-
Compression Gear That Will Save Summer!
I am ecstatic that summer is almost here. Covid may change the activities we all partake in, being outside in the warm sun will never fail to make me smile. Last year, the biggest struggle I had was finding compression wear. It has to be comfortable and stop blood pooling. I couldn’t wear shorts. I was pretty much stuck with pants all the time and it was exhausting. Not only are pants too hot during the summer, wearing compression stockings under them is such a pain. I found some solutions and I thought I would share them here with you! I found a company called Shapermint. They have a huge…
-
Making Life Changing Choices
Making choices is not my strong suit. When faced with a decision, I usually have to consider all my options. I talk about it a lot and lay out all the pros and cons. Right now, I’m in the midst of deciding on whether to get a surgery that has the possibility to change the course of my life. I’m not ready to divulge the topic or changes it would make. Once I finalize decisions, I’ll let you in on my choices. I find making choices somewhat difficult. The chance of making the wrong choice often feels too close to me. People in the chronic illness community have to make…
-
A Terrifying Appointment
I’m writing this on Sunday but by the time this is up, the appointment I’m nervous about will have happened. This appointment is with an autonomic neurologist. It’s scary because I’ve had a couple neurologists tell me that my symptoms go far beyond POTs. This appointment is hopefully going to give me an answer about what is going on in my body. To be candid, what the neurologists fear is that I’m in pure autonomic failure. This diagnosis would not be shocking. It’s what I started to fear as my neurological deficits become more intense. It’s the confirmation that I fear. I’m already experiencing symptoms and naming them would create…
-
What is Dysautonomia?
Disclaimer: I am not a doctor. I am speaking from experience and my own research. If you have questions, please ask your physician or go to the Dysautonomia International website. A lot of people have to ask, “What is dysautonomia?” It’s a fair question. Dysautonomia is not something that is often addressed or explained. Whether you are diagnosed or had a family member diagnosed with dysautonomia, it’s important to understand what that means. In Spring 2019, I was diagnosed with Postural Orthostatic Tachycardia Syndrome. This is only one of the diseases or syndromes that falls under the umbrella of dysautonomia. Dysautonomia is a general term. It covers diagnoses that affect…
-
A Chronic Illness How to Guide
So, you found out you have a chronic illness or you’re experiencing symptoms you can’t make sense of, fear not. I am here to give you my best tips and tricks for surviving chronic illness. This starts with talking about appointments. How to Advocate For YourselfThis is not something that came easy to me. It took about twenty appointments to get the hang of it but now I am confident going into 90% of my appointments. Be patient, you’ll get the hang of it. Start by listening and acknowledging when you’re getting defensive. Doctors will throw out ideas that may upset you. They can be frustrating or downright offensive. Most…
-
What I Wish I Knew Before Surgery
A week ago, I got my tonsils removed. This was my second surgery, I had my gallbladder removed a year ago. People will warn you about a lot of things when going into surgery. Pain, recovery time, and the inherent risks you take when undergoing a procedure. I always feel like I’m signing my life away, I guess in some ways you are. Accepting the risks of surgery is terrifying to me. It’s terrifying for most people. Even though you sign that scary form and acknowledge that there is a laundry list of risks with fractions of a percent that everything could go horribly wrong, These are the things I…
-
How to Love Your Body
Three years ago, I hit a serious fitness craze. I was working out daily, eating healthy, and focusing on my fitness goals. I was more confident than I had ever been. I loved my body and people knew it. Now, I wouldn’t say I was cocky or overly self confident. I was proud of the work that I put into my body and how that work showed. When I got sick, I lost all control over what my body looked like. If you’ve ever been on steroids long term you know what it means to have prednisone puff. I was the same weight but it looked like I gained twenty…
-
An Urgent Surgery
If you keep up to date with my blog, you know now that I need hip surgery to repair a tear. Well, that is not the only surgery I need. Last week I had another angioedema attack. This is the most severe attack I’ve had to date. For the past eighteen months I’ve been dealing with random swellings of my tonsils, tongue and uvula. This problem has perplexed most doctors and it has yet to be controlled by medications. During my last attack, I was prepped for intubation. They went through the protocol, numbed my airway but I turned a corner at the last moment. My throat swelled so much…
You May Also Like
The End of Summer and The Start of Fall
Preparing for More Surgery
This is Wrong….
-
Gift Ideas for the Spoonie in Your Life
Getting the perfect gift for anyone is difficult. I’ve been told that since getting sick, I’m more difficult to buy for. I don’t believe that to be true but I suppose I’m not usually buying gifts for myself. Often, the things that us spoonies want is not something that can be bought. It’s always best to get a gift that speaks to someone’s soul. Here are some great gift options for the spoonie in your life. Oil Diffuser and Essential Oils I love my oil diffuser. I often use it at night with some relaxation oils but it’s a great option for anyone who isn’t sensitive to smells. This is…
-
How To Recharge
Recharging is something that I do often. Unlike relaxing, recharging is something that is energizing to me. If I have several doctors appointments in one day, or a long to-do list, recharging is a way I stay motivated and get it done. There are tons of ways to recharge. Everyone is different but here are some of my favorite ways to recharge throughout the day. Listen to Showtunes When I need something to pick up my spirit, I turn on showtunes. Unlike my normal playlist, these are upbeat songs from shows that make me dance and sing. Although, let’s be honest, I’m usually singing in my car. My favorite songs…
