Ehlers Danlos Syndrome

Two years ago I was finally diagnosed with a genetic disease that has been effecting me my entire life: Ehlers-Danlos Syndrome. From my first knee surgery in 7th grade, to my hysterectmony this past August, EDS has taken a toll on my body and my health. 

Ehlers Danlos Syndrome is "s an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes. (This is the collagen of granulated tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Commonly associated with keloid formation. Reticular fiber. Also found in artery walls, skin, intestines and the uterus.--COL3A1). The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of themutation can be life-threatening.

As a visual individual, I have wanted to be able to show my friends and family exactly what Ehlers Danlos Syndrome looks like, but a lot of the sources that I found online were either grotesque, or very poor quality photos that I was embarrassed to show.

After several months of talking myself into starting this project, I found a creative friend (Chris West // A light Pro) to come alongside me and capture the first part of this project with me on Canon Beach in Oregon. His eye perfectly captured the beauty I wanted to show through these images.. creating something that is not only informational, but also shows that there can be beauty within brokeness. I am excited to start planning the next two parts of this personal project and having creative friends come alongside me to help with the imaging. 

It is my hope and desire that these images can not only be a great resource for patients suffering with Ehlers-Danlos Syndrome, but it can be a visual representation of the disease for doctors, medical staff and the families and friends who support individuals who have Ehlers-Danlos Syndrome. 

Ehlers Danlos Syndrome Resources

After my diagnosis with Ehlers-Danlos Syndrome, I was so overwhelmed by the life-long chronic issue of all of my diseases that I couldn’t start reading or researching or really doing anything for it until the following year.

I was doing everything I could to somehow get my body back into functional order that I just didn’t have to space to take in anything else. If you are recently Diagnosed and you are reading this then you are light years ahead of where I was! 

I don’t know how your brain works, but I AM AWFUL with scienc-y things. I have a friend who is a few years younger than I am whose WHOLE FAMILY has EDS, and shes is SO GOOD about keeping up on research, finding doctors that help her and understanding the science behind it all. ME? Not so much. I guess I say that to say I have no idea how your brain works, so I am going to send over the resources I have that have helped me, and other resources I know about that I don’t understand.

First off, I will say that the first thing you should do is see a Physical Therapist. They will equip you with certain (easy) exercises you should do DAILY to help build your core muscle strength. That really is the only way you can help your joints stay in place since our connective tissue is so loose! When you get a prescription from your doctor for a PT, you also need to get a prescription to see a O.T, specifically one who specializes in hands. Silver Ring Splints (www.silverringsplint.com) have changed my life. But you have to be fitted by an OT for these. Insurance will help pay for them and they will stabilize your hand joints.. which means no more pain in your fingers and radiating pain down your arm!! Do this ASAP. My doctor here doesn’t “believe I Have EDS, he just thinks I need to see a counselor” so he won’t write me a script to see an OT. But hopefully your doctor will be on board! 

On the same lines as a PT, I recommend you start swimming (even water aerobics), maybe riding a stationary bike, and NOT EVER DOING YOGA!. I am going to start doing pilates soon (I hope!) and I’ll let you know how that goes. Even if it seems impossible, get in the water for 5 minutes a day. You’ll slowly work yourself up to being able to do a little more. BUT DON”T PUSH YOURSELF!!! If your legs start to go numb (like mine always do) STOP. With EDS you can definitely over-do it, so slowly (so slowly!!) build up your strength. It’s imperative to your health!

There’s a few good reads I recommend:

The Hypermobility Handbook (http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1431790275&sr=8-1&keywords=hypermobility+handbook )

Happiness In A Storm: http://www.amazon.com/Happiness-Storm-Illness-Embracing-Survivor/dp/0393329054/ref=sr_1_1?s=books&ie=UTF8&qid=1431790324&sr=1-1&keywords=happiness+in+a+storm

Our Stories Of Strength:: (recognize the person on the front?!) http://www.amazon.com/Our-Stories-Strength-Ehlers-Danlos-Syndrome-ebook/dp/B00X8TG60I/ref=sr_1_1?s=books&ie=UTF8&qid=1431790360&sr=1-1&keywords=our+stories+of+strength

also, EDNF. org has some great articles and also does podcasts with doctors! (that I don’t understand! haha) :: http://www.ednf.org

For Pain. I HIGHLY recommend you seeing the fine people at ANY community acupuncture clinic. Community Acupuncture is affordable and can be found in almost any major city. Just google "Your City Community Acupuncture Clinic". Go as often as you can. Acupuncture has literally saved my life and I can’t recommend it enough for pain management. 

