Below is a letter written for people newly diagnosed with postural orthostatic tachycardia syndrome (POTS). It’s also a great tool for loved ones who are interested in understanding life with an illness.
I know that things are scary right now. It is life-changing to be diagnosed with a chronic illness, and it takes a while to process the news. To be honest with you, I am still learning to accept my diagnosis. But there is always hope, and there is goodness to be found in even our darkest times.
My goal in writing this letter is to share what I’ve learned with you. I am not a medical expert, so please consult with your medical team before making any changes to your treatment. I am dividing up this letter by topic to make it easier to read in case you have “brain fog” or trouble concentrating.
My story: POTS can be triggered by a trauma or illness. I got the flu in January 2014. After that, I never really got better. I was able to return to work from mid-January til March (with a lot of sick days), but things got pretty bad for me. I worked at a residential treatment center for teenagers with mental illness. Most of the nursing staff could tell I was not myself. I lost 10 pounds in about a month, I was always exhausted, I had memory issues, my cognition/decision-making skills were impaired (“brain fog”), and I was very irritable. I craved salty foods all the time. I was also sick with one cold or another that whole time. One night, I was working, and I made a simple mistake that was out of character for me. My co-workers made me take a break. Once I got alone in a conference room, I started sobbing. I just broke down crying. I was overwhelmed and felt awful. I let my supervisor know that I couldn’t stay for the rest of my shift. She’s an RN, and she knew I was unwell, so she graciously let me go home. I was never able to return to work. It has been heart-wrenching for me. Weeks of sick leave turned into months, and then my short term disability was over. I was “let go” due to benefits running out. If I am well enough to work in the next few months, they said they would be willing to hire me back. Right now, I just don’t think that’s realistic for me.
I was (mostly) bed-bound for a few months. I was exhausted all the time and I could barely keep my eyes open. I couldn’t have very long conversations because I would run out of breath and experience chest pain when I spoke. All I was able to do was watch TV, eat, and sleep. I struggled to shower because standing and lifting my hands above my head was painful. I used an ice pack on my chest, but I couldn’t get the pain to go away. I didn’t know that a high heart rate was causing the chest pain because my doctors never looked closely at that part of my vitals. Once they saw my heart was anatomically healthy, they dismissed my chest pain.
I was informally diagnosed with POTS in April 2014. Before that, I had a terrible ER visit. I’ll spare you the details, but I was dismissed as overly anxious and I felt belittled by the staff that treated me. Thankfully, my nurse practitioner saw was determined to help. I went through a battery of tests, which took a good amount of time. I had a sleep study and a narcolepsy test done to see if I had a sleep disorder, but nothing but insomnia was found. I had a few chest x-rays, blood work, and more EKGs done. Finally she did a “poor man’s tilt table test” out of desperation. She took my vitals laying down for 3 minutes, then sitting for 3 minutes, then standing for 3 min. My heart rate went from 95 sitting to 150 standing, and my blood pressure was low. She referred me to a neurologist and he did a normal tilt table test to confirm the POTS. I became tachycardic very quickly after being moved upright. I actually had to end the test early because I was afraid I’d pass out. My neurologist also did an MRI of my head/spine and I had an event monitor for 30 days.
Doctors and communication: When my symptoms began, I had a family doctor who didn’t believe that I had anything unusual going on. I’d dealt with fatigue and anemia for years, but she just didn’t believe that a healthy-looking 20-something could be ill. I was shuffled around her practice, from doctor to doctor, since she was rarely available. I decided I needed to see someone else. I talked to a few friends about their doctors, and I started going to a local nurse practitioner.
It’s really important to find a medical provider that you trust. My NP has never doubted that I know my body better than anyone else. She listens to me and takes me seriously. She saw my rapid decline first-hand and she trusts that I will be honest with her. Before I visit with any medical professional, I make a list of my most troubling symptoms and my top concerns. I take the list with me since I tend to easily forget things. I have found that the more specific I can be, the better. I try to specify when certain symptoms began, if there’s anything that triggers them, the intensity, etc. I also keep a log of my blood pressure, temperature, heart rate, and what I was doing before I taking my vitals. At first, I took a reading every day. I varied the time of day and activity so that my doctors would have some variety. Now I take a reading every few days, or whenever I am symptomatic. I record all of it on a sheet in a binder.
