To round out Dysautonomia Awareness Month, Grace is back one more time to give us insight into her experience living with P.O.T.S., this time in the form of a Q&A. After working with Grace for about a year and a half, I thought I knew her pretty well. But, with the help of crowdsourced questions (thanks everyone!), there is always something new to discover! Grace was kind enough to spend the time to open up and share with us her thoughtful responses to our curiosities, both mundane and personal. We talk about everything from her diagnosis of P.O.T.S., her current daily struggles and successes, and where she sees herself and Dysautonomia as a whole down the road. Keep reading to hear from Grace herself!
Q: What were your first symptoms? What were you told you had before POTS?
A: My first symptoms were mainly abdominal: extreme pain, nausea, pain after eating, and more. (If you want to know more about my journey with P.O.T.S. check out my other posts, Meet Grace: P.O.T.S. Strong and Young, Wild, and Living with a Chronic Illness.) A few of the diagnoses I had thrown at me were stress, depression, anxiety, IBS, PCOS, food allergies, ovarian cysts, and many more.
Q: What advice would you have for the health care professionals you saw before getting diagnosed?
A: Be honest. If you don’t know what is causing my symptoms/issues please tell me. I rather hear that you don’t know what is wrong than just passing my symptoms off as me being stressed or anxious. Just because you can’t find an answer doesn’t mean there isn’t one out there.
Q: You got your diagnosis during high school and were sick even before that, but still managed to graduate on time with your class. What sort of accommodations did you need to make to be successful in school?
Going to school while having a chronic illness is very difficult, luckily my school was pretty good about working with my needs so I could graduate on time. I had a 504 throughout middle school and high school which made it easy to address my needs. (If your child has a chronic illness a 504 is definitely worth looking into whether online or public school.) My junior and senior year I actually was too sick to physically go to school full time so I went in for 2-3 classes a day and did the rest online. Some of my other accommodations included the ability to leave class if I needed the bathroom or nurse, having salty snacks in class, extended time on classwork if I was absent, and the most important of all my health related absences excused. But the most important factor I found was communication with not only administration but more importantly with my teachers.
DAY TO DAY
What are some daily changes you’ve had to make since having P.O.T.S.?
Fighting Dysautonomia comes with a lot of life changes some of my main ones being using a shower chair, wearing compression leggings almost daily, and carrying a salt shaker wherever I go. I also had to adjust to using and carry a feeding pump with me and learning to manage and live with feeding/IV tubes. I finally had to learn to adjust my schedule around to cater to my P.O.T.S. and make time for my treatments.
What are some things you struggle with that people might not think about?
One thing that is difficult for me is showering. I saw a quote once that stated “you don’t know what tired is until you have to nap after a shower” and it is true. I also rely on a shower chair to help me complete this easy task. Something else that most people might not think about is doing my hair. Although it might not seem like much, putting my hands above my head is very tiring so even the simple task of putting my hair in a ponytail can be difficult some days. At one point this summer I was too sick to even brush my hair some days so I decided to cut most of it off, and I must say so myself I think the pixie cut suits me 🙂 Something I don’t do everyday but I enjoyed doing was going to concerts and theater shows. While most people go without hesitation, I struggle with not only the time sitting up but the noise and lights as well.
Who is on your care team? How many specialists do you see? Do you have access to all the specialists you need?
I see a total of 3 specialists at the moment. This includes a cardiologist for all my P.O.T.S. needs and concerns, a gastroenterologist for all my gastro issues, and a neurologist who handles my migraines. Now, unlike some with P.O.T.S., I have limited access to these doctors because they are located 8 hours away which makes treatment difficult at times. Since my specialists are so far away I see a handful of other doctors locally who help with my hands on care. My local team consists of an internal medicine doctor who handles my general care and helps out when I am not able to see my specialists. I also have a general surgeon on my team who I have to see more often than I would like, but in the past year he has helped put in a central line and feeding tubes. Even though doctors are a huge part of my care team, I couldn’t do it without the other side of my care team. This includes many nurses whether in the ER or the infusion center who help me in my times of need and the most important nurse on my care team is my mom, who not only handles my tube feedings and IVs but also helps with all my needs. I also work with Jacki as my physical therapist, who helps me in strength training and endurance. It truly does take a team to fight against P.O.T.S..
