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Today on the Days of our spoons

(This was written on May 25. In true spoonie fashion, I haven’t been able to edit and add graphics before now. Decided to leave it as is due to the series it’s introducing.)

I’ve been making a concerted effort to share my cancer story as a spoonie, because when I have it in the past, new cancer patients and their caregivers  have found it helpful.

Now I also think all of us who are able to speak out in the community of the invisibly and chronically ill should. This post is both about what’s up with me, and why it’s important our stories are told.

There’s been a lot going on in my life lately.

So much going on that I’m torn with guilt stopping to write about it. But I’m at the point where not writing about it is leaving me with almost an unbearable level of anxiety.

In 5 days, my sister and I are leaving a 4 bedroom single family home with a complete basement in Maryland to move to Texas for a house that’s not even ready for us.

I didn’t have much say about the move.

My lovely caregivers are moving. I can’t live by myself without my caregivers yet. Therefore, at least temporarily, I am moving.

Once I’m better though, they’ll help me move back to Maryland if that’s what I want. I’m hoping for October, but as a spoonie, I know there’s a possibility that I may not be able to live on my own that soon, post-cancer, mid-new-diagnosis.

So it’s not like I’m being dragged kicking and screaming against my will. It doesn’t feel like that any more but it doesn’t make it feel any less chaotic.

I’m a bundle of nerves, which is ironic since damaged nerves are a major source of pain for me.

There are many reasons I’m anxious right now.

Though I’ve never lived in the area of Texas we’re moving to, the last time I lived there I was engaged to someone who had become abusive.

Never liked the political environment in Texas.

Almost none of the social services I rely on here exist there.

I will have to change insurance again, possibly to private insurance, which will also mean at least $1000 a month in the expenses that won’t be covered.

I’m so nowhere near packed.

I have a plan to finish my room today, a plan I’ve had for two weeks, that I’m a week behind on.

The charity pick up is in the morning and I am not even close to ready for them.

It hurts just to exist lately.

The spinal issue has new activity – according to the most recent scans, things are happening on the left side, when all my issues are on the right.

I can’t get in to see a doctor for the recently diagnosed rheumatoid arthritis.

My aforementioned nerves are all over the place.

Suffice it to say I’m not super-thrilled about moving.

I’m going to try and like it though.

My very hardest, because with much conversation, my voice has become part of the discussion on how this move can benefit me.

I get a break.

I’ve only kept one client and it’s the only one I’m working on in Texas.

This will give me time to rebuild my product line, possibly into the group consultation/membership package I’ve always wanted to offer.

My other mission in life, even before I rebuild my product line though, is to figure out ways to help the cause of other invisibly disabled people like me.

Particularly how to help them make an income that doesn’t affect whatever government assistance they’re getting right away.

It’s a shame that here in the States, help in hard times is designed to keep you on it forever.

If you find a way to get income above what the government gives you(gives back to you really – even poor people pay sales tax), instead of phasing out the safety net, it’s ripped away.

So if you were getting $1100 a month- a paltry no-bill-paying sum you can get PER MONTH if you are lucky?

And you find a way to make $1100 a month in salary on your own? You no longer get the other $1100 a month in government help. It’s like being penalized for getting your shit together.

Can you imagine working hard, getting a promotion and then your boss says “great job. Now give me half of your pre-tax money?”

$1100 a month doesn’t go very far, especially if you have family to feed. But if you’re single & somehow qualify for that amount?

That’s

  • A month’s rent of a room in someone’s house, ($500 with kitchen privileges in a less than decent Maryland suburb of DC)
  • one Uber trip a week ($100, a paltry sum if you have to go to the doctor three times a week and don’t drive)
  • a monthly bus/rail pass (in DC area, that’s $237 for a 28 day pass IF you already have the $10 SmartTrip card. MetroAccess is half the price and will take you door to door but good luck spending twice as long getting everywhere forever.)
  • Did you want to eat too? Let’s pretend you can eat HEALTHY food on $100 a month, or that you opted for MetroAccess because doctor’s visits in your parallel universe don’t charge for lateness or you can’t work because you’re on the bus all the time. And so have extra money to eat.)
  • Not on Medicaid? All the rest of your cash is now gone to copays and prescription drugs.

Hope you don’t need the internet, a cell phone, cable or entertainment other than Netflix, to have a little fun, or to have a job or a life or friends and all that.

So you see what I’m getting at. $1100 a month is nothing. $2200 a month for a single person is at least above poverty. But it’s like you’d be penalized for showing initiative and wanting to do for yourself.

That’s why I never took anything from the government I don’t absolutely need to- too many strings. I’d like to be able to show others who can how to thrive financially without their help, and to give others who can’t yet hope.

There’s a lot going on in the world of the invisibly disabled, too.

With our health care possibly disappearing and the truth about how the opioid crisis affects us not being covered, perhaps until it’s too late even for normal people who need more than tylenol after surgery?

There needs to be an organization that advocates for us, in our voices.

(Here’s how to help now, please do if you care– be sure to follow the entire thread of instructions.)

 

We need more doctors on our side.

We need to be able to advocate for ourselves too, which is hard to do when just being sick takes up all our time. Probably what makes us easy targets.

That starts with telling our stories. If we don’t talk about our illnesses, people don’t know what invisibly happens to us. And our causes go by the wayside.

Not everyone will be able to do a blog post, a podcast, to share on Facebook, do a short live or YouTube video, or even tweet.

But if you can, when you can? Please do. Maybe if we can start there, we can make a difference.

Starting today, whenever I can, I’ll tell mine here.

When I can’t, I’ll tell it on Twitter or Slideshare & copy it here as a Storify post when I’m better.

If you want me to share your story, use the hashtag #myspoons and I’ll add one of your posts to my periodic roundups.

2 thoughts on “Today on the Days of our spoons

  1. Tinu,

    Thank you for sharing – on so many levels: Just doing things, the finances, the political climate and how it makes a difference for you – THE MOVE….and everything that it means, or may mean.

    There is nothing to “make it all better” – change is scary. Lack of control over your environment, new people, new everything. It is weird that it’s Texas given your history. I secretly wonder: Will you be the one in control now? To go back and give the proverbial middle finger? Curious to track your journey (THE word everyone keeps saying these days, along with “narrative,” “pivot,” and “wireframe.”)

    I so want peace, a mental break, and comfort for you. I want Texas – somehow – to be a great experience and a relief instead of a stressful experience. I am putting these vibes out there for you for a silber lining my friend. Xo

    • Thanks bunches. Now that I’m here I’m adjusting well. I’ll share that momentarily.

      Ironically it’s not the change that was the problem. It was that as a grown woman in her 40s? I wanted to either have an equal say in the change or not feel like I was working myself to death paying for so much of other people’s dreams.

      Change is not comfortable for me. I freely admit that I have more problems with it than other people.

      But I also have endured more change in the last 5 years than most people in their lives.

      Actually I think this part is a blog post & I’ll write about that next.

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