I honestly try not to dive too much into all of it because I can’t allow myself to go down the rabbit hole (I’m sure you understand that feeling!). I only choose to read things that are helpful and only choose to fight my battles that I NEED to fight. If I went to the doctor for every little ache and pain my life would be filled with doctors appointments, and I just can’t allow that to happen! 

Lastly, I have a EDS/Fibro/Chronic Pain pinterest board that I pin helpful articles, devices, and funny things to that help me cope, help me learn and keep me researching. If you want to dive deeper, I recommend you visiting! :: https://www.pinterest.com/mnewsomphoto/edsfibromyalgiaendochronic-pain/

Days 1-15 Of my 100 Day Project

I've been super inspired recently by @alliepal (who took 100 days to paint) and @fridamkahlo (whose work was inspired by her life in chronic pain. )

If you don't know, I have a rare genetic disease called "Ehlers Danlos Syndrome". EDS is "EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. The collagen in connective tissue helps tissues resist deformation." You can learn more about it HERE

My job photographing people is the best job I could ask for, and I have been wanting to push myself creatively to bring new perspective to the photographs I take for my amazing clients. I also hope to  bring more awareness to "invisible illnesses".. So, I'm taking on the 100 day (ish.. I'm giving myself some grace for days I may not be able to function well) challenge and am creating work surrounding the theme of my life and daily experience with Ehlers-Danlos Syndrome. 

 I am going to be using my skill as a Photographer and expanding upon those photos with mixed media and different sewing techniques. I'm excited to share some of the behind-the scenes with you guys (and a bit of the "why" behind the influence of each piece) on my IG story, while sharing a photo of the daily work through instagram posts. 

The first fifteen days of the project have been mentally and artistically challenging in ways I never expected.. but already so rewarding and fun. 

I'd love for you to follow along on this journey !

How I Became A Photographer

I have a thing for nostalgia.. boxes filled with old photographs (all labeled and placed in specific places depending on type), journals filled to the brim with stories and dreams of my past, video tapes from my old camcorder all packed and labeled neatly for me to watch and remember. Today, I started to clean off my hard drive and got sucked into the vortex of my past and my memories.. which is where this post stems from. I saw clearly the pattern of my life and how my dreams have always been evident, but as things got in the way I continued to fight for what my heart longed for. 

I'm not sure how this is going to go, or how it will resonate with you.. the reader.. but I am writing and sharing a piece of my story to hopefully instill encouragement into your heart and a fire in your belly. Life never goes as planned. We all have insurmountable fences we have to jump over and rivers we have to cross. I believe in you and the passions in your heart. I know those things were put in your spirit for a reason. I believe you are precious and are beyond worthy of the things deep inside you that stir you, and you are enough to make those things come true.

As a child, my heart beat for creativity.. for painting, for acting, for imagination.. it also beat for people. You can probably look back on your childhood and remember the things that made you happiest.. I imagine those things still make you happiest today.  I recall seeing people who had casts or braces on their body in public, and crying deep tears of grief for their pain. My heart aches for people's aches, it still does.  Those two things have always been at the core of who I am as a person : creativity and empathy. 

As I grew up, I began to love sports and excelled in them. So.Much.Fun. Soccer and basketball became a huge part of my life from elementary school to early high school. When middle school sports started to pick up, I had my first two knee surgeries.. tearing my medial meniscus in both knees about a year apart from each other. After my first year of playing sports in High School, I tore my knee again that lead to another knee surgery. I remember after the surgery sitting down with the orthopedic physician and him telling me that I could no longer play sports. With being so young, there was no way my knees could take another three years of competitive sports in high school. 

My heart was broken. Everything I knew and loved..the community of friends that I had made through sports.. seemed to have been taken away from me in an instant. Neither my doctors or my family could understand what had caused my knees to continue to tear the ways they had.. but it was the reality and I knew I could either give into it or I could make the best of my situation. Looking back, the heartache seems so trivial.. but I guess most of us would say that during that stage of our lives any minor set back or hurdle seemed life-shattering. Thanks to encouragement from my friends and family, I turned again to the thing I had loved so much as a kid.. art and creating. I began to feel alive again in the most wonderful way. I spent several years of High School in Advanced Placement art : creating backdrops for photos, decorating for events, painting floors of our art room, designing t shirts for school and church events, and learning how to develop film in a dark room. I made amazing friends during that time of my life who are still so very dear to me now. As hard as it was to give up sports, I am so grateful to have been pushed into the thing that had and will always make me feel alive. 

