Over the last year as my health has diminished I realized I would need a mobility aid to keep up with my life. Grocery shopping wore me out, long walks made my knees hurt and give out. Taking my kids to parks or play dates was an exhausting idea. I have three children, 5 and under, and I use a cane when I need to be upright for any significant amount of time, I also use it when I know I’ll be walking on uneven terrain. (My daughter ran off with my cane for an “adventure.”) The reactions I’ve received to my intermittent use of a mobility aid vary from…
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Skyscraper: To those with a few broken windows…
A few years ago when I heard the song Sky Scraper (Demi Lovato) for the first time, I immediately saved it to a playlist of songs that make me feel powerful. This song isn’t an upbeat typical exercise song, but I’ve found that it’s very special. Whether you are in the midst of a difficult relapse, a flare, a deep depression, etc… it’s for you. The song opens with “Skies are crying, I am watching. Catching tear drops in my hands. Only silence has it’s endings, like we never had a chance. Do you have to make me feel like there’s nothing left of me?” In my darkest hours, my…
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Message to my girls on my bad days
Today is one of those days where I just don’t have it in me. What is “it” you ask? Motherhood. I cannot mom right now. Well, better phrased, I cannot live up to what I thought moms were supposed to be, right now. One of you gave the other a black eye this week… one of you is a lot better at dishing it out than taking it. I have emergency Lays chips in the cabinet… we’re currently trying to eat cleaner to reduce our frequent health issues, but we’re always just a meltdown away from handing you a Lays and eating Papa Murphy’s for dinner. Laundry… oh, laundry. Where…
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Be all there
This was taken on my walk through the Rose Gardens the other night. In my heart, I wasn’t just in a tucked away garden in the middle of Tulsa… I was as excited as if I were exploring the Redwood Forest, or walking through meadows in Yellow Stone, or on a hike through the Appalachians. Some of these places I have seen before, some I have not… I used say, “Someday when we can afford to go on adventures…” But I’m realizing how insignificant money truly is in the grand scheme of things. Money calls the shots so often… the only thing money cannot do is give me experiences. I…
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Storms
I am an avid storm watcher and aficionado. Perhaps it’s a twisted hobby I gleaned while watching hurricane after hurricane beat against our Sulphur, Louisiana childhood home, or maybe it’s just one of my quirks… the point is, I feel connection with storms. I found myself thinking about this this morning as a loud thunderstorm passed over Tulsa. I remember the warm thunderstorms of my childhood, the smell of rain through an open window. I remember making mud pies in our front yard (ruining the already slim chance of grass growing up there.) I remember “swimming” in the flooded streets. I remember singing loudly as we played in rain from…
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Adaption’s part in evolution and chronic illness
In my journey to receive diagnosis, I did a lot of researching. I do not use this word lightly, as I did much more than webMD my symptoms. What’s ‘wrong’ with me doesn’t show up on standard lab tests. I physically appear well and youthful. I don’t even appear to be in much discomfort… and this is part of the problem. I live, day to day, with pain around an 8. “Pain” as it turns out, is felt by the body even if you are unable to neurologically comprehend what’s going on. Neuropathy. Specifically small fiber neuropathy. Studies have shown that 50% of people diagnosed with Fibromyalgia were found to…
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Stronger Together
I love how much support can be found in the chronic illness community. We all have bad days, sure… but I have never felt so capable. Just because my burden is too heavy to carry alone, doesn’t mean I’m unable to help others. In fact, I think we all can relate this: I picture it more like these shoulder-dollies. It’s hard to get a good grasp on our problems… it’s not that we aren’t strong, but maybe we were trying to lift a washer by ourselves, with just our arms. But we can only get so far like that. We ought to get help, so we can use our strength…
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It’s time to change the dialogue around chronic illness
I see you. You’re struggling, you put on a brave face, you are as active as your body will let you be. You don’t say much about your condition on platforms like social media, because everyone knows just enough about medicine to be dangerous (or at the very least, naively condescending.) “Have you tried___” “My aunt has ____, and she is fine.” “I bet if you just ____” “I’ve heard some people just have to eat XYZ.” “I can’t imagine, I could never give up ____” “You should look into ____, that sounds scary.” “Buck up, don’t dwell on the negative.” “Do you even want to be well?” “Psychosomatic.” Sound…
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Trauma: when you feel like you’re falling
Four years ago, during one of the hardest seasons of my life, I learned that I had PTSD. I think back to those days, that season, and remember vividly how cloaked my perception of life was. It’s truly the worst when you realize what is happening in your mind, and yet you feel helpless to make it stop. My PTSD stemmed from a childhood trauma, being on edge was my normal. But it was the birth of my first child that alerted me to the hyper-vigilance I lived with daily. Most women get an intense shakiness after delivering their babies, one of the reasons this happens is because of the…
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I Use Labels
As someone who combats chronic illness daily, you may not be surprised to hear that I get a lot of advice. I don’t just mean advice about how to manage it, or treat it… but advice around how to cope with it, or overcome it. I don’t think these are individuals who are unfamiliar with hurt or pain, but I do believe they misjudge me. You see, I actively embrace labels and diagnoses, because I believe that knowledge is power… 1. Knowledge helps me be proactive, to take good care of my vessel. The way I see it, it helps me care for the body God gave me. I can…
