Spondylo-WHAT? Spondyloarthritis…. A word I’d heard for the first time in February 2015 – A word that had given me an explanation to years and years of unexplained arthritis, joint inflammation, extreme fatigue and pain.
I’d known something was really wrong with my body for quite some time. I’ve always been one to push through pain and hope for the best. I really hate asking for help with just about anything… yep, I am a control freak – and that includes being in control of my health. But it had gotten to a point where I could no longer continue in the pain I was in and I started seeking answers.
For years I have had really bad knees… not kidding – 13 knee surgeries later and I’d been thinking I had “bad luck” and kept injuring my knees playing soccer. I had been diagnosed with severe osteoarthritis in both knees and have managed the pain as best I could with Advil and some shots. All along I’d still been able to work-out and remain active, but I did have to modify a whole bunch.
This was me almost 2 years ago. Doing squats with my son, Quinn, who was about 3-years-old at the time.
I was still able to do about 2-3 leg workouts each week but had to modify a lot and really watch myself. A couple months after this video was taken I started to really have some trouble in my left hip which lead to a total hip replacement this past August 2016. It was a very fast decline in my hip. I couldn’t work out with my legs at all and my hip flexor had gotten so bad that most days I had to lift my leg up to get into the car.
Over the past year life had certainly changed. Daily tasks that were quite simple in years past proved to be very challenging and often very frustrating. Walking up steps, getting in and out of the car, grocery shopping, shaving in the shower, brushing hair, and sleeping have all become quite challenging.
There were few days I could walk up our stairs alternating legs; however, most days I had to step up with my “good leg” and then bring my left leg up to meet it. I couldn’t usually step up and lift my weight up onto the step with my bad leg. The handrail has taken the brunt of most of my weight as I was bringing my bad leg up. It was very awkward and a bit wobbly, but I got upstairs. Of course we have a 2-story house so our steps are very steep and there are many. Hahah super, I know.
There had been many times that I scooted up the steps backwards on my butt. And a couple times Quinn had fallen asleep on the way home and needed carried into the house – Charlie was outta town for work, and once I’d gotten home I realized I had 2 choices… wake Quinn up and have him walk in or figure out how to carry him in and up.
Most of you already guessed it, I carried him in. Once I got into the house I sat down on the bottom step and just held him there. It was in those moments that the reality of my health “situation” really got me feeling frustrated and upset. It was also usually the time that I began crying quietly and feeling really crappy about my inability to carry my own son upstairs to tuck him into bed. I got really angry about my health and my frustration often came out as tears.
One time Addi sat next to me on the bottom step as I cried. I don’t often like her to know how much I am struggling –and I just don’t like her to be worried about me. But there are times I just can’t help her from seeing me upset because she is right there in the moment with me. She sat next to me and gave me a hug. It was all I needed to get off the sorry-for-myself struggle bus and begin my scoot upstairs. One step at a time, I’d push up with my good leg and scoot. We made it to the top. I couldn’t stand up once I got upstairs, so I scooted all the way to the bed where I laid Quinn down. The grin on Addison’s face once I laid him down was priceless. “You did it, Mama.” She said in a soft voice. “Yea, bubba, we did it.”
Often times I do what I feel is better for my kids and not me. I don’t regret doing that one bit. I am a parent and I am certain that many other parents can relate. We do for them even when we feel defeated.
There are mornings I cannot open my hands all the way or stretch out my fingers for about an hour after waking up. And although I usually spill my coffee all over the floor as I try to carry it upstairs and look at all of the tons of things I’d love to be doing on my computer like crafting cool blog posts or facebook posts I just have to wait it out and allow my hands time to move fluid through. It takes about an hour to get my hands working ok each morning. Sometimes it’s ok and other days it’s not – just depends what work I have to get done that morning.
I’ve taught Addi how to brush her hair out to the point that I just need to pull it into a ponytail. Yes, many kids her age already do their own hair. I get it, it’s no big deal. But it’s a big deal to me that many mornings I cannot help her do her hair until the very last minutes before she leaves. She doesn’t know that my hands don’t really work in the morning, so it’s no big deal to her. But to me it is a very big deal that I sometimes feel as if I cannot provide basic care for my kids.
Bathing Quinn had also become a serious struggle. I use a cool stool now and get it done. But for a long time Charlie took over that part of the nighttime routine.
Grocery shopping was unmanageable. Even running into the store for a few things was often times unbearable.
Nearly 2 years of hobbling and waddling. Waking up in the middle of the night because my body was so stiff I couldn’t move. Waking in the morning feeling so achy and swollen that I couldn’t even go downstairs for coffee for about 40 minutes until my body “warmed up.” As you can see – life has changed a great deal over the past couple years due to the decline of my health.
The crazy thing about all of this was that sometimes I felt good. So sometimes I would be able to manage enough that it wasn’t noticeable. Until these past few months I did fairly well at putting on a smile and rolling with it.
