“Arthritis or Leukemia?”

Way back in 2003 at 6:00 pm on the dot, for the sixth time in the last four months, I felt the now-familiar feverish ache starting.

I sighed and reached for three ibuprofen tablets, knowing I’d need more in the middle of the night. By 10:00 a.m. the next morning when I didn’t feel any better yet again without dosing up, I called my family physician’s office. He was out on Fridays (and doesn’t everything always happen on a weekend?), but I knew the other doctors in the small office. I was able to get in for a later afternoon appointment.

As I sat on the paper-covered table, the older, male doctor – who was usually a comforting grandfatherly figure – listened to my retelling of the past months and this strange fever that kept coming and sticking around for a few days, complete with night sweats and body aches. He read the thermometer’s temperature of 100.9° F and gave me an eerily premonitory diagnosis: “You either have arthritis, or you have leukemia.”

Three months of intensive testing (including a triple bone marrow test) and what felt like a hundred doctor’s appointments later, he was right – I had arthritis. I was only 32. Wasn’t that for “old people”?

If you’re reading this now, either you or someone you care about has been diagnosed and are searching for more information. Luckily, there is a lot more available now than there was back then. So much that I’ll leave the diagnostic info (the basic info, the “dry” stuff) to the various other sources–see bottom and various links within for more. After living with AS for 20 years, I do consider myself somewhat of an expert on that bit of it. Here, I’ll try to let you in on my two decades of hard-won insights on what to expect, how you can manage and best tips to offer support as well.

Ankylosing Sponda-what?

"Tell me one more time if you don’t mind. Anka what?"

Ankylosing Spondylitis (ang·kuh·low·sing spaan·duh·lai·tuhs) – commonly referred to as “AS” – is a form of Axial Spondyloarthritis. This is a broad term for inflammatory arthritis that generally affects the spine and Sacroiliac joints that connect the spine and pelvis, as well as other joints. Your body doesn’t recognize its own parts and sends out chemical warfare into your blood and attacks its connective tissue. There are two main types: Radiographic and Non-radiographic.

Radiographic Ankylosing Spondylitis (AxSpa)

When AS shows up on X-Rays, it’s called radiographic. This is when visible damage is already seen in the spine and SI joints. MRI’s are also commonly used as a diagnostic tool.

Non-radiographic Axial Spondylitis (nr-AxSpa)

This means that damage or changes to joints cannot be seen on neither an X-Ray nor an MRI. Whether nr-AxSpa is a preliminary stage, or a separate branch, is not yet clear.

Symptoms

The most common symptoms include fever, pain or stiffness (in lower back, buttocks, heels or feet, rib cage, and chest cartilage) and fatigue. Other indications of AS include psoriasis and uveitis. Uveitis is a type of eye inflammation and is a less common symptom, but the highest incidences belong to – you guessed it – AS patients!

Fever is often consistently present in early flare ups or uncontrolled AS. But the biggest and most ubiquitous sign is fatigue. Yes, we all feel it. (I mean, after a global pandemic, is there anyone left that doesn’t feel overwhelming fatigue?!) Yet, I can’t overstate the importance of paying attention to it.

I remember complaining that I didn’t feel good to my then-husband during what I now know was a flare, around Christmas. “You never feel good anymore, what’s new?” was his slightly less-than response. I can’t overstate the importance of paying attention to fatigue. I was a young mother, yes. But I also ran 15 miles a week, ate well, and got fairly decent sleep (my youngest was almost four, so yay for out of the baby/toddler years!). By all accounts and purposes, the unrelenting constant fatigue should have been a big tip-off.

Also keep in mind that AS can present differently in the sexes too. In women, it tends to attack connective tissues first and more aggressively. Each person is a unique experiment of one; just because one person has X symptoms, someone else may only ever have Y. One thing to remember, though, is typically the longer you have a disease, the more likely it is to progress. While us patients might do everything we can to manage that and hopefully slow or stop it, remember that in the end, we don’t know why diseases do what they do, or when they’ll do it. Be kind to yourself or your loved one. Practice compassion for yourself, whether you’re the patient or the support.

For more information on symptoms, refer to the Spondylitis Association of America (SAA)’s page on common symptoms.

Treatments/Medication

While there’s no cure for AS, there are treatments that can slow the progression and lessen the effects.

AS can go in (and out) of remission. (Remission doesn’t mean you don’t have ‘mini-flares’ or that your disease is GONE, it just means you’re feeling good and can do pretty much what you want and did before).

