A healthy day

Today was a good day! A healthy day. David and I had the privilege of going to the Masters today. I kept insisting he take his dad or a friend so that he could stay all day and have more fun, but he wanted me to experience it. I had never been! So we went today and stayed just as long as I would last. For healthy people, planning things ahead of time is no big deal. For people with chronic illness, we never know what each day will be. I am blessed today was a good one. I wake up each morning praying my legs will work (sometimes I can hardly stand or walk on them) that I don't get a migraine, and that I can last all day with whatever the day brings. I fell asleep last night in the middle of my prayer, but He heard me! I woke up and my legs were cooperating and I felt good. The masters was absolutely gorgeous. It's nothing anyone could have really described to me either. It's something you have to experience and I'm glad I did. We followed Greenville's Bill Haas, shopped for souvenirs, and I ate one of their famous egg salad sandwiches. Delicious! We stayed about 4 hours and then I knew I was on borrowed time. My legs started to feel like jello and my feet were swelling. So we went to the car, feeling like I had at least gotten to experience it all (even if it was compacted into a short amount of time). I also had to save up some energy to see my little sister go to her first prom. If I had stayed any longer at the Masters, I most likely would have been done for the day energy-wise. It's all about balance for me. Deciding what I can do each day and how much energy to save up for certain things. I'm so glad I was able to see Langdon before prom. I was the proudest big sister. She looked so beautiful and grown up. 

I'm pretty sure she looks older than me here! I was sweaty and hot from the long day and she looked like a model! Speaking of my sister, she has been a champ through all of this. She has watched me go through 13 surgeries, a ton of hospital stays, and many days where I can't get out of bed. It definitely affects the whole family and she often gets less attention during those times, but she takes such good care of me. She never complains and is so helpful. I am so happy for her to experience her first prom tonight....and I'll be waiting up to get the call she made it home safely :) All in all, I am thankful for a pain-free day spent with my wonderful fiancé and family. 

24 days to go...

There are 24 days until THE BIG DAY! This past weekend was supposed to be my bachelorette weekend in Sea Island, Georgia hosted by one of my best friends, Morgan. Unfortunately, after being in the hospital for 6 days and still not feeling any better, we had to rearrange the plan. I didn't want my health to get in the way of one more thing, so we continued with the date of last weekend since it worked for most everyone, but we stayed in Greenville. The great thing is, we stayed at a hotel and didn't even feel like we were here! I spent 3 days with my amazing cousins and friends who went above and beyond to make me feel special. I am beyond blessed with family and friends who love me. My cousins picked me up in their car decked out in crazy bachelorette stickers, flags, and such. My artistic friend Sarah decorated the hotel suite with the most incredible touches, and She, Ashley, and Danielle had everything planned for the weekend. My sister and future sister-in-laws joined us too!

They were also great about pacing the weekend so I could still take naps and rest in between activities. By Sunday night I was tired and the pain was still so bad (had never gone away). I decided I would use Monday to pray about what the next step would be. I wasn't getting any relief from the medicine for nerve damage, so I didn't think that is what it was. Monday morning one of my Bible study leaders suggested we call Dr. Young, a wonderful surgeon here in town. My first thought was, ok, but it will take weeks to get in to see him. Later that afternoon, my mom called Dr. Russell, who did surgery on my hernia back in 2005 to see if it was possible that the hernia has broken through the surgical clips. He is a dear friend and goes to church with us and always looks after me. He didn't think it was likely that the hernia was back, but he said he would call his friend Dr. Young to see if he could work me in. As God had planned it, it was the same Dr. Young my leader had suggested and he saw me immediately. He was so thorough and did some more tests and exams. His findings were that the cartilage/ligaments around my left lung were torn and that was causing the severe pain. It is extremely unlikely that this would happen in a "normal body", but with EDS, it is not as uncommon. My connective tissue is already so weak, that it doesn't take much to tear. The reason it has been so painful for so long is that every time I breathe (which is a lot haha) it would expand the torn tissue even more. There is obviously no way to "rest" the lungs, so I just need to take it easy and not put too much stress on my body. He also prescribed two meds to help reduce inflammation and calm everything down. Once it gets closer to "the big day" I will go get steroid injections in my rib cage area to really numb the pain so I can enjoy the wedding and honey moon :) I am so thankful for God's plan today in putting Dr. Young in my path. After we finished the appointment, he sat down, held my hand and PRAYED FOR ME! He prayed for my health and my marriage, that God would bless them both. How awesome is that?!?! God is good! The best news of all....it is the first time in almost 4 months that I have felt a hint of relief from the pain! The meds are already working :) :) :)

