A.S. Face 0047 : Joanna Reed

Today is the first day of infusions. I am married, have a 13-year-old son, and will be 36 in a week…

I am hopeful that my journey leads to quicker diagnosis and relief for someone else out there. My symptoms were vague and non-specific in my early twenties. I occasionally have back, hip, and foot pain, but I attributed it to my active lifestyle and career in retail. I had a pretty easy pregnancy and delivery at 22, and remained pretty healthy. However, when I was about 27, things seemed to change overnight.

My sister, son, and I all contracted Fifth’s Disease (a minor kid virus) at the same time. My son got a rash and healed pretty quickly. My symptoms were painful and severe. I had extreme pain and inflammation that never resolved. After 6 months of doctors and tests, everyone agreed that I had an unknown illness unrelated to the virus. I remember a period of seeing specialists and hoping each time they could give me some remedy or answer – only to leave the office crying. Most of my pain was in my feet and upper back and chest. I had a high sed rate and low RBC. Other than that (and the pain) I was perfectly healthy.

Fast forward several years, and the doctors were convinced I only had foot problems related to my job as a retail manager. I was diagnosed with posterior tibial tendon dysfunction, and had a talo-nav fusion to correct it. This painful surgery was followed by three more years of constant and unresolved foot pain. I finally gave up on cute shoes, walking without pain, or walking without a severe limp. I was angry and frustrated that I had no solution, and I was under 35, but couldn’t run or play or do what I wanted.

More recently, I have been more exhausted than ever, and have faced increasing levels of constant pain.The pain in my chest and back were so bad I feared sneezing. I couldn’t walk distances, and worst of all, I was too tired to do what I love. Even my hobbies like baking and gardening were too demanding. I could hardly gather the strength to get to work each day. At home, I seemed like a zombie. I hit the couch and slept for 10 to 12 hours – only to wake up exhausted.

Over Labor Day weekend this year, I finally developed iritis and scleritis. It turns out this condition was the smoking gun I had been looking for – an answer to the puzzle. After several more tests, doctors finally realized I had been suffering from AS. Who knew?… So that brings me to today. I am starting remacade – and am hoping this treatment changes my quality of life. I look forward to less pain and more energy!

I am cautiously optimistic that I can go back to being the “me” I envision… active, free of pain, doing what I want without wondering how many pain pills I should take with me wherever I go. I am so lucky (like so many others out there) that I have a wonderful husband, son, and family that have supported me through this. I count on their strength when I am weak.

“The best way out is always through”
~Robert Frost

Dublin Ohio United States of America

5 Responses to “A.S. Face 0047 : Joanna Reed”

This sounds like me up and down. The exhaustion and all. I’ve not started remacade yet. All I am on is clinoril and alzulphidine (not sure on spelling) and it does nothing. I battle more with the exhaustion then anything. The pain is bad but when you are to tired to move then it only gets worse. A vicious cycle to say the least

Carl Stone said this on October 28, 2011 at 11:21 pm | Reply
Dear Joanna,
I hope that the remicade is doing well for you. It took a while before I showed improvements, but I stuck with it. I have been on it since 2003 and it has improven the quality of my life.
Best of luck.
Sincerely Cookie

Cookie Has AS said this on November 7, 2011 at 4:28 pm | Reply
hi, that’s a city call. There is any mistakes but the principal is here.

tableau said this on December 5, 2011 at 1:45 pm | Reply
Joanna,

I’m glad you finally got some answers, and I too hope that treatment will work out for you. I love the quote!

Deanna L Williams said this on October 25, 2011 at 5:41 pm

Cookie Has AS said this on January 21, 2012 at 4:20 pm | Reply
Sounds like all my symtoms to the tee. I honestly can handle the pain better than I can the exhaustion.

Carl said this on October 29, 2011 at 1:51 am

Cookie Has AS said this on January 21, 2012 at 4:21 pm | Reply

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