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
Dear Friends, I have been mired in the land of self-pity and just general misery. There are things going on in my life and they are taking nearly all of my mental energy. While some people find it easy to write about the gritty and very personal things, I don't. I have certain boundaries that … Continue reading Chronic Pain, How Fun
I wanted to share this post from Beth Morton, another one of my favorite friends from the Twittersphere. In it, she so eloquently explores the isolation and loneliness often associated with chronic illness. If you enjoy it, which I know you will, I really recommend following her blog, The Counterfactual Brain. You can also connect with her on Twitter @beth_morton, where she is absolutely brilliant when it comes to research and sharing cutting-edge advances for migraine. She also makes a great friend!
I have been trying for a while to write about loneliness and chronic illness, but everything comes off as depressing and that’s not my intent. I’ve considered just not writing on this topic, but loneliness seems like an important one. Studies have shown it is related to an increase in heart disease and even premature death. Loneliness isn’t exclusive to those of us with chronic illness, but I suspect it is something that we face disproportionately. This struck me most vividly as backlash mounted over Facebook’s recent privacy issue. People calling on others to delete their Facebook accounts don’t understand what it is like when social media is your main source of social contact. When I look back on the last five years, dealing with two chronic illnesses has taken a lot from me, but the loss of social connections is what has been hardest.
It started in 2013…
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This Friday, I am doing something a little different. I am sharing this blog entry from one of my favorite people ever. One of our most recent bonding experiences has been over the discussion of occipital neuralgia. This is another diagnosis we have in common, although my diagnosis is more recent. Recent, as in only three days in. I am a proud recipient of my first nerve block, which has made a world of difference in the quality of my life. At the same time, I am so afraid of getting my hopes up, just to have them dashed. As I was told recently, the road to recovery is not linear. There will be times where I make progress and times where I experience a setback. It is not exactly how I want things to go, but it is better than not experiencing progress at all.
I am going to wrap this up, so I can return to icing my head. I hope you enjoy this post and give Autonomic RN a follow.
At the end of February, I wrote about my upcoming nerve decompression surgery. Within that post, there was a promise that I would keep everyone updated. Here it is.
Yesterday was exactly five weeks post-op! The time has gone by so fast, and at the same time has crept by while dealing with pain and the recovery period. After the initial shock had faded away about having two stunning black eyes, I had to keep pinching myself. There was no way that this could be reality. When I went in for surgery, I had a whopping migraine and when I came out; nothing! Of course, the surgical pain was not an enjoyable experience but none of it was migraines.
I have been 100% migraine free for five entire weeks. My hope for the surgery was that the migraines would be less frequent and severe. That would have been a win…
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Dear Friends, Given the heavy nature of my post last week, I decided we all needed something lighter. Recently, I was talking with my good friend Kim, of AutonomicRN- A "Dummies" Guide To Learning To Live As A Patient Instead Of A Nurse. Given that both of us live with migraine, autonomic dysfunction, and chronic … Continue reading If You Are Laughing It Can’t Hurt
CW: death Dear Friends, There is something that is weighing on my heart and I needed to get it out. I need to see the words form, flying across the page in a flash, and spilling out like water. I need to talk about death and I need to talk about grief. I generally try … Continue reading Grief: Chronic Illness and The End
Dear Friends, Self-care. I want you to stop right now and think of what the term means to you. The term is ubiquitous and conjures the idea of spa days or doing something out of the ordinary to indulge. Maybe you are thinking of your overloaded Pinterest board with inspiring quotes and recipes for homemade … Continue reading Self-Care:Caring For and About Yourself