I miss having colds. You know, the kind where you get all miserable for a few days, people say how sorry they are you feel poorly, and you eat lots of soup. Colds are a manageable illness. Almost fun.
Now I have to explain, over and over again, we’re not entirely sure what’s wrong with my body (it’s an auto-immune disorder). And I can’t just take a box of tissue and some tea and go lay in bed.
It’s been two weeks since my total hysterectomy, and eight weeks since they took 13 inches of my colon and my entire gall bladder. It’s been 16 weeks since they first cut me open, poking around and cleaning inflammation and adhesions, trying to figure out why I had been so very ill.
I look like skin and bones, and not the good kind. As my husband says, I don’t look like someone who has lost a lot of weight…I look like someone who has been very ill. And it’s true, I’ve been very ill. Very, very ill.
I’ve penned my funeral wishes. Put on paper what I want for my kids and family after my death. Thought very hard about what should happen if my vital organs were attacked like their non-vital sisters.
It’s not easy to think about these things, but I was calm and they were necessary. In the moment you just … do. I felt I had to at least prepare for the worst so I would have no regrets if it all went South.
Family has flown in and out-of-town. Friends have visited. It’s been 16 weeks of questions and theories, all while I lay on the couch in my pj’s trying so hard to hold in all the emotion flooding my usually bustling body.
We’ve all sort of soldiered on around here, waiting. Waiting to see if there will be four or five surgeries instead of these three. Waiting to see if they find Cancer. Waiting to see if I feel better when I awake from anaesthesia.
We know now there is no Cancer. And we are cautiously optimistic as this last surgery has me feeling better than I have felt in a year. But there always seems to be the other shoe that drops.
Fuck that shoe.
I’m done.
And I will keep that damn shoe in the air by sheer force of will if I have to. I feel stronger. I feel better. I’m eating, I’m walking more than just around the block. And I have every intention of revising those death wishes for many, many years to come.
There is something that happens when you spend your 10th wedding anniversary dancing in your kitchen, instead of a romantic Inn as planned. There is something that happens when your oldest child needs therapy for his mounting anxiety and your youngest re-enacts nothing but sickness and death with her stuffed animals. There is something that happens when you spend too many weeks in pj’s on the couch, petting your new puppy (a gift to help you heal) and wondering how to conquer the world while feeling more like taking a nap.
This body is officially on notice. There will be no other shoe to drop, there will be no more surgeries. There will be no more of this disorder. I’m done. And you’re getting off this couch.
Yes, my dear body, you can #suckit.
In fact, the next time you end up on this couch, it will be because of some measly cold. You will get tissues and maybe some soup, if you’re lucky.
Perhaps I’m being too harsh on this frail frame of now 123lbs. But I don’t care. Tough love baby. Tough love. I have children to raise, a husband to dote on, and Democrats to elect.
…And I refuse to let anything get in the way… even my stubborn self.
I haven’t been a sick as you but I understand how you feel when you’re told they don’t know what is wrong with you and then the doctors and specialist give you a name of a disease…it Sucks donkey balls! I hope & pray for your recovery.
.-= Toastgal/Susan´s last blog ..COPD Here Is My Middle Finger =-.
F*ck yeah. F*CK. YEAH.
.-= Chicky Chicky Baby´s last blog ..Pimp my dining room Seriously =-.
Our thoughts and prayers are with you and your family Erin. You are one tough cookie and you will certainly get better. I have no doubt.
If I agreed to vote for a democrat or two come November would that help?
Fate is weird. I came to your website for the first time tonight. I’m experiencing symptoms similar to yours and have spent countless hours in neurologists offices over the past 2 months. I have a 3 year old. I also have a 7 month old. They can’t figure out what is wrong with me other than the very non-specific “peripheral neuropathy”. But they don’t know why. I am glad that you got a diagnosis and will pray for a treatment plan that will work for you. My very best wishes to you and your family–I’ll send good vibes into the universe on BOTH of our behalves (behalfs?) tonight.
Krisin.
You’ve been in my thoughts.
You are going to conquer all of this bullshit.
.-= Miss Grace´s last blog ..Dont Be An Asshole =-.
Gah. Thinking of you, Erin, and your family. *hugs* & I’ll be thinking good mojo thoughts for you.
.-= Al_Pal´s last blog ..Sensitivity- I have it =-.
