Each individual affected by spondylitis has their own unique story. We at SAA believe that each and every story can be a source of inspiration and empowerment. We’d love your story as well! Send it to us at Programs@spondylitis.org
By James Magdaleno
Thursday, March 28, 2019
We all have a Bully in our lives, whether it be a physical person or in the form of pain or anguish, but we all have one. Since childhood my Bully has taken on many forms and I have overcome them one way or the other, but my current Bully is relentless and today I am going to share him with you. See, my Bully does not come in a form of a person but a condition. I have Spondyloarthritis, which basically means that joints and ligaments in my body are inflamed and most of the time I am in great pain. Enter the Bully. (aka every negative feeling out there.)
Chapter 1 – The Ride
Two years ago, I was in a car accident that screwed up my back, crushing two vertebrae between my shoulder blades. While in recovery, I lost my job because the company decided to eliminate my newly promoted position. My Ego was crushed but I decided to take the severance package and take time to recover. In that moment, I decided I was going to do something worth while with the new-found time. So, I began training for the MS-150. For those who do not know what this is, it is a ride on a bike, from Houston to Austin, Texas. Yup, 173 miles through rolling hills on a bike. My beautiful and supportive wife looked at me with very sweet eyes and said, “Oh, honey you’re over 40, are you nuts? What about your back?” I assured her that I was still as young as I needed to be, and this was going to be my comeback tour.
December 17, I purchased a new hybrid bike and began to train Mind you I had not touched a bike since I was about 16 years old, but what the heck, here we go. I started off slow with a mile or two and gradually increased. Oh yeah, the Bully was along for the ride. Sometimes our Bully makes us stronger and the more I hurt, the farther I would push myself to go. The thing is that through exhaustion, sweat, and determination the Bully showed up less and less. I was doing it and was very proud of myself. The first time I broke fifty miles I almost cried, but I was too dehydrated, so nothing came out. 75 miles and then bam 100. I figured that if I could ride to Conroe, Texas and back, I would have no problem making it through the charity event. I was sooooooo wrong. Training kept going and my confidence continued to build, and on the day of the event I was lined up in my tight bike shorts and jersey and ready to take on the road.
Footnote: I am an overweight, 46-year-old smoker who in his own mind was a 20-year-old jock.
Nevertheless, I climbed aboard my trusty stead and away we went. Three miles into the race something caught my tire and I went end over end slamming head first into a guardrail.
Footnote: The number one question people asked me when I told them this was, “Did you get that on the GoPro?” Not “were you ok?” “Did you quit?” but “Can we YouTube it!?” Yup, those are my friends and family, and no I didn’t get that on camera.
The ride Marshal pulled over to check me out. The only thing going through my mind was, “is my bike ok?” and “I can’t believe I flipped after three miles.” I thought I was ok: just two busted knees and a bloody arm. Little did I know I had cracked two ribs, but I won’t find that out till later. After reassuring the very concerned Marshal that I was ok, I headed back out onto the road.
“I see what you’re doing Bully.” “Can’t have a minute without you showing up.” “Couldn’t just let me ride in peace.” “Well forget you, let it hurt, I did not train all this time to give up.”
They don’t tell you during orientation that you are constantly going up one hill and down another only to continue this process over and over until you want to die, but I pressed on. The Bully was in full mode constantly trying to get me to give up. “Wow! my legs hurt” repeated in my head around the 70th mile. “There would be no shame in stopping.” “I fell, everyone would understand.” This echoed over and over while the Bully kept pushing that button in my brain causing doubt, wanting me to submit. Quickly my stubborn 20-year-old reared up and said, “let’s do this.” Peddling actually became faster. I was passing expensive 10 and 12 speed road bikes like they were standing still. I had a fury inside me that was not going to let me stop.
Day One complete – 100 miles DONE!!!!
Exhausted from the ride I joined the group that I road with, scarfing down food like I have not eaten in weeks. Making calls to the wife with the enthusiasm of a gold medal winner. “I did it baby!!!” She excitedly congratulated me and let me ramble on about my accomplishment which compared very little to the reason she did not join me at the end of day one. Our little grandson was born just a few weeks before.
Footnote: Can’t wait till he gets older I’m going to tell him he stole my thunder. Just kidding.
