Wednesday, March 28, 2012


I have wanted to write here the past couple of months, but every time I started something, I became lost. With so much information in my head and limited time and energy, I did not know where to start…or end. As I was watching Toni Braxton and Christine “Spoonie” Miserandino being interviewed about Lupus this evening, I started to cry. Just having them once again validate what it is like to be autoimmune was both comforting and yet as always, emotional. It has been one of those days. And as I quickly countdown the days until my next surgery with so much on my to-do list including appointments, work, events etc., I am feeling that familiar pressure. That pressure that reminds me…I can no longer stay up until 2 am because well, those days are over when you are a spoonie.

As my co-worker said to me this morning “There must be something in the air. I mean…my socks are pissing me off!” When she said that, I burst into laughter. I knew exactly what she meant (we have all had a bad sock day…you know those socks at the bottom of the drawer when you are behind with the laundry that slip down or have uncomfortable folded seams that cut into you and it just makes an irritating day well…more irritating? But you never throw them out?) My laughter must have been a bit infectious because she started laughing, too. We both needed it. “I know what you mean!” I choked “But the way you said it!” Well, you had to be there but you get the picture. Another person confessed to me later that morning that with all the pressure she was feeling as a single Mom and all that had been happening she went home and just cried it out after she received a traffic ticket to top off her day. And one of my closest friends, also an autoimmune patient, has spent the last 24 hours with a mind numbing migraine while taking care of her kids, her elderly and ill parents and everything else including attempting to care for herself, which is in dire need right now. She text me this evening that she had to go to three pharmacies to obtain the medication her doctor had prescribed for her migraine and I quote “why can’t it ever be simple?”

So that is when it hit me. I thought, let me make this simple.

I am overwhelmed. Tired. EXHAUSTED. I do not want to go back under the knife next week for the second half of my reconstruction  (another lovely four hours, another set of lovely drains, another six week recovery) despite that fact that yes…the cancer is out. Yes, I am very lucky and blessed I am not writing this with no hair on my head and chemo streaming through my veins. But still…. Fibromyalgia and cancer? Not a fun mix. Not an easy one. I got the “You look good!” thing a lot the past several months and frankly, I was honored and happy people thought so. I think the “good” they saw was the inner happiness that I had, within a few short months, survived cancer and dodged thyroid cancer. Sort of a rush of adrenaline that kept me going. And I took my good days and made the most of them. But my body has been telling me a different story. I store up just enough spoons for what I have to do, and then I hide out and muddle through everything else. It is a true story. And well, that is fine. It is what it is, and always has and will be.

However, I foolishly thought that between January and March I would feel better and catch up on everything and everyone. Call and/or write the people who have been so loving and supportive. Get some house projects finished? Get my mind and body ready for the next round? Write the great American novel. Discover a cure for mad cow disease. Heck, I can barely keep up with the laundry. And the extra feel-good time I have had has been spent trying to be with the ones closest to me, enjoy life, and well…try desperately to spend time in my studio doing what I love to feed my soul. Oh.. I should mention I have had to spend a lot of time on the phone and writing letters to bill companies and my insurance trying to straighten out various different mistakes (on their end, of course, big surprise) which takes a lot of energy and effort. This angers me, because it is a waste of time when I could be doing something far more productive with my healthy feeling hours. My Mom keeps telling me not to worry, everyone will understand. I hope they will. Because I am just well, behind schedule here. I even get worn out talking on the phone. When my Dad’s wife said to me recently during a phone call “I do not want to keep you long. I know with limited energy right now long phone calls can even wear you out.” I was so grateful to her that she pointed that out. I have had trouble just being on the phone for long periods of time lately and I feel badly when I can only talk for a short time to friends. With any luck, my thank you notes will get out by August. And I am kind of not kidding about that one!

So I guess the thing is…nothing is simple. In our minds…we try to make it so and I think in the process we just might wind up making it even more complicated trying to keep it easy. Sans pharmacies being lame enough to not have a common prescription in stock, I mean, really? And I should practice what I preach…or at least write about. Looking at my past blogs I need to take my own advice. So, tonight, that is what I am doing. If this reaches out to a few of you I feel better. I just want you to know that I am still very passionate about blogging for autoimmune diseases, cancer, art and life. And I plan to keep on doing so. But for now, I am still in the process of healing and getting ready for another healing phase. But at least I know what to expect this time. At least this time there will be no waiting for a daunting phone call with “the news.” I can see the light at the end of the tunnel. And despite everything, as always, it is quite marvelous.

So stay tuned…and stay patient. I am still here. Cheers. 


  1. I'm sorry you have such a rough spell coming up. Just keep remembering that you have rainbows in your clouds and we're all pulling for an easy recovery! You have a very talented Dr. who's going to do a perfect job!

    .......and if that doesn't work-grab a Ding Dong!


  2. Heh heh heh..."grab a Ding Dong" LOL!! Love you guys!