Friday, September 7, 2012


* Due to my invisible illness itself, I was unable to participate in Invisible Illness Week 2012 this past September as hoped. However, I plan to blog again soon on this subject regardless. Thank you for your support!

Well…sort of! I cannot believe it has been a whole year since I started this blog. And as I prepare to do my best to start blogging for Invisible Illness Week 2012 I thought what better time to make a little pre-week introduction for right now I am in the throws of beginning one of my famous Fibromyalgia flares. Oh joy!


A year ago I had made some positive changes in my life to try and condition my mind for my “new normal”. Part of that was starting this blog, which as I had mentioned before, took a great deal of courage. Normally I am a very private person. But I felt the need to put myself out there so I could help others as well as myself. With some mild improvements in my care due to my doctors from both the medical and holistic perspective, I was starting to feel like I was living a little again and that things were once again becoming possible. Maybe not at the pace or level I had once dreamed of, but life was feeling good again just in a different way. As I have written about before, managing my illness as well as accepting it was key. Support from my family and my friends were crucial. For people to know that this is how it is, and I was not going to apologize for it anymore. That I was not going to worry about anyone’s judgment or approval. For it was no longer important to me. What was important was that I felt confidant enough to live my life regardless of what others thought of me and on my terms with myself. What mattered the most was that the people I surrounded myself with that wanted to be part of my life accepted me for who I was as I did them.

Getting to this point was not easy. And there are times when I still doubt myself. “If I only had not had extra sugar today or that second cup of coffee I might not be in so much pain and so fatigued.” An unreasonable thing to ask of someone who had to be up early for work and other important things I was trying my best not to have to cancel and so forth for several straight days in a row. “Stop it!” I tell myself. “You did what you could. You are doing what you can. You will do what you have to do based on what you can handle. You are being too hard on yourself.” Wow-I could not do that just a year and a half ago. I pushed myself. I hid. I made excuses as to why I could not commit to things. I cannot tell you what a relief it is to know that when I have to I can say “I am not going to be able to make it, I am just too tired and I have to be sure I am ok to work tomorrow” without feeling pangs of guilt from the person on the receiving end. It has actually made it…easier….to keep more commitments because just removing that exhausting thought process of “What if I disappoint them?” from my  mind gives me the freedom to go forward more peacefully. To know that if I do keep the commitment I am not going to have to worry if I have to rest a lot, sit down more or whatever it takes to keep up.

And so there I was on a sunny afternoon…Friday September 15 to be exact, in the radiology office awaiting my yearly mammogram checkup. I had actually forgotten about it. I had thought it was a week later, so the phone call reminding me of the appointment caught me by surprise the day before. Busy in my studio up until the last minute I changed and headed off to the appointment that I had seriously thought of canceling. I really was not in the mood to drive out there, to wait around, and to deal with any of it. Sometimes it seems as if my life is a seemingly endless barrage of doctor and test appointments and I get burned out. The breast cancer had a 5% chance or returning after surgery and radiation and my last six-month mammogram had been clear. So although I had been telling myself from the call the night before that it would probably be fine…there was a small part of me that had almost this odd premonition about it. What if my dread of dealing with this today has something to do with what the results might be? Nah, I thought to myself. That is just negative thinking trying to take over my brain. Even my husband told me later that day he had felt the same way. So as I sat flipping through a travel magazine smelling freshly brewed coffee one of the nurses has just made I began to relax and get excited about traveling again and put the silly thoughts out of my mind. My family and I had been planning a trip to Italy together and my husband had never been and I was truly getting really excited about the idea. I was feeling positive about doing things and about going forward. And then they called me in for the mammogram. And the rest is history.

No, really, I mean history, thank goodness! Because from the moment Dr. I-Have-No-Real-Bedside-Manner-At-All-And-Even-Though-I-Do-This-For-A-Living-I-Am-Clearly-Out-Of-Touch gave me the suspiciously bad news it was only recently I that I felt this detour was coming to and end. A detour of pain, surgeries, horrible flares, medication fogs and facing my own mortality. And only within the past month did I finally start to feel like I got off that dusty nowhere back road and found my way back to the main one again lined with trees and promises. As always, it may have not been too apparent on the outside of me or even in my last blogs, but it really took a toll on me. The two surgeries left me more fatigued and exhausted than even I expected with autoimmune issues. But the end result is that I am grateful to be alive and doing better…and blogging once again for Invisible Illness Week 2012.

So today after over a week of work, working in my studio, working on my home and not getting enough rest I have that feeling of overspending my spoons.  I am fresh out. I knew it was coming, but I also know that is how life is sometimes as a spoonie. It is like the spoonie credit company called and said they were temporarily deactivating my card. “You hit the wall, kid. We will be happy to activate your card again once you make some rest payments.”

And with that, I re-introduce my blog and myself for Invisible Illness Week 2012. I look forward to taking part in the San Diego online conference as well as reading all the other wonderful blogs out there.

* My regular “editors” are not available for this blog today, so you will have to excuse any errors you may find. Being able to even type today with the pain searing in my hands and arms along with some extra brain fog is often a recipe for mistakes here and there! 

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