One thing that I repeatedly hammer home to my chemical dependency group is the disease model of addiction. Chemical dependency is a progressive, chronic, treatable, and fatal disease, just like diabetes, thyroid disease, or heart disease.
I don't often think about Sjogren's in that light. No one really wants to confront their own mortality, let alone the possibility that a condition you have could potentially hasten it. My father died from complications stemming from it. It is a treatable, but not curable, disease.
I don't often think about the fact that my dry eyes will get worse. That I might lose my teeth due to the dry mouth. That my sinus infections might get more frequent and severe. That I am more susceptible to pneumonia. Neuropathy. Lymphoma.
I never know what kind of day I am going to wake up to. Most mornings, I move like an old lady getting out of bed. The early morning stiffness most days lessens and I can function. Then there are days when my body just aches. When walking hurts. When sitting hurts. When the fatigue is so mind numbing that even sleep is not a relief. Getting a simple cold is not simple for me. It always almost develops into a sinus infection or bronchitis that requires antibiotics.
That being said...I can treat all of this. I take medications to slow the progression of the disease. I can limit my intake of gluten to help with the inflammation of my joints. I can use eye drops, drink plenty of water, and suck on sugar free hard candies. I can take antibiotics when I get an illness that other's immune systems would be able to fight off.
I know that how I feel some days is not normal. I know to do all of this to take care of myself because I have a diagnosis. I have a diagnosis because of my son.
Had Gabe never died, I would never have stopped to take a look at my own health. I would have continued to think that the mind numbing fatigue was a function of being a parent. That the joint pain was just from over use. My eyes and mouth have been dry for so long that I don't remember what they feel like normally.
Had Gabe never died, I may have had many complications. Not only do I have Sjogren's, but I have a clotting disorder. What would it have taken to get my attention? A stroke? Pulmonary embolism? Permanent incapacitation?
I now focus on the fun in my life, precisely because I don't know for how long I can fully enjoy it. I try to laugh at myself and the absurd around me because there are days when I don't want to. I try to be there for my children who are living to the fullest I can now, because I don't know for how long my health will stick around.
I don't want my kids to remember me as being sick. I also don't want Gabe's death to have been in vain. The greatest gift that my son gave to me and his sisters is the gift of that diagnosis and the treatment that accompanies it. Because of Gabe, I can eliminate that fatal part of the disease definition.
Thank you, son.