Today is going to be a very open and honest post. I thought we were at the point of managing a lifelong chronic illness. We were in a stable routine with EDS. My daughter has a different life; her body needs the right medications to keep things in balance. You change one of these, even a little too much, and it throws the whole body off.
I’m angry and tired today. I’ve been talking with God about how I process the anger I feel. Anger against our health care system with all its red tape. Anger that insurance companies make decisions for our children’s healthcare which are not what is best for them. Anger that it should be our doctor along with input from the patient who make these decisions.
I’m too tired to write all the details today. My daughter has gone backwards because of our healthcare system. It makes no sense and for those of you who want to come to defend the health insurance companies’ interests, I can assure you it is not all about money. When my daughter improves and I get some much-needed rest, I will write more in the hopes that it might help you, should you happen to find yourself in this same unfortunate place. In the meantime, I wanted to share with you a device which we have been using A LOT over these days and throughout the nights.
We love this electric massage device to help ease body pain which has now escalated due to medication changes. Along with warm Epsom salt baths, this has helped our daughter to cope especially through the sleepless nights when the pain and restlessness are at their peak. As a side note, my daughter used this on me after my recent ankle injury which resulted in widespread pain. It seems to give temporary, effective relief. My daughter also uses it during stable times to help ease tight muscles which come along with EDS.
I hope this gives you one more tool in your toolbox, EDS Mama. Know that I pray for you and your children and, boy, can I use your prayers today as well. As always, it comforts me that there are others out there like us who understand.