My doctor has talked about Social Security and Medicare.
My Mom mentioned getting a handicap sticker for my car.
I’m 36-years old and I still want to learn to surf and walk the parks at Disney World. I realize that last one seems lame but, it’s what is upcoming in my life and I guess it’s the little things.
I want to be able to dance to more than one song while the family plays Just Dance 2 on the Wii.
I want to be able to go to the grocery store and not have to nap when I get home.
But I won’t. If I am lucky, I will go back to work soon and *walk a 5k in March*. But mostly likely I have to get used to the idea of being somewhat disabled.
Oy. That hurts to type that.
More than it should, I know. I realize it shouldn’t be stigma or a bad word in my vocab…but it is. It’s not me. And I will fight it ever being me.
Because I am NOT really disabled.
I have a disorder that is being a whore. A big, fat, whore. Once we get it under control I am confident I can get out of this fat suit, out of this exhausted frame, and running circles around my block.
Yes, I am angry. And I think that’s healthy. I think that’s ok. I have every right to be angry. Just when we think we’re getting back to normal around here I end up sitting in a recliner, hooked up to an iv, getting chemo pumped into me. The word ‘unfair’ comes to mind. But call me selfish.
I want to take my dog to the dog beach and run with him next to the ocean. I want to feel good enough to wake up on a Saturday and join my husband at pilates. I want to be able to clean the kitchen after I cook dinner and not feel like I just did the most strenuous workout known to man.
I want to not wake up in a pool of sweat.
I want to not be taking 60mg of prednisone a day, for months on end. And gabapentin. and plaquenil. And injections of methotrexate. And vitamins. And folic acid and ridiculous amounts of D that should come from the sun while I sit on the beach and drink a margarita, not popping a capsule.
I want to see my eyes again, uncovered by my steroid swollen cheeks.
I want to take a bike ride with the kids. Hell, I want to take 50.
I want to drink a god damn beer.
I just want to live. And I want to destroy the world disabled, the idea that I could be disabled, and the notion that I will be anything but normal again.
Maybe this is why I’m so addicted to Angry Birds. Those fucking pigs are Lupus and I’m the birds. I keep flinging myself into them and yet they keep coming back. Stealing my eggs. And that makes me ANGRY.
Hulk like angry.
Maybe angry is what I have been missing through this whole ordeal. Maybe I haven’t been MAD enough. I’ve been scared. I’ve been upset. But I think what I need is to get down right pissed off.
I’m better when I’m mad. …no really. Even my Dad will tell you it’s true. Want Erin to have a better basketball game? Piss her off before the game starts. And he would try too.
Want me to work my ass off to win an election? Show me an injustice.
I think that’s exactly what it’s time to do here. Take the idea of disabled and bomb it like a black Angry Bird. Say FUCK THIS and put on my ass kicking boots and stomp.
It’s time to get mad, and take control. Even if that is seemingly impossible. Because if there is one thing I have learned through all of this, it’s that ANYTHING is possible.
I can make the difference. I can be the one to help find the cure. I can take control of my health and know I am not disabled, not doomed, and certainly not destined to lose even ONE egg to those stupid pigs.
*If you’d like to join me in defeating Lupus, you can read more here.
Erin, I’m so with you. I’m starting to have more and more additions to what lupus is doing to my body and I’m so so scared. I’m angry, I’m tired, I’m pissed that I’m wearing a brace on my wrists. I’m mad that I can’t do anything I used to do.
Ok, no more stealing your rant.
I follow you and I think if we hung out and drank some virgin beers, we’d have a damn good time.
Xoxo
Hi Erin,
I so feel for you, when i read I still want to learn to surf and walk the parks at Disney World my heart went out to you.
This maybe of no comfort and I feel I should share this as I have seen people heal i different ways.
Firstly I have a friend here in Australia who does Amazing healing- this is an interview I do with him- 2 more coming- I will introduce you via twitter too- my video is at http://suziecheel.com/simon-hay-soul-healer-to-give-100-healings/
the second person is Brandon Bays and The Journey: – Des and I have both used and worked with the journey http://thejourney.com
Sending you love and healing higs
Suzie
You know what I like so much about you is you don’t give up and you always fight for what is right…. Keep being you and keep fighting!
Lupus Sucks !
From someone who has Medicare, Social Security AND a Handicapped sticker:
Don’t knock Medicare, which takes care of me incredibly well. Or Social Security, which increases my income (marginally). I got my handicapped sticker when I had my hip replaced four years ago. It has been an awesome “FTW” thing all over California when I need to park. Beg for one on your hands and knees. My daughter, who is your age, steals mine.
