Humans of New York Post Sums Up Everything We Love About Nurses

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This week, Humans of New York creator Brandon Stanton left the streets of New York City for a different setting — the Pediatrics Department of Memorial Sloan Kettering Cancer Center. He’s been sharing the stories of patients and their families, but one post in particular summed up everything we love about nurses.

“The MDs build the treatment plan. The nurse’s job is to get it done,” says the nurse photographed by Stanton. “We’re the ones who are always there, making sure every single moment of every single day is the best it can possibly be.”

The post in its entirety reads:

“The MDs build the treatment plan. The nurse’s job is to get it done. We’re the ones who are always there, making sure every single moment of every single day is the best it can possibly be. What’s going to take away that nausea? What’s going to take away that pain? How can we convince the doctor to let this kid see some sunshine? We know when the kid has a play at school. We know which massage therapist they love and which member of the family is most likely to persuade them to take their medicine. These kids rely on certain nurses like they’re gold. A lot of time these kids won’t listen to the doctor. But they’ll listen to their nurse.”

Just another reminder why nurses rock.

Check out the Humans of New York Facebook page to see more from Stanton’s series in the cancer center.

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When We Overlook the Caregiver Who Needs Care, Too

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Throughout my father’s journey with cancer and its aftermath, we would often tell my mother, “You need to take care of yourself! Go get your hair done! Better yet, get your nails done!” And then we would all return to our daily lives.

Oh, the irony in telling the caregiver to take care of themselves.

After my family’s journey with cancer I can understand why sometimes caregivers die first, and after reading my story I bet you will understand why as well.

The last three years of my father’s life were a horrific journey. He went from a completely self-sufficient man to a patient who was bedridden and unable to perform basic tasks such as using the bathroom or bathing. My father fought with every ounce of his being to survive and my mother was right by his side every step of the way. My mother became an extension of my father’s heartbeat.

My mother, who was my father’s caregiver experienced extreme exhaustion and frustration. Many times I would watch my mother care for my father in complete admiration. Where did she find the strength and courage? 

I watched my mother selflessly care for my father. My mother cried daily and worried nonstop. After my father fell one night using the bathroom, my mother spent endless sleepless nights fearful that my very weak father would fall again and this time break a hip. Her days would be spent caring for my very sick, frail father. Although he had hospice care the last four months of his life, that was only for a few hours during the week.

Despite everything I have said, if you tell her she’s the reason my father lived as long as he did, she will look at you with tears in her eyes and tell you her love couldn’t save him. She will tell you she would have given her own life for my father to be healthy and live. She will weep that her soulmate is gone despite her best efforts to save him. And then she will tell you how she lost her patience and grew tired towards the end. After all tireless efforts, she now has caregiver guilt.

As their oldest child, I often wonder if I did everything to properly assist? I was privy to their life insurance plans and investments — should I have encouraged them to invest in a long-term care policy? I’m the Director of Events at an insurance brokerage firm — did I fail my parents? Should I have taken family medical leave during the last few weeks of my father’s life and helped more frequently?

Caregiving has a tremendous impact others. Their actions are the definition of strength and courage while surrounded by heartbreak and human suffering.  I watched my mother transform into a real-life superhero. She put my father’s needs above her own; she cared for my father selflessly for seven years. Her actions were a reminder to our family that she was there and my father was never alone. 

I think we often overlook the caregiver and tend to think they are mechanical. Maybe it’s our hectic schedules and tendency to procrastinate; maybe it’s our fear of the unknown. Or maybe it’s because our caregivers are the most selfless group of individuals on the planet and are acting out of pure unconditional love. 

Caregivers are the definition of human bravery and wisdom during our darkest moments. 

After seven years of watching both my parents endure endless pain and suffering, I decided to compose a list of suggestions to help care for the caregiver. 

1. Visit them! Don’t stay away because you are fearful of the what ifs. The entire family never forgets the people who continue to visit despite how bleak the patient’s health is.

2. Keep all lines of communication open. The life of a caregiver is not easy.  They need someone to confide in. And if you’re that person, just listen. 

3. Remind the caregiver to stay up-to-date with medical appointments for themselves. Too often the caregiver is too exhausted to take care of herself/himself and will put off their own medical needs. My mom endured a perforated colon and hernia surgery during my father’s illness. 

4. Allow the caregiver to let go of some responsibilities. Offer to take the patient to some doctor’s appointments. If the situation is anything like my parents, there were frequent doctor appointments. This will give the caregiver a break and help the patient tremendously.

5. Send them flowers. Who doesn’t like flowers? A little sunshine goes a long way.

Follow this journey on Love is Infinite.

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When You're Too Sick to Work Full Time but Not Sick Enough for Disability

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I am currently 33 years old, single, employed, own my home, car, etc. From the outside looking in, there are many people who have shown jealousy of me and have stated in their own way that I have had my life handed to me. Let me promise each and every reader, I have had nothing in my life handed to me, and in addition my life is not at all as perfect as it may seem from the outside looking in. It never is, is it?

