I feel I owe you all a follow up after my last few posts. After having a difficult time for a few weeks, I finally started to feel a little better this week (assuming 2.5 day migraines don’t count). My mom returns tomorrow for her clinical drug test and will be here all next week, so the timing is perfect. I seem to have established a regular pattern where I push through my mom’s visit, feel awful for a while afterward, and start to feel better right as she comes to town. Wash, rinse, repeat.
As long as I can take care of her when she’s here and get her to her appointments, I don’t care how I feel the rest of the time. I thought I would share what I have changed, in case it’s helpful for someone else. As always, never start or stop any course of treatment without talking to your doctor first.
- I doubled my beta blocker. I have been very resistant to increasing any medication. I still hold out long-term hopes that one day I will be medication-free, and increasing the BB is a big step in the wrong direction. I’ll worry about that once this is all over. Right now I’m focusing on the short term.
- I started taking a multivitamin, iron and magnesium regularly.
One of my frustrations with the low-histamine diet is that it eliminates certain foods that provide the largest quantities of specific vitamins and minerals. Tomato sauce, spinach, bananas, oranges, and swiss chard are all on the list of foods to avoid, and yet they are all high in potassium. I recently begun drinking coconut water regularly. It tastes awful, but it’s very high in potassium.
- I have ceased formal exercise (like going to the gym or riding my stationary bicycle), but…
- I play with my dog more. It’s good exercise, because we chase each other and go on short walks. No matter how bad of a day I had, he always makes me smile, helps lower my POTS-related adrenaline rushes, and brings things in perspective.
- I started a meditation journal where at the end of each day, I write down something I’m grateful for. It doesn’t have to be something deep – in fact it’s usually not. For example, today I’m grateful for the twin turbo engine in my car. Because, man, is that thing fast. Again, it helps me focus on something besides my health and watching my mom decline.
- Regular naps help me catch up on some of the sleep I’m missing at night.
My sole goal in life right now is to live my life such that when she passes away, I won’t have any regrets about whether I could have done more for my mom. Everything in my life right now is centered around that one goal.
During this visit, my mom will be offered the chance to participate in an extension of the drug study. If she declines, the study will end in 2 months. If she accepts, we will be on this rollercoaster for another 12 months. It will be a difficult year, and I’ll need all the help I can get. If you have any super secret “feel good quick POTS remedies”, please pass them on 🙂
“Attention is the first and final act of love, and the ultimate dwindling resource in the human arrangement isn’t cheap oil or potable water or even common sense, but mercy.” – Steve Almond
Smell ya later.