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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disclosure 3
07.30.2017

Mayo Clinic Day 1

It’s finally time to go to Mayo!

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

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

My buddy

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

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

Sunday April 23:

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

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

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

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

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

Monday April 24:

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

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

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

 

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

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

Internal Medicine appointment #1

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

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

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

Time to meet mom

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

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

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

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

Time to start the testing!

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

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

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

 

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06.01.2017

Time to prepare for Mayo Clinic

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

The sinus struggle

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

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

Presynope gets worse

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

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

Abnormal tests

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

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

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

An outsiders perspective

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

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

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

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

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

It’s God plan

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

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

Starting the process for Mayo Clinic 

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

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

Not accepted!

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

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

Perfect timing

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

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

to be continued “Mayo clinic day 1

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02.10.2017

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.

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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.
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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.

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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.

Trust

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

caroline

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01.07.2017

My step in the deep snow.

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The first glance I got of the steep incline from the train window set my heart on fire. I honestly have no explanation for why a snow covered mountain gives me this joy and peace. Courage was in my soul. My adventure was just about to start and I knew I was going to love every second of it.

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It started weeks before I boarded the mountain train. I was on the phone with my mom talking about Christmas break and the typical question came up “So…what do you want for Christmas?” I had always dreamed of taking my own adventure someday and I felt like the time was now. So I asked for a train ticket and an air bnb room in the mountains. It was not the typical gift, but my mom got just as excited as I did and said the experience I will get from this trip will last a lifetime. So the plans started forming…

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Before I knew it It was 5:00 am and time to get out of bed to catch the first bus. I was so excited to know the day had come to have my adventure. The adventurous side of me often got squashed by my fragile health but today I was thanking God that I actually felt good. A big part of me wanted to find out what I can do and who I really was at this point in my life. I’m only 22 but I have gone through a lot with the ups and down of a chronic illness. I felt like God was tugging at my heart asking me to do something spontaneous and be ok with no knowing what comes next.

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I took a few buses to get from Boulder to the Union station and it was quite fun hauling around a weekend bag through the big Denver city. God has a lot of fun things planned for me. The first was my train buddy. This 80 something year old grandpa who shared his story about life and his perseverance through a hurricane and his wife death and how he never lost his faith. I really do love getting to know older people because they have so much wisdom to share.

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As the train slowly chugged up the mountain, my jaw started to drop out of awe and amazement. God created these mountains and the closer I got to the top, the closer I felt to Him. After the 10 minute long tunnel the view was pure white. Snow was piled high in Fraser and as I stepped of the train, I felt the cold pass me by. It was awesome because I love the cold. The snow was exactly what I needed too because Boulder was still sunny and warm. I was craving a cold snowy adventure. I quickly looked at my list of what I wanted to do up here in the mountains. Here is what I wrote: 1.) have a spontaneous adventure 2.) try something new 3.) make a snow angel 4.) make friends with random people 5.) listen to God’s voice 6.) eat snow

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I was dropped off the train at the “station” which was basically an outdoor platform. I never considered a bus from the platform to the air bnb because I wanted the adventure of the mile walk in the snow…with my suitcase. Little did I know, the sidewalks were piled with snow so I ended up dragging my suitcase in the snow. I took a few stops to unload all the snow gear and put it on, to make the bag lighter. I’m sure people were wondering where exactly I was going. But the big question was.. did I know where I was going?

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Eventually I made it and ended up getting a 5 second ride form a handy man up the very steep hill to the airbnb lodge. He wanted so badly to help, so I let him (don’t worry he looked like a nice stranger!) and he gave me a high five as I got out of the car. This little act of kindness gave me the security that this town was sincere and friendly, which indeed it is.

