My Diagnosis Story: From The Archives

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Here's the deal. I am not a storyteller, although I really wish I was. David always tells me that I put way too many details in my stories, I lose track of my main point, and then I always kill the punch line. Annndd he's right on the money with that one.

I envy those bloggers and writers that can captivate you and reel you in with their magical words, making trips to target or baking a cake seem like the coolest experience of their lives. I'll just go ahead and spoil the ending for you, I'm not one of those writers.

But, for the next week I have decided to turn this space into a bit of a story book, capturing details of my days here in Rochester, Minnesota while I am at The Mayo Clinic. I want to look back and remember, and I want you (especially my best friends, family and david) to know what's going on here.

And I know a lot of you are new here, and even those of you who have been reading for a super duper long time.. and even some of you who are my real life friends don't really know the whole story about why I am here. I do not like to talk much about details of my health and all that mess because:

1. I don't want you to feel sorry for me

2. Most of the time I do not even know where to start

3. I will most likely start crying

4. I don't know how comfortable I am with being THAT vulnerable with people- you know, just putting it all out there.

5. I  REALLY REALLY REALLY hate being "that sick girl".

As much as I hate it, it's where I am. I AM "that sick girl". Which is why I'm typing this as the snow is falling outside, laying on a bed provided for me by a loving church.. in a house named "Compassion".

Thursday night I got a phone call from my mom asking if how I'd feel about going to the Mayo Clinic. We'd thrown those words around a few times over the past 3 or 4 years, but nothing ever came of it.

My initial reaction was, I CANNOT miss another week of work because I am sick- we need the money, I can't allow myself to lose another job because my body just wouldn't cooperate. A few minutes later David walked in the door from work. Over sobs I told him what was going on. He immediately called my mom and told her I was going. I didn't need to worry about money, God would provide..my health is the most important thing. And since I am getting cut off my parent's insurance when I turn 26 next month, this is kind of our last available option.

 

At this point we didn't have an appointment, a place to stay, or plane tickets. Over the next 24 hours God opened doors for us to get the last 2 seats on a flight here this morning, and we were given a 9:15 Monday morning appointment with a specialist at the clinic.

My mom said she had called the receptionist RIGHT after someone had cancelled.

Most of the time the wait for something like this is over 6 months. God provides.

(my mom looks a bit like little red riding hood- but I'm sure mom's a lot cuter than she is:) 

SO at 4:30 this morning (lousy timing for daylight savings!) we boarded our plane for Minnesota. 

After our shuttle dropped us off at our final destination, we were stranded in the cold for an hour..which  turns out to be a pretty funny story.. but like I said I'm pretty bad at telling stories so I'll save you the details.

After a fiasco we were finally let into The Compassion House and were able to get our bearings. 

Another sweet lady staying here (who has been here for 6 weeks with her husband after he got a bone marrow transplant) drove us to a wonderful pizza place that served gluten free vegan pizza!! I had to take a picture of it because it is not often that I get to go out to eat and taste something as awesome as this pizza. 

Um. DELICIOUS. 

Anyways, we are within walking distance to the clinic so we slowly walked through the pedestrian subway that runs underneath the clinic and connects all of the many buildings.. taking many stops so I could rest. We braved the cold and walked another few short blocks back to our house. My mom and I ended the night with some leftovers and talks about what to expect in the coming days. 

It has been such a long day, and I am having a hard time writing this because I am just. so. exhausted. 

And I am so thankful for you. Thank you for the texts, the calls, the e mails, the tweets and all of the love that you have and are giving me. While I feel a huge weight of discouragement, I feel so encouraged by all of the prayers that are being lifted up on my behalf. 

After years and years of doctors blank stares and dismissals, I am halfway expecting the same experience here.. but the other half of me is quite hopeful. 

