Sunday, August 3, 2025

Living with Ankylosing Spondylitis: My Journey with Invisible Pain

 

Today, I want to talk about something deeply personal: ankylosing spondylitis (AS). It’s a type of arthritis that primarily affects the spine. In my case, the vertebrae in my spine are fusing together—that is what the “ankylosing” means. The result? Pain. Stiffness. And a very different way of moving through life.

AS doesn’t look the same for everyone. Some people experience little to no pain. For me, it comes in waves. I was diagnosed around 2008, after what we initially thought was just a pulled muscle. But the pain got worse—so bad at times that I would literally pass out from it.

I haven't had a severe flare since 2015, when a five-hour surgery forced me to lay flat on my back. That position triggered a brutal recurrence. Since then, I can't sleep on my back without days of lumbar spine pain.

My History with Treatment

Back in the day, opioid prescriptions were handed out like candy. I was told to take 4–5 opioid pills a day, along with very high doses of Gabapentin. I didn’t follow that plan exactly. I took the opioids at lower doses, three times a day at most, and they didn’t make me feel any kind of way—I was careful to use them only when I truly needed them. The Gabapentin, on the other hand, was prescribed at very high levels, but I found that much lower doses were enough to calm the neuropathies. Even so, it started affecting my memory, and some of those issues have lingered. I’m grateful I listened to my body and adjusted things, especially now that we know how dangerous and addictive some of those medications can be.

Now, things are more complicated. I take Xarelto for blood clot prevention, which means I can’t take NSAIDs. Tylenol is technically "safe," but for me, it might as well be a sugar pill—it does nothing.

Recent Flare and Modifications

For the past two weeks, I’ve been in a pretty severe flare. I don’t know what triggered it, but the pain hit hard. I had to adapt my surroundings. My bed is on a platform, which makes it easier to get in and out of—but it still requires sitting up and bending, which has been tough.

Blessedly, I found a lift chair recliner on Facebook Marketplace for just $25. My youngest son picked it up, and a friend helped fix the minor issue it had. It’s been a game changer. I can now recline and stand without straining my back.

I visited the doctor, got a steroid injection, and it helped quite a bit. I'm going for lower spine x-rays soon to assess how far the disease has progressed.

Other Symptoms: Vertigo and Neuropathy

On top of the spinal issues, I’ve been dealing with vertigo. When it hits, the room doesn’t spin—I just get deeply nauseous. Sometimes it feels like I’m standing sideways when I’m upright. I’ve avoided taking meds for it because they make me too sleepy. Instead, I use peppermint essential oil, which helps. I have little vials placed around my house—by my chair, bed, desk, kitchen, and bathroom.

Then there are the neuropathies. The extra bone growth from AS can trap or pinch nerves. Sometimes, it feels like my face is on fire. Other times it’s a burning hand, stabbing arm, or a foot that feels electrocuted. It’s unpredictable and exhausting.

I also have degenerative disc disease. The last time I was checked, I had two vertebrae with no disc left—just bone grinding on bone.

Living with Invisible Illness

Here’s the most important thing I want you to understand: This is an invisible illness. People look at me and maybe think I have bad posture. But it’s not just posture—it’s fused bones. I often stand or move in ways that minimize pain, even if they don’t look “normal.”

It’s not that I don’t want to do things. It’s that I can’t. Every day is a choice:

  • Can I stand in the kitchen long enough to cook?
  • Should I batch meals for the week or just try to get through today?
  • Can I go to the store—or will I have to pay for delivery (which isn’t easy where I live)?

Even something like carrying groceries requires careful planning. Because of my aortic aneurysms and AS, I can’t lift over 10 pounds. I either use reusable bags with just a few items or get 10 plastic bags for 10 items.

Dog food? That’s another project. I can’t lift a 50-lb bag. So, I use a scoop and a wagon to move it bit by bit into bins and feeders. Friends and family help when they can—and I’m so grateful for them.

On Gratitude and Grace

Despite everything, I’m thankful. I’m thankful that I’m not in pain every single day. I’m thankful that I have support when I need it. And I’m thankful for the good days when the pain is manageable.

