A.S. Face 1128: Patricia Jordan

Face 1128

My name is Patricia Jordan. I live in Williamstown, NJ. I am 35 years old. I was diagnosed with Anlylosing Spondylitis in October of 2008 after many years of no answers (problems starting around 19 years of age including my first bout of Uveitis & swollen lips, etc). My new rheumatologist also added a Fibromyalgia diagnosis in 2013. I didn’t believe him but was astonished when he gave me Tramadol for the heaviness & shoulder/neck pain & found relief in that area.

I work full time as office manager & a licensed sales producer of an Allstate office, though is is only by God’s grace I have this position & have had the strength to maintain it. I have 3 children (Boy 7) (Boy 6) & (Girl 4). I am married (tho barely thanks to ignorance & non-understanding of an almost invisible disease -this is just as much my fault as it is my spouses as I have built a wall of defense that he cannot break through any longer).

I grew up in Illinois. I’ve only been in NJ since 2006. As I stated previously, I started having strange occurrences when I was 19. Half of one side of my lip would swell, then a wrist, then a knuckle. Each instance would usually last a few days & disappear. My family doctor called it a number of things: stress, depression, anxiety, cramps, allergic reactions, etc. No one thought it was a big deal so I just kinda dealt with it. My first bout of Uveitis got me comdemned as a pink eyed freak even though the meds wouldn’t work. A steroid pack did work but they still swore it was pink eye. I switched to a different family doctor & received the same kind of runaround. None of my concerns were really taken into account until I had my third bout of Uveitis but this time in my other eye & their “pink eye” meds swelled my eye completely shut. I was finally referred an eye specialist & come to find out it was Uveitis the whole time & I had already had some significant vision damage & even had to get glasses. At the time, the specialist knew something was wrong because it’s not typical to get occuring Uveitis, especially in both eyes. But the only thing they knew that could cause it was an underlying condition or bursitis or herpes? Yes, that’s what I was told & since I was negative for both tests, I walked away still not knowing.

I continued to have problems throughout my 20’s & had terrible back pain when I woke up in the morning. I just took it as I needed a new bed (I was renting my sister’s upstairs & sleeping on a couch so it kinda made sense at the time). I met George (my hubby) online in 2005. Our first date was his sister’s wedding 9/30/2005 after e-mailing & talking on the phone for hours daily. I flew into the Philadelphia Airport & once we met the rest was history. I was in cloud 9. We had a long distance relationship & would see each other 1 or 2 times a month. Then on 1/30/06, he proposed to me after a testimony he gave at a Retreat in New York. I moved to NJ 3/5/06 & we started planning our wedding, which was set for 7/7/06.

Shortly after my move to NJ, I was asked to come work for a man from our chuch who was an insurance agent who was opening a local agency. I said no a few times, but finally he gave me an offer I couldn’t refuse. I went through the schooling, got my insurance license & started at the office 6/5/06. About a week after starting at the agency, we found out I was pregnant! So we married with our first son in the oven. =)

As for me physically, I hadn’t had a lot of problems that year except for a bout of Uveitis right before I moved to NJ (which we all acclaimed to being stress due to the huge changes happening). Even through my first pregnancy, I didn’t have a lot of problems except for back pain, but that was normal. All of that changed right after I had our first son 12/16/06. Within 2 weeks of giving birth, my body went crazy! Flares were bouncing from my eyes, my shoulders, my knees, my wrists, my lungs, & also my bowels! I had no idea what was happening to me, but again we had something to blame it all on. I had just had a baby & hormones were changing. Some steroids got me back in check.

I got pregnant pretty quickly with our second son. He was born 12/30/07. The pregnancy went as good as the first, but then right after, the same craziness happened! My body went berserk! This time, it didn’t go away totally. I was also emotionally drained, exhausted all the time, & quite moody (I was a crazy lady for real!). My hub sat me down nicely one day (which is what probably shocked me the most) & explained that something was terribly wrong & I wasn’t the same person. I had to admit that I would “wake up” after staring off into space for who knows how long with the baby chugging on an empty bottle. I was definitely not in control of myself or my circumstances so I saw my obgyn & got on Lexapro for postpartum depression. With a few months, I came alive again & had control over my brain & could work through feelings that had previously controlled me. This is also around the same time that my phycial problems were waning on me. In Septemner of 2008, another bad bout of Uveitis (that steroids couldn’t fix) got me sent to seea new eye specialist. For the first time ever, this specialist brought up the idea of seeing a rheumatologist. A roomawhat?!

So, I went to see a rheumatologist. I came prepared with a history of weirdness & tons of bloodwork. He went through my stuff, asked me a few questions, & said he was going to have me do bloodwork for something that he didn’t see in my bloodwork history, but my case fit the bill. I said ok, went & got the bloodwork & followed up with him. BAM! HBLA-27 was positive & with all the other history, it was a positive diagnoses of Ankylosing Spondylitis. Rheumy said it wasn’t suprising I was never tested for it because I had never seen a rheumotologist before, it was a rare disease & predominately a male disease at that point. It was bittersweet really. I investigated & researched like a mad woman. It all made sense now. It was my introduction into the invisible disease, a ghost that would shadow me for the rest of my life. I had to look at the bright side through… at least I finally knew what I was battling against all these years…. myself.

To be continued.

New Jersey, United States of America

2 Responses to “A.S. Face 1128: Patricia Jordan”

  1. Dear Patricia,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Patricia, Thank you for sharing your story. You sound like you have a wonderful outlook and beautiful children. 2/3 of people with SpA don’t get uveitis and therefor so many people never get a referral to a ‘roomawhat’ or the right dx, especially women. Looking forward to reading the continued story 🙂

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