Anyway, the day was done and the more rest I got the stronger the Bully became. “Wholly crap my body hurts!” I exclaimed as I began to get my cot ready for a well-deserved sleep. The Bully had other plans. I laid down and closed my eyes waking in a few hours to the worst pain I had ever felt in my calf. I scared the couple lying next to me. He and his wife were very sweet and offered me suggestion to help with the pain. See they were Pro Riders and the 10 hours it took me to complete day one it only took them six. Well good for them! But again, they were sweet, their suggestions helped, and the Bully started to fade. At least that’s what I thought at the time. The rain began to fall, as well as the temperature. At around 3 am, it was 38 degrees and the rain was coming down hard. I was more afraid that they were going to cancel the race than of not being able to physically finish. Sleep eluded me and I sat there watching person after person calling it quits and taking their bike to the covered area so they could grab the bus home. 15,000 riders signed up for the race only 9,000 finished. As dawn approached, I noticed that my only jersey had fallen off the make shift hook that I made and landed in a pool of water. “Of Course!” I shook it off as well as I could and got dressed. I stood there freezing as more and more people ended their journey. The chatter inside my head began as the Bully started to take over. “It’s way to cold” “This is nuts” “I’m hurt, its freezing, no one would blame me if I quit.” But again the 20-year-old heard that the race was on despite the 35 mph winds, despite the freezing conditions, its on! “Well let’s do this.” Gotta admit the 20-year-old in my head had some guts. I gathered my bike, put on a jacket and lined up. I took black tape and wrapped the end of my fingers because I could no longer feel them. A starting gun rang out and 6 hours later I crossed that finish line and I was in Austin, Texas.
173 miles – I DID IT!!!!!! “Forget you Bully!” “You can’t stop me. At least not this time. “
On the ride home as my body relaxed, I realized that something was very wrong with my chest. A trip to the doctor revealed that I had two cracked ribs. I was actually excited about the news. Which really confused the Bully, but I just road 170 miles with two broken ribs in 35 mph winds, uphill. How awesome am I?!
I told that story because of where I am now. The perseverance, determination, training, and downright stubbornness that mixed together to accomplish this task have become so obscured and been replaced with doubt, sadness, depression and above all, the Bully.
Chapter 2 – The New Me
Around March of 2018 I started taking better care of myself and decided to go have a Well-Man’s checkup at the doctor’s office. I did not know that this visit was going to change the direction of my life.
I walked into the Doctor’s office with a happy bounce in my step. I had lost weight, felt pretty good about myself and everything was working fine. She did the blood test and checked me over. I gotta admit I walked out a little cocky knowing that everything was going to be fine. And everything was, except my cholesterol was a little high so she wanted me to come back in. “No problem,” I told her, and I explained to myself that “I’m over 40, I am a little over weight but doing better, so no problem.” I made the appointment and went about my day.
The day of the next appointment the doctor explained cholesterol and all the horrible things that could happen. In my mind, I was thinking, “She knows I rode 173 miles right?” “Not scared of a little cholesterol.” She explained that if I take a certain medication it will help bring down my cholesterol to a healthy number. “Hey no problem. One little pill, I can do that.” So I got the prescription filled, started the regimen of the pill a day, and was excited to bring down that bad oh cholesterol.
Note: Just typing that made me shiver. I want to scream at myself “DON’T DO IT.” One little pill…
You see it wasn’t the cholesterol that directly changed my life it was the medication. I have spoken to a few doctors, chatted online, even wrote to the manufactures of medicine (no response) about the side effects and activating a gene inside of someone. Now I know that sounds crazy but let me explain. When I started taking this medicine, I would start hurting all over. First it was plantar fasciitis in my right foot, then pain in my back and shoulders. My legs were so bad I was struggling to get out of the car. The Bully showed up out of no where and it was angry.
“Is this just me getting old?”
After a few weeks of this I went back to the doctor who immediately pulled me off the medication and sent me to a Rheumatologist. “A rooma what?” “A Rheumatologist” she explained. “The wide pain you are feeling isn’t normal so I’m sending you to a specialist.” Now my procrastinating self thought, “forget this I am going to let this medication get out of my system and maybe everything is going to be ok.” Again, very very wrong. The Bully is loading up for a fight. A fight much bigger than I ever expected.
