After years of strange symptoms, mounting chronic pain and fatigue that have especially worsened over the past months, lots of doctors, even more tests and treatments, and lots of exhaustion, I was finally diagnosed with Hypermobility Ehlers-Danlos Syndrome (EDS) earlier this month. And let me tell you...it was an adventure getting to that point. I... Continue Reading →
From one of my favorite blogs–this blog always inspires me. I’ll keep fighting for my health until I get the right doctors and best treatment. Fight with me!
I hope y’all have a lovely Monday! First day of a new week may bring some wonderful and positive changes to all of our lives! I really appreciate y’all visiting my site today and as always love to read your comments, which I do respond to as quickly as I can! Most of the time I like to write about the random things that are on my mind. This helps me to release all those emotions and then getting your feedback help tremendously, so thank you for all of your fantastic comments!
How do you fight for your health instead of fight against it? It is so important to be vocal with your doctor and never allow them to dismiss what you say or rush you out of the exam room. We all know our bodies and how we are feeling better than anyone, so that should be listened to…
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I haven't been blogging much of late because I've been severely depressed recently. My body has been in mounting pain, and I just keep hitting walls with all the doctors I've met. How can they all not know anything about a condition that affects 1 in 5000 people? Yes, EDS as a whole is rare,... Continue Reading →
Depression is a thief,
Depression is cruel,
Depression steals motivation.
Depression takes minutes, hours, days, nights, years away from us.
Depression is cruel to anyone whom it affects.
Depression attacks everyone it can.
I am fighting depression.
I am getting up out of bed everyday.
I have better security now.
I won’t let it get me.
I will not get my past back.
I will not let my future go to depression.
Depression does not deserve me.
I will come out of it.
I will get better.
I have hope.
Finally some bipartisan work to help prevent suicide. I'm glad that both parties are taking this seriously...Hopefully this will save more lives, since suicide rates are at the highest they have been in 3 decades. [H/T: The Mighty] "New Bill Could Change the National Suicide Prevention Lifeline Sarah Schuster Staff at The Mighty Suicide March... Continue Reading →
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I think this post from one of my favorite blogs, Pain Pals, is so moving. Hoping it will be a positive source for some of you in chronic pain too!
My lovely girl drew this image for me of our pain, different for us both but with the same underlying genetic cause, and these words by poet Ariana Dancu seemed to fit perfectly in rising above the flames of pain.
It has been a tricky week as the family visited my husband’s parents, but I was too unwell, sporting a chronic dislocation & increased pain, to make the long car journey. Instead I remained at home where I was able to relax, stay in my PJs and binge watch Netflix, but had to rely on my parents to look after me. Talk about feeling like a teenager again……
Lucy’s picture really depicts how my different pains have been all consuming this week….and yes, I am still sporting a snazzy velcro sling! Hopefully there will be a real post tomorrow!
I haven't blogged in a while, but life has become so surreal, it has been hard to find the chance to do so. Sometimes I let my mind wander...and I think that life has gotten so crazy, I must be in a coma—or perhaps fell into some alternate almost-identical universe. Maybe that's why I feel... Continue Reading →
My wife asked me what I want for Christmas/Hanukkah (we celebrate both, so it turns into Chrismakkuh at our house), and I had trouble (as I often do) thinking about what I want...until I came across an amazing cat hoodie that isn't only cat-themed in design: but it can hold a cat in its pouch... Continue Reading →
The scale of 0 to 10 isn't really accurate for severe chronic pain...so I found this one for y'all instead. I didn't know until I was an adult that a lot of people feel "0-3" on an average day--I thought everyone felt some pain to lots of pain daily. This pain scale shows more accurately... Continue Reading →
Time for some fun Caturday Mews! This one comes all the way from Japan and is purrrrfect for this week: cat-shaped soy sauce art! I may be biased because of my love for cats, but I agree with the author of the article below: these are way better than latte art. I think I'm going... Continue Reading →
I love technology—especially when it helps with accessibility. This article from The Mighty explains more about the positives of self-driving cars, and how they can help people with disabilities. Hope you enjoy the post! [H/T: The Mighty] "How Self-Driving Cars Could Transform Travel for People With Disabilities By Karin Willison Staff at The Mighty Disability... Continue Reading →
I am just finally getting over a killer cold—after missing work last week for stomach issues...and I wanted to find out how others deal with being sick while also having Ehlers-Danlos Syndrome, and I found the article below. I have been having a miserable time with this cold...and perhaps my faulty collagen isn't helping, but... Continue Reading →
