I Did The Thing!

Art, art is the thing. I went out and got a little watercolor palette and some brushes. My drawing skills have atrophied a bit since I have almost exclusively been working in textiles for the past six months. I really enjoyed getting back to drawing and painting today.

Here is what I have done so far:

[image description: watercolor of a green snake plant in black planter and an ink drawing of the sheep bug fairy from Ancient Magus’ Bride]

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The Need to Feed My Artistic Spirit.

I haven’t been doing enough artwork lately. I have lacked the inspiration and motivation to do so. I *want* to do artwork, but every time I pick up a pen/brush/sewing needle my brain just goes “uuuhhhhhh, sorry boss, I’ve got nothing.”

Excited for the painting class I will start taking next month. I haven’t worked in a two-dimensional medium in awhile and I think switching things up will be good for me. Also, I always feel better around other artists because we can bounce creative energy off of each other. I know the teacher of the class well and have taken classes from her before, so I know I will enjoy her instruction.

Been thinking about starting an art journal. I have always been a journal writer, but usually it is just pages upon pages of endless handwriting. I feel the urge to try adding some watercolor to my journaling. Haven’t used watercolors in a long time. I would have to go buy a watercolor palette, some paints, brushes, and the right kind of paper. Maybe later this week I will make a trek out to the art shop in Berkeley that I like. I might order the palette online because there is a very particular style of palette that I want.

Depressed? I guess?

It isn’t that stereotypical “sad and crying all the time” depressed that people without depression imagine. It’s that “emotional equivalent of watching paint dry” kind of depressed where you don’t enjoy all the things that you usually would and so you kind of just space out and go on autopilot through everything.

Doing volunteer work twice a week and exercising at the gym a few times a week had been making me really happy. It made me feel capable and like I was contributing something.

About a month ago my pain got worse and I had to take a hiatus from those activities. I was hoping I would only need to stop for a week, but it is taking longer. I am back in physical therapy and getting my joints realigned is going to make my pain worse before it can get better.

I guess it all just has me feeling despondent about the future and what kind of life I will lead if I never get to go to college or have a career due to my health. I know I will make things work no matter what, but I am feeling down about it anyways.

Probably also doesn’t help that I have my yearly Marfan Clinic heart check up coming up on March 7th. That’s the appointment where they take an echocardiogram of my heart and tell me whether or not my aorta has dilated further. So far, the past two years, it has stayed the same size; just slightly larger than normal. I take my meds and avoid lifting heavy things. However, I have been trying to be more active in the past year and I am nervous that it will have made my aorta enlarge. If it ever gets too large I will need open heart surgery. I have accepted that I might need that surgery someday. Doesn’t mean I am super stoked about it though.

I just want to get the appointment over with so that I will know how my heart is doing and if I need to change anything in regards to treatment.

So close to deleting this post before I even publish it because I hate how mopey it sounds. Only publishing the blog posts that end on an upbeat note would be censoring myself and painting an unrealistic portrait of what living with illness and disability is like; so it gets to be posted.

Ramblings/Life Update

*in radio advertiser voice* “Today’s blog is brought to you by brain fog! It’s like a Winter morning in San Francisco, but a lot less pretty…”

I’ve been in a pain flare up for the past several weeks, which hasn’t been fun, but I am coping. I started seeing a new physical therapist who is trying to get my joints back in alignment and loosen up my tight muscles.

The way she explained it is that my muscles are trying to overcompensate for my weak joints and that is why they get so cramped up. My muscles have been tight my entire life, so I don’t know what it feels like to have muscles that aren’t constantly in knots.

I wish my house had a functional bathtub that I could take epsom salt baths in when I feel like this. Unfortunately, our’s makes water drip into the foyer whenever we use it, so we use the downstairs shower. I do have a nice shower chair at least.

I could start seeing a massage therapist, but I doubt that is covered by Medicare and I don’t know if I can fit it into my budget. I will look into it though. I have a friend with Lupus who sees a massage therapist locally. She is on a fixed income like me so I can ask her how she pays for it.

