dreadful wait thinking we would need to drive home at 4am in the morning with no sleep if they discharged me from the ER. The thought of it made me silently cry. It wasn’t until a nurse walks in with 2 syringes of fluid and a full iv bag. She looked me in the eye and apologized for the wait but the radiologist and ENT medical team were carefully examining my case and CT scan that was taken hours ago. She explained they saw what looked like a parotid infection (its the biggest saliva gland located in the cheek). It was swollen and inflamed and they decided its best I start on iv antibiotics. Actually my sinuses were healing quite well and its no wonder doctors have been confused with my symptoms. A wave of relief washed over me and it felt like God had finally answered my plee for help and relief from pain in my head from these past 3 months. So she started the 2 iv injections of antibiotics and they bundled me up (my temperature was teetering on 94 degrees) to wheel me upstairs to the hospital rooms.

The hospital stay #1

We got a private hospital room so my mom could stay on a cot overnight in the room
as well. It was so comforting to know she would be there understanding the process as I have never been admitted into a hospital overnight before. It was about 5:00am and we honestly just wanted to sleep at least an hour, so thats exactly what we did until we were awoken from the nurse to get my vitals. My mom decided it was best to get a few things from the car for herself and I, and while she was away, the first medical doctor came in to take a overall exam.

 

I was assigned a whole medical “team 1”, which is common at Mayo clinic (when minds work together-awesome things happen!) They continued to poke and take vitals and ask every question under the sun. Every day 3 nurses rotated shifts so there were a lot of personalities to interact with. Though everyone was incredibly nice. I never slept more than 1 hour at a time that Tuesday, but continued to follow the hospital schedule. I knew it was hard, but in the end this would lead to recovering from the deep parotid infection. Tuesday afternoon rolled by and my mom showers me with gifts that the local church gave me. A St. Therese rosary, 2 books, prayer cards, lots of prayers, and a mass offered in my intention from our dear priest.

Throughout the day I texted my family a few updates but was so exhausted, I was counting down the hours until I could sleep and be left alone. We slept Tuesday night and on Wednesday I finally realized that the antibiotics were working. The pressure was decreasing and even though I still was in pain, I started to have hope that indeed this was getting to the root. Wed afternoon my medical team again came in to talk about my treatment and discharging me from the hospital. I thought inside it seemed a little soon since I just started to feel inklings of feeling better, but they seemed assured the oral antibiotics they would send me home with would cover it. And so by 4:00 on Wed we got to go home!

Going home?

I was feeling more alive than I had in months so it wasn’t even an option to skip the John Paul 2 relics at my home church that evening. With the same clothes on our back from Monday, we walked in that church and prayed with the nuns as we touched the blood that once belonged to Saint John Paul 2. What a wonderful life long dream this was. He is my favorite saint and I felt as I touched his relic that God whispered into my soul “all is well”.

A few days into the oral antibiotic, I started to feel that bone tired fatigue, but chaulked it up to catching up on sleep. It wasn’t until Sunday evening that my temperature went to 99.5 degrees (thats high for me) and my face started to swell up red again. I knew something was wrong and cried as I slowly got dressed and tiptoed downstairs to ask my family to drive me to the local ER. I was devastated but I knew the oral antibiotic they sent me home with was not working (it was completely different from the 2 that they used in my ivs at the hospital). Typically a parotid infection can be caused by step or staph and its generally not necessarily to take a biopsy, so doctors treat one or the other.

Again, not thinking I would be more than a few hours at the ER to change the antibiotic, I slipped on my pjs and headed for the door, eagar to get the correct medication and relief. Though I suddenly walked backwards, grabbed my vitamins, an extra shirt, toothbrush and a few random overnight necessities. This was probably my guardian angel tapping me on the shoulder saying “this may not turn out like you are expecting”.

The ER take #2

And so once again I walk into our local ER and explained I was just in the hospital and probably needed someone to reassess my symptoms and possibly medication. The doctor agreed that the infection looked like it was not being treated properly and suggested we take another CT to compare to the one done a week ago. It was going to be the best diagnostic tool to see the infection. I did decline the IV injection which is typically used to highlight the infection, because I have neurological side affects from IV contrast. Sometimes you have to speak up, even if a nurse is giving you a hard time *lesson learned *. My brother and dad and mom sat in a row of folding chairs next to my ER bed. They made me smile and pass-by the time. My brother had brought 1 thing. His bible. Gosh, I love him to pieces, and he knows how to trust God with all his heart! We told each other our favorite bible stories and it was probably the best family bonding time we have had in a long time.

