Dear Friends, I started this post days ago, erased it, and then started it again. By the time I got to today, it was a semi-living shell surviving solely on a mix of wretched emotions. I am not just talking about the type that are a bother, but more the kind tied to things … Continue reading A Bad Year For The Roses
Dear Friends, On Tuesday, May 29, I had the honor of presenting at a webinar hosted by the Society for Participatory Medicine. As my very first online webinar, I admit that I was nervous. I have presented before, but in a far different capacity and with less technology involved. I wanted to provide my notes … Continue reading The Sadness of My Notes on Social Isolation & Loneliness
Dear Friends, Sometimes I dance in my kitchen. I close my eyes and listen carefully to a beat in my head. Tap. Tap. Tap. My body sways slightly and muscles strain, lifting me up on my toes. I reach one arm out in a fluid motion and then the other. I stack my spine, sliding … Continue reading Dancing Through The Pain
Dear Friends, It is an incredibly humid day, with a heat index so high we've cancelled school locally. We are due for storms to roll in, but I do not know if or when they will materialize. There is a sense of almost suffocating as I sit here in the dense air and pray for … Continue reading When The Lightening Strikes
Dear Friends, Tuesday was my sixth day in a row with a migraine. It wasn't just the typical migraine pain or the nausea that I found particularly distressing, but the fuzzy feeling of my face and arms. While this is a particularly miserable byproduct of my aura and is also related to my occipital … Continue reading Toradol, Party of One
Disclaimer: This piece has been entered in the Patients Have Power Writing Contest, run by Clara Health. It is designed to raise awareness about clinical trials and the importance of breakthrough research. I am passionate about this cause, as it brings hope to millions of individuals, like me, who have chronic illnesses for which there … Continue reading A Lesson In History: Clinical Trials Mean Patients Have Power
Dear Friends, It is just a bit after three in the morning and I am awake. I am decidedly more awake now that I just watched my youngest cat run into the side of the stove. Now, typically, when my eyes are open at this hour, I stay in bed and try to remember to … Continue reading Your Potential Self Is Infinite
Dear Friends, I sit here on a relatively gloomy Tuesday, contemplating the deliciousness of ice cream (which is coconut 'milk' based due to food allergies). I am also having serious thoughts about how we, as a society, define a friend. I recently had my online friendships criticized as "not real" and that stung terribly. If … Continue reading Friendship When Chronically Ill: The Importance of Finding Your Core
Chronic illness can bring enormous loneliness, but imagine if you had a support system that became something more than family? I am eternally grateful to know the closeness of sisters who aren’t blood. Yet, we are bound by something more. I suppose it is difficult to understand, especially for those who do not know, yet my core group, my soul sisters are irreplaceable. I hope that you enjoyed this blog entry as much as I did.
Chronic illness changes a person. It changes us in ways that only fellow patients know. We grieve for the life we once had and also grieve for our new life. There are so many unknown factors as we move forward.
Naturally we begin to gravitate toward others in similar situations. In my case, an amazing group of women have become a second family. We can say it like it is, find humor in the darkest moments, and give each other the strength and courage to get through the hour or day or week.
Call it intuition, heart strings, gut feelings or twinges; we know when somebody needs us. We keep track of each other, day and night. There are many times that I get a call just as I am picking up the phone to call the same person. We just know.
While this is going to be a shorter…
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Hello Friends, I realize that this isn't a Friday, but I have been neglecting you as I dealt with my personal series of unfortunate events. To get back to some sense of regularity, and assuage my feelings of guilt, I am going to attempt (key word) more frequent writing to get everyone up to speed. … Continue reading A Little Bit Of Poking