The pain never went away in fact if anything it grew worse. I have never been this sore or in this much pain, something was wrong, and a specialist now sounded like a good place to go. I shopped around and made the appointment. Later that month I walk into the doctor’s office and explain what happened. She looked me over. First my eyes, then my joints and finally a blood test. “I want to run a genetic test on you” “A genetic test?” “I know who my dad is, and I don’t care about my family tree.” She laughed and said, “I want to check a few things.” I was ok with that and finished up the examine and left. I was still in a lot of pain and I couldn’t wait for her to call me.
The call came a few days later. The same doctor, who was always very sweet, had a different tone to her voice. I could tell she was in a room without any noise and she spoke slower, kinder, and even a bit worried, which caused me to be concerned. She said, “Hey James are you somewhere you can talk?” “Yes” “Got your test back and you came up positive for the HLA-B27 gene and you have what is known as Spondyloarthritis.” “What the heck is that?” She spoke again in a very unrushed sweet voice. “It’s an immune mediated disease that has many different parts to it. I believe because of your symptoms you either have Enteropathic arthritis, Reactive arthritis, or Undifferentiated arthritis. Even maybe all three.”
I sat there stunned at the news. I could see myself researching this as soon as I hung up the phone. “Is it curable?” I guess my voice was a little off because I could hear her draw a breath and exhale, “No I’m so sorry but there is no cure.” “We can try and treat inflammation as best as we can and there are some medications that slow down the progression.” I started to drift off at this point. Progression? Try?! Inflammation? As in pain? I guess the long pause made her uncomfortable, so she started talking doctor again. “Ok I need to see you later this week so we can get a plan together.” “James are you still there?” “Yes” I told her “Next week is fine.” She hung up and I quickly jumped on the computer and started researching.
“This is impossible!” “You heard me Bully, IMPOSSIBLE!!!” “No, you are not going to be a constant in this life.” “I’m going to beat this!” Again, I was so very wrong.
The more I searched online the more fearful I became. Words like Surgery, Injections, Chronic Pain kept popping up. I looked for chats and blogs online which didn’t help at all. I read “I’ve dealt with this condition for 20 years and I am on my 3rd back surgery but things are a bit better today. I was able to take myself to the bathroom.” WHAT!!!!! 3rd back surgery. What are these people talking about? Story after story I became terrified and the Bully pulled up a chair right next to me and scoffed at every attempt to find the silver lining.
The next appointment was a few days later and I was ready with a million questions. The doctor walked in and we began to discuss the diagnosis. “What confuses me the most is that you have not had ANY signs of this in the past” she said “No ma,am” I began to explain the MS-150 and that I am the guy you call to cut down a tree and dig up the base. I am a giant when it comes to work. It was just how I was raised. Pain, nope you don’t stop. Tired, nope keep going. People half my age could not keep up with me especially during the ride.
“Could the cholesterol medication have done this to me?” It’s the ONLY thing that changed recently. “No, it didn’t cause this, but it could have activated a dormant gene.” “You see this is usually something passed down through genetics.” “Usually if you have this condition, especially in men, it often shows signs in your 20’s.” I fired quickly “So it was the medication?!” I was really looking for something or someone to blame, but it really came down to just rotten luck. A few more questions later I was sent home with a prescription.
Arriving home, I looked on Facebook and joined a Spondyloarthritis support group. Story after story I became more upset. “Is this what my future is?” I asked questions to the group particularly to a woman who has been dealing with this condition for 30 years. You read correct. 30 YEARS !!!! I discussed my diagnosis and begged her for an explanation of how this could happen, how do you stop the pain, and above all is there a way to self-heal? My fingers flew hoping that she would come across with some wisdom from experience and an answer of how to overcome this.
I have never seen words written so gentle “Honey, I can tell you this.” “People are going to offer a hundred different crazy things to try.” “You are going to read about diets, keeping active, and don’t think about the pain.” “I have tried them all, I have been on about every medication out there.”
I’ll save the descriptive, yet painful list of all the meds this poor woman went through. She continued “At the end of the day, what you should know, and I am so very sorry to say. There is no cure for this.” “You are going to be in pain.” “And God willing you are going to get through it.”
