12/07/2025
I had my first virtual follow-up appointment last week. Dr. Fowlkes thinks I’m doing great. I’m up to 3000-5000 steps a day. I’m able to eat about 12 foods now which is wonderful. I’ve tried other ones, but they were not a success yet. I’m on a 10-15lb weightlifting restriction for another 4 weeks. I still struggle with exhaustion and nausea but not as bad as it was. Pain is slowly decreasing. Overall, much to be thankful for.
Something else has been on my mind to share with you. I’ve never officially posted this before, but I think if I do it will help you to understand better how to talk to those with lifelong illness.
I was born with a genetic condition called hypermobile Ehlers Danlos (hEDS). I remember living in pain already as a child, and had my first joint surgery at 17. Simply put, the connective tissue throughout my body is faulty…its too stretchy. Having this condition affects every organ, every joint, every blood vessel, our skin and even nerves which are surrounded with connective tissue which is why I had those Tarlov Cysts on the nerves in my sacrum several years ago. This genetic defect can cause other conditions like, POTS, MCAS, compressions like MALS & SMAS, gastrointestinal issues like Gastroparesis and food intolerances, multiple joint issues and subluxations, organ prolapses (all of the above issues I have) and many more issues including extreme tiredness. Having EDS is a lifelong struggle.
While I am so thankful to be free from this abdominal compression (SMAS), my body still has and will have many ongoing struggles. For example, having surgery and being in the hospital 10 days has exasperated my POTS, leading to a struggle to regulate my blood pressure. Two nights ago, after feeling weak and not well for several hours, I thought of checking my bp. It was averaging about 85/48, so I spent the next 1 ½ hours trying to stabilize it so we could go to bed. I could have taken an “emergency” medication I have to make it go up but with mast cell issues i often react to medications. I could have gone in for fluids but who wants tk at 10:00 pm, so I opted to eat Celtic salt, drink coconut water, and push fluids. Eventually it was stable in the low 90’s over mid 50’s, and I started feeling better.
I am sharing this with you to give you a small glimpse of life with EDS and its effects which includes daily ongoing pain and other issues. I still have a hip with a split open capsule and torn labrum. I still have ribs that are constantly going out and need to be put back in. I still have reactions due to Mast Cell issues. I still have an unsteady neck that I’m trying to hold off treating. I still have a torn cartilage in my knee that keeps getting caught in the joint and then I can’t walk until it moves. The second reason is to help you understand what others with chronic illness could be dealing with in private. We need to be sensitive to what we say to others with chronic illness. Be encouraging, be supportive, be a listener and ask in what ways you can pray or help rather than focusing on whether they can be cured or not.
For myself, it’s not helpful to say things like, “I hope you will be pain free now” or “hopefully this is your last surgery, etc.” While I hope for the same things, in God’s providence it doesn’t seem realistic in my lifetime. I’ve had to work through mourning the life that I thought I wanted, and my outlook on life is now very different. I’ve learned to be thankful for the good hours, thankful for the things that I still can do, thankful that surgeries are even possible, thankful that God continues to carry me through each day, and that He gives me the courage and strength to press on. Focusing on these things is what gives me joy, and in my moments of discouragement, being reminded of the care of my heavenly Father brings the greatest comfort. I am so thankful for many of you who are constantly pointing me to Him; thank you for being with me on this lifelong journey.