After awhile my brother and dad left to sleep, and once again it was my mom and I dosing off into the late hours of the night. At around 12:00 the doctor walks in very concerned. She explains my neck is fractured. I told her, yes I knew this and Mayo clinic did a full workup and determined its old from falling out of a tree at 2 years old and it’s stable. But she insisted the scan their radiologist read had a new fracture possibly life threatening and wanted to know if I had a hard fall in the past week. “No I had not!” I was a little surprised but didn’t panic and asked about the gland “does that look any different from last week? Is it still infected?” She said it looks about the same (swollen/infection) but decided that since my neck was “in-stable” and my infection had not resolved, I needed to go back to Mayo clinic. This time I was placed in a neck brace because they were not going to take any chances and they put an emergency code on the ambulance to get me down to Mayo asap! What usually takes 2 hours to get there, took 50 min by ambulance. Yes I did get to ride in an ambulance with sirens on and everything (secretly I always wanted a speeding ambulance ride and felt like Madeline).

 

I rode in the ambulance by myself and arrived straight into the St. Marys ER. They were quick to help me and the neurosurgeon soon walked in. He said that my scan looked the same and the radiologist was just being safe. Though actually the fracture is indeed old and I can take off the brace! Whew, glad that was cleared up fast. But that chaos sure got me down to Mayo and the care I needed asap to finally resolve the infection once again. Again I felt in such good care at Mayo and they had access to all my records and everyone thoroughly knew my case since I had so much documentation.

A young doctor walked in and determined that the infection was possibly a staph strain due to the nature of a parotid infection and how my skin looked. My mom finally met us in the room and the doctor explained that I would again need to be admitted into the hospital for more IV antibiotics and this time to treat it more thoroughly.

The hospital stay #2

So again I was bundled up and wheeled to a hospital room on the second floor- Francis floor 2 (named after st. Francis). We passed by various Catholic paintings and crosses as I was wheeled through the hallway at 4:00am in the morning. The Catholic influence in this hospital is amazing and so comforting. My room had a nice window view of downtown Rochester and of course a cross hanging on the simple pastel colored wall. This time we didn’t get a private room so my mom pulled up a lounge chair to make into a bed. I definitely felt this was a little bit of de-ja vu from last week, almost funny in a way. We made the most of the stay, despite still being in pain. I knew the ins and out of hospital life so I was more comfortable and confident as to what to do and expect.

The routine injections, the hourly doses of iv antibiotics, the nausea- it all was familiar. I drank a considerable amount of lime water to promote saliva flow to heal the infection. They were so impressed that I didn’t need the iv saline bag like last time. Though this time around, eating anything was particularly difficult and I remember on the second day when we transferred rooms (they had to eventually give me a private room because I was at high risk for MRSA) the movement made me so nauseous I darted for the bathroom and the nurse became genuinely concerned. The day-nurse I had for this stay stayed consistent for each day, which I found very nice and less questions were asked because he knew me better.

The priest

On this stay I was offered a visit with the hospital priest by the hospital Chaplin. The priest patiently waited for the doctor to finish his consult with me and then walked up to the side of my hospital bed. He was a littler guy but had a big sincere heart. He was a Franciscan Priest, so the rest of his “work” involves serving in his Franciscan community. Once a week he comes to Mayo Clinic and visits the patients. Today he offered confession to me, which I happily accepted. Afterwards he gave me a healing blessing with some oil that smelled of cinnamon and spices!

The time he gifted me was priceless. He could see my struggling spirt, having dealt with illness and pain for so long. Though he also knew deep down that I have what it takes to move on, to carry on, and to fight with the God given strength and endurance that God has given me. He said it perfectly when he mentioned “do you best, and leave the rest to God.” He instructed me that I am to try at every task even though I may fail. I was to simply try with my best ability and not be scared of failure. Its like he knew I was afraid of recovery- of the body I was living in- and how it’s different from months ago when I was more vibrant and healthy. I didn’t know how I was going to do it. To face reality that I had to take more rest days, to space out activities and take life at a slower pace. He knew this heartache was painful but he put faith in the Almighty God and that ahe will bless me and do great things with me.

