I am 37 years old. I live in Birdsboro, PA. I have been married to my high school sweetheart, Chris, since October 12th, 2002. We have 3 kids; Sapphire (13), Desmond (9), and Scarlett (7).
We also have 3 rescue dogs and 2 rescue cats. I was a hairdresser for 19 years before I had to step away in February 2019 due to my Ankylosing Spondylitis. I am now the social media manager and guest experience manager for the salon I worked at when I had to step away from behind the chair.
I have Ankylosing Spondylitis, Uveitis (caused by the AS) and Degenerative Disc Disease. I was misdiagnosed as having Rheumatoid Arthritis for years and then misdiagnosed again for a few years as having Lupus. I finally got my correct diagnosis of Ankylosing Spondylitis in October 2018. My sister, Jenn, and I are identical twins and she, too, has Ankylosing Spondylitis. She was misdiagnosed as having osteoarthritis for years also followed by a misdiagnosis of Lupus for years. She was then correctly diagnosed with Ankylosing Spondylitis in March 2018.
I started noticing symptoms shortly after my son was born in January of 2010, but looking back, I would say I noticed a few symptoms before then. My sister started noticing symptoms when she was pregnant with her oldest in 2008. My symptoms started as fatigue, joint pain, and redness/swelling/pain in my right eye which I now know to be Uveitis. Hers started as low back pain and not being able to stay in one position for very long without pain. Ours both progressed over time with constant low back and hip pain, constant pain in varying parts of the body, mobility problems, stiffness in the low back, neck, and other joints, not being able to stay in one position for very long at all, brain fog, debilitating fatigue, etc…
Once we both were correctly diagnosed, we were put on different treatment plans as we have different Rheumatologists (due to different insurances). I was put on 10mg of Methotrexate once a week which was then increased to 20mg, followed by infusions of a biologic med called Simponi Aria.
My sister started on Humira injections, and Methotrexate was later added to her treatment. Her Rheumatologist switched her from Humira to Enbrel as the Humira didn’t seem to be working. She has since been switched to Remicade infusion and is still on the Methotrexate as well. She has other medical conditions I do not have that has made her course of treatment a bit trickier than mine. So far, we both seem to be doing fairly well with our current treatment plans. The problem, however, with AS is that these treatments do not take the pain away; they are designed to slow the progression of the disease. Biologics CAN sometimes minimize the pain and stiffness but that is not the case for everyone and it really depends on the severity of each person’s AS. Because we were both misdiagnosed for so long, our diseases progressed further.
My sister and I have both had to leave careers we LOVED; hairdressing for me, EMT and nursing for her. We were both in our respective careers for just under 20 years!
We are both limited in how we can interact with our children. While we would love to do the things we see others doing with their kids, like taking them to the park, the zoo, etc…, we can not easily do these things. We can not plan things or make promises to do things because never know if we physically can.
Daily chores are a struggle due to the pain and lack of mobility. Grocery shopping is one of the worst for us both; thank goodness for Wal-Mart grocery pick up!!
There are so many other daily things that have become struggles that you wouldn’t otherwise think about. Our pain is constant. There is never a day that goes by that we aren’t in pain, it’s just that some days aren’t as bad as others.
Methotrexate has also caused us both to have hair loss, but I used to be a wig fitter for The American Cancer Society so I am well versed in wigs!
For me, regular massages, acupuncture, and daily yoga helps. I wouldn’t say these thing help too much with pain, but they help tremendously with mobility and flexibility.
My sister is much more limited in what she can do due to her other medical conditions, but she has found some relief with massage.
It also helps tremendously to have a great support system! Our family is very understanding and supportive and we couldn’t be more thankful for that!
We both still struggle in finding balance in daily life; we both do much more in a day that we should be doing and we know that. That balance is difficult when you have a family and a house to take care of.
We also both struggle every single day with the fact that our careers were taken from us by this disease. We both truly and whole-heartedly loved our careers so we both struggle with finding our “place” and our new normal.
It is incredibly difficult to make peace with and accept that things have changed due to something you have minimal control over.
I like to find one quote or verse each day that helps me through how I am feeling on that given day. Regardless of living with this disease, I am still a very positive person! I give myself permission to cry when I need to, rest when I need to (even though that daily balance is difficult to find), and openly talk about living with AS! This is my life and I am not afraid to talk about it. The quotes I find daily help to remind me of this!!
The serenity prayer helps to remind my sister to try and accept what is, as well as reflect on the things she can change and the things she can not. She struggles more than I do to always remain positive because of the other medical conditions she faces daily. I completely understand that! She is one of the absolute strongest people I know and I wish she could see her strength the way I do!
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