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I was exhausted and took a nap right as I got in the door. Oh, but before that I found a spoon and bowl and filled it up with fresh snow to eat. Then when I woke up, it was time for exploring and finding food so I walked to the grocery store down the road and decided to pick up some things for the weekend. I got to know the friendly air bob hosts. The husband and wife showed me around the kitchen and made me feel very at home. They thought it was quite funny when they found out I ate snow. They told me they normally hand wash dishes and I turned around and quietly unloaded my bowl and spoon from the dishwasher. They asked if I ate dinner and I said “kinda…it was actually a bowl of snow.” They broke out laughing but I guess it was not they typical first meal their guests eat :). I decided to go to bed semi-early so I could wake up for church feeling refreshed. The snow was just starting to fall and I excited for the morning.

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I woke up to big thumps on the roof. The snow was getting heavy and sliding off the roof. Kinda a fun way to wake up. The first thing I noticed was how clean mountain air is (It felt so good to breath!).

So sometimes there are those people you meet in life that really make an impression on your life. I got to spend the pink Sunday (the 3rd Sunday of Advent) with the best Catholics in the Mountains. A friend picked me up and we ended up driving to get another young guy and girl. We are all about the same age and share the same faith so it was really fun to talk and get to know each other.

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As we entered the beautiful church of Our Lady of the Snow and found our pew, the priest opens the confessional door with a young girl fainted in his arms. I had met this priest when I came to this town with my mom on our little trip to this mountain town a few months before. It was a simple look as he darted his eyes to our pew that he wanted our help. I offer water to the young girl as my friend checks her pulse.  Her mom runs through the door to see what is going on with her daughter. It ended up being little bit of dehydration.

I remember the mom looking up at me and asking “who are you?” This moment was imprinted in my memory because it was a question I have been asking myself for a while and partly the reason why I wanted this adventure…to understand better the person God is forming me into. I explained I am visiting from Boulder and my friend goes to this church. But that question really got me thinking inside about how God is shaping me.

Yet you, LORD, are our Father. We are the clay, you are the potter; we are all the work of your hand. ~Isaiah 64:8

Community is a foundation of daily life. It’s not that I have not found great people in Boulder, but I feel like I’m searching for my community still. This unsettled feeling is God trying to tell me to push a little further and keep seeking until I find the people He wants me to be surrounded by. This small mountain parish gave me a glimpse of Gods Love.

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People need each other and there is no way around it. I sometimes try to force myself to be ok in certain situations, a big one is feeling lonely in a new environment. I crave a familiar face or a voice but all that is familiar is back in Minnesota. A phone call to family helps, but I know Gods is opening a door in my life to new people and opportunities.

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The rest of the day was filled with witnessing unexpected goodness of these new Catholic friends. Its always a relief to be sitting around people where you can watch a movie about John Paul 2, talk about God, your favorite saints, pray the rosary and listen to Catholic music. Allowing God into your day is so natural and fulfilling when you are surrounded by people who Love God with all their heart and mind. The 4 of us made a fun breakfast together, did random walks in the snow, and I even got my snow angel in :).

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One memorable thing was pulling out a rope rosary I had been carrying around with me for 2 weeks. I had a feeling I was going to give it away to someone and it was one of the young Catholic guys I met that weekend. He is discerning the priesthood and liked to say the rosary. So I found it fitting and he could wear it on his wrist like I saw my brother and friends back at home do. I like how God prepares us in random ways like that.

I find that true friends help each other grow in their faith. It does not always matter how long you know the person or even how much you know about them. Sometimes you just get the opportunity to be friends easily and conversation comes naturally. Those are the friendships and people God had planned from the beginning.

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The 3rd day (Monday) was a strange day. I felt like I had not gotten closure to the questions in my heart. I walked around the town and got some coffee. But the day felt empty. I was scheduled to board the train at 5:00 and honestly I didn’t want to leave because I think I fell in love with the mountain town. I decided to meet my friend before he had to go to work. I had no idea I was in for a hike in the deep snow, but its exactly what was missing from my adventure.