It has been snowing here for two hole days..which seems magical to me. Snow is such a peaceful thing God has given us, making all things white and clean and new. Whenever we are waiting for an appointment, we gravitate to the large windows overlooking the old buildings downtown while we watch the snow float in the air. 
Yesterday (Monday) was crazy and awesome all at the same time. We arrived at the 18th floor of the clinic at 9:15 to meet the doctor that would be in charge of my visit. I believe she is in the field of Internal Medicine. 
Here, you meet with one doctor initially and they serve as the "conductor" to your "symphony".. they orchestrate everything behind the scenes. They tell you what appointments need to be scheduled, and will shift your schedule around during the day if something alarming/eye opening pops up on your tests. 
 I spent a good two hours with her going over all of my past and present medical history, undergoing an exam and hearing her recommendations for my protocol while I am at the clinic. As we left the office I was given a large packet of papers with my itinerary for the next few weeks. 
Monday was packed FULL of tests..lab tests, x-rays, EKG's, allergy tests.. SO many tests. Which were all amazing. I cannot even imagine how long it would have taken me to have all of those tests scheduled at home. We got to the clinic at 9:00, and left the clinic at 5:00 pm. A full work day. 
As we traveled from test to test we were serenaded by beautiful music and singing coming from a grand piano in the lobby of one of the main buildings. Later that afternoon there was a pianist and a flautist. It was really beautiful to me to see people in wheel chairs wheeled to hear the music.. mothers holding their sick babies, elderly couples holding hands with masks on their faces to cover them from sickness.. I began to think about heaven and how one day we will all be gathered around worshiping. Only there we will have NO sickness, no pain, and no sadness. 
Today my mom and I arrived (by way of the chaplain that works with the house we are staying at) the clinic at 7:40 for my first appointment. I saw the most gracious ENT I've ever had the pleasure of meeting in my life. He was kind, he listened, and he educated me. I also got to see the inside of my sinus cavity by way of a T.V. screen. It was mind blowing. I truly cannot get over how kind, helpful and patient everyone here is. I feel SO well taken care of. 
I was not ready for all of the great art the Mayo clinic holds. A whole wall of original Warhol prints, Chihuly sculptures hanging from the ceiling, and giant sculptures and paintings everywhere. A trip to the museum and doctor all in one- you can't beat that! 
Today I also visited the lady doctor. After living 2 years with endometriosis, I was finally properly educated on WHAT the disease is, how it's treated (or not treated), and how to live with it. He spent a good hour and a half talking with me, answering my questions, educating me and REALLY considering all of my medical history as he was trying to find a treatment protocol. As I left he even gave me his card and told me to e mail him if I ever had any questions. Why aren't ALL doctors like this?! I mean seriously, he ADVOCATED for me. Most of the time when I visit the doctors it is an uphill battle trying to get them to listen to what is going on in my body. I walked out of that appointment with a smile on my face because I felt understood. It was a great feeling. 
Tomorrow I have several more appointments, and a few tests. There is still no clear picture at what is going on and causing so much trouble in my little body. We are very thankful that we were able to get a Neurologist consultation bumped up from Friday to tomorrow afternoon! This was a big prayer of ours yesterday that has been answered! It seems like this appointment is going to give a lot of insight into some underlying issues I am having. 
I have gotten so many encouraging e mails, texts, phone calls and messages from you all. I cannot tell you how much it means, and how much your prayers are lifting my spirits. 
As mom and I were walking out of the clinic this evening (and heading to a wonderful Gluten Free Restaurant) I told her that I felt like I had spent a day at church camp/Disney World for sick people. She couldn't agree more. 

Hello, World!

I can't believe it is already Thursday, and I've yet to fill you guys in on everything that's transpired here the past few days. After learning so much, being given so many new "labels", my mind and heart have a hard time seeing it all written down in front of me on this space.. making it known.

Our weekend was so low key..which was wonderful. Saturday I recovered from the hectic week before , and kept my nose glued to my new favorite series, Outlander. If you haven't read them I HIGHLY suggest you do! It's been so nice to have a little fantasy get-away in my mind that I can transport myself into when I get overwhelmed by everything going on in doctors appointments.

Sunday we attended the church that hosts the House of Compassion, went to eat with the sweet lady who runs the place here (who lived in Asheville, NC for 20 years! When she told me that my eyes lit up and I wanted to hear everything she had to say about living there.. since it's my dream to live there someday too!) and we walked in the cold to visit some antique shops.

Monday was another free day away from appointments, so I spent the day taking care of some business things, reading and watching the snow fall outside. 

On Tuesday I started my appointments at the Fibromyalgia Clinic. Tuesday was the initial exam and uptake to test whether or not I had fibromyalgia. Sure enough, I do. 

After several hours at the clinic we walked to an authentic Italian Restaurant who had an extensive gluten free menu!! I have just been so amazed at how many places here understand the importance of avoiding cross-contamination and helping their guests who have food allergies and intolerances. It's been really amazing. 

Yesterday my mom and I sat in a classroom and learned all about Fibromyalgia and techniques to cope and live with this condition. So much to learn.. so much to change.. so much to take in.  I am so thankful that Mayo educates their patients so well. I really do not know what I would do without that resource. 