I have had to take a break from my volunteer work during this pain flare up, but I hope I can return to it soon.

Still no college for me either, but I am not giving up on that dream yet. Maybe once I get a service dog it will be easier to give college another go.

I am on the wait-list with CCI for team training. When my turn comes around I will go live on a CCI campus for two weeks to get matched with a dog and train with them. It will be exhausting, but hopefully at the end of it I will have a dog that can stick by my side and help me gain a little more independence. No idea when I will get the call. Could be any time in the next year and a half. I have a feeling it will be some time in 2018, but I could be wrong.

Haven’t started archiving Dad’s photos yet, but I will once I feel a little better.

All in all I am doing okay:

  • I have great friends and family who are always there for support.
  • J is as sweet and caring as always. We’ve been together for seven and a half years and have lived together for almost a year.
  • Ollivander remains my devoted feline companion. He is snuggled up next to me now as I type.
  • I am signed up for a painting class at the local art center starting next month. It has been a long time since I have taken an art class, so I am excited for that. The teacher is an old friend of mine and I have taken classes from her before, it will be nice to see her again.
  • I have a car and wheelchair that are both 100% mine that help me to be more independent.
  • I am getting pretty good at machine sewing considering I have only really been doing it for six months!
  • Some friends of mine are getting married next month and I am going to help them make some of the decorations!

[always nice to reflect a little on things that are going right in my life. there is more to my life than my illness and when it knocks me down like this it is good to remember that I do have good days and this pain will go back down to a more manageable level eventually. it is okay to get frustrated and sulk a little sometimes, but then I have to pick myself back up.]

Archiving Dad’s Memories

My mom recently had to clean out the garage so that we could get the old, rotting ceiling removed and clean out the attic space above it that had been home to a colony of rodents. While sorting through all the boxes and bins that have accumulated over the years Mom found an old box of photos, cards, and letters that Dad had saved; spanning from around 1985 – 2008. My dad passed away in a hiking accident when I was 13 years old (2009), so any memorabilia from him is very precious.

Looking through the box tonight we couldn’t believe all of the stuff he had saved. I found a birthday card that my best friend had made for him when we were in kindergarten! She is still one of my best friends now so I had to text her a picture of it. He also saved the ticket from the jazz concert that he took my mom to on their first date back in ’89. Lots of letters from his friends and cousins too. Even a card that his brother (who has also passed away now) wrote to him.

There are hundreds of photos in the box, many sorted into labeled envelopes in Dad’s neat, printed handwriting. They document trips he took with his friends and siblings as a young man, family gatherings, his business trips that took him around the world, the early childhoods of my siblings and me.

I am lucky that I have a ridiculously good long term memory. I can still remember things from back when I was two years old! I can still remember the events during which a lot of those childhood photos were taken. I can still remember those good years with my dad. I think that maybe my brother doesn’t remember those years as much, which is sad.

He loved us, he cared for us, and he taught us about the world. It wasn’t his fault that depression sunk its claws into him in our later childhoods and early teen years, taking away some of his vibrant spirit. There was a time before that, when he was happy, when we were all happy. That is the time that I choose to remember and that I want to make sure stays documented.

Anyways, the point is, I have a new project to work on! I want to archive all of this stuff. Scan it all into a computer and put it on discs to distribute to family members. My aunts, uncle, and grandparents would especially appreciate it I think. It’s important to keep a record of when he was still so vibrant and full of life.

Will post updates periodically about how this endeavor is going. We are hoping to go back to Illinois to visit family in June, so maybe I can try to have it ready by then.

#BuildALadder

Martina Stawski is my role model for doing my best to live well with chronic illnesses. She, with her husband Simon, runs the YouTube channel Simon and Martina along with the EatYourKimchi website. The two of them are Canadians that have been living in Asia the past ten years; first in South Korea for eight years, and now in Japan for the past two. I have been subscribed to their YouTube channel since 2015.

