RA Blog week 2019: Day 2: Adjust

FInal-2019-JPGH-badge-marked-RD-not-RAI am proud to be participating in the 5th annual RA blog week.  Day two’s topic:

Adjust – How do you adjust to the affects of RD on your career, dreams, goals?

I started with symptoms of RA at the age of 14.  I was told I had tendonitis.  At 19, the pain and swelling was so bad that my orthopedic doctor recommended surgery.  They got in there and the tear they were sure they were going to find, was non-existent.  I had issues for years with swollen knees, limping, and crutches.  Every time it happened and I sought out the help of a doctor, and I was made to feel like I was a hypochondriac.  At age 22, my doctor called my house and left a message with my mother.  I had been running fevers and unable to use my arms and hands.  The message my mother gave me, “The doctor says you are as healthy as a horse!”  Uh, what??  I know the message was lost in translation.  My mom was relieved I was not “sick”.  I was afraid I was going crazy.  I got no answers.  After that flare up, I adjusted how I managed it.  I stopped going to a doctor when my knees flared.  I dealt with it, until I could no longer deal with it.

At age 30, I started back to graduate school for my second masters degree.  I was working full-time and even held a part-time job, while simultaneously going to graduate school three nights a week.  When I started feeling the pain in my arms and hands this time, I didn’t go to the doctor.  It wasn’t until I was barely able to walk that I gave in and sought help.  It was almost 9 months before I got any answers.  I met a few rheumatologists along the way that also made me feel a hypochondriac.  One told me, “It took a long time for your to “make yourself this sick”.  So it will take you a long time to get better.”  Yep.  That is what she said to me.  The pain was that overwhelming. Then to be told it was all my fault?? That was the day I thought about ending it all.  Thankfully a friend reached out to me that night and I woke me up to the fact that I needed help.

Adjust

Not only did I have to adjust to my new body, but I had to adjust what I expected from my doctors.  I would not allow someone to blame me for my illness.  Was I working crazy hours?  Yes.  But a lot of people worked crazy hours and never had joint pain.  I knew there had to be something wrong with me.  I couldn’t fake swollen and red joints.  I wasn’t a hypochondriac.  Once I found a doctor who actually heard me and began treating my symptoms, I was able to get my life back.  I went from a woman who had both wrists wrapped in braces, ankles wrapped, knees braced to be able hobble down school hallways….to a woman who could walk without those aides (most of the time).

I had planned to pursue my doctorate degree, but with my disease, I had to adjust my priorities.  I loved working with young children, but their contagiousness during cold/flu season caused me to adjust again. I now work with older kids and adults.  Work is still difficult for me.  My body does best when I work shorter hours, but at this point, I have no choice.   My goal is to retire early at age 56 then work part-time.  This was never my goal before RA.  I had always planned to work full-time until age 65, but I know in my heart, I just can’t make it that long.  So again, I need to adjust my plans.

I always say that living with autoimmune arthritis isn’t the life that I wanted.  Don’t get me wrong, I have a good life, but I did have to make a lot of adjustments over the years that were not easy for me.  Years of therapy helped me learn to not focus on what the disease has taken from me, but helps me see all it has brought into my life.  It is sometimes hard to see the good, but I know it is there and it gets me through the tough days.

RDblog week Border png- RD.png

Posted by

Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

4 thoughts on “RA Blog week 2019: Day 2: Adjust

    1. … and I hit “comment” before I was ready …

      I’ve had to do a lot of adjusting since I became chronically ill. It’s sooo hard, but ultimately, I’m happier because I did.

      Like

  1. This darn (OK maybe darn is a little light) disease causes so many reroutes. I have read most everyone’s blog today and I am amazed that we the to say the same things; RA caused me to detour and that detour was frustrating and it has led ot new things. It is a common theme in our community. 🙂

    Hey I like the graphics!!!

    Liked by 1 person

Leave a Reply to asmyjointsturn Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s