Tuesday, October 11, 2016

Opening Up About My Journey with Arthritis

This post has been a long time coming, and something I have wanted to share with you since the inception of the blog. Truth be told, I've been a bit afraid, not only because it is something very personal and a daily struggle, but also because I hate the thought of looking weak, or being too vulnerable. My close inner-circle knows very well the trials and tribulations I have been through the past few years, but it isn't something I share often until recently...because I think it is important to be honest with myself and with my loyal readers and followers.

Since moving to Houston, I have been very involved with the Arthritis Foundation. My involvement began in San Francisco before I was diagnosed, and it has become an organization that I have come to heavily rely on -from doctor referrals, to support, events, and last but not least, friendship - I know I can always count on the AF.

One of my major pushes to open up about my journey and struggle, is because during the summer, I had the privilege of being named the adult honoree at the Arthritis Foundation's Bone Bash this year. The Bone Bash is the annual Halloween themed gala that is happening later this month, on October 28th (read more about the Bone Bash, and get tickets here if you're interested)! I want to use this as an opportunity to educate others about arthritis, and to let people know that arthritis effects people of all ages, races, genders, etc. It is the number one cause of disability in the US, not to mention the #1 reason of honorable discharge from the armed forces - wow! The pictures from this post were actually taken on the same day that my honoree video was shot for the Bone Bash - you can clearly see there was a lot of laughs, but a lot of emotion too.

When I was a child growing up in Colorado, I was diagnosed with Juvenile Arthritis at the age of nine. The disease primarily affected my hands, but all of my joints fell victim to the harsh pain. I had to learn to write with both hands, as my flare-ups would mainly occur in my right hand. I also had to switch from skiing to snowboarding, as I was unable to hold ski poles. I had to adapt to a life that meant taking pills multiple times a day, and having to sit out and watch while the other kids played. At the age of twelve, after several years of fighting the chronic disease, my flare ups lessened, and the pain ceased to exist – I was in remission.

In 2013, at the age of 26, I woke up one morning with unbearable pain in my lower back and hips. I chalked it up to stress, and my grandfather's recent passing, but when I started having trouble sitting, standing, and was unable to dress myself or leave the house, I knew something was really wrong. After a few weeks, and consulting one of the best rheumatologist in San Francisco (where I lived at the time), I was diagnosed with a type of arthritis called ankylosing spondylistis (AS). Having suffered from JA as a kid, I  was surprised to learn that arthritis never really leaves your body - even if you’re in remission, it lies dormant in your body.

On good days, the pain is always there. Always. It is definitely something that never goes away, but it is manageable. I am able to keep it as under as much control as possible but using Humira, a biologic that I inject in the upper thigh every other week. I'd say, on average my pain is always at a four, or five (out of ten). On a bad day, I am bed ridden and the pain is unbearable. My body aches a thousand times worse then the aches you get when you have the flu, and it is nearly impossible to take care of myself. On those days, there isn't much I can do, unfortunately, and I still am trying to learn not blame myself and hating my body when it happens. As a total type A control freak, knowing something is out of your control is challenging enough, but when that something is your body, it is frustrating and extremely angering.

One of the biggest challenges of suffering from arthritis is that it is an invisible disease - people don’t get it because they can’t see it. I've heard so many times, "But you're young," "You look fine," "Are you sure," and "Arthritis is an old person's disease." To this day, I am surprised with some of the things that come out of people's mouths and the misconception of the disease.

Even though the pain can be severe, it’s not going to control my life or change who I am. Since being diagnosed, I’ve needed to create a new normal. I no longer am capable of the go-go-go pace that I was once accustomed to. Now, I have to slow down, limit myself to how many things I can do in a day because I get tired really easily – that’s been a big life change. After running a few errands, doing work, going to meetings, or an event, I am get exhausted. When 2-3 o'clock rolls around, I have a hard time getting a lot of things done, which at 29, is a challenge.

My passion for my job also keeps me going. A career is fashion had been a lifelong dream of mine, and I’ve been truly blessed to do what I love. My arthritis does pose challenges, and makes being the owner of my own company and working on the blog difficult sometimes, as I want to give 110% to everything. I need to be able to be flexible with my clients, their schedules, and being available on a whim, and sometimes I just have to put on a brave face and take on the day. I truly do believe laughter is the best medicine (can you not tell by some of these photos?!).

I am lucky to be have such a tight circle of friends and family who support and help me with my struggle. They are more understanding and kind then I could ever have imagined or prayed for. Adam carries the brunt of the weight of this disease, as he's the one with me 24/7, and I couldn't be more grateful to have a more understanding, caring, selfless, and kind fiance. He's always a phone call away and someone I have been lucky enough to go through this with and rely on.

With National Arthritis Day tomorrow, I am hopeful that in hearing my story, I have lent a voice to those out there with arthritis, that I have opened up the door for an open discussion on the disease, and that perhaps it leaves you with a better understanding of this disease so you can relate and lend an ear to a friend or loved one that may be suffering, as well. I may have arthritis, but arthritis doesn't define me.

A big thank you to Lauren of Lauren Beatty Photography for taking these photos, to Ludgier and Preston from RAV Technologies for filming my honoree video, and to the wonderful Jen Torres from the Arthritis Foundation for interviewing me, making me laugh, and for being an amazing friend. 

1 comment:

  1. Incredible post, Ashley! You're so brave and this will serve as such an inspiration to so many. xo Julie



design + development by kiki and co. creative