It’s been a hot minute. My bad, but I can’t apologize with any amount of sincerity. The Canuck in me is screaming “Sorry,” but I’ll resist my natural tendencies. After all, if you can’t be honest on the internet, where can you do it? So, to strive for transparency, honesty, and little-to-no BS, I can’t apologize.
Mostly because I have a good reason for disappearing abruptly. One minute I’m fancy-free, exploring my corner of the world, having tiny adventures, and then…Sigh. The drama. A slow-moving iceberg collides with my dingy, and I’m patching holes.
Proverbially speaking, of course. I don’t think I’ve ever been in a dingy or anywhere near an iceberg. With my luck? That’s probably for the best. It’s in everyone’s best interest that I avoid such an inevitable cliche.
My glacially slow collision with the archetypal antagonist began in December when I had some routine blood work. Things were a little off, so they sent me for some more tests that came back just as questionable. The investigation was scaled up to more invasive procedures. I had a biopsy in February, and the results confirmed the one thing every transplant recipient fears.
If you’re new, here’s a quick recap to catch you up to speed. I was diagnosed with chronic renal failure (kidney disease) when I was three years old. Since my diagnosis, I’ve had three kidney transplants and more medical complications than I can count. See, I told you there’d be drama, but let’s stop there before it devolves into a pity party, shall we?
So what’s the one word no transplant patient wants to hear? Bet you guessed it already. Yep, rejection. It’s a word that no one likes and most fear to a certain degree, but it carries more weight in certain circumstances. Like mine, for example. Hearing that word triggers an internal panic because it means that my life, for the foreseeable future, is going to suck. It also means that my life is in jeopardy. Mortal peril? Uh, perhaps, but that’s too melodramatic even for me.
As I said, I had some routine blood work, and the numbers were concerning. My renal function was deteriorating. Numbers that should be low were high, and high numbers were low. Well, damn, this ain’t good, but it’s not horrific. They weren’t that far off. Maybe it’s nothing? Maybe…hopefully…Sigh.
Thankfully my team chose caution and acted quickly. The results of my tests came back, and I got the phone call. They used the word I was fearing the most. Rejection. F**k. We needed to start treatment right away. The sooner we do, the better the odds. Posthaste my friends, posthaste
Organ rejection is caused by the immune system attacking the transplant. Unfortunately, the immune system isn’t smart enough to tell the difference between a lifesaving gift and a virus that shut the world down for a couple of years. It sees a foreign entity, and it attacks.
Like some people I know, but I digress.
To stop the attack, we had to wipe out the immune system and slowly restart it. Yep, it’s about as much fun as it sounds. It started with three days of intravenous Pulse Therapy. They injected horrible and powerful drugs into the body. The immune system went night-night, and things began to suck.
The actual treatment doesn’t take long. It’s a thirty-minute visit to an outpatient treatment centre. When I was a kid, I was admitted to the hospital for three to four weeks to have this done. Yay, modern medicine!
The side effects hit me hard and fast. As I walked out of the hospital after the first treatment, my whole body started to shake. My legs felt like they were crumbling beneath me. It felt like all the heat had evaporated, and I couldn’t stop shivering. I swear I could feel the earth rotating on its axis. Muscle aches and headaches came next. Then I felt an overwhelming exhaustion. That was overridden by a restlessness that felt like ants were crawling through my veins.
Once the three days of IV treatment ended, we switched to oral medication. High doses of a steroid called Prednisone. This might sound a bit hyperbolic, but this is the worst, cruelest, most evil medication ever developed. It’s just plain mean. Whoever created it should be thanked and then cursed repeatedly.
Here are some of the most common side effects: Insomnia, nausea, muscle aches, aggression, trouble thinking and speaking, dizziness…The list is too long. It’s mean, and I hate it so very much. Hate isn’t even a strong enough word. There’s no word strong enough to describe how much I loathe this bloody medication that’s saving my life.
