Tonight my daughter asked me if I would come home from my next surgery alive.
I’d been telling the kids that I’ll undergo yet another surgery in a few weeks time, and that everything was going to be ok.
They didn’t want to hear it, all they wanted to know is if I would be alive after it was all said and done.
Mommy is going to be fine honey.
Everything is going to be ok.
No, it’s not cancer.
How do you explain to people that- yes, you have an illness but it probably won’t kill you? How do you ask for help when you know so many have it so much worse?
I’m going to lose a chunk of my colon in a few weeks to try to stop the infections that have been ravaging my body since last summer. This after two hospital stays and a surgery. My family and I are hoping this is the beginning of the end, and the kids are getting so used to me being sick… it’s passing as ‘normal’ life around here.
Maybe I’m naive to just pour it all out here on my blog, but it’s what I’ve always done. I’m so sick of this. So sick of being sick. So tired of being in pain. So tired of thinking one part of my body is going to be removed, only to find out another is going in its place. My reproductive system has taken a beating. My gastro system hates me. Everything is one, big, infected and inflamed mess that is just screaming to be helped and healed. It’s stressing out my husband, my kids… me.
Yet I sit here feeling guilty I whine and complain about it because it probably won’t kill me. It won’t be terminal. It won’t be life threatening and I should really save my complaints for something that really matters. Is it a huge pain in the ass? Totally. I’ve been out of the hospital a week now and I can barely function. Today I went to the doctor, the grocery store, I cooked dinner and I picked up the kids from school and I’m exhausted.
Can I live like this? The short answer is no… but I have been living like this for so long. Every turn of my torso hurts and every food I consume may or may not turn me into a writhing mess. No, it’s no way to live but one could live this way if needed.
I don’t know. Maybe I’m just getting my frustrations out. I want to yell and kick and scream about other people and their perfect bodies and how they can just eat what they like and exercise how they like and travel and run around and do whatever… I want to be mad at someone. At a doctor who missed something along the way or a friend who is over the whole ‘oh you can’t come because you are sick’ thing.
But there is no one to be mad at and no one and nothing to blame. My body has a problem, doctors are fixing it, and everyone around me is being supportive and lovely.
So I write. I write to put words in front of my face and to bang my fingers against keys that some how release my frustration. I write because, before me, someone else wrote and I read it and said ‘ah ha! yes! me too!’ and instantly felt less alone. And I write because it makes me feel alive, something I promise the kids I will be when this is all over.
I am so sorry for what you’ve been going through. I’ve had ulcerative colitis since I was 19 and envy those who can eat whatever they want as I’ve had to be very careful for years. It is truly miserable to go through what you are going through…I do understand. Be gentle with yourself, I do understand the frustration…selfishly, I wish I didn’t.
.-= Deb Dobson´s last blog ..Remember George? =-.
I know what you mean. It’s so hard when you hear or read stories about what other people are going through. But the thing is that this is *your* pain. You have every right to hate it and to express how much you hate it. It’s scary when your kids think about you dying.
It sucks to be in so much pain and to not be able to function at a normal level. It sucks not to know exactly when you’ll start feeling better, like your old self again. I hope you do continue to keep writing about it here. There are a lot of people that are here to listen. xo
.-= angelynn´s last blog ..Happiness is meant to be swallowed whole =-.
I do not know what it is like to have an infection that bad.
BUT I do know what it is like to have someone close to you die of an infection and then have a friend from high school come close to dying from a Sepsis Infection.
Being sick is never fun but the alternative to being in constant pain and settling is NOT exactly a good answer. IF you have seen a couple of specialists and they agree with what you need to do to cure you of this or at least give you back your life.
You need to consider your kids may not understand why you are in the hospital nor will they understand what is going on with your body. But getting well is what is best for everyone.
The last thing you want is a Sepsis Infection which will kill you or come very close to killing you. Infections are NOT something you screw with and the earlier they cure them the better off you are.
Death is the alternative when you are messing with infections. It is how I lost my Mom when she was 60 years old two and a half years ago. Not good.
Just roll with what is going on and hopefully you will be healthy again!