Thank you all for your continued prayers! Keep them coming. I am praying this pain starts to cease sooner than later. Also please keep my friends Lindsey and Tricia in your prayers as they are both facing health issues as well. XOXO

The Zebra

Did you know? The zebra is the "mascot" for Ehlers-Danlos Syndrome. In the medial world, a zebra is a rare condition or disease. Doctors are prone to diagnose and treat the obvious issues, which leaves many patients with rare conditions being misdiagnosed.

Because EDS is a connective tissue disease, it affects your entire body from head to toe. Think about all of the muscles and joints you have. It's a lot! Some, you don't even think about...gall bladder, stomach, esophagus, etc.

The past few months, I have had a lot of left flank pain in my back that sometimes wraps around my side to my left abdomen. With EDS I have a high tolerance for pain, so I am able to ignore things for quite a while. The pain came on suddenly and out of nowhere so I tried to monitor it and see if there were things that made it better or worse. After several weeks the pain started to get worse. After I would eat or drink I would get this awful stabbing pain in the back of my rib cage. It felt like I was being punched in the ribs from the inside out. I went to the ER late one night just to make sure there wasn't anything terribly wrong. The did a CT scan looking for kidney stones and then gave me some pain medicine and sent me on my way. Unfortunately this happened two or three more times. Same pain. Same protocol. No one was willing to dig deeper to actually find out where this pain was coming from. Sure, we ruled out kidney stones, but that is only one of a lot of possibilities. As the pain started to get worse again, I decided it was time to go to the Mayo Clinic. I am getting married in a month and a half and I can't be doubled over walking down the aisle!

Mom and I flew to Mayo the beginning of March. We call it our Medical Mecca. It is simply amazing there. Here is a picture from the plane. That is snow covering Minnesota. Our first stop was OBGYN since they had done my most recent surgery the end of November. The doctor's suggestion was to see gastroenterology and urology during our visit. Because the pain was so much worse after eating and drinking, I decided to start with GI. We spend the entire week doing CT scans, ultrasounds, MRI, a colonoscopy, and an endoscopy. It is safe to say my GI tract has been THOROUGHLY checked out :) The good news is, the colonoscopy was perfectly clear with no explanation of the pain. The endoscopy did show inflammation of the esophagus and stomach (which made sense because the pain was in that area) No matter what I ate or drank, as soon as my stomach would expand even a little bit, the pain would get worse. So we had one piece of the puzzle. By Friday it was time to go home. I had my first bridal shower that night and I really wanted to come back home for it and just be normal! (Plus it was a couple's shower and David was super excited about opening presents) I figured I would pick up where we left off at Mayo at some point in time. That time came sooner than I had hoped. The weekend brought even more pain and all I did was rest, eat small meals, and rest more! By Tuesday I was having such severe pain that David had to drive me and Kappy to my parents' house to spend the night. (who doesn't want their mama when they feel that sick?!) I stayed up all night sweating, rolling around in a ball and rocking back and forth on all fours. That bought me a ticket to the ER the next morning. Wednesday morning I ended up being admitted to the hospital where I would get around the clock care and more testing to figure this out.

So that's where I am now! Sadly, I had to miss my church retreat this weekend while I am stuck in this hospital room. I know God has a purpose for me in here and I try to glorify his name to whomever I can. They are ruling out more major issues with my kidneys and urinary tract, but the Ehlers-Danlos has just really taken a toll on my poor insides! I have had a lot of quiet time to myself and have gotten in some great prayer time.
Please pray for me and pray that the doctors find this zebra causing the pain. Also please pray for two of my friends Tricia and Lindsey. They are both going through health scares and have little ones and husbands who want them home so badly! I know God is putting me through these trials for a reason, and I will be a better person for it. As long as I keep my attitude positive,  with God's help, I can do this!

