Cooperation.

I haven’t felt much like writing. I haven’t felt much like doing anything, really.

My husband had surgery on his shoulder over the Thanksgiving holiday and it brought back every memory in the world for me when I was down and out after three surgeries and my eventual Lupus diagnosis. Except this time I was able to at least be the caregiver, instead of being the one laying in the hospital bed.

Of course he didn’t need to stay inpatient and he’s already back to work. The differences between us are like night and day. I’m so happy he’s healing well and I’m so happy his recovery is going smoothly. We deserve at least that.

The kids have handled it well and I’m so very proud of them. I think the only one having issues is MOM. Being the over-emotional, idiot I am. PTSD? Who knows.

I want this nightmare put past us so badly I’m having real trouble focusing on taking things slow. I want it all NOW and I want it all OVER WITH. As my body slowly gets better, and fatter from the steroids, I want my old body back IMMEDIATELY and I want life as it was. Exactly as it was.

I’m willing to make a few compromises. I’ll slow down with certain things. I will. I’ve learned to listen to my body. I’ve learned to eat better. I’ve learned to do a lot. But I want these extra 100lbs OFF ME NOW and I want to feel like a human being again.

I do not feel human. At all. Every day is just a waiting day. I wait for my real life to start over again.

Sure I try to live in the now and enjoy moments with the kids and with my husband but mostly I wait and wait and wait for my body to come back and my life to come back. Why I equate the two, I’m not sure. Other than it’s where my comfort zone seems to be. I’m uncomfortable physically. Rolling over. Washing. You name it. I’m uncomfortable in public. I feel like myself on the inside, and then wonder why people treat me differently…and then remember I don’t look the same on the outside.

I see myself in the mirror and I look hideous. I am obese. I am filled with drugs that have puffed me up so awkwardly I can’t even fit into clothes that are MADE for larger women. That’s how this steroid weight comes on…wrong. All wrong.

By January 1st I hope to be off the steroids. If that is the case, I plan on creating a very strict diet with my doctor and I doing what I am allowed physically in order to get this weight off. Sadly, I have not been eating poorly. So I am scared that once off the prednisone not much will change.

I’m scared of many things.

Yes, I’ve learned to love who I am, but it’s a different kind of love. I know I can be better- healthier- because I’ve seen it. I’ve been there. I realize this drug has saved my life and I am thankful, but now I want to move on. I want the side effects gone. According to my doctor the risks have now outweighed the benefits. No pun intended.

So the drug cocktail continues to be tweaked as I continue to make progress. It’s just so slow. And the slowness is killing me worse than the disease. Two years are a long time to wait to get your life back. So I’m taking back the parts of my life I have control over.

I guess I just thought we’d be further along by now. I guess this holiday season I thought I’d be in some slinky dress ready to make my debut to the world again, running 5ks with my husband and having him show me off.

Instead I want to hide. I’m embarrassed. I’m embarrassed for my family. I want them to be proud of me. I WILL make them proud.

First by beating this disease and second by getting as close back to the normal ‘me’ as possible. And I swear this on my life it will happen. I’ve never been more determined. Ever.

Now to find a way to make my body cooperate.

Comments

  1. Erin, I follow you on twitter and read your tweets a few days ago where you referred to being embarrassed by your weight gain. I felt so much empathy for you. I have tinnitus, which is annoying but not serious and sometimes that drives me crazy — but NOTHING compared to what you’re dealing wth. So when I read about what you go through I am simply in awe of your strength. You’re a rock star.

  2. Thanks Pauline. I appreciate it. I just want to feel like myself again.

  3. Hi Erin. I’m MJ, we were tweeting back and forth a bit last night. (my twitter name is MarlaJan) Although probably not as severe, I know what you are going through. My SLE caused damage to my heart (and I already had an underlying congenital heart defect) requiring me to go on high loading doses than 40mg prednisone/day and to go on disability from a job I adore.

    My coping mechanism (er..defense mechanism) is to make jokes, put on a happy face and declare I’m not going to let SLE and prednisone be the boss of me. But it is.

    I was the girl we all hated. Size 0, yet curvy, and could eat anything I wanted. Now I’m a size 10 after gaining 40 lbs from the prednisone. It actually hurts. The weight is uncomfortable. And yes, I know size 10 is not big in the grand scheme, but I look in the mirror and it’s not ME looking back. I look in the mirror and I’m disgusted. I stare at the stretch marks behind my knees (did you know you could get stretch marks there? I didn’t), the pad of fat behind my neck, the chins, the acne, the chipmunk cheeks that make me look like I’m 12. My hands shake, I can’t keep still, I don’t sleep, I get angry for no reason, I have no sex drive, nor could I imagine why my husband would find me attractive right now anyway. I shaved my head because I figured it had to look better than the patchy bald spots all over my scalp.

    Slowly but surely, I’ve come to grips with it. It’s the drug you love to hate. I had to buy a new wardrobe and I have no hips left from the prednisone eating my bones. But, the damage to my heart hasn’t progressed. It did something right by me.

    It will take time, but we will get through this. I’ve been reading your blog and tweets for quite awhile, and you are an inspiration.

    Luck Fupus!

    MarlaJan

  4. Erin, I’ve read your blog for years. Read you when your kids were young and you were probably the way you want to be again.

    Thing is, back then though I loved your political stuff, you often made me uncomfortable. You were young and beautiful and privileged and had a fabulous life.

