Image

Angry & Stuck- the story of my chronic pain life & why I fight

When I let myself stop long to think about it, it’s not mere anger. It’s rage.

Slowly… simmering… rage.

The kind of rage that comes from believing in something larger than yourself, to naively persist and actually have it kinda work for you for two decades.

Only to come face to face with what feels like a conspiracy concocted specifically to kill you.

Of course, in my heart, I know that there has been no specific edict to take my life. That would be too swift and merciful.

But it is happening. Not just to me. To millions of Americans.

Yes, despite my “exotic” name, I was born here. (Pro tip: I’m not the exotic one if there more people like me than there are like you.)

By birth I’m a citizen. Same rights as anyone here in America.

But even skipping over the struggles of being a black person or a woman or black and a woman in America? I have many times over earned the basic human rights that should go with the simple act of being born human on earth.

Never mind in America.

Never mind a taxpayer.

Never mind a person who built a business, then another one, then employed people.

How my chronic pain life began.

When I was 23 years old, I was told I would be in too much pain to ever walk comfortably. That I would be in too much pain to get by without a wheelchair.

I believed that since I could walk, I should at least try to prove them wrong, for a reason I realize now was

  • not clear-headed,
  • tied to misperceptions,
  • and is ableist nonsense.

By rights I never should have pushed myself that hard. 

  1. Luckily for me? It worked. I had the proper mental motivation, crap though it was, I had a reason to keep walking.

My big reason?

That I didn’t really need the wheelchair, that it was just pain and I could tough it out.

Through some miracle, still in college and just past graduation , I found several ways to help relieve my pain.

I went hard. Years of physical therapy, switching doctors, a breast reduction. Hid the severity of the disease from my family.

By 28/29 it was under control. Or at least that’s what I thought until 2001. 16 years ago my pain went from one bad day every three months to daily escalating pain and discomfort.

It hurt to lay down. It hurt to stand. I got some relief from sitting. So I flung myself into work.

Until one day I couldn’t sit anymore either. 

At the time my business was part time. I had a full time job. I took long term disability once, increased my physical therapy. It seemed like I was making progress.

A year later I was out again.


12 weeks into my second round of leave, on the last day of the unpaid sick leave the Family Leave Act was supposed to give us, I lost my job.

No more disability payments from my job. 

No more insurance – what was I going to pay a $400 a month COBRA bill with? My looks?

It might have been as high as $700.

My memory is only clear enough about this point to know that I couldn’t possibly afford it on the 1/5 of my income that was left from my part time business.

And I had taken in a friend.

(I do that, btw. My whole life, I would just take people in, because that’s what my mother did. She is generous to a fault. So was I. For years, no matter how stupid the generosity was at the time, I often couldn’t see why I should say no until it was over. That’s important later.)

Not to say the friend was sponging off me.

She cooked all our food and cleaned because I couldn’t do anything housework like when I was down. She also co-ran the side hustle, doubling our income from it in the process. She was and is a great friend.

She convinced me to move to Vegas. There were jobs. The constant stream of conventions were great business leads.

Long story short, I worked for maybe two years, then my side income became higher than my full time income, at a time when work revoked my leave to attend my sister’s wedding.

I haven’t worked for anyone else since that day.

Eventually I outsourced to other companies. Hired temp and virtual workers. Assistants. A receptionist for an office.

All the while the pain kept coming.

It’s hard for people to understand how terrible it is to be in pain all the time.

In the past 9 years, I’ve had a handful of days without pain.

There was a one year period in the middle of what was becoming a great life in Vegas when everything fell apart.

Again. I made more money in a week than I had in the past five years combined. 

Most of it was seized, for a reason that would later be determined as bullshit. I’d worked really hard for it, 20 hour days. 

I worked in front of my computer until Ifell asleep. Usually I woke up in 4 hours and picked up where I left off. 

Eventually, I knew my body would pay.

So I’d planned to take a week off to recover from the grueling schedule I put my body through.

But after my money got stuck, not knowing at the time that it would be returned to me over the next thre years?

Between my broken heart, conquered psyche and stressed body, my system fell apart.

I ended up in the ER. I was put on oxycontin and flexeril. It fucked my head up. I was a zombie. All I did was eat and sleep. This lasted 13 months.

My first lucid moment after that year was revealing.

It’s hard to describe the year I was trapped in a mental haze. 

And even harder to convert how it felt to slowly come out of this fog and realize how much had changed in this lost year.

I had gained 100 pounds.

I hurt worse than ever, as the drugs wore off. And then I had to go through withdrawal, because I didn’t trust medication anymore. I felt like I was being shut up with drugs so I’d stop going to the ER to ask them to fix the unsolvable problem of my condition.

I later found out that in addition to the spinal disorder, not being properly treated for it had led to damage of my nerves.