Love you all!
Riley

Long Overdue Update

This is her favorite place to sleep...on my face! 

God is Good! All the time!

I realized I have totally neglected my blog lately. There has just been so much going on in my life! For one thing, I got a puppy. And she's absolutely incredible. After my last surgery in November I was really feeling down and thought maybe it was the right time to get a puppy! So I surprised David and got Kappy, a King Charles Cavalier Spaniel. She was such a healer. She would lay in bed with me all day long while I was recovering and all she wanted to do was get as close to me as possible. It definitely helped the healing process. She goes to work with me everyday and brings a smile to so many customer's faces. She is so happy to see everyone and is such a love bug. She thinks she is a baby and likes to be held over your shoulder or cradled on her back like an infant (while rubbing her belly of course)

Christmas

 The next thing that happened was right after Christmas... and it was the BEST DAY EVER! David proposed!!! We went to the Biltmore House and his sister Elizabeth was hiding in the bushes taking pictures of the whole thing. 

 

I feel incredibly blessed and wanted to share all that has happened since the surgery the end of November. God is so good! David and I are getting married May 3rd and we are SO excited.  I will keep the updates coming this time :)

xoxo

Lucky Number 13

Today was the day! Surgery number 13....lucky number 13.

Mom and I arrived in Mankato, MN Wednesday to go to the Mayo Clinic. Rochester is where the main hospital is (where we were in January), but Mankato has the specialty women's hospital. It is a teeny tiny city with not much of anything, but it is very quaint. All of the people we've asked for directions will say something is "way across town" and "really far away". Each time we have discovered that simply means 2-3 miles tops haha.
We left the hotel at 6 this morning and checked into the hospital. My doctor, casually known as "Doc" came in this morning and explained everything one more time and let me ask more questions to make me feel at ease. The greatest thing is I felt a great sense of peace the entire time before going in. I was not anxious and I knew God was giving me a peace that passes all understanding. These are my poor arms. I have awesome veins, but they don't seem to cooperate on surgery days. So I ended up getting poked and prodded a little too much. I don't know which took longer....getting all of my hair in the hair net or getting the IV in :)

The surgery started around 7:30 AM and lasted a couple of hours. I had two amazing head surgeons, lots of other doctors, AND the Davinci robot. The robot helped a ton. It was able to get in small places that a regular scope couldn't see or get to. Just as I thought (and felt) most of the endometriosis was growing all over my colon. It felt like a boa constrictor had wrapped itself around my colon and wouldn't let go. They also removed it from my uterus and ovaries. The good news is that everything looked structurally good. (Just covered in lesions haha) When I woke up, Doc came in and gave me a run down of everything they did....he also showed me a bunch of pictures he took. LOVE seeing those! This is my amazing doctor.... like a grandfather I just want to hug all the time.

Tonight I got up and walked around  a little bit. I am on the maternity hall so of course I took a walk straight to the baby nursery. There are the cutest, tiniest babies in there. 

So as for outcomes....They got ALL of the endometriosis that was in there. I should start feeling a lot better once my body starts to heal. It will eventually grow back, but this bought me a lot of time. I cannot thank everyone enough for all of the prayers, messages, and phone calls. You have no idea how much it means to me. It helps me to keep a positive attitude and to know that I have some awesome prayer warriors. God has truly blessed me through all of these hard times. I couldn't do any of this without my mom. She said when she walked in the recovery room the doctor said, "Look who I found" and I said "My best friend!!!" My mom just melted. We don't know yet when they will discharge me from the hospital or when we will come home, but I will keep you posted! Though I don't always agree with or understand God's plans for me I try to remind myself of Proverbs 3:5 

