It’s been a long week. Therapy involves lots and lots of deep breathing while being hooked up to sensors that monitor muscle tension, heart rate, and temperature in extremities. The goal is to train the body to regulate these responses which are normally done unconsciously by the autonomic nervous system. Even though all my treatment thus far has been done with me in a reclining position, it’s EXHAUSTING. And my head is spinning from all the new supplements and products being added to my med schedule every day. My third day of treatment I was taken aback when I heard a young man screaming in frustration and then saw a teenage girl get taken out of the treatment center in her wheelchair while curled up in the fetal position sobbing. I understand now. It is hard and frustrating and tiring, especially when you feel like this is your last hope at achieving normalcy. I am doing surprisingly well with it, though. My biggest struggle at the moment is just exhaustion and my stomach acting up today. The pain is coming back, which makes me scared.
What really breaks my heart is seeing the young, sweet girls I met struggling. The 12 year old was hospitalized yesterday after being unable to eat or even drink water for over 24 hours. We suspect undiagnosed gastroparesis but she was unable to use an ng tube and will receive a picc line tomorrow. It is so unbelievably sad seeing a TWELVE year old struggling so much with POTS when she should be finishing sixth grade and just starting to get a slight idea of who she is. I really mean it when I say it breaks my heart, especially since now that she is hospitalized she can no longer continue with the treatment program. The seventeen year old girl is so sweet and caring and I see so much of my story in hers. She got sick very suddenly at fifteen, like myself, and had to quit gymnastics (I had to stop dancing). I absolutely HATE that she is going through what I went through. She is currently wheelchair bound and unable to so much as go to dinner. Seeing her faint because we’ve been sitting up too long for a two hour meeting makes me so sad. This is not what a seventeen year old girl should be dealing with. This is not what anyone should be dealing with. I really hope this center helps us both, along with all the other incredible POTS patients I’ve met. It still blows my mind to be in a place where people actually understand POTS and to be surrounded with other patients who can relate to the pain of trying to wash your hair without fainting. It’s both joyful and painful.