I started writing this post… and I went to look something up…
Then I came back here… and I felt a wave of guilt…
As tho we had been on the phone together and I stepped away…
Left the phone on a table and forgot about our exchange…
What’s even worse…
I forgot what I was going to post about…
I figured, more than a poem today…
Why not right…?
Well… here we are then… I’ll call you back lol…
What was I saying?
It’s been going on 17 years now, since I was diagnosed with a rare, & so far incurable disease.
It all started off with a burning ache in my knees, and built up to an arthritic ache in most of my joints, accompanied by a lingering fatigue and brain fog.
Many months later: my ankles became disturbingly swollen and hot pink welt-like bruises developed on my calves and shins.
Lots of doctors and appointments later~ I found a physician that knew what was going on and how to begin to turn things around.
It all stemmed from an extremely low vitamin d count in my blood- they say normal low for New England is mid to low 20s, and mine was 4.2…
It took 5yrs to start being able to count more than a few days in a row of feeling better.
Winter is would always be the hardest time physically ~ there has only been one. Just one winter, where I could make it to mid February without feeling the aches, brain fog, dizziness etc…
My immune system let’s me know in no uncertain terms that it’s crunch time by exhibiting symptoms at will.
These lovely moments come on sometimes in the guise of the aches and fog, but sometimes in my hands shaking and my skin breaking out in bits of viral pustules (really charming). These skin viruses are no bother to most healthy bodies, but those of us who live compromised… we’ve been there, done that.
Now that we’ve been through the second year of living through this pandemic… I’ve had to adjust, and rely on my ability to entertain myself, and put my artistic body back to work.
The stress of the baseline situation is felt in my bones, my lymphatic system is taxed, inflammation is high, and symptoms are apparent. There isn’t any comfort, or reassurance in the fact that I’m vaccinated and boosted. And my doctor RETIRED in November of 2019…
Imagine having a weird immune system during a pandemic, and your only option ~ so far~ for doctors has no clue… they don’t specialize, not their fault. Also not helpful in much more than offering up the latest pill or prescription.
And there’s the guilt! Omg! Heavy, overwhelming, gloom and doom guilt! When your watching everyone on video chat have together times… and the risk assessment is too high… it’s heart breaking. But the hospital bills, or long haul scenarios are too unbearable to think of…
No! Let’s not talk about my loss of identity, when I essentially had to chuck my business I’d built since 1997… when the last client I had back in March of 2020… I had been telling everyone to be sure they had no symptoms or exposure before coming to the home studio… she said no… then told me as her hair color was just about all applied that she and her husband were exposed at a party just a few days prior and her husband had run a fever…
And then the country locked down…
I’ve scrambled since, to gather ppe, make areas outside to do haircuts, and one thing or another put those plans out of wack.
That stress put my body in crisis mode and the sciatic nerve situation began.
It only began to loosen when I told people that I would have to be permanently pausing my attempts to get back to styling.
I was essentially crippled for an entire year.
Now I rehabilitate…
“But hon, you need a physiotherapist”
You may think that, sure. If I hadn’t already been trained in what’s screwed up in my physical being. And the information is out there. How do you think the physiotherapist learns what they learn… and you can ask what ever you want and find whatever info exists. Get base knowledge and build on it- and never take risks, ok…
In essence ~ I’m rebuilding on many levels ~ from what feels like scratch. I’ve currently no income, ad sense might be able to pay for my therapist sessions soon, so that’s a relief. Mental Health is dreadfully important currently. If I wasn’t so intent on finding out ways to quell the heaps and swells of inner child- past trauma- shadow work that have been my mind’s favorite hobby during this time… I’m not sure where I’d be. Existence would be the least tolerable thing, if I hadn’t been willing to find a path through.
My poetry, I have been writing most of what you’ve seen here since 2012 and on… just putting it in the banks so that it needn’t take up space in my head…
My painting, what I’ve always wanted to do… and I’m endlessly grateful that I’m beginning to bring joy to others with it through my YouTube videos.
I will be constructing a new studio space in our house, so that I can set up and not worry about our occasional quarantine situation ~ impeding my being able to have access to where I’m set up.
A nice bit of organizing as well, high I love!
And I know I have many questions coming in as to how I am able to stand not getting out and about.
It’s simple ~ I don’t want to be any sicker than I already am. I would much rather go without. The meaning is deep for me. We can always reach out through the internet, get take out, watch movies here. And it’s not becoming any easier to envision going back out into public when the current daily infections for Massachusetts is over 16,000. Resulting in over 100,000 current active cases…
I’d rather have the whole thing done and over… wouldn’t you?
Anyway ~ this is long enough…
Look for more poeems etc… posts about the studio, and the next gardening season- CANT WAIT! Can’t wait to see what new plants come up this year- as it will be the first year anniversary of us removing all of those huge pines that sucked the ground dry… things are emerging out there! So exciting!!!
Well- happy new year…
Btw- I’m not editing this post- let’s keep it raw kk
J-