My eyes started to fill up with tears as I can feel the joy of the Bully looking over my shoulder with this smirk on his face. I thanked her and wished her a pain free day. I WAS VERY UPSET !!!! I slammed my computer shut as if to say “NOT ME!”
The new prescription did nothing for the pain but caused me to feel like I was choking. Reading the side effects online I contacted the doc and she told me to immediately stop taking the meds and give it 6 weeks to get out of my system. “What do I do for pain?” “Ibuprofen or Tylenol should help some.” “Come see me in six weeks.” Ibuprofen and Tylenol is like throwing a cup of water on a forest fire. Day after day, night after night I was in this full body, incredible pain. The Bully was in full force and he was not taking any prisoners.
I laid there one night dripping in my own sweat huddled in this obscure fetal position crying to the world to please make the pain stop. “This doesn’t make sense” “This is not me!” Pictures of me crossing the finish line at the MS-150 flashed through my brain. “This can’t be happening.”
I got up and tried to walk to the bathroom and my feet hurt so bad I could not put pressure on them. I actually entertained the idea of peeing in a bottle and taking it later to the bathroom. The Bully won this night. I sat there on the edge of the couch with a full bladder and cried. Not just a little cry, a full body unconsolable cry.
“Is this the new me…?”
I sat there in the waiting room waiting for her current patient to finish. The Bully stood strong next to me grabbing my hand and trying to make me leave, this is not part of his plan, but it was part of mine. Her patient left and she turned to me greeting me with a welcoming smile and invited me in. “Just you today?” with a hesitant response “Yup just me”.
“Are you ok.” I see her eyes divert to my foot as I am limping into the room. “That’s why I’m here and want to talk about.” I explained my condition and how it was making me feel. I just kept talking. The Bully is a master of making it seem like you must bottle it all up, but Paula was my secret weapon to getting it out. She is a great Therapist and sat and listened very empathetically. “I’m getting depressed and it’s bad,” I told her. We sat and talked. I cried and explained how this could not be happening and questioned if this is the new me? She offered advice but honestly, I was so far gone that first visit I just sat there thinking, “if you only knew what was going through my mind.” You see there are things you have to be careful saying to your therapist. “I just want this to end one way or the other.” Can be extremely concerning and certain laws have to be followed. In retrospect I probably could have said that but the thought of losing my freedom due to the thoughts of taking my own life, was too much to bare. I wasn’t thinking clearly and as confusing as that can be to read just imagine sitting there yourself, the Bully at full force, and the only thing you want from ANYONE is to make the pain stop.
I returned to my Rheumatologist for another appointment and this time a different prescription was given. For some this drug works wonders, but for me NADA!!! I took it religiously without fail hoping that it was going to work eventually. Spoiler Alert, it never did. The limping became more frequent, my shoulders and back became worse and it was time to talk to the boss.
He was at the store I was working at that day and I asked if we could sit and talk. I explained my condition and he accepted my limitations quite well. What I mean by that is by this time I was having a hard time finishing a full day of work on my feet. During an inventory, 4 years ago, on my freaking birthday, because of the lack of previous management I had, I spent 24 hours at my store getting it ready and didn’t bat an eye. It needed to get done so I did it. That was the 20-year-old self showing off again. Now this same employee is only able to work 4-6 hours somedays. I was incredibly embarrassed.
After every work day I would sludge home, take a deep breath, and try to rise this broken body out of the car to just stand up. Oh, and the Bully, by the way, was laughing uncontrollably at every attempt.
Driving to work one morning I pulled over and just sat there. Lit a cigarette and could here the Bully in my head. “Why are you putting yourself through this?” “This is everyday” “Go to work start off in pain, get worse, embarrass yourself and come home in worse pain.” “Dude you are just going to become a broken hindrance to yourself, your family and your job.” I sat there about an hour knowing I was going to be late for work. But at that moment nothing really mattered. Saying out loud to a car filled with no one, well no one but the Bully, “Tomorrow it’s just going to hurt again.” Thoughts of how I could leave this world filled my head. I became obsessed with it. Reality started to creep in, and I knew that any self-harm that I would do would hurt the ones I want to protect the most. Sitting there a little longer I said to myself, “gotta still pay the bills.” I put the car in gear and drove to work.