So what the heck is this spondyloarthritis? I finally got some answers after pressing my doctors who finally sent me to a Rheumatologist. After many tests that ruled other things out I got a diagnosis… Spondyloarthritis.
Spondyloarthritis is an auto-immune disease that causes pain and inflammation in your larger joints. It usually affects hips, knees, and back…. Hmmmmmm, yep, I’ve got all 3 of those. I also have joint hyper-mobility – pretty much that crazy way that someone can pull their fingers back towards their wrist or their thumb downwards towards their wrist, or in a standing position put both hands flat on the ground while keeping legs straight and bending only at the waist. Hyper-mobility combined with spondyloarthritis has lead to a real shit-show in my body. Basically my joints sit in a pool of fluid and disintegrate. I have very little to no cartilage left in all of my major joints.
Insert hip trouble… as you could imagine I’ve had bone on bone in my hip for years and just managed the pain as best I could. I’m not one to take medicine, so basically I’ve iced and taken some Advil… not really much help though for such a serious condition. I’d begun getting some really cool packages delivered in a huge box and packed in ice. I learned how to give myself injections of Humira. The medicine made my joint pain and swelling a bit better, but the side effects were awful and I’d stopped taking it about 3 months ago.
Since my hip replacement I am feeling WAY better as far as my hip goes! I feel like I am mobile again and able to get back to being active. And although I am so thankful that I’ve conquered this huge hurdle and really done well with rehab I am still bobbing underwater many days. There is nothing good about Spondyloarthritis. It’s not going away. It’s not ever going to be cured. It’s not ever going to get any better. The progression of arthritis in my other major joints will continue the same way that my hip has and will also begin to affect my lower back. Health stuff that is out of my control is scary to me. It makes me feel vulnerable. It makes me feel nervous, anxious, and defeated.
Many of you reading this may be wondering why I am sharing all of this. It’s simple. For a couple years now I’ve been a Beachbody coach. I have put my health in front of many things because it is necessary. I have posted publicly about my health journey and feel I need to be completely transparent with all of you who are kind enough to follow me, like my posts, and participate in my challenges.
For many months I couldn’t figure out what to do about not being able to work-out. How in the world would anyone trust me or want to get started on their own healthy journey with someone who couldn’t workout themselves? This whole time I tried to stay focused on my nutrition but was really frustrated that I couldn’t work-out like I used to. I was ready to toss in the towel on Beachbody coaching…. I felt like I was letting people down. I felt like no one would understand how some days are good and other days I can barely move. I felt like people wouldn’t understand. I was going to toss in the towel on Fit Kids and on my business.
But I didn’t. I figured it out. I sucked it up and quit feeling sorry for myself. I realized that I am EXACTLY who MANY people do need…. I am real. I have real struggles. I don’t always feel well enough to get through an entire workout. So I started focusing on what I CAN do rather than feeling frustrated with what I CAN’T do. I started connecting with others who had similar issues and similar health barriers.
Once I got past the negative self-talk and self-doubt I started really connecting with people and listening to their stories. I push forward, each day, one foot in front of the other, one step at a time. My hope is that many of you can now connect the dots of my past posting. My hope is that many of you will be inspired to do what you CAN do and at least begin your health journey. It’s not always going to be what you expect. But each day focus on what you CAN do. Be real with yourself. Set realistic goals and celebrate the smallest of victories!
I have sat with this damn post in my head and parts on my computer for months. Many, many months. Many times I wanted to press enter and send this out but didn’t. I was so worried about what others would think. I was worried about whether or not people would judge me or not care. I was concerned that posting this might derail my momentum and turn people away who are needing someone to connect with and coach them to a healthier self… so I post this tonight with a feeling of relief. I post this tonight with a weight lifted because now my story may affect someone out there and inspire them to give this whole “health thing” a try. I am vulnerable and uncomfortable in all of these words but I am pressing enter anyways because I KNOW there is someone out there tonight who “feels” this. I know there is an athlete with injuries, a Mom trying to keep her head above water, or someone with a personal struggle who is sitting there right now questioning whether or not they can do this. Yes, yes, my friend, yes you can. With tears in my eyes and love in my heart I tell you that “YOU CAN!”
My hope is that I continue to motivate others who may have injuries, illnesses, personal struggles that prevent them from taking the first step towards a healthier self. My hope is that you will join me, as I continue to move forward. (yes, I’m about to ask you to join a challenge group… because it’s my job, and I take this very seriously, and I’d be doing YOU a disservice if I didn’t keep asking! There will be a time you are ready, and I need to keep inviting you so that when you are ready I am here waiting.)
I have another challenge group getting ready to kick off soon. My hope is that you are ready, you won’t allow doubt to fill your mind any longer and you won’t continue to use your illness or your personal struggle to prevent you from succeeding in your health. I am here, ready to be thankful for what we CAN do…. And my hope is that you will join me this time around. Message me today to reserve your spot. I am here, and we CAN.