Lately, I've been living in the past remembering a time where walking was easy. Parking at the very far end of a parking lot didn't terrify me. Going into a store and needing a motorized scooter to get around wasn't a necessity. Sometimes, I just wonder what it is that I'm supposed to be gaining from this experience.
For as long as I can remember medication was a part of my everyday life. The stale smell of a cold hospital was something I've known all to well and it doesn't bother me. In fact it's actually comforting. Having relationships with nurses is something that is normal for me and that's perfectly ok. I mean I don't know how life would be if it were any other way.
I do know how life was when it was just the hospital aspect that made life complicated and not the worsening of my health. I mean I'd have a doctor's appointment every 3 months and an admission roughly 4 times a year for 2 weeks. In between all of that I was healthy, to a point. I could walk for very far distances without supplimental oxygen. Hell, I could even run a little. I was active in life and if I wanted to go somewhere I went. I didn't need to grab oxygen tanks. I didn't need a bag of medications just to go to an amusement park for the day. I never thought about the walk up the ladder/hill to the water slide and now I fear it.
🎖I feel like I've been in training my whole life for this level of my disease. I feel I should have an extra man by now or some gold coins as I've made it through a few bouns rounds. However, this game just seems to get more difficult and sadly it doesn't have much of a reward.
Don't get me wrong, yes I am here and yes, I am living life to the fullest that my body will allow. That in itself is a huge reward. Yet, what I've lost along the way seems like such a slap in the face and sadly, no one will understand unless you've lived a life remotely close to mine. As we are all different and look and feel about life differently.
When I think back of the things I've lost along the way in order to still breath each day, it truly breaks my heart. I've lost jobs, friends, holidays, vacations, family get togethers, sorority outings, weddings, walking with pride, and so much more. People always get irritated when you have to cancel last minute or don't answer when they call. It hurts so bad for me that I can't even begin to explain it, but it happens.
Each day I celebrate the smallest of accomplishments like literally getting out of bed, brushing my hair, or making my own bowl of cereal. When I used to do 2 photoshoots, a runway show, dinner with friends, all ending with drinks around a bonfire in one day. Now, I'm lucky to get out of bed and eat a meal with my man.
It just seems like the more energy this life drains from me the less I can do and the more I tend to lose. It's such a heart wrenching coin toss for me - To live and breath or to lose who I am and the life I once knew.
My glass is still half full,
Sandi
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