Oh this was heartbreaking to read about your kids’ stress and you dancing in your kitchen for your anniversary. And still, as you said, it’s not cancer and that is GOOD. YES. I agree with you – fuck that shoe. Don’t even keep it up in the air -throw that shit OUT. Give it to someone else who needs a shoe. Donate it to the Salvation Army. God bless you and your family – it must be so good to have close family and friends to see you through this and I hope now with a real diagnosis that at least your mind will be somewhat relieved enough to move forward with dealing with this crap.
.-= Leila´s last blog ..The Price of Beauty =-.
I just wanted to let you know I understand your feelings as a daughter and a mother and I say fight, fight, fight. It is the grit and the determination that show your family and the world that you will do more than is in your power to be there for them. Your words are priceless in summing up what many have felt, what a talent you possess.. Thank you for putting in print what has been felt by many mothers who did not win the battle and for many mothers who will, like you.
My daughter asked me the other day what it felt like to have a “disease”… I took the time to let her know that it didn’t feel all that different than any other kind of being sick except that you didn’t expect necessarily to get better next week. I also told her that my health issues are things that happen *to* me – not things that *define* me.
This is your year of bad health. That’s different than you turning into some sort of victim to it… You have never been the type to succumb to that sort of crap and I’m glad you aren’t still.
Hang tight lady. This is the part where you get to show your kids and everyone else that you’re still very much alive and living, thank you.
((((hug)))) love to you my friend!
I did not read a single one of these comments. I read your post and know to a degree how you are feeling and what my husband has gone thru with his 12 inches of colon removed. I was just back in Michigan this last week. Thought of you as we drove down Shadylane and got to your house. Got the Macomb Daily on Sunday and the ‘PCB’ conflict is still going on. They have no idea where it came from. I have an autoimmune disorder, so does my Mom now.
I have amazing doctors here at Mayo. The first question the genetic doctor asked me was. “How do you think this happened”? Not the most normal question a doctor asks. I told him, I think it is from the PCB’s in Lake St. Clair. He looked at me like I was crazy. I have spent a childhood at the beach gulping in water. As I am sure you might have. My husband grew up on Shadylane until 3rd grade. Which ment he spent a lot of time in Lake St. Clair as a child.
Do any of your cousins have these problems?
I will say, lots of Lay’s and Vernor’s hugs coming your way. Let me know if you want to engage the PCB information in Lake St. Clair. I really think there is something there. How can so many of us so young have so many 80 year old issues?
Yes Tami, please email me – queenmediallc@gmail.com
Always unstoppable, you.
.-= Mrs. Flinger´s last blog ..Seattle and our proverbial blue-balls =-.
I was sick/am sick. Thought it was an auto immune sickness….it wasnt. I was there. I wrote down what I wanted for my kids. I planned my funeral. I wrote goodbye letters. My parents thought I was crazy, my husband was always cleaning up hair that was falling from my head and throwup, and my doctors were trying. I had my 5 year old make me dinner cause I was to sick to stand up. I had a baby pretend he was throwing up in a toy bucket cause that was what mommy did….. lots of it. It sucked. I hated it. The doctors turned out….. were wrong in my case. I was suffering from a brain injury. I am still but I am better…..twitter was there for me. You were there for me actually!! I wrote. Other then that….that’s all I have to show for my last couple years of my life………except….now my son isnt making dinner. I sometimes do and my son is playing with buzz and woodie instead of pretending to throw up. It’s the small steps that get us somewhere, the slow healing, it is the big jumps that make us slip and fall and end up on our ass all over again. When a bad day has come, twitter will always be chatting…the convo will always be going and we know….that you are the queen of conversation starting anyway. 🙂 xoxoxoxoxoxo
I think I am getting one of those colds, you know, the usual kind, and I was thinking about you this morning, and how your life is so different now. I think about you every day, in fact, and the little angel asks about you sometimes, because she has caught me crying knowing you had to face another surgery, my new friend who I was just getting to really know when you had to leave work. My new friend with kids my daughter’s age who loves to write and with whom I have more in common than I ever realized.
And there’s nothing to say, except I’m sorry this is happening to you. I’m praying the new meds take hold and do what needs to be done. If anyone can conquer anything, it’s you.
.-= Rita Arens´s last blog ..The Blogger Fourth Wall =-.
Have you read/Tried?
Up the Creek with a Paddle: Beat MS and All Autoimmune Disorders with Low Dose Naltrexone (LDN) [Paperback]
Mary Boyle Bradley (Author)