The Need To Escape

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I woke up after just six hours of sleep and thought I’m not going to be able to function today. My eyes burned and my head throbbed as I glanced at my phone. Just for one day I wish I could escape this body, I thought.

I swallowed a pill and used my legs, which had a tingling sensation from the knees down, to stumble to the bathroom. As water washed over me, I mumbled my morning prayers. I asked the aching in my joints and the pins and needles in my calf to end. But, it didn’t.

So, I got back to my bed and did Yoga stretching. Finally, I felt okay. Unfortunately that changed as my fiancé and I made the 1 1/2 hour long drive to CT to pick up his son.

We could both barely stand when we got there but the smile on that child’s face upon seeing us made it worth it. We hurried off to Chick-Fil-A for lunch in North Haven. A worker came up and asked about our visit, cracked some jokes, and made us feel as if we were in someone’s home. The banter relaxed me as I took more meds.

When we arrived at our house a few exits away, yard work had to be done. I clipped bushes with a hand held hedge trimmer. The whole time, the rotator cuffs in both arms felt like they would give out. I kept thinking, I wish I could escape this life; everything is so hard for me.

At around 6:45 we decided to head to the mall. We were about to try to escape from Alcatraz.

50 minutes were on the clock when the door to our prison cell was locked. My fiancé, his son and I figured out the first clue easily. Then, my ” stepson” found a box with the second clue. My fiancé solved it and we were on to the third with forty minutes to spare. But, we hit a wall. Nearly 17 minutes and a mini meltdown passed before we got into the box that gave us the code to find the final clue. We were free wth six and a half minutes left.

On the ride to dinner, I thought, I’ve often wanted to escape from paying my bills, my job, my body, and my chaotic life. Today, I learned from an escape room that there are no easy exits. I may always require help, a plan and a drive keep me from giving up. But, with the love of family anything is possible.

#NeedToEscape #ChronicIllness #ChronicPain #Disability #AutoimmuneDisease #CT #NJ #ChickFilA #EscapeRoom

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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Sweet Reminder Of The Power Of Small Gestures

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Today is refill Friday; the day I add candy bags to the bucket on my desk for my co-workers. So, that meant I had to I get out of bed fifteen minutes early despite joint point, nausea and spotty sleep. I slicked my hair back in a ponytail (it’s shedding again due to hormonal issues) and I slid into what used to be tight Capri pants (now loose due to uncontrolled weight loss). Remarkably, the NJ Transit 8:59 train got into Penn Station on time. Then, I got cut off at the stairs from the tracks to the concourse by able bodied people who never see not care about my cane. I shot a dirty look and got in line. I limped up to the first floor then made my way over to the store. I was in and out in five minutes and got a discount.

Suddenly, I came to a dead stop. A little person was clearing a space for his double amputee wife’s wheelchair near the number one train. The crush of people barely stopped so the man began to shout. His frustration struck a chord with me so I gestured for people to stop and they did. The awkward a smiles we got because of our appearance didn’t bother me. I took my candy and went onto work.
An hour later, a co-worker delayed going home to do me a favor. I got a doctor’s appointment easily and I heard from a friend who told me the other day that if he won the lottery he’d use some of the money to help me. I didn’t think the day could get better until o was greeted with this after lunch. It’s Hi in tootsie rolls; a sweet message to remind me that the smallest gesture can add so much joy to a day. #wabc #nyc #randomactsofkindness #disability #chronicillness #chronicpain #autoimmunedisease #igg4 #njtransit #pennstation

Battling Back From The Brink

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Nothing makes you question how you can go on more than the threat of losing a parent. And, last year my father, the towering figure who saved me more times than I can count, was battling for his survival.

Every time I saw my mother’s cell phone number on my phone my hands would shake, my anxiety would rise and my heart would race. I feared she might say he was gone.

Each seizure damaged his brilliant mind and stole some of his memory. He wasted away slowly; losing weight at a frightening pace because he couldn’t eat. We were helpless. The worst part is that doctors initially couldn’t figure out what was wrong. Luckily, I’d learned from my battle to find the correct diagnosis for the autoimmune disease that plagues me, that you never surrender and never stop looking for answers. So, we didn’t.

My father got a stent to remove a blood clot in his heart, fixed an aneurysm, and lives with heart arrhythmia and persistent clots that saps his energy and make it hard for him to walk.

Still, my father has battled back and he’s still here. He keeps moving even if it’s with a cane or a wheelchair. He takes his medication and he keeps following up with doctors. My father keeps striving to add more years to the 50 he’s already spent with his wife, my mother.

I realize no matter how old I get I still want my daddy around. I know some day he will leave but I pray it’s not anytime soon.

