To read parts 1 and 2 of Maxine’s dysautonomia journey, click here and here.
It was a complete scope of my upper gastro track and everything went well with the procedure. They looked around my stomach and took some biopsies. They said the results would be back in 3 or 4 days. He said that if this test doesn’t show anything, there was another test he wanted to do. That test involved eating specially dyed foods so doctors could watch as it’s processed and released from my stomach, which tests for a condition known as gastroparesis. He said I would need to have my cardiac monitor taken out for it, which my cardiologist had put in over two years prior.
The next test I endured was a plasma catecholamine test, which is a blood test to check for catecholamines. Catecholamines are hormones produced by your adrenal glands. The test involved getting an IV in my arm, having me rest for 30+ minutes, taking some blood, having me stand for 10 minutes, and taking some more blood.
Thirty minutes later, the people conducting the test were still trying to get the IV in. They tried my right elbow, and the needle wouldn’t thread. They tried my left wrist and had the same problem. I suggested to them a recommendation that my younger step-brother had given me about wrapping my arm in a hot towel for several minutes. They agreed to try. That helped, and they were able to find a very weak vein in my right wrist.
They took my BP, which was 92/58, hooked me up with a drip to keep the vein open, and left me alone in the dark room. I drifted in and out of sleep for 40 minutes until they returned. The nurse attempted to draw the blood and had some difficulties. She finally had to wrap a BP cuff around that arm and drop my hand over the side of the bed but did get the 6 vials she needed. She took my BP again and it was 90/51. She gave me an odd look and began to clear my IV. I’m not sure what happened, but the vein blew. Test over.
She said that they couldn’t finish the second part without the IV, so the doc would have to accept these results or reschedule the test. She sat the bed up and I got immediately dizzy. She didn’t seem surprised and gave me some juice while they unhooked everything. I was a little frustrated though. When I left, I must have been a sight since I was still a little wobbly and pale with both wrists wrapped like I had attempted suicide.
The last scheduled appointment was with the GI doctor. He went over the results of my upper GI with me and said I had chronic gastritis. This basically means the lining of my stomach is inflamed and they don’t know why. He said that we could do the next test which would entail me eating food laced with dye and them taking pictures of my stomach digesting it for 6 to 8 hours. This test would determine if I have delayed emptying of the stomach. I felt pretty good when we left, even though I didn’t get any more answers or help. But the GI said I could come back and see him anytime, and that made me feel great. He also said that I wasn’t crazy. He did suggest a few things for the IBS, which gave me a little hope.
In the coming weeks, I had to redo the plasma catecholamine test, endure another tilt table test, and go through more blood work. I also had a final meeting with Dr. Goodman. He confirmed that I wasn’t crazy and that I did indeed have postural orthostatic tachycardia. Unlike the first time, I didn’t laugh or smile.
This time I cried as I realized that there was no cure and very little hope.
He did offer a few things to make my illness more tolerable. Staying hydrated through drinking and IV fluids, increasing my salt intake to ten grams daily, resting as much as possible, and a few medications could help. He also recommended I see a neurologist locally.
It took some effort, but eventually, I found a wonderful neurologist, who knows very little about my POTS, but is willing to learn and work with me.
She’s sent me to further testing over the past few years. I’ve been confirmed with neuropathy and diagnosed with degenerative disc disease. She has been very helpful in getting me weekly IV treatments of saline to keep me hydrated. She also manages my pain medications. Thanks to her recommendation, I use a walker to keep me from falling as I work, and a wheelchair for bad days or activities that would push my body too far.
Unlike many patients with this illness, I don’t have the option of not working full time. So I’ve learned to adapt as much as I can. I’m a teacher and have learned to lean on tables and stools while teaching.
When writing on my board became too much, I learned to type and project it on a screen. I’ve learned that earplugs work wonders for fire drills, assemblies, and experiment days. I teach my students that we are all unique and we all have limitations, and it’s alright to have bad days and struggle. But I use my own experiences to show them that there are no excuses in life and giving up isn’t an option. I let them see my bad days and my good ones, in hope that it will not only help them be more accepting, but also more honest about their own struggles.
In addition to teaching, being a wife, raising the most wonderful young man on the planet, and trying to live the best life I can with a chronic illness, I’ve also recently begun a writing career.
I read an article early on in my education of POTS that emphasized finding things that make you happy is super important for your mental health. As a teen and young adult, I wrote stories to pass the time. On a bad day, I reached for a pad of paper and I started to write. I found that the distraction helped the pain and allowed me to feel less guilty about being down in bed. Over the years, writing has become a needed and important piece of my journey. It has given me the time to rest that is important and yet allowed me to not feel guilty about my bad days. Writing has also helped me process my struggles. I’ve found myself writing my symptoms into my stories, and even including dysautonomia into one of my book series. Those moments have not only helped and changed me, but I’d like to think that they will also bring awareness to these little-known conditions.
Can there really just one moment in someone’s life that changes their life forever? Sure– getting married, having my son, almost dying, those all changed my life. But each one of those has led up to the moment that I’m in now. I’m living with a chronic illness that has changed my life– not only for the bad, but for the good too. I’ve made some of the most supportive and amazing friends. I’ve also learned who to trust and just how loved I am. I’m teaching my son that life is precious and it can change in an instant. I’m also teaching him to be an understanding and compassionate man. I’d like to think I’m a better teacher for my struggles and can offer my students a view on life few have. I’m also now a well-published author with many more stories I’m not scared to take the time to write. But none of these things could have happened in just one single moment. Was there a moment that set all this in motion? Maybe. But it’s been a long journey to finally get the answers that have honestly changed everything about my life and world. I think for most of us, it’s all of the best and worst changes in our lives that come from more than one instance, and nothing– the good, bad, or ugly– should be taken for granted.
What are your thoughts on living with POTS (Dysautonomia)? Share your stories, thoughts, and hopes with the Patient Worthy community!
To learn more about dysautonomia, check out our partners, the Dysautonomia Advocacy Foundation!