After high school, I entered into college with a passion for art, but also aware that I may not be able to make a career out of studio art like had always dreamed. Unsure of what I wanted to major and find a career in, I quickly decided on Elementary Education.. it was a way I could still use art in my daily life and a way I could influence kids and their families.  During the first semester of my sophomore year of college, my jaw locked up.

I couldn't eat solid food for several months, couldn't walk or talk much, and spent most days quietly eating baked potatoes in my dorm room. (I was so cool) Physical therapists couldn't help, so I entered into my first jaw surgery. I slowly recovered from being wired shut for several months and things slowly seemed to return back to normal.

A year later, my jaw started hurting again with no apparent injury or onset. This time worse than before. After consulting several doctors, it was determined that the first jaw surgery I had undergone was causing my facial bones to lose their mass and recede. My jaw-line quickly became much different than it once was, and I soon returned to eating baked potatoes alone in my room again.

I received a second set of braces to help straighten things out before I underwent the reconstructive surgery. The braces would later serve as a way to make sure my jaw stayed in place as it healed. During this time I also underwent a 5th knee surgery and was lucky enough to be able to intern with an amazing youth group in Indiana. Upon returning back to school for my senior year, I made the decision to give up elementary education as a career due to the continued nature of my TMJ. I knew I couldn't talk for long amounts of time, and that education was a career my body couldn't take.  Spring semester of my senior year I moved back home and underwent a crazy reconstructive facial surgery. 

Post my reconstructive facial surgery, I was diagnosed with hyperthyroidism which lead to a host of uncertain outcomes and possibilities for me. Thankfully, my mass was benign, but I've continued to have thyroid problems since. From that point forward David and I got married, and quickly did whatever I could do for work. I worked for a preschool which was short lived because I continued to catch whatever sickness the kids had.. I next worked as a nanny for several different families and decided I'd try my hand at being an esthetician....so I worked two jobs for families and went to school at night, thinking that the calm and serenity of an esthetics career would be beneficial to me.  

After six month of juggling two different jobs with children, and working long nights and weekends in school, my body again decided it was done and couldn't keep up with the high demand and busy lifestyle I was putting it through. I was diagnosed with endometriosis after several months of intensive testing, went through an endometrial ablation surgery whose recovery took about six months. Because of the extent of my recovery, I had to quit school along with the several jobs I was juggling. It was evident my body didn't want to work a 9-5 like normal people could, but it was impossible financially to work part time. 

Fast forward a couple of years.. David and I relocated to Alabama and I landed a job at a Naturopathic physician's office as the front desk/admin assistant. The job seemed ideal due to the little amount of time I'd have to talk and the healthy nature of the environment I was working in. Upon our relocation to Alabama, I also decided I'd go for it and try my hand at photography. I'd always loved the medium (re: boxes of photos in my closet and high school photo class), but was always intimidated by the business side of things. I worked for the NMP for a year, and 6 months out of that year I was sick with a viral infection that wouldn't go away. Doctors in Alabama didn't know what was going on, and I knew I had to once again quit a job because my body couldn't seem to get better. It was at this point where I knew I had to take my photography business full time and try to make as much money as I could to support us while David was in Nursing School. It was a huge leap of faith, but I didn't have another option. 

In January of 2013 I took a part time nanny position for a family in Huntsville to supplement my income while I really tried to make my photography business work. In my spare time I'd read and listen to podcasts to gleam whatever I could about running my own business and taking decent photos. Most of my "spare" time was spent in bed sick, so it gave me the perfect opportunity to digest as much as I could about photography (HUGE shout out here to Creative Live). I offered free sessions to families who were willing to let me take their photos, and used our dog Dakota as practice when I started learning about ISO, aperture and metering. By March of 2013, I was still sick with "flu like symptoms" and nothing I did could kick it. In April I was going to be off my parent's insurance, so they decided to try to take as much advantage of it as they could while I was still on their policy. One Thursday afternoon my mom called and told me to pack my bags because she had just secured me an appointment at Mayo Clinic on the following Monday. I quit my nanny position (quitting a job NEVER gets easier) that Friday, and we flew to Minnesota on Sunday.  

