My story starts many years ago, but I was diagnosed with Primary Sjögren's syndrome at the age of forty-two. I also have Ehlers-Danlos (classical type) as do my daughters. Ehlers-Danos syndrome (EDS) is an inherited connective tissue disorder. Connective tissue is a mixture of proteins and substances that provide strength and elasticity to the structure of your body. When the connective tissue is defective, as in EDS, it becomes difficult to do every day activities.
It all started when I was young. I had a lot of health and pain issues. I had frequent joint pain in elementary school that was brushed off as "growing pains". I remember the knee and massive leg pain. I had kidney reflux, which meant frequent urinary tract infections. At eleven years old, I was diagnosed with scoliosis and close to needing a brace at fourteen years old. I also had a lot of stomach issues which can be related to connective tissue disorders. I also had an injury from when I fell on the ice at…
"Each of us must confront our own fears, must come face to face with them. How we handle our fears will determine where we go for the rest of our lives. To experience adventure or to be limited by the fears of it." ~ Judy Blume
Today is the day! I leave this afternoon for a weekend retreat at Kripalu with one of my dearest friends. It's called the Manifestation Workshop: On Being Human (led by Jennifer Pastiloff). Doesn't that just sound like the perfect retreat?
I have been looking forward to this experience for almost a year and a half now. I've NEVER done anything like this. Actually, the reason I didn't go last year was because I was too afraid my body couldn't physically handle it; not just the yoga classes, but all that comes with this type of thing.
Does that mean my health is better this year? No, not really. My doctor has me on a course of prednisone, which is helping, but not quite as much as I had hoped. At this point though, I'm going for…
For those of you who follow my blog fairly regularly, you may remember a post I wrote about two weeks ago called Accepting Chronic Illness. It was a very personal and honest take on my current inability to fully accept having Sjögren's syndrome and the limitations that come with such a diagnosis. If you are interested, you can read the essay by clicking HERE.
A while back, I also started following a website called The Mighty. It is a website dedicated to real life stories of people living with disabilities, disease, and mental illness. The most recent article that was published caught my attention and even more specifically, a particular quote:
"Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to 'get better.'" - Joan Elizabeth.
Light bulb moment. This is what I have been doing...
Waiting to get better. And working to BE better, no matter what the obstacles are.
If you have Sjögren's syndrome, or know somebody who does, this is a must read.
I see an oral medicine doctor, Dr. Athena Papas, at Tufts University School of Dental Medicine in Boston. She has been an invaluable part of my medical team in treating and managing the oral complications I have from Sjögren's syndrome, the most important of which has been removing salivary stones from my glands in a non-invasive manner. Since I started seeing her, I have not had one gland infection or permanent blockage.
A while back, she mentioned to me that she is heading up a study to test a potential new Sjögren's medication. At my visit this week, she gave me the eighteen page document she gives to prospective new participants. I am not going to rewrite the entire document, but I am going to try and present to you the highlights of the document because my understanding is the investigating group is still looking for study volunteers. According to Dr. Papas, I do not qualify for the study, b…
For those who know me, that is not a surprising statement to hear. After all, I have a chronic autoimmune illness; one where fatigue is one of the most prevalent symptoms. Tiredness is as much a part of my daily life as food and sleep. Most of the time, it's a given.
But lately, my tiredness is more than physical. It's mental, emotional, and spiritual. It's the type of tiredness that makes me want to stop fighting the daily battle of living with Sjögren's, and the host of other medical issues, that have plagued me over the years.
Is it tiredness? Or is it depression? Or grief?
The label isn't important to me. Actually right now, there's not much that is important to me because all I want to do is sleep. Or veg out in front of the TV for days at a time. I get fleeting moments where I see a glimmer of my usual self - the self that enjoys the living hell out of life on a daily basis because she knows that life is short. And precious.