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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Comments

  1. Susie says:

    Best wishes for some answers. I’ve followed you for quite some time (Susie in Michigan). I, too, have been chronically ill for a good ten years. I, too, was finally diagnosed with Lyme last summer. We do have an amazing Lyme doc here, in Grand Rapids, Michigan. Lyme is horrible…especially if you’ve had it for years. Antibiotics don’t do the trick if you’ve had it for a long time. My doc has other ways of getting it in remission. I had Lyme, Babesia, Bordatella, Mycoplasma, HHV6 and hpylori. All cleared now. I still am working on metal detox (rotten amalgam fillings), and mold exposure. My new tag is “CIRS”. Lyme+mold+metals+ HLA gene mutations= CIRS. Always something! 😋

  2. Stacey Anderson says:

    Your words brought tears to my eyes. I’m so sorry you are struggling to find answers! Your mom was always the BEST women! It doesn’t surprise me she got you in earlier! I will pray you get the answers you need sooner then later!
    Sending love from your OLD (now really old!) first grade teacher! Ms Simenson 🙂

    • I loved reading this comment from you! I showed my mom your comment and she smiled very big! We all miss you and of course you will always be the best 1st grade teacher EVER!

  3. Oh, Caroline, sharing your story will save lives!
    I can relate to both you and your mother having experienced the same scenario, myself, and with my adult child. We are not as far along as you are, in our journeys. Mayo Clinic may be in our future.
    I wait longingly to read “Mayo Clinic Week 1”!
    Please know you have our sincere appreciation for sharing your story!
    Here’s to your continued success in improving your health!!

  4. Wylie says:

    I don’t know why I feel I sudden urge to post this. I don’t normally comment on blogs. Like a lot of your readers, I suffer from a complicated illness that has been difficult to treat. I don’t even subscribe to your blog or anything, it just comes up when I research different healing ideas and modalities. I stumble upon it every couple of months, read whatever is relevant to what I’ve been researching, check your latest post to see your progress, and leave. I think I’ve been stumbling onto your blog for about five years now, not long after I first became ill.

    What I want to say is that in a sense, and I probably speak for a lot of your anonymous health-researching and stumbling readers, I’ve come to feel some kind of emotional investment in your health journey, not just because you seem so genuine and kind, but because the determination of your story parallels our own. I want you to win, Caroline, and have the health you deserve. I will always try and remember to pray for you. I hope the doctors at Mayo were helpful and kind. But even if they weren’t, I know you will succeed.

    • Hi Wylie, Wow your comment is truly from your heart and it seriously made my day!

      I am actually struggling to write about my weeks that I spent at Mayo clinic because it was a long and intensive 4 weeks. But its for people like you that need the encouragement and hope that YES it is possible to get better and sometimes we need support to fight. I can’t wait to share what they found and what I will be doing to heal. There is hope for everyone and every step forward (even the tiniest of steps) is progress.

      I will remember to pray for you too!!

      ~Caroline

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