The priest said I have a mission, one of serving, one of Love. Its a different kind though, because I’m not always physically up for service activities. Its a service of self. Of a smile, a handshake, a hug. Its the way I can be present and care genuinely for those around me. Its the words I speak that are filled with Gods love and the stories I tell that fill others with hope. Its these blog posts, my way of sharing of Gods love and Mercy for everyone. Its how I believe that YES God is healing me and I choose to let him bless me. “Blessed is she who has believed.” These words are true and powerful. Believing in something better and something unseen. This something is God and all of his goodness. I choose to cling to hope and confidence that God is healing me, despite unusual infections, hospital stays and diagnosis’s.

Heart and Soul

Have you ever asked a sick person about their heart and soul? Their body may look weary and worn, but their soul may possibly be healthy and strong because Gods healing has touched the most important aspect of them. Its all up to God and his timing.

 

She knows the Lord.
She hears his voice.
She will not fear.
She chooses joy
…and carries on.

And so the little priest left through the same door he came in. But he left me with a gift, one of renewed confidence in Jesus and healing. Soon after, the nurse came back to finish moving me to a room across the hall because I possibly had MRSA which put me under an “infection code” and yellow protection gowns were needed. At least we got a private room and my mom could sleep on a cot this night. (I didn’t end up having MRSA but it was still a necessity precaution).

Tuesday rolled around and I actually started to feel slightly better despite the strong hourly iv antibiotics pumping through my system. It was still unsure why I got this parotid infection and I was soon going to rule out Sojourns syndrome on Wed. If I continue to have symptoms and by the end of Dec have no relief with the oral treatment, a cheek biopsy may be needed. The main internal medicine doctor was very kind, though and compassionate. He worked closely with the infectious disease department to determine exactly the course of oral antibiotics I needed to treat this over the next few weeks. It is not going to be an infection that clears us quickly, due to how inflamed my parotid gland looked. But he assured me that I can call anytime once I’m home and the Mayo Clinic team will get to the bottom of whatever is causing these reoccurring infections in my face (sinus, ear, and parotid). The possibilities could be an immune system disorder or even a genetic disorder, which will need further testing.

Really going home

Tuesday afternoon I felt more confident with my Mayo Clinic’s team plan. Even though I had a good month or two of healing from this infection at home, I was not in a dangerous situation with a spreading infection. On Tuesday I even got a visit from one of our good friends at our home parish who coincidently had an appointment at Mayo herself and she so thoughtfully stopped by my hospital room. Again during this stay, I had good friends and family praying for me back at home. Knowing this was so reassuring that God would hear our prayers, and had this whole situation in control. There is always room in suffering for God to make a greater good of it, if we submit to His will. I felt renewed hope in my body and spirit that God has a mission for me.

Thank you God for getting the infection under control this time! Amen.

I got discharged from the hospital at around 5:00 after my last 2 doses of the IV antibiotics. My mom and I stayed overnight at an air bnb blocks away from the hospital so we could easily get to my 7:30 am blood draw before my rheumatology appointment in the Mayo clinic physicians building (The hospital is separate from the doctors offices, they are down the road from each other in Rochester MN.) The Rheumatologist ruled out sjogren’s syndrome and said that my reoccurring face infections would need immunology, ENT and genetic work ups. So its definitely not the end to solving this, but I feel confident in Mayo Clinics care and plan for my health. Feeling worn out from having very little sleep and food, my mom and I booked it home for the 2 hour car ride. I think I cried when I got home and saw my own bed. Inside I was little defeated that I didn’t have solid answers, but I knew in my heart that I had to trust and believe in God’s promises for me. In the scilence of my prayers God is leading me and preparing me for something beautiful. He guides me to explore life with eyes of hope. I know I have a mission and even though I don’t have a clear answer, I will continue to live one day at a time loving others like Jesus did.

 

The top print from etsy

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disclosure 3
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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