The truth is this:
This illness will affect me the rest of my life. I cannot escape it.
That, my friends, is a very unsettling and tragic thought at the moment.
And I am tired of it. I go through phases like this when I get discouraged and I know I will see it differently at some point; maybe as soon as tomorrow. But for this moment, it is just hard. My health has been very unpredictable recently and has been that way since about May. After receiving a steroid injection last month, I had a good run for about three weeks and then the breathing issues started again. Issues that I have not experienced this significantly in about a year and a half. Over this past weekend, they seemed to be improving but then I realized over the past few days that they improved because I was in bed and doing nothing for two days.
After spending some time in Boston Saturday and then trying to walk my dog yesterday, I realized that even though I am managing the breathing issues better than a year and a half ago, they are not going away. Of course I have not started the round of steroids that was suggested to me because I thought I could get better on my own. And I hate the steroids.
My eyes have been getting worse in terms of the dryness which is making computer work more difficult, especially since I am doing a lot more writing and spending more time on the computer. If you have healthy eyes, appreciate them. It's a constant state of discomfort.
So back to my truth, the one about being sick the rest of my life. I guess I am scared because it feels to me that the Sjogren's business has been on a steady decline for months now. Sometimes it doesn't appear that way to other people because I have gotten so adept at managing my symptoms and looking "well". I cannot manage my life without medication and quite a few of them at that. I did try. I tried really hard. I still use acupuncture and other alternative/holistic approaches to manage my illness but the fact is, it's not enough. Nothing is enough.
See, I don't want to be the sick one anymore. I don't want to be dealing with a new or recurring symptom all the time. I want to be well enough today to do what I want instead of sitting in my house struggling to gather enough energy to bring up the two loads of laundry sitting down in the laundry room waiting to be put away.
It is difficult because most of the time, I stay positive. I have good days. I have good weeks. I know there are people less fortunate myself. I also know that I have a blessed life. I love the people that surround me every day with love and positive energy but they are often so intent on keeping me lifted up that they don't see that sometimes I just need permission to sink....and reflect...and acknowledge...and accept. I need a space to acknowledge that it's not all OK. That having a debilitating, chronic autoimmune illness which never leaves my side is worth crying over...and stomping my feet over...and writing about.....