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.

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Sing, Sing a Song…

You may not be aware of this, but I Love Love Love live music. When I’m feeling up to it, I try to attend live shows, open mics and new formations of some of my fave local musicians. Music makes me feel better and is an integral part of my life and health. I don’t think that I can overstate the importance of rhythm in healing and pain relief, from focused breathing and Lamaze to Yoga and Tai Chi, our bodies crave it. Alas, that is for another post. This blog is all about the creativity that was swirling around an event I attended, I could feel it flowing through the room. My roommate and most of my friends are musicians. I get to hang out with some really talented and creative people and, most of the time,  I don’t even have to leave the house. I will freely admit that I can get a bit envious of their talent. I’ve always wanted to be musical and therein lies the rub. I haven’t played an instrument since middle school and even though I love to sing, I tend to sound like a dying walrus {so I limit my public displays to comedic relief and acts of vengeance}. My real talent lies in my uncanny ability to hand over a cover fee and support my harmonic homeys.

So how did I end up taking part in a singer/songwriters’ event the other night. My mad skillz were put to use at the door and I thought that was the end of my involvement. I went to support my friend and the several other people who poured their souls out on stage. They put their egos aside and asked the audience to critique their songs. What an exciting and humbling experience to be a {albeit small} part of the creative process in a very intuitive, personal and enjoyable way. I loved it and I want to go back. I had no idea what kind of music to expect, I had only heard a few of my friend’s songs and didn’t know anyone else. Out of the 15 acts, there were at least 7 different musical genres and each song was original. I definitely increased my hipster cred, and I hope that they all will find great success. Everyone in the audience got a critique card for each song. We were asked several questions: Who does the singer sound like? On a scale of 1-10 what would you rate this song? What do you think? There were several other questions and the Songwriters Association obviously spent a lot of time on these cards to help the musicians hone their craft. It was their inaugural event and I think it will be quite successful. I’m jazzed to see how they will build this program and share it with the rest of the songwriting community. As I was listening, I started thinking about what a great idea this showcase is.

I am quite excited to see how we can build our Chronically Awesome community and share in our creative endeavors. Jules announced the Chronically Awesome Foundation on the Chronic Chronicles podcast a few weeks ago. Our group is one of the most innovative that I have ever seen. We have harnessed the power of social media to find each other and tell our stories through FaceBook pages/groups and Twitter chats. Who has two thumbs and spills her guts in a Crohn’s blog? You’re reading her, but I am just one. There are many of us and we each have a different story that we try to share in the most positive light possible. Just through our friendships we help mentor and share our tips, pointers and success stories. We also share our art, including but certainly not limited to writing. I look at the Chronic Chronicles Pinterest boards and I see so many friends sharing crochet, crafting, sewing, painting, patterns and instructions with people they think will appreciate them. My arthritis can flare terribly this time of year, but crocheting helps, I will never run short of patterns and my hands will hopefully keep their dexterity. Thanks to your sharing.

My nephew and the Easter Bunny I made him last year. Warm fuzzies all over!

Numerous studies have shown that a creative outlet can help to lessen the daily wear and tear of chronic illness. It can also raise endorphins and relieve pain. I know that sometimes we can’t keep up with our projects because we are too sick. What can we do? Share our ideas, help our friends learn new skills and/or fine tune their work. Share our insights and help them when they are stumped. We could all end up feeling better and more fulfilled. We just have to create and share. I know that I feel a sense of accomplishment when I have completed a project or helped someone else learn one of my crafts. We can still be inspired and keep learning even if we’re stuck in bed or in the hospital. One of my greatest fears is outliving my usefulness. I do my best to keep my mind sharp and try to keep up with as much therapy as I can handle. I know I’m not the only one and that’s why I want to see this fantastic community and foundation grow quick-fast-in-a-hurry.  We are a loving, positive and productive congregation and it makes a difference, so I want to share these ideas and expand our circle of friends. I can’t wait to see what we do next!

The Songwriter Showcase was a lot of fun.  They were super supportive of each other and very engaged in the songwriting and production process. My friend was my favorite performer, of course, but I was also introduced to new acts, new friends and my Reverbnation profile is a lot fuller now. How cool is that? I was duly impressed and I hope I get to go back soon.

#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!

Silly Rabbit…Tricks R 4 Kids

It’s Halloween, a very special time for a horror movie buff like me. I get to watch all manner of scary movies for a whole month leading up to the holiday, and whether it is new or old I simply can’t resist DVR’ing most of them. As a horror and Sci-Fi geek, I think of things in terms of Sci-Fi, Horror and Comic story lines…a lot. This post started off as an entry about new technologies for Crohn’s and chronic pain, but each of these made me think of a movie at first and then I realized how great they could be for patients, turning a trick to a treat.

