I Just Want to be Normal

I have had skin issues since I was in 3rd grade. I also had, (so the Dr said), eczema around both ankles. I was teased a lot for having “the creeping crud.” I have always been very embarrassed and self conscious of it. As I got older, all of it faded away except one big patch on the front of my left ankle. At 55, I had a severe phlebitis in my left leg that put me in the hospital for a week. I scratched my eczema in my sleep, which literally ripped it out of my skin. Then at 63, another patch appeared on my right leg, just above my knee. My skin started peeling off all over my body, especially where I had scars. It was like a sunburn peeling. It caused pain and a burning sensation

I finally went to a Rheumatologist and a Dermatologist.I was diagnosed with PsA. I had also been diagnosed with Fibromyalgia about 25 years ago and Arthritis about 15 years ago. I was blaming my fibro for my pain and exhaustion. I was told it was the PsA and that I probably had it for several years. I do get depressed because I can’t do the things I used to. I was a Tomboy as a kid & I was extremely active as an adult. My coworkers called me the “white tornado.” lol. My last 2 years working is when my body started to shut down. I started having pain and difficulty walking or sitting for any length of time. I was an Office Coordinator for an Orthopaedic Surgeon’s office. I couldn’t keep up with office hours, so I was put in the phone room. It didn’t take long before that was too painful. I woke up for work one morning and I literally could not get out of bed. I had to take a medical leave, which turned into early retirement due to being handicapped. My life became a living hell. I couldn’t take care of my home or myself. I couldn’t go out with my friends. I felt trapped & alone. I also didn’t get any help from my family. They didn’t believe what I was going through. Finally my kids, (800 miles away), came up & packed up my apartment & moved me to the South with them. I now live with my son & family. Thank God my kids saw the big difference in me & understood. I have been here 4 years now. My life is much easier but I still live in constant pain. Thanks to finding good Doctors here & better medication, I have less pain & a little more mobility. My kids try to get me out more & they make it easy on me to enjoy some activities. I have a cane, a rollater & a powerchair. I use all of them for different activities. I am about to have an ablation on my lower spine & S-I joints to kill the nerves. Hopefully this will allow me to stand & walk pain free. I have severe arthritis throughout my entire spine & multiple herniated discs. Next they will be working on my cervical spine & shoulder pain. I’m praying that these procedures will give me some of my life back. PsA sux!

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Comments

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  • Casey moderator
    1 year ago

    Hi cchappo! First of all, thank you for taking the time to share all of that with us. What an incredible and heart-wrenching journey you have had. Your words are truly so poignant, and you’ve painted such a clear picture of all you have had to endure. While your writing skills are excellent, I am so sorry to read about all you have gone through. Please know we’re here for you, always. Whether you just need an ear to vent to, or a friend to have a long talk with, we’re here. I’m so glad to hear that your family has stepped in and has helped so much, but my heart goes out to you to hear that you had to stop working. It sounds like it may have been something you enjoyed that was taken away too soon. I’m glad to hear you’ve found attentive physicians and medications that provide with you some relief, and overall, it sounds like your move has provided you with a strong network of support and resources. Please keep us posted on your upcoming surgery. We’ll be thinking of you, and wishing you much success. I have so many feelings after reading your story, but I don’t want to write a complete novel (haha!!), so I will just leave you with this: Thank you again for sharing with us. Members like you are what make our community the supportive place it is, and we’re so grateful to have you here! Warmly, Casey (Psoriatic-Arthritis,com Team)

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