The goal for the patient is to control the disease progression as much as possible, maintain quality of life, and continue maintenance treatment. Remission is obviously the win here, but don’t focus solely on that. It may or may not happen, and it can just as easily come back out of remission too. In the chart below, I will give more detailed information on some of these treatments as I’ve experienced them personally over the last 20 years. For even more information about medication, see Spondylitis Association of America (SAA)’s page about treatment information.

NSAIDS

These include all the usual players like aspirin, ibuprofen, naproxen sodium, celecoxib, Diclofenac sodium, and meloxicam among others.

These can be a big help in managing daily pain, but they do not slow the progression. They also carry some side effects if taken regularly. Celecoxib and meloxicam are newer COX inhibitors that are believed safer on your stomach, but proper supervision and cooperation with your physician are necessary.

Disease-Modifying-Antirheumatic-Drugs (DMARDS)

These work to stop or slow inflammation at the source. Frequently used when other treatments fail or as a supplemental therapy, they are most effective in patients that show peripheral disease activity.

The two most common DMARDs are methotrexate and sulfasalazine.

Methotrexate is a low-dose chemotherapy drug that works by blocking enzymes that help DNA (the genetic material in the cells of your body) form or repair. It comes in two forms, pills or an injection. While side effects can happen, with time they can lessen and there are management strategies to tackle these. This is a gold standard treatment in RA, and while it is not known exactly how it interacts with the immune system in AS, it has a proven track record. You will need regular blood tests to monitor the effects of methotrexate therapy. There are risks that should be discussed prior to treatment, such as liver toxicity, which usually resolves after discontinuation.

Sulfasalazine is used less often. It is almost never prescribed by itself but in a combination with a TNFi. Belonging to the class of sulfa drugs, many people find they experience allergic reactions. (I sure did! I came downstairs on the morning of my second dose and my children shrieked “MOM! WHAT’S WRONG WITH YOUR FACE!” I looked in the mirror and what stared back can only be described as a giant puffy marshmallow man.)

BIOLOGICS and BIOSIMILARS

These are what I call the “big guns” and are now the gold standard of treatments for AS. There are several types. The most used fall into the TNFi category: Tumor Necrosis Factor inhibitor (sometimes referred to as “anti-TNFs”). These may sound more familiar: Humira, Enbrel, Remicade, Simponi, Cimzia. Composed of living cells, they mimic proteins in your body to suppress specific areas of your immune system. Because of this smaller target area, they have fewer side effects than DMARDs. (Do not confuse this with no side effects.) However, they are highly potent and carry an increased risk of infections. They are better at protecting your joints and cartilage and can mean the difference between a ‘normal life’ and one of disability and pain for a person.

They are the most effective if you also suffer from associated conditions like IBS/IBD, which AS patients are more likely to develop. If you are like me, and one of the “lucky” ones who develop uveitis, Humira is THE front-line attack. Remicade is another one known for helping IBD. These (except for Remicade which is given by IV every 4-8 weeks) are usually self-injecting pens. Other side effects include potentially increased sinus infections, allergic reactions at the injection site, and increased fatigue and headache. Typically, these mitigate after an initial period, but you should work closely with your rheumatologist on these. Biosimilars are similar drugs to their name-brand cousin, but are designed to be more affordable (theoretically, anyway!)

Other very promising biologics emerging into the forefront are what are known as IL inhibitors- the most promising approved for AS are Cosentyx and Taltz, which are IL-17 inhibitors. These targeted biologics work on different proteins and are especially helpful for people who do not find relief with TNF inhibitors or have become resistant. There are excellent study data showing these can bring relief to people who have struggled with traditional biologics. Their risk profiles remain similar.

GLUCOCORTICOIDS

These are commonly known as “steroids.” Whether that is prednisone or methylprednisolone, these can be pills or injections. They are excellent immune suppressors, to the point they carry significant risks. They are not very targeted, for one. They affect your adrenal system if taken orally. Injections are slightly less of a concern in that respect, but they can damage connective tissues and ligaments if given too frequently. They are mostly used to get control of a sudden flare or another issue that has cropped up

Why me?

To look at me, you’d never, EVER know I had a chronic autoimmune condition that could compromise not only my daily life but permanently disable me. I was strong – one of the strongest people I know.

In my case, my grandmother had Rheumatoid Arthritis (RA), my mother had been diagnosed at the same age I was (32) with RA too, and my aunt (her sister) had just been confirmed as having Ulcerative Colitis (UC.) Given such a strong genetic lineup (strong may be a misnomer here. Thanks, Grandma!), it certainly tipped the scale for the rheumatologist to look at autoimmune disease immediately.

