Demystification

Upbeat

She wears a pink hospital gown and black face mask. — Amy strikes a hospital glam pose in radiology

I am at the end of a week that had six medical. Having a degenerative illness is a full-time job. I’m exhausted, but feeling upbeat.

My thoracic spine has more degeneration. I am in the midst of a gastritis/gastroparesis flare. I’m starting a new medication for postural orthostatic tachycardia syndrome, which is why I’m feeling upbeat. Though maybe I should say downbeat? The medication should help decrease my heart rate and increase my blood pressure.

Now I’m thinking of that movie Backbeat about The Beatles that starred Sheryl Lee.

Anyhow, my neurologist and cardiologist think that my “seizures” might actually be vasovagal syncope episodes that are being triggered by the postural orthostatic tachycardia syndrome. The new medication could help prevent those! This is very exciting news.

Now I’m going to relax by retreating to my island in Animal Crossing.

Cancer-free!

I’ve been cancer-free for six years now. I’m happy to share that my annual screening test results are back and that I am still cancer-free! Woo-hoo!

Sigh

My tendons are shot because of being hypermobile. My ankle gives out all the time and I lose my balance. Sometimes I fall. My right foot feels all crunched up and every step I take is painful.

My foot surgeon (named Dr. Martin 😂) left my hospital so I was supposed to see a different doctor in March. Dr. Martin had performed joint stabilization surgery on my left foot in 2015. The last time I saw her, we had discussed tendon reconstruction surgery on my right foot. I was still working full-time then and couldn’t afford time off.

Of course the appointment with the new surgeon was canceled and rescheduled and then canceled again and then scheduled with a nurse practitioner (NP). I tried to get an appointment scheduled with the doctor, but I was told that they didn’t have any openings.

My knee surgeon said it would be worthwhile to have the NP triage, but he was like, “You need to see the doctor.” So of course, I saw the NP (who is top notch, BTW) and she was like, “You need to see the doctor.”

SIGH. Going to the hospital is nerve-racking enough and now I feel like I wasted my time. The upside is that it was nice to see the NP (I’ve seen her for five years now) and she told me that she had been thinking of me because she had a couple of hypermobile patients. Having seen me today, she’s thinking of reaching out to them to talk to them about Ehlers-Danlos syndrome.

Tomorrow, I have my annual cancer screening (I had cervical cancer) with my new gynecologist, Dr. Johnson. My previous gynecologist, Dr. Dick, has retired. I kid you not. I think my doctors are using aliases. 😂

Sleep Deprivation

I can’t sleep. But that’s good because I’m having a sleep-deprived EEG in a few hours. I could sleep for up to four hours, but that’s not going to happen. I’m far too anxious about my first hospital visit since the pandemic started.

I’ve been anxious all weekend. In addition to being nervous about going somewhere where people have COVID-19, I’m on a course of steroids for an intractable migraine. The steroids make me more emotional and prone to “roid rage.” My partner has been very, very patient with me this past weekend!

Our cat, Candy, has also been wonderful. I swear that she knows when I need her to calm me. She’s the best unofficial emotional support cat! I’m so thankful for the two of them.

But I just want the EEG testing to be over. My new neurologist ordered it months ago. I started seeing him late last year and so far, I’ve been very impressed with him. He’s already treating my headaches and is taking over my seizure care from another neurologist. He wants to get a baseline EEG done.

This will be my third sleep-deprivation EEG. I’ve also had two ambulatory EEGs, multiple sleep study ones, and one multi-day in-patient video EEG. The most recent one was the in-patient testing, which was done in 2018. My EEGs all show that I have abnormal waves in the left temporal region of the brain. They have not captured a seizure on EEG, so the doctors cannot rule out epilepsy.

Since 2018, I’ve been on a high dose of Gabapentin and that has helped a great deal. I haven’t had a seizure-like spell since February, when I was very sick with the type A strain of the flu. I write “seizure-like” because it’s possible that what many have called seizures could actually be vasovagal events that look like a seizures. I do have vasovagal syncope and postural orthostatic tachycardia syndrome (POTS), so the vasovagal idea is intriguing.

I’m hopeful that this new neurologist can get to the bottom of my headaches. This current migraine has been with me since June 18. I’ve gotten some relief with the steroids and rizatriptan, but the high heat and humidity have really been doing me. Pandemic anxiety is not helping. Our president retweeting a video of a supporter shouting “white power” is not helping.

