Monthly Archives: August 2013
I am sorry I disappeared for a while friends. Life has been a real struggle lately.
My health tumbled last week and I have been dealing with the grim reality of it all. I have been and continue to be one sick chick.
All last week I was very tired, feverish and in lots of pain. I still am, though today I feel like I can at least function somewhat. The joint aches were particularly bad in my hands and arms, which made it impossible for me to type anything. I had cluster headaches for four straight days, so severe that they made a migraine feel like a cake walk. The glaring light of my laptop only made the pain worse, so I stayed offline as much as I needed to.
In going through all of this crap I wasn’t exactly motivated to blog. My spirit was suffering. It still is. I’m back here, but not in the way I want to be. I have been battling feelings of worthlessness. I have literally stood at my bathroom mirror, not recognizing this shell of a person I see staring back at me. I am now too acquainted with the cruel cycle of hope crushed by disappointment. I am tired of everything: pain, isolation, uncertainty. But I am especially tired of doctors, and the broken system they represent.
The day after my last post I had a visit with one of my doctors. I have only seen this specialist a few times. With her I lack the connection I have with my primary care doctor, and it is painfully obvious every time I sit down to chat with her. After going through my lab results and discussing the failure of my recent drug regimen, she noted that I have lost eight pounds without trying to.
She then looked right at me and very coldly told me that I “desperately” need therapy.
I do know that for the first time in my fifteen plus years of being sick, I am not coping well. For the past six weeks in particular I have not had a solid grasp on this. I literally do not know how to be a sick person right now. But it sure as hell wasn’t her place to say anything. I do see my primary care gal in less than two weeks and I know the topic of therapy will inevitably come up. I have to love myself enough to keep an open mind.
I find myself trying to figure out the next step; how I get well, rebuild and move forward with my life. In January I looked ahead and truly believed that this would be a big year, for personal and professional growth; a time when I would forge ahead with big projects, a renewed sense of happiness, success and what it means to live a life of meaning. Instead the year is now more than half over and I feel like I have done very little besides be a sick person. Yes, I know I am loved. I know my life has meaning. I have known the blessing of joy, and the blissful feeling of gratitude for all that is good in my life. But illness has built a wall between me and all of those wonderful things I am supposed to feel. I just don’t know how to tear it down when my body is feeling so painful and broken.
I love my husband and I know his love for me is equally as deep; but I am finding it difficult to confide in him right now. I know he wants me to, but I feel this tremendous guilt, over what lupus and fatigue and pain have done to our marriage. I open my mouth, tears threatening, and I’m paralyzed. The words won’t come out. Maybe when I’m stronger.
This morning I turned to my babies, my angels in fur suits. They listened intently. The kissed away my tears. The softness of their fur comforted my aching skin. Grace on one side of me and Jack on the other.
The very best therapists in the whole wide world.
I know I’m going to be alright. I don’t know when exactly, but it will happen.
Have a beautiful week everyone.
(Sorry to be such a downer, but it feels good to be so open.)
Everything has beauty, but not everyone sees it.
This post is many days in the making, 52 days to be exact.
I wanted to write it on my 40th birthday.
I just wasn’t ready until now.
Because these words are about my outside.
On that late June morning when I entered my fifth decade and embarked upon another jaunt around the sun, I wanted to capture the moment in some way. I felt hopelessly limited in my ideas. All I could come up with was one: taking a photo of myself, and the thought made me nervous. I really detest having my picture taken. I’ve never felt confident in how I look in photos, even when a professional is behind the lens. If I am in a social setting and a camera comes out I shy away, even in the company of family and friends. It was difficult being followed by a photographer for a full eight hours on my wedding day. And I fly into a panic when anyone tags me in a photo on Facebook.
Nevertheless, on that day I committed to a smart phone “selfie.” This is the end result.
This is it. This is 40. Not a hint of makeup, save for a quick swipe of Burt’s Bees light pink lip balm, so my mouth wouldn’t disappear against my face. I desperately wanted to hide behind the perfect illusion that only cosmetics could create; but I needed to be honest. I needed to be me.
I first posted this photo to Facebook, amongst the love and kindness of family and friends. That was hard enough, and I was just too ashamed to post it here. I don’t expect anyone to understand this. All I can say is this: illness can, and does, fuel a complicated relationship between what is on the outside and what lies within. I know how I am supposed to think and feel. But I can easily get down about my often flat, lackluster, thinning hair. My perpetually tired eyes. And my sometimes lifeless, pale skin.
When I first saw it, I cringed. The usual narrative ran through my head. My nose is too long and too big. My eyes are too small and too far apart. My hair is so flat and ugly. My skin looks old. I was, literally, getting sick to my stomach. And I carried these terrible thoughts with me for far too long.
As usual, time does have its way. I just wanted to stop, stop the madness and hatred that lupus and pain and everything else had stirred up inside of me. Because there is the illusion I see; illness and what I think it has done to me. And then there is the truth. That I am, in fact, beautiful.
Because we are all beautiful.
Not long after I pushed through my initial fears and shared this image on Facebook, a beloved cousin of mine had a few precious words for me.
“Allyson, when I look at you I see your mother.”
She could not have possibly given me a higher, more loving compliment.
Have an amazing day, friends. And always know you are beautiful, inside and out.