Daily Struggles

      What does EDS mean for me? Lately I have been having some bad days. I went a good two months symptom-free, but it always comes back without warning. I cannot walk too far at all without my legs deciding they are done. When they decide they are done, they feel like jello and I can hardly keep it together to make it to chair. The pain is sort of throbbing, tingling, but so deep I cannot get to it. I want to beat on my legs with my fists. It doesn't help, but for some reason I do it anyway. And its not just when I'm walking. Trying to sleep is always an issue because I cant get comfortable. The picture above is from a support group I am in. EDS is a connective tissue disorder that affects your whole body. Yes, your whole body! Think of everywhere you have joints or muscle... connective tissue holds them together. My connective tissue is faulty. The girl in the picture is wearing braces. I have them all. In a bin in my room is my "EDS" bin with physical therapy things, knee braces, a back brace, and custom wrist braces. Luckily, I don't have to wear them all the time and never at the same time. Its just a daily thing. I wake up and decide if it is a good or bad day and what needs bracing. I did learn the hard way that if I act too tough and do not wear the brace I need, it will dislocate! I used to end up at MD 360 or the ER with dislocations, but now that I know what it is and that it will happen often, I am able to "relocate" things on my own. OUCH!
      I have been trying to find positive moments in this past week as I have been struggling with the pain and being annoyed that it is slowing me down. I was reading my "Jesus Calling" every night before bed, and every night it spoke to me in some way or another. For example, on June 27th (a particularly bad day) it said "Rest with me a while. You have journeyed up a steep, rugged path in recent days. The way ahead is shrouded in uncertainty. Look neither behind you nor before you. Instead, focus your attention on Me, your constant companion. Trust that I will equip you fully for whatever awaits you on your journey." What an awesome thing to hear! Though I do not know what my body will feel like day to day, HE DOES. He is there ahead of me and promises not only to watch over me, but to equip me for whatever awaits. Isn't that so reassuring? Whatever you are going through right now whether it be health related, relational, financial, anything....He has equipped you to handle it and He is there before you.
     I have been so encouraged by the comments from some of you and how this has touched your life or someone you know. I encourage you to leave comments on the blog for others to see, as a lot of people may be encouraged by them too. As you read this blog, know I am praying for you! For whatever journey lies ahead, and whatever journey you have been on already.

"I am with you and will watch over you wherever you go, and I will bring you back to this land. I will not leave you until I have done what I have promised you." Genesis 28:15

Validity from God

So I am not sure why I was so hesitant to start a blog. I've lived this "story" and I don't always find it very interesting :) But I kept feeling that tug from God, and yesterday was the day. I couldn't decide on a name for the blog, but then I thought of one of my favorite verses, Jeremiah 29:11. "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." That has been my life verse for quite a while, as I had to put full trust in the fact that, through all of my illness and hardship, God had a bigger plan. So I named the blog God's plans, not mine.

As I was rolling around in bed last night, wide awake, I decided to read my "Jesus Calling" devotion book. If you do not have one, it is a must-have. It is my favorite devotional and always seems to speak to me. I opened it up to the date, June 18th and I was blown away. There was my validity from God. The verse on the page was Jeremiah 29:11 and the opening sentence was: "You are my beloved child. I chose you before the foundation of the world, to walk with me along paths designed uniquely for you." I felt like reading this was a little wink and a nod from God. Validity. Though my paths have not been ones I would have chosen for myself, they were designed uniquely for me and with a purpose.

Tomorrow I will explain more about my EDS, but today I wanted to share this awesome God moment with you! Have a wonderful day and watch for God's little winks and nods.

Trip to the Mayo Clinic

My trip to Mayo was filled with "God signs". In our small hometown airport, the first person we saw at 7am when we arrived was my mom's doctor. The doctor, who over 20 years ago, diagnosed my mom with a "strange muscle disease". They didn't really know what it was but she was wheelchair bound for a while and then walked with a cane. Her doctors had not seen anything like it and just treated her symptoms with various injections, IVs, and therapies. So to see her doctor after so many years was definitely a God moment. My mom explained where we were going and why. He looked at her and said, "this has to be genetic. I bet whatever she has, you have too."

We arrived in Minneapolis and it was snowing like crazy. All flights were cancelled into Rochester. Our appointment was first thing the next morning and we couldn't miss it. If we did, we would be put back in the pool of appointments and this trip would be for nothing. We rushed down to the bus area of the airport and sat and waited for a bus with tons of other people trying to go to Rochester too. Mom and I plopped down next to a nice looking lady who began talking to us. We could tell immediately she was a southerner as well. She was going to Mayo too, and this was not her first time. She told us all of the ins and outs and what we needed to know to get through the process quicker. Each bus came and went and we were never on them. (There was a long waiting list) After much prayer, asking God if it was His will, we would get there, a nice older man came up to us. He had gotten a cab and wanted to know if we wanted to split it with him. (It was a very expensive cab ride, so of course we wanted to split the cost with someone) We took it as a sign and jumped in the van with him. He was a nice grandfather type who was also going to the Mayo Clinic. We chatted the whole ride there and I knew he was put in our path for a reason.


