Chronic Illness

Creature Of Habit

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I am a creature of habit. I eat the something every morning at work to take my medication. I buy it from the same coffee cart. I get one of three lunch options. Ad, I refill the candy on my desk on Monday, Wednesday and Friday. When we go out to eat, my fiancé, his son and I tend to go the same places. We notice the servers but I never thought they’d remember us. After all, they serve dozens of people a day. Okay, the fact that we are an interracial couple with a woman using a cane and taking pills for an autoimmune disease might make us stand out. But, nonetheless, they see a sea of faces.
Yet, the other day my fiancé and I went to Bertucci’s in Connecticut for lunch. Our spirits were down and neither of us were feeling particularly well. We ordered but by the time our meals came we couldn’t eat. So, I asked for carry out containers and the check. The waitress returned with the boxes but the bill wasn’t there.
“I’m sorry. We’d like the bill.”
“I got it for you. Your meals are on me. You both always come in here upbeat and seem happy together. Today I can tell something is wrong. I don’t know what it is but it will be okay.”
“No, no, please take the money.”
“No, please let me. I do hope things work out.”
All I could say then was “thank you!”

We left her a $25 tip for making our day.
#randomactsofkindness #bertuccis #ct #waitress #disability #igg4 #autoimmunedisease #chronicillness #interracialcouple

Redefining Family

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I’m not a mother in the traditional sense but I was in the audience to watch a young man I’ve watch grow since he was four years old graduate from elementary school. I felt much like I did eight years ago when my “baby brother” graduated from Drexel University and I did a lot of the same things. I scoured the crowd looking for him and cheered when he received his certificate/diploma.

I sat with family. Yes, family. For the first time since I’ve known my “stepson” his father and I sat beside his mom, stepdad and maternal grandparents. His maternal grandmother gave me a magnet that said inspire. She said my battles with chronic illness are inspiration to her. Then, we walked out to the garden together. His stepfather made sure To push the door so it didn’t strike my cane. And, we talked and even took a group photo. It occurred to me that all is have grown over the years too; allowing our love for that child to let us put our differences aside for a few hours to give him the family he’s always wanted.

The woman I call my sister-in-law did the same thing for my family eight years ago when she let my nephew stand with us when his uncle graduated. I guess I was just paying it forward. Thank God for progress!

 

#family #graduation #blendedfamily #disability #autoimmunedisease #chronicillness #payitforward

How Do I Face My Greatest Fear? Being Childless

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“You’re running out of time,” said my OB/GYN following my latest exam. Does she think I don’t know my own age? I wondered.

“The last time we talked, we discussed that this is the best time for you to get pregnant,” she continued. “So what’s going on?”

It took me a moment to process the gravity of what my doctor was saying. I felt my stomach drop and tears begin to form as I thought about how my greatest dream was slipping away. I’ve always wanted kids. In fact, I can’t imagine my life without any. Yet, time is passing by and I’m not closer to motherhood.

I cleared my head and responded, “I understand. At this point, I may have to proceed on my own.”

“Well, I hope that’s not the case. In the meantime, I think you need to talk to a high risk doctor about your autoimmune condition to see how it would affect you during a pregnancy. Right now, your blood work looks good, you’re at a great weight and your exam was perfect. However, I’ve never had a patient like you. Do you know of anyone else with IGG4-RD that’s had a baby?”

“No and neither has my rheumatologist. All I know is my body overreacts to any virus, incision or changes of any sort. It might not be kind to a fetus. Combined with my PCOS, bringing a child to term won’t be easy.”

“Ever consider a surrogate?”

I want to see and feel my child growing just like other women, I thought. But, I replied, “I don’t know that I could afford that.”

“A lot of people have success with crowdfunding. I think you have a unique story that would resonate.”

“I’ll think about it,” I muttered. But, I thought, I don’t want to beg people to support me. No matter how large my medical bills have gotten over the years, I’ve always tried to pay them myself. I can’t expect strangers to care about my struggles.

I slowly got dressed and contemplated the reality that I may never have children of my own.

I thought, I never imagined surviving all of my medical struggles to end up without a family; with no one to love or care for me as I age. I paid hundreds of thousands of dollars  to survive surgeries, procedures or a lymphoma scare because I thought the best years of my life were yet to come. But, now I have to face the fact that with every passing day I get closer to having to face my greatest fear that I will be childless; that the future I envisioned will not come to fruition.

How am I going to face this? I wondered.  I suppose like every other obstacle in my life: think, plan, pray and never give up. 

 

 

 

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

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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?

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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

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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

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$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