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Five Businesses That Spread Dysautonomia Awareness
It’s still Dysautonomia awareness month!! I wanted to highlight a couple businesses that are run by those living with Dysautonomia. This is a great way to spread the word about Dysautonomia. It also supports those who live with a chronic condition. I really hope you find something you like, if you don’t go over and support their social media. All of their links are below! Spoonie Sister Shop This Etsy store is tailored to spreading awareness about rare chronic conditions. All of their items are cute, fashionable and affordable. Personally, I’m a big fan of the “Pumpkin Spice and No Unsolicited Medical Advice” shirt! Grace and Brace I bought my…
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Why I'm Open to Changing My Plans
Right now, I’m sitting in a place of discomfort. I always have a plan. I’ve always known what I wanted. Suddenly, I’m clueless. I’m in my final year of school and up until a couple of weeks ago, I was going to Canada next year. That was my destiny. I got home from Ireland and made it law that I would once again leave the country to study. I still want that. I still want to go to graduate school, but I’m not sure if it’s what I want right now. I haven’t given up on Canada by any means. I will still apply. Fingers crossed, I get in and…
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Four Ways to Stay Warm in Fall
The weather is changing and whether you’re a fellow spoonie or not, you may be feeling the effects. I always struggle with the changing weather. For me, my circulation becomes a big problem with cooler temperatures. Having Raynaud’s phenomenon, if I don’t stay warm enough, my limbs will turn purple. That’s the best case scenario because once they start going numb, I know there’s a problem. Here are five ways to stay warm in the fall! Layer Up! This is obvious but there are lots of options you may not know about. When I started having issues, I’d end up sweating through clothes. I layered too much. Then when I…
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How to Prepare for Interstim Surgery
Recently, I had surgery to implant a battery into my back. This connects to a wire that stimulates my sacral nerve. This process of getting to this point was extensive. I started with PTNS, which is nerve stimulation that goes through your foot. After having success with a few trials, my best option was to move forward with Interstim surgery. I had no idea how to prepare for this. I decided to jot down a few ideas here. I hope you find them helpful. Track Symptoms I saw my surgeon only a day or two before surgery. At that point, they asked how my symptom tracking was going. I don’t…
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Why I switched To All Natural Products
The past few years have been quite the journey. A journey with chronic illness. A journey of self discovery. A journey of finding out what is right for me. In my experience, I’ve found that buying natural not only makes me feel good but is better for me. After a year of being sick, I made the choice to become vegan. Going from vegetarian to vegan wasn’t difficult for me. It made an extreme difference for my body and mind. Since I had a positive experience becoming vegan, I wanted to try more natural based products. Of course, not everything I use is natural. Not only is it expensive but…
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Dysautonomia Awareness Month
It’s Dysautonomia awareness month! October is dedicated to spreading the word about Dysautonomia. My personal journey with Postural Orthostatic Tachycardia Syndrome has been extremely turbulent. At its worst, it took away my ability to walk and function properly. I am grateful for the tremendous amounts of help I received from doctors, family, and friends. Everyday I am symptomatic in one way or another. Despite this, I continue to thrive as I learn to work with my disability, rather than against it. Unfortunately, not everyone has had a journey parallel to mine. Millions of people live with Dysautonomia. POTS specifically has a significant diagnostic delay. This leaves patients struggling to find…
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One More Surgery
I talked about getting my wisdom teeth removed over a month ago. The last several weeks have been crazy busy. Finally, I have it all set up to get my wisdom teeth removed. It couldn’t have had better timing either because my jaw is really starting to ache. I’ve had conversations with my doctor. As well as an anesthesia team, and the oral surgeon. We are moving forward with surgery at the hospital. This will ensure my safety. When I got my tonsils removed, I had significant uvula swelling. The swelling could’ve been a result of the trauma to my mouth or an angioedema reaction. Anytime the culprit could be…
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An Update on My New Diagnosis
If you follow my blog regularly, you know that I got a new diagnosis recently. I have been diagnosed with Bile Acid Malabsorption. If you don’t know what I’m talking about, go check out “A New Diagnosis.” Since being diagnosed with BAM, I got started on a new medication. I wanted to give you an update on how things were going. To help process all of the excessive acid in my stomach, I started taking a new medication. It’s known as Cholestyramine. I take it before lunch and dinner. I couldn’t tell you one thing about this medication besides the fact that it tastes like chalk. All and all though,…
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I Am Officially A Robot
I am now, officially a robot. I have successfully gone through the Interstim procedure in both stages. I have a battery implanted in my back. This connects to a wire that stimulates my sacral nerve. Check out my blog articles “A Long Road That Ends With Surgery” or “I Had Surgery.” Those are the prerequisites to understand this one. This nerve stimulator helps to give me more control of my bladder. If you’re unfamiliar with nerve stimulators, I’m going to explain a bit more. I have been dealing with urinary incontinence for almost a year. I am unlike people with urge incontinence or overactive bladder. I leaked small amounts of…
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A New Diagnosis
This post is about a new diagnosis that requires information on bodily fluids. If you’re sensitive to bodily functions, come back on Monday for a different article. For those of you who have stayed, welcome. Let’s talk about stomach problems. I have had stomach problems for years. The majority of people in my family have one issue or another. I have chronic diarrhea. On my worst days I have diarrhea at least eight times a day. It is painful for a lot of different reasons. Along with diarrhea, I have intense bloating and stomach discomfort. I often can’t eat without having to go to the bathroom within twenty minutes. It’s…
