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Showing posts with the label Chronic Illness

Life with: EDS - My Life in Memes

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Warning: I get a little outside of my standard writing style in this post. As my husband says, I am usually "flowery" and subtle in the way I present things. Today I'm being brutally real.     I've mentioned lots of times on this blog the fact that I have Ehlers-Danlos Syndromes (EDS), but I thought that today I would share a little of what that means to me. It's hard to know how to communicate this to people who don't share my experience. For example:  I am never not in pain. Do I take pain meds? Yes. I take a great deal of pain meds. But no, they don't take my pain away. What they do is (sometimes) take my pain down to a level where I am able to function. My daily functioning pain level is more than many people will experience in a year. Is it easier for me to deal with pain because I am so used to it? No. No, it is not. In fact, the ongoing, constant, chronic pain builds on top of itself over and over and makes it MORE difficult to deal with. I just do...

Diversity, Equity and Inclusion: Why does it matter in Healthcare?

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 I sat in the doctor's office aghast as he pulled out his phone and Googled "Ehlers-Danlos Syndrome" (I think he even asked me how to spell it). Then, unbelievably, he looked at me and told me that he didn't know who had diagnosed me with this but they were wrong because he couldn't see that I had one of the symptoms mentioned in the Google summary. Yes, this doctor thought that his 30 second Google search "Trumped" my doctor's extensive learning and my 40+ years of living with this condition. This was one of many times I've been dismissed, gaslit, and sent away empty handed from doctors who were paid well to help me. Why? Because I'm a disabled woman.   This is a well-documented issue of women's health concerns being overlooked, women's descriptions of pain being disbelieved, and dangerously, women being underserved. For example, "According to a new study, women may be twice as likely to experience a fatal heart attack compare...

8 Ways to Avoid or Amend Sea Sickness

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  Hey there! I'm an Amazon Associate, which means I earn a commission when you click one of these links and buy something. This does not change your cost at all.  One concerns that keeps some people from enjoying all that a cruise vacation has to offer is the fear of sea sickness. Today I'd like to share a few of the preventatives and remedies that I've used over the years. I am really blessed that, during this season of my life, sea sickness is not a serious issue for me. I have experienced it in the past, and these days if there's even a hint that it might be coming, I start right in with these measures to be sure to enjoy my trips as much as possible.  I'm sure you've heard it said, "An ounce of prevention is worth a pound of cure," and when it comes to sea sickness, I'd double that! This phrase, coined by Benjamin Franklin, alludes to the fact that it's much easier to deal with an issue before it comes to pass. When it comes to sea sickness...

Cruise Hacking

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Hey there! I'm an Amazon Associate, which means I earn a commission when you click one of these links and buy something. This does not change your cost at all. I've officially been on 13 cruises now and over the years I've developed a few "hacks" that make cruising an even more comfortable and efficient way to travel. I've put them together here in this post for your convenience. The product links I've included are either to the exact item I use or when there's a better option, I link to that. Feel free to post any questions in the comments and I'll reply ASAP. Hopefully you'll find one or more things that will work for you. Happy Cruising!   Night Light You wouldn't believe how dark a cruise cabin can get! Especially if you're in an inside room. I run into the same issue in balcony rooms though. If, like me, you need to get up a time or two at night to use the restroom and you don't favor the idea of walking around with bruises, ...