Trust in the Lord with all your heart and lean not on your own understanding

Wildernesses

In bible study, we are learning about the wildernesses that God put people through in the Bible. The trials and hardships they went through, and what came out of them. First off what is a wilderness? Something big or small that you are going through in life whether it be a relationship issue, problems within your family, searching for a job, illness, death. It can be anything. Sometimes we think surely it is Satan putting us through these hard times....but it's not. It is God. But why does He do that to us? To protect us (from something else worse), To test us (to see if we will obey Him), To show us miracles (to reveal Himself) and to show us that we need Him. If we go about life on a level field all the time, how often will we look to Him for comfort or advice? We often look to Him in thanks for the great things and in anguish for the bad or hard things. In our book it says "sometimes God allows hardships to graciously show us we desperately need Him"

For the past eight years, my main wilderness has been my health issues. But I would have never leaned on God so much and grown so close to him had I not gone through all that I have. I have met the most amazing people, had the greatest experiences, all while going through the toughest times. I have relied on God to help me keep a positive attitude and to help me minister to others. It was not always that way. In the beginning, I was angry at God. Why me? Why am I missing out on all of these fun college outings, spring breaks, vacations, to have surgery? Why are my friends all getting jobs and moving to fun places while I am scared to go too far from home because I am so sick. I often did not want to go to church with my family, and I most certainly did not want to open my Bible or spend time with God.  Over time, lots of prayer, and an amazing Bible Study group, I caved. I learned to be still and listen to His word, to sit down and read my Bible, and to really develop a relationship with Him. It is amazing what God can and will do when you let him. He opened my eyes and softened my heart.

I now see every "wilderness" as a gift from God. I can't wait to see the good that will come of it. I know He has a plan, and if we "camp out" long enough through the hard times, we will see it. He wants to reveal himself to us in a way that will change our life forever. And that...He has done for me. I pray that He helps you through whatever wilderness you are going through and that you see His greatness in the end.

A week from today mom and I leave for the Mayo Clinic in MN for surgery #13. They will remove the endometriosis that is growing everywhere and hopefully this will alleviate a lot of the pain and discomfort I have had. Just another part of the journey for me, and I can't wait to see the wonderful things God has in store for me along the way.

"You will seek me and find me when you seek me with all your heart" Jeremiah 29:13

A week of ups and downs!

It seems like a week doesn't go by that isn't "uneventful". On Monday night, I had some shrimp fried rice from a restaurant I frequent almost weekly. By midnight, I was violently sick until the next morning. It was a long and miserable night and I was feeling like a small child who just wanted their mommy. On Tuesday, I rested most of the morning until about lunchtime. I pulled it together and went to my store, Two Sisters Embroidery, because there was so much to be done. I am not very good at being sick when there are things to do! By late afternoon I was curled up in the fetal position underneath a table. I was in SO much pain! I called David (wonderful boyfriend) and he drove me to MD360, our emergency clinic. When I got there they said I was too sick and needed to go to the ER. Mom took over and we headed to the hospital. I spent the night there getting lots of IV fluids and pain meds. After a lot of testing and scans, it looks like some bad food poisoning from shrimp which greatly aggravated the endometriosis that is on/around my colon. (hence the pain!) The next few days I was very weak and did not want to eat or do much of anything. The problem was, the grand opening of our new store was on Friday afternoon. I prayed God would help me rally and heal my body. In Jeremiah 31:25 He says "I will refresh the weary and satisfy the faint." Indeed he did. By Friday, I was able to help get the store "party-ready" and attend our grand opening. Can you see our excitement in the picture above? We are cutting the ribbon for the Greenville Chamber of Commerce at our new store! We are so proud.
I could not believe the love and support of everyone who came to the party. It was such a success and I give God all of the glory for getting me to where I am today. I never imagined through all of the sickness, I would own my own store. I could not do it without my mom, though. She is there everyday working along side me, and covering things when I am too sick to work. Our staff is incredible and I have met the most amazing people through the shop. To top off the week, the Haskell family got a new puppy on Saturday. Sweet Reese has brought so much joy to the household!

Though the week started off on a bad note, it certainly ended well. "Give thanks in all circumstances, for this is God's will for you in Christ Jesus" 1 Thessalonians 5:18 My next surgery is scheduled for November 8th at the Mayo Clinic in Minnesota. They will remove all of the endometriosis and hopefully get me feeling good again!