Healthier Stay


Start With an Ember

Posted in Blog Gallery,Newer Posts by Healthier Stay on November 28, 2014
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Submitted for the #ChronicallyAwesome Foundation and #Blogsupport’s #WordFeast Blog Carnival: Happy Thanksgiving!

So many things happen when a person gets sick; so many emotions, transitions and alterations to his/her life. I know this first hand, as a patient, patient’s family member and as a caregiver. I also know that the first things that come to mind in that time are terrible and despairing thoughts that just take up lodging in our heads. It can take time {months, years…decades} to see the blessings that can come from an illness too. Nothing is more important than finding the light in the dark cave. Sometimes the light is just an ember and the cave is miles deep, but there is always a coal. Once I found my ember I was able to tend it and start a fire that helps keep me warm and safe in the dark maw that is my cave of illness. The fire is so damn big these days that I can rotisserie a twenty pound turkey with it!

Find the light in the darkness.

Find the light in the darkness.

When I was first diagnosed I was hopeful for the future still, but once I started getting worse I started to slip into depression. I wasn’t able to do much and I was housebound. My days started running together, wake up watch tv sleep wake up watch tv sleep eat sleep watch tv etc., etc., and so on and so on. I had no routine and I felt aimless and like I didn’t fit into society anymore.

While all of this was happening my Dad was very sick with his Crohn’s, we didn’t know that he was dying. My mother and I were taking shifts for his round the clock care. It was a very hard time and he could have been miserable but he always had a smile for everyone. His outlook was amazing and it was contagious. He passed me an ember.

I realized that life was more than illness and that I still had gifts and talents to share with the world. I started writing a book about my experiences, I found Chronically Awesome and Jules gave me the opportunity to start blogging for her. I took back my life and I love it now. I still have constant pain and problems but they don’t plague me now. I have spent the last two and a half years on “Project Donna” and have been working on making my mind and body as strong as it can be despite my illness. All of this has raised my self-confidence to higher levels than even my healthy self had known. I know it has helped my friendships, my doctor relationships and my romantic life.

I’m always trying to get stronger and I still have a ways to go but I know that I wouldn’t have the chance to be a writer, a podcast host or an advocate if I hadn’t had to go through all of the pain. It’s not the life I planned but it’s the life I live and I want to be my best.

I hope that this post can help someone who is stuck in their own limbo, you can find more in life than pain. I’m passing this ember on, feel the warmth, find your light and pass it on.

Pass it on.

#A4Amonth Day 4: Surprise! Bet you didn’t know…Introvert to Cheerleader!

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 24, 2012
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Day 4: Surprise! Bet you didn’t know…Today’s post theme is all about the reveal. What’s something people would be surprised to know about your life as a caregiver or your loved on. Uncover it and elaborate upon in stream-of-consciousness-style.

One thing that has especially surprised me as a caregiver, is how much I have really grown as a person. One thing that I have been able to do is overcome my crippling  shyness. I really have a hard time in crowds and around a lot of strangers. It’s very easy to just live like that when it is only effecting me, but once I learned that you have to speak up at the hospital or risk your patient’s care, I started talking. I started introducing my patient and myself and writing down the Doctor/Nurse/Tech/Aid’s name and remembering it the next day. I started asking about their day and their families, how they decided to follow medicine as a career and I got to know them. Complete strangers! If I was at a party, I would be stammering all over myself or just smiling and nodding, hoping to see someone I knew. 

This change seemed to come about because I am (unfortunately for me) much more willing to exit my comfort zone to help someone I love than to better my position. It’s worked in many ways though, when my Mom was in a rehab center, she had an awful infection caused by her radiation treatment. She worked so hard to be strong and work on her rehab every day but she kept falling behind. One day we got word that the insurance company was sending her home and she was on her own…I was fit to be tied so I started calling the insurance company myself, I called the helpline and her case manager and found out that we had one way to appeal, her doctor could present her case and if he was persuasive enough and had enough documentation he could buy her some time. I went to each of her care groups, Physical and Occupational Therapy, Social Services, Case Workers, Nurses, Aids and her Doctor, told them what had to be done and withing 2 hours we had a plan of attack and the doctor was able to plead her case the next day. WE WON! They gave her another week without prejudice and tracked her progress from after her infection, not before. Our team would not have been able to work so fast if we had not had a rapport and/or if no one was there to stand their ground.

It’s not just me, I’ve seen it in so many family and care advocates that it continually astounds me, but it definitely makes me so proud! Go Patients, Go Caregivers! Go Team!

#A4Amonth Post 3: From the Fish Bowl

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 23, 2012
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It is hard for some healthy people to understand life in a Chronically Awesome household. Most of the time they think our lives are a torturous “Job-like” existence. Job, in the Bible,  lost his wives, his children, his livelihood and his health all due to a bet between God and Satan to see how faithful he was. In the end he was “reimbursed” 10 times over but he had to lose it all first. That is a horrible story to be compared to. My Dad had Crohn’s and lost his battle, my brother and I have Crohn’s and fight it every day. My mother lost her bout with Cancer,  but never in my life have I considered us Job-like. We have dealt with our problems just like any other family would, one day at a time.

Being a caregiver is often misconstrued as a duty posistion,  someone gets stuck with it because no one else will do it. I disagree. In talking with other caregivers, i’ve learned that most of us do it out of love. We try not to get burnt out because we want to be there for our loved one. We work to have social and private lives of our own and to make sure to employ respite care services so that we remain fresh and healthy. It’s no picnic living in a Chronically Awesome family, but it is my family and there is always love. Whay more can
we ask for?

#A4Amonth Portrait Post

Posted in #A4Amonth,Newer Posts by Healthier Stay on August 21, 2012
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I have decided to take part in the WEGOHealth blog carnival this week because I think this is a fantastic and fun way to blog. I have also had a very harsh year and I would like to use this opportunity to kick start my blogging again. I’ve missed you guys!

August 21 • Day 1: Portrait Post
Write a descriptive portrait of your loved one. Share qualities that make them, them – and include an image! (A photo or
creative work of them!)

I am writing about the two people I have advocated for the most {other than myself} my parents, Melissa and Dick. It may be a bit different from other caregiver blogs because they both passed away due to their illness. My father left us in 2005, and my mother just moved on in May of this year.

 

These are pictures of my parents as I remember them, healthy, vibrant, happy and enjoying their lives whole heartedly. I was privileged enough to be there to help my Dad as he fought Crohn’s disease and my Mom as she battled Cancer. I learned to be the person and writer I am by watching how they lived, loved, raised a family, fought for their strength and how they left us. I learned to advocate for myself through my Dad and I learned how to fight for and care for others from my Mumsy. These lessons are etched into my soul.

I have to admit, my grief is still suffocating me and I’m crying on my laptop right now, so this will be a short entry. Before I finish, I want to explain something to the other caregivers out there: We fight for our patients and we fight the disease and we do all that we can to navigate the healthcare world, but fighting until the end is NOT a failure. We are there to help them in any situation we can, up to and including having their backs until they go. It’s depressing as hell, I know, but it’s the truth. Do your best, give it your all and never regret being there for your patient!


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