Lupus Awareness Month. You Want a KickOff Post? You Got One

Lupus awareness purple bow on my IV by wonder nurse @alina_khodad !!!!

It hits me at the oddest times. Not ever when there is an IV in my arm or when I’m talking to a therapist…but like, just now…when I see the photo of a beautiful newborn.

And this heaviness crushes my chest and my heart begins to pound a bit faster and I feel that ache.

That ache for all those things I wanted yesterday (read: NOW) that I must wait for. For all those things I will never have. For all those things that must change because life has dealt me a hand I’m not sure how to play.

I dream about secretly saving money to take the family away on a surprise cruise. And realize I have to schedule it around treatment and make sure it’s well after that one drug I get because that drug means I catch every germ on earth and I can’t be out in public and I have to make sure … you get the idea. And my dream fades.

I dream about going back to work after having an inspiration for a project as I finished reading up on some social media political ideas and begin to plan how to approach my boss and exactly who I would want on my team. And then I remember I need to be stable between treatments for a good length of time and stop getting all these infections and setbacks, even if they are small. I remember I’ll need to ramp up to balancing work and health and life while I currently have enough trouble just balancing health and life. And my dream fades.

I dream about my honeymoon over and over.

I dream about nights out with girlfriends where we dance and I need to take a cab home.

I dream about meeting my husband for dinner with friends across town. Or by the beach. Or with his co-workers. Such simple things he does all the time with many people.

I dream about running in the park with my children, laughing. I dream about volunteering in their classes.

And then I remember I shouldn’t be out in the sun long, due to the medication. I remember I can’t run, really. I remember the germs in the classes could land me hospitalized.

The ache returns. Harder. Stronger.

I want it so bad. I have been working so hard. I take my pills, I sit with that damn IV in my arm as they infuse whatever they infuse into me day after day, week after week, month after month. I try yoga. I try the diet that is supposed to help with the steroid weight gain. I barely eat now but I’m still a prednisone oompa loompa. I have done everything the doctor’s say and yes, I’m getting better but at what cost? I know there is light at the end of this tunnel, or so they tell me…but I still can’t see it because despite FEELING better there is too much still missing.

On the days I feel good I do all I can- I have gone back to school (online only as I can’t sit in a classroom yet), I drive carpool, I make dinner and breakfast and lunches and I do the best I can with housekeeping. I’ve been trying different things, doctor approved, to help my body and mind from horseback riding with my daughter to gentle yoga to just walking the dog.

I feel like I am trying so hard some days I’m creating stress by being so very determined. Mostly because I can’t stand to feel that ache. I don’t want to feel that ache. I want that ache to go the hell away and understand there is now a new normal around and this is just how it is going to be.

Only better. Because it will keep getting better. I have come this far and I will keep going. It’s slow. It’s painfully slow. But it is happening come hell or high water because it will get better than this. THIS is the new normal for now and it will continue to morph until I am happy with my life.

Yes, I have much for which to be grateful. And believe me, every single day I celebrate. Every. Single. Day. I am happy and laughing when I open a jar without pain. I have cried when I climbed the flight of stairs to our bedroom to realize I wasn’t out of breath. I’m patting myself on the back for every ‘A’ I get in class and for every treatment week I make it through without sleeping the entire time.

All I want is someone to hold my hand and tell me this is going to pay off.

This is life with Lupus.

 

Learn more about Lupus at Lupus.org

Comments

  1. xoxo
    I’ll be cheering you all the way!

  2. Your kids, your husband, your family and friends… they all have you. That’s a start, right? ;) And one day, you’ll be back to work and back to craziness and while you may never miss this, you’ll be grateful that you had the break to dream ahead.

  3. The fact that you can feel the ache is proof of how much better you have gotten. But I don’t blame you for wishing you could fast forward to that end of the tunnel. I can’t wait for you to put your energy back into work, too. xoxo

  4. I have the most unfortunate experience to have lost a friend to Lupus her name was Doris, I never knew anything about this disease until Doris told my husband and I after a car accident my husband was responsible for. The sorrow I felt was damning I could not focused on family my husband to be direct. I needed to run with the children away from the pain of losing a friend and having to deal with my mate causing a woman more pain then she could bare. I am not running any more

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