October is dysautonomia month. I’ve let the majority of the month go by without posting anything because this month has been very hard for me medically, and emotionally too.
In September I went to meet with a new cardiologist. My mother had talked to his nurse and was assured he works with POTS and EDS patients and that he was the one to go to. We both went into the appointment optimistic, and we both ended up in tears.
He was kind, and I think he is probably a great doctor. But POTS is not his specialty, and as such he only sees POTS patients with very classical and/ or mild cases. Which is not me. He was very honest and told me that he was not comfortable seeing me. But he also said that I was the most complex case of POTS he’d seen. He said that what I had was severe and was going to be the rest of my life. He was saying it with the intentions of making it clear that I needed to find a specialist and someone who had a more complete understanding of dysautonomia. But to me all I heard was, you are broken. you are complexly and severely broken. you will be broken forever. and i don’t know how to help you.
But he did help, after coming up with a list of doctors, both local and not so local, and having me go through the list and tell him I was either rejected as a patient or they simply diagnose and don’t treat patients, he got out his cell phone and called his former co worker. He made sure his friend was comfortable seeing me, knowing my vitals and the meds I was currently on. AND he got me into see him the next week.
The appointment with this new doctor went really well. He is confident he can help, and is comfortable working with the doctors at Vanderbilt. He went through my entire medical history and decided to start me on steroids to help increase my blood volume. (I’m at about a 15% deficit) Although I wasn’t thrilled about the steroids and side effects that come with them, for the first time in a long time I was optimistic. I felt like I had a set of doctors that were competent, and almost more importantly, that cared. September ended on such a great note.
Then came October. My EDS has been progressing, which is to be expected. But my pain had been significantly worse and I decided to make an appointment with my PRM (physical medicine and rehabilitation doctor) to discuss pain management. I went into the appointment thinking that we’d talk about different brace options, or something along those lines. But after looking at my vitals, she was alarmed. That day in the office my bp was about 150/100. And looking at my most recent logs, just a couple days prior it had been 160/130.
She talked to me for about 30 minutes. She explained that I needed to prioritize my brain and then my heart. That my heart was obviously struggling, but that I was also really risking my brain. She explained that with those numbers I am an extreme stroke risk. Now I’ve known I’m somewhat of a stroke risk for a while. My friends and family all know what to look out for, and I always take my BP and look in a mirror before I drive. But it has always been it may happen. She sat in front of me and said it will happen. She told me that I needed to stop everything and go back to being on bed rest.
Here’s the thing. EDS does not agree with bed rest. I am in PT at least once a week and do some form of exercise every day to try and protect my joint. In times of inactivity, EDS progresses even faster. And she’s a PRM doctor so she knows this better than anyone, and she was honest in talking to me about it. She said my pain would worsen. She said i’d loose mobility. But she said it was my only option.
I walked out of the appointment and cried in my car for at least 30 minutes. I couldn’t do anything else. I just sat there and balled. I already feel so limited in everything and now this?
I got home and messaged the new cardio, and went to PT the next day just to talk to my physical therapist and get her opinion. She said of course I am at risk, but she thought I needed to talk to my cardio before making any decisions and that she didn’t think bed rest was necessarily the answer.
Three days of panic and heartache went by before my cardio was able to call and talk to me. And thankfully he agreed with my PT that bed rest is not the answer. My blood pressure is crazy, but right now at least once I recognize it’s high I can take a PRN med and lie down and it will correct itself. It’s not ideal, and sometimes I have a hard time telling when it is high, but I’m not constantly living in that danger zone. So for now I can stick with PT and my limited activity. It’s not ideal but it is something.
I then followed up with my PCP. She agreed with the cardio, but also signed a DMV form for me to get a handicap parking permit. I know this seems great. A lot of people have told me how exciting it is that I will always be able to get a great parking spot. But here’s the reality, my doctor just signed a piece of paper that legally says I am permanently disable, and that walking even the shortest of distances is difficult for me. At age 20, that is my reality.
I am attached to my BP monitor. I don’t go anywhere without it. My purse is filled with meds and barf bags. Every moment of my day is consumed by pain or fear. Dysautonomia is horrible. It effects so many people, yet is isn’t well know at all. It takes an patients an average of 7 doctors and 6 years to be diagnosed. 60% of patients are told it’s an anxiety and completely dismissed. This is why awareness is so important. Because those numbers are not ok.
I encourage everyone to learn about dysautonomia, but more importantly to learn that not all disabilities are visible. You never know what someone is struggling with. So be kind and compassionate whenever possible.