Generally, I live at a pain level of about 3-4 on a scale of 10. For the past couple of weeks, it’s been closer to 9. Thankfully, things are easing up after the injection—but it has affected my ability to work, especially my gig work and hustles. I’ve had to pause things like mystery shopping and inspection jobs that require driving or walking. Sitting has been unbearable and watching a computer screen

Please, Don’t Judge What You Can’t See

If you take nothing else from this, take this: Just because someone looks fine doesn’t mean they are. Your friend who used to be the life of the party? They still want to go. They just can’t.

Be kind. Be patient. Offer help when you can. And take care of your body. Stretch. Eat well. Go for walks. Hug your loved ones.

Because one day, you may find yourself facing invisible pain too.


Want to Learn More?

Here are some resources I recommend:

Thursday, July 17, 2025

Should I Blog About Chronic Health Conditions? I’d Love Your Input.

 

Lately, I’ve been thinking about adding a new topic to this blog: chronic health conditions—specifically, the ones I live with.

No, I didn’t say suffer from. That’s important to me. I live with these conditions, I manage them, and while they affect my life, they don’t define it.

Here’s what I’m thinking, and I’d really appreciate your feedback:
Would you prefer that I write about each condition separately—maybe even create sub-blogs or categories for each? Or would you rather I focus more on how they all affect me together, as a whole, in daily life?

Because the truth is, that’s how I experience them. Not in neat little boxes. They overlap. One flares, and it triggers another. Some days are hard. But honestly? Most days, I get up, go about my life, and don’t even think about it until it’s time to take medication or supplements. Even then, it’s more like, “Oh yeah—I take this because it helps with that.

So I’m considering a blend:

  • Individual posts or sub-pages for each condition (for those looking for specific info or shared experience),

  • And then main blog posts that talk about the big picture—what it’s like juggling them all, how I manage, what’s helped, what hasn’t.

Would that be helpful to you? Would you want to read it?

Please scroll down and drop a comment to let me know your thoughts.
I want this space to be supportive, informative, and real—and your input truly matters.

Thanks for being here. 💜

Tuesday, July 15, 2025

Working from Home Isn’t New — And It’s Not What You Think

 

Working from Home: The Truth Behind the Myths

One of the topics I’ve decided to feature regularly on my blog is working from home. It’s a subject surrounded by rumors, assumptions, and flat-out untruths — and I want to help clear some of that up.

For starters, work-from-home jobs aren’t new. I’ve known about them since at least the late 1970s. Back then, there were people working remotely in positions that required degrees, as well as entry-level opportunities. In fact, odds are good that you’ve spoken to someone working from home without even realizing it. Ever called a customer service line? Many of those agents have been working remotely for decades — long before COVID-19 made remote work a household term.

I personally know people who’ve built entire careers from home, whether out of preference, convenience, or necessity. Some parents work from home so one of them can always be there for the children. Others, like me and several of my friends, choose remote work as a full-time lifestyle. And for folks receiving disability benefits like SSI or SSDI, working from home is often the most practical option. (Yes — you can work while receiving disability, up to a certain limit that typically adjusts every January.)

And let's be honest — if anyone thinks they can live on under $1,000 a month in this economy, I'd love to know where that is, because I might just pack up and move there!


The Financial Perks of Working From Home

One thing people often overlook is the financial advantage of working from home. Think about it:

  • No daily commute eating up time, fuel, and wear and tear on your vehicle.

  • No need for expensive work wardrobes.

  • No daycare costs if you're able to arrange your schedule around your family.

Even if your hourly pay stays the same, your take-home pay increases because your expenses decrease.

If you work as an independent contractor, there are also potential tax deductions for your home office, equipment, and certain expenses. Plus, many remote positions come with flexible schedules, letting you arrange work around your life instead of your life around your job — and that’s a game-changer for your mental, emotional, and spiritual well-being.


Yes — It’s Real Work

Another thing I want to be clear about: working from home is real work. You have duties, responsibilities, and expectations to meet, just like any other job. Failing to do so will cost you your position, whether you're an employee or a contractor. The idea that people who work from home are lazy or less productive is one of the biggest myths out there — and it’s just plain false.