When I was diagnosed, I was both relieved and in denial. Relieved that I finally had an explanation for the last few months, but in denial that a young, 32-year-old like me could possibly have this dinosaur-sounding disease. I was a runner! I had three healthy and active young children and I still felt like a kid myself!

Although I didn’t know it at the time, this was a relatively “quick” diagnosis, and I benefited from getting into an excellent rheumatologist right away.

Okay, but what's it actually like to have AS?

We each will have our own experiences with it, but here are some generalities.

Expect to be fatigued and frustrated

I’ve woken up full of promise and made plans with friends or my partner, only for the tide to turn later in the day and I realize there’s no way I can do anything other than take some ibuprofen and go to bed. If you know me, you’ll know this isn’t typical for me. Or wasn’t. But now, I have had to learn the art of giving myself grace in this respect. Some days are so bad, I don’t even have the energy to take a shower; on other days, I might be able to manage showering but not washing my hair (Spoon Theory is a great explanation).

I’ve had days where I’ve gone to bed in a good mood, having had a stretch of “good” days and looking forward to the next. But when I get up, it’s like I’ve been hit by a truck out of nowhere. There’s not a lot of rhyme or reason to these days, so it’s particularly frustrating. I’ve spent 20 years trying to figure out if weather patterns make a difference and the most I’ve learned is that moderate warmth (80-85 degrees), low humidity, and high elevation seem to make me feel the best. That’s it. But, I’ve had plenty of mini-flares on a perfect summer day.

Your patience (and everyone else’s) will be tested

Let’s talk about the twin demons, chronic fatigue and chronic pain.

There are lots of levels of pain, and our tolerances vary widely. Same with fatigue. New parents know a thing or two about dealing with fatigue. But I can guarantee you one thing for sure: the continual weight of these, individually but especially together, no matter how low level, is like a buzzsaw grinding away.

I don’t care how well you think you’re dealing with it. It makes you snappy. It makes you impatient. It makes you negative. It makes you depressed. It takes enormous effort to sometimes do the smallest things or listen to your loved one or friend happily chatter away when you just want to bury yourself under your down comforter and hide away. It takes everything not to melt down when you barely have enough tolerance to communicate but your partner, innocently unaware of how bad you are feeling at the moment, acts like a completely normal person and says “What? What did you say? Sorry, I didn’t hear that.” It’s a good thing I don’t keep weapons in the house or that I can’t breathe fire.

So, friends, tell your people if you’re having that kind of day. And forgive yourselves if you don’t get it right, every time, because you won’t.

People, offer a little extra comfort, care, and support if you see that your loved one is on the verge of murder. This goes a long way to avoiding legal fees and jail time!

New symptom flare ups

AS likes to move around and settle in different spots.

I’ve had gut issues that just as suddenly pop up out of nowhere. I’ve had systemic candida, a type of yeast infection, that has taken a year of daily dosing with an anti-fungal to start to eradicate.

Between foods I’m allergic to (some dairy issues) and then this added into the mix, I’ve had stretches where all I can eat is cream of rice and Fruity Pebbles with soy milk.

As a cook, baker and bona fide foodie, this is one of the hardest parts. My partner has an iron stomach and can eat anything, yet he could eat the same dry – dry I tell you!- turkey and cheese on whole wheat bread every single day for the rest of his life. His bacteria are wasted on him, I often remind him.

Diseases have a mind of their own

For a few years I blew off my knuckles and brushed them on my chest thinking, “Lookit me. I’m eating so good and exercising, I’ll NEVER get as bad as those people on the internet!”

A fool and his hubris are soon parted.

First off, I assumed – and we all know what assume means – I’d never get uveitis, which is inflammation in your eyes. This can come on suddenly and is quite serious, as it can cause rapid blindness. I’d had some redness here and there but was “too busy” to really think about it. I’ve suffered from migraines for years, so I wasn’t unfamiliar with head pain.

Finally, after lying in bed feeling like someone had a vise grip behind both my eyes for days on end, and my partner and my kids asking me what was up with my red eyes, I saw my eye doctor. Then followed a referral to an eye specialist, both anti-inflammatory and steroid eye drops, and finally, a month on prednisone. UGH. (At first I was like the Tasmanian Devil. I had worked a full shift at REI on my feet and came home and started cleaning furiously. My partner was amazed I had that much energy. “Welcome to the good part of the steroids! It’ll turn bad fast enough, I need to make use of it while I can!”)