Fingers crossed that I don’t pick up anything while I’m at the hospital. The steroids compromise my immune system and I’m already asthmatic, so I’m one of those high-risk COVID people. It’s terrifying for me. I wish people would take coronavirus seriously. Please: wear a mask and when there’s a COVID-19 vaccine, please get it. I’m selfish and want to live.

Kindness

The following was written by a dear friend and has been reposted with their permission. I have added paragraph breaks and made a couple of spelling corrections, otherwise it is as they wrote it. I thank them for their candor, friendship, bravery, and letting me share their unique perspective.

I have been thinking of posting this for awhile. If we could all just stop, be kind, and know that others maybe going through things you have no idea about-we just might become better people ❤️

Many of you don’t know this but, when I was seven years old I had the chicken pox and developed Reye’s Syndrome. That time spent in the hospital I had very few visitors and everyone had to wear protective equipment. They didn’t know what I had at first. The few days I was there it was filled with terror and pain. Everyone that came into the room I could not see [their] faces. They were covered in plastic and paper to protect themselves and me. As a seven year old I did not understand this and figured if they were dressed that way I must be dying. I had no touch except painful testing and procedures.

Brains are wonderful things and I had most of this blocked from my memory until recently. I knew I had it, and could tell people I had it but most of it was hidden in my mind. That is until I had to see the doctor at the beginning of March due to virus symptoms. When I pulled in the drive and she came out in full gear- the first time I had been in contact with it since the age of seven, I had a panic attack. I couldn’t get out of my car and had tears running down my face. I did not speak of this to anyone because I felt silly that something that happened 40 years ago had such an effect on me. I got home cried in the bathroom and threw up.

That night the vivid, real dreams started. Like I said your mind is amazing. Things I had forgotten, smells, tastes the feeling of everything being done to me came back. I can remember my room, the machines- with amazing clarity. I woke up and have been afraid to sleep since. Seeing and wearing masks set off anxiety and usually at night, a vivid dream.

… I told everyone I was afraid I might get [it] and give it to my children. Which is true to some degree- I wouldn’t want anyone who I know to have to go through anything like I did. I know this disease is much worse. My biggest fear is I will have to relive that experience my brain had so nicely closed off in a nice neat box. It did it because I wouldn’t have to relive the torment. I can remember being scared I would die and then after a painful procedure wishing I could.

A seven year old wishing she could die because all she knew was pain and terror. So this is why I make masks, I have to do something because I will go insane. I remember that helpless child so vividly that it tears me up inside knowing that thousands of people are going through that.

I wish I could just play back one of my experiences I have to mothers with small children at protests. To all the people who don’t wear masks in public, then go home to children they love. I have to stop watching things like that.

I haven’t said anything of this to anyone because it all seems so pathetic to me. After all this time, my brain doing this to me. I have been lying to everyone saying I am ok and I’m not. I just can’t believe people would want to risk the lives of loved ones. Would want them to be alone and scared.

I sit here writing this with tears rolling down my cheeks in hopes someone might listen.

I know I am lucky. I have been told that many children died during the time I had it [Reye’s syndrome]. I have some issues from it -my hearing loss and some slight damage to connections between my brain and ears. I also have a number or neurological issues. I also apparently some trauma that I had buried deep. But I am still here!

This new disease is much more brutal. I am lucky though that I have a wonderful husband who does things for me I can no longer do. I don’t know how long this will last but I hope and pray that people don’t have to experience the fear myself and the fear my family had during that time so long ago. I keep busy trying to help in some small way. I work hard and stay up late in hopes I’ll be so tired I won’t dream. Maybe sharing this will help too, I don’t know.

Please be kind-Even if you think this is stupid just wear a mask. Please be compassionate- if some asks you to back up a little just do it. Please think of your loved ones-stay home and follow the guidelines in place to keep them safe. We are all in this together.

Some of us are really struggling and your kindness is key. Be the light in this dark scary time. Be the someone you want others to be. Again not sharing this for pity- not intended but to shed light on a similar experience. To show that we need to keep our most vulnerable safe so they never have to endure anything like this. No negative comments please. I wish you all love, light and good health.