• My Experience

    Chronic Illness Grief and Being Chosen

    The other day I was struggling with chronic illness grief. It’s something I’ve dealt with since getting sick. Everyone goes through it when they get sick, it just comes with different labels. I was experiencing loss. Loss of freedom, loss of innocence, and loss of who I used to be. As we change over time, we will always experience emotions towards who we were before we grew. Whether they’re happy, sad, angry, or all of the above is completely unique to you. During this grief, I started thinking about how spontaneous I could be before. Not that spontaneity is really my thing but I used to be able to do…

  • My Opinions

    Pill Organizer Review

    I take medication multiple times a day. I’ve always used a small pill container to organize my morning and nightly medications. Overtime, my lifestyle has outgrown it. I take medication at three different times throughout the day. Setting out my nightly pills and morning pills at the same time worked for a while but posed challenges. Particularly when I go out, I have to put all my medications together in front of people. It’s cumbersome and time consuming. It also raises a lot of questions. During the day, I take my medication and sometimes forget whether I took it or not. I was on the hunt for a better solution.…

  • My Experience

    My Medication Philosophy

    Let me start off by saying, this is how I handle using medication. It is right for me and my body. I’m not suggesting that this is right for everyone or that it is a universal truth. I don’t want to offend or infer that others are overusing their medication. I don’t deal with chronic pain and cannot speak to that experience AT ALL. That is completely different from what I am talking about. This is what is right for me. My view on medication has changed over the years. It’s grown, as I have. When I was young, I didn’t handle discomfort well. I chose to take medication whenever…

  • My Experience

    Why I Prefer Female Physicians

    This past week I saw a GI doctor. I was hesitant to even go in because my symptoms don’t feel worth addressing. The last time I went to GI they simply said the issues I had would always be there. My nervous system problems would propel the issues forward and create a cycle. They gave me no treatment or guidance for symptom management. When I spoke with my allergist about the stomach issues I was having, he urged me to go in. Reluctantly, I agreed. My appointment got scheduled and I braced myself for the myriad of dismissals I was ready to receive. While I was waiting, I checked to…

  • Helpful Hints,  My Opinions

    My Experience at Mayo Clinic Rochester

    Everyone has an opinion of Mayo Clinic. Whether they’ve been accepted as a patient or denied, people usually have something to say about it. The reviews I heard before going were difficult to follow. They were all specific to doctors or an isolated experience. I wanted to shed light on my experience as a whole. I’ve been treated at Mayo Clinic for a year now. I’ve seen hundreds of doctors and been hospitalized multiple times. I’ve had good experiences and bad experiences. This is an overview of my experience at Mayo Clinic Rochester. The first doctor I saw at Mayo Clinic was less than thrilling. I had an anxious stomach…

  • My Experience

    I'm Getting My Wisdom Teeth Removed

    I’ve chosen to get my wisdom teeth removed. For me, this is a big decision. Any procedure can cause stress to my nervous system. This could increase my daily symptoms making it difficult for me to function. So why now? It’s very simple, they’ve finally become a problem for me. I was told two or three years ago they’d have to be removed. My mouth doesn’t have the space for four extra teeth. I blew it off at the time, thinking I didn’t have the time or it wasn’t worth the hassle. Now, it’s clear that they were right. As my teeth are growing in, it’s causing a lot of…

  • Helpful Hints,  My Experience

    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…

  • My Experience

    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…

  • My Experience

    I'm Getting A Dietitian

    In the past three years, my body has changed a lot. During the winter and spring of my senior year in high school, I started working out a ton. This was the first time in my life I had ever chosen to exercise and stuck with it regularly. The results were extremely pleasing to me both mentally and physically. My brain was clearer and my body started to drop a lot of fat. After leaving for my first year in Connecticut, I started focusing more on diet than exercise. With new friends, a new course load, and new experiences to be had, I didn’t take the time to exercise. This…

  • Helpful Hints

    How to Prepare for a Tilt Table Test

    If you have any form of Dysautonomia, the tilt table test is likely your worst nightmare. It’s minimally invasive but it’s not a fun experience. If you don’t know how to prepare for this test, consider this your how-to guide. I have had three of these tests in a year span. That is WAY too many but every new specialist wants their own confirmation. This is how to prepare: Stop Your Medication: I choose to stop my medication a week beforehand. Every lab has different rules on the exact number of days that you have to be off of medication. Check with your doctor to confirm but this is my…