Week One – February 12, 2022
What a whirlwind of a week. When I first walked into the clinic, I was overwhelmed with how much activity was happening. It wasn’t the silence of a waiting room I’d been used to, and immediately I knew that the @speroclinic was going to be a very different experience. The doctors have been so helpful and actually know what they’re talking about, which is refreshing. I was immediately diagnosed with EDS, which was also a bit of a shock. My spine is out of whack and overcompensating is various directions and the allodynia in my right arm is very high. There’s a lot of work to be done.
This week I’ve met so many wonderful people from all walks of life. I’ve seen struggles and triumphs. I myself have felt relief in my hip and knee, which truly blew my mind. The technology the clinic uses is INCREDIBLE. Truly, mind-blowing. It’s only been a week and already I can feel my body reacting to the treatments. I am so, so grateful to be here.
On day two something else came up while I was shuffling from one appointment to the next. It was excitement. I feel so freaking excited to be here. I feel hopeful and determined. For those of you who know me well you know I love a good challenge. And here, I have found the greatest of challenges staring me in the eyes. Something Dr. K said to me on day one was that in order for this treatment to really work, I have to trust them. Trust the process. She said they are the Sherpa leading me up Everest. And to that, I felt only one thing: adrenaline. I’m absolutely pumped to be here and to do this. Pain, flare ups, good days/bad days, it’s all a part of the process.
So whatever it is you’re dealing with and feeling overwhelmed by, make a decision to dig deep. The power to make life into whatever you want it to be is yours. And as for me, I’m choosing to climb Everest.
Week Two – February 20, 2022
Exhausted. Exhilarated. These are the words of the week. I thought I had mentally prepared for the deep struggle, the rollercoaster, the five steps forward three steps back process, but I have been deeply humbled this week.
I am a people pleaser. I don’t like to rock the boat. I don’t like confrontation. I pretend to be superwoman. I try to do it all. But this week, CRPS and EDS got the best of me. I had committed myself to a writing project that I ultimately couldn’t finish. I physically and mentally was at zero. This week has been extremely difficult. Between adjusting my diet to get more protein in my meals, to nearly passing out from the pain in a treatment, to having a meltdown…I would say this week got the best of me. In an effort to put myself and my healing first, I bowed out of the writing project and a great deal of guilt and disappointment flooded me for failing.
And it was a failure. I failed. And it’s okay. I’m okay. The world didn’t end. I didn’t crumble to ash. I failed and it’s okay. The relief from that realization rocked me. Of course, I’ve failed before, many times, but when I give my word to do something, I always pull through. Because if I don’t…I risk disappointing people and I really hate doing that. But I failed and it’s okay. For something so simple, it was a lesson I never wanted to learn. I strive for perfection. I strive toward big goals and aspirations. I always will. I’m a Virgo. But sometimes failing isn’t actually a failure, it’s a lesson. As one of the doctors put it, “Stop being so worried about disappointing people. Be kinder to yourself.”
Week Five – March 11, 2022
If there’s one thing treatment has taught me, it’s that heart can be the difference between success and defeat. My home for now is in Arkansas, here at the Spero Clinic, where everyday I come in filled with determination. My days begin with neuromuscular reeducation, where my mind and body are both tested to their limits. How much pain can I handle before passing out? How much am I willing to lean into the misery? How much perseverance is in my heart? Daily, I ask myself these questions. And daily, I answer them with three words: let’s do this.
As I find myself pushing my body more and more, I come face-to-face with the shining beacon of hope that is pain relief. Even as I experience those often brief respites, it gives me hope that all of this effort will pay off. That the sacrifices mean something. That they have purpose. And that enduring the excruciating pain that is scar tissue breakdown, means the difference between being able to push my body even more the next day. That oxygen therapy, cold laser therapy, non-invasive neuromodulation, and vagus nerve adjustments are all worth it. Every single piece of the puzzle matters, just like every single therapy matters. As though instruments on their own are nothing compared to the combination of sounds that create a great symphony.
Every part influences the next and the next and the next etc. etc. etc.
Heart. Drive. Determination. CRPS is a monster of a disease. So today, tomorrow, and the next I will continue to show up, and despite the exhaustion, I will firmly grasp ahold of my grit and utter those three words.
Let’s do this.
