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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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.
























disclosure 3

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.







disclosure 3

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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Take courage and do it.

Dear God, whats wrong?

For weeks and months I had this funny feeling something was wrong. You know that feeling deep inside your bones. It’s an instinct you can’t shake but can’t find a solution for. I was smiling and going about my day on the outside, but on the inside, I was in pain and did not know what to do.


My nightly prayers felt they were not being answered. It did not seem like God was listening or guiding my step to the solution. Next step: I took my questions to my priest. The great thing about being Catholic is that we receive graces in the sacrament of reconciliation. Not only that, but the words a priest speaks can reach the very depths of your heart and soul. It’s necessary for life itself.

Honestly all I wanted was to know why I was still struggling with bits and pieces of my health (specifically my sinuses). I just wanted my immune system to kick in and kill my never ending sinus infection. It was a mystery to me. I wanted to believe that God made the body so it can heal itself when given the right tools…but why was mine struggling? I did not want to live on antibiotics for the rest of my life because I was beginning to feel very tired and run down. Why did it feel like I could never get a full breath? I was getting winded walking up the stairs to my apartment (I started thinking “am I THAT old?”)

My sinus anatomy

I knew my sinuses were very inflamed and infected and could not drain. Sinus problems haunted me since high school. I knew I could not breath through my nose. A year ago my doctor brought up the possibility that my reoccurring infections were due to an anatomical problem. The words flew past me because I was not ready to hear it. I was scared and stubborn of “giving up and giving into surgery”. God had more work to do on me obviously.

Once I moved to Colorado, the problem did not get better. But the newness of starting over was just what I needed. I was quickly led to skilled doctors, sinus specializing chiropractors, infectious disease specialists and nothing worked. I honestly was loosing hope the pain in my head would never go away. But I still held onto wanting to know and make the decisions.

The same words

When we want to control our lives, that is not good. God wants us to trust in Him.

I remember the day I saw a priest at a visiting church, he asked me if I was ok. I told him I was getting impatient and sicker by the day that no one could figure out these crazy sinus infections. Calmly he said that “God is willing this to happen, there is nothing I can do just yet.” Ouch! I was not crazy about this answer but I kept it in my memory.

Fast forward one month and I ask a different priest what he thinks, and the answer was almost identical. “There is not much you can do about this condition, but trust God has given this to you as a “gift” to change you.”

Fast forward one week and for the 3rd time I bring up this pain to my priest. He looked at me deeply in the eyes and said that he “thinks God has given me this sinus problem, not as a punishment but out of love. God only wants me to let go of what I am holding onto most in life…control”.

It finally clicked.

But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” Matthew 19:26

All along I wanted to control this situation. I wanted to know the answer and just get better…all in a time frame. I was still scared of too much medicine. I was scared I would never get better.

I remember this day clearly and I sat down in the church pew and told God that I was ready for him to help and I would step down and let Him do the work. It’s when we become meek and humble that God can start to work within us. This is exactly what happened.

It’s time to listen, take courage and just do it

I got referred to an ENT weeks before Christmas break. I put it on the bottom of my list because I had been to one in MN and he basically did nothing. So then I go to MN to visit my family and was almost bed ridden with sinus pain for some of the time. I get home and spend New years eve in the ER with a worse infection. I guess I learned my lesson. My thought process was ” if it did not help before, why would it be any different now.” This is where I started to lean on my own understanding and figured I knew the answers.

But I could not shake a conversation my mom and I had when I first moved out here. She casually said “what if you find that one doctor in Boulder that actually can do something big, and give your body what it needs to recover.”  After everything I had tried already, I thought why not and scheduled the ENT appointment.

I found myself sitting in the office of a skilled surgeon who simply pointed to the scan of my skull. She showed me the grooves and hollow spaces in my sinuses. I was fascinated..but there was one big problem- there was no passage way left for air. It was less then a mm between the bones.

It was not all in my head, finally an answer. Some people take it as bad news, but for me, it was a relief. The infections never left because there was always a pool of fluid stuck in my sinus cavity. The bones in my head were formed in a way that did not allow fluid to drain. I remember a time in high school where my sinuses felt “tight”. Over the years it slowly got worse, but I slowly got used to it until my normal. That “normal” transformed into a inkling something was not right. I went about my day obsessing on how others could breath so easily, and I could not!

Next step was to stick the scope inside to see whats going on. Kinda an intimidating gadget. I asked for no anesthetic because of the side effects it gives me. So I grip the sides on the chair, she injects the decongestant liquid and tries to maneuver the scope inside my sinuses. But no luck- it was pretty much swollen shut even with the strongest decongestant/membrane shrinker. At that point I knew there was no more thinking or pondering..there was one answer that I had to take the risk and just do it. Time to jump right in.

Time to let go

When I got the news sinus surgery was in my future. I asked the surgeon, how soon? She said we can try a few things…but I blurted out. “No please, I have tried so much, I just want to breath.” After going through the list of things to try before surgery (most of which I had already tried) we set a date 2 weeks out for the surgery. She completely  agreed, I needed a change and relief from infections.

Wow that was quick! But she wanted to make sure that I did not have to go another month of antibiotics (I was already on month 7 of those bacteria killing pills.) Everything after that went smoothly like it was all in Gods hands. The paperwork, the phone conversations, the dates…it all just worked out. This kind of situation reminds me of how Gods timing works and feels. It’s almost too easy to be true. God never wants us to stress over the little things. All it took was my “yes” and becoming weak so God could do his work.

Bless me please 

I asked for a blessing before my surgery, and my wise priest said a good will come of this. Not only will I get better physically, but I will get a chance to let go and trust God even more. It’s a scary thing to hand over your life to a surgeon and anesthesiologist. But he was right, its an opportunity to make peace with whatever control that fights inside.


When any of my friends of family heard of this upcoming surgery they all had the same response. “You will be so much better afterwards.” I did not believe anyone through all my fear and pain. So I was still trying to control the outcome, kinda silly, but I think this was my coping mechanism. I honestly think I was in more pain the months before the surgery then the weeks after.

The pressure inside was unsettling and suffocating. I felt numb. The numbness was just a sign that my body was tired of fighting this endless infection and it needed a helping hand. It was in this numbness that God worked deep inside my heart. He taught me its ok to let go of this fear and control. Its time to stop running from it, but take courage and do it.


After this, I did not hesitate. I made the appointments, took the bottles of pills and fasted before the big day (thats just part of the procedure before anesthesia.) I told the family’s I nanny, I would need time off since there is a limit to how much physical activity I’m allowed after. The week before I even went to confession.

I felt ready for the big day. I went through all the motions and slowly Gods will for me started to sink in. I finally chose to trust the unknown. I chose to trust that surgery was good. I was trusting help was on the way.

“Rise up; this matter is in your hands. We will support you, so take courage and do it.” Ezra 10:4


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