We got back to the house late yesterday afternoon. I was able to skype with David last night.. I feel like during the days I just kind of go through the motions, not really taking everything in.. feeling wide-eyed and stunned. I don't really give myself the chance to internalize everything and "feel" the weight (and goodness) of it all. 

Today I have my follow-up appointment with my "team leader" doctor, and then another three hour class with more information about fibromyalgia. 

My mom was able to arrange an earlier flight for us home on Friday instead of Sunday. I cannot express how excited I am to get back to my little family of David and Dakota. So excited I feel like I could explode! 

 

 

 

Alabama Home Tour:From The Archives

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Here's another little peak at our newly remodeled home! I found a video on my phone the other day where I walked through it during the demo that I plan on sharing after all of the "new" is revealed.

 This is really one of my favorite rooms of the house, most likely because it holds all of the things I love to do! My sewing machine, painting supplies and camera equipment all are in this little spot. David uses the closes, and our guests use the bed:).
 The color scheme kind of came together from odds and ends we were given/ and we had. The cool folding chair was in the back yard when my parents purchased the house, so I cleaned it up and gave it a new life! The beautiful amour was a gift from our neighbors in Nashville. It now holds my machine, all of my art supplies and lots of fabrics and patterns. I have plans to paint the inside one day and make it a lot more organized, but right now it works perfectly for what I need it for!
Every visitor wants to feel welcomed and special. If you ever came into our home to visit, we would welcome you with open arms, and try to make your stay as pleasant and relaxed as possible!! 
Flower Essences:
* Corn Flower Essence: Taking initiative in projects, enthusiasm, creativity, concentration, strengthening and new projects are undertaken
*Lettuce Flower Essence: Inner quietude and strength, creativity.
*Peru Balsam: Encourages calm, warmth, peace, comfort, opens the heart
*Songline Orchid Flower Essence: To help one attune to one's unique spiritual path, the path which is yours and yours alone.
We really have seen these essences awaken and change things in our lives, and the lives of people who have stayed in this room. I am always so amazed to watch the way God works through the things He has given us in His Creation. It is such a Holy experience. 

Here's a peek into our new living room!
You can see some of the before pictures here!
I'm still searching hard drives and SD cards to find all of the before photos, the transformation really is amazing. It doesn't even look like the same home (thank goodness!)
this table was given to us by my parents, david refinished it a couple of years ago.. while he was staining it he found my sister's name etched in the wood. Etchings of a little 3 year old girl. Such a fun treat.
 Pillows are made by me using left over fabric my mom gave me from her business.
 David made me our kitchen table as my wedding present. We even used it at our wedding for people to sign in with our table cloth. He and his bff also made these fun benches out of old doors we found at the habitat restore in Nashville.
The large artwork on the wall is one of my favorite pieces I've ever painted. I love the colors, and how everything turned out on the wooden "canvas". I gessoed the top only so that the colors would be more vivid and the wood would still be raw at the bottom.
 David made this table out of windows we found and found the wood dumpster diving! Dakota knocked out one of the panes a couple of months ago while we were gone to work. Sneaky dog.
 The large driftwood on the wall was found at the lakehouse last winter. We found it the weekend after my miscarriage. It is a special reminder to me, and I love it.
 The top artwork is by my friend Sarah Nutt, the bottom says "Oh Darling, Lets be adventurers." 
 We found this chest at a thrift store in Colorado Springs and have carried it around with us since then. It houses love letters, journals and special photographs. And, as you can tell, our collection of stickers. 
If you missed the post about essences, you can find it by clicking here. It's some really powerful stuff.
Living Room Essences:
Vervain Flower Essence: Overcare for welfare of others
Sea Pink Flower Essence: To release blocks that interfere with harmonious flow of vital life force
Cherry Flower Essence: Light -hearted, hope, inspiration to otheres, see good in everything, optimistic, positive, genuine soul stirring, laughter, even-mindedness, ability to make light of difficulties.
Marjoram: to encourage calm, balance, integrity, perseverance, sincerity
Dining Room Essences:
Chamomile Flower Essence: Calms tension, especially in the stomach region.
Filaree Flower Essence: Letting go of worries and anxieties that tend to unnecessarily limit one's free participation in life
Red Chesnut Flower Essence: Sending positive healing energy to others, release worry over concern for others
Sandalwood: To encourage warmth, sensitivity, serenity, peace, harmony, wisdom, insightfulness and unity