Most of all, I hate how my life has come to a complete stop. I can’t function. I can’t think. I’m bored, and I feel useless. I feel unproductive, but when I try to do something, the pain and exhaustion become too overwhelming. Just writing this much has taken me over a week.
It’s necessary, and it’s working. My last test results were almost back to normal, so we caught it in time. We stopped this from becoming so much worse. It’s working, and I’m so thankful there are treatments available. Without them, this would be a goodbye letter rather than whatever this is.
It sucks, but the suck will be worth it when the treatment is done. They just started weening me off the Prednisone. That’s a slow process. They don’t want to take me off the medication too soon and risk a relapse, so slow and steady. Again, it’s necessary, and I’ll do whatever I need to, but I hate it so much.
And I hate my body for doing this to me.
It’s not something we’re supposed to admit. People want inspiration porn and body positivity. We want the Fight Song to play in the background as the hero overcomes adversity. I’m not crying. I have allergies. Go little rock star and all of that.
Of course, I enjoy those videos as much as you do. Cheesy, sure, but look at em go. Good on ya! Excuse me, I need to dab away these allergies
Heaven forbid someone shatters the moment. Don’t you dare openly admit something that should never be said out loud. No, don’t do it. Don’t… I hate my body. Despise it. Loath it. If I could switch it out for a new one, I would. There are moments when I would give anything to stop the creation of this body.
On an unrelated note, does anyone have a time machine I could borrow for a couple of hours?
It goes against convention, and I’m gonna get some pushback. Thank you, I know you mean well. You’re trying to hype me up. The sentiment is very much appreciated. However, it’s not necessary. I’m perfectly content admitting my displeasure because, right now, my body is hurting me.
It’s betraying its own best interests and actively trying to kill me. The medication I’m taking is borderline (if not all the way across the line) toxic, and it’s taking its toll on my physical and mental well-being. One is necessary to stop the other, but I’m tired, sore, and over it.
I’m spent. I’m done. I can’t eat. I can’t sleep. I can’t leave my home because my immune system is non-existent. I’m lonely. I’m exhausted. I hate my body, and that’s okay. It’s a natural response to a terrible situation because there’s no fight song playing in the background of my real life.
This is the part that’s left out of those videos. It’s the one we don’t talk about. No one wants to know about the 4 AM cry sessions or the pity party at noon. We want to know about the triumphs of our heroes because if they can overcome that, then maybe we stand a chance.
Maybe it’s just me, but watching the hero’s journey leaves me with mixed feelings. I’m happy for them, they’re inspiring, but when the dopamine wears off? I feel a little more alone and weaker. I’m not that strong or brave right now. I’m struggling to do the simplest things. These words are coming out like molasses. My fingers are tapping the keyboard like it’s their first time. I’m not the hero of my story.
I don’t have the energy to try. How can I relate to what I just watched?
While I enjoy watching inspirational videos, the stories that I admire are the ones that say it like it is. They’re vulnerable and honest. They don’t use a pretty filter or hype music. They’re raw and broken. Tears are running down their cheeks. They use their sleeves to wipe their noses if they bother wiping them at all. They dare to show their reality as they’re experiencing it. No glam. No frills. Just their truth in that moment.
Instead of writing another one of those posts about triumph over adversity, I’m following their lead. I hate my body right now. I hate my mind. I don’t want to do this anymore. I can’t do this. I’m not strong enough. I’m tired. This is my reality in this moment.
It’s going to be my reality for a little longer. While my blood levels are returning to normal, it has some work to do. They’ve lowered the Prednisone a bit, and if all goes well, they’ll decrease it again in a few weeks. I’m healing, but I’m not healed. It’s going to take time, but hopefully, this suck will be worth it.
Until then? I’ll hold on with white knuckles and hope tomorrow will be a bit better.
As for this blog, I have some posts that were written before this all started that I’ll try to post soon. After that? I’ll try to enjoy the good days and get out a bit.
Safe travels, friends.
I don’t even know what to say, other than what a horrible ordeal, and I’m sorry you’re going through this. Hoping the treatment works and your body begins to heal.