Life, She is a Changing ... and I am Changing with Her

The last few years have brought tremendous changes in my life. I went from travelling every week for work to finding my dream job locally. I was well respected in my field and loved my work. My family is wonderful and likewise was doing very well. I found a very comfortable niche. In the midst all of this life goodness, I continued to get sicker. I went from playing pick-up soccer to roller skating to walking to doing not much at all because my legs began to fail me. I have been gaining weight despite dieting, experiencing a lot of pain, migraines, breathing problems, so many things. Getting assistance from doctors was difficult for a long time. When you are overweight, that is all they see. As my body continued to spiral downwards, finding compassionate doctors who were willing to look beyond the obvious and really dig in with me was very difficult and there were a lot of humiliations along the way. Finally, when my thyroid died in 2015 I was able to get doctors to take me seriously. It was the beginning of putting together a crackerjack team of doctors who finally figured out what was wrong with me. For those of you who do not know me, I have been experiencing increasing debilitation across most of my body's systems for almost 30 years. It wasn't until I found a good immunologist, neurologist, and family doctor that I was finally diagnosed with the conditions that have plagued me for years. I have over 12 conditions diagnosed so far. 5 or maybe 6 of them are rare conditions. It is completely overwhelming. Despite being overwhelmed with my diagnoses and the things I need to do in order to feel better (and the reality that I can only feel so much better and it will likely continue to get worse), I try to stay focused on life. I have a great family, many things to do, etc. But, I have to admit, it has been difficult in the face of increasing illness. This year I finally became sick enough that I could no longer work. It was very demoralizing to reach that conclusion and to face the scary future. Being disabled means different things to different people. For me, it has stripped away all of the things I used to self-identify myself - being super smart, cute, active, successful. I have had to dig deep to find what still makes me unique and different and special and focus on bringing those things into the light. Without that, I would probably have succumbed to despair. I have many ideas of things I would like to do - from advocating for animals to writing books, but I am currently grounded by fatigue. I hope to one day be able to fly up high with my ideas and put them into action. In the meantime, I am learning about my conditions, advocating for myself, and trying to develop the discipline to take care of all of my conditions properly. I hate discipline. I hate even the idea of discipline. But discipline is necessary. It is a careful balancing act. I am hoping to blog more. I would like to improve awareness of my rare conditions. I would like to connect with others who have similar stories. I would like to change the conditions that make diagnosis of rare illnesses so difficult. Early intervention is critical. Waiting 30 years is too long. I hope you all are doing well in your own lives, and if you are not - I hope that you make great strides this year. All of our challenges are different. Namaste.