The back entrance, kitchen and breakfast room all flow together in the new design of this house.
We love the big french doors that open up to our deck from the breakfast room, letting a great breeze into our home. 
As you can see, some things still aren't QUITE finished- like the upper cabinet doors. 
Easy access to all of our dishes! 
If you didn't catch the last house tour post explaining flower essences, you can access it here!
Kitchen Essences
Cedar Flower Essence: Scores clean all mental and etheric debris; know who you are and why you are here.
Black Currant Flower Essence: Clears 7 generations; I am the vitality and freedom of God in every cell in my body.
Myrrh: Let go, forgive and move forward
Breakfast Room Essences
Grapefruit: Facilitates prayer
Lavender: Incorporates heavenly energy leading to physical energy. 
Grape Flower Essence: Becoming love
Coconut Flower Essence: Perseverance/clearer spiritual focus.

Building Your Cairn : From the Archives

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From the archives of eat.live.make, originally posted on January 10, 2013

Since I have been a hiker I have been a lover, admirer and builder of cairns. 

The cairns in Arches National Park once helped me find my way back to our trailhead in the deep snow when footprints weren't visible. 

And for a while, this photo hung in our living room above our couch.

Not necessarily because I thought the photo was amazing, but to serve as a remembrance.

To help me remember where I came from, and where I am going. 

I don't know if your aware of this, but the first "cairn"(or then God called it an ebenezer)  was built by the Israelites as a reminder  of where God had brought his people. 

So that when their children, and their children's children asked about the stones, they would be told of the way the Lord brought the 12 tribes of Israel and the Arc of the Covenant  through the cut off waters of the Jordan River . 

Since then, people have built these simple structures of stacked rocks to serve as a guide when traveling or hiking in the wilderness. 

They serve as a way to help the hiker find themselves safely home.

But to me, cairns mean so much more. 

I have walked through several hard seasons of life. 

Many heartaches, many disappointments, many triumphs, and lots of pain and uncertainty. 

And during each season, during each heartache, I am reminded that I need to remember.

Just as the Israelites were told to build an ebenezer to remember where the Lord brought them, I must too remember. 

For my sake, for my husband's sake, for our children's sake and their children's sake. 

That my journey can serve as pillars of remembrance  of God's providence and deliverance. 

In life, I am not able to build structural cairns to remember each deliverance and each journey. 

So I get creative. 

I have prayers I keep. Journals I keep to remember. Paintings and art I have created help me remember. And tattoos help me remember. One of my next tattoos is  going to be a simple cairn. 

So that I can remember, and give testament for the rest of my life to God's faithfulness

Finding Your Happy

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another one from the archives of eat.live.make, written on January 13, 2013

What Makes Your Heart Sing?

What makes your spirit come alive? 

I have been thinking about this question for the past couple of days. 

What makes me come alive? What makes my heart sing?

I believe that God has given each one of us special talents.

Not only has he given us talents, but He has also given us gifts that make us come alive. 

I think it is the way He romances His children. 

Every time I pick up a paint brush, I am transported to a different world, and I come alive. 

When I am outside, exploring in the mountains..partaking in the beauty He has created..I come alive. 

The changing of the seasons fills me with awe and wonder.

LOVE makes me come alive. Love for my family, love for my friends.. love for the lonely. I come alive when I can love.. and when I am loved deeply. 

It makes me so happy when I see someone's soul spark with light and excitement. 

When I witness something inside of them that makes them come alive. 

I don't think we were meant to go about life forgetting the things that make us happiest, and make us come alive. 

I see this so often in people, they don't nurture the passions that have been placed deep within them. 

And their souls don't spark anymore. 

So, my friend.. what makes your heart sing? 

I challenge you for the next week to do things that make your soul spark and ignite. 

Pick up your guitar and play it for 5 minutes.. go on a walk and enjoy the nature that you love so much. 

Build something with your hands, or create something with your sewing machine. 

Whatever it is, don't forget those things and don't allow your life to get so busy that you do not take the time to nurture the passions that are in your heart.

Becoming A Better Quitter : From The Archives

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By nature I am not a quitter. 

I'm an overachiever, and a perfectionist. Always wanting to be the best and do the best and be my best. 

But over the past 4ish years, I've had to learn how to become a better quitter.

It's hard thing to do. 

Admit to yourself that you just.can't.do.it. 

And it's not me, it's my body and my health. 

I'll be able to start something, and then a few months into it I will crash. 

I become sick, my body becomes weak and I become exhausted and in pain all of the time.