What’s Coming Next

In future posts, I’ll dive deeper into the different types of work-from-home opportunities, from employee positions with benefits to side gigs and freelance options. I’ll also share information about free or low-cost ways to expand your skills and education from home, which can open even more doors.

If you’ve got questions about working from home — whether it’s how to find a legit job, what to watch out for, or how to get started — drop them in the comments below. Who knows? Your question might just become the topic of my next post.


Stay tuned — and remember, the freedom to work where you live isn’t just a pandemic trend. It’s a lifestyle that’s been quietly thriving for decades.

Saturday, July 12, 2025

Life, Work, and Everything in Between: Welcome Back to My Blog

 

Welcome Back — I’m Blogging Again!

So as you can see, it’s been a while since I’ve written. Life has a way of getting in the way sometimes. But recently, I’ve been encouraged to start my blog up again. After thinking it over, I’ve decided to make a little time and work on doing just that.

At this point, I’m not putting myself or this blog into a box. I’ve always lived outside the box. When I wanted to raise animals and grow the majority of our own food, everyone told me I couldn’t do it — but we did. Maybe not as much as we could have, but we did it. And I’m going to do this too.


What You’ll Find Here

This blog is going to be a mix of things:

  • Personal stories

  • Practical advice

  • Ideas for surviving and thriving in today’s world

A lot of what we need to do isn’t necessarily new — it’s just that we may need to approach things differently now.

In the past, if we wanted extra income, we’d pick up side gigs: woodworking, welding, cleaning houses on the weekends, or babysitting for a neighbor. Those skills are still valuable, and if you have them, use them. But today, we also have new ways to work entirely from home, whether you’re entry-level or someone earning six figures a year. I’ll be sharing those newer opportunities too.


Make Money, Save Money

I’ll be writing about ways to make money by saving money. I believe it was Benjamin Franklin who said, “A penny saved is a penny earned.” And he was right.

You’ll get a glimpse into how I save and make money on a daily, weekly, and yearly basis. And no — buying in bulk isn’t hoarding. That myth spread during COVID when people panicked. I was raised to leave a little for others, but if it’s the last day of a sale and your family needs it, it’s okay to pick up what you’ll use.


Work-from-Home Ideas and Job Stacking

I’ll be sharing listings for places where you can work remotely, either as a 1099 contractor or a W-2 employee. Keep in mind, people’s experiences differ with these companies. Every supervisor has a different personality, so it’s good to stay open-minded.

I’ll also cover ways to expand your education at little to no cost and how to stack side jobs wisely. Now, let me be clear — I don’t advocate working multiple jobs at the exact same time while you’re on company clocks. You can’t give good service that way. I personally have three or four gigs when it’s not tax season, but I stagger them on different days or times.


Put Yourself First

And here’s a reminder you’ll hear from me often: take care of yourself first.
You can’t take care of your family or give your best to your work if you’re running on empty. One of the most important lessons I’ve learned is to schedule the important stuff first — family, health, and personal time — and then schedule your work around those things. We have more flexibility now than ever before, and it’s time we started using it.


Gardening, Meal Prep, and More

I’ll be sharing gardening tips, too. The way I garden may not work for you, and that’s okay. Soil, weather, and growing conditions vary — sometimes even within the same town. Take what works for you, and share your own tips in the comments to help others.

I’ll also talk about meal prepping — not necessarily cooking every meal for the week, but small things like chopping veggies ahead of time or marinating meat to save yourself time later. Little steps make a big difference.


And There’s More to Come

I have so many other things I want to discuss here. From personal experiences and reflections to practical skills and resources for modern living, there’s a lot on my heart and mind that I want to share. Some topics will be lighthearted, others more serious — but all of it will be real, useful, and from my own journey.

If there’s anything you’d like me to write about, drop a comment below. I’d love to hear your ideas!


YouTube Channel Revamp

And finally — I’m planning to revamp my YouTube channel. It won’t just be me this time; I’ll have guest speakers too. That project’s been in the works for about a month and a half. I move slow sometimes, but it’s coming.


Thanks for being here — I’m looking forward to this next chapter. Stay tuned!