Visit after visit whether she knew it or not Paula helped me out of the ditch that the Bully dragged me into. I can’t say that it was not one piece of advice, but the most helpful thing was that when we spoke, she did not judge me for the way I felt.
Unless I was being a Martyr. Paula if you’re reading this, I hope that made you smile. Private Joke…
It was that she allowed me to talk about the pain, the suffering, the crazy stuff going on in my head and never said, “well, you just have to do this, and it will get all better. You’ll see.”
Footnote: I can’t stand the over enthused, unrelatable infomercial crap spewing out of someone’s mouth about how you can just overcome the pain with happy thoughts, a spoon full of apple-cider vinegar, and the $19.95 DVD to help you with mind over matter.
Paula let me vent, let me cry and above all gave me a place to go that I felt able to do so. For that I am forever grateful. This condition rarely shows physical signs and people tend to believe that either you are trying to collect disability because you are too lazy to work, or you are a hypochondriac trying to get attention. Trust me, both of these couldn’t be further from the truth.
The battle of self-doubt, the images of self-harm, and the depression that follows because you are even thinking along those lines comes and goes. But I can tell you this. The Bully isn’t as strong as he thinks. Every time those thoughts come into play I try to remind myself to look for even the smallest thing to make me happy at that very moment no matter how much it hurts, no matter how lost you feel, no matter how big the Bully seems, look for the tiniest speck of happiness and hold on one more day. I’m not going to kid anyone. It doesn’t always work, but sometimes it does.
Chapter 4 – Accept what you can, forget the rest.
The day was ending like every other day. The pain grew and the Bully was eager to keep me down. I stopped at the local grocery store. Getting out of the car, like always, was incredibly painful and to top it all off, it was cold. I was in so much pain when I got to the door that I used one of those electric carts to shop with.
Again, I was so embarrassed. People were passing me with one of three looks.
Look one – “What is he using that for?” “There are people who really need that cart. Lazy jerk.”
Look two – “He is just in the way.” “Can he move a little faster?” (Electric carts don’t move around that great.)
Look three – “Oh, that poor guy I wonder what’s wrong?”
You would think that look one would be the worst but honestly look three hurt the worst. You look at me I am a healthy middle-aged guy with no visible impairment until I try to stand, walk, reach up, or really move at all. Then it becomes clear. It is really hard to explain but I wasn’t trying to keep it a secret but at the same time I didn’t want anyone to know and feel sorry for me.
I rolled around not noticing that the cart I was on was losing power until this extremely loud beeping began announcing to everyone in the store that this poor guy is on a scooter that is about to die. It was incredibly embarrassing. I wasn’t too far from the pharmacy and I noticed a cane hanging from the shelf. I grabbed one and limped to another cart. I felt so broken, so helpless that I just wanted to leave. I paid for the few items I collected and made my way to the car.
A few days later I bought a cane to help me get around. I hated doing it, but it did help. The looks continued in the order above and I started not wanting to go anywhere. The pain itself was horrible but to top it off with the crap in my head and added embarrassment was just too much.
I searched online looking for different ways to help me get around, while mentally beating myself for being this way, I came across an article about a young lady who had rheumatoid arthritis and was embracing her new life of mobile assistance.
“How dare she,” ran through my head as I scanned the page for a scooter ad, or some fancy cane made of copper that will cost more then a new car. But to my surprise it was just an article about her. “Screw it” she said. “I get stares everywhere I take my wheelchair.” “I need it for very bad days.” “I use my scooter on fun days and my cane on better days.” “Let them stare. All I know is that it hurts a little less when I accept that I need help like this.”
“WOW!!” “Who is this prophet? Preach on babygirl!”
The only embarrassment I felt at this moment was that I did not see that for myself. So, I re-did the saying for my very own. “Accept what you can, forget the rest.”
I was never embarrassed again to use my cane, park in a handicapped parking spot, or use a scooter. It helps and if you have a problem with it, just look the other way!
I started to use “Forget it,” a lot as well. “I’m hurting so much today I don’t want to call the boss and ask if I can leave a few minutes early.” Solution “Forget it” “Hey boss cutting out at 5:30 instead of 6, legs have had enough for today.” Like I said earlier, he was a cool boss and never gave me any problems over it because when I could function, I worked like crazy.
