About four months in, I felt like a shell of myself. I finally posted on the Facebook forum for vertigo. I listed all my symptoms, asking if anyone else shared similar ones. Two girls commented that it sounded very similar to what they experienced when they first started developing a condition called “POTS”. I looked it up on the internet (I know, I know). The main symptom was a high pulse rate and low blood pressure. Specifically, a pulse rate that goes up 30 beats or more when standing. My blood pressure has always been low and it has never been a concern, so at first I wasn’t that worried. As I read more symptoms, I started freaking out. I felt like they were describing every symptom I have had since I was a teenager. I’ve worn multiple heart monitors throughout my life because I get something called, PVC’s. From what I understand, it’s a skipped beat from stress or caffeine. Lots of people get them, but not everyone feels them. I do. These are also very common with people who have POTS. Other symptoms included: lightheadedness in the shower or heat, unable to tolerate large meals, bowel issues, and dizziness. Although they do not know the cause, it usually develops after or during pregnancy, after a traumatic event, severe blood loss or surgery. Ok, so that terrified me! Every one of these things happened to me just months before this all started. These people usually go undiagnosed or misdiagnosed because its a new condition that doctors are just beginning to understand. No cure, but fluids and a high salt diet help most. Of course, I knew I would be the 20% that were completely bed ridden.
At this point, I knew my doctor already felt I was crazy and I was starting to wonder if I agreed with her. So, when they asked if I could see the physicians assistant instead, I was more than happy to. I didn’t tell her about my google diagnosis. No need to show all my crazy cards right up front. Plus, the last time she had seen me I was in her office with the flu and a heart rate of 200, which landed me in the hospital, and a miscarriage. I didn’t want her thinking I was “depressed”. They checked my heart rate like they always do and I asked if I could stand. It went from 80 to 140! I knew then, I did in fact have this condition. I said nothing though. I didn’t even tell her it went up. She asked for my reason of being there and I said I wanted to see a cardiologist. She practically held my hand when she said, “at what point do you stop seeing specialists?” I was taken back. I had only seen the ENT at this point. She then began to talk about all I have been through and being depressed is to be expected. I started crying out of frustration and said I’m depressed I can’t be left alone, that I don’t feel good, that I can’t take care of my child. I’m not depressed about anything else. I can’t afford all of these medical bills. Does she think I want to do all of this? I just want to feel normal. She prescribed me Zoloft, which I had no intention of ever taking and she gave me the referral I wanted. I asked how long to get in. She said it usually takes a while but there is a new cardiologist trying to build up a patient base and he is getting people in rather quickly. That is, if I didn’t mind he was younger. Not only did I not care, this made me excited. Someone who would be up on all of the new things. He may actually know what POTS is! She said, “you will like him, and he is from Fenton.”
A week later, I was feeling my absolute worst. I was crying all day. I was missing work. I had little to no contact with friends and family and rarely left my house. One day, my friend Shawn called me and I became hysterical. I sobbed on the phone, barely putting words together. She drove two hours to be with me and I told her everything I was going through. Every time she went to leave, I would start panicking and crying. She then called my friend Lauren who is a therapist and it ended up being an intervention of sorts. At this point, I was barely leaving the house, so neither of these girls knew what was happening in my life. I think they were surprised to see me in the condition I was in. It felt good to unload all of what was happening over the last few months on them. I knew how crazy I sounded. I knew I looked like a hypochondriac. They both were so understanding though. At this point Todd was home from work and explaining to them just how bad I had become. You know, just in case they didn’t pick up on it from my crying fits and completely disheveled appearance. When I told Lauren about my upcoming appointment with the cardiologist she had said, “what would be the best outcome of this appointment for you?” At this point I was spiraling and believing no doctors and no diagnosis. I knew what she was implying. I had said, “if he knows what POTS is, I will be happy. If he knows, and he either says I have this or I don’t , that will give me a lot of relief.” I wondered if I believed what I was telling her. Would I feel that way or was I convinced otherwise regardless of what he had to say?
The day I was scheduled to see the cardiologist, I was feeling better than I had in months. I even thought about canceling but I knew better. As I sat in the room, I thought to myself, “do I tell him about my “google diagnosis?” I thought “no”, just tell him how you have been feeling and see if he comes to it on his own. They took my vitals, which were the best they have ever been, of course. I then waited patiently to see the doctor. I would like to think I’m a good judge of character. I usually get a feel for someone right away. The doctor walked in and shook my hand, introducing himself. He exuded kindness and enthusiasm and I felt comfortable with him right away. I told him every symptom I had over the last few months, but left out my google search. I planned on giving the short version but realized quickly he wasn’t interrupting me or trying to cut off my rant… so I kept going. When I finished I almost laughed at myself. It’s funny how crazy you can sound when your explaining something out loud to someone else. He smiled and then told me I was not crazy at all but that I may be dehydrated. I guess constant “bathroom” visits can cause this along with lowering your potassium and a high heart rate is an indication of dehydration. He recognized my last name and knew all about Nash. He excitedly talked about what an amazing thing we have done in his honor. It was then that I felt I could really unleash my crazy. This man would never make me feel worse. I could tell I could be open with him without judgment. I wasn’t going to get any peace until I knew for sure. I grimaced and said, while looking at the floor, “that because of my high heart rate and low blood pressure, I was confident he was going to tell me I had some rare heart condition.” He then said, “like POTS?” I smiled and said yes, and I am so glad you know what it is. He laughed and said the full name that I am not even going to try and spell here. He replied confidently that he did not think I had this condition. I knew I had to drive it home and I shamefully said that I had googled it. He laughed and said, “Dr. Google”. I don’t know why I trusted him, but I did. Maybe it was the time that he spent with me or that no matter how much crazy I was sharing with him, he always seemed to listen without judgement. Or it could have been the overwhelming feeling that Nash was with me in that room that day…He scheduled a follow up appointment in a couple of weeks and I was on my way.
Over the next couple days I cried every second. Todd could not leave the house. I was afraid to walk, run, climb stairs. I was so dizzy I was running into walls, and I was ridiculously thin. I remember at my lowest telling Todd, “maybe it would be better if I wasn’t here. This is not the mother I want Crue to remember.” Todd had finally had enough and took me to the doctors himself. He said “you have got to do something.” She looked at Todd and back at me, crying as usual. She then said, “I think you should take her to U of M, the psych ER.” I was so exhausted, so frustrated, so desperate, that I didn’t even put up a fight. That day would begin my week long stay on the psych ward. A week that would cause a great deal of soul searching and show just how devoted a husband can truly be.