Alien is one of my all time favorite movies, definitely a top 10 film. What scared me the most was the fear of the Xenomorph life cycle; egg, face hugger, chestburster and adult. The eggs hatch and the chick (?) attacks a human by attaching to a human’s face and, well…um…pollinating. We as humans complete the parasitic reproduction of the Alien which bursts out of the poor person’s chest in a twisted birth scene. So you can imagine my reaction when I heard about drinking whipworm eggs to try to cure Crohn’s disease, I was just a little bit incredulous. I had to check this out. This seemed like a hard core treatment for desperate patients, I should tell you I was in remission at the time. As I researched these treatments, and flared up again, I realized that I was taking Chemo meds, steroids and narcotics to manage my disease. These worms might be quite helpful to my regimen. They can’t reproduce in humans, so they are only in our bodies for 2 weeks and they help us “dirty up” our bodies. The worm study is based on the “Hygiene Hypothesis” which presumes that Auto Immune (AI) diseases are more prevalent in industrialized nations because we are too clean and can’t build up resistance. At first Worm Therapy seemed frightening but I have to admit it’s growing on me, especially when it could help remedy 60 different diseases. If it’s available and my doctor approves, I will try it, maybe with a shot of tequila.

What would a horror list be without David Cronenberg and Scanners? A great movie about a group of people who have psychic abilities and can kill normal people, the Scanners are fighting each other for world domination. When I think of Scanners I think of the famous head explosion scene…awesome! I also think about migraines, I think we all know someone who has suffered from migraines and the pain they are enduring. What could help a migraine patient without drugs or exploding their head? How about a pacemaker? Yeah, a pacemaker with neurostimulation, a device that is implanted into your back with tiny catheters that thread into your head and disrupt the pain signal. With the help of a remote control the patient can find the right amount of electricity to give them relief. Saving people from explosive migraines, one buzz at a time.

These are just a couple of examples of my favorite movies and treatment ideas that seem scary at first but after further review can be really sweet. They start with a trick and end with a treat, a much better fate than the poor schmucks in these movies. Happy Halloween!

A Spoonful of Sugar…

Posted in Newer Posts by Healthier Stay on January 1, 2012
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I’ve been asked to write a theme, “What does Chronically Awesome mean to me?”. The answer is quite simple…Supercalafragilisticexpialidocious! In the film Mary Poppins, Mary changes the lives of 2 very sad children and shows them that there are many wonderful times to be had even when life is rough. She shows them that life is what you make of it. If there is a better analogy to living Chronically Awesomely*, I haven’t found it.

A Spoonful of Sugar helps the medicine go down. Life with chronic illness can seem like a never ending cycle of medicine, doctor’s appointments and hospital visits. Mixing that with pain, frustration and brain fog can cause life to feel like a great black hole sucking your life away. This is when we decide how we will live our lives. It is so easy to get lost in the dark swirling limbo of pain and disease, but it can be just as easy to build a life with joy and purpose once you get used to it. It sounds silly but it’s all about finding the wonder in life again and rewarding yourself for the effort. Eventually life is better and we can deal with the bad effects much easier.

I used to sleep my days away. I couldn’t always tell the days apart. I felt like I was worthless because I couldn’t work and therefore I wasn’t a functional member of society. I had had my life planned out and once I got sick it all seemed to crumble. No more college (4 quarters to graduation) no more job, no more dreams. I had no answer when someone asked me what I did for a living and I stopped going out. I was already depressed and my stagnation only made it worse. I just didn’t care. I was in massive pain and cowed by fear and embarrassment so I let it all control my entire life for years. Seven years to be exact. Those were my dark ages. When I finally realized that my life was passing me by I decided to take some kind of action. I chose not to be a victim any more, I was going to control my destiny. That was when I decided to start writing a book and building a good life. I was here so I’d better make the most of my time. I also decided to start seeing a pain therapist and rein in my life. That was 5 years ago and I have never regretted it. I made the choice to live according to my abilities rather than my disabilities. I’m still sick but I don’t let that be the ruler of my mind these days. I made the decision to change on my own but I needed lots of support from my friends and family too.

Chronically Awesome is a lifestyle and a community. Life is measured one day at a time and choosing a new Lifestyle is measured moment to moment. We need friends that understand to help talk us out of a slump and to help each other through a flare. I have watched this community grow so fast in a year and a half, we have expanded from a few hundred people on the internet to thousands, some people have even started meeting in person. That is fantastic!

When someone asks me what Chronically Awesome is to me, I think of how much my life has changed since I decided that my worth was a price above rubies and that my life would still have meaning. I think about the sweet taste of success with each achievement that surpasses my expectations. Life is hard, healthy or sick, but sometimes you just need to believe that someone is out there with a helpful song and a nice smile. My life isn’t “Practically Perfect in every way” and I can’t fly with a parasol but I can enjoy as much of the experience as possible and save up for a jet pack. To me that’s pretty supercalifragilistiChronicallyAwesome!

*not sure of the grammar


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