April is Ankylosing Spondylitis Awareness Month. I have lived with this disease for twenty three years. This is my AS story.
What is Ankylosing Spondylitis?
Ankylosing Spondylitis and Spondyloarthritis in general is caused by an autoimmune disregulation. It is an inflammatory disease that results in arthritis in the spine and joints. AS is frequently accompanied by other symptoms and disease especially in the eyes.
My AS Story
One morning when I was 27 years old, I woke up with severe lower back pain like I’d never felt in my life. I’d never been real easy on my body, but always took care to use proper lifting techniques. On this particular morning, there had been no trauma or apparent reason to cause the pain.
I went to an appointment with my doctor at the time. He ran some blood tests and did an x ray. Said maybe I sprained it, and that my blood iron was a bit low. Put me on iron supplements and ice packs.
I lived with the pain. The iron supplements maybe helped some, but the pain was mostly still there. I used acetaminophen and ibuprofen at the maximum recommended daily dose for years.
The Diagnosis Ankylosing Spondylitis
Fast forward to 2016. I was riding passenger in a truck that rolled approximately 8 times. The five of us were lucky to walk away with relatively minor injuries. However later that week, I started experiencing neuropathy in my feet for the first time. After the accident, I was spooked and immediately went to see the doctor in the ER. (That was also the clinic for our small town at the time.)
Fortunately we all survived.
Doc, ordered some X-rays, and started asking me questions about my health history, and in particular my back and joint pain. He told me he had a theory, but that I needed to take a blood test to check for the genetic marker HLA-B27.
A few days later at the follow up appointment, Doc broke the news that I indeed had Ankylosing Spondylitis. Additionally he confirmed that I hadn’t damaged my kidneys and liver much with 15 years of max daily dose of anti inflammatory and pain pills.
Living with AS
Doc prescribed a new anti-inflammatory, which is gentler on the body. Still not great, but manageable. Now keep in mind that the only time I don’t feel my pain, is when I’m sleeping. The meds help some. I manage my pain as well as I can. But I will say I felt was significantly better than I had in years.
This is a catch-22 disease. If I sit or lie down for too long, I hurt bad. It helps to get up and move. Stretching walking, and yoga help. But move to much and I feel like I’ve been beat in a fight. There’s a balance. However because this disease is progressive, the line keeps moving. The pain is random in location and intensity on a daily basis, however it never ends.
It’s Not Just Back Pain
Eye Problems
Six or seven years ago, I had my first flare of Uveitis (sometimes known as Iritis.) This is a painful eye condition I wouldn’t even wish on Sauron. My local Optometrist, diagnosed it and explained it to me. Said it’s kind of like having a charlie horse in the eye. Symptoms include photosensitivity, blurry vision in one or both eyes, and pain. Treatment involves steroidal and dilation eye drops several times a day for up to two weeks or more. I had three or four of these flares a year until I got a new Opthamologist last year. Now I put a steroidal drop in each eye once a day and fingers crossed…….
Let’s not jinx that.
Good Luck Getting Services
I’m currently trying to get a rheumatologist. I have a referral, however if you have ever dealt with getting health care services in New Mexico, (or anywhere in the rural US), you know how this goes. Might be five or six months or more.
I’ve seen counselors and mental health therapists off and on for a number of years. After moms passing last year, the stress of just trying to make a living, and ever increasing pain, I went on the search. I found a practice I really like, and believe they can help me significantly with some things I want to explore.
I was told they were almost approved to accept and bill my Medicaid insurance. After the intake, and nearly being on the schedule, they apparently still need one last approval, from a state employee.
Last I followed up, two months later, they are still waiting for that approval. When I call the state dept responsible, I was given a ghost email address to send my inquiry. (And folks wonder why people hate government.)
If You Need Help, Ask: #988 / 988lifeline.org
Disability
I filed for Social Security disability and recently received my first denial. I’m in the first appeal process, which will likely take a while. I consulted an attorney. He said I don’t need help getting denied again. Once that happens, I should call him back to reassess.
Life Goes On: Living With Ankylosing Spondylitis
Spoonie Warrior
Spoon theory is a metaphor coined by American Writer Christine Miserandino in 2003. It describes the amounts of physical or mental energy that a person has available for the day to complete tasks. It also describes how this energy can become limited.
Visualize spoons as units of energy. A person without a chronic disease or disability may wake up and have 100 or 1000 or maybe even unlimited spoons. Upon waking up and throughout the day, I have to assess my pain and energy levels. Spoonies do this throughout the day so they can prioritize tasks. Some days I may only have one or two spoons. These are “get done what I have to” days. Other days I have more mental and physical energy and can get more done.
Because we have long term chronic disease, our bodies do not recover the same way as people without a chronic disease. It takes spoonies much longer to recover our energies because our bodies aren’t working properly.
Making a Living
I left my wage job in 2022 to help Mom after she fell and broke her wrist. I found that my body didn’t hurt nearly as bad. Construction is hard on the body anyway, and I realized I was making it worse for myself.
Selling Rocks & More
Because of my living arrangement on the ranch, I trade feeding chores for rent and utilities. If you’re here on my site, you know about this amazing agate I show and sell in the shop. I also do a bit of day labor around the ranch.
I’m also a web hosting reseller for GreenGeeks Web Hosting* and build websites for myself and other small businesses. In the age of Shopify and Wix, however, people are less interested in custom builds.
I have plans for fun sites on several domains I currently own. And the new Willett Creek Agate YouTube channel is taking a bunch of time currently. All of this allows me some flexibility to manage my energy.
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You can find the rest of my , including information for guided rockhounding tours. Because rockhounding is therapy!
So if I don’t post, reply or get new videos uploaded right away, have patience. I appreciate you. Thanks!