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It was a bit of a struggle, one foot off the path and you got buried up to your thigh in cold fluffy snow. So this is what hiking in snow was like! I was stepping in deep snow and taking the plunge and risk of freezing my toes off. But I didn’t care really about being cold. All I wanted was to hear Gods answers to the questions I had holding inside. It was silent so I just kept walking.

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Thats how life is sometimes. You just have to keep walking, one step at a time. It may be a desert you are walking in, or a rainforest or on a beach. But for me, its stepping in deep snow. Blindness to if the step in front of me will lead me to get buried in snow or if I will actually keep my balance. A friend walking behind making sure I don’t freeze me toes off helps too.

I willingly jumped on a train to lead me here. I opened my heart to the unexpected. Why? Because honestly I felt like I was running from something inside. I wanted to find out what and I wanted to let God dig me out of the snow and reach out his hand. It was time I let go and trust God.

“Wherever You Go”

There’s a train leaving your heart tonight.
There’s a silence inside your head and you’re running you’re running from it.
But I’m coming for you, coming for you, wherever you go.
I’m coming for you, I’m coming for you wherever you go.
Open your hands and look into my eyes; all that you see here,
you’ll soon leave behind, so open your hands and look into my eyes
’cause I’m coming for you, coming for you wherever you go

As I fell over and over again into the deep snow, the fear of sinking slipped away. Before now I was very scared of the deepness of life. I was scared of more pain. I avoiding making mistakes. But all of this blocked off the love God was trying to place into my life. He was coming for me, wherever I was going.

Stepping into the deep can be scary but fun too. There is joy in getting buried in snow even if the cold stings. Sometimes we can’t hear God, but we can only see and experience what He is doing in our lives.

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I left Fraser ready to start a new chapter of my life. I was ready to accept any pain and deepness in front of me. But I was also ready to experience joy in every step I take. I knew I needed to trust God would bring me good catholic friends (close by) to guide my step or simply walk along side of me, because we are not meant to live life alone.

Life is about sharing Gods love. Having joy and willingness to help guide our friends on the path to God and also let them help us too, is the best gift.

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So a week goes by and I repack to leave for Minnesota. I was a bit nervous going back home for the first time since I moved here. So much has changed, but it was time to get on that plane to go meet my family back home for Christmas. The trip was filled with love from my siblings, parents, friends, and Coopers slobbers and hair. It was exactly what I needed. A big dose of love and support. Only pictures can describe how fulfilling this trip was.

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I did not know that my leaving the hometown of Minnesota can become the source of talk among families. I honestly don’t mind people talking because its a good story. “A sick young Caroline gets better and decides to follow Gods will and leave to the mountain state. Not knowing anyone or even any street but the call in her heart got her on her feet.”

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I do miss my big snuggle bug. I got used to sleeping with orange rubber toys and waking up with dried up slobber on my face. I found myself sneaking into my sisters room to snuggle up next to them at night. I sat at the top of the stairs listening to my parents conversations as they cleaned up the kitchen. As much as I dreaded the drilling/pounding for the kitchen lights, stove, countertops, faucets, etc. (aka project make-lunger-kitchen-the-heart-of-the-home), I eagerly awaited seeing the handy men from my church that I grew up at. I cherished the familiar voices, the many hugs and kisses and the cold winter icy snow and the howling wind across the Minnesota lake. The nonstop dinner conversations and banana split therapy for a down day are only a glimpse into the love my family has for each other. Never before have I appreciated home as much.

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I knew it was going to be hard to leave, but remembering that God brought me to Colorado gave me the reassurance that I will survive once I got back. It took a lot of willpower to convince myself I will be OK. Knowing I had no family or good friends waiting for me, gave me a feeling of emptiness. I did not realize this emptiness was being filled with sadness instead of joy and excitement for new opportunities.

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God has allowed this emptiness and I decided it will only be filled with His Love. All I needed to do was lift up my eyes to Him and reach out my hand. Trust.