I went into testing at Mayo thinking they would possibly find some sort of viral infection, autoimmune disease or even something like cancer that was causing my body to not heal. Little did we know that all the set backs and surgeries and crazy joint problems were all connected. From genetic sequencing, elimination of other various diseases, and my medical history it was determined that I own a rare genetic disease called Ehlers-Danlos Syndrome. I've owned this gene my whole life as evident with all of my previous surgeries and hypermobility problems. Now I had a name for it.. no cure, but my journey since my diagnosis has been much more illuminated than it was before. 

Returning from Mayo Clinic with the knowledge that my "condition" was a lifelong journey that would forever be apart of who I was gave me a lot of power. I think, looking back, I could have let that truth wreck me.. but instead it made me more determined to fight for a life that I wanted. A life where I could not only have a career, but also thrive. Working from home was an ideal career choice for me: I could work odd hours whenever I felt up for it (like editing on the couch or in bed all day), take days off when my body and pain flared up, leave enough room in my daily energy schedule where I'd have time to help out around the house and run errands AND save up energy for days I'd be shooting sessions and/or weddings. I had already been planting the seeds to become a self-employed photographer, now I just knew it was the only option I had. Photography was the only way I could take care of my body and make money. When I started the journey into learning about photography two years before , I didn't realize that it would also meet the deepest needs of my heart: creating art and beautiful things AND loving and serving people. 

While my "condition" doesn't define who I am, it has shaped my life in ways I could have never known or predicted. From an early age it has continually directed me down the path I wouldn't have chosen on my own, but I needed to take. It has given me the most amazing opportunity to run my own (kind of successful!) business, to travel around the country taking photos of amazing people and to learn the beauty of peace and stillness.  The dream I had of becoming a mother was replaced by a dream to love my friend's children like they were my own. The dream I had to become a teacher was replaced by the dream to create beautiful photographs of beautiful people and walk beside them and learn their story. The dream I had of mentoring children was replaced by mentoring other people who are looking to start their own business, and live a healthy life for themselves and their families. 

My journey in my career of photography is just beginning, just as my journey with EDS isn't even half way through.. but I am able to tell you that I won't give up on either of them. I've been given amazing people who believe in me, amazing clients who have continued to put food on our table ( yeah, that's you Andrea), and a family who has my back on good and bad days. I am able to have surgery when I need it because I make my own schedule, I can go to doctors appointments whenever they have an opening, I can travel to see friends, sit on the beach with no agenda and take long phone calls when someone needs to talk. I can do all of this because the career I have made for myself allows it.  

The hurdles you have to jump and the paths you have to choose may seem small compared to my hurdles, or as you are reading this you may be lying in a hospital bed undergoing yet another round of radiation and it feels like no one will ever understand the pain you endure. We all have battles we have to fight, we all have setbacks and rocky roads and dark pathways that never seem to see the light. Your dream may be to simply wake up tomorrow and get out of bed. I believe in you, and I know you can do it. I also believe thatyou can breathe deeply knowing that the talents and desires you have been given are not something you need to ignore. Whether you dream of becoming a tight rope walker, a rap artist, a doctor or a painter.. you are equipped with everything you need to make it happen. The road to get there will not be easy and it will not happen quickly. You will face doubts and fears and road blocks and people who don't believe in your dream. I want you to know that I believe in you. I believe that you are capable of greatness.. and some days greatness looks like being able to get out of bed and take your dog on a walk. You should celebrate the little battles you win just as you should celebrate the big ones. You are worthy of the things deep inside that stir you. You don't have to ignore them, and you are enough to make those things come true. 

