• 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…

  • 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

    Dealing With OCD Spikes

    My OCD has been calm lately. I knock on wood when I say that. Really, how well I manage my OCD is completely dependent on me. That’s not to say that I don’t have random spikes of anxiety. Some days I feel more anxious than others. Some days I see a million triggers, other days I see none. Some days, I automatically start compulsions and other days I don’t. The other day, my therapist wanted me to do research on a topic. I started to get anxious about this rather quickly. I didn’t know why she wanted me to research this. I started having a lot of automatic thoughts, “Does…

  • 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…

  • My Experience

    I Still Get Nervous…

    Let me start off by saying, bringing Crush places, in general, doesn’t make me nervous. It makes me feel safe. He provides a lot of mitigation for my symptoms. He also helps take care of me when those symptoms are too much. I had a situation come up last week that made me question my own stigma. I needed to go car shopping. Out of respect for the dealers, I chose not to bring Crush. Although it is legal for Crush to be with me, I know how annoying it is to clean dog hair out of cars. Since Crush didn’t go with me to shop, I felt awkward bringing…

  • My Experience

    A Long Road That Ends With Surgery

    I’m facing another surgery. This seems insane to me since I’ve already had two in the past six months. The reality is, my doctors have run out of options. I have struggled with urinary incontinence for eight months. It’s something I don’t talk about often because frankly, it’s difficult to admit. Such a basic human function is not working in my body. It’s not as simple as that. I don’t have a sense of my bladder. I don’t know when it’s empty or full. The only indication I have that my bladder is full is pelvic pressure which isn’t always there either. This is a complicated and confusing problem. This…

  • My Experience

    I Have Hope

    It feels like the last few months have flown by. So much has happened and not just in my life. The world is changing before our very eyes. This is the longest period of time my health has been “stable” in the past two years. I say “stable” because a lot is still going on. I am celebrating six months of not being hospitalized. It’s a weird party to throw and there’s no balloon or card that celebrates that event but I’m excited. I went through this same type of transitional stage last year around this time. Suddenly I’m going from reacting to being. When some of these health threats…