Notice toward the latter part of this, I’m not mentioning the Bully much. I’m not saying I’m not in pain, I’m not saying I have everything figured out (as you will soon see,) I am just letting you know that this small win over a very tired mental state was bigger then the Bully could be at that time.
Remember small wins, tiny things to smile about, look for something to hold on to and tomorrow will hopefully come soon.
Chapter 5 – Family and Friends
I don’t mean to back track too much to my past, but it’s gotta be done. Oh, and if you’re wondering why I haven’t really mentioned family and friends, first it’s because no matter how bad you think you are hurting them by having this condition, you are hurting so much more along with the mental anguish we all feel. I just had put myself first in the story. Now on to them.
When my daughter was around age 5, I became a single parent. Not to get into that much, but it was just me and her against the world. I was her superman, her protector, I was the guy that could work three jobs then lay on the couch and play barbie with her until my body gave out and fell asleep. She is grown now, out of college working in the medical field – Who’s a proud papa. This guy!!!!
It was just two of us until she was around ten when I met my beautiful wife Kara. She had two amazing children who with time I would love as my own. I have this amazing family with an unexpected extended family with another two sons and a daughter and now a grandson. It’s hard to explain but we kind of adopted each other. Anyways, all of them grew up seeing me fix cars, teach boxing, work on every part of the house, arrest people (my job) and basically be 100 feet tall and bulletproof.
One of the hardest things about this condition is when you realize you are not that anymore. It is incredibly painful to see the look in my children’s eyes when I CAN’T do something. To hear my son say the words “I wish I could take your pain away.”
“Wait, I am the parent.” “I am supposed to tell you that” don’t get me wrong it was the sweetest thing he could have said but the fact that it had to be said is what hurt so much.
Kara is the most amazing woman I could ever ask for but daily I worry that not being able to do what I use to do will somehow fade the knight in shining armor I once was. Please don’t laugh at that. It is very real to me. I have always stood by a saying, “Honey if you take care of me, I will take care of all of us.”
I lived by those words that nothing, absolutely nothing could stop me. If anyone in my family needed something, then I was going to achieve getting it no matter what. There was no pain, no tired, nothing would stop me. I’ve said more then once in this story. I was wrong.
My friends at work saw me pick up a 6 ft 2 crack head and slam him down putting handcuffs on him and dragging his useless self to the office to process. Seeing me more then a dozen times scuffle with bad guys twice my size overcoming them, and the arrest was made. I am good at what I do and like I said previously promoted. But now they see me limp, flinch at picking up something less than 20 lbs, and ask if someone else can do a task because I just can’t. Every day this is a mental struggle but learning to say “forget it,” has helped a little.
Really that goes with everything - family, friends, co-workers, strangers, and life in general.
I am learning to embrace this new me one step at a time. The kids are grown and pretty self-sufficient and I have faith in my wife that she loves me no matter what. It’s my Bully that rears its ugly head now and then that make me feel sorry for myself and doubt what I already know.
One small piece of advice or insight that I gained through therapy that I can share is this. If you are struggling trying to figure what is going on with all aspects of yourself, so are your loved ones. They will be distant at times, don’t chase them. Let them process this on their own, allow them to ask questions and even make mistakes. Be honest with them. No matter how much it scares you or what your Bully tells you, let them know you are scared. This hurts. You’re trying. And most importantly, some days you’re not going to be able to do some things. This is the new you.
Chapter 6 – To be continued
I hope that I did not in any way make it seem like I have all this figured out. I absolutely do not. I was going to begin writing all of this a week ago, but I developed Uveitis in my right eye, and it hurts to even type this. Two nights ago, I had a seizure for the first time that scared that heck out of Kara. Not sure what the seizure is about but I’m gonna check in with doc soon enough.
Look, every day is a struggle and the reason I’m writing this is because everything is far from ok. My eyes dredged up my Bully, my seizure made him stronger and the fear, self-doubt, and recurring depression makes him bigger. I needed to get this out. I feel that if just one person finds strength in these words, then this was worth writing. You are not alone by any stretch of the imagination. Join a support group. Go to Therapy. Include those around you with what your feeling.
Above all don’t give in to your Bully.
I’m not going to say “The End,” but “To be continued.” I’m not done yet.
Other posts by James Magdaleno
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