    I was seeing myself getting older, I didn’t (and don’t) have a stylish life. I was struggling with life as a working mom, struggling with money.

    But then I watched you struggle with this horrible illness. You did it with courage, and humor and with posts that make me smile or laugh or cry. I’ve seen you giving your children the best you can give them no matter what. I’ve seen how your husband loves you and stands by you–and I know that he, like my own husband, loves you no matter what you look like, no matter what happens–which is the real definition of true love.

    And Erin, you are more beautiful now than you ever were back in those earlier days.
    Your mirror may not say so, but those of us who are your mirror here on the Web know it.

  5. I’ll toss in the spouse point of view. My hubby has Lupus/RA. He’s on prednisone. He hates what it’s done to his body, also. Especially hates how it’s given him chubby cheeks and a double chin. He’s extremely self-conscious about it. We had pictures done a couple of weeks ago. When I received them I couldn’t believe how great he looked. I didn’t notice his neck. I noticed his great smile and the dimples that I adore. His sparkly blue eyes and how handsome he looked in the new outfit he was wearing. Yes, I’m aware he’s different than the man I met 15 years ago, but to me he’s still my love. We both look different as it’s no longer the 90’s. Who cares? He’s precious. I’m so happy he’s with me every day and able to enjoy our life together. I don’t give a crap about his chin.

    Trust in your spouses and realize they love you- and will continue to through whatever changes come your way.

  6. Things will change when your body rids itself of the steroids. I promise you. My skin cleared up, my face stopped being so damn puffy, and I lost the weight. It wasn’t overnight, but I definitely got back to normal Molly. You’ve seen my roid pictures, and you’ve seen what I look like now. You will get back.

  7. I have a cousin with Lupus. She studied to be a medical doctor, and a few years ago had to give up her practice. Hang in there and as you noted, just listen to your body, while listening to your doctors. Thank for sharing your experiences.

  8. Elizabeth said it well. You are beautiful now, in part because you have the courage to share and be honest about how frightening and painful these challenges are. I know Aaron and your kids see your beauty and love and feel proud of you, as you are right now, because I can see it from way the fuck over here…

    May the painful photographs you are dreading become touchstones of strength for you in your forever ahead. Future you looking back at them, all: fuck this new puny obstacle, I made it through THAT.

    Hugs and love for your past present future queen.

  9. i admire you and have followed your blog since long before the lupus. I have no doubt you will lose the weight and be back to your old self but hearing you speak so disparagingly about the experience of being overweight as not being human makes me sad. For many of us, who are just genetically more predisposed to gain weight, we live with it and thrive with it. I’ve always been overweight, maybe smaller than you are now, but I’ve never been the single digit sizes that are the norm in Southern California. I think as women we are far harder on ourselves and each other about size and what it means to be larger. It’s not always about diet, many overweight people have great diets, many thing people eat junk and remain slim. I see those pictures of you at your larger size and yes, you are different but also beautiful with rounded cheeks and softness. Not perfect, maybe, not human, no. If you were to remain this weight you would still be you.

  10. I recently had to have surgery and just from a few short weeks of having to take it easy and not being able to do the things I normally would, I felt so frustrated and impatient to get back to “normal.” At the same time I was laughing at myself for being so impatient, when what I went through was practically nothing. My heart goes out to you, Erin. You are fighting an incredible fight. I will say, tho I don’t know you other than a bit through the internet, I think your children already have plenty in you to look up to and be proud of. Best wishes and I hope all goes well with weaning off the meds and getting back to the YOU you feel comfortable in.

  11. Erin, we met last year at Blogher in San Diego. I was the blogger from Canada whose son had been so horrifically bullied at high school.

    I wanted to let you know – the last few years, my husband was battling Hepatitis C, and my best friend passed of cancer. I can relate to how you want you life back. I think some days that I have survivor guilt, having come through the last few years physically unscathed. We moved from our old town, John made it through treatment (and was successful! Yay!) and have been working hard at re-building things bit by bit. I’ve struggled with blogging too, at times having nothing to say and wondering why I do it at all.

    I want you to know that I met you at a time when things were darkest, and you gave me so much hope. I clung to that for a full year while things sorted themselves out and while they didn’t turn out exactly like I hoped, I always remembered what you said about staying strong.

    Slinky black dresses come and go, Erin. Who you are is already so beautiful, and I’m positive your family is WILDLY proud of you.

    Thank you.

  12. that was what community is all about. Helping each other. Lifting each other. Even kicking each other’s asses every so often. Thankyou. I needed that.

  13. donna Posted on I completely retlae to that. Last summer I was in a bad flare and my prednisone drastically increased. Wow, made me Crazy!!! And, NO sleep for months. Was alot of fun, haha! Gained almost 20lbs, too. That makes a girl real happy.My dr wanted me to taper back down to 15mgs really fast-10mgs per wk! Now tapering down is no picnic either. I could not do it as I was so stressed I was in adrenal fatigue and knew I could not add another blow to my system.I am now down to 15. Still having problems w/insomnia and ache like mad, but feel more like myself so it is worth it.The one good thing is that it did make me understand my mother. She had severe lupus-was dx’d in the early 50 s. She took massive amounts of pred until she passed away in 1986 @ the age of 57. I never knew what caused her irrational behavior, now I do prednisone. She did have some CNS involvement, but I am convinced it was mainly the prednisone.Rest in Peace, Mom

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