I'm a little late in posting this, but bare with me—just getting over being sick! I liked this (11/7) prompt better than today's (11/9) prompt, so here we go... New post for the My Mighty Month November Gratitude Challenge! The November 7th prompt is: November 7: Select three things that happened this year that you... Continue Reading →
I'm a little late to post The Mighty's Mighty Month Challenge's Newsletter for Week 2 (you can subscribe to their newsletter here) of November's gratitude challenge. Below is the 2nd newsletter I received for this month explaining prompts for this week and providing the explaining article again. I've decided that to actually not blog about... Continue Reading →
Second post for the My Mighty Month November Gratitude Challenge! The Second prompt is: November 2: Name three people who have improved your life in a meaningful way. Three people (though there are more) who have improved my life in a meaningful way are: My wife: Amanda is my light, companion, has been there through... Continue Reading →
First post for the My Mighty Month November Gratitude Challenge! The First prompt is: November 1: Select three things that happened in October that you are grateful for. For October, I was thankful for: The warm weather we had last week The fact that I got to spend special time with some of my most... Continue Reading →
I subscribed to The Mighty's Mighty Month Challenge (you can subscribe too here): November's challenge is all about gratitude, which I love! I want to be sure to be thankful each day for the positive people, animals, and things in my life, so I thought this would be a perfect challenge for me! I know it's going to be tough to remember to do this daily, but I'm going to do my best—and if I don't write them out, I want to be sure to still reflect. Here is the email I received for this month explaining prompts for the week and providing the explaining article. Let me know what you're grateful for in comments below!
MY MIGHTY MONTH
It’s November! That means time for a new My Mighty Month challenge. For those joining us from the U.S., this month’s challenge comes just in time for Thanksgiving. This month, we’re asking you to spend 30 days practicing gratitude. As part of the challenge, you should write down at least three things per day that you are grateful for...
Usually I could care less about American football, but when I found this video, I couldn't get enough of it: on Thursday, October 26, 2017's Ravens-Dolphins NFL game, a cat took to the field! I love that not only did they capture the kitty on video, but they caught kitty on slow-mo and included commentary from Tony Romo: like the cat was one of the athletes (which we know cats are). Hey, maybe kitty wanted to join the game? You can see the kitty's beautiful running form captured live on TV--and now shared across YouTube! Watch the video here:
Ahhhh October...fall is here, winds are low, Halloween is near...all the delicious candy (that really, I shouldn't be eating) is on sale—and it's the month that I proposed to my wife! October is one of my favorite months. Here in Santa Cruz County, October is typically one of the mildest, nicest months of the year.... Continue Reading →
Those of us with chronic ailments, emotional ups and downs, and consistent pain could really use a self-care kit filled with all the things to make the tough times a little better. I'm working on my own self-care kit and list of awesome helpful items, but in the meantime, I really like the one that Juliette Virzi shared on The Mighty below. What will you add to your self-care kit? Mine will definitely include stuffed animals (particularly ones that can heat up), my heated blanket, and my TENS machine to name a few. Get some ideas for your self-care kit below! Amy's Note: I have made some additions and slight changes to the list below as well—but kept the Mighty's item suggestions.
October is Dysautonomia Awareness Month, so in honor of the month—and to help spread awareness about dysautonomia—I am sharing the post below from The Mighty. There are many different types of dysautonomia—according to Dysautonomia International: Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous... Continue Reading →
The video above is a short video that shares a little more insight into the Ehlers-Danlos Syndromes and how they are so often undiagnosed for many years. The results are staggering—so many individuals wait decades before they get the proper diagnosis. Please feel free to share this widely—I want to spread the word as much... Continue Reading →
Time for the Karaoke Song of the Week How-To! DIFFICULTY LEVEL: HARD I haven't been feeling top-notch lately, so I missed the Karaoke Song of the Week on Friday this week, and altogether last week...but, as I am reminded by this quote... I'm going to say "plot twist!" and give you our Karaoke Song of the Week today: Sia's Chandelier. I love Sia's rich and haunting voice: and she has so many moving and powerful songs. This one is not her mort "powerful" song, but is probably the one you know best by her--a good intro for any Sia newbies. I'll be sure to share some more of her videos and lyrics for karaoke how-to's in the future. Here is the original music video for Chandelier: your karaoke tune of the week: