It seems that my most personal posts are always my longest. Sorry, this is so long, but writing this was as much therapeutic for me as I hope it is helpful for anyone who reads it and deals with the daily struggles of autoimmune arthritis.
This month I had my 6 month check up with my rheumatologist. I’m not sure how I envisioned my appointment going, but I left pretty bummed out.
Full disclosure, I cried in my car after.
The past year, I started having a lot of problems with my hands, I’ve been normal people sick more than usual (I’m not immunosuppressed) and I’ve had a recurring infection that won’t go away. (read about a big flare up in August here)
I left my rheum appointment with scripts for a shit ton of blood work, scripts for x-rays on my hands/wrists and my SI joints, a script for continuing OT and . . . a starter pack for Otezla.
Update: X-rays have come back and there is nothing wrong with my hands or SI joints. No damage or degeneration. My left SI joint has slight sclerosis, though – but it’s been like that.
A Brief History Of How I Got To This Point
The day I took my last pain med was a pretty monumental day for me. Up til that point, I had been on countless drugs (pills, injections, creams, you name it) and I was sick of it. It pretty much seemed that every side effect a new drug brought out, a new script was made. (Read: How many are too many pills?)
I was FED UP. Honestly, it got to the point where I wanted to SCREAM.
If I mentioned a symptom, it was greeted with a “well, I could give you a prescription for x” or if I mentioned about fatigue “well, I’m not sure there’s much I can do for you. Just stay on the Humira and in time, with movement, you’ll have more energy.”
I just wanted to scream. . .
THAT’S NOT THE ANSWER I’M LOOKING FOR.
MEDICINE IS NOT ALWAYS THE ANSWER!
I’M NOT EVEN 30, I’M NOT GIVING UP ON LIFE.
GIVE ME A DIFFERENT ANSWER.
When no one really wanted to give me a different answer, I went out in search of it.
I started watching and reading other patient’s stories online. I began to interact more with them on twitter chats and in facebook groups. I read books. I took classes. I began to challenge my doctors (in a good way) asking questions that other patients asked or brought up.
Although, I knew that at the end of the day, my ability to gain health and wellness laid with me.
NO ONE ELSE was going to help me get there.
I had an invaluable resource at my disposal when I started on this journey myself. My mom had kept a medical file on me since I was a baby. I started pouring over all of her notes – antibiotics, sinus infections, knee flare ups, pt, migraines, stomach issues, ear infections, rashes, adenoidectomy, vocal nodules, lack of energy . . . I started seeing patterns. I started to be able to connect the dots in my health journey.
It was CLEAR AS DAY to me what was going on. No, I hadn’t developed psoriatic arthritis in my 20’s – this was something that had been going on since I was 12. Maybe even earlier than that.
I knew there was a better way of living and I was determined to find it.
So, I made a healing plan. It was pretty in-depth, but basically, I knew I had to commit to myself to make any change necessary. I had to have a trusted team of advisors by my side. And I knew I had to use my health data to crack the code of my health.
Food, supplements, toxins, movement, meditation – all of these things became my obsession. And not just independent of each other, but how they all interacted with each other.
I was a sponge. I wanted to learn everything and anything I could to help myself heal. And in the process, help others heal too.
I’ll admit it – I became a data tracking, data analyzing, health-focused nut job.
I made my own pain scale to accurately depict how I was feeling. I tracked where my pain was, gi issues, what time I woke up, how long it took me to get moving, if I left my house, and if I left my house where did I go, who did I interact with, what was my mood like. Did I have a doctor’s appointment? How long was it? Did I take my meds? What time did I take my meds? What did I eat? How many steps (or crutches) did I take? What was my fatigue like? Did I do any alternative therapies?
AND THIS IS JUST A SUBSET OF IT ALL!
I made spreadsheets on top of spreadsheets. Bar graphs. Pie charts. Color coded documents, google surveys so I could just fill out my symptoms on my iPad.
I WENT NUTS.
And guess what? It all freaking made sense.
Every piece of data I collected, put together, made perfect sense. I was able to see what caused inflammation. What sucked my energy. Why some days I could crutch up the steps relatively easily and why others it felt like those 10 steps were Mt. Everest.
And through it all, I went back to school to get certified in holistic health coaching. A little while later, I went and obtained my 200-hour yoga teacher training.
The more I learned, the better I got. And the better I got, the more I detoxed off of meds.
- Folic Acid
All of the meds started to go away. But I still had 2 big ones left. Humira and Vicodin.
Humira I stopped in February 2015 because I had to. I had a stem cell procedure done in March 2015 and I was not allowed to be on an immunosuppresant for it. Because I had been doing SO well, I used it as a trial run to see if I could live without meds.
And not only could I live without the meds, I THRIVED WITHOUT THEM. Honestly, 2015 I felt fantastic. I felt so freaking fantastic. (Read about it here)
And the icing on the cake? I got off crutches and that summer I took my last consistent pain pill.
That meant, from October 2013 to Summer of 2015 I had successfully changed my life enough to GET OFF ALL OF MY FREAKING MEDS.
I think that’s one of the proudest moments of my life so far. To go from being so far buried, to standing on top of the mountain. It makes me tear up just thinking about it.
Since then, so many changes have happened in my life. I was able to get back to working, I was able to get back to LIVING.
And crazily enough, I had the opportunity to give a presentation at Stanford Medicine X this year on my whole journey to creating a treatment plan for my psoriatic arthritis. It was a pretty surreal moment to have doctors asking ME for advice. Honestly, 2016 was a fantastic year for me – read the highlights here!