Happy Birthday, dad! I love you! #chronicpain #chronicillness #disability #family #happybirthday #father #autoimmunedisease #aneurysm #bloodclot #misdiagnosis #lossofaparent #seizure

Fear of the Unknown

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6:35 pm I walked out of work and realized I couldn’t read the Kiehl’s store sign across the street. It was odd because I have 20/20 vision; one of the few things my autoimmune condition doesn’t usually effect. 

I shook my head, wiped my eyes and put pressure on the veins inside my eye sockets in an effort to clear my vision before I got to the number one train on Manhattan’s Upper West Side.   

For a second, I thought that I might get dizzy and fall onto the tracks. So I took a few steps back from the edge and inhaled deeply a few times. I waited for the train then took it to Penn Station. 

I boarded my NJ Transit train and slumped into a seat. By then, I was weak, shaky and my eyesight was even cloudier. 

I could barely see the gap between the train and the platform when I got off at Newark Penn Station. Every step down the stairs was extremely cautious; every block home looked like a tunnel. When I finally got home, I collapsed on my bed. 

At 5 am, a stabbing pain in the left side of my head woke me from my sleep. I I took pain meds but nothing helped.  So, I tossed and turned in pain until 9 am.

By then, I was up and out, waiting to hear of I was having my third stroke. Sitting there alone, I wondered how I’d get home or care for myself if my condition worsened. 

Thankfully, I didn’t have another TIA. Central nervous system issues caused the muscle contractions and sharp pains in my head, neck and shoulders that were unbearable when combined with my usual knee and lower back pain. 

Now, I’m checking my blood pressure hourly to look for sudden spikes. I’m also taking Fioricet and Tramadol every four hours. But, I have no medicine for the concern that fills my heart because my body is so unpredictable. 

A Love Letter To My M.F.F. (Mother and Friend Forever)

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I’m her first born, her baby girl, her only daughter and I am the sickly one. My twenties and thirties were a disaster. The autoimmune condition that frequently tortures me nearly claimed my life on several occasions. Each time, my mother rushed to my side and nursed me back to health. I felt guilty. I thought I was a burden. But to her, she was simply being a mother to me; a job that would never end. 

Thankfully, over the last year my medical issues have lessened, giving mother and I the ability to just enjoy together. Recently, we chatted as we sat across from each other while eating a lunch after a morning volunteering together. We talked candidly about our relationship woes, difficulty with the children and our medical problems. No topic was off limits. No judgment was passed. We simply exchanged advice, observations and offered support like two girlfriends would do.  

As we walked back towards my car, the lyrics to a song popped into my head:  

“I’ll always love my mama

She’s my favorite girl

You only get one, you only get one, yeah

I’ll always love my mama

She brought me in this world”

I realized the woman beside me taught me how to be a caregiver, to give back, to be a good partner and to pray when all else fails.  She wasn’t just my mother, she was and is my friend. She’s my M. F. F. (Mother and friend forever)

#mothersday #family #love #autoimmunedisease #caregiver #friends 

Why Does Congress Think It’s Okay That I Die?

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I may only have two days left before I am handed a death sentence. House Speaker Paul Ryan and President Trump are pushing a new healthcare bill that would lead to my death or bankruptcy. You see, I have a pre-existing condition. Without the protections from the Affordable Care Act, buying, obtaining or keeping health insurance will, once again, be nearly impossible for me. Why don’t I deserve the opportunity to fight for my life?

I’m not, nor have I ever, looked for others to pay my medical bills. In fact, in the last 14 years I’ve paid $168,000 out of pocket for my care; not to mention the lost wages from my job. Yet, I’ve held down a full-time job, paid my taxes and voted in elections. I’ve been a good American. Why should I, as a taxpayer, have to fight for medical coverage when it is given to the people who represent us in Congress?

I am being asked to choose between keeping myself alive or losing everything I’ve worked hard to maintain because I was born with a condition that has no cure. Why is my life so disposable? How can confessional leaders vote in favor of a plan that endangers their most vulnerable constituents?

I’m not sure whether those who are determined to repeal and replaced so-called Obamcare believe this is the right thing to do for all Americans. I think they’re using this measure to settle a political score. Should human life  be treated like a political pawn or the previous gift that it is? Why Is no one considering my right to life?

I certain don’t believe those who penned the constitution, which guarantees the right to life, liberty and the pursuit of happiness, believed these rights were solely dependent on wealth. Clearly, our confessional leaders do. Without guarantees for pre-existing conditions will only the wealthy will survive medical trials? Is that the America they really want?

#paulryan #obamacare #Kimmel #Trump #PresidentTrump #Congress #ACA #ChronicIllness #AutoImmuneDisease #Igg4 #ChronicPain  #RightToLife #Healthcare