After a few terrible Urgent Care
and ER visits, I have developed a system. I have “Medical Preferences and History” document saved on my computer that has all of my basic information to give to medical staff in case of emergency. It makes it much easier to have it on paper so that I don’t have to remember everything in a crisis. I also have an accordion folder that has separate sections for medical records, medical bills, insurance statements, work disability paper work, etc. I take the accordion folder with me to every appointment and I keep my “Medical Preferences” document in the front of the folder. I also have a keep a copy of a “Medical Professionals Guide to POTS” in the folder to give to medical staff unfamiliar with my condition. Here’s the website for helpful handouts: http://www.potsuk.org/download_pots_leaflets
Sodium and Fluids: I drink about 64oz of Gatorade or Nuun drinks a day, and I also drink about 36-40oz of water. That’s a total of about 100oz/day. I had an app on my phone to track my fluid intake until I got used to it. It’s a lot to drink, and I go to the bathroom a lot. I also take 2-4 Thermotabs a day. They are an over-the-counter sodium/potassium supplement. I order mine online. Taking the Thermotabs helps me get enough sodium without over-salting my food.
Driving: I don’t do a lot of driving these days. For a while, my neurologist limited my driving because I was dealing with feeling lightheaded and dizzy most of the time. I also deal with brain fog, which impairs my ability to make quick decisions. Right now, I drive short distances every once in a while. I make sure to plan ahead and hydrate a lot the day beforehand, and I don’t drive if I feel unsteady. I have to ask for help to get to and from a lot of my appointments. My goal for 2015 is to be able to drive 10-15 minutes on a regular basis.
I hope that I’ve been able to help you as you start the journey of living with POTS. Please let me know if you have any questions about managing this illness. I am always happy to share what I’ve learned to help other people.
(Just another POTS patient)
Healing has been on my mind this week. I’ve taken steps to make progress in my POTS treatment, but I’ve been reflecting mostly on emotional healing. Chronic illness wears down my soul, so I make an effort to build myself up as often as I can. Healing is a process, and it looks different for everyone. I have a big need for compassionate, grace-filled relationships because they are where I find the most healing. When I am isolated and alone, I find it much more difficult to face the difficulties that come with emotional healing.
This quote by Buddhist author Pema Chodron best explains the type of relationships I find most helpful in my healing process. These words ring true each time I read them.
Compassion is not a relationship between the healer and the wounded. It’s a relationship between equals. Only when we know our darkness well can we be present in the darkness of others. Compassion becomes real when we recognize our shared humanity.
I am grateful for all kinds of things, but today I am most grateful for the compassionate people in my life who help me heal. You see, I don’t need to be judged or summed up by someone else. I don’t need unsolicited advice or anecdotal evidence about why I should change. I suspect that you don’t need those things either. In fact, I am confident that you need compassion from wounded healers just as much as I do. We all need someone to come alongside us, someone who is willing to listen and relate.
My goal is to be a wounded healer– a person who acknowledges my own brokenness (past and present), who is willing to help other people along the way. For me, that means being a part of a community of women with chronic illness who are committed to encouraging one another. It means reaching out to people who are courageous enough to admit they need support as they face mental health issues. Most importantly, it means that I relate to the hurt and struggle of people around me. I try my best to respectfully help them in whatever way they need, and I don’t spend my time judging them. Being a wounded healer doesn’t mean that I don’t have boundaries, but it does mean that I focus more on kindness than I do on judgement.
So here’s a short list of the compassionate acts I’ve seen around me this week. They’ve encouraged me to keep working toward my own healing.
- Lottie Ryan’s festive style challenge brightened up my week. Dozens of chronically ill women from all over the globe took part in the 7 day event. We read uplifting posts that were related to each “style of the day”. The picture above is from first day, “Banish the Blues.” I wore my favorite blue earrings and a blue striped top. I also took time to be close to my cats in order to lift my mood. Throughout the week, I enjoyed feeling put-together even though I didn’t leave the house much. It boosted my confidence to wear “real clothes” every day.