When I was 29 years old, I was having a physical exam by a physician when he felt a lump on my throat. He assured me it was probably nothing and sent me for an ultrasound. The ultrasound showed three masses on my thyroid, so a biopsy was ordered. The biopsies showed two of the masses as benign (non-cancer), and one mass as “suspicious.” They recommended I have a partial thyroidectomy to remove the “suspicious” half and advised me that I would take a pill for the rest of my life. They explained it as the “good cancer” and “no big deal.” Unfortunately, when I had my surgery done, all three masses were malignant (cancer) and had already spread through my lymph system. After much treatment, tests, money and pain, it was discovered that I am also immune to the primary course of treatment they use to treat my type of cancer. My cancer is now listed as a “chronic cancer.” It is simply something they let grow until it gets large enough to surgically remove, and then we do it all over again.

There are many horrible side effects from this. Fatigue, weakness, sleeplessness, pain, nerve problems, migraines, voice issues, dry mouth, hoarseness, lymph inflammation, lack of immune system — I could go on. It has left me with a very poor quality of life.

I am left in this huge area, where I think many chronically ill people are. Too sick to work full-time truly (I average two to three days a week at this point), but not sick “enough” for disability (although I have not applied as of yet).

I have so many people at work ask me, “What are you doing here?” I hate questions like these, coming from people with dual incomes. All I have is me.

This is my biggest frustration — there is no one to give me a ride home after a procedure, no one to help with my lawn (when I am clearly not physically able to anymore), no one to help me even sort my 32 prescriptions when I am weak and having problems with my tremor. Things like this really used to bother me.

I was diagnosed when I was 29. I am now 33. I had to accept that on that day, my life changed. Perhaps others don’t understand my battles or the reasoning for the things I do. But, maybe I don’t understand some of theirs, either. I have found many people are just truly in the dark about many of the challenges that come with different illnesses. For people who say things that are obviously inaccurate or offend me, I try to make a difference and educate them. If I would ask for more compassion from them, I have to give more compassion to them.

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Runners participating in “Race for Hope,” a 5k charity run that benefits brain tumors. Donna participates in honor of her father every year.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Facebook Friend Helped Me in Ways Others Couldn't After I Lost My Mom to Cancer

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My mother passed away from a rare cancer (uterine carcinosarcoma, formerly called malignant mixed mullerian tumor or MMMT) suddenly. It was a shock. There was no warning at all. Mom lived out of state, alone. I think I packed my whole closet, because I had no idea what to do. We had to leave immediately.

I belong to a Facebook group of just 20 or so women; we call each other sisters. We share life’s ups and downs and everything in between. We also send each other small gifts each month because, let’s face it, we most likely wouldn’t treat ourselves.

When one of my “sisters” heard what happened, she hopped in her truck and drove to be with me. We had never met in person before. She had instructions to give me a hug from each “sister” in  the group. I got every one of those hugs, and I sure needed them.

She sat or stood by me through the viewing and funeral. She read the eulogy I wrote for my mom. Even though this group of sisters wasn’t a “special needs group,” it just goes to show how important these types of groups are for people like me — and you. We need support, sometimes from someone other than family. Closed groups where you can be the real you. Without judgement.

She did things for me that my husband could not. Since my mother lived in another state, I had no other personal friends I could lean on. Don’t get me wrong, my mom has some amazing friends, but they were hers. My brother and his family and my family were all grieving. Sometimes we as special needs families only have each other online. People we have never met but share our lives with. People who “get it.” She and her family helped me go through some things that were just too difficult to do myself.

I can never thank her and her family enough for their kindness. She was there for me just because. That is a true friend. Sometimes (many times) I think we live in a lonely world. Our first priority is to take care of our family. Sometimes we neglect ourselves, but I have realized I cannot be the best wife, parent, advocate, friend, sister, neighbor unless I take care of myself. Most of my closest friends are on Facebook, and many I have never met in person. But I am oh so blessed to have them! If you are lonely and struggling, try reaching out; it helps. Sometimes when you least expect it, and need it the most.

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Riley and her friend.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Am I Ready to Accept That My Health Will Keep Declining?

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Am I ready to accept that my health will keep declining?

I often see so many people with chronic illnesses having to ask themselves this question. So should they face this sobering fact and just give up and adapt to their “new normal”?

Miranda Edwards

Having a disease like mine, health decline is inevitable. I have metastatic pheochromocytoma, a rare type of cancer that secretes an overdose of hormones called catecholamines. Each surgery, procedure and treatment takes a toll. Already living with pheochromocytoma cancer has its constant health challenges; it’s plagued me with subsequent adrenal insufficiency, severe post-operative chronic pain, multi-organ removal, extensive physical limitations and daily symptomatic attacks from the tumors. And these are only the major physical detriments.

Did I mention I’m only 25?

