Goals

I needed something.

I needed a goal.

I know I have months, no… I have years of these treatments ahead of me and while I know they are working, I needed…something.

#suckitlupus I'm in charge

Right now my life consists of trying (and mostly failing) to keep those I love living their lives as normally as possible. Keeping them happy. Keeping them oblivious to what I go through daily. Keeping them happy. Did I mention that already?

You’d think that would be easy, but it’s nearly impossible.

While the kids probably remain the least affected, my husband has found his own ways to cope. One way being his inspiring 5k, mud run, and half marathon running. He is in amazing shape and continues to bury his old records with every new race. I am insanely jealous of his determination and dedication to his health and his goals. Not to mention his hot, hot bod.

Meanwhile, my job has been to sit and take pill after pill and infusion after infusion. The steroids have left me sloth like. So when word came that my infusions are, in fact, working…a twinkle of hope awoke inside of me. But even that twinkle can be snuffed out quickly when I think of all the work that remains ahead.

There are just so many more IVs to go. So many more treatment sessions. So many more days of 4-6 hours with that damn thing in my arm pumping the only drugs that seem to be doing anything for my body in and through and in and through.

And all I do is worry about the kids and Aaron. It is almost to consuming at times. My mind working overtime trying to come up with ways I can ease the pain, the stress, the never-ending worry. Did I mention the constant worry?

All the while I haven’t done a thing for myself. Sure I’ve bought myself ┬ásome clothing out of necessity. But I realize now that I have done absolutely nothing since I got sick except work really hard to NOT be sick. Doctor appointments. More doctor appointments.

I can’t really go out. Well, I can but I can’t. Going out for lunch means staggering my afternoon dose of pain pills so I can drive. Or asking someone to pick me up and take me.

So I really don’t have a social life. Unless you count gossip from the nurses my social life.

I am not working, so there are no co-workers to chat with. I’m probably overly chatty with the kids’ teachers and principal and other administrators because they are adults and WOW LOOK ADULTS THAT ARE NOT WEARING SCRUBS!

Which leads me back to my goals. Now that I’m feeling a bit better, and we’re lowering the evil steroids that have made me the size of Jabba the Hut and one of the most undesirable women on earth…goal #1 is to lose the steroid weight and get my body back in shape.

It will be my hardest goal, thus why it’s #1. I’m so restricted right now in what I can and can’t do that walking the dog -very, very slow- just a few houses, is about it for me.

Which leaves me with diet. Even if I eat next to nothing, the prednisone doesn’t seem to care. At least, according to my doctor, not until we get me tapered down to 7mg or 5mg. Right now I’m at 12.5mg. Next week we’ll try 10mg. And next weekend I plan on re-joining a nationally renowned weight loss program. I may not lose a single pound until I’m off the steroids, but at least I will be establishing good habits for when the time comes.

Leading me to Goal #2- feeling hot, feeling like myself, taking my body back for ME. I want to have more work done on the tattoo on my back, and I want it to snake down to where all those damn IVs go.

Sneak peak

So as a reminder as to where I will END UP, today I got a new tattoo- the goal tattoo. The one where all the others will end when this journey is finally over, or at least when it’s wound down and life is at rest at its new normal.

It will also serve as a reminder each time that IV goes in. Each time they take blood. Each day I sit there over and over and over again feeling worthless and like a waste…a reminder that all of this is worth it. My children need their mother. My husband needs his wife. I am not replaceable and there is no other me.

What they don’t tell you about chronic illness is it makes you question if those who love you would be better off if you did succumb to your illness. If they would find peace and no stress and have a ‘normal’ life with some healthy woman who could do all the things you can’t and give them all the things you can’t.

…and as you fight for your life your mind wanders to the dark places no one’s mind should ever wander. Because there is only one you. No one does things the way you do, sick or well. No one. No one loves them the way you do and no one ever will.

So goals are set. They may seem like small goals to the average person, but a year ago I was in so much pain on a regular basis I was in and out of the hospital just so I could be made comfortable. Which makes my small goals REALLY HUGE and really important steps to taking back my life.

Now that we have the right cocktail mix and we head towards remission, I’m setting these goals so I can take back control and take back some of my body. Lupus may always be there, but can never have all of me.

And then, once my body is back under my control…we make more goals. I want to return to work. I want to travel. I want to walk my kids around Disney World and hold my husband’s hand…not have him push me in a wheelchair.

I want to enter a room and flirt with the bartender while Aaron puts his arm around my waist and leads me to a table of friends who talk to us about work and kids and life and not once mention doctors or illness or hospitals.

I want to live again, and not in this half-life where sit for hours with an IV in my arm waiting to feel better.

I’m getting there. I’m thrilled to have been healthy enough and strong enough to achieve a goal today. A small, but important goal that will serve as a reminder of all the others to come.

Psssst #suckitlupus & every Iv I ever get from here on out

Just one more step along this road, but I am happy to say this step moves forward. This step is my doing. This step was ALL ME.

…and it was fucking huge.

Comments

  1. My most recent meltdown, which accompanied my most recent setback included an extended session of sobbing while telling my husband I should have died, this would all be over if I had died.

    It’s not just myself for whom I am weary of this process, it’s my husband, my parents, my brother & sister-in-law, each setback made me feel like I was somehow failing them. My rational mind knows better but all the anxiety and all the worry and all the having to just keep marching forward wears us down and lies to us.

    Congrats on the new tattoo. If all goes well at my July 6 appointments with the neurosurgeon and oncologist I’m going out and getting my ears re-pierced. They closed during my 17 day stay in the hospital in 2010 and I’ve been wanting to get them re-pierced ever since.

  2. Hi – I love reading your blogs. I wanted to ask if you have applied for SSDI/SSI yet? I went with Allsup. They do all the work and so far they’ve been really great.

  3. that is singularly the most beautiful tattoo i’ve ever seen.

    jackie

  4. Todd 'tojosan' Jordan says:

    You are amazingly strong. Fighting, sharing, keeping on.
    Love how you’re facing forward to better times.

  5. Fighting the fight is a major life changing event, when you come out the other side, you will know you are the strongest of strong and someone we should all strive to be. Just reading your post tell me you’re one beautiful person who doesn’t deserve the hand she’s been dealt but is dealing with it with dignity and grace, you’re a hero and don’t forget it.

  6. Ha! And I asked on Friday if you got a new tattoo! Go get ‘em Erin!

  7. Nice work! I like tattoos as a way of reclaiming your body and control. Can’t wait to see the finished piece.

  8. That is the most amazing tattoo ever. I can’t wait to see it cover your arm completely.

  9. Rock on, sister.

  10. I think goal number one should be to stop calling yourself ugly names like “the most undesireable woman on Earth.”

    Just. Stop. Doing. It. You wouldn’t ever, ever say it about someone else. Don’t say it about yourself. The changes in your body that make it feel alien to you are just another stupid side effect of this illness and the awful drugs required to treat it. You are still the same woman your husband married. He wouldn’t stop loving you if you lost an arm and he hasn’t stopped loving you because of lupus. And if he DID he would be stupid because you have one of the sexiest brains ever and you still will when you’re 102.

  11. That tattoo rocks! Your post made my heart fill with empathy for you and I really just want to give you a huge hug right now and an “atta girl” for setting your goals!!! It seems your body is struggling more than mine right now and if you can get back to exercising then I have no excuse!!! Lets work out together! You totally inspired me! Hang in there, my new friend!!

    By the way, I have “the tattoo project” on my blog. I would love to post about your tattoo if you are interested. If so, just visit my page and let me know!

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