As a daughter of a Canadian mother, I grew up enjoying a daily ritual of afternoon tea. To this day, even though my mother has passed, I still almost every day take time out in the afternoon to sit down and savor a cup of relaxation. Today, I excitedly jumped into this tradition with complete enthusiasm, plunked down on my comfy chair and pulled my feet up under me, telling myself I had full permission to soak in this time for me and enjoy God’s goodness of provision. Let me explain why…
I love when my daughter and I leave a doctor appointment knowing we have another person on our team. Today was one of those days even though we did not walk out with a magic prescription to make everything all better. Recently, we have been in transition with several doctors. (My calendar looks very, very full with appointments.) Just when we thought we were all settled into our team of doctors, God has us on the move again! Does this mean we are doctor hopping? Absolutely not! Quite the contrary. Just like our pain doctor verbalized today, we need to feel like the doctors we work with are doing their best to help us, to understand us, and to live out the balance between improving quality of life and preventing more harm.
This balance is a fine line with EDS. Without sounding hopeless, this is a genetic condition without clear cut treatment options or easy fixes. This same pain doctor tells us he now has four EDS patients who are all very similar. Just that comment alone gives us some validation and comfort. He wishes he could tell us to take this or do that and life would be easier and less painful. Truth is, we are in the group of EDS patients where not much relief has been found when it comes to pain. There are only so many options. Because of the sensitive gastrointestinal tract that accompanies EDS, some medications are off the table. It is hard to hear that if only my daughter also had an autoimmune connective tissue disease or rheumatoid arthritis, she might be able to get more treatment options and some possible relief.
We understand that at least for now, we do not have many options left and that may mean accepting this is the best we are going to get. The unfair part of EDS is the constant re-evaluation of goals and dreams to force them to line up with the reality of what the body will allow. Does this mean all hope is lost? Not for one minute! God CAN change this all in a blink of an eye; He can heal simply because He chooses to and it is EASY for Him!! Until that happens to the physical body (God has healed in spiritual and mental ways), it comforts a Mama to know we can look forward to certain doctor appointments because there are those who are working WITH us to help us have the best life possible, who openly admit they do not have all the answers. And when that happens, there is no judgement in the patient room. As an EDS Mama, we don’t get to experience this very often. Close your eyes and breathe in what that feels like for a moment. Mmmmmm. I just have to thank God for sending us here to this doctor, for this time to actually enjoy.