It's a cyclical thing. 

It happened in college, it happened in Colorado, Nashville and now it's happened in Alabama. 

But I am getting better at this. 

I am learning to not beat myself up over having to quit. 

Knowing that it is not ME. 

I am NOT the sickness and the pain. 

But it sure feels like it's me.. When it ruins relationships, when it ruins job opportunities...my mood. 

This past week I reached a breaking point. 

I have been sick, weak and exhausted  for over 2 months now. 

It would be ok if this was something that's never happened to me before, but it happens all of the time. 

 

I went to another doctor, trying to figure out what's going on.

And it was what I  thought. 

Something chronic, not acute. 

My body can't fight this off. And my body can't keep up what I'm doing. 

 

Every night I come home exhausted, David puts dinner together for us ..we eat in bed and I fall asleep. 

I get up the next day, work 10 hours and do the same thing all over. 

Then, on the weekends I rest so that I can do it again. 

 

And, after visiting the doctor, we knew that we just couldn't keep doing this. 

I have to get better. It's not an option. 

Our marriage and my happiness depends on it. I am always amazed at the way God works. 

Friends have been praying for us (and I love you all for it) because we are having such a hard time  praying and asking..and not knowing what to ask for. 

Last week someone contacted me asking if I'd want to nanny for her family 3 days a week? 

Less hours. Less responsibility.  I'd be home at 4pm, rather than 6pm every night. 

Then my sweet grandmother called and told me she would pay for my medical bills. 

I would be able to be treated by the gifted Naturopath I work for!

So, last Wednesday I quit. 

Knowing that I will be making less money, and not knowing where the remaining money is going to come from. 

But trusting that God will provide. 

He has NEVER not provided for us. 

It was hard, and is always hard to quit.

Admitting that I just can't do it. 

Thoughts on Miscarriages

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The below was written on April 5th, 2012 after my second miscarriage on a previous blogsite

As I am now almost {physically} recovered from my second miscarriage, I am now able to let my mind and heart process the weight of it all.

I do not know how to express in words what I feel. But I do know how to express some things I have been mulling over in my brain since we lost our first pregnancy in January. 

I have this tendency to not want to verbalize or talk about what is going on. But, this saddensme because it seems like the quietness of it all is what has been bothering me.

Lately, when I share my story with friends or family I am always met with the affirmation that someone related, or close to, or even friends or friends parents have experienced the same thing. 

Maybe not even a miscarriage. Maybe even the loss of an infant. 

Why is this not talked about among women? Why are we so scared to share this struggle of infertility or as my doctors say,"spontaneous abortion" to the community of women around us?

I understand that he pain is real. Oh, how real and heartbreaking it is. 

But it would be less heartbreaking and more hopeful if we had women who came beside us and shared their stories of loss, and their stories of redemption.

If we had sisters who walked beside us and told us that the pain of infertility or loss is real, and if they were able to share stories of doctors who helped them, or prayers that helped them connect with God again. 

One of the most painful things for me during these experiences is to have people tell me that it is not a big deal. Or that I should move on.

If we women were able to share our stories and talk about the physical and emotional pain that follows a miscarriage,  then others would know the effects a miscarriage can have on one's body and soul.

And if we were able to talk about and give voice to the loss, then we would also open ourselves up to a community around us that could celebrate the life that we held inside of our womb...even if only for a short time.   

I was told by my acupuncturist that eastern civilizations and eastern medicines allow time for grief. That when a women miscarries she is sent away to a safe place for a month for her body and soul to heal. 

These women are even expected to rest. They are expected to have sadness. And their whole community gathers around them and helps bear the weight of the struggle. 

What would it look like if our busy culture allowed time for this? What if we allowed time for grief (for any circumstance)? What if we allowed time for healing? I can only imagine how different things would be. 

I wear a charm on my necklace (pictured above). It is a flower with a ruby stone attached to it. My mother in law gave it to me after we lost our first pregnancy. She herself has experienced loss.  I wear it to remind me of the life that I carried with me. Of the hopes we had for the child. I wear it every day so I do not forget.

David wears his every day so he does not forget.

The company that makes these keepsakes and writes cards and has perfect poems is called La Belle Dame. 

I share them because I do not think that life needs to be forgotten. And even if you will not be able to carry your baby with you, you can carry a reminder of their life with you always. 

I say all of this to say that I will not be silent. I will listen, I will walk along side ofyou. I will celebrate. 

And I will pray, even when words do not come.