The new problem would permanently cause more issues, in the form of unexplained, random pain, than the original one. It does to this day.

I went home to Maryland for my other, youngest sister’s marriage.

Note how everyone else’s life was going on.

All I had was my business, one that was on track to making me a millionaire until my money was seized. I had poured my romance-having, child-bearing years into it. No social life. Just pain and business.

All in the name of having enough money to pay for treatment out of pocket that could one day maybe mean an end to my pain. Which would mean that I perhaps COULD bear a child without ruining my health further.

By now it was 2007. I rested, detoxed, lost 80+ pounds. I restarted my product business. I saw the specialists I had back in the area. I even started to date a little. By 2008, I was back on track.

That summer I got a dream opportunity and a fiance. My income went up to double what I was making. I was working for someone I had admired from a distance ever since I started working online. It felt like a dream. He told me to write my own ticket.

I semi-retired, shuttered my business, made a plan to buy out my partners, and moved in closer to my fiance in Texas.

The fiance put his hands on me and stole the money from my opportunity. I was stupid enough to open a joint account with someone I thought I was going to marry.

I thought the first time was a misunderstanding.

The second time was a wake-up call and the reason for the fight.

By the third time I had fled and there wasn’t enough time to stop the money from going into the account.

There were things I probably could have done to stop it.

But you have to understand – I was fleeing like a thief in the night, with just a small suitcase, fearing for my life. And on top of my regular problems was the pain. Always the pain.

I came back home to Maryland. I left everything I owned that couldn’t fit in the decoy suitcase I packed to look like I’d only be away a long weekend to see my doctors.

Making it the third time since 2002 I lost everything I had and started over.

  • I wasn’t able to take most of my belongings with me from my first move to Vegas.
  • I lost everything once inVegas before the business took off, because I couldn’t pay for my storage container,
  • I left all my things in Texas to get away from my abusive fiance.

Somehow I got better. Somehow I got back on my feet. Things I lost? Just things. I stopped being attached to them. I got new things.

Somehow I rebuilt my business again- walking away from my fiance meant walking away from my business opportunity too, and starting over with just my reputation to build on.

Somehow, by 2010, I was once again making close to 6 figures. Not as much as I had ever made but I worked my way back to a reasonable life. I was even dating and had a social life.

My new friends were caring, and I disclosed my health problems once they saw me walking with a cane. 

I expected judgement but I got love. When they planned outings, accessibility for me was always a consideration. 

They were willing to give up convenience in the name of my comfort. I never asked them to, and most of them are still my friends until today.

Still? I hurt. Not as much. But out of pocket, my health costs were often about $4000 a month.

That isn’t a joke – some months maintaining my health cost me $4000.

I lived very simply to be able to afford my medical expenses. My only splurges were hotel stays that were near clients or had spa specials. 

I’d spend hours in a jacuzzi or whirlpool to soothe my nerves.I became really good at finding local specials and coordinating them with work or doctor appointments that were far from the house. 

There were months my medical expenses were only $2500. I’d skip physical therapy if getting a massage and spa package was cheaper. 

But there were also months they were over $6500. Change in medications. A series of nerve blocks or steroids shot into my spine.

But on average, it was right in the ballpark of $4000.

Because to be able to work in anything less than agonizing pain, I had to have

  • the physical therapy,
  • (lighter) medication
  • my chiropractor’s gentle manipulation,
  • his TENS unit administration
  • and massage rollers.

But even with the $4k a month in medical bills, I was able to have a successful business, and send money to Africa every month when more than half of my immediate family moved in 2011.

In May 2012 I ended up in the hospital again, completely stressed out, very close to dying of pneumonia.

The general consensus was that I wasn’t getting better from this severe bacterial pneumonia. They wanted to intubate, with a good chance of the tube never coming back out.

I was warned.

I was given an explanation.

STILL I PERSISTED.

I lived through that too.

(Obviously. Or how else are you reading this?)

I had a window where I could have gone on social security or federal disability back in 2002-2006.

Over and over again I was knocked down – like a lot of folks.

But I believed in myself, that I would get back on my feet without assistance even from my family.

And I did.

Now, I don’t consider food stamps and public assistance and all that a hand out.

You pay sales tax.

You pay income tax.

We pay into a system run by the government, the whole point is that if we all contribute, when we fall on hard times, as most people do, that the system we pay into is supposed to pay back out in the form of providing a safety net.

It’s what government is supposed to do.

It’s not coddling to get money back that you paid. Even if you’re poor you pay sales tax, because even poor people have to buy things.

Poor people who have wages also pay income tax, and like the middle class are taxed at a higher rate than the rich.

So that was never my reason for not using public assistance up to that point. There were two reasons.

  • I was still in denial about my ability to get better.
  • And I figured why go on assistance that barely breaks your fall? It doesn’t give you a living wage.