It took the better part of two years to get the uveitis under control, and I’m still not sure it was anything I did or took. Diseases can just sometimes loosen their grip and move on to the next victim, for no apparent reason.

Trial and error with treatment and side effects

I was rather lucky that my rheumatologist was quick to recognize I was in a bad way and he got me on two powerful medications fairly fast. I did, however, have to do a trial of only NSAIDS and Sulfasalazine. This can be a very frustrating time. Side effects and waiting to see if this will work while suffering the ravaging of the disease all combine to make you feel like you’re never going to come out the other side.

After taking methotrexate for over a decade, even while backpacking at 10,000’ elevation, it really started to give me side effects about six years ago. Some of it is dose-related, I’m sure. But as it is a chemo drug used at slightly lower doses to treat arthritis, you can experience the same side effects. Bleeding gums. Nausea that lasts for a day and a half. Neuralgia pain. Headache. Since it’s likely I’ll be on methotrexate for the rest of my life, losing two days a week to this is a big deal to me.

Explain and Explain again

Be prepared to explain to many health professionals (even some medical) what your disease is. Dentists, endodontists, dermatologists, and optometrists to name a few. They may have a vague recollection of hearing it, but they won’t understand what it is exactly. Medications in particular are of concern, so make sure you bring them up to physicians or healthcare professionals just for safety’s sake.

What about managing day to day?

Here’s a few helpful suggestions for both the diagnosed and their loved ones.

Tips for patients

Some days you’re the windshield, and some days you’re the bug, unfortunately. To help you navigate daily life, here are some pro tips that I have uncovered for myself.

Find a good doctor

I have long had a close and personal relationship with my orthopedic surgeon. He knew me very well. He’d even seen the inside of me and knew what my connective tissues looked like in ways I did not. Our goals were the same: to keep me doing what I loved as long as possible. (Hot tip: find a physician that listens to and appreciates your desires within a reason. Their goals should always be to help you achieve what you can.)

Your rheumatologist is your partner – make sure you work together well. Sometimes, this requires a learning curve. However, if you don’t feel heard, if you feel dismissed, if you sense frustration at you instead of the disease – find a new one. I know it’s extremely difficult at this time and seems like a gamble, but trust me. You’ll be glad you did. You absolutely must have a physician who supports you.

Keep a wall calendar

Keep a calendar where you can record appointments and start dates of different treatments. Most tools in the arsenal require some time to really start working. The only ones that provide immediate effect typically are steroids and NSAIDS. Some COX-2 inhibitors need a month to build up, however.

This will also help keep track of side effects, as most can subside to some degree, if not entirely. It will help you see whether you’ve given a med long enough or not, and keep track of other indicative symptoms that may crop up.

Don’t be afraid to ask for help

Ask your partner or a friend or family member to help with chores that leave you exhausted. Cleaning, grocery shopping, and pet care (dog walking) are some that can seem insurmountable if disease activity is flaring.

My ex-husband was a firefighter, so he was gone out of the house for 24-hour shifts three times a week. I was exhausted and struggling to keep up my children’s routines and the cleaning and cooking, and I felt like my physical condition made me grumpier and crabbier with them. (Being a firefighter though, my ex was really good at cleaning, I’ll give him that. He did take over a lot of it. If you’ve had kids, you know how right Erma Bombeck was when she said, “Cleaning with kids is like shoveling the driveway when it’s snowing.”)

Be adaptable

I’ve been backpacking and enjoying the outdoors since I was a child. I’ve been running since I was 17. There wasn’t a trail or a route that I didn’t think I could handle. I do – or did – a major amount, even a majority, of backpacking off-trail as in cross-country.

I now take easier backpacking trips for the most part, or at least for the moment. (Remember that your attitude makes a difference!) I’ve taken a hiatus from running that I don’t know won’t be permanent. I’ve had to adapt, because continuing to push myself did nothing but wear me out, frustrate me, drive me to the point of tears on a mountainside and make living with me incredibly difficult. Is my goal to achieve remission? I’d be lying if I didn’t say I’d love that. But first and foremost is my goal of stabilizing my health and enjoying my life. Slowing down and adapting a bit has helped my inflammation by lowering my stress levels.

Listening to my body isn’t always easy, because my mind and my ego have very large loud voices. My body has the last word though, and keeping track of activities and how they affect me help reveal patterns that can be useful information.

Keep up mobility

Mobility is extremely important in Ankylosing Spondylitis.

