A Work in Progress

January 19, 2016

It’s funny how sometimes a good thing can make you feel sad. I finally got the nerve to go visit work today. I forgot how funny (and also offensive) they can be. It felt good to laugh, and be welcomed back right away, taking my place around the table as if I’d never left. It was nice to hear about what was going on, and get the updates on everything. When asked about my health all I could really say is that I have good days and bad days, and fade as the day goes on. One of the ladies commented that from what she saw I was doing so much better since last time I was there I was using a walker and today I just had the cane. I did say that I pretty much just don’t leave the house when I need the wheelchair, but I didn’t really dwell on it. People like seeing improvement, and who am I to take that away? Her opinion really has no effect on my progress anyway, and if I chose to get annoyed by her oversimplification, I’m just wasting my energy. Besides, humans are optimistic by nature, it’s a survival skill. I talked for a bit with my boss and gave him a real update, if you can even call it that since I really have no new information. It was wonderful to hear though, that they’ll make something work for me when I can get back, even if it has to be an office job. I told him I was thinking about going back to school if I have to go the office route, since my technical diploma may not allow me a challenging enough office job. All in all it was a good visit, both personally and professionally, but I guess it brought the sense of loss further up to the surface.

I saw the endocrinologist last week. He changed dosages on 4 out of 5 of my medications. He said I needed to get a follow-up with the neurologist, even when I told him about how I tried already. I’ll book an appointment with my regular doctor soon to see what’s next. After 23 years of being a vegetarian I’ve started eating chicken and fish. I consider that a testimony to how desperately I want to get better. At this point I will try anything.

The purging has made it’s way to the junk drawer and the tool cabinet. I have empty cabinets in the kitchen, 2 empty dressers in the basement and empty shelves in both my son’s closet and my bathroom. I’m getting quotes to fix some issues in the basement and got asked if we just moved in. We’ve been here for 9 years.


A New Year, An Old Problem

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.