Thursday, October 15, 2020
Thursday, October 8, 2020
Wednesday, October 7, 2020
Happy Hump Day, my Slayers & Slayer Lovers! Going everyone is well!
Fourteen years. That’s possibly a conservative guesstimate, too. Fourteen years is the length of time that clothing/fashion/wardrobe have been an ongoing challenge. A maddening, infuriating, cash sucking, meltdown inducing, pain in the ass challenge. It makes me high maintenance in an area where I want to be anything but!
As Scleroderma symptoms have waxed and waned. As Scleroderma has altered my physical being and added new challenges - my wardrobe sometimes, oftentimes, has to adapt. Just when I think I’ve nailed an item, it seems my body changes and that style of item is no longer functional.
Additionally, as Scleroderma has changed my physique, the more androgynous characteristics have come fully front and center. Any glimpse of myself in a mirror and I see my father, in his unhealthiest form. I don’t spend any time in front of the mirror nor do I take selfies often for this reason.
I don’t dwell on it. I don’t lose sleep over it. It doesn’t plague my self esteem. I just don’t like what I see, so I don’t look.
Recently I’ve started purging clothes again, as the tank tops I live in are a struggle when I have elbow sores or my shoulders are hurting. They also put my skeletal upper body on display. When I was healthy and had awesome shoulders, biceps, and traps, I was proud of that work. Now, there’s not a muscle to be found. You can’t miss my collar bones, the joints in my shoulder, my shoulders blades, my vertebrae. It all just sticks out.
So, newer functional shirts that will still be cool and airy in the Florida heat AND hide the things I don’t want on display were in order.
I got lucky!
The first time I tried this shirt on, I cried. Cried, y’all! Happy tears for once. Over a shirt. This shirt gives me all the feels.
The sleeves and flowiness of it make it an airy, cool replacement for tank tops. It’s stretchiness makes it easier to get in and out of. In the winter I can layer it over long sleeve tees or under a cardigan some bigger sweaters I have. I can dress it down around the house. I can pair it with a skirt or dressy pants with accessories and dress it up.
It disguises my skeleton frame. It didn’t make me want turn away. I didn’t see my dad. It made me feel recognizable as a female.
I’m confident clothing is a big struggle for a lot of folks in our tribe. It’s a struggle for a lot of people in general. I’m sorry. I wish THIS was not something that we struggle with. I’ve learned to put a positive spin on the constant changes to my wardrobe and instead of getting upset over the “wasted money”, I get joy in knowing that I’m helping struggling woman - as the things I get rid of get donated to women’s shelters or veterans organizations.
So, this week, I’m happy for this new clothing find. It is EVERYthing I need in a piece of clothing right now. I will likely buy it in every color. I’m a simple girl like that.
Persevere. Rock on.
Monday, September 28, 2020
Tuesday, September 15, 2020
QUITTING IS FOR WINNERS! - It’s Not Failure. Its Not Giving Up. It’s Acceptance, Letting Go & Moving On
In this day and age where someone is in our face all the time, pushing us to keep fighting, don’t give up, you have to go all in if you’re going to be a success, and don’t you dare quit ... I call bullshit. Bull. Shit.
That may work for some people. It’s NOT for everyone. And just because you’re not logging miles or hours at some fitness activity, eating every calorie like a rabbit, living zen 24/7, maintaining a spotless life, or nailing some extracurricular activity does NOT mean you are a quitter, you’ve failed, OR that you’ve given up - at least not in the connotation that those phrases are typically used.
First and foremost, let’s remember that, if you’re reading this, you likely have Scleroderma. Or some chronic illness. This immediately changes the playing field. You are working with a body that may be at a disadvantage from the get-go of this conversation. Most coaches and influencers are not. If they are, GREAT, I applaud them, and yet, we are all working from different abilities, so, we can NOT compare our progress, success, or “failures” to theirs. We shouldn’t anyway, but it’s a fact of life that we often do. So, I will repeat that for the folks in the back ... stop comparing your progress, successes, and “failures” to anyone else.
Now, though I’ve said we are possibly working from a disadvantage does NOT mean that we should throw our hands in the air and just give up. We should not allow our Scleroderma/chronic illness and in turn disadvantages to paint us as victims. We might have disadvantages, but playing victim to them does us no good either.
