Finding Purpose in Interests Within My Abilities

While I was planning to do so many things with my life right now, I’m always adjusting to work on plans that are both optimistic and realistic.  Some of my favorite interests, namely craft projects, are on the shelf until I’m ready to pick them back up, but I have new stuff going.  I started with this Blog, which has been great for me- it’s nice to have a place to process my thoughts.  I also love being creative and helping others, so I have two new projects going!

I recently started training with Dysautonomia Support Network to be a volunteer.  This organization is made up of amazing people who are kind, supportive, and enthusiastic.  I can volunteer with a minimal time commitment and can do things from home on my computer.  They are very flexible and understanding of health issues, so I think this will be a realistic and optimistic commitment for me.  I’ve done a lot of volunteer work in the past, especially when in the middle ground where I couldn’t work but wanted to be engaged, and have had a tendency of over doing things.  I am going to be very conscientious about pacing so that I can make it last!  I’m looking forward to learning more from training and to take on some responsibilities in the future!

My other project may be a bit of a long shot.  I love graphic design and I am beyond passionate about clothing design.  Since the days at the sewing machine are too hard right now, I took to the internets!  I started my own store through one of these online services that prints your artwork onto a variety of clothing designs.  It started because I wanted some new gear to wear for October- Dysautonomia awareness month.  I really wanted a dress or tunic, but couldn’t find anything like that, so I found a site with custom printed clothes made to order.  After I made one design, I kept going.  Now it’s the beginnings of a whole store.  My first design was inspired from my last blog post where I was comparing having POTS to being a mermaid.  That did the design in two color styles with mermaids, shells, awareness ribbons, and plenty of bubbles.  Then I did a spoon design inspired by spoon theory.  Then I even busted out the water colors and scanner to make up some awareness ribbons for yet another design.  I’ve ordered some items so far, but it will take a week or two for them to come.  I can’t wait to see how it all comes out.  If they are really nice, maybe this is something I could do more with.   I’m calling my shop Aware with Flair.  Here are some examples:



I can’t help but to notice everything I’m doing is now focused on my illness, at least in theme, but I am also doing so using skills and interests that are very core to who I am (before and after illness).  I always want to remember I am more than my health issues, but I am tired of hiding from them and couldn’t hide even if I wanted to at this point.  When I embrace something, I do tend to go all out.

In other news, I went in to get evaluated for a power chair today.  Turns out my insurance only offers scooters or self-propelled wheelchairs.  Plus, they only cover these for in home use, so if you want to leave the house you’re on your own? It was a strange experience.  There was a team of four people and only one, a physical medicine doctor, seemed to have some understanding of POTS and why I would need so much assistance with mobility.  In the end, they decided to give me a power scooter, but that will take some time to process.  It isn’t a very good fit for me because I can’t elevate my feet and it’s not very small or portable (though they claim it is both, lol).  I’d like to see how it goes before deciding to buy something out of pocket.

After my appointment, I went out with my mom, sister, and nephew.  We had a nice meal, then went shopping.  My mom pushed my transport chair and my sister pushed my nephew in a stroller.  They are so energetic and filled with laughter and sassy jokes.  My mom was really thoughtful between playful comments.  She pointed me towards things I wanted to see and asked if I wanted to go here or there.  It really meant a lot to me.  She also gave me a book she had made of photos from my bridal shower.  I try not to gush with how much I appreciate my mom and the support from my family, but it means so much.



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