Wednesday, October 1, 2008

Welcome

Hey.

Have you ever fallen into an open sewer hole? One day you're going about your life, packing school lunches and writing grant proposals, thinking about the news and the grocery list, and then... suddenly... you're in free-fall? You can't get a hold on anything to stop your descent, because the walls are clammy and wet (and your hands hurt like hell). You're in the dark, slipping, and calling out for someone to throw you a rope. But strangely, nobody knows what the rope looks like.

Welcome to my last few months.

I'm just like you. Well maybe I'm more liberal and more fond of Swedish Fish than you. But I'm just like you. It started with some pain in my knee 15 years ago. "Bursitis", I was told. "You'll always be able to predict any weather changes - you're lucky!" I was told. Gee. Two years ago I started noticing that those weather changes were happening every morning when I got out of bed, and every time I sat at my desk for too long. I was walking like my grandmother at the age of 39.

So, I did what most of you would have done... I took an Advil and went on with my busy life.

About a year ago I started noticing pain in at the base of my thumb. This pain avalanched into my wrist, my elbow, my shoulder. Soon my ankle wanted in and my good knee decided to party with my bad. And now I'm diagnosed with this disease... Psoriatic Arthritis. It seems that my years of scaly skin have something to do with this pain. I'm just starting this medical journey - and thought I'd take you with me.

Who are you? You're my friend. You're my husband. You're my mom. You're my psychologist who specializes in pain and in so many unexpected things more. You're a random person on the street with some embarrassing scaly skin and an ache in your ankle. You're the fourth doctor who doesn't listen, and you're one of the many who does.

This blog will be a place for me to document what I'm learning about this disease as I struggle through it. I hope it will help me. Maybe it will help others. Welcome.

13 comments:

  1. I am right there with you!

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  2. Hi, I just found your blog. My husband has psoriatic arthritis. We live in Dallas, and the changes in the barometric pressure are so hard on him. It sounds like that's difficult for you, too. I'm glad you finally got a diagnosis. My husband started having back pain in high school. The doctors kept prescribing muscle relaxers. Finally, he got a doctor to x-ray his back and do blood work. Best of luck to you!

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  3. Your not alone, I invite you to follow my blog on my journey as well. www.psafromtheinsideout.blogspot.com

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  4. I am there with you too.... I want to start a blog because I need to understand... I'm from Australia...

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  5. Wow! I am not alone, seems there are plenty of other mothers with psoriatic arthritis. I blog at http://arthriticquaker@wordpress.com

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  6. Well, the world is small, I'm 39 and just 2 weeks past I have been diagnosed with PSA. I need something more than Methotrexate so I'll read the rest of your blog.
    Laid up Ozzie.

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  7. Hi, just found your blog. I'm 38 and was diagnosed with PA in 2004 (after suffering pain for about 3 years). I'm in the UK.

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  8. I like your blog, Jenny! I too have PSA... STUPID DISEASE!!!
    Megan
    maidinak.blogspot.com

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  9. I just stumbled on to your blog and know exactly how PsA feels. I felt so alone when first diagnosed. There wasn't a whole lot of support out there even 5 years ago on the web. Good luck to you and I'll be checking in. Also, I currently take Humira and have voluteered to be a "mentor" for Humira. Web site will be up and running within a week or two. You may want to share your story there or volunteer as a mentor too.
    Best of luck!!
    Lisa

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  10. Hi Jenny,
    My name is Emma and i am 19 years old. I have had psoriatic arthritus since i was ten. Id just like to remind you that you are not alone! I know how lonely it gets feeling like no body else understands, or no body wants to understand for that matter. I know how you feel entirely, in every single aspect of this painful disease. I have never been treated and am finding it difficult to live my day to day life at the moment, just wondering if you know of any treatments that arent too hardcore? Will deffinately be a regular reader of your blog, thankyou!

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  11. Hi, I got my PsA diagnosis about 6 years ago. Initially treated with Enbrel and was doing great, then about 6 months ago horrible pain in my thumbs - just like Jenny - and it progressed so rapidly I couldn't understand what was happening. I didn't even think about the PsA at first since I was doing so well. I am now on MTX and waiting for Simponi to be approved. I was also on Humira, but no help at all. Looking forward to following your journey and learning all that I can.

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  12. I came across your blog last night while reading up on some pain management options. I'm 25 years old and after a few years of suffering from the most horrible pain, I was recently diagnosed with psoriatic arthritis. I just started Methotrexate. I guess because its the cheapest. While waiting to see if it will work, I have to get a hold on this pain. I'm on Lortab and even taking it as often as I can, it does nothing but put me to sleep. I hurt EVERYWHERE. I can't walk. I can't sleep. I'm tired of it. I'm especially tired of saying I can't. My husband is supportive but I'm glad there are people out there like you who are open about their pain and experiences. I know I have a long hard road ahead of me but I just keep hoping for some kind of relief. I guess that and waiting is all I can do right now.

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