January 5, 2016
We saw the respirologist yesterday. I could tell he really wanted to be able to give me some answers but he just didn’t have any. The perspective from his speciality is that I’m healthy. He suggested I try the Mayo clinic, out of pocket of course. He also suggested I look into Pompe disease, Chronic Fatigue Syndrome, Fibromyalgia and another neuro muscular disease I can’t remember right now. We had a bit of back and forth discussion about CFS and Fibro, since from my research it doesn’t seem to really fit with my symptoms, and he admitted it was just a theory, and reiterated how complicated it is when Addison’s Disease is factored in. I asked about mental illness, since at this point I’m so lost I don’t even know what to think. He gave it as much weight as each other illness he suggested. I thanked him for his honesty and compassion, since he was one of the few doctors that seemed to understand that what I wat more than anything is an answer, and then we were on our way.
I still do have some options. I haven’t seen a cardiologist. I still have the scopes coming up. My Addison’s and Thyroid aren’t well controlled yet. My uncle has offered to help as well. I just can only put so much physical and emotional energy into it at a time. Throughout all of this I still have to live, raise a child and maintain my marriage. I need to make room for joy in my life, and if I’m too consumed with my undiagnosed illness and its symptoms I don’t have any room for happiness.
I’m still grieving my sister as well. Sometimes I still can’t believe she’s truly gone, since I regularly would go for months without hearing from her. Every now and again I start to wonder if she has a warm coat or if she ate enough and then I remember she’s gone. Still when the phone rings I wonder if it’s her for a split second.
Somehow I keep finding things in my house I can do without. I’ve even started purging the fridge and pantry. I’m enjoying the pieces I’ve made room for, displaying them on the wall or a shelf. Cleaning is easier too without having to find spaces for junk.