So many of my posts are about napping. As another musician, I like the concept of “rests” in both contexts 🙂


In music, there are many kinds of rest. There are small rests and larger rests. Some of the larger rests allow the idea to be further developed or other voices to be heard. For this reason, I don’t want to approach another large topic like yesterday. I want to wait until it feels right. Over the past 24 hours, I have been working on the next one and I was really excited about the topic. It was even really appropriate for what happened to me. I have yet to see this topic addressed but it doesn’t feel right yet. I am going to allow development of the previous idea and transformation. Soon…soon.

As patients with chronic illness, sometimes we find that rest is important for other reasons. Sometimes we take it so that we can just do something else. There are those things that we have in our bag that…

View original post 90 more words

Sometimes it isn’t you but them…really.

Thanks so much for sharing your thoughts, even though it’s hard.


This is one that has always been very hard for me. I have seen and identified the issue multiple times but it is hard for me to really get it. In my mind, the professional should be able to know when they are off. They should be able to identify when they have the wrong perspective. I have been able to do that in my work life, they should too. The thing is that this doesn’t happen and we are really likely to be the ones hurt. We are even more vulnerable as rare illness patients. This can cause lasting damage from misdiagnoses and such. I really believe that this is an underestimated problem. I can think of more than 5 times that this has happened to me…I know it has happened rather than assumed.

In our groups, we often hear people rant that the doctor is an idiot and…

View original post 1,311 more words

It takes two

Thanks for sharing!


So often I focus on what I need to do for the big appointment. After documenting and trying everything I can think of that I can do, I carefully prepare myself to have a great appointment. I have put a shocking amount of time into contemplating the pros and cons of dressing and grooming as I do or to look how I feel. Those of us with chronic illness (in particular those with rare illnesses) are well aware of the pros and cons…especially women. I have also spend time carefully wording what I am going to say to make sure that I don’t say anything that will be misunderstood. That has failed plenty. When I first started getting sick, the doctors that I went to decided to “play with me.” They even said so. Any word I said was twisted endlessly. This had a horrible impact on me and left…

View original post 524 more words

Sleep, the Goldilocks and the three bears of Cushing’s Disease and after

Read the whole article at

Insomnia was one of the first things that troubled me enough to try to get help for with Cushing’s Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelor’s degree while working at Starbucks, I barely slept. Because I wasn’t sleeping, I decided to just keep busy….