Fear of the Unknown

Standard

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. 

Will Relying On Faith Be The Only Way The Sick Survive Under the AHCA?

Standard

 

I bowed my head and prayed yesterday as I watched the votes roll in for the American Health Care Act. I wondered, how can elected leaders vote on a plan without knowing its impact, it’s total cost, or its benefits? How could they, in good conscience, believe that agreeing to something blindly is the right way to protect any American?

By the time my prayer was over, the tally was in and the measure passed in the House. I watched as President Trump heralded Republicans for a bill that will allow states to get a waiver to let insurers  off the hook for covering people with pre-existing conditions.  I wondered, how the same man who denounced discrimination just hours before could applaud a bill that is biased towards the chronically ill?

Before the vote, President Trump signed the Religious Freedom Bill. He said his administration wouldn’t allow people of faith to be targeted, bullied, silenced or discriminated against again. Was his outrage over oppression genuine? Or, is it reserved for people who shared the same income, values or political views?

Of course, the executive order the President signed relaxes the tax rules for religious organizations and the rules regarding punishing them for participating in political campaigns. Conservatives hope this will mean more money in their pockets and speaking opportunities. Meantime, the AHCA  they support will take more money from the working poor, elderly and chronically ill Americans. Aren’t the people affected by the ACHA the same ones religious leaders should be striving to protect and help?

The ACHA will also defund Planned Parenthood, removing medical care options. Conservatives see this as a victory for family values and the right to life movement. But, who will care for sick children born to parents without healthcare? What kind of quality of life will they have without proper medical attention?

I can only assume the President has decided the sick will survive on faith if the AHCA passes in the Senate. Or, perhaps his administration is sending message that discrimination against the sick is okay if it’s good for his political clout.

#ACA #obamcare #healthcare #ACHA #trump #PresidentTrump #sick #discrimination #ChronicIllness #Autoimmunedisease #PlannedParenthood #ReligiousFreedom #ChronicPain #igg4

Why is Discrimination Against the Sick Allowed in the US?

Standard

Why is my life not worth more than a vote to this administration? That’s the question I asked myself when I woke up to the news that an amendment has been added to the bill to repeal and replace the Affordable Care Act. The change doesn’t ensure people, like me, with pre-existing conditions will be able to keep or get health coverage.

The Amendment crafted by a Republican Congressman from my home state of New Jersey allows states to seek individual waivers. One could end continuous coverage and give insurance companies a year to write policies that consider a person’s medical status. Does anyone really think this won’t raise the cost of plans?

The amendment also doesn’t address what sick people are supposed to do while they wait for coverage. What happens to their bodies during that time?

American medical experts says sick people will get second class care if any at all. Why is it acceptable for chronically ill people to be forced to become second class citizens in their own country?

Earlier this week, more than 200 members of congress came together to reintroduce the Equality Act. It’s designed to protect LGBTQ rights; to stop discrimination against members of that community.  Where’s the bill for the chronically ill?

When the Equality Act was proposed again, I heard passionate speeches about attacks by the Trump administration on the rights and values of Americans. Congressional leaders said action had to be taken to protect vulnerable citizens. Aren’t the sick, the weak and people suffering from mental or physical ailments in need of the most assistance and protection in this society?

Republicans are thrilled the new healthcare bill may pass in the house today. But I wonder, will their glee over a political victory be consolation to my parents and the loved ones of other sick people as they waste away from illnesses they can no longer get treated?

 

 

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

A Gift from Beyond the Grave

Standard

I almost never exclaim with glee in the newsroom. All too often I’m in the verge of tears because I’m covering one tragedy after another. But, this morning I was overcome with happiness. On my desk was a box containing candy from my late co-worker Mary Lilly’s husband, Jim. 

I hadn’t spoken to him she passed suddenly in December. The truth is I’m still in shock over the loss. I miss her stories, her kind words, her constant inquiries about my health and willingness to help, and her boisterous laugh. I miss my friend. 

Seeing that candy made the smile for the first time in months. Memories  of Mary providing lollipops and mints to the right side of the newsroom in edit room four came flooding back. I would supply the left side of the room.

I gladly shared that candy with my co-workers in her honor. I told everyone who gave us the unexpected treat. It was a sweet reminder of the little things Mary did to make every aspect of my life better.

#rip #marylilly #coworkers #randomactofkindness #tvnews #journalism #chronicillness #autoimmunedisease  #nyc 

Cost of Survival

Standard

$163,270.90 that’s what I’ve paid towards the cost for doctors to keep me alive and as well as I could be the last 15 years according to a note from Cigna.

Before that I had another health plan so who knows what grand total for my care really is, I thought.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before the Affordable Health Care Act capped the amount, I thought. I wonder how much more I will pay when Obamacare is repealed. I wonder if my level of care will change. And, I wonder if I’ll be forced to stop dragging myself to work which allows me to be a tax paying member of society. Right now, I work hard despite my pain and have very little to show for it. I get to enjoy very little in this world.

My lip quivered as I stared at the update from Cigna following my latest trip to the doctor.

You know what else I could’ve done with that kind of money or the average $9000 I used to pay out-of -pocket each year before

I crawled up the stairs on my hands and knees to my bedroom as my broken toes throbbed.

I better not fall again, I thought. I might have to sell my house to pay the bill.

I flopped down on my bed clutching the paper that had dampened my mood. I shook my head trying to understand why it costs so much just to survive. Then, I glanced over at the nightstand and spotted a photo of my fiancé and “stepson” with their arms around me.

If I didn’t lay out that money, I wouldn’t be here, I thought. I wouldn’t know the love I have in my life. I wouldn’t have written books to leave a legacy behind. And, I wouldn’t have been able to show anyone that no matter what “cross” you have to bear in life, life is worth living at any cost. #igg4 #chronicillness #chronicpain #backpain #autoimmunedisease #nevergiveup #cigna #obamacare

Wash Away The Pain

Standard

I turned on the shower early this am so the water could drown out my tears. The hot water flowing across my shoulders relaxed me, if only for a few moments. I wanted to scream, shake my fists to the heavens or falls to my knees. But, I couldn’t decide which one to do so I cried. No matter what I did, I couldn’t ease my pain.

I kept thinking about the harsh words from someone I love that wounded my souI so deeply I’m not sure it will ever heal. I could see my father’s face in the hospital as he tries to be brave amid heart trouble. I could see my mother acting as the rock while I know she must be racked with fear like me. I glanced down at my broken toes and bruised arms from the crutches I’m using to get around and thought about the money yet another illness will cost me. I stared at my body riddled with scars from more than 25 procedures because my autoimmune condition and thought, how much more can I take?

I stood under the shower head until my face was only wet by the water coming out from it. Then, I silently prayed for God’s guidance. By the time I stepped out, I had no answers but I was a bit more calm because I’d gotten my pain and fear out and I felt a bit less lonely. All I could do is dry off and begin again. #autoimmunedisease #chronicillness #faith🙏 #backpain #nevergiveup #family #igg4

Putting My Feet Up

Standard

I was hurt and afraid when my supervisor/friend called this morning to tell me not to brave the storm in my crutches to get to work. I appreciated the concern but I was afraid it was the first indication that the autoimmune condition which led to the fall that broke my toes was start to make me disposable at work or making it appear I couldn’t keep up. I was hurt because I wondered if this was the first of many injuries that would allow my illness to halt my plans and dreams. But, by one pm I gathered my crutches, my fiancé grabbed my bag and he cautiously guided me to work. I contributed to the snow coverage on air and I felt renewed. The truth is I’m too damn stubborn to let anything stop me. #chronicillness #autoimmunedisease #backpain #nyc #tvnews