And I get Juverderm shots in my face to simulate the look you are bitching about:-)
I know how you feel. You are too young to be so debilitated. But think about all the people who are worse off. It’s very difficult to do all the time, I know. But do it every once in a while to make yourself feel better.
You WILL be better. I have a friend with lupus who, after the dramatic onset, doesn’t hear from the disease for years at a time through diet and exercise.
Not saying you shouldn’t be angry. You should be. Own your feelings, as you have done. Then let go. Be. Here. Now. Believe me, your kids and your family REALLY don’t care how you look.
Love you…
I don’t know if this is encouraging or just another lame “it’ll get better” story, but my niece has Lupus. She went through hell for a year, got better, went through a few more months of hell, and has been 85-100% ever since. For her it was all about finding the proper treatment and of course it’s about remission. It seems remission happens when the Tx is on target. Right now, she’s in love, married, and just had a baby and seems to be doing great. I will wish the same eventual good luck and health for you.
Thank you Erin. We are the same age, and although we are afflicted with different whores, I am completely with you. It is good to get mad. I am disabled. Now. Disabled is not what I will always be. I have no idea how I will manage doing the laundry this week but I refuse to accept that I will never climb a mountain, dive an ocean or dance until everyone around me is dropping again. I can’t see a direct line between here and there but I am doing everything I can for my recovery now. I insist on every treatment, push to the top of every waiting list, and take every service I can in the meantime so I can focus my life on kicking this whore’s skanky ass til she no longer dares to show her face around here. You are strong beyond belief, redoubled by the love of an amazing family. Someday when I arise from the ocean’s depths I will look back to the beach and see you and Nicky running free.
With you all the way.
Lupus is fucking stupid. You need to get mad at the stupid.
Hi 🙂 Suzie Cheel introduced us on twitter. Once you identify with an illness it becomes who you are. In time, unconsciously, you start believing the doctors and the disabled sticker. I’ve healed a lady who had Lupus. She saw me twice, and it was gone. I have no medical training and I’m completely transparent and honest about my work. I may or may not be able to help, but I seem to be having consistent results. I worried about leaving a comment because it feels a little like spam, and I’m not a salesman. I just wanted to give you some hope, rather than a label. Take care, everyone 🙂
I only recently started reading your blog. I think I saw it on the Babble top 50 list right when I was learning how to use google reader.
Anyway, I’m really sorry to hear about your current struggles. For some reason this post reminded me of the stages of grief. Anger is the second step coming after denial, but before bargaining, depression, and acceptance. I don’t know if there’s really any point in me telling you something you probably already know, but maybe you’ll find it comforting to know that you are moving forward with your feelings.
Hugs to you!
Being disabled sucks, it totally sucks. It is the most unfair thing in the world to have your mobility taken from you. I know this cause I spent two years of my life in constant pain using forearm crutches to be able to walk.
However, don’t give up hope. I was one of the lucky ones whose doctors were able to find a way to get me walking again. I will probably be on anti-seizure drugs for the rest of my life but it is a small prices to pay for my mobility.
Take your meds, follow your doctor’s advice but most importantly don’t give up on your dreams. You might be one of the lucky ones too. I really hope you will be.
I’m so sorry to hear that you are still suffering so much. I identify with you because of my own recent health struggles and it is sobering to watch your ups and downs and know that I will have them, too. Only, instead of playing Angry Birds on the couch or in bed, I play mine almost exclusively in the loo. Damned IBD.
Take your anger and use it for good. I hope you and the Angry Birds bomb the shit out of that Lupus and leave it for dead in a pile of rubble. I’ll dance on its remains with you, ok?
Having a sticker on your car doesn’t mark you. It doesn’t say who you are. It’s not admitting defeat OR predicting your doom. It’s just a thing that might make your life easier for a bit. And you deserve that right now.
It’s the same with the Medicare etc., in my view. Taking it now doesn’t mean you will still need it a year from now. These are just tools that might help in your battle against those nasty green pigs.
I so understand.In 1996 I got a flare and ended up not being able to do more than walk to the bathroom.It was bad and I thought it would never get better.It did and while things are still hard I am able to do some stuff.When it was all the way in remission it was my first time in copenhagen and I was able to bike and see and do alot more than now and I was 34 in in 2001 when I was doing great.I like my sticker now as I dont have to fight for parking any more 🙂
I would like to comment on Simon Hays message….getting a diagnosis is the first part of acknowledging what you have…it does not label you, especially like the rest of society deems it to be as Simon has stated…it gives you the power to know what you are dealing with and gives you options of how you are going to deal with what you have !! I would like to hear from Simon Hay”s lady that he has claimed of cure from Lupus, so we can educate others of this miraculus response that all Lupus sufferers may be able to attain!!!!