It’s been a while since I’ve blogged about my psoriatic arthritis.
Mostly because I had been doing so well – I didn’t really have anything that I needed to update you on.
But, I have a confession to make. It’s pretty hard for me to say this, but the last few months have been rough.
Rough enough that it brought me to my knees while putting away groceries, in tears, clutching a cucumber because the coldness of it helped bring relief to my hands. (in the moment I definitely wasn’t laughing, but looking back it’s kinda funny. Reminds me of when Elizabeth Gilbert described her moment in her bathroom when she fell to her knees asking for help in Eat Pray Love)
Of course I kept thinking, why?! WHY WHY WHY!!
Is it because I jinxed myself and I wrote an article about how I moved towards living life without medication for HealthCentral?
Is it because of something I did or because I slipped up and now I’m in this situation?
Or is it just the ebb flow of life with chronic illness?
My PsA Update
I think medication is great, it really helps us manage life, but it doesn’t get down to the root cause of our problems. That is my biggest beef with modern, western medicine.
So, for the last few years, I’ve worked with my doctors to get to my root cause, and get to a place where I could transition off of my medications. Read more about that here.
In February 2015, I took my last took Humira injection. In July 2015, I took my last pain pill consistently. Since then, I haven’t been on any medications for my conditions, except for an occasional pain pill here and there.
In the year+ I’ve been off medication, I was doing great! Honestly, really, really well.
I felt like every month I was getting better and better and better. That’s why in the beginning of 2016, I talked to my doctor about getting back to work.
Then, in February 2016, I got a virus and feel like I’ve yet to completely recover from it.
In March, I started back to work part-time. The plan was to start part-time and then ramp up to full-time after 6 months.
I’m so glad that I started part-time, because I have been having issues.
My hands really started bothering me, my energy started going up-and-down, and my body started retaining weight and water. (I’m up 10 pounds since last year!!) My periods began to fluctuate, my face broke out, and my activities started to have to be modified. I started physical & occupational therapy, had to bump up my supplements and, honestly, stopped being as social as I had been because on my off time I just need to REST.
. . . It’s been an adjustment. One that I have not been too excited about.
I can’t lie – in the back of my mind I was so worried about this happening.
And I don’t think they were irrational fears to have. Every change in our lives can be nerve-racking – regardless if they’re for the positive or negative.
When I mentioned this to a friend at the beginning of the year, he actually got pretty upset with me and said “Julie, you’re not sick anymore. Stop thinking that you’re sick and start thinking that you can live a normal life.”
And it really upset me for a few reasons. . .
- I don’t think of myself as a sick person
- I don’t define who I am by my diagnosis
- I don’t use my health has an excuse and live as normal of a life as I can
I was upset that someone in my life thought that I was using my health as an excuse.
Having a chronic condition isn’t an excuse! And I do not let it hinder me from living a life I love.
BUT, that being said, having a chronic condition FORCES me to pace myself. FORCES me to put my health first and FORCES me to do what’s right for me.
I don’t think of myself as not being able to live a normal life. I enjoy my life, however different it may be from what I thought it would be.
But I believe that it’s not abnormal to have had these worries in the back of my mind. I mean, chronic conditions can be so unpredictable that you never know what’s going to happen.
So, since March, the stress of getting back into a normal schedule, being on my computer a lot and putting stress on my weak joints and having to juggle a lot more than I did before – it’s been wearing on me.
What Have I Been Doing To Help Manage?
Check out this HealthCentral post I wrote about all of the ways I’m managing my hand and wrist pain.
But to give you the highlights:
I still am insane with my diet. These days I’m only eating fruits, veggies and nuts & seeds. (I am contemplating adding back the occasional seafood, but will only visit that once I’m 100% over this flare and have been stable for a decent time period)
I avoid all toxins that I can in products that I use.
I upped my supplements and take extra curcumin (it’s better than ibuprofen!!), NAC, Zinc, Vitamin C, L-lysine and slather on deep blue like it’s my job.
I make sure to get my daily meditation on (I’m actually at 243 consecutive days on the Headspace app so far this year! Not gonna lie, I’m pretty pumped about that and trying to make it 365 straight days of doing a meditation on the app!)