 

Handmade Bedroom Makeover : From The Archives

 We got the light colored dresser at a thrift store and David re-finised it last summer. The dark colored dresser (which is still on the list of things to refinish) was David's in college and we have been using it since we got married.
 The quilt was made by David's great grandmother and we love sleeping under it's weight. We have a dream catcher on my side of the bed because I wake up with nightmares almost every night. It reminds me to pray for peaceful sleep.
 I made the curtains and the pillows  from left-over fabric from some of my mom's jobs. The quilted pillow's fabric was found at an estate sale several years ago.
You can find the DIY for the triangle painting here.  The frame was painted pink with some leftover spray paint we had and part of the quilt from the estate sale was cut out to go in it!
 I love these little pom-pom flowers. I simply cut up some garland I had and hot glued it to some sticks I found in our back yard. So simple and so fun. If you don't have any pom-poms already made up, you can find a similar tutorial here. I made similar pom-poms for hanging on the ceiling of the bedroom beside the bunting.
 You can find an easy DIY BUNTING here, and a similar tutorial for how I did the garland here. I used crate paper and cut into squares and then threaded those through some string.
 I made this for David for Valentines Day this year, and used a thrift store frame to frame it.
We made these shelves when we lived in Nashville out of cabinet doors from the Habitat for Humanity store. We have them up with some hooks we got from Home Depot. Now that the shelves match our wall color, I'm dying to paint them but haven't gotten around to it.
 You can find a DIY for this frame HERE. I love the simple statement it creates in our small bathroom.
Dakota is a huge fan of the new bedroom too! We ditched our bed frame (it is a OLD iron frame that has been handed down in my family--it traveled from Missouri to Colorado in a covered wagon!). We like the cozyness having our mattress on the floor creates. Kind of weird, I know:).

Time To Rest : From The Archives

Lately, I've been reading through Proverbs and Ecclesiastes.. and seem to continually migrate to Ecclesiastes 3. You know, the famous "Time for everything" passage. In that I have been thinking a lot about rest. About healing and Sabbath.

Around our home, we are very intentional about periods of rest. We try to unplug at least once a week (usually on Sunday when we are both home) and unwind without work or stressors or even cleaning up around the house.

But what does this look like when you are connected to your work (thank you i phone), and you feel like you need to be continually marketing your business or promoting things online? It means unplugging. Unplugging yourself from the constant demands you put on yourself, unplugging your mind from making to-do lists and tasks for yourself, and spending time just being.

I struggle with this daily.

The balance of rest and work. Being more intentional in my work and my home life. Being present in every situation.. mentally and physically.

Our society tells us we need to be constantly busy, constantly involved and connected with all things all at once. I kind of hate this. I know it is going against the way I was made to operate. Against the rhythm I was created for.

Friday night we left home around 5pm and scooted down to Fl. for a time of rest together. I intentionally turned my phone off during the days, and tried my hardest to let my mind rest from making lists and reminding myself of the things I needed to do when I got home.

We got home late last night feeling refreshed and renewed.. and asking ourselves how we could be more intentional with Sabbath in our daily routines. With David working and going to school and me working from home we feel like we are always meeting deadlines and are unable to totally unplug from it all.

I'll be home this week (I have SO many things to get done!) and then will be heading to Florida again the following week with my sister-in-law and my little nephew. I plan on being very intentional with my time there..trying to stay away from social media as much as I can, and unplugging from everything. Spending time in complete rest and Sabbath.

What does this look like for you?

Are there ways that you are intentional with rest in your lives? 

