Updated PSA From A Chronically Ill Woman

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I updated my PSA from a chronically ill woman. Facebook reminded me I sent it out last year. It’s even more appropriate today:

A PSA from a chronically ill woman. You can ask what’s wrong with me but introduce yourself first. You can talk to me normally, I’m not hard of hearing or a slow so you can speak normally. You don’t have to do everything for me or advise me not to do things, I’m an adult and can make my own decisions and ask for help. And, you don’t need to wonder why I am working, I need to earn a living plus it’s my body that’s the problem not my mind.

You don’t need to feel sorry for me. I don’t regret having my condition; it’s taught me to be my own medical advocate, to live in the moment, laugh more, go when I can and rest when I can’t, tell those I love how much they mean to me, money isn’t anything without your health, looking good and feeling good are two different things, people are willing to assist if you ask. I can “accept, adapt and achieve.” I’ve also learn an enormous about my true friendship, strength, will, faith, and purpose in life.

So, please stop looking at me with pity or telling me you wish I could be cured. I can’t and that’s okay. I just want to live the best life I can the way I am.

Btw, my life is still pretty amazing.

#nevergiveup #mindoverbody #chronicpain #autoimmunedisease #backpain #disability #chronicillness #igg4 #invisibleillness #spoonies

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Learning to Walk a Second Time Sucks but I Won’t Quit

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It’s sometimes wish i could go back in time before my autoimmune condition ruled my body. Obviously, I can’t. Instead, I must re-learn how to do what used to simple tasks like walking.

I’ve watched my friend’s children, without much warning; decide to test out their legs by pulling themselves up on heavy furniture. They’d use their cubby legs and tiny feet to cautious navigate around rooms all while holding on to something or someone. Then, when their confidence hits its peak, those babies let go and walk on their own. Sure, they fall, and do so regularly, but they get up effortlessly, seemingly with no pain or fear. Oh, how I envy them.

I learned to walk the first time like most children. But, shortly after I turned forty, the steps I took became increasingly more uncertain. I had no way to know that a couple of year later inflammation, vertebrae and nerve damage would make my legs spontaneously go out.

At first, I’d chalk up the brief intervals my legs wouldn’t work on fatigue, overuse from exercise or shrug it off as a fluke. I could because within hours, at most a day, if be able to walk again. However, my fear grew when my legs would spontaneously give our while in use when I was outside. The worst moment were falling in busy intersections in both New York City and Manhattan.

Still, amazingly, I delayed getting treatment until one day I woke up and could see my legs but neither of them would move. When my fiancé tried to lift me, an inexplicable amount of pain shot up and down my spine and tears ran down my face.

I raced to the a bone and joint specialist for help and was told issue in the lumbar and cervical region on my spine, as well as the S1 joint, would best be addressed with spinal fusion. The idea of having someone insert metal into my spine that would permanently restrict my movement immediately evoke thoughts that is become the tin man from the Wizard of Oz. So, I scoured the Internet and decided based on its ranking, the Hospital for Special Surgery was my only hope.

I found a pain management specialist who painstakingly administered injection, along with pain pills. I mistakenly believed they’d get me going right away. In addition to the fevers, the pain and nausea intensified for an average of five days. During that time, my mother or some other loved one would have to drive me around, change my ice packs, help me stand, sit, dress myself and go to the bathroom.

Inevitably, I’d take tentative steps on my own while first leaning on a walker then a cane. Yet, using my legs only seemed to bring back the pain, causing me to hunch over and drag my ailing limb.

It didn’t take long for my doctor and I to realize something else needed to be done up give me back my mobility. The solution: radio frequency ablation; that’s when the nerves in my spine are burned or scarred to lessen the pain. Did I mention this was done under minimal anesthesia while I was awake? I also got more steroid shots in my shoulder and sciatic nerve that were now irritated from learning my weight, awkwardly on the devices helping me to walk.

Getting through the procedures was the easy part. I was not longer fearless like a toddler. Every step caused anxiety to swell with me. I didn’t wonder of my legs would fail again; the questions were when or where. I feared pain electrifying my body if I walked more than a block. I didn’t giggle or bounce back up like a baby when I tripped, slipped or fell. I’d shake and lie back down or stay in my chair at work, sometimes missing lunch, until I could mentally prepare myself to try again.

Nearly a year after my journey to learn to walk again began, I am gaining more confidence and letting go more. I watch my steps now though. I still carry my cane, although I use it sparingly. I stop walking when I get tinges of pain and I sleep with my muscle relaxers and pain pills by my bed. Why? I know the procedures I had are only temporary and my legs will fail again. I will have to learn to walk a third time. I’m confident I will because I won’t quit.

Originally published on the Huffington Post on 3/2/2016:

http://www.huffingtonpost.com/nika-c-beamon/learning-to-walk-a-second-time-sucks-but-i-wont-quit_b_9365884.html