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.

Here’s The Thing…Lupus the Great Imitator

**Since this post was written (March 2012) there have been some changes to the podcast roster and time. Jules and I now host Chronic (Illness) Chronicles on Saturday Mornings at 8am PST/ 11am EST. We start 2013 with a new episode on Saturday January 5 and I hope you will join us!**

Merry Holidays and Happy New Year! ~dk

For this week’s Chronic Chronicles podcast, Jules, Gini and I decided to write posts about each other and our illness. We are trying to envision life with their chronic qualifier {i.e., disease}. I am writing about Jules and Lupus and we will be discussing all of this as our main topic on Friday at *12N PST/ 3pm EST*. 

I haven’t known Jules for very long, we first connected when I responded to her “ad” for a Crohn’s writer for What The Jules. We corresponded mainly by email and I was a little intimidated, ok very intimidated. She had a great site, many followers and a style of patient advocacy that I hadn’t seen before; snarky, adult and a confident “get on with it or get over it” attitude that is so refreshing to see in the chronically awesome world. Basically, she won’t take a lot of crap and she’s kind of a badass. I wanted to be like that and to grow my blog and website,  all the while staying true to myself. She is a leader in our community and I respected her, so I wanted her to like my writing. I asked her what she wanted me to write about and she gave me free reign to choose my own topics, as long I didn’t use the words, “irregardless and anyways”. Um… not a problem!

Now I’ve gotten to know her better, she and I talk everyday and I’ve gotten to know her and what she is fighting/living with everyday. She battles for and against her body every day. She reminds me of R.J. MacReady from John Carpenter’s The Thing , MacReady {Kurt Russell} has a natural leadership ability and is friends with everyone on the crew of  an Antartica science station. He wears a sombrero to work and he has great hair, if he shaved his beard I probably couldn’t tell him apart from Jules. He also fights an alien that has the special ability to kill an organism and camouflage itself as the organism, this is how it breeds. MacReady is in a life and death battle with an external enemy that mimics it’s prey. Jules is locked in an internal battle with Lupus, an autoimmune disease that is also known as “The Great Imitator” because it can resemble so many other diseases. It’s not just that they fight a similar foe it’s how they fight that matters to me.

Jules is one tough cookie. She works on her website all the time, she keeps up with so many people on social media and she doesn’t pitch a bitch about her pain or her suffering. She uses them to convey what we as Chronically Awesome people can do. I’ve talked to her when she was in ridiculous pain because the Lupus has jacked up her kidneys so bad. I’ve seen her patch up her feet because the nerves in her extremities were causing so much pain. I’ve texted her at Disney Land where she was standing in line, with her cane, ready to ride the rides even though she was having a bad day. I only know about these occurances because I’ve witnessed them in some way or other: I know about the kidneys because she sounded like she was in pain, her feet because she was nonchalantly patching them up on a hangout while I happened to be paying attention and Disney because I was actively chatting with her and asked how she was doing. She doesn’t complain, she clears a path to her life and does her best to avoid the clutter that is chronic illness. She puts on a brave face and fights a disease that can be mistaken as Chronic Nephritis, Diabetic Neuropathy and Rheumatoid Arthritis, but is actually Lupus trying to take over her body. Lupus is so complicated that Dr. House can’t even nail a diagnosis. She puts on a brave face and soldiers on, just look at her FB, Twitter, G+ profiles and website to see how many people she inspires. MacReady fights the big fight and won’t take whining from anyone, he does what needs to be done, no matter how scary the task. You can see in the movie that he is terrified, his eyes are wild at times, but he always does what’s he can to save his colleagues and humanity.

Jules and MacReady are a lot alike (she faces Lupus and kicks its ass, he fights the Thing for days and kicks it’s ass), but they have one key difference. MacReady fights and wins and waits to die. Jules fights and wins and wakes up to fight another day, every single day and she does it with a positive attitude and usually while wearing fantastic shoes. She fights constant fatigue and fevers and headaches, oh my. Yet she’s still there to maintain and build a website, a blog, a podcast, a marriage, a relationship with her daughter, her friendships AND start her new business! Most people can’t do all that healthy and she does it every day! There is a dirty question that we Chronically Awesome people are asked a lot, “How do you keep going?” or “How do you get through it?”, the answer is usually, “I just do, like with anything else.”‘. Jules does “it” with panache and gusto, two words that aren’t normally associated with Lupus.

I’m very lucky to have Jules as one of my very best friends and I feel like I’ve known her forever even though it has only been a few short months. We inspire and support each other and as much as we chit chat back and forth, more than 2,000 miles apart, we rarely talk about our illnesses except when we are working on podcast prep. We try to keep to a no whine zone in real life and expect it of each other. Jules would beat The Thing and be ready for the next challenge, while MacReady was still trying to work the flame thrower. I’d bet on Team Jules.

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