Working with Chronic Illness | Life with POTS

I work at a grocery store as a clerk. It is a very active job. I am constantly moving, lifting, and bending which can be difficult for someone with POTS. Here are my top tips for working with a chronic illness:

Get Up Early

I like to wake up early when I have work. This mades it so I have plenty of time to rest in between doing things. I usually start work at 8 am but I wake up at 6. This also gives me the ability to take my morning slowly. I have to take my beta blocker with food so I need to make and eat breakfast before work. I get nauseous in the morning usually due to my POTS so I tend to eat slowly and waking up early gives me plenty of time to take my time.

Wear Compression Socks

When I stand for long periods of time, blood pools into my legs and feet. Compression socks help with that by constricting blood flow to those areas. I especially liked to wear them when I had 8 hour work shifts.

Water + Electrolytes

I recommend bringing water with you to work and adding in electrolytes. I like Liquid IV and Propel packets. I find them more convenient. If possible, bring your water bottle with you and keep it in the backroom or at your desk.

Tell Your Manager

I didn’t tell my manager until the job became too difficult for me to handle. I recommend telling them at the start after you are hired though. I have a couple accommodations because I talked to my manager. First, I have shorter shifts. I only work in 4 hour shifts in a day and only work usually 12 to 16 hours a week.

Wear A Heart Rate Tracker

Wearing a heart rate monitor can be helpful to keep track of how fast your heart is beating. It also tells me when I need to sit down or rest. Usually when my heart rate on my Fitbit goes above 130 and stays there I will go have my break.

Ask Questions

If you are asked to do something, I recommend asking questions when you don’t understand something because of brain fog or the like. When I am learning a new skill I usually ask as many questions as I can think of. I also ask my manager to repeat something if I don’t get it the first time they say what they want me to do.

My Social (Pragmatic) Communication Disorder Diagnosis as an Adult | The Diagnostic Process

I had been waiting to get an autism assessment for a long while. Years even. And finally when my insurance changed I was able to put on the waitlist for one. I waited for about 4 months on that waitlist until I got a call to schedule my first appointment.

Before my assessment, I prepared a list of all the reasons I thought I could be autistic. I included certain traits I have and stories that represent those traits. For example, I have difficulty socializing and have sensory issues.

My assessment was broken down into three parts. The first part was an hour long discussion of my traits and background. Why I was seeking a diagnosis basically. Because of the pandemic, my appointment was virtual. My mom was with me to speak about my childhood and to tell things about me that I do not notice.

I then made a second appointment for six hours of additional testing. I had to wait about another month until this appointment. The testing involved puzzles, doing math problems, repeating back numbers, interpreting ink blobs, and answering true/false questions. I ended up finishing the testing in about 5 hours instead of the set six. The assessors needed thirty days to analyze the results of my testing so my next appointment was about a month later.

The third part was the results and next steps. I received a report of the results of my testing as well. During this appointment I was diagnosed with Social (pragmatic) communication disorder (SCD) instead of an Autism Spectrum Disorder (ASD). I was told that SCD was similar to ASD but didn’t involve repetitive fixed interests or behaviors. I was also told that if Aspergers was still a diagnosis I would have been diagnosed with that instead of SCD.

Social Pragmatic Communication Disorder is characterized by difficulties in communication for social purposes. It can impair both verbal and non-verbal communication. Non-verbal communication involves things like eye contact, gestures, and body language. People with SCD often have average intelligence and don’t usually have problems with the actual mechanics of speech.

To learn more about SCD, you can click here to view the ASHA website.

At first, I was a little taken back. I was expecting one thing and it turned out different. After a few days of thinking, I realized that this diagnosis does fit me and I have to learn how to accept it moving forward. I plan on finding a therapist who specializes in communication disorders and can help me with both that and in learning how to, I guess, treat the condition. There isn’t necessarily a cure but there are ways in which I can learn to cope better with the symptoms.

While researching this new diagnosis I realized that I couldn’t find many personal experiences online. And that is the first thing I wanted. To not feel alone and to relate to other with this same condition. So I want to write more about it so hopefully when others look it up, they will find a personal experience that maybe they can relate to. Social Pragmatic Communication Disorder is a relatively new diagnosis so I would like to raise some awareness on it as well.

If you have this condition or know someone with it, I would love to hear from you!

Dysautonomia Awareness | A Day in the Life with POTS

POTS stands for Postural Orthostatic Tachycardia Syndrome. It is a fairly common condition although it can go undiagnosed in a person for a long time. It took me 5 years to have a Tilt Table Test, which is the standard test to diagnose POTS. The umbrella term that POTS is under is called Dysautonomia. There are many different types of Dysautonomia. Here is an average day in my life with POTS:

I wake up between 6 and 7 am every morning. I need to slowly sit up before I can stand up when getting out of bed due to my POTS. I feed my dogs which can be difficult because I need to bend over to put their bowls down, which increases my heart rate and sometimes also my blood pressure. I then make coffee and prepare a breakfast. My beta blocker, which I take for my POTS, needs to be taken with food. Although, sometimes eating or the idea of eating will make me nauseous. This is also due to my POTS.

After I finish with my breakfast and watching the news, I go back to sleep on the couch if I am not working that day. When I wake up, I usually will do so slowly and watch YouTube on my phone for a while. This is then when I will get ready for the day. I usually shower. Somedays I need to use my shower stool in order to not get really dizzy from standing for too long. Then, I’ll brush my teeth and change my clothes.