.-= Jamie Favreau´s last blog ..What Role Does Technology Play for You? =-.
I can so relate to what you just wrote.
I have Fibromyalgia. For years I struggled w/many, many weird, painful symptoms, including IBS. Often the testing was as bad or worse than why they were testing. The hospital stays were many. The results were minimal. And I often held the pity party that was, “why can’t I just be normal like everyone else.” This all started when I was 18 & I was diagnosed in 2001 at age 32. No surgery wasn’t required. In fact, the diagnosis gave me little other than credibility (something I’d felt a huge lack of for years, so it was not a small thing). Now, I’ve been dealing w/a herniated disc, which I can’t seem to get resolution on. I can relate, because I get similar questions from my kids. It’s frustrating at best. It’s a first world problem, but it’s your problem. So no, it may not kill you, but that doesn’t mean it still doesn’t suck. Just because you don’t have the worst of everyone doesn’t diminish the suckatude.
The most I can offer (beside the total, you are so not alone) is to get the help you can afford so you can get better as quickly as possible. If you can afford someone to help as an “assistant” by all means do it. Not just the house cleaner, but someone to make sure the homework is getting done, baths are happening, soccer practice is made. When you can do it, and it’s reasonable then you go too, but when you can’t/shouldn’t you aren’t stuck scrambling to work it out. I do not have someone like this, but I’m realizing it’s really what I have needed & perhaps I would be much better had I done something like this.
Hang in there, lots of prayers & good karma heading your way.
GET BETTER!!! (((HUGS)))
.-= mamaspeak´s last blog ..Not Just Ruining Professional Baseball Careers =-.
You write because thank God your HANDS don’t fucking hurt!!!
#SUCKIT GUT INFECTION!
Write on!
.-= amanda´s last blog ..Angles of guile =-.
Kick. Scream. Whine. Complain. You do whatever you need to in order to deal with the hand that you’ve been dealt.
It’s OK.
You cannot compare what you’re going through to what anyone else is going through. It’s all relative. Sure, there are lots of people that are dealing with a lot, but that doesn’t lessen the reality of your pain, Erin.
It’s OK.
So, you write. And you scream and you yell and you pitch a fit if you need to. Do whatever works. You need an outlet, and if pounding out your frustrations here is the answer, then so fucking be it.
It’s OK.
Being in pain sucks. Flat-out SUCKS. And the fact that you don’t have cancer doesn’t make yours any less legitimate. Be angry. And take comfort in the fact that your husband is amazing and loves you. Take comfort in knowing that your kids are amazing and that they love you. And that we do, too.
It’s OK.
.-= Melissa DelGaudio´s last blog ..The Yin & The Yang of Customer Service =-.
You have every right to be sick of being sick. Illness doesn’t have to be terminal to horrible. You have every right to be pissed, to scream about it a little bit, to wish you could run ahead at full speed as you are accustomed to doing.
I’m so glad you are getting the surgeries, though. I hope this is the beginning of the end of this chapter of your life. You shouldn’t have to live in pain.
I do miss you, though. 🙂 Get well soon, Erin.
.-= Rita Arens´s last blog ..He Didn’t Go Crazy, He Just Went Tiger =-.
Do whatever works and don’t feel guilty about any of it. Thinking of you and wishing you well.
.-= cartoongoddess´s last blog ..Freak Family goes for a Ride =-.
The notion that “you can’t complain because others have it worse” is something only trolls and idiots promote. Complain away.
.-= Suebob´s last blog ..Madam, surely you jest – the horror of the Yosemite West/Mariposa KOA =-.
Complain away, indeed. You have every right to do so, particularly right here.
.-= patois´s last blog ..The Secret Library =-.
Wishing you peace and healing and sending a big fat #suckit to sickness from St Louis.
.-= KBO´s last blog ..Life After Lost =-.
Keep raging, keep fighting, keep blogging – whatever it takes to get yourself through this.
There’s so many things I want to write… I couldn’t figure out just one comment to write so here are a few:
Supportive:
“We’re here to lean on. That’s what friends are for”
Flirty:
“Other people and their perfect bodies? You have a perfect body to me 😉 ”
Stupid:
“FIRST!”
