In the Face of Failure

Content Warning: Hard truths about MS, Psoriatic Arthritis, Ankylosing Spondylitis and physical losses associated with them

Mavenclad failed. My neurologist won’t say it, so I have to. It is difficult for me to write this because recent changes in my disease progression scare me. I’m not angry. I’m nothing. I want to rage against the further loss of my ability to walk. I can’t tease out which autoimmune condition is causing what. I actually think they are tag teaming this one. The Psoriatic Arthritic hip and SI joints are causing spasms across the SI joints and upper thighs which eventually collapse me – yes it would be “falling” but I’m usually not far from a chair, or I’m spending more time in my wheelchair because I have no choice any longer.

I’m losing sensation, mostly on my left side. I had a small 2nd degree burn on my left index finger from accidentally connecting said finger with a mental baking sheet from a 425°F oven. I felt the initial burn, but I did not feel the pain from the actual burn afterwards at all. It was the weirdest thing. I’ve burnt myself cooking many times. I’m somewhat klutzy in general, always have been. It’s not uncommon for some kind of accident in the kitchen – I have a saying for any project I do “If I don’t bleed at least once during the creation process, it won’t turn out.” Not feeling a burn is a dangerous thing. I have a naturally high pain tolerance, but that doesn’t mean I don’t feel it. It just means that I don’t acknowledge it until it becomes incapacitating and even then I stand up and push on. I’m waiting for an MRI that includes my Thoracic Spine to see what’s happening. I rarely have changes on my MRIs my existing lesions are in areas that also explain what is happening. Secondary Progressive MS is a constant acceptance of loss.

It’s not all bad news. I think I have found an Arthritis treatment that seems to be working. Took longer than I expected to get the GI issues to calm down. They were uncomfortable and I almost quit on Xeljanz because of it. I am waking up with what I consider to be background pain that mostly goes away after I get moving – except that back, hip combination which tries to floor me, literally.

I am beyond fortunate that I have been able to afford a new powerchair that will accommodate any and all changes that I am now experiencing and I am excited for the arrival of my new chair. It will be “fully loaded” – all of the bells and whistles so to speak – except maybe the ability to have turn signals – I don’t think it will come with that. I didn’t specifically ask for that. Mine will be in Aqua – it was such a difficult choice. I almost chose the Canary yellow. I will be able to move up to counter height, tilt forward for extra reach of shelves in fridges or to fit my legs under tables. I will be able to tilt and recline and adjust my chair to the angles I need to make space in my ribs so I can breathe easier (spasms and pain from Psoriatic Arthritis and hypermobility are the cause) . It will be a chair that supports the new Me, and future Me for quite some time. Still have to file the paperwork with my insurance company and we’ll carry some debt for awhile – but I won’t have to add anything other than seating changes as long as I maintain the electronics. My current chariot will be kept for rugged yard work – or camping. I will clean it up and likely donate it if my new chair proves to my husband, D, that it is a viable replacement – he’s not convinced because it is a mid-wheel rather than a front wheel like my current chair. I wanted something more house friendly since I will be spending a lot of time sitting in it.

What can I say, 2020 hurt us financially for awhile, but we’ve clawed our way back. D’s job was dicey, but they’ve managed to survive, and he’s back to full time work. I’ve been able to restart my membership with the MS Gym . I haven’t been able to find anything that equals it for explaining the importance of exercise nor breaks the exercises down into manageable chunks. While I was unable to afford the program from almost a year, I kept trying to find something free, or working with physical therapists or occupational therapists and nothing has been as good as the MS Gym. I’m working through the Reconnect program to fight as hard as I can to not lose more. Trying not to lose hope and keep plugging a way.

I spend a lot of time feeding the birds. D helped me plant all of our gardens this Victoria Day weekend. I can’t wait to see all of the little seeds sprout and the seedlings we’ve planted grow larger and produce fruit, but that’s another post. These keep me connected to the joy of life in spite of the hardships of a failing body. The past few days have been hard for me because I’ve been slapped repeatedly by my limitations that are a result of disease progression and not a lack of effort. Today I am down. Tomorrow I get up again.

Who am I?

I like structure. I do not like being controlled.
I like freedom. I do not like choice without context.
I love Astrology. It’s not about prediction; it’s about self mastery. Individual connection to the Universal.
I love technology. I fear unfettered surveillance. Where’s the balance?
I’ll stand shoulder to shoulder on the battlefield. I’d rather meet you around a campfire to settle our differences.

I was born under the sign of the Sun. I prefer the conversations held at night and relish darkness.
I’m Autistic. This is not a flaw. It’s a different approach to Life.
I will walk beside you unflinching when you share your darkness and need a friend.
I’m peace. I’m warrior too.

I’m kindness.
I’m action.
I’m creative.
I’m mystery.
I’m hard to know.
I’m hard to shake in spite of the Anxiety that grips me frequently.

I’m peacekeeper. I can be peacemaker.
Light and shadow.
More silence than noise.
I am open to change
I am memory and forgiveness

I am Echo. This is who I am.


I Can’t Hang The Sun for You Today

I can’t hang the Sun for you today
I can’t be the light that guides your path
Today you have to be your own Sun or
you get to walk in shadows and find your own hope
This will make you stronger, I promise

My Sun is hidden behind clouds today.
I have walked in shadow before, many many times
This has made me fearless, and my dear that is my hope for you
I know this space, this grey, this pain, this sorrow, this struggle to find light

Except today, I find I don’t mind the grey.
I don’t mind the mists, the fog, the shortened sightlines, the mystery of the path ahead
I don’t need hope or strength or guidance
I just need to breathe and place one foot in front of the other
Eventually a bench, or chair will appear where I can rest easy wrapping this grey blanket around my shoulders until I am restored to being the Sun for you again.

The Sun always emerges from the clouds
I too will Rise again.