We started my appointments bright and early the next day. After many tests and office visits I was starting to wonder if I would ever get a diagnosis. I asked one doctor to please refer me to genetics because I felt like it had to be the same thing my mom had. It was way too coincidental that at the same age my mom had the same symptoms (and still does sometimes). The neurologist was hesitant and said I wouldn't get answers from there, but she referred me anyway. We went to genetics, did more tests and family history, and....drum roll please.....got a diagnosis. FINALLY! After 10 years! Someone is acknowledging my pain and giving it a name. Ehlers-Danlos Syndrome. And yes, it is what my mom has. I have never felt such a weight lifted off of me. I felt like I lost twenty pounds in that moment. I said a silent "thank you" to the man upstairs for bringing me here and then to my mom who stuck with me throughout the whole journey.

Though it felt like the end of a journey, it was only beginning. Only now, with a name.

The Start of A Blog

So I decided to start a blog, in hopes to help encourage others suffering from chronic illness or any other hardships in life. Here is the beginning of my story, with more to come!

About 10 years ago I started getting sick. I had strange symptoms and went to multiple doctors in my hometown to search for a diagnosis. In the beginning they decided I had endometriosis, which is a medical condition where the cells from the lining of your uterus grow outside of the uterine wall (and other places it decides to). So I started getting treatment for that and symptoms started to ease up a little bit. I couldn't understand why none of my friends suffered this pain or saw so many doctors. Why me? My senior year in high school I noticed a golf ball size knot sticking out of my abdomen. Again we went from doctor to doctor with no answers. We kept hearing "It couldn't be a hernia from where it is located".  After much frustration and prayer, God showed us the way. We found an amazing surgeon who told me he trusted me and if I thought it felt like a hernia he would go in and see. Low and behold I had a hernia behind my rib cage. Unheard of, yes, but impossible, no. Yet, there was no explanation of why or how this happened. I couldn't figure out how this was God's plan. Why was He putting me through these medical mysteries while my friends were living an normal high school life? After the repair, I moved on with life, finished high school and started my freshman year of college.

Freshman year was a doozie. My plan was to do college cheerleading and have a blast all 4 years. God's plan was different. A few months in I was doing some standing back tucks and fell on my head. I had a concussion and was out of commission for days. And also out of cheering. Now what? I moved on and tried to enjoy my first year, but I kept feeling sick. I thought, maybe dorm life is making me so sick? I was constantly in the university health center for one reason or another. One day while walking to class, I collapsed. I couldn't feel my legs. I panicked. What was going on? After a visit to the ER and seeing a neurologist, they decided it looked liked MS (multiple sclerosis), but they just weren't sure. I didn't match all of the symptoms, only some. The collapsing continued throughout the year then my hips starting hurting. The pain was unbearable. I did physical therapy and cortisone injections in the hip bone, but nothing helped. I ended up having double hip surgery my freshman year of college. I was only 19 and the ball and socket of both of my hips had corroded away. The tissue in between them was just not there anymore. After months of recovery, my hips felt great. (I had yet another amazing surgeon) Throughout the rest of college I had several more surgeries to fix one thing or another that seemed to be "falling apart". I struggled with my relationship with God. There were times I was angry and thought, Why Me? And other times I felt closer to Him than I ever had. 

After college, the symptoms continued, as did the surgeries. I had my gall bladder taken out and several operations to remove the endometriosis that kept growing back on my uterus, bladder, and colon. My poor body couldn't take much more. To make matters worse, I was in a car accident my first year out of college. Hit on a mountain highway and flipped multiple times, I suffered a closed head traumatic brain injury. Through the therapies and rehabilitations, I grew so close to God. I realized I was given a second chance and I needed to make the best of it. My entire attitude changed and my life turned around. I was living every day for God and hoping to touch other people's lives along the way. I was determined not to let my illness (whatever it was) get me down. I knew God had some plan for my life and I was just going to follow along. I stopped trying to plan out my every move and my future. With 11 surgeries under my belt, I was determined to live each day with gratitude and not regret. I was sure there was a reason for all of this.

January of this year my symptoms were so bad I could hardly get out of bed some days. My legs just did not want to work. I went to several different neurologists, had multiple MRIs, CTs, and Xrays, all with no definite answers. I had confusion, dizziness, and terrible muscle weakness. They blamed some of it on the car accident, but I knew it was something more. They all thought it looked like MS, but no one was sure. They scheduled a spinal tap, and my mom decided it was time to do more. We called The Mayo Clinic and presented my case. The lady on the phone said the neurologists would review my case and get back in the next week, but the wait time was a few months to get an appointment. My phone rang the very next day and I was accepted to Mayo Rochester, MN. Just in time to cancel the spinal tap at home, make hotel reservations, and book a flight to MN. 

Mayo trip details to come in next post :) And don't worry, there was a diagnosis!