It has been a year since I was promised to have a better quality of life with IV fluids infusions. Still, nothing has been done. Yes, I understand COVID-19 has taken over every aspect of healthcare, and people who are requiring treatments at hospitals are suffering due to decreased capacities and hours, staffing shortages, and sometimes departments and outpatient services and clinics being completely shut down. The last time I talked to my doctor, she said she was going to order fluids through ambulatory daycare, which has at least a 6-month wait list, but she also said she doesn’t know how to ..read more

I don’t have pets, but our friend is very generous and lets her dog stay with us every so often. I usually feel emotionally and sometimes physically better. I feel good taking him for a walk, even if I can only manage a short walk sometimes, I feel more accomplished for the day – like “Wow! I thoroughly enjoyed that walk! I took time out of my crappy day to make a dog and me happy and got some exercise!” Petting and grooming him also makes us and the dog happy. Today, we made some frozen yogurt dog treats for our friend’s dog, which he really enjoyed (at least, I’d like to think). I made some ..read more

On a good day, I pretty much stay home unless I have to go out for appointments. For some chronic illness sufferers, this is often the case. Some of us practice social distancing on a regular basis due to the limitations of our illness(es). At this time, during the COVID-19 pandemic, it is even more important for everyone to practice social distancing to avoid the spread of the virus. Let’s take a minute to think about our most vulnerable population. Do you have grandparents? Do you have family members who suffer from chronic conditions? Do you have young children in your life? If these people ..read more

My body is not in complete “freak out” mode for the last 2 days. I’m so thankful for that. I have been able to eat a bit more than I can normally eat despite the GP, but I still have the pain under my ribs in the right side after eating. I had a CT scan on Thursday, hopefully that will shed some light on this situation. If it’s my gallbladder, which my doctors and I both think is the highest possibility that is causing this pain, then I hope it can be seen and diagnosed with this scan, and then we can move on to treatment options. The nice weather helps. And I got to spend some time with m ..read more

I have always wanted to become a nurse, ever since I was little. My parents would let me watch all the medical dramas and shows I wanted. Growing up, most of these were Chinese medical dramas. In reality, being a nurse is not as glamorous as often portrayed on TV. I’ve been a patient many times in many different hospitals since my teenage years. I suffered from an eating disorder and depression. I attempted suicide many times. One of those times, I nearly succeeded. I was admitted to the ICU for a few days. After this ordeal, all hell broke loose. I finally told my parents, doctors, nurses ..read more

I’ve been feeling pretty lousy for the past week. I have restarted ivabradine, a medication that I have taken before, but had to discontinue 6 months ago due to intolerable side effects. My doctor lowered the dosage this time to see if I can tolerate it. I guess the answer is no. I’ve been getting constant headaches and am even more dizzy than normal. I’m also unable to take any more than my usual sustained release dose of pyridostigmine, which my doctor wanted me to try. I am scheduled to have an abdominal and pelvic CT with IV contrast tomorrow. And to flush the contrast out of my system ..read more

After many years of being diagnosed with POTS, I finally got a tilt table test done to confirm the diagnosis and to identify the subtype. Along with blood work and urine tests, my dysautonomia specialist diagnosed me with Neuropathic POTS with hypovolemia. I also have orthostatic hypotension, which explains all the blackouts, fainting and falls I’ve been having. I’m still waiting for the government to approve a skin biopsy to find out if I have small fibre neuropathy and a specific autoantibody biomarker blood test to find out if I have the autoimmune type of dysautonomia, which is treated dif ..read more

When someone asks me “How are you?”, I usually default to “I’m fine” or “I’m OK”. I’ve gotten used to just putting on a smile and hiding my pain. When I do open up and tell my story, some people say “Well, you look fine” or “You don’t look sick” or “It’ll get better”. That’s when I shrug my shoulder, smile and walk away to continue my day. People usually mean well, but these are often the reasons why I shut down and stop talking. I may look fine on the outside, but no one knows what’s going on inside my body or mind. This proves to be true.Some disabilities are invisible. Many chronic illne ..read more