I got to the Denver airport exhausted and feeling like I left something. The feeling was very truthful becasue I did leave something behind me. I cleared away any lie that I had told the person I used to be when I was very sick. I had shown my home town its possible to change, its possible to do the impossible if God is your guide.

My childhood friend in Minnesota told me that every hardship I have endured while living in Colorado was necessary and it ultimately got me to the path that God has planned for me. It’s here, and I feel it with all my heart, but the feeling is emptiness. It’s emptiness that is going to only be filled with Gods plans for my life that only He knows right now. What’s left for me to do, is be patient and keep walking in the deep snow, unafraid of sinking. I have learned that control only fills the heart with sadness and fear. Emptiness can be scary but it can be so good.

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Feeling broken is ok. Its part of Gods plan to rebuild us. Stepping in the deep snow and doing what I am scared of, breaks down the walls of lies and fears of the past. Something is needed to break the cycle for each and everyone of us. We all get weary and need a friend to walk along side of us, and its ok to sometimes reach your hand out so they can pull us out the deep snow when we fall off the path.

I love these lyrics of Audrey Assad’s song…
“You’ve been let down, it’s true
Your pain is so easy to see
You’re haunted by your history
And it feels like you’ve got no escape

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
You just gotta reach out your hand”

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Not much time has gone by and I am already seeing Gods love fill this emptiness I once thought was bad. Catholic families I never knew before have let me care for their kids. Being a nanny and caring for Gods children gives me joy. Each day something new happens and you have to tackle it right on the spot.

I don’t fear being lonely anymore but instead I pray for the people in my life and the people I will meet in the future. I want to show them that once they are broken down and have that hole of emptiness, it can be filled, but only with Gods love. Even if its only a smile, the light inside of them has been lit.

A person once told me that when I feel unsettled, its God trying to speak to us so we do something about it. Peace is what God wants for us and its what we should seek. We should not settle but always seek for a true and honest life.

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It was about 5:00pm mountain time and I was watching the horizon as I got closer to Boulder. I was tried from the long day of travel and was already missing home. I was lacking courage. But a glimpse of the snow filled mountains lit me heart of fire once agin. I took a deep breath, it will all be ok. I forgot that feeling and instantly the emptiness inside was filled with hope and courage. God speaks to each of us in different ways and he was speaking to me at that very moment.

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Deep snow is beautiful because its there that I find Gods helping hand waiting for me. It’s in the deep snow I find happiness.

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“It is Jesus that you seek when you dream of happiness; He is waiting for you when nothing else you find satisfies you; He is the beauty to which you are so attracted; it is He who provoked you with that thirst for fullness that will not let you settle for compromise; it is He who urges you to shed the masks of a false life; it is He who reads in your heart your most genuine choices, the choices that others try to stifle.

It is Jesus who stirs in you the desire to do something great with your lives, the will to follow an ideal, the refusal to allow yourselves to be ground down by mediocrity, the courage to commit yourselves humbly and patiently to improving yourselves and society, making the world more human and more fraternal.”

― Pope John Paul II

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To complete this season of my life in one blog post I want to wrap up a few things. I’m still studying to be a catholic doula.  I get antsy on my days off that are set aside for studying so I bounce around on my exercise ball/chair, listening to Audrey Assad, eat spoon fulls of brain food (coconut oil) and sniffle through boxes of tissues (aka 4th sinus infection in 6 months!). So that left me bringing in new Years eve with an unexpected visit to the Dr. and getting prescribed antibiotics and sinus surgery soon to expand my ever beautiful sinus bones that God designed a little too narrow. Please pray for me, I’m a bit nervous.

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I met a great Catholic friend who loves saying novenas and also eats paleo. I’m keeping myself occupied nannying cute little ones and enjoying getting dumped in snow this past week in Boulder. I picked my patron saint of 2017- St. Gianna. I find it fitting because this year I am nannying and studying to be a Catholic doula.

God is calling me to live each day and breathe each breath to the fullest. It’s good and I’m thankful.

 

 

caroline

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