Week Eight – March 31, 2022
So the last 48hrs has been BRUTAL. Under the supervision of several doctors, I am slowly beginning to taper off my meds and will continue to do so for the next six weeks. With that being said…HOLY FU*KING HELL!!! The withdrawal is horrendous. Yesterday I took 3 showers because I was crawling out of my skin, I felt so itchy and oily, like bugs crawling all over my skin and all I wanted to do was keep scrubbing. My body temp goes hot/cold/hot/cold all day. Runny nose. Light sensitivity. Sweat. So much sweat. Zero appetite. Extreme pain. Nausea. Constantly feeling aggravated. It’s been rough…
I’ve been on a LOT of medication for years now and I knew it was going to suck when I began reducing my meds, but wow. Just…wow. This afternoon I’ve been feeling a bit more myself, but I know with each weekly reduction, my body is going to flip out on me. Just another part of healing.
Now more than ever, treatment has become a battle of wills.
Week Nine – April 7, 2022
This was a tough week. Started out the week in a ton of pain, loads of withdrawal symptoms, and the ever-horrible process of getting my ulnar bone back into the elbow socket. I genuinely mean it when I say, I can’t talk about that part. Dislocating is horrendous.
The ARP Wave machine sends a stimulation that is so intense that my pain becomes background noise. It’s seriously the craziest thing. We’ve begun using a glove that gets attached to an electrode which sends freakishly strong stimulation into my hand and fingers, while also including a second ARP Wave machine for my arms. Trying to hold a pen and write, while fighting incredibly strong electro-currents that want to essentially make my hand seize is…not fun. It’s necessary, but really really really not fun. But VERY necessary.
Then tack on withdrawal and exhaustion and tada…the perfect combo for someone who is absolutely spent. I always give my all. No wasted days. No slacking in treatment because I feel like I’m falling apart. I show up and I do the work. Always. But I am beginning to fade.
Week Ten – April 14, 2022
I can’t talk about it.
Withdrawal is a nightmare.
Week Eleven – April 23, 2022
This week was by far the hardest week at the clinic for me. I’m off meds and detoxing really hard for the last few weeks (been living on applesauce for the most part, because everything else makes me so nauseous I throw up), migraines, sweating, I’ve dropped quite a bit of weight, light sensitivities, & so so so nauseous all the time. Then…I dislocated my elbow for the 3rd time and it took a hell of a lot to get both bones that connect at the elbow back into place. Insane amounts of pain from that, which flooded into my hand and pissed off the CRPS pain.
I’ve had several of the doctors tell me the exact same thing this week…stop ignoring the pain. Let me explain why. When I dislocated my elbow again, instead of immediately seeking medical attention, I ignored it. I told myself the pain wasn’t that bad and maybe my elbow would kind of right itself on its own. Yes, I know how stupid that sounds, but I am a stubborn dumbass that was hoping I wouldn’t have to get my elbow adjusted again. But by ignoring the pain until it got SO BAD that I was shaking because it was so excruciating, I did far more damage.
I despise whining. It drives me nuts. I have an inner drill sergeant in my mind that tells me to constantly keep pushing, work harder, ignore the pain, shut up and fight. There’s a time and place for that mindset, but this week was not the time. It’s a delicate balance between acknowledging pain and not allowing pain to control. For me, the lesson is to be kinder to myself and stop ignoring the pain. Acknowledge, fix, improve. I’m frustrated with myself for not listening to my body sooner, but oh well. All a part of the learning experience.
Week Fourteen – May 14, 2022
I am eternally grateful for what The Spero Clinic was able to do for me. I went into treatment unable to move my right arm and unable to drive because of the knee and hip pain. I was in excruciating daily pain, the brain fog was so bad I could hardly focus on reading, writing was next to impossible, and I was throwing up a lot. After 14 weeks of incredibly intense treatment, I feel like I have my life back. It’s surreal. Almost hard to believe sometimes. I still have some pain, but it’s nothing compared to what it used to be. I came home and felt…odd. Like a stranger in my own life. Prior to treatment I had begun to believe that I had no future. That the goals and dreams I had for myself no longer were possible. That my life was nearing the end. Spero changed everything.
The doctors and therapists at the clinic focus on the whole person, not just the disease. They healed my body, healed my mind, and healed my heart. It’s wild to go from not having a future to now having the opportunity to dream again. The feeling is overwhelming. Almost hard to explain. So now what? I feel like I’ve been given a second chance. A beautiful, gorgeous second chance to live, truly LIVE.
So that is exactly what I’m going to do.