I need to keep hydrated all day long so I usually will carry around my water bottle with me. Some days I will add in a Propel electrolyte drink packet into my water or Liquid IV. Adding in extra salt and extra water can increase blood volume, which can be low in people with POTS.

After I rest from getting ready, I will try and do some exercise or my physical reconditioning. This is usually a walk around my neighborhood or yoga and lifting light weights. I do need to be careful because my heart rate can go too high if I exercise too intensely. I’ve done yoga from a lying down position and had my heart rate go into the 140s before.

At dinner time, I take more beta blockers and watch TV with my family. I’ll feed my dogs again around this time as well. I then go to sleep around 8-9 pm. I need a lot of sleep to help combat my fatigue that is due to my POTS.

This was an average day in my life with POTS. POTS can vary from person to person. I would personally say I have a moderate level of POTS because it impacts my daily life. I am able to function although with some difficulty.

My Experience with Autonomic Testing | Dysautonomia Awareness

I had this testing done during July of 2020 during the pandemic. Both I and the doctor and nurse performing the tests wore masks.

Autonomic testing can be done to see how a person’s autonomic nervous system is functioning. When a person has dysfunction of the autonomic systems, it is, from my understanding, called dysautonomia. There are many different forms of dysautonomia. Here’s my experience with autonomic testing:

After I went into the exam room, the nurse asked me to take off my shoes and my right sock. I then sat on a table and ECG electrodes were put on my back. After the electrodes were placed I was instructed to lay down flat on my back.

During the entirety of the tests, my blood pressure, breathing, and heart rate were monitored. I had a breathing belt on around my waist for all the tests too.

A blood pressure cuff was put on my left arm and a pulse reader was put on my left middle finger.

First, I had a sweat test done. More electrodes were placed on me. One on my right foot, two on my right leg, and one on my right arm. The nurse put on bands around each electrode site and tightened them (the band was similar to the one put around my arm when I get blood work done). Then the nurse put liquid solution filled electrodes near the other sites. Once the electrodes were turned on, I felt a stinging, vibration feeling at each site. It wasn’t too uncomfortable. The stinging lasted for about 5 minutes and after it stopped the solution filled electrodes stayed on for 10 more minutes.

The nurse put heat packs under both of my hands for the next portions of the test.

Next was the breathing tests. There was a screen with an arrow on it and I had to breath deeply following the arrow up (inhale) and down (exhale). Then I had to take a deep breath in and “bear down” while holding my breath for 15 seconds.

For the tilt table part of the test, my right arm was put out to my side and the nurse put on another blood pressure cuff and heart rate reader. I was then strapped to the table and was put upright. I believe I “stood” for about 10 minutes. The blood pressure cuff went off a few times. And the heart rate readers continuously monitored my heart rate. This was the hardest part of the testing for me. It was pretty uncomfortable and I began feeling many of my symptoms when I was upright. After the 10 minutes were over, I was laid back down and unhooked from all the straps and monitors. I then slowly sat up and put my sock and shoes back on.

I was then instructed to go to the next room where the doctor discussed brief results of the testing and next steps. Overall, the testing lasted about an hour.

Please know that your experience with autonomic testing may be different than mine.

15 Facts About Me | I Am More Than Chronic/Mental Illness

I know I write a lot about chronic illness and mental illness here on my blog but I have more to my life outside of those illnesses as well. I wanted to show that all though these illnesses take over a large part of my life and impact me everyday, they are not the only things that define me. Here are 15 facts about me that are not illness related:

  1. I love animals! I have 4 dogs at the moment. My brother and sister-in-law have 2 cats and my younger sister has a few geckos, a snake, and a frog.
  2. I really like drinking tea, especially in the winter. My favorite flavors include jasmine, lavender chamomile, and matcha green tea.
  3. I started writing short stories when I was in elementary school. I even won a contest for one about a lost dog named Spot.
  4. I am a plant mom. I have 4 succulents and one purple passion plant currently. I am looking for another plant to fill a big Sriracha branded bowl I have.
  5. Speaking of Sriracha, I love spicy food. I like to put hot sauce on literally everything.
  6. I am a big foodie. I love trying out new dishes and I have eaten cuisine from all over the world. My favorites include Mexican and Korean food.
  7. I am part Korean. My grandparents actually met in South Korea. I don’t know the language but I grew up with the food and some of the culture.
  8. I really enjoy listening to music. I like to find new songs and will listen to the ones I love on repeat.
  9. I collect Tsum Tsums. The phrase “Tsum Tsum” means “to stack” in Japanese. They are all Disney characters. I have mostly just plush versions but I have a few figurines too.
  10. I also collect things with owls on them. Owls are so cute. I have stuff from an owl pillow to owl measuring cups.
  11. I want to go into the medical field for my career. I have tentatively decided that I would like to become either a child life specialist or pediatric nurse.
  12. I like to do arts and crafts. I have a Cricut machine and like to draw stuff for it to cut out. I also like to paint with watercolors.
  13. If you couldn’t tell from the name and look of my site, my favorite color is purple.
  14. I like to bullet journal. I think it is fun to plan out my spreads and add stickers and different sticky notes in my journal.
  15. Yoga is my exercise form of choice. It can be really relaxing or energizing for me.

Those were 15 facts about me, more than my illnesses. I hope you learned something interesting about me. Let me know a fact about you too! I would love to hear it!