In my mind, that chicken change couldn’t even cover half my monthly bills, so it might as well go to someone who it could really make a dent with.

I had a system that worked, even though it cost a bloody fortune and took up 15 hours a week with travel, time when I could have been making even more money.

Figured I might as well leave those finite resources for people who have no choice.

All I wanted, all I ever wanted from the government was

  1. a real shot at having real health insurance
  2. basic human rights enforced for all people within its borders

Between the way my pain spiked after being in the hospital, and never quite feeling recovered from my stay in 2012 in general, I’ve never been as healthy as I was before that time.

I’ve occasionally been slimmer than my slimmest point. But my pain free days were mostly gone. I worked from bed every day instead of once a week.

At least there was Obamacare.

For me, the ACA meant that instead of paying $4000 out of pocket, because my conditions were considered “Pre-existing” – I could pay $400 a month for the insurance, then another $1000 in cash or the things that still weren’t covered.

Unlike countries with real, full health care and public assistance, I’d have to figure out how to put a roof over my head and feed myself and whatever family I was supporting on my own.

It was still a vast improvement.

I was still incredibly drained, despite being able to cut my working hours in half and still have the same amount of discretionary income, now that my health care costs were down.

I should have known then that I probably had cancer already. I’d had a confusing diagnosis in my 20s that would have been a warning, had they understood CLL better then.

But I didn’t figure out that the cancer was active until January 2016, after a year of dragging my feet to see a new doctor.

I was more afraid that I had diabetes, given my family history.

When I started to feel more fatigued than usual, if ever I started to drag during my regular routine, as I did every 4 to 6 years, I started with a new pain management doctor, from the beginning, for a second opinion.

Then I’d go an alternate opinion from a different set of doctors, like orthopedic surgeons, or naturopaths or physical therapists that worked in concert with doctor practices who could prescribe drugs.

I didn’t want to go through the ritual this time, going to every doctor I could find, to see if they could figure out either what was wrong with me besides spinal and nerve disorders.

Or how, for the love of all things good, to just fucking stop my pain.

Some days I lean up against the wall and just cry.

I have been in pain on and off since I was 23 years old.

I have been in constant pain since 2002, minus a handful of pain free days from when I was having nerve block injections, which I gave up crowdfunding due to no other real reason than the shame of having to ask for money.

Three times I’ve had no other choice than to ask or allow friends and my online community for money to help with my bills.

Not my business bills or extravagances. I’m talking rent, food, phone, cable. 

(And yeah, cable isn’t an essential bill. However it IS bundled with my internet. Which I need to work as most of my business function online.)

And it’s incredible to me that I could  be smacked down this much in life- again, not including the various struggles that come from being black and being a woman and being a black woman (especially online).

It’s more amazing to me that through the support and love of family and friends and the Grace of God that I somehow find it in my soul to get back up, again and again.

Only to have the one lifeline I’ve ever relied on taken away.

To be very blunt: I only survived cancer because

a- the ACA allowed me to buy insurance before I was diagnosed and

b- with the ACA there was no cap on my treatment.

It saved my life twice, once mostly figuratively – I was near suicidal from pain when I got my insurance for the first time in 13 years.

The second time, since there was no financial cap on my treatment, the cancer is  under control instead of killing me.

I was on the mildest, cheapest treatment, but with both medicines, the cost would have run into more money than I’m likely to make in the next 5 years.

Which, by the way, is how insurance is supposed to work. 

If I’d been allowed to have it the whole time, through the magic of compound interest, on a high end plan they would have made about twice as much off me than what my treatment drugs actually cost, over the course of my life.

When you make your monthly payments, smart companies bank as many accounts as they can, earning interest, just like banks do. 

So I can’t understand how, any person who can do basic math – or find a compound interest calculator online- would not want the Affordable Care Act to stay exactly how it is. Or be improved instead of destroyed.

I’m barely, barely hanging on.

I had to sell one of my businesses to my former partners for a song, just to be able to reduce my work hours.

Still I worked every single weekday during treatment.

My recovery is the slowest process ever.

I still have very little stamina.

Plus I found out during cancer that I have rheumatoid arthritis, explaining why my hands are sometimes sore and disobedient when I most need to type.

You have no idea what a pain in the ass typing with your voice can be- even with Dragon. 

Because it’s not just an input change for typing, it’s your whole computer. Try to copy and paste with your voice. Forget about editing a graphic. It’s a lifestyle change.

Thank God it exists but it makes writing possible not easy.

And it’s hard for me to gather the belief that I can one day return to a full time income again. Even an ordinary full time income, not the low six figures I was making and feeding 7/8 people with, comfortably.

That mission is hard enough.

But I’ve fallen before.

