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

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Guest at My Own Funeral

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I sobbed as I sat on the edge of my bed reading the comments from family and friends in reaction to my blog post, “Breaking Point.” Dozens of people responded to the pain I felt when I learned last week that I require a second scan to determine if a lump inside my body is the root of my recent leg numbness, fatigue, disrupted sleep, and hair loss.

I didn’t mention my test to anyone other than my fiancé and my friend, Kiada. I couldn’t or should I say didn’t even call my parents because my father was facing a new medical challenge of his own. I thought staying silent would lessen their worry. Yet, as the anxiety welled up inside me, I took to my computer to release my thoughts.

I poured out my mental torment in an essay that, I suspect, caught many people off guard. I didn’t know or believe that many folks would care or they’d be disappointed in me. However, I received posts, emails and calls of inspiration. Instead of viewing my doubts about continuing on as a weakness, I was seen as strong for all that I’ve overcome.

I cherished every word wondering if this is what it’s like to be a guest at your own funeral. I quickly realized it is better actually. I thank God for bringing me back from the brink so I can hear that I’m loved while I’m alive and giving me the chance to say thank you for loving me.

#autoimmunedisease #chronicillness #chronicpain #igg4 #disability #survivor #funeral #prayer #loveconquersall #morethanaconquerer

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

Chronically Ill Person’s Call to Action

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Chronically ill person’s call to action to Americans and President-Elect Trump

Heartbroken isn’t how I felt when I learned who America had selected as its 45th president; the emotion that struck me was fear. As a chronically ill woman the notion that I might lose my access to the quality medical care that has kept me alive and functioning was crushing. Now, let me say, there are many aspects of so-called Obamacare that I am not a fan of and need to be changed like more options and lower premiums. However, there are crucial aspects that must be preserved: no lifetime maximum, no refusal of coverage due to a pre-existing condition, yearly caps on out of pocket costs, and the extension of age that children can be on their parents’ plans. Without these measures one illness can destroy a family. I know. I’ve been on the verge of bankruptcy many times but I’ve battled back, kept working and fighting to continue to be a productive member of society rather than living on the government rolls.

 

So, I say to you today, whether you have an autoimmune disease (igg4 related systemic disease, lupus, MS, Rheumatoid arthritis, sarcoidosis, sickle cell, etc…) or a more common condition like diabetes, heart disease, asthma, etc… make the next President aware of the needs of chronically ill people and all citizens in this country who don’t to watch these selves or their children die because health care is out of their reach. Get Cancer and you may not survive because you don’t have access to the best treatment; the kind the President-Elect has for himself and his family. Hold him accountable for keeping what matters most to you. Don’t allow yourself to become so disillusioned you refuse to stand up for the basic human right to life. You see without proper medical attention, I won’t have a life! Without it I won’t be able to contribute to making America great. I’ll just be another burden on society and no one wants that, especially me. So, stand up! Speak up!

#chronicillnes #chronicpain #autoimmunedisease #donaldtrump #nevergiveup #makeamericagreatagain

Can You Spot The Chronically Ill Woman?

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Can you spot the chronically ill woman? I bet you can’t. Looking at me, smiling with my co-workers, you may not realize it but I have arthritis all over my body; that’s a term people think they understand. All it means really is that inflammation has worn away the joints in my neck, shoulder, and now my knees and hips. It’s robbing me of my flexibility, my stride, my stamina and occasionally my smile. (I don’t let anything steal my joy for long.) I stretch through the pain, walk with the ache, climb and ignore the burn and rest when I can.

I wasn’t shocked to learn arthritis has spread in my body at the doctor this week; I could feel it. Also, I know my autoimmune condition, Igg4 related systemic disease, causes chronic inflammation. I don’t blame the parts of my body for bring worn out; I’d assume anything that’s constantly under attack would feel the effects.