A few things stand true across the board:
1)we need to eat a healthy diet
2)we need to move our bodies
3)we need to de-stress
4)we need to practice self love and self care
Does that mean we can’t have a dessert occasionally? No. Does that mean we need to run for at least 30 minutes a day? No. Does that mean we don’t get pissed off from time to time? No. Does that mean we get bubble bath time every evening? No.
A few OTHER things that stand true across the board:
3)our bodies change and/or dis-ease can happen
4)nothing is constant and lasts forever
Keeping those last four points in mind, even just from the standpoint of a healthy body ... what we could once do, may not be something we can maintain ten years down the road. Maybe our bodies have changed. Maybe our minds have changed. Maybe an activity that once felt good physically, no longer does. Maybe an activity that once felt good mentally, now brings dread or anxiety.
Now, keeping those four points in mind, maybe, we’ve developed a dis-ease that has altered us physically, mentally, or BOTH. Maybe, due to that, activities that once made our bodies feel good, no longer do. Maybe, due to that, activities that once brought us mental peace are now physically challenging and only bring pain and anxiety.
Healthy. Dis-ease. Advantaged. Disadvantaged. The second four will ring true for us all. There’s no way around it. The key is to acknowledge the changes. Feel the emotions that come with them. Feel loss. Grieve that loss. Be sad. Be angry. Experience it all.
Then, accept that things are different. Don’t see it as a failure. Don’t focus on what you can no longer do or “have”.
Find a new way. Find a new “thing” or activity. Maybe less intense. Maybe nothing to do with the original at all. Variations. Try. Adapt. Say “this” just isn’t working and try something new.
Admitting and accepting that we can’t do things we once did, doesn’t mean we quit or that we’ve failed. It means we’re letting go and moving on. Just because we CAN do hard things doesn’t mean we HAVE to do everything that’s hard. Letting go and moving on is going to be FAR better for our health, physical AND mental, than getting stuck being a victim behind what we could once do.
Doing all of these, then allows us to get back to the first four more fluidly and authentically.
I got a horse. She was meant to be my therapy. I planned to ride her. Riding is no longer a safe option for me. Guess what? I STILL have a horse. She is STILL therapy, just in new ways.
I used to hike. I used to enjoy long nature walks. Today, my feet hurt in ways that can’t really be fixed, so, I’m planning to start “vanlife” where I can camp, be in nature and not on my feet for hours.
I used to work out at a gym. My hands and feet make that a challenge. I’ve created tools and found variations to still move my body. Yoga. I can do on my feet, on the floor, in a chair, or on my bed. Resistance bands and “pedals” allow me to keep moving from a chair or my sofa.
I used to create glass art. I used to make jewelry. I used to make handmade holiday cards. I used to scrapbook. I had tools to make these hobbies easier, but eventually the activities brought me more anxiety than joy, so I opted to accept that and move on. I donated my paper art supplies to a library kids program. I gave all of my jewelry supplies to a friend. I am giving all of my glass and tools to a new student at the glass shop. Passing these on to new folks so they can see new life feels good. It’s helping to foster someone else’s creativity. I’ve discovered that some of the paper crafts can be done “digitally” allowing my creativity to still flow. I’ve accepted that glass art and jewelry making are no longer in my abilities. Jewelry is now purchased from Etsy or when I travel. Glass art is purchased from local artisans when I travel, too - someone is always making beautiful things, I’m happy to support them, to be supporting a small business and again, fostering someone else’s creativity.
I’m a hobby photographer. When my camera equipment became cumbersome and dreadful I was angry. I was heartbroken. Then, after some time, I decided that it’s not about the equipment that I use, but how I see the world. Ansel Adams was a great photographer, with “archaic” equipment. I gave my equipment away and now I shoot strictly from my iPhone.
My list goes on. Most of it is chronicled here, or on my social media accounts. Once I either find a variation or flat out drop the activity, accept it and let it go, my stress reduces and the future looks better. Have I quit some things? Yep. Have I given up some things? Yep. But let’s not look at it from that lens. Instead, let’s see it as accepting, letting go, and moving on.
This, after all, is how we persevere. How we rock on.