Can I Take Anymore?

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Last night, I couldn’t wipe away my tears fast enough. When my hand was free, I clasped it in front of me, looked up at the sky and cried out, “Lord, I’ve taken all I can. I’ve endured assaults, procedures/surgeries, endless pain, staggering medical bills, infidelity, damage to a limb, rejection as a writer, the loss of loved ones and stress and poor treatment at work but I’m tired and I need a break. This new pain is just too much, the sadness it brings is too great.”

The warm tears flowed again as I waited for an answer or a sign about what to do. Then, a single thought entered my mind, “you’ve prayed now think and wait.” I laid there for about an hour until I was calm. With my mind finally quiet I thought, “It will be okay. Maybe not tomorrow but it will be. Hold on.” It wasn’t the answer that I was looking for but it was enough to allow me to sleep. And, I did and woke up to face another day.

I sat stoically at my desk, doing my best to hid my sorrow. Several people asked but I said little. By the afternoon, I was trying to find joy in little things when my co-worker Diana came up and she hugged me. She didn’t know that unsolicited gesture of love made me feel connected to something other than my pain for a few precious moments.

#autoimmunedisease #spoonies #chronicpain #chronicillness #invisibleillness #igg4 #depression #disability #powerofprayer

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Coming Down From The High

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The adrenaline rush I got as I stepped off the makeshift stage at Pier 95 after addressing the crowd of autoimmune disease sufferers made me forget about the cold coursing through my body. But, by the next day it had faded and life was back to normal. I was coughing, blowing my nose and hoarse. I was also without direction. That speech, that moment was the highlight of years of sharing my story of fighting to identify my autoimmune disease (igg4-rd) and live with the side effects of it.

I was planning on what to do next to reach others suffering from a chronic illness and chronic pain like me when my rheumatologist emailed me. She says tests confirmed her suspicions. I appear to be in remission.

“You do not seem to have any symptoms of IgG4 syndrome- just an elevated IgG4. Please let me know if any symptoms arise and I should see you in 4 months.”

4 months? That’s the longest gap since I’ve seen her in nearly seven years, I thought. I’ve spent the better part of my adult life waiting for the next medical crisis. I’m not sure I know who I am without one. I don’t know what my mission is if not to share my musings on my medical trials.

As the next two days passed, an overwhelming sadness hung over. I felt lost. The thought that my decades of agony may not have had a purpose at all made me cry myself to sleep.

For years all I wanted was to be symptom free, I thought. I wanted to enjoy my twenties, to have children, to have traveled the world rather than visiting hospitals and spending all of my money on drugs and procedures. Now that my body has left me in debt and damaged my condition wanes. Really?

I’ve cried and I’ve prayed both about my relief and disillusionment. I’ve been stumped by little decisions like wearing my hair curly or straight. The only thing that’s calmed my mind is the notion that I should be calm and be still and wait for a sign about my future.

#invisibleillness #chronicpain #chronicillness #autoimmunedisease #igg4 #disability #autoimmunewalk #tvnews #nyc #aarda #depression
#rheumatologist

Food For My Soul

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My hips burned, the veins in my head throbbed, and my knees cracked as I rose from my bed on Friday morning. When I placed my foot in the floor, I realized sleeping didn’t relieve the ache in between my toes or the balls of my feet either. But, none of this matter, it was time to get ready for work. I thought, I need to get through work to meet my friends to goto our first dinner club event; a monthly home cooked meal at each other’s homes.

I powered through a frustrating nine hours at work that was peppered with a WGAE union meeting, three and a half hours of shows despite computer problems, and learning new software. When 6:40 rolled around, my friends and I hopped into my Fiat and battled rush hour Lincoln Tunnel traffic to Union City, New Jersey.

My friend Sixto opened the door to his apartment and we were greeted by his cat. He warned Cara and Alicia that the cat could turn on a dime and go from sweet to vicious. But, they followed her into the spare bedroom used as an office anyway. I was sitting near Sixto while he cooked when we heard a commotion. Apparently, the cat attacked them and Alicia was shut in the room with the terror. Luckily, she escaped unharmed.

Sixto’s girlfriend Stephanie came home followed closely by another friend, Mike. Our gathering was compete. As wine flowed, a delicious meal with placed before us. We ate, told stories of our youth and did impersonations. We also talked about the plans for our future and exchanged advice on saving money, finding a home and finding love. We just enjoyed each other’s company.

When the meal was over and Mike went home, the rest of us walked up to the rooftop deck and pool that overlooked Manhattan; the city that brought someone from the Dominican Republic, Spain, a Jewish girl from Virginia and a native of New Jersey and New York together.

I could see Weehawken, where I first moved when I came back from Boston. Sixto pointed out his first solo apartment in West New York. We could see our past and our present at the very same time.
The moment struck me. I wondered what happened to that hopeful girl who started her life over despite obstacles. I wondered whether the woman I’d became would take the same risks. I questioned if I’d had surrendered to life rather than embracing it because I let my chronic illness cripple me. These thought raced into my mind because it had been months since I spent a Friday night out; when I didn’t go straight home from work to eat alone in front of the television.

I realized that the gathering with my friends was more than a meal. It was like food to my soul; it rejuvenated me in a way I didn’t know I even needed. It made me feel connected to other people; it made me want to explore and live again.

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Rising from the Depth of Despair

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Quite frequently, I’m asked how I always manage to have a smile on my face despite all my medical problems. The truth is I don’t but oh how I wish that were true.

I hide the pain, discomfort, fear and anxiety I have about living with an autoimmune disease until I am alone in my home. I console myself because, deep down, I know no one can change the fact that there is no cure for what I have and I will be ill over and over again.

When I sink into the depths of despair I see nothing but a past filled with agony, dread, and wasted promise. The depression about my helplessness somehow gives me amnesia about all my accomplishments, all the joy in my world.

I wail in my room trying to expel my anger and rage for being trapped in a frail body. I sit up, alone in the darkness, night after night waiting for morning. I toss and turn, haunted by choices or lack of them, like how far can I move away from a hospital? What can I wear that will hide my ice packs or my surgical scars? When no real answers come, I drop to my knees and pray. I don’t ask to be healed but for the power to endure.

In the throes of my struggle to release myself from my repetitive hell, I try to convince myself there are brighter days ahead. I repeat mantras to myself: “don’t give up,” “You have a strong mind and that’s greater than a weak body,” “You are greater than your condition,” “You are tough and independent so you never give in;” and “You have too much left to do to let this beat you.” Eventually, I get sick of my own self-pity and my thoughts shift to finding a way how I can thrive even when my body does not. Only then am I able to clear my mind and I sleep; that is my seed of hope for the next day.

I covet that seed and I pray every night before I sleep that it will grow. And, it does slowly, allowing each day to be easier than the one before. I go from sitting on the toilet to style my chair and brush my teeth to standing while I do it all.

Finally, when I can walk with my chin up, tears dried, regrets buried, pain muffled, fear repressed, and body stitched together as best as I and my doctors can; I resume my “I’m just like everyone else” routine. I begin again, knowing that any time; I could be in the depths of despair again but I can and will rise above it, slowly