You’ve heard the axioms “use it or lose it” and “motion is lotion.” Well, these are bedrock for a disease that wants to strip you of your motion and mobility. My rheumatologist, who was a runner himself, gave me an extremely important bit of advice early on: “Don’t stop running if you can help it; you’ll never start again.”

I’m certainly not suggesting if one isn’t a daily runner to suddenly become one. One of the reasons it’s “stuck” for me is I love it, plain and simple. But some sort of exercise program is absolutely essential for long-term health with AS. Whether it’s walking, cycling, tennis, swimming, or yoga, some sort of movement is imperative. After 34 years of running, I took a break last spring in favor of walking four to five miles a day most of the week because my inflammation just wouldn’t subside, and I felt I needed something less strenuous.

Consider a strength training routine as well. Research shows that building and maintaining muscle mass is one of the single greatest contributors to preserving health and mobility for people. People like us need all the ammunition we can get in our arsenal. It also helps preserve your connective tissue and prevent injuries by keeping joints aligned with proper muscle mass.

(Fun fact about mobility and adapting! Any kind of sitting around, even for only 20 minutes, will make me stiff. This is especially amusing when I get up from having dinner. To avoid everyone around me thinking I’m a stumbling drunk, I took to holding onto the table while getting up, then fiddling with my coat or phone or whatever for a minute to allow my body to adjust to the sudden upward momentum and to literally prepare my muscles to move forward. I still look stiff, but at least I don’t look like I’ve had one too many tequila shots!)

Tips for Loved Ones

If you are the loved one of someone newly diagnosed, know that they are in a whirlwind of conflicting emotions. “Will I get better? Will I return to my ‘normal’ self? Can I continue to do the things I love?” These are just some of the thoughts I had, in the few moments I had to myself, usually lying worn out in bed.

If you are a loved one, make sure to support your partner in ways that help them manage their daily pain and emotions. I had none of this, so here are some tips I would have found helpful.

Listen with empathy and validation

The greatest gift humans can give someone is empathy (notice I didn’t say “sympathy.”) Empathy allows us to sit for a brief moment in someone else’s experience/body/shoes/mind.

When you have a disease that isn’t going to go away, that is going to affect your life for the rest of it, nope-never-getting-away-from-it, it’s not the same. It’s the constant, cumulative fatigue of dealing with all of it that’s the second worst. We know you don’t know. We know you CAN’T know. We don’t EXPECT you to know.

We just want to have a moment to shake our fist in rage and express it to someone. We just want someone to acknowledge how messed up it is, all these stupid diseases. Of course, finding a support group or an online group can be very helpful, but we want the people we love and keep close to share that moment with us occasionally too. Because carrying it single-handedly is actually the worst. When your partner or your friend shares that moment, really sees you in it – that’s the ultimate support.

Do the “things”

Offer to get up for your partner. Let the dog out (or in), especially at night or if the patient is in bed, or if they’ve been sitting on the couch. If they’ve just sat down and suddenly remembered they forgot their water/laptop/etc in the kitchen, PLEASE say, “No, stay there. I’ll get it for you.” This is SO BIG, I can’t express how helpful this is.

I have an aged german shepherd who has a very loud bark. Often now, he likes to go out at 5 am. Or in the middle of the night. If one of the neighborhood cats is roaming, or a raccoon is out and about, he will loudly announce their presence – to the dismay of my neighbors. He’s “my” dog, and no one wants to get up at 3:30 am to make him come back in (or let him out in the first place!) but I am so stiff it will take me three times longer to get up and get him than it will my partner. Plus, in my haste, I usually end up hurting myself and it’s quite painful, to be honest. It takes a LOT of “spoons” to do this. It is a very easy way to show support, and your loved one will thank you. If you’re the patient, please don’t hesitate to ask your partner. If need be, have a conversation during daylight hours, but it is OKAY to ask for help.

Help with medication if you can

I’ve had to inject myself with several different drugs on different days of the week, which let me tell you, without the auto-injector pens, I’d be a basket case. I’m not sure why, as they don’t usually hurt, but sticking a needle into my stomach and pushing the plunger down is very much an “easier said than done” thing for me.

I had a new drug that I tried this summer, where I’d practice on a tangerine for 45 minutes, over and over, but every time I grabbed my stomach to inject, nope. Nada. Couldn’t do it. I cried tears of frustration and felt like a failure for finally asking my partner to do it. I mean, come on. What If I didn’t have a partner? I’m totally self-sufficient. (Or at least besides this!) I’m “tough!” So partners and loved ones, please learn how to help, in case you find yourself with someone like me. I cannot express my appreciation enough for this task.