You stand back up if you can. And I could. Because after that many times it’s just what you do. To you, this is what life is. This is what normal IS.

Until. They take away your feet.

That’s what this new health care bill does. I have no feet I can get back on without healthcare.

This new nonsense, if passed, wouldn’t come until 2020, so that should comfort me right? Okay, listen.

That’s within the window that my chronic cancer – which is NOT in remission, but only controlled – could become active again.

The window is two to nine years.

The first time around, I bought insurance, a high end CareFirst plan. Because they couldn’t say no anymore. They couldn’t charge me a crazy price, and they can’t just turn me away anymore.

But after barely using it – and hardly ever getting anything approved – when I got cancer, I had to go through the ACA marketplace.

And without revealing details that I’m still not willing to disclose in public at this point, the pre-existing health condition issue is not the only issue.

I need the ACA to stay the way it is or for it to get better, not gutted.

Is it perfect now? Hell no. There aren’t enough provisions in place to keep the premiums from going up.

And they do go up. But they were going to anyway – what most people don’t realize is that however much your premiums went up?

They went up less than the insurance companies wanted them to because of the ACA.

No matter what, the increase in premiums wasn’t caused by Obamacare. That’s on the insurance companies not the ACA. In fact, insurance premiums are rising at a lower rate than they ever have.

What am I supposed to do?

After contributing to the economy, to society? Instead of accepting the public assistance that should be my due, I continued to work hard.

(Paltry sum though it would be even with all the back funds combined. It’s honestly not worth getting a lawyer to sue for the federal or state disability that’s owed to me for the years I drew a salary.)

Seven days a week I work sometimes, in pain you can’t imagine even if your back has gone out before. Multiply it by five and you have me on a good day.

What am I supposed to do now?

I can’t ask another friend or relative for money until I have something to give in exchange.

That tiny scrap of pride is all I have left. I love people for trying to help me and gladly will accept people’s spare change if they enjoy my writing.

(Including you, there’s a link at the top or the bottom of this post, please and thank you.)

But even if I had the energy to create some kind of marketing campaign or PR story? Even if I could push through the pain to come up with a way to tell my story to more people?

I just don’t have anything left.

I spent my whole life believing that working hard would get me something out of life. I spent my spare time standing up for other people’s rights.

And somehow.

Somehow I still ended up being cast aside by the system I poured taxes into.

Somehow, providing a few jobs did not insulate me against being discarded by society in my low moments.

And somehow this is happening all over the country. Who are they going to oppress when we’re all sick, dead, incarcerated or can’t even afford to live, never mind work?

They say we’re too comfortable, Americans. Never mind liberals versus conservatives. It’s not that kind of fight anymore.

It’s right versus wrong now. It’s not just your politics. It’s your life. It’s MY life now, sure. BUT.

Some version of this tornado of misfortune is headed your way.

How are you going to make it without health care?

What job are you trained to do once a robot takes over your duties?

What’s going to protect you from having breathing problems, stamina issues or pain once pollution gets back into your lungs, skin, and blood?

Who’s going to stop you from having a cancer brought on or exacerbated by environmental factors?

Who’s going to take care of your parents when you can’t? Or your kids?

The darkness ahead of us can still be thwarted.

But we need to start getting real about what we’re facing. Especially for those of us who are already close to falling off a cliff.

Fascism, totalitarianism, oligarchies masquerading as democracies? These are not things that are going to announce themselves.

We’ll give away little parts of our basic human rights, starting with the ones like privacy that aren’t in the Constitution.

Starting with rights people don’t know are in the Constitution, such as the right not to have your rights violated by what other people view as the right to pursue theirs.

I’m hoping my story is going to remind you to fight. Yes.

But fuck fighting for me. No one is fighting for me and I really don’t expect anyone to do it. The people who cared have squeezed their last juices out for me. The ones who still do haven’t got $5 to give me.

I have to save myself, I don’t have any other choice.

As usual.

So fight for you.

Fight against the version of me that is going to be you, if you don’t.

Fight for your kids, or someone else’s kids that you love.

Fight for the ability to still be allowed to take care of their health while they’re in college. Or your parents when they can’t.

Fight for the other Tinus in this world.

The people who are drowning with no lifejackets, who’ll have to swim or die.

Fight like they will be you.

 

 

2 thoughts on “Angry & Stuck- the story of my chronic pain life & why I fight

  1. Go girl. The ACA info is fascinating! Have you found other stories like this (in all your free time?) you were a survivor way before the cancer. You have a lot to teach.

    • Thanks Kathy. I’ll go back in and add links and resources. I’m inspires by Xeni, who runs BoingBoing- her story as a two time breast cancer survivor and an entrepreneur is amazing. She’s the real MVP. Thanks for your support Kathy.

Leave a comment

Your email address will not be published. Required fields are marked *