Tea Party:
“You definnnitelee have sumone to blame. Barrrack Obama and his sosialist health care systum!”
Honestly – I hope this makes you laugh. Even if it hurts your tummy. You can punch me next time you see me. Mwah!
.-= George G Smith Jr´s last blog ..Looking Back, Looking Forward =-.
Yup. George made me laugh. Hard. And it HURT but it was worth it.
Chronic pain sucks no matter what is causing it. If writing about it helps keep you sane, write away.
Sometimes you stumble upon someone or something just when you need it most – like this post today. Thank you. That was magic. I’ll be thinking of you and your words.
Don’t underestimate your body and just how much it (and you) can take. What doesn’t kill us? Well, at least it doesn’t kill us, right?
.-= Elly Lou´s last blog ..Grumpelstiltskin =-.
Being sick sucks. You are not going to die, but that doesn’t dismiss the pain or the inconvenience. It just means that it isn’t the end of the world. Hooray, your discomfort is temporary, but that does not discount the fact that you are in pain. There is no reason to feel guilty about that.
.-= Sarah, Goon Squad Sarah´s last blog ..And I’m Having Trouble Getting it Back Together =-.
What wonderful friends you have! The comments are more telling than the blog. This surgery will be wonderful and take the pain right out of you. My brother in law had your same problems, and it was debilitating for him, but he is now very fine. This was about 15 years ago, and he has not had another attack. And he doesn’t have to watch his diet much, either. The puppy is adorable. Love to your family from Ohio. molly
.-= molly campbell´s last blog ..RECIPE FOR DISASTER =-.
Like mamaspeak, I can relate. I have Fibromyalgia, and an associated autoimmune disease called Sjogren’s Syndrome, and an associated disorder called Dysautonomia, all of which add up to one big “but-you-don’t-look-sick” response from the average person who has, generally, never heard of any of these illnesses, or, if they have, believes them to be nothing much but a minor complaint. And sometimes, they are not much, but at other times in my life, I’ve been bedbound and totally debilitated by them. I was diagnosed with the Fibro at age 19, and the rest years later. I am now 35, and through contact with friends who were in similar physical states, who I met online, I have found that there is a way to live with “stillness” (illness personified), to remember when someone makes a comment based on utter ignorance that it’s okay to say, “and you don’t look stupid, but what’s your point?” to find doctors who are knowledgable, do not think that depression is the sole reason for an illness that doesn’t show up on a blood test, to learn from the disability rights movement that we have rights, too, and to be aware of the fact that the number on type of disability today is a chronic illness.
Women often have “invisible” disabilities, which are quite real, whether they are well-understood or not, and you do not have to be the most debilitated person on the planet to have a disorder that can negatively impact every aspect of your life.
Writing, for those of us who find it cathartic, healing, necessary…..is immensely helpful. I hope that you continue to write, either about your struggles with your illness or about anything else you ever wish to discuss.
Write, because you’re a writer, and whether you are ill or not, you are still yourself, someone who your children are grateful to have in their lives, and who readers of your blog appreciate each time you write.
When you are sick everyone has a cure but surely you’ve been checked for gluten intolerance. Right?
I know too well how much surgery sucks it, but I am glad that at least they know what is wrong and have a plan. Wishing you the best.
.-= Gidge´s last blog ..A Day In The Sun – With TRAINS! =-.
Me too. Me too because what’s bothering me won’t kill me, but it still affects my life on a daily basis. I write, but then feel bad about making other people feel bad about me feeling bad, so I stop writing. My kids are also used to the routine where mom doesn’t feel good, so she’s in bed. ALL DAY. Or mom can’t walk or bend or kneel. Oh, and mom can’t go to the doctor’s. Or, mom went to the doctor’s and now we can’t go on vacation for a weekend now. It’s just on and on. SO I get it. Totally. Wish I could help more than just saying me too. I really do.
.-= Dawn @ Coming to a Nursery Near You´s last blog ..a no bottle zone =-.