"I Am. . .So Much More Than You See!"

Free- this is how I feel when I ride my adult tricycle around the neighborhood.  COVID-19 has been a tough and isolating time for everyone, When I came back to NJ in March at the height of the pandemic, the only way to get outside in the fresh air was to walk. At first, I could only make it a very short distance without having my legs get shaky and feeling like I was going to fall. Eventually, I was able to make it around the block but I still had to stop very frequently to rest and regain my energy. In short, it was exhausting. . . In July, my-parents surprised me with a three-wheel bike. The first time I rode the bike, it was a feeling I had never experienced before. . .freedom and exhilaration. I have a feeling this is how people feel when they drive for the first time  I may have started out a bit too confident when I was riding as I did flip the bike in August after going too fast and making a sharp turn. I think I am the only person in the world who could flip a three wheel bike!

Yesterday was Rare Disease Awareness Day and as a person living with Mitochondrial Disease this day made me reflect on what having a rare disease means. 1. Having a rare disease means taking close to 40 vitamins a day, all prescribed by my doctor, without truly knowing which ones work and which ones don't. 2. Having a rare disease means being lonely sometimes because the "family" of people who are rare like you don't live close by and only get together once a year at the national symposium. 3. Having a rare disease means meeting therapists and other medical professionals who may have never heard of a Mitochondrial Disorder. 4. Having a rare disease means educating people about your disability in terms of your strengths and limitations. 5. Having a rare disease means being uncertain about the future in terms of disease progression. 6. Having a rare disease means being positive and hopeful that one day there will be a cure. 7. Having a rare disease means

Imagine losing a dog who looked at you like you were the best thing since sliced bread and followed you everywhere. This is what happened to me today and I am absolutely devastated. I patiently waited for a service dog for three and a half years. In that time, we had a dog who was too hyper, a dog who was too short and then we got journey.. . Journey is the sweetest dog I have ever met but unfortunately he made it more difficult for me to walk.  He was way too distracted by other dogs, people and smells. He also did not listen to a word I said because well he thought he was Alpha dog. Unfortunately, with my lack of strength and his need to be in control it made for a dangerous match. However, for the three weeks I had my Journey he made me laugh and smile so much. I hope he makes his new owner as happy as he made me. Today he made the "Journey" to Pennsylvania to be with a Veteran who has PTSD and also needs help with her mobility. Having a service dog for a short

Have you ever been to the doctor and felt totally disrespected and bullied? Up until this week, my experiences with doctors have been fairly positive. I went to see my primary care doctor for my yearly physical and she was so rude to me throughout the appointment, I literally broke down in tears. I knew the doctor was going to be late because I had been there for my flu shot the week before and waited thirty minutes for her. Therefore,  I asked someone at the front desk to let me know when the doctor gets to the office, so I didn't have to sit in a gown and be cold for 30 minutes. The employee was very nice and told me there was a patient ahead of me, so she had no problem doing that. However, the front desk employee forgot to tell me and the doctor walked into the room, without knocking, to get something for another patient and questioned me about why I was not changed yet in a rude tone. I felt like a child who was in trouble for doing something wrong at school. Not to

This week is Mitochondrial Disease Awareness week. Even though the awareness week is only seven days, Mitochondrial Disease is something me and many others with this devastating disease think about and deal with on a daily basis. Every person with this disease is impacted differently but I want to paint a picture for you of what my life is like with Mito. Imagine walking outside and getting progressively more and more tired until you just have to sit down to rest in order to regain your energy. While this can be frustrating, I am lucky that it only takes about a 30 second rest to regain my energy.  Imagine having to look at the ground constantly for uneven surfaces because you know there can be tripping hazards and your vision is impaired so you have to be extra careful. This has become second nature for me and the people who I am with often will warn me of something coming up that I may not see.  Imagine answering the phone at work and the person on the other end c

For me, falling is like dropping in free fall and trying desperately to recover so I don't fall. While I often joke around that I am really good at falling, this past week I took three tumbles that showed me falling is still scary no matter how good you are at it. While a lot of my falls are unavoidable due to my vision and balance, a fall this weekend could have been avoided if a mail truck driver would have used common sense and followed ADA regulations about parking. I was walking out a different exit in my apartment building than I normally do and I did not see a step in front of me. There was a mail truck parked in front of the cutout where I would normally exit the curb. Therefore, I did not realize there was a curb in front of me until I was falling down it.  After I pointed this violation out to my Aunt, she went into a nearby store to tell them about the truck being there. They said to her that they are probably just delivering the mail. My aunt then told them ho