Despite this, my mind tells me it won’t give up; it won’t give in. And, that means I continue to fight for my mobility, my health and therefore my independence.
#nyc #coworkers #NeverGiveUp
#AutoimmuneDisease #ChronicIllness #BackPain

Stop Asking, ‘Why Me?’ Instead Say, ‘Why Not?’

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My brothers and nephew are perfectly healthy; they don’t even usually get a cold and certainly have never had anything serious enough to send them to the hospital other than a broken bone. By contrast, I have done the hospital tour in three states: New York, where I work; New Jersey, where I live and Boston, where I used to go to college.

I have a rare autoimmune disease, igG4 related systemic disease, and it’s cost me nearly all of my vacations from work for the last decade. I use my time off for medical procedures, my recovery time from them, for tests and doctors’ visits. Even if I have leave left, my illness usually sucks up the cash to go away. It’s spent on medications, co-pays, and procedures.

When I was in my 20s I used to wonder, why me? Why was the one who was too sick to go clubbing, out drinking and dancing? I couldn’t because I was either too ill or too drugged to function after nine o’clock at night. And heck, we all know the club doesn’t start hopping until at least 11.

Then, one day my mother shared her thoughts about my perpetual illness. She said if my brothers had been sick this long, they probably would have given up. To her, I was fighter, someone who gets on with things no matter the obstacles. It reminded me of the famous quote: “Ours not to reason why, ours but to do and die,” by Alfred Lord Tennyson.

So, I took a step back and started thinking about what I really want from life and whether I had to miss out on any of it because I was chronically ill. It occurred to me that I let opportunities pass me by because of my own short-sightedness. If I really wanted to go clubbing, I could’ve taken a nap and gotten back up. If I wanted to go out drinking, I could’ve gone out with my friends and sipped on a soda instead of alcohol, at least i would’ve been social. If I wanted to dance, I could’ve gone to clubs and selected a few songs to dance to instead of all of them. It occurred to me that when it came to challenges, I needed to starting think why not me? What’s truly stopping me from enjoying my life?

Instead of looking at my condition as a hindrance, I began figuring out how I could tackle things in my present state. First, I got the best medical care I could so my body is performing at its optimal level. Then, I became determined not to let anything, including my illness, prevent me from reaching my goals; to make the best with what I have rather than what I don’t. Often times I had to be daring, creative and innovative in solving my problems.

When walking became a challenge, I got a cane to assist me. I also exchanged my old car for one that allowed me to raise the seat so I wouldn’t have trouble sitting down or getting out of it; it also has no armrest so my cane is easily accessible to me. More importantly, the vehicle had seats that flip down and out of the way so should I need a wheelchair, it can be loaded into the back through the hatchback. I also obtained a walker to help me stand up and prepare meals with both hands free. And, I put handheld shower heads in all of my showers so it was easier to wash myself.

At work, I modified my desk so that the monitor was higher and didn’t strain my neck while looking at it. I got a massaging lumbar support pillow to help my back, a mug that allows me to drink from any angle, and a pillow to rest my leg on under my desk when it hurts.

Of course, sometimes sheer will doesn’t overcome my physical limitation so I’ve learned to rely on friends and family members who can be my strength when I am weak. I allow them to be my eyes, my ear, my arms and my legs when mine fail me; two people working together in tandem are always better than one.

When my body fails me, I turn to using my mind, which functions perfectly well. I write blogs and books to educate others about self-esteem, health, and medical mistakes. Knowing my words make a difference to even one person usually help me stave off the depression that comes with a long illness.

Now when I ask myself the question, “Why not me?” The answer is there’s no reason I can’t face anything that comes my way by adapting to control the things I can change and letting go of and pray about the things I physically can’t.

The article was originally posted in the Huffington Post: http://www.huffingtonpost.com/nika-c-beamon/stop-asking-why-me-instea_b_8412216.html

An End to Helplessness

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I was moving stiffly, cautiously when I woke up the morning after attending Lisa Colagrossi’s memorial service as I struggled to wrap my brain around the fact that we’d said or goodbyes and life must continue. I grunted and groaned with every step towards my closet to select what I’d where to work, back to Eyewitness News where we both used to work less than a week before. I did not complain but I was at a loss about what to wear.

