Butterflies

I can’t take back what has happened.

I can’t fix it. I can’t change it. I can’t even get my body to cooperate enough to erase the reminders of what Lupus has done to change my life. My family. My marriage. My everything.

All I can do is move forward and hope and work and push through it all.

I’m so scared though. So very, very scared.

It seems easier to type that I’m scared than to say it out loud. Telling name-less, face-less internet fairies that may or may not ever read this and may or may not ever care.

That’s not to say you don’t…care, that is. You aren’t the name-less, face-less ones though. You are my friends.

Tonight I just type into the void because I am getting better and it’s scary as hell.

I’m following doctor’s orders impeccably. Crossing every t. Dotting every i. I will not go back. I refuse to go back. There can not be a flare. Or another ER trip. Or even a cold or flu.

Why?

Because we’ve hit the end of the line here. Well, I say ‘we’ as in the royal ‘we.’ And I say it as my heart thumps so fast I feel like it might just jump out of my chest.

I’ve spent the past few days taking inventory. I’ve come to the conclusion it is my turn to take care of business around here. My doctor agrees I am strong enough. Sure, I have a ways to go and I have to remain stable, but he’s given me permission to become a bit more independent.

This is needed, because independence is what I thrive on and it is what I must prove to others so they can exhale and maybe, just maybe, find some joy.

I want to lie and tell you I find joy in the small things like being able to pack lunches for the kids or even participate in carpooling them to school…but everyone needs some joy that isn’t associated with someone else.

We all love our children more than life itself, yet we all need something of our own.

I have had nothing for myself for two years now. Nothing except Lupus.

Not a girls night out. Not the ability to meet a friend to shop. Not even the fun of a glass of wine after work. Not a yoga class.

Two years of NOTHING but doctors, hospitals, surgeries, treatments. The goal was and remains to get me back to work. To get me back to doing what I love. To get me back out in my garden. To get me walking Disney instead of being pushed in a wheelchair. To get me off the steroids and then to get the steroid weight off my body so every single time someone looks at me they are not reminded that I am SICK.

But I am more than afraid something will go wrong. We’re so close that now I’m shaking with fear, knowing that any step backward will devastate.

I can’t have that. I don’t think you understand how important it is that there are no more steps back.

Maybe I sound like a lunatic. Everyone with chronic illness knows there are ups and downs and you go forward and back. At least, that’s what they tell me. But now that we’ve found the right drugs, and we’re making that slow and steady climb…I will not go back.

The past two years were a hell I do not wish upon anyone. We are looking at trying to modify our mortgage because for SEVEN months the long-term disability company that took money out of every single one of my paychecks has been ‘reviewing’ my claim. They are sending me to see another doctor who will, no doubt, say the same thing FOUR OTHER doctors have said. That every test and lab work says. That anyone who has seen me knows. That the treatment I am now on is showing to improve. That I have LUPUS (and a host of other auto-immune titles I won’t bore you with) and this renders me disabled.

Today I managed to take my kids to buy fishing poles at Target. Then I TOOK A NAP. Because for TWO YEARS I have rested and lost organs and had a STROKE and now I need to build back up all the strength I lost. I need naps after things like a quick trip to Target.

And I will do this. I have NO DOUBT.

I just don’t know how to ask those around me to have faith and believe I can. I can’t ask this of them any longer. While I would love to have their support as I crawl across the finish line, I truly must do this alone. I don’t want to, but I no longer have a choice.

I have to do this alone because I’m the only one who can stop those back tracks from happening. And I can not ask those around to give any more than they already have.

So yeah, it’s scary. But I’m telling myself it is only scary because I can see light.

I have just enough strength to fight to get our home in order. To fight for the modification on our mortgage the President promised to people like us…those who paid their bills, despite hardship.

I have just enough strength to make sure I get my long-term disability or a lawyer to make sure she gets it for me.

I have just enough energy to apply, even though I did not want to, for social security disability and fight with them.

Because with what I have gained in strength and health, I’m going to use FIRST to take care of my family. I have to make sure my illness means we do not lose our home. We do not lose our way of life. We do not lose whatever is left of any peace of mind we had- because again, as the President says…no one should go bankrupt because they GOT SICK.

So while the doctors work to get me back into fighting shape, I’m going to use the phone, the web, the little driving I can do, and I’m going to try and save everything we worked for all these years.

I don’t know if any of it will work.

And there are no guarantees tomorrow I don’t land myself back in the hospital.

But you had better believe I am fighting like hell and my priorities are straight. With what my doctors are allowing me to do, I will be using all that energy just to clean up the MESS Lupus has made in our lives.

