I haven’t been writing because I don’t have words.
It has officially been a year since they took my gall bladder, my colon. My uterus. And my ovaries. And my cervix.
It has officially been a year since I walked into a specialist, and walked out having to tell everyone I love that I have Lupus.
It has been a year of gaining pound after pound after pound as steroids saved my organs and robbed me of my confidence.
It has been the worst year of my life, as I continue to make life harder for everyone. The never ending roller coaster that throws us high in celebration and then tosses us down with news of a stroke, then ANOTHER mini stroke and then up again with treatment and down again with pain.
God…the pain. The never ending, non stop pain that can’t even let me catch my breath because it’s too cruel.
I’m not going to pretend as if I had forgotten this anniversary. The one just after the other anniversary that should always be happy, not just an exercise in straining our ears to see if we can hear the clock tick down my life.
This year has taught me many lessons about the people I love. From the way my Father’s face fell as we left the specialist and I said the word, to the strain I see as my son rubs his forehead when he watches me take my medication, to the determination of my daughter as she plays doctor and saves every stuffed animal in the playroom, to the unannounced visits by my brother carrying food, hoping to get me to eat a bite, to my husband…my constantly worrying husband…who cleans and cooks and shops and moves and moves for fear if he stops moving, so will I, to my Mother whose voice is always near a panic as I try to explain how yet another treatment has not worked. They have endured so much with such strength.
I write this in the hope that next year this anniversary won’t sound so grim. That every year when I write about this date it isn’t as dire, or depressing.
I am putting this first year after having been diagnosed with Lupus in the books, hoping we never endure something like this again, and trying to find the strength to push forward with my body and my words.
As tough as this year has been, I’m just really freakin’ happy you are here at the end of it! The diagnosis sucks, BUT at least you know what you are fighting and can form a plan. You didn’t lose all that to the unknown, you lost it to Lupus. And while the plan may not be going as planned, thus far something has kept you around.
I grieve for you and with you.
But I rejoice that that you are here to write this post.
I hear and do not renounce your anger with life and your health. I can’t imagine what it must feel like to be in your place. I agree with your right to shout to the world from the top of your lungs that THIS FUCKING SUCKS!
But damn am I happy we still have you. Girl you made it a year and are still here to fight for another and many MANY more to come.
So you grieve. No one denies you that. But I’m also going to celebrate.
As I’m sure you are too. I can’t imagine how mixed your emotions are.
PS. I’m days if not hours away from birthing this baby within me which means I’m weeks away from going to the nearest blood drive and giving Giving GIVING! I want to do my damnedest to make sure you are here this time next year too!
I think the first anniversary is the hardest. It’s as if the realization of a whole year of illness peels away one of the last veils of denial about one’s condition, and what it means for your life. I will say that having watched you on every step of this journey over the past year – you kicked its ass. You and your family have been so proactive in getting the treatments you need, and in making sure that you did as much of what you would have done without illness as you can handle. You made it to Disneyland and the White House chica. You are a gimp rockstar. You will mourn less as time goes on and look at the accumulated time with pride for everything you will have accomplished in living the life you deserve with your family. Yea verily, LUPUS can suck it and weep. With love, Deborah
Erin;
I hate that you need to suffer through this and that your family struggles through it with you.
I love that you are so brave in the struggle and that your family and their love are there for you every day.
It is not the things that life presents to us that define us – it is the manner in which we deal with them. You and your family have defined yourselves in the finest way possible. I love you guys and think about you often – stay strong and find confort in each other.
And you will continue to fight because that’s who you are.
You will beat it and you will stand and fight for those who have no voice. Because that’s who you are.
I am grateful to have you in my life and that will not change anytime soon.
You rock. I love you, Erin. Keep up the good fight!
You have me crying… I am your boogery friend…
You are amazing beyond words Erin… beautiful, awe-inspiring… you take my breath away and I have this to say… YOU are not making life hard for everyone. You had no choice in this. Life happens and your family, your beautiful family knows how to love, and take care of their loved one that is temporarily in need of help. Period.
You are our heroine as I am sure you are to your husband… and children… and parents… definitely to me…
Sending you all the love I can muster…
SUCKITLUPUS!
Let us get one thing absolutely clear: YOU are not making life harder for anyone. Lupus is. You are not your confused immune system. You are not your missing organs. You are not your weight. You are not your pain. You are Erin. You are loved. The people closest to you stay strong because their love for you is strong, because you have earned the sort of love that can move mountains. They are doing for you only what they know you would do for them.
I continue to hope every day that your health improves and things get easier for you. If wishes were horses you’d have 365 unicorns with my name on them by now. xoxo
You’re a tough fighter, Erin. You really, really are.
Love to you and your entire family.
Sending love.
Next year my wish is that you’ll be writing this anniversary post talking about how badly the first year sucked but how grateful you are for this 2nd year in remission!
I’m with Jaelithe. I’ve been reading your posts on my feedreader, and damn, Erin, you are so freakin’ brave,tenacious, smart, and full of grace as you battle this damn disease! You only make the lives of others BETTER (whether you know them or not). That your family is enduring with such strength is a reflection of you. Sending only good energy your way and hoping for many, many painfree days for you and yours.
What Jaelithe said.
Ooof. You are not your confused immune system, for sure. *HUGS* & hoping for better anniversaries in the future, for certain.