I’ll Go Down Swinging My Cane

Photo by Chris Barbalis on Unsplash

When I got sick 10 years ago, I wasn’t planning on getting sick. I was actually planning to grow my web design business, save up the good salary I was making, and have a family. I wanted three kids. I’d only just started dating Mike, so I can’t say I was planning on marrying him, but I was an 18-year-old woman with hopes and dreams. I didn’t plan on getting sick. My goal was not to leave the workforce and become homebound because of my illness. I wanted to travel, to eventually set down roots and buy a house. I didn’t plan on going on state insurance because my husband and I couldn’t afford his company’s plan. I didn’t foresee setting aside my dream of having a family.

Let me be clear: I love my life. I’m happy that, even though I’ve lost a lot, I have been able to pursue my other dream—being a storyteller—even while bedridden. But I did not plan on getting sick.

No one does.

Mothers don’t hope to give birth to a baby who loses a kidney before he can even walk. Veterans don’t think they’ll spend their retirement years battling cancer instead of enjoying their grandchildren. Hardworking women who once worked multiple jobs don’t pencil in getting emphysema and pneumonia on their schedule.

But it happens, because life happens.

Today the Senate voted to continue working to repeal Obamacare and replace it with Trumpcare. The proposed bill blocks people with pre-existing conditions from getting insurance, takes away funding from state insurance that helps low-income people, and all but cripples healthcare assistance for the elderly and disabled.

All of this right smack in the middle of my disease changing.

Aside from worrying about family members and friends who will definitely be affected by the Senate’s decision today—possibly mortally so—I’m concerned about me. Because not a day goes by that I don’t wonder how different things might be for me if I hadn’t gotten sick. Would I have a mortgage and three kids? Ironically, if I hadn’t gotten sick, I could afford to pay for my healthcare.

I didn’t get a chance to really blog about it, but I’m having bladder and nerve issues that may be related to my UCTD—that may indicate that it’s developing into Lupus. I’m waiting on labs that my new rheumatologist ordered to check on my kidneys. I’ll probably be seeing a urologist to figure out what’s going on with my bladder; a neurologist ruled out carpal tunnel and said she thinks my nerve pain is from my autoimmune disease. My rheumatologist said that Plaquenil can be great for some things but not others; I may be looking at adding another medication to my regimen.

More tests, followups, and medications that I cannot afford out of pocket.

Under Trumpcare, I’d be blocked from getting insurance because of my pre-existing condition. Right now, I truly don’t know what’s going to happen to me.

And I’m trying like hell right now to not think about the people I know who will actually die without their medications and treatments. Because if I do, I won’t be able to breathe.

Today my country made a shameful, disgusting decision—all because part of the government can’t stand that a black president dared to try to help sick, disabled, and low-income people. They can’t bear to let Obamacare exist, just like they couldn’t bear to allow the original bill to pass. Instead of trying to fix the things that are wrong with Obamacare—like the annual fee for uninsured people that, ironically enough, the GOP helped create because they bickered over the original bill—they’d rather burn it all down, out of spite. They’d rather not examine the exorbitant cost of healthcare and medication in this country. And now 24 to 32 million Americans face losing healthcare. Of those 32 million, a good percent of them will die without it.

I cried all afternoon. My eyes are swollen, my heart is broken, and my autoimmune disease continues to attack my connective tissues, nerves, and bladder. I don’t know what’s going to happen to me or my loved ones. I keep trying to find some hope tonight, something to hold onto. Because I’m one step closer to losing my healthcare, but it’s not over yet.

Step by Little Step

via Unsplash

I’ve been taking Plaquenil and Prednisone for my UCTD for over four months now. For a little while, I was having some moderate anxiety: fatigue, feeling frozen, heaviness in my legs. I thought it might be Plaquenil (or even Tramadol withdrawal), but I haven’t had any of those symptoms in a while and I’m still taking Plaquenil (with Tramadol as needed). I think I might’ve freaked myself out about it, too, and it sort of became this brutal cycle. But my anxiety is relatively tame and my meds are working—all good things.

The temperatures and barometric pressure have been all over the place lately, as usual in New England. It snowed in March and we’ve been getting rain this month, along with random hot days. This has been killing me, but the difference now is—thanks to Plaquenil and Prednisone—I just take some Advil and Tramadol, and it’s enough. Usually, anyway.

Sometimes it’s not.

I’ve been having lots of trouble with my wrists and hands lately. For the past decade, I’ve struggled with severe pain in all of the joints in my hands, but this is a different ball game entirely. For quite some time now, I’ve been getting numbness in my ring and little fingers (which I’ve been ignoring, haha). In the past few weeks, though, it’s progressed to burning, tingling, and icy-weird-ness in both of my wrists and all throughout my hands. It sounds like carpal tunnel, which could easily be caused by the inflammation in my tendons.

I kinda always knew this would happen, eventually. I mean, I am an author, and before that I was a web designer. There are few hours of the day that I’m not hacking away at the keyboard. I guess I just thought I was years away from having to worry about it. Then again, the possibility was mentioned to me a decade ago, so I guess it would’ve been years away then. 😂

The only thing that really seems to help are my wrist braces, which I usually try to wear while using the computer for long periods of time. For the longest time, I was sleeping in them and that seemed to help, but I’d stopped because my wrists weren’t hurting anymore. Now I’m back to wearing them again, and I’m even bringing them everywhere with me because I need them almost all the time. It’s not a big deal, per se, but it’s kind of odd—to me, anyway—how quickly this has progressed. I had the numbness for like a year or so and then bam! Tingling and burning.

I’ve been meaning to ask my rheumatologist, but my appointment keeps getting bumped back for one reason or another. I see him this week, though, so we’ll see what he says.

Felt like a selfie, so. #disabledandcute

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Aside from weather-related flareups and possible CTS, I’m doing okay. I’ve been super tired lately, so I’m wondering if my B12, D, or iron levels are low again—spoiler alert: they usually are—but even that’s manageable with cat naps, afternoon teas, and my old fallback Emergen-C.

I’m looking forward to the weeks ahead as the weather continues to warm and I’m able to get out and do more. Last week I went to the zoo with Sandy and the kids; a few weeks before that, on a random nice winter day, I walked a mile.

Slowly but surely I’m getting my life back.


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