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Why My Health Will Always Come First
Having a chronic illness comes with some difficult balancing acts. When I was in the thick of it, my only focus was my health. Now, I am doing better and I don’t have to focus on my health as much. That’s relative to how much vigilance I had before. Still, I’ve gotten to take a step back and relax a bit from the rigid life I was living. That comes with mass amounts of relief but it also has come with it’s own learning curve. As I’ve gotten busier with school and a social life, my health has fallen into the background. With Crush by my side, it’s easy to…
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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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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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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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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…
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College and Chronic Illness
I can’t believe I’m talking about Fall. It seems like just yesterday that I was writing about the first signs of Summer. Now, it’s time to go back to school. I see posts all the time asking how to navigate college with chronic illness. Here I’m going to lay out how I manage school with POTs and my other illnesses. Register with Disability Services This is always the first step and it will save you if trouble arises. Every school that is public will have some version of a Disability Resource Center. When I came to the University of Minnesota, I contacted them right away. The waiting list was long…
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Stop Saying These 5 Things to People With Chronic Illness
I have had lots of poor experiences with people sharing their opinions on my chronic illness. The majority of people I’ve met with health issues experience this same problem. Everyone wants to help but unfortunately, it’s often more hurtful than helpful. I know that most people mean well. I know that everyone wants to come up with a solution. I know that it comes from a place of love. That said, if someone is sharing their experience, ask before giving advice. In my experience, I need to explain that I’m venting and don’t need any help. I just need to state how I’m feeling. If you can’t fight the urge…
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My Experience With PTNS
Last Friday, I had my first experience with PTNS. For those who don’t know what that is it’s “Percutaneous Tibial Nerve Stimulation.” It’s used for those who suffer with incontinence. It controls the messages the bladder receives by stimulating a nerve. There’s a lot of science behind it but I don’t fully understand it all. I’m using it to help my bladder leakage. If you’ve read my post “A Long Road That Ends With Surgery” you know that this is the second to last intervention. After this, I get a nerve stimulator placed in my back. The hope is that this therapy will give the doctors a better idea of…
