Tuesday, December 6, 2011

Not All Rainbows and Puppy Dogs...

As I laid in my bed last night wide awake at 3am with a raging headache and painful, dry eyes that burned like hell, I realized something. One single truth that although I was not oblivious to before, all of a sudden hit me like the freight train that sometimes runs through my backyard in the middle of the night.

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.....


  1. I love reading your posts, Christine, because you are so honest. When you're "down," you let us know. And when you're feeling better, we know then, too. What is it about us humans that we take everything about our lives for granted?? Thank you for sharing this. Next time I get a migraine, I will think of you and be grateful that I don't have them tooooo often!

  2. Yes, I tend to write more positive posts mostly because I am just a positive person so I get a little nervous about posting thoughts that are more "down". However that is how life works and I always want to be true to me writing and myself. Thank you for reading Becky!

  3. I can so relate to this post. I have all the same issues and still work full time. There are days I just want to throw in the towel but I just keep going.People who don't know I'm sick wouldn't know it most of the time because like yourself I am so good at hiding it.Hang in there kiddo and know you have a sister in Sjogens.

  4. You do express it so well and of course we do have down days and nobody would know it. I feel I don't have it as bad as you do and can get along without steroids but on the other hand can not take steroids. So have to work with what is available. Do hope you can tolerate being off the steroids but if not and you feel better, take it. Life is short to live with pain day in and day out. God bless how ever it goes. Harriet

  5. April ~ I am so in awe of the fact that you can go through this and still manage to work full time. You are an inspiration to me! I am very grateful that we have connected and become friends.

    Harriet ~ Thank you so much for your ongoing support. I am blessed by your friendship...

  6. Since connecting with you over the last few weeks, I have enjoyed your blog so much that I have started to go backwards...and read all the ones I missed before I knew you. All are good, most strike a very personal chord but this one made me cry. Not the bad, sad, angry cry. The type of cry where the tears just slowly spill out in silence - knowing someone else understands exactly what I am going through.

    1. Your response to this blog entry touched me Cate, so thank you for that! I sometimes find entries like that difficult to write because I want to stay upbeat and positive. But I have to learn that it is just as important to write honestly....