Traveling With Chronic Pain

Over the past week I have spent some time reflecting on my trip and how it was affected by my fibromyalgia. This was the first big trip I have been on since my diagnosis of fibromyalgia, AND the first trip I have been on without my husband by my side. I've been contemplating whether or not I should share some of these thoughts on this space with you guys, and have been praying over it for the past several days. My hope is that it will be beneficial for some of you who struggle with chronic pain to know that you aren't alone in what you are walking through, AND to give you hope that you can travel just like a normal person- you just have to be aware of what's going on with your body!
When I left David in Alabama and drove up to Nashville, TN. to catch my flight to Portland I cried for the first thirty minutes of my drive. My emotions were all over the place. I was feeling so excited and blessed to be able to travel out to Portland to spend time with my sweet friend for her wedding, but I was also scared and nervous to be embarking on such a epic adventure without my advocate by my side. You see, David is my voice of reason. Sometimes it drives me crazy, but I am beginning to learn to listen to his reason and his "level-headedness" always respecting what he has to say. During busy weeks at home, David is the person who always brings me back to earth. He reminds me to rest, he tells me to not overcommit myself or to not take that hike when I have already spent the majority of the day cleaning the house. He reminds me that I am no longer able to do what I could once do, and keeps me in check with my realities. Even when I have crazy ideas like going for a run around our neighborhood (I mean, what was I thinking?!) he sits me down and reminds me that I am capable doing so much, but that my body does not operate like it once did. At home I now have a routine that works for me.. measuring my days in energy spent instead of hours used. I map out my day by measuring how much energy I will spend during certain parts of the day and making sure I leave myself enough time to recover from the energy spent before the next task.
You can understand my apprehension as I approached this trip. We decided to check one of my bags so that I didn't have to carry too much through the airport. David knew that it would be hard on my body before I even reached my destination. And he would continually text me to make sure I was taking care of myself. After my first day in Portland, I knew something to had to change. I was with friends who lived their life like any normal 27 year old would.. morning work outs, walking to dinner, running errands during the day and staying up until midnight. And even though my friends had walked with me through the complications of the past several years, they hadn't seen me in action (or lack of action). I am not one for  confrontation or one to speak up for myself.. and I knew I had to.
It was a hard journey for me emotionally. I struggled with the realization that I could no longer participate in life like I used to, that I could no longer keep up with my healthy friends. That my bed time needed to be earlier and that I would miss out on those late night talks. It is hard for me to say no. But as the days went by my energy kept fading, my pain increased and my body stopped working. Instead of participating in the day I would find myself counting down the hours until I could rest or get away and take a much needed nap. I knew by not being vocal about my limitations I was not only doing myself a disservice, but I was not being completely present in the lives of my friends.
One morning I woke up and could not make it down the stars without walking on my hands and knees. My legs were in so much pain they literally could not carry my weight. This is when I knew I needed to be vocal about my limitations (even it if was embarrassing to me) because I needed to be able to function as normally as I could for the remaining week and a half while I was away from home. After setting clear boundaries for myself things got a lot better. I took a day to recover, spending a lot of time resting and off my feet. I booked an appointment with an acupuncturist and took a hot epsom salt bath. I tried to do everything I could to make sure my body could rest and recover like it needed. If only I would have allowed myself to recognize my limitations FIRST thing on the trip, then I wouldn't have gotten into such bad shape!
And once I was totally honest with myself and with my dear friends about my limitations, things became a lot easier. They began to fill David's role in my life for the next two weeks, making sure I was resting, asking me if I was ok, checking menus to make sure food was okay for me to eat. They looked out for me and never did they once think that I was trying to skip out on fun with them or made me feel like I was a burden to them. This trip was the first time I had truly been around "normal" people since my diagnosis, and could could really see the limitations my health put on my body. Slowly, I was able to accept those changes and come to peace with the way things are now. I began to be extremely thankful that my body was well enough to actually travel across the country and spend time with friends.
Those limitations may mean that the days are slower, and the nights end sooner.. but slower days makes time together that much more enjoyable. Instead of staying super-busy we were able to slow down, have meaningful conversations and enjoy one another's company over cups of coffee and episodes of Parks and Recreation. Instead of feeling a burden on those around me, I felt embraced and loved and protected by the people that love me the most. I felt completely appreciated for who I am and what I am walking through, never judged or cast aside. Plans were made considering my allergies and my need for rest, and I was moved to tears by the generosity and kindness of friends and strangers.
Yes, traveling with chronic pain, fatigue and allergies may look different than traveling for a normal person, but it can be done. It makes traveling that much more adventurous and creative. It allows for time to sit and enjoy the culture and the people you are with. It makes for a greater understanding of how your own body operates and allows for opportunities to be vocal and take care of yourself. Hikes may be shorter, and the days may be harder, but it is totally worth it. I am so thankful for where I am today. It may look different than where I was 5 years ago, but how can we grow if we always stay the same? How can I be challenged if I don't have roadblocks in my path?

Pursuing My Passion : From The Archives

A few weeks ago I participated in a really exciting opportunity with some wedding vendors in our city. I have been so excited to be apart of this network, promoting one another and helping to build our relationships with brides and others in the industry. I am so excited about this opportunity and cannot wait to share more with you guys in the months to come!

