Be Strong

Rough Times | Papers, Rough Times | Elements, and Rough Times | Journal Cards by Sahlin Studio
Shot Through The Heart {Dressed Down} by Fiddle Dee Dee Designs

Sketch technique instructions here courtesy of Farrah Jobling

Years ago, I tried not to worry when the kids had some knee pain with soccer. I took them in to have it looked at and asked the doctors to look for my same loose joints, but they reassured me you didn’t seem to have my problem. AJ improved with orthotics in his shoes, but that made sense with his odd arches. When AJ wrestled, he mentioned the kids couldn’t get over his elastic skin. I still didn’t think about it too hard. 11/2015 My PT asked if anyone had ever mentioned Ehlers-Danlos Syndrome to me, but they had not. I looked it up and suddenly, my history, AJ’s stretchy skin, the knee pain and joint aches, Syd’s stomach etc. made more sense. I mentioned this at your annual visit and Dr. Waggoner did some scoring which pointed to you both also having hypermobility. We saw cardiology. We got on the waiting list for genetics. We waited and waited. Sydney’s gallbladder stopped working and we got it removed. Summer 2016 you both had a lot of dizziness. AJ seemed to get better quicker with pumping the water. Sydney did not. Sydney got a lot of palpitations and anxiety. Her GI was worse. Her joints were worse. We went to IA City for rheumatology - nothing. Things spiraled out of control. She was hospitalized. We saw KU with some things to try in late December. She got back to school in January after missing all of Nov and Dec. She started seeing Dr. Lewis at DMU in January - amazing doctor. Still unable to get into genetics for a diagnosis, Dr. Waggoner called for a consult over the phone in January. Genetics called this a “slam dunk” diagnosis, encouraged him to make it and treat her. She started on Mestinon, which so far is helping the GI problems to some degree!! Kelly explained to Sydney that there are so many things we can try to relieve symptoms, and it will get better controlled. We now have an appointment with genetics in a few months. She’s searching about service dogs and feeling more optimistic