Take over some daily tasks for your loved one

Make some meals that can be frozen and drop them off so on days when cooking seems impossible, they can still nourish themselves. Food is one of the best expressions of love and care that we humans have. If you are the partner, offer to make some simple meals if you don’t regularly do the cooking, or to pick up takeout. (Or, when you are backpacking, take over preparing the whole kitchen!)

Moving forward to the new normal

As you or your loved one becomes more familiar with the disease and finds a treatment protocol that works, you’ll settle into the “new normal.” That doesn’t mean you or your loved one are back to normal.

Sometimes treatments do indeed achieve this. When I finally started Remicade in early June (my diagnosis was in March 2003), by the end of that summer I felt great. Great enough in fact that I tried to convince my rheumatologist I didn’t have AS. I was young, I was busy, I didn’t have no time for disease! In a way, this was valuable in that I continued running despite having some “vague spinal disease” (waves hand in careless fashion). Luckily for me, he had seen enough in the decades of practice and he kindly scoffed at my naivete in insisting I was fine.

But life goes on. Many times most of us have to continue working, and it often appears as if we’re “better now.” This is particularly true if you’ve found a cocktail of meds that work to provide significant relief. I’m pretty sure my kids were “aware,” in a dreamy far-off land, that their mother had something “sort of like RA.” Even my ex-husband barely registered anything when I’d mention I was having a flare. This didn’t pose much of a problem when I was overall in remission. I ran the most I’ve ever run during mine, about 40 miles a week on a regular basis) but it did once it became clear I wasn’t in Kansas anymore. To the point he expressed skepticism that I was really as bad as I was.

Once you’ve hit the decade mark, flares are a lot easier to understand. It’s having to explain this to others that becomes an issue. Just because you’ve been good, doesn’t mean you’re going to stay good. If it’s been a while since you’ve needed anything, people can respond supportively initially, but if it continues, interest wanes rapidly. Conversely, your friends, family, and even partner often assume you’ll “be fine in a day or so. She’ll bounce back.”

Compassion fatigue

One of my biggest struggles right now is with my friends and family.

My partner sees me on a daily basis. This allows him to see exactly how bad I really am on any given day. Often he is a better barometer of my condition than I am; I get used to being super stiff and stumbling or shuffling when I get up from watching TV and I don’t realize how bad I am this week compared to last, et cetera.

My friends only see me when we’ve arranged to meet, often for lunch or coffee or a drink. On these occasions, I usually make an effort to put on makeup, tame my hair into something fit for the public, and put jeans on. Of course, we ask how each other is, and good friendships mean we actually want to know the honest answer. But chronic disease and chronic pain are something else. Who wants to hear about that? And who really wants to talk about it?

I find myself unable to actually tell my friends, “Well, I am not doing so great, and when I first lie down in bed, it takes about two hours for the pain to subside enough that I can really get some deep sleep; which then only lasts another couple before NOT moving takes its toll, so by the time I get up another two hours later, I am utterly exhausted and feel worse than I did when I went to bed.” Wah-wah! Hello, Debbie Downer!

Even better is when you dare to talk about your connective tissue complications (for example, yesterday I started my workout and immediately a chorus of no less than 15 pops went off like a firecracker strip. It was quite amusing and loud, and I was sorry no one was there to witness it) and you hear back, “Oh I KNOW! You should hear my knee crack when I bend down!” Except one of us has normal wear and tear, and the other has a mixed-up immune system that is waging warfare on the enemy it has incorrectly identified – its own tissues. It’s relatively common for people to face hip replacements or knee replacements, but people like me, with radiographic AS that with strong connective tissue involvement, are facing replacements at a much earlier age, and of almost all joints: hip, knee, shoulder; anywhere your connective tissue and ligaments are, AS is a targeted destroyer. It’s just not quite the same.

Do I hope to be backpacking, running, and enjoying my life in ten years’ time? Twenty years’ time? You bet I do. While of course I just got done telling you all to adapt and be kind to yourself, we all need to live our lives aligned with what brings us joy and we want out of life. So if your passions are such, do as much as you can to indulge those. Otherwise, what are we living for? I try to keep in mind that I’m in it to win the war, so I may have to sacrifice an individual battle or two along the way. But that’s not so different from any of us, is it? In the end, we’re all trying to find our way to the same thing.

Hopefully, with a little help from our friends, we’ll all get there.

Peaks and Valleys: A Backpacker’s True Tales of Ankylosing Spondylitis