- S and I see a lot of poverty in our community and we do our best to come alongside our neighbors. There is a lot of hardship here and change comes very slowly. This week, we got some much-needed good news! It was officially announced that grant money has been secured to demolish 140 structures in our town. After demolition, the property ownership will be transferred to non-profit community organizations. This process will make our town safer and even more beautiful! Plus, local non-profits will be able to take care of the properties and use them to help our community. S and I are excited about this, especially since one of the homes is less than a block away from us.
- Ashlie has reached out to me time and time again to walk with me through my healing process. She openly shares her experiences with dysautonomia in an effort to help me live a fuller, healthier life. She’s found a way to help other people with chronic illness, and I truly respect her for that. I received my Physician’s Kit and Wholesale membership last Saturday, and I am grateful for her willingness to share her journey with me. I have seen some great results by using my oils this week 🙂 Using the OnGuard essential oil has helped me fight off flu germs, which is a big deal for me these days!
I hope that we can all take time this week to consider how we can be wounded healers to the people in or lives.
I have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome (POTS). I’ve benefited greatly from medication and physical therapy, but I am always looking for more ways to help myself manage my illness. I first met Ashlie through her blog when I won a contest. I received a 5mL bottle of Wild Orange essential oil and Ashlie sent me a few other samples for managing POTS symptoms. Ashlie also has dysautonomia and she’s spent time learning which oils help her most. Thanks to her, I found oils to help with my abdominal pain, nerve pain, and anxiety. You can read more about how I use essential oils here. Or you can comment with questions for me. I’d be happy to share what I’ve learned with you.
On December 16, Ashlie is leading a webinar about managing dysautomia symptoms. I’ll be attending, and I want to share the opportunity! I encourage you to consider learning from Ashlie. She has a heart of gold, and she truly wants to help people live healthier lives. Click the link below to read more about the webinar.
To learn more about doTerra essential oils, click here or attend the webinar on December 16!
My heart breaks every time I learn about injustice. I am a deeply empathetic person– it’s just the way I am wired. I can see that people all over the country are experiencing pain and feeling misunderstood. There is a lot of hurt these days, and it seems to keep spreading. As I’ve watched the news this week, I’ve felt moved to make a difference, so I’ve been thinking about what I can do to bring positive change in my community. I’ll have to be creative, since my illness causes me to spend a lot of time at home, but I am determined to bring a bit of light into the darkness we face.
I don’t understand why people think that hostility and hatred will bring change. It won’t bring understanding or grace; all it can bring is more hurt. When I watch the news and listen to the people around me, I don’t think we need any more pain. We need kindness, we need forgiveness, and we need to feel heard. We need to know we’re not alone, even when things get messy. Deep down, we have a lot in common.
I know that injustice, racism, and inequality are complex issues, and I still have a lot of learning to do. In the meantime, I’d like to offer a few ideas for bringing hope into our communities.
- Focus on listening to others. Instead of spending your time thinking about the “perfect response” during a conversation, listen to the other person. You’ll be surprised what you learn when you take the time to focus on someone else’s need to be heard.
- Look for volunteer opportunities. If you want to make a difference in your community, you may need to do some groundwork. Most charities and community organizations are stretched pretty thin, so they don’t have a lot of time for recruitment. If you care about people experiencing poverty, look into the food pantries in your area. Consider donating food to them every month or set up a time to talk with the director about helping distribute food. If you want to help children, see if there is a chapter of Big Brothers Big Sisters nearby. You need to add your volunteer work to your schedule so that it becomes a part of your life. Otherwise, it’s easy to put it off.
- Get to know your neighbors. These days, we often connect online, and we sometimes forget about the people who live next door. It can be a bit awkward to say hello to someone for the first time, but most people will say hello in return. Think about baking some Christmas cookies as a friendly gesture– it’s a great way to break the ice. This time of year can be tough, so think about ways to be kind to the people who live nearby.
- Collect items for a worthy cause. Hygiene items are in high demand for people with little or no income. Consider collecting toiletries from friends and family to donate to a local charity. Or put together baskets of feminine care products, hair brushes, lotion, hair spray, etc. for a domestic violence shelter. Socks are also a much-needed item at shelters. Ask loved ones to give a pack of new socks with your holiday gift and then bring the collection to local homeless shelter. You can also call specific organizations to see what they need most so that your collection can be especially helpful.
I encourage you to set aside time this week to do something positive for someone else.
Be the change you wish to see in the world. -Gandhi