As I got back into a routine, I started feeling the effects of working + autoimmune. My hands, not feeling well, fatigue – it started coming back a bit. I still keep a strict diet and focus on the 5 parts of my treatment plan (start with #1 here and they all link together)
And that brings me to now. Sitting here with scripts and an Otezla starter pack.
So, what happened?
I don’t know.
I don’t know what happened. And to be quite frank, it frustrates the hell out of me.
Why are my hands giving me SUCH trouble? Why do I feel like I’m starting to slide backward? I eat so strict, I do yoga, I meditate, I have a ridiculous supplement list. . . WHY WHY WHY!?!?!?!?!?!??!?!?!!?!?!?!?!?!? (seriously, why?!)
To go back and pour over the data. To collect new data. To try to figure out why this year my hands have started to bother me so much to the point where I can’t even write in my journal anymore . . . it honestly tears me up inside.
And for the last year, I’ve kept making excuses. Making excuses of why I didn’t want to get back on meds. Making excuses because I knew I could figure out the root cause of my hands flaring.
I just had to. . . I did it before, why would this be any different?
I thought: My hands MUST be flaring up because of food. So, I changed my diet even more.
I thought: It must be stress! So, I added in acupuncture and tried my best to have quiet time each day.
I thought: I just need to be patient and give my supplements time to really kick in. So, I gave myself a deadline. I gave myself ’til September 2016 and told myself that if I still had hand problems then, I’d go back on meds.
August came and brought a HUGE flare up of my arthritis. . . which then subsequently brought September. One would think after the August I had, that I would have jumped at the fact to get back on meds.
But I didn’t.
Here’s The Truth . . .
I was scared.
I AM SCARED.
I am scared to look like a failure. I am scared to look like I’m a fraud and didn’t know what I was talking about. I mean my platform here is about using diet and lifestyle, right!?
I am scared because the day I got off all my meds was one of my proudest days of my life. How can I accept going backward?
So, I’ve been avoiding it.
Starting OT, getting compression gloves, buying a talk to text software – I started to do everything and anything I could do to manage my hand pain.
Then, I went to the ACR in November 2016. I pretty much left DC scared shitless of what may happen to may hands. Literally, when I walked in the door of my house I broke down crying to my parents. Ask them, they can verify!
So again, you’d think that I’d call my doctor and get back on meds.
Again, I didn’t want to admit to myself that I didn’t have the answers. That I couldn’t figure it out on my own.
Honestly, I know I can heal myself. I know I can. You may think that’s crazy, but I whole heartedly believe it. 100% And I swear to God (you can mark my words and call me on it) that one day I will cure myself of this condition. I WILL.
And it kills me, KILLS ME, inside to admit that I may need meds. The reason it kills me is because I don’t believe that meds are helping me fight the root cause of my psoriatic arthritis. I think they’re covering up symptoms and perhaps even feeding the root problem.
So now, I’m at a crossroads. Do I take the starter pack and embark on a life with meds again? Or do I keep making excuses and not listen to the cues my body are giving me.
I can’t lie and not say that I haven’t thought “failure” so many times over the last few days.
You failed Julie.
You tried and you failed.
I know deep down that this is an asinine comment. That it’s not MY fault. But because of the work I’ve put in. Because of the countless days I spent in bed, trying to figure this all out. I finally felt like I had the magic key. That I knew the answer that no other doctor could tell me.
But when I think about everything I’ve done. Everything I’ve preached over the last few years. Everything I’ve worked towards. . . I’m being SUCH A FREAKING HYPOCRITE!
Every patient I talk to, every time I teach yoga – I always say LISTEN TO YOUR BODY. Your body is so smart and it’s always trying to tell you what you need to do.
And here I am, suppressing my body. Suppressing what my body is trying to tell me. I’m sure if it could talk it’d say
“JULIE! WHY AREN’T YOU LISTENING TO ME?! I’M TRYING TO TELL YOU, YOU NEED HELP, BUT YOU’RE IGNORING MY SIGNS.”
It just goes to show, you can decide one day that you want to live your best life and that you’re going to do everything you possibly can to do that – but it’s a decision you have to make every, single, day. You can’t just decide it and go on autopilot for the rest of your life.
So you know what. My ego needs to be taken out of this equation.
My flare up has nothing to do with my lack of effort. It has nothing to do with my lack of smarts, ability to solve a challenge or my need to be portrayed one way or another.
It has everything to do with my body. And I have to trust that I’m being guided down the right path, to the right end point. If I put my trust in myself, of course, I’m going to worry. Of course, I’m going to freak out. Of course, I’m going to doubt! I need to place my trust in love and God and realize that I don’t always have the answer.
But, that doesn’t mean I won’t stop fighting. That doesn’t mean I won’t stop searching for an answer. That doesn’t mean that my life ends with taking a medication.
Nope. In fact, perhaps taking this med, along with all of the other work I’ve done, will help me find that cure I’m searching for.
So in the end. . .
I believe the right thing to do is to take the meds. Holistic health doesn’t ALWAYS have to mean “all natural”. Holistic means listening to your body and EVERY ASPECT of your life. That could mean taking medication or it could mean not taking it.
My holistic view of my life right now seems to be needing medication.
And if I practice what I preach, I need to listen to my body and embrace my health holistically.
I’m not a failure.
I’m not a fraud.
I’m a human. A human trying to live the best life she can while living on earth.
PS. Have you tried, or are you on, Otezla? If so, I’d love to hear your experience! Feel free to leave any info you feel comfortable sharing in the comments below.
Click here to start with Day 0 of my Otezla journey and follow the posts through my thoughts and reactions.
Wishing You A Pain Free Day!