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