Which is why anyone who says we don’t need ‘Obamacare’ is nuts. Which is why anyone who says we don’t need to help the middle class is nuts. Which is why anyone who seems to think family leave to care for a sick loved one isn’t important is nuts. Or protections for workers – protections that are usually the result of collective bargaining by unions. People who tell you these things are not needed clearly haven’t walked a mile. Come spend just a day or two at our house. Come and see what it is like to not know what the next blood draw will show- will it mean another week’s stay at the hospital? Followed by a batch of bills that put us further into debt. All because I GOT SICK.

I am scared for my health, but I am infinitely more scared about what the result of my health has done to our lives. I’m the one who got sick- yet my whole house suffers. My entire family suffers. People buying plane tickets to help with money they may or may not have. family giving help in every way they can. And it blows my mind to think of those less fortunate than we are….the ones who don’t have the support. The family. The ability to go into debt.

And that is an anger and rage inside me I don’t think I can explain in words. I can only show, via my actions, that my first order of business is to continue down this path of wellness and to take steps to remedy the destruction my illness has wrecked upon everyone I love.

No one plans to get sick. No one plans for an accident. No one plans to have to explain to their children and husband that they do not know for sure if Lupus will leave them alone forever…or if it will come back again.

There may not even be a finish line for me. Only goals here and there. Things like getting back to work, taking the kids to school, getting dressed up for a night out with my husband and watching his eyes light up as he sees a glimmer of the old me inside. The woman he fell in love with and has honored in sickness and in health.

This? This is what I live for

I may not have been very good at this at the start. I was stubborn. And it cost me dearly. I thought I could do it all alone and I thought I could do it all quickly.

I found out the very hard way there are times where you must rely on the support system you have, and you must, must move slowly. Slow and steady wins the race.

I’m moving slowly still, much more steadily though. And I’ve been able to relieve some of weight as I try to give my support system a well deserved rest.

And I will shake with fear as I move forward…but I WILL move forward. My head held high (despite the humiliation Lupus has caused me daily) and my total independence nearing (despite the need for my family and friends standing at the ready to catch me) because I am getting well.

I BELIEVE it. The tests show it. And I plan on taking that belief all the way to every goal, every bucket list item, and even the smaller things like every phone call I need to make to clean up this mess.

Lupus had its two years. It may be stuck with me forever, but I’m regaining my independence and it’s going to need to take a back seat.

I have decided it is ok to be afraid. But I’ve decided that, not Lupus. And I’ve decided it is time for my fight to take a different turn. First I fought for my health, and while that fight will continue, I now have the strength to fight for my family and to make sure we come out of this whole and with everything we need be it financially or emotionally.

Yeah, I’m getting better alright. Because I can feel the butterflies in my stomach, just like I do when I’m ready to take on a huge project I KNOW I can rock. So while I might continue to be afraid, those fears should pale in comparison to the ones being felt by all those on the opposing end of my calls. On the opposing end of my emails. My letters. My fight to change this so no family has to go through what we went through just to BE SICK AND GET WELL.

I know I still have a long road ahead of me, but there is light. And I’m heading straight for it with those I love right by my side. Either join us or get the hell out of the way.

Ladykillers

Comments

  1. I am so sorry you have to worry about losing your home, and I so relate to some of your story. I have Stage four endometriosis and the years up to my diagnosis (that andhypothyroidism) were miserable, testing after testing..no one could figure out what was wrong with me. And when we finally did, it was three surgeries and many treatments later that I finally got better. And we lost everything we had. It was half my ‘fault’ from the enormous bills ( something like 70,000$) that were left even though I had insurance (fuck you Blue Cross(the entire time, and half because my husband lost his business. I understand the overwhelming and debilitating nature of having not only a chronic and painful and miserable disease, but then the financial stress. I hear the fight in you and I am supporting that. You can Do this. You are doing it. I am so glad to hear you are getting better. Have you heard of Life Extension? I used them like a Health Bible as I got better and I cannot recommend them enough. Their protocols are amazing. xo

  2. I have enjoyed chatting with you on twitter and keepIng you company during various things, and it’s wonderful to hear you are getting better. You are. I wiped the tears from my eyes to write this because I really do how how you feel and how you have struggled and your strength and optimism ate inspiring me with my own health issues. They’re of course nothing compared to yours and still it’s a struggle but your strength inspires me. thank you.

  3. This! This is the Erin that I admire. The Erin who is going to kick everyone’s ass to make sure that there is fairness in the world. I’ve admired you for a while, even though you insist that you don’t desire it. But this is why you *do* deserve the admiration. You’re not just winning your battle against Lupus; you’re trying to change the course of the war against chronic illness. I don’t like that cliche but it’s so true. And WHEN things change because of you, I hope you realize how impressive that is.
    I just feel bad for the people on the other side of the phone. ;)

  4. Go Erin!
    I think there is an end, but it’s very final, so let’s hope you don’t get there for a long time. But yes, a long road with many goals along the way til you reach the end.