How has your social life had to change with P.O.T.S.? What kind of things do you do with your friends now?
My social life changed quite a bit when my P.O.T.S. became full blown because I was not able to do face to face contact as often with my friends, but luckily we live in this amazing time of technology. I am still able to keep up my relationships through many other forms of communication. When we do get together in person one of our favorite activities to do together is cook. Since I no longer have the energy to cook a full meal by myself , we all cook it together, though I have to hold back a little on the salt 🙂 But we aren’t just limited to the kitchen. We still go out every once in a while for an adventure and I am blessed with amazing friends who push me throughout the day.
How do you think P.O.T.S. has affected your romantic/non romantic relationships overall?
P.O.T.S. has definitely changed my relationships in different ways. I think some of my friendships have been weakened by it while others have been strengthened. On the romantic side I think having P.O.T.S. and being in a wheelchair weeds out all the bad ones 🙂
What are your hobbies?
My hobbies change quite a bit depending on my symptoms. Right now I enjoy spending time reading, learning to play the ukulele, sewing, and organizing.
What do you wish strangers who you come across could know about you?
I am a person, just like you. I never knew how many reactions and stares people in wheelchairs got until I found myself in one. I am living my daily life just like you, I just happen to be doing it on wheels.
Do you prefer strangers ask why you are in a wheelchair or leave you alone? If they do talk to you, how do you prefer to be approached?
If you are curious, ask me! I personally don’t mind people asking me, because with an invisible illness it is difficult to tell and it’s a great way for me to spread awareness. However what I don’t appreciate is staring or inspecting my body head to toe to figure out what is wrong with me. Even though I am in a wheelchair I still have eyes and feelings so please keep this in mind.
When being approached I don’t mind the simple “Can I ask why you are in a wheelchair?” What I don’t like is after I explain then being approached with is a list of your problems (yes this really happens) or your advice on what will “cure” me especially if you have never heard P.O.T.S.. The only time I really want your medical advice is if you have a PhD 🙂 I am being kind taking the time to explain what my ilg able to go out and do activities or spend a large part of the day with my friends.
What are your current goals?
Right now my goal is to be able to walk again on my own. I am also currently working towards an exercise regimen call The Levine Protocol which I hope to be fully active in by next year.
What careers are you considering and why?
I am considering occupational therapy or social work/counseling. I love helping others and with either one I can not only help people better themselves but also get back to thriving at life. I also think it is something I can do while still accommodating my Dysautonomia.
What makes you most nervous about moving away from home?
Probably the possibility of a medical emergency/ crisis happening, but when looking at colleges and locations I chose to go just several hours away. So if I do need help or something happens my parents are only a days drive away.
What makes you most excited about moving away from home?
Definitely the weather. My P.O.T.S. is pretty sensitive to weather changes such as rain, snow and cold temperatures, so Colorado isn’t ideal. I have decided to go to Arizona for college so I am hoping the warmer weather and lower elevation will help improve my symptoms.
Does having P.O.T.S. affect your ability to have children?
Yes and no. Although P.O.T.S. doesn’t directly affect your ability to have children, many women experience a worsening in symptoms when becoming pregnant. This is due to the imbalance of hormones which many think are directly linked to P.O.T.S.. I personally have made the decision not to have children, for many reasons including the worsening of symptoms and also Dysautonomia can be hereditary so I don’t want to risk passing it on to my children. Instead, I would like to foster children and maybe even adopt.
Where do you see yourself in 5 years? 10 years?
I can’t say for sure where I will be 5 to 10 years down the road, but I hope to be either starting grad school or my career and enjoying the beaches and warmth of the south. On the health side I hope my P.O.T.S. is as managed as it can be and I am thriving as much as possible with a chronic illness.
What do you hope for P.O.T.S. and Dysautonomia in the future?
Like anyone with Dysautonomia I hope for a cure one day. Since P.O.T.S. has only been a diagnosis in younger people since the 1990’s I am very hopeful that more research will be conducted and lead to better management in my lifetime.
Huge thanks again to Grace for her honesty and drive to bring increased awareness to Dysautonomia! I think I can speak for not only myself but for your huge crowd of cheerleaders in the world when I say we too hope for a cure for Dysautonomia and for you to personally continue to succeed and thrive in life, although I think you already are!!