I teach yoga twice a week, I try to get on my mat other days and I’ve been going to physical therapy twice a week. I have a calendar which I note what movement/exercises I do each day. I want to make sure that I keep my body moving. Motion is lotion!!
I started going to occupational therapy twice a week to help my hands and let me tell you – I never want to stop! Between the fluidotherapy, ultrasound and massages, it’s like heaven on earth for my hands. I always leave there feeling great, but then the pain starts to set back in once I get on my phone or computer.
In addition to my OT appointments, I started getting a manual lymph drainage massage weekly (at least to start) to get my lymphatic system moving and grooving!
I go to acupuncture once a week and have been going to my chiropractor monthly.
I limit my electronic use. If you’ve wondered why I haven’t been posting on my blog or social channels as much – this is why! Whenever I’m not working, I give my hands a rest. Using my phone and computer are the two biggest causes I see of hand pain.
And I make sure to rest whenever I can. Most evenings you can find me at home, chillin’.
Working on my health has been my full-time job for the past few years and that hasn’t changed since going back to work. It’s still my number one priority. If I can’t keep it in check, then how can I do anything else in my life?
Health Is Wealth.
Without it, all the money in the world doesn’t matter.
So, I may not be working full-time just yet – but my life is busy, busy, busssssyyyyyyyyy. With everything I am doing, I feel like I have 3 full times jobs!
Self Inflicted Guilt
But I can’t lie and say I’m not frustrated.
I’m frustrated that my hands hurt.
I’m frustrated that I was so well-managed and now, that I have stress in my life, I’m having difficulty managing it.
I’m frustrated because I feel like it’s my fault.
And guess what, I’m not the only person that feels like this. I bet some of you out there can completely understand what I feel like right now. To have managed your disease for a while, only to start having problems and see yourself moving backwards.
I often feel because I am a health coach, and help other people deal with their chronic conditions, I’m not allowed to have flare ups.
But those are unrealistic expectations I put on myself.
We all have bad days.
We all have flare ups.
We all have days where we don’t feel well.
We all have days where we just don’t want to deal with what we’ve been dealt.
We all have days where we want to be lazy and not move.
Being a holistic health coach doesn’t exempt me from that.
Also, being off medication, doesn’t exempt me from having bad days as well.
As of now, there’s no known cure for autoimmune conditions such as psoriatic arthritis. So, it’s a little crazy for me to think that I will never have flare ups.
And that’s exactly what I have been going on.
I’ve definitely been having a flare up of my arthritis.
I was reading over some of my old posts the other evening and came across a good one. (read it here)
I was talking about how we all have good and bad days and how all we can do is TRY OUR BEST. It’s funny because as I read it I though, “well, shit Julie. This is some good advice. Maybe you should listen to yourself once in a while!” haha
I apologize that I haven’t been posting on my blog as much as I usually do, but I am taking care of myself.
In order to be able to give to all of my chronically fabulous patients, my clients, my work, my friends, and my family, I have to make sure that I take care of myself first. We all must make sure that we take care of ourselves first.
I’m sorry if during this time it’s been hard to get in contact with me. My social channels and emails have become less a priority for me as resting my hands in numero uno!
So, inspired by myself from an old post that I wrote, I’d like to leave you with just one thought.
We all have ups and downs. We all have great days and we all have bad days.
In the end, it’s all a matter of our perspective whether we think the overall picture is good or bad.
What makes pain, bad? What makes no pain, good? Our minds make up how we see things.
It’s easy to point out, but it can be very hard in the moment. But. . .
We have to give ourselves love, we have to remember we’re doing the best that we can, and we have to keep on fighting.
Never giving up.
Never letting go of the hope and faith.
And always realizing that were never alone.
It’s in times like these I REALLY remember why I’m such an advocate for patients.
If you’re fighting and having a day where you’re down in the dumps and not feeling well, just know that you’re not alone. There are many of us fighting chronic illnesses out there. Please, don’t hesitate to reach out to us (especially me) during these times. Let’s draw on the strength of each other to help us make it through our tough days.
Because after all – it’s just a bad day, NOT a bad life 😉
Wishing You A Pain Free Day!