I have added a link to this excellent blog to my sidebar. Check out SjogrensLife, a blog written by Janet Church. You'll understand why after reading this from her About tab:
I am a seasoned technology marketing executive and started my career as the 301st employee of Microsoft. I then went on to create Janet Church & Associates, Inc., a multimillion dollar technology marketing firm. I was CEO and President of this company for 18 years until I became too tired and ill to run it effectively. At the time, I just thought I was exhausted from being in the high-paced world of technology for 21 years. However, over the next five years I became increasingly ill and could not get a diagnosis. Eventually, my body began to shut-down and I was hospitalized for 3 weeks as doctors in almost every discipline ran tests. They titled this an acute “cataclysmic event”. I eventually was stabilized and then released with no clear diagnosis. I was not accurately diagnosed until 7 months later when a visiting Mayo Clinic diagnostician pinpointed that the only physician I had NOT seen was a rheumatologist. After additional lab work with the focus of Rheumatologic diseases, I was diagnosed with Sjögrens Syndrome. This disease drastically effects how I feel every day — the joint pain, the severe dry eyes and mouth, organ problems such as reduced kidney function, and exhaustion. I take several serious drugs (pharmaceuticals) to suppress my immune system. Without drug therapy, I can not function. I am not an unusual Sjögrens patient.
My natural personality is to face challenges head-on, gathering information and performing to the best of my ability. However, the “best of my abilities” has been greatly compromised. The experience of grieving my “old self” and defining my “new self” has been a challenge over the past decade, but I believe I have a system that helps me live the best life possible. In fact, I live a fantastic life in Sonoma, CA. My life is filled with loving friends, a wonderful relationship, interesting work, and all the riches nature can provide.
I am currently the Chair-elect of the Board of Directors for the National Sjögrens Foundation. I learn so much being part of this organization, that I created this site to share some of what I learn, and tips I discover, with other patients and family members supporting their loved ones.In my opinion Ms. Church could be the poster child for the Invisible Illness concept, yes?
Her latest blog post from January 9 2016 is a real goodie:
I am so relieved that it is 2017! I am happy to say that I am feeling my usual self today. But it was hard work getting back to emotional and physical status quo — because the last four months of 2016 was absolute shit!
This blog post is about how the emotional stress of a major life event collided with my Sjögrens, caused a major Autoimmune Disease relapse, and what tools I used to pull myself back up to my usual state of normal. I also, now, have a game plan for the next major life event!
It has been exactly four months since my Father’s funeral. He was a diabetic on dialysis and we had watched his health decline rapidly during the year. When he entered the hospital for (another) infection, it was not a total surprise that he decided to reject dialysis. He simply said, “I’m done”. And we believed him. We supported his wishes and 10 days later he was gone. We had an amazing family experience (Dad, Mom, me and my brother) as we stood vigil at his bedside sharing stories and love. It was a very good death, and I am thankful for this.
Major life stresses, like death, happen. No one can prepare you for how you might react, so you need to trust that you know yourself best (and you know what will help you most). Managing my Sjögrens while going through all of this was a challenge, and ultimately not wholly successful, but I was able to keep myself together to get the critical things done. I wanted to give myself the best chance of being present for my Dad, my Mom and brother, and to be able to be an active participant in the work that happens after death (the funeral, the house, the family grief, the mourning friends). Continue reading here.