    Keep up your winning spirit, but save the best of yourself for your family and I hope you have some to fight the good political fight. The rest of us will be here cheering from the sidelines and helping when/how we can until your have the energy for us.

    Remember slow and steady win the race. It was a long descent into the worst of your illness, so despite the urgency and your passions and the growing list of thing you Must Do, take your time and listen to your body as much as you listen to your doctors.

    We are here for you.

  5. Mom in Florida says:

    Ladies and Gentlemen SHE’S BACK….and I couldn’t be any prouder. Love you Erin.

  6. Yes!

  7. I like this passion and determination… you will win this, Erin!

  8. Yes, go, Erin, go! Get better and keep fighting. I’m keeping my fingers crossed for you, and keeping you and your family in my prayers. Be well <3

  9. Rooting for you all the way!

  10. I am with you! Rooting you on and cheering as you never look back! Walk to the light, Carol Ann! (Sorry, couldn’t resist that silliness). But seriously, Erin, I have such high hopes for your continued betterment. I know it’s scary to say you’re scared, and maybe even scarier to constantly BE scared, but I also have learned of your strength, your will, your courage, your determination, the love you have for your family and their love and support for you, and I know full fucking well you will continue to move only forward.

  11. Ginger Kenney says:

    Yes! I am so happy for you and for your family. I’ve never been where you are so cannot imagine. I have a different health issue that could take independence from me at any time and I know how scary that is…so I too try to do the right things too, it’s all one can do.

    I wish you the strength to fight those battles, and even more wish that any resistance you encounter will melt away so that you can have this precious time to spend with yourself and with your family and friends in more carefree ways. I wish you an abatement of worry too. It probably won’t end but you’ve had enough of that to last a lifetime already.

    Good thoughts and prayers for you and your family each and every day. You all deserve a big, big break!

  12. The thing I can relate to the most is the “everything has been for others”. I wasn’t the one who was ill. It was my late husband. I was “just” the wife and caregiver. I held the job, raised the baby to a pre-schooler, went back to grad school b/c it was the only way for a teacher to get the salary bump needed to make up for lost income and generally kept as many balls as I could in the air.

    I had an aunt who helped me not lose our house while Social Security dicked around with the disability claim (it took four doctors – all specialists and two “reviews” and the intervention of the senator’s office to convince them that terminal really is terminal).

    And when it was all over, I got sick b/c of the years of stress and the toll. Six years later, I still deal with this and that after effect. And I wish I could say that I have forgotten what it’s like to have to fight for everything and the frustration of dealing with ppl who have no clue, but that wouldn’t be the truth. Every time I have to deal with medical folks, I go into fight mode. I have lost most of my innocence and I no longer believe that DR’s and the medical world are mysterious things that mere ppl like me can’t understand. I question and I google and I bullshit. I am no one’s idea of a good patient.

    This kind of experience sticks with you in good and bad ways. It’s like having been to war or living through a natural disaster. But most of us are resilient enough to bounce back and define the terms of our lives again … because we are take charge and we want it bad enough to do what needs to be done.

    My cousin lost two years of her life to lupus in her mid-30’s. She nearly died. It took time to put her interrupted life back on a track – not the same one but one that led her to the life that she has now. She’s in her early 50’s now , been in remission all this time and unless you knew her really well, you’d never know what happened all those years ago.

    When you are in the middle of something, it feels so lonely and endless. But we are not alone really and everything comes to a conclusion. You are going to be okay. That day is coming.

  13. I love you Erin. With you in heart, spirit and soul and I KNOW if anyone can rock it and make Lupus eat it it’s YOU!

  14. You kick some serious (lupus) ass, Erin!! xoxo

  15. Hang in there. I have suffered for the past 3 years as a result of a doctor botching a surgery. I survived multiple ICU stays, 8 PICC lines, 2 feeding tubes and a combined 2 years of not being able to eat or drink. Anything. There were many, many times I simply wished I even had the strength to walk to the nearest window to jump out. And, on top of it all, my employer—the place where I had my surgery and had worked as a stellar employee for 23 years—fired me when I was too ill to return to work. I have fought the disability system and won. I have fought for my life time and time again and won. I have fought to regain some semblance of “normal”, and I am winning a little every day. You can do it. You will do it. You have made it this far and, no doubt will make it as far as you want. Even when it’s terribly frightening, just keep hanging on.

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