After my first surgery at 19 to remove my first dangerous pheochromocytoma benign tumor, I never quite recovered. The damage was too extensive. I underwent a complicated surgery, and it was difficult to come back from that. It becomes more and more challenging to get under control once the procedures start compounding, and you never really feel quite ready to take on the next.

When I took on the unwanted responsibility of living with what I was now told was pheochromocytoma cancer, I knew my health would decline even further, whether or not I wanted to accept that. There’s a certain reality we must possess when entering into these situations for our own well-being. We must have positivity for our survival and for those around us, but we must also be realistic in order to make it through for everyone involved. We can’t mistake realism with negativity.

I often say that I don’t feel I’m fighting cancer; I live with cancer. What I fight for is the ability to continuously mend myself back to health, piece by piece, taking back what this disease has stolen from me.

I fight to recapture the most important parts of my life. I fight to maintain an almost impossible level of positivity — one that is not superficial — and share it with as many other people who are fighting as hard as I am. I fight for hope when the odds allow for absolutely nothing but the opposite.

We fight for our lives, we fight to be able to smile, we fight to choke back the tears that threaten to come pouring out at any moment. We fight for the ability to continue to cope with everything we’re facing, so we can muster up the strength to continue to “live with” these diseases.

As I continue to live with this worsening illness, I have to ask myself like so many others living with chronic illness, “Am I ready to accept that my health will continue to decline?”

I’m here to tell you if your health does decline, be prepared to pick yourself up and press the reset button. Because that’s what it is: a new beginning. It doesn’t come without some devastation, but it isn’t impossible. I’ve had to do it every time; I am still doing it.

Yes, your health may worsen over time when you’re living with a chronic illness. This is why we must view it differently and be prepared to accept the pieces you lose are worth fighting for. Even though I’m physically at my weakest point currently and experiencing more pain than ever, I’m still slowly picking up these pieces.

Despite how badly I feel this time around after my latest procedure, I’m doing everything I can to feel a little better than yesterday. That counts for something to me. That’s part of my reset and my acceptance. What’s yours?

Follow this journey on Pheo VS Fabulous.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What Many of Those Inspiring Disability Stories Miss

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I saw this story on ABC News the other day, about a 16-year-old who lost her leg due to leukemia and continues to compete in gymnastics while wearing a prosthetic. It is an inspiring story. All of us face adversity in our lives, and it’s encouraging to know there are those out there who can fight through it.

I know these types of stories can generate strong reactions to some in the disabled community. And I’m starting to see their point. I also have cancer and I’m disabled. I’ve spent a couple years in a wheelchair, and I continue to need a walker and a cane, plus I need to wear braces on both legs. I’ve spent a lot of time over the several past years in intense physical and occupational therapy. I’ve seen others at therapy learning to use their prosthesis, and I can see their pain, frustration and determination. Seeing others struggle at PT has inspired me to push through my own struggles in becoming more independent.

There is something missed in these stories though. One is the cost in money and time when you need physical therapy. Therapy is tough, time-consuming and expensive. Consider prosthetics and braces. They are expensive and can be uncomfortable and painful. Those nice prosthetics you see athletes wear? They’re not usually covered by insurance. You need means to afford them. For those of us with cancer and other chronic illnesses, your body changes all the time. You lose weight, gain weight, age and so on. And that brace you had fitted six months ago? Guess what, it no longer fits, but insurance, (if you’re lucky enough to have insurance), may only allow one set of braces every two years. Then what?

Then consider life as you move into the world with your prosthetic, brace, wheelchair or walker. Yes, in the U.S. we have the American with Disabilities Act. It’s implementation is spotty at best. There are never enough handicap parking spots, and they get often placed in the strangest places. And no one seems to know how to build a proper handicap ramp. I’m fortunate in that I’m able to drive with an unmodified car. Modifying a car for someone is very expensive though. Let’s say you manage to drive to your destination, park and get up the ramp. You then have to deal with the dreaded front door. It’s as if the world only wants you to watch because you’re not invited inside.

The young woman in the ABC News story appears to have a lot of support from family and friends. I’m fortunate in this as well. I have a support network that provides the motivation and means to get me to my therapy and doctor appointments. But consider why we have these stories. Unfortunately, there are too many children and teens living with leukemia. Why don’t more of these kids have access to these types of prosthetics? Why aren’t more of them at the rehabs that provide the training to learn to become more independent? That’s the tragedy in these stories. The number of people in similar situations is such that we’re not unique or unusual. We’re just your neighbors, school mates and co-workers. We deal with life just as anyone else, with whatever tools and support we have available.

But we need less stories on inspiration and more stories about those obstacles, and on how as a society we can fix these obstacles. We need improved means and access to doctors, medicine, therapy, prosthetics and adaptive tools. Our U.S. health insurance system has to be fixed. We need a 2016 update to the ADA. So whenever you see another story on inspiration, please do something. Donate to your favorite charity, (my favorite is the Jimmy V Foundation). Call someone you know who may be struggling and offer to help. Call your congressperson or senator and ask them to revisit and update the ADA. We all need to inspire each other.

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