Going into this shoot, I had a clear idea of how I wanted things to play out. I imagined open fields, flowers, pretty brick walls, lots of laughing and playing.. annnd you can see that none of those things happened. The Tuesday I took these photos, it was hailing outside, I had a fever and cough and very little light and space to work within.
I later returned home to edit these photos, and they were far from the perfection that I wanted. I had an idea of how I wanted things to be, and because that didn't happen I have been highly disappointed in myself. 
This morning I was thinking about these photos.. praying that God uses them to provide business for me and for the other ladies inside our little collaboration.. and then I had a startling realization. 
My stress and critique of these photos reminded me a lot of how I view my life. 
When I looked at my life ten years ago, I imagined that it would be a stark contrast to what it is today. I imagined that I would have a career, we'd own a house, I'd have a few sweet kids, and we'd be traveling and exploring. And I have been fighting to try to achieve those things that I had imagined my life would look like..the perfectionist within me always wants things to be perfect and work out  how I think they should. It's quite apparent that things have not played out the way I thought they would. We've moved several times, I've had to change jobs so many times due to poor health.. and money has been such a stressor on our little family for so long.
Since I have been here in Minnesota and visiting the Mayo Clinic, I have seen God work more visibly than I have in a LONG time. He has been gracious to provide answers for us, He has opened up doors to very specific appointments that I've needed, and He has provided me with insurance to be able to afford all of these things. I can clearly see His provision for me as I have been here. He has cared for me. And I have trusted Him to care for me. But when I am in the daily stress of things.. paying bills, recovering from being sick, building a business..I seldom trust that He can and will provide what we need. I kick and scream when he puts blocks in the road I thought I was supposed to go down. I become apathetic when all of my efforts seem to be vein. And I mourn the loss of the life I wanted. There are some days that I can surrender. I can let go of the things I hold dearly in my tight fists and give them up. But, I do not walk in surrender. I do not live my life in the peace that God is loving, and that He provides for all of our needs. I am now walking a path I would have never chosen to walk, but it is beautiful. I am pursuing a career that I never thought I would have picked, but it is beautiful. And in the stress of learning to live with less I can see beauty. Today I fell on my knees for the first time in a long time and surrendered my stress and my need for perfection into the hands of my Father. I breathed in deeply and found peace.

It Gets Easier With Time : From The Archives

There's that old saying, "Time heals all wounds".. in a way it does, and in another way it doesn't. Time has always healed heartaches from love or friendships lost, but it doesn't make the pain go away.

January 1, 2013 was the anniversary of our miscarriage. I made myself busy that day so that I wouldn't be able to stop and feel the pain.. but I remembered all day long. And I had friends who remembered, which meant the world to me. And on January 1, 2012 I never thought the pain and sadness of losing our child would get any easier to bear. I will always remember how my sweet friend took me to the emergency room and stayed with me during the unknown, and how David was able to come down during his work day to hold my hand during the tests.

Over the past year I have been on a roller coaster emotional ride as I have dealt with the loss of something precious. I remember at first I would just pray that I would be able to make it a minute without weeping, without physical pain.. then I prayed for a day without the sadness.. and slowly the days turned into weeks.. and now the weeks turn into months. I am thankful for the friend time has been to my heart.

But I still remember. I still go on with things, and feel as if something is missing in my life. I count back the months and think, if I would have been able to keep my baby it would be "x" number of months old right now, and I would be a mother. So many of my friends have had babies or have gotten pregnant within the last year. My heart is so happy for them, but at the same time I weep when I hear the news. It's like see-saw between joy and heartache, and I have no control over it.

Our families haven't forgotten either. On Mothers Day this past year my parents got me a bouquet of flowers to let me know that they remembered that I am a mother to a sweet child in heaven. My mother in law gave us a beautiful ornament over the Christmas season so that we could remember the lives that we created.

And now my heart still yearns to be a mother. I sit in our bathroom and weep because I miss our child, and because I am uncertain of what the future holds for us. My heart cannot bear to go through what I went through this past year again, but I do not think my heart can bear never having children of our own.

People ask all of the time where we plan to go from here. I honestly do not know. I know that right now my body is not well enough to support another life, and I know that right now we cannot afford to have a family outside of us two. I also know that I cannot bear the deep heartache of loss again. But that is not what my heart years for..I yearn to have a sweet child of our own. This, like everything in our life is an unknown. And I rest in the peace that the Lord is good and that He gives good gifts. He knows what is best, and if He allows us to have a child one day I will bless His name.. and if He doesn't, I will bless His name still.

I know I will never forget, and I always want to remember the life that I carried.

I am thankful that I am where I am now. That I can hold a sweet baby without weeping, and I can rejoice with friends and family when they bring a child into this world.

I am thankful for time.

My Diagnosis Story: From The Archives

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

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

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

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

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.