Martina has Ehlers-Danlos Syndrome [EDS], a connective tissue disorder that affects the way the body forms collagen. It is related to (but not the same as) Marfan Syndrome, the connective tissue disorder that I have which affects fibrillin. Martina deals with chronic pain, fatigue, and joint dislocations on a daily basis. She manages to travel the world with Simon creating hilarious, beautiful, informative, and often mouth-watering videos.

It isn’t easy for her to do, and she often pays for it with increased pain in the days after her adventures, but it is what she loves. She says she would still be in chronic pain if she just stayed at home all the time and then she wouldn’t have all the awesome memories to sustain her on her darkest days. She uses those memories to ‘build a ladder’ to help her climb out of the pit of depression on her toughest days. Along the way Martina has inspired many people living with chronic illnesses, including me, to do the same. She emphasizes that it doesn’t have to be big things like going on a trip. There are little things we can do each day to add rungs to our ladders.

Since Martina made the video “An Open Talk About My Depression” last February, in which she first shared her Build A Ladder philosophy, I have really taken her message to heart. I give her some of the credit for my quality of life having improved in the past year. I don’t think I would have accomplished as much progress without her as inspiration.

Martina, if you ever read this, thank you. I have talked to you in the comments section on YouTube and Instagram on many occasions, but I just wanted to do a little write-up about you on my own blog so that maybe people who haven’t heard of you can find you and hear what you have to say. ❤

How I Avoid Losing My Mind When I Can’t Leave The House.

No matter how much I improve I will always have days where I can’t leave the house; sometimes not even leave my bed. I’ve accepted that probably won’t change any time soon. I am just grateful that I can go out more than I used to and that I can drive myself.

However, it is very easy for me to slip into a state of depression if I am in the house for a few days at a time and don’t make the active effort to occupy myself.

So here are some things that help me:

  • My cat, Ollivander. Having the company of a four-legged friend always makes being stuck at home way more pleasant. Ollie is an expert snuggler and is very devoted to me. I am so happy that I adopted him back in 2013. When I am at home he rarely leaves my side.
  • Comfy bedding! I burrow under blankets when I am feeling worn out. My fleece blanket that I made myself and my Sunbeam electric blanket are my favorites. I use my electric blanket as a whole body heat pack when my joints are bothering me. I also recommend a memory foam mattress topper if your joints need some extra cushioning.
  • Crafting supplies. If I am really in bad shape I won’t even have the energy for crafting, but most of the time I can manage it. Making things with my hands has always been something that helps preserve my sanity when I am stuck at home. Back when I first got really sick ten years ago was when I vastly improved my knitting skills. Recently, I have been teaching myself to use a sewing machine.
  • Internet access. Even when you are stuck in bed, if you have a wi-fi connection you can be all over the world. I am on my computer quite a lot. I prop myself up on pillows, place my laptop on my little lap desk, and then I can get all sorts of stuff done from the comfort of my bed. I use the computer application F.lux to tint the color of my computer screen. My eyes are very sensitive to certain kinds of light, so being able to tint the screen an amber color is very helpful in preventing migraines. I have to have the brightness on my screen turned all the way down AND have F.lux running in order to be able to look at the screen.
  • Video Streaming Subscriptions [i.e. Hulu, Netflix, PBS] I haven’t had cable TV in my house in years, and I am totally fine with that. I have access to several different streaming sites and therefore enough shows and movies to keep me entertained indefinitely.
  • Switching up locations in the house. Sometimes all I need to improve my mood when stuck at home is a little change of scenery. If I have been in my room for too long I go downstairs to hang out in the living room for a bit. I usually use a big canvas tote bag to carry whatever I might need down from my room with me so I don’t have to take multiple trips. Stairs are my sworn enemy so I try to avoid going up and down them more than absolutely necessary.
  • Books. I do not always have the mental energy and focus required to read books for hours on end like I used to. Over the past couple months I have been getting back to reading books again, even if it isn’t at the same ridiculously fast pace as before all this. I have a rather large collection, so I always have something to read should I feel like it.