Living Life with Chronic Illness – Under Construction
While the Infectious Disease doctor didn't have any "ah-ha" moments and definitely hadn't looked over my files ahead of time (her staff's fault for scheduling me as a patient with an acute need, not her fault), she did order a test I haven't had before called a Gallium Scan. Here is how things proceeded... Tuesday... Continue Reading →
If you've been reading my blog, you know I have been to both Mayo Clinic (Minnesota) and The POTS Treatment Center for help managing POTS. Most of my posts touch on all of the positives of each place. While I mentioned my personal struggles with getting through each program, I didn't really mention what I... Continue Reading →
Patience: the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset Proactive: creating or controlling a situation by causing something to happen rather than responding to it after it has happened I am a proactive person and always have been. I don't wait around for the world to magically make... Continue Reading →
To find out if it a patient has Hyperadrenergic POTS, specialized doctors typically order an endocrine test called a Catecholamine Blood Test. I had my test performed at Mayo Clinic's Autonomic Clinic in Rochester, Minnesota. Want proof? Here is a glamor shot taken just prior to the test: Okay, time to get serious! The Catecholamine... Continue Reading →
This blog wouldn't exist if I hadn't gone to Mayo Clinic's Autonomic Clinic and been lucky enough to have a lot of people who wanted to stay up to date. While I covered what it is like to go through the clinic, there are some basic (and important) questions I have come to realize I... Continue Reading →
Yesterday for my birthday (thanks for all the birthday wishes!) I cheated on my food intolerance diet and treated myself to Chinese. I took these pictures to document the effects because I know some people think I'd feel better if I just ate "normally". I'm positive any food that makes my stomach go from flat... Continue Reading →
What are you looking at? You are looking at my daily breakfast (or pre-breakfast I suppose although I cannot eat for an hour or two after drinking all of this). I drink all of this first thing in the morning on my good days. On the bad days, I add 12 ounces of tomato juice... Continue Reading →
Most people with POTS suffer from venous pooling, AKA blood pooling in their legs. It is painful! Imagine yourself jamming items into a bag. The bag stretches and stretches, and it gets heavier and heavier. In the case of venous pooling it is a similar situation. More blood is pooling in my legs than they... Continue Reading →
It has been 14 weeks since I left Mayo Clinic. This morning I called Mayo Clinic because it had been nearly a month since I called asking if Dr. Fealey had any additional input. His secretary seemed horrified I had waited so long and told me Dr. Fealey would personally call me. I was so... Continue Reading →
I'm alive! The picture above is from when I was waiting for my neurologist appointment Friday and my evidence of why I couldn't let everyone know how my day had gone. At this point, I had been up about 27 hours because Thursday night I didn't sleep a minute. For some reason, the Ambien I... Continue Reading →
