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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…
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The End of Summer and The Start of Fall
This summer has been a whirlwind. It feels like so much has happened. To recap, I took five summer classes, went on a trip to Fort Wayne, celebrated my 21st birthday, and got two surgeries. It’s been a big summer and those are only the highlights. Not to mention the global pandemic and how that changed everything. I finally finished my summer classes. That feels so good to say. I finished my classes on the 19th of August and I have until the 7th. Up until the end of July, I had no idea what my classes would even look like. As my schedule sits now, I will do all…
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A Review of RoadID
Recently, after renewing my license I decided to get my medical alert band. What a random time to get a medical alert bracelet. It’s not random, I was given the option to signal I had a medical alert bracelet on my license. I thought this was a fantastic idea, I checked the box right away. Then I realized I really needed to get one and finally commit. I started my search for a medical alert bracelet over a year ago. It’s been quite the journey. I struggled to find one that was cute. I wanted it to look like jewelry but also have it be clear that it is a…
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Travelling with Crush
A few weeks ago, Crush and I went on a trip. This was a milestone for us. It was our first time travelling together. I didn’t know what to expect. We were travelling over 500 miles and spending over eight hours in the car. I wanted to ensure both Crush and I were taken care of. I made sure to stop every few hours so Crush could get out, potty, and walk around. It was nice because I also got to do all of those things. I gave him water and kept the air on high to keep him comfortable. Of course, that means I was bundled up like the…
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This is Wrong….
I’m going to talk about a repetitive experience I’ve been having. I think that anyone in the chronic illness community can relate to this. It’s frustrating and invalidating. Let me explain. When I’m having an issue, depending on the severity of the issue, I go to the doctor. The doctor decides how they want to proceed and orders testing. I go through extensive testing to get down to the root of the problem. Finally, one test comes back wildly off. Eureka, an answer. Finally, after all this pain and struggling. I have an answer. This is where the problem starts. For many of us, getting this answer is something to…
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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…