Does it matter, I thought, as I stated at the hangers in front of me.

I’d been equally baffled the day before as I struggled to decide what to where to Lisa’s memorial service after work. I knew the color had to be black to reflect the darkness I felt in my heart since her passing. I also figured it had to be comfortable because I was inning behind the wheel for an hour and fifteen minute ride to Stamford without my pain medication or muscle relaxers for the first time in years.

I knew trying to function without drugs was going to be hard. In fact, a part of me was okay with the fact that my inside was reflecting the emotional agony within me. However, I was certain I needed to say goodbye and I’d hope communing, in person with others, would release me from the sense of helplessness I’d felt since her death.

I suppose, since I learned of her passing, I wondered if I’d sufficiently told Lisa how much her kindness towards me meant. I longed to have the words to tell her family of her impact to try to ease their pain. I desired to find a way to make sure she was remembered for dedicating her life and sacrificing sleep and with her family, like me and my colleagues, to educate and inform the public about the news of the day.

Feeling helpless is nothing new to me. I’ve spent years with that emotion, ever since doctors told me my misdiagnosed, and therefore, untreated connective tissue disorder may have caused me to develop lymphoma. Two years and five surgeries for lymph node removal, as well as dozen of scans, pills, exams, and doctors’ visits late, I often felt as if there was little I could do about my health. I was, and will always be chronically ill. Yet, hopelessness wasn’t in my vocabulary.  Perhaps I have a strong will.  More importantly, I always had people like Lisa spurring me on to keep fighting. Now one of my daily cheerleaders is gone and I wasn’t able to push her, to save her.

I must admit, when news of her brain aneurysm spread, I pondered why it wasn’t me in the hospital bed. I had the connective tissue disorder that was a risk factor for a rupture; Id had two strokes while Lisa was healthy, vibrant, happy and full of faith during the same time. I heard about her energy at her standing room only masses filled journalists from nearly every New York station, who put aside rivalry to mourn. Every there kneeled, prayed and cried as one, along with boys from Lisa’s son’s team, her parents, siblings and the clergy at her church, who knew her well.

No one knew her better than her husband, Todd, and he rose and brought comfort to us all with his moving eulogy to the woman with whom he spent 15 years. He choked back tears but he was strong, seemingly at peace with his devastating loss. He appeared to take solace in his memories of Lisa, with their life together which included two resilient boys.  He was going to soldier on.  If he was going to do that, how could I not?

I thought about Todd as I dragged myself out of the shower yesterday, one day after his moving tribute.  As I stood there, just then, on Good Morning America, there was news of Angelina Jolie’s decision to remove her ovaries and Fallopian tubes. I aged a tear hearing some of the words from her article about why she made such as radical choice. According the story, Jolie didn’t want her children to every have to say their mom died from ovarian cancer. She refused to be helpless. She took her health into her own hands and made a decision that might give her more time with her children. Angelina got to do what Lisa had not.

Yet, I thought again about Todd’s speech. He mentioned how Lisa’s sons got to say goodbye and make sure their mom had last rites so she would be absolved of her son’s and make it to Heaven, where they believe they’d see her again. They too chose not to be helpless in the only way they could. They couldn’t save their mom’s body but they saved helped her save her soul. I thought, if Lisa’s family can shed their feeling of helplessness and Angelina can do the same, surely it’s not impossible for me to make the best of my circumstance and fight until the life drains from me.

I was feeling empowered as I hobbled to the bus stop, nearly oblivious to the pain; that’s because I understand I am not a slave to my body. I am the master of my soul; that’s all I can control and that’s more than enough.

If you would like to donate to Lisa’s sons:

Checks may be sent to:

 

Lisa Colagrossi Memorial Trust

P.O. Box 13

Frankenmuth, Michigan  48734

#RipLisaColagrossi. #AngelinaJolie  #Journalism #Death #ThankAReporter