A digital art of a woman, black and white in color scheme.

Before I became chronically ill, I had the job that I dreamed of, I traveled to the places I wanted to visit, I went out whenever and wherever I wanted, and I made many friends and went out with them. I did all of these things without a second thought, without worries, without fear that one day I can’t do them anymore.

When I became chronically ill, I started to have this understandable fear of missing out (FOMO)… missing out on seeing my friends, on jobs opportunities, on visiting family members, and on traveling to new places. Basically missing out on everything I used to do, missing out on everything a young adult usually can do in their 20s, but I can’t do.

This a real fear to any chronically ill person, and it’s an awful feeling – especially for young people. Your 20s is the time when you have to take care of yourself and build your future, and also to have the time of your life. But, when you’re ill, everyone around you is living their life and working on themselves – and all you can do is stay at home and do nothing and watch life pass you by.

I would like chronically ill people like me to know that even if we’re missing out on many things, we still can live and enjoy other things in life. We can enjoy things we didn’t pay attention to before. Everyone of us is different, so everyone has their own things that they can still enjoy and able to do.

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Being diagnosed with postural orthostatic tachycardia syndrome (POTS) just over a year ago was a shock. I entered the doctor’s office assuming I was being silly and I left with a diagnosis, a help sheet, and so many questions. I remember frantically searching the internet for the life expectancy of someone with POTS (spoiler alert: it’s the same as, or even higher than, the typical average – depending on which articles you use). Hours were spent trawling through scientific journals and charity resources, as well as some “fake news,” to discover what caused POTS and how I could fix myself. Unfortunately, it seems I can’t.

There isn’t a surgery or a course of treatments or a quick-fix medication to take. When I discovered this, my heart dropped through the floor. How could there not be a cure? Was I just supposed to give up any chance of the life I had anticipated having? Utter despair.

However, after moping and crying and hunting for a magic medicine which would heal me, I realized something. I was flicking from tab to tab on my browser, reading page after page, but I wasn’t understanding how POTS impacted me. I didn’t take the time to consider my worst symptoms and practical measures which could improve them. By ignoring the suggestions for improvement and focusing on the onslaught of new information and the minuscule chance of a cure, I was robbing myself of the opportunity to improve – even slightly. My outlook changed immediately. I re-visited websites and noted down their tips for managing POTS instead of the most common symptoms. Rather than complaining in Facebook groups, I asked what successful adjustments the members had made and experimented with them.

I’ve discovered that there are changes I can make to minimize my symptoms – so that, rather than being greeted with static upon standing up, I now just wobble.

It hasn’t been easy. Like the thorny devil lizard, which hydrates through its skin in sweltering temperatures, I’ve had to adapt in order to cope. I now drink more than three liters of water each day. In my bag, there’s now a packet of crackers to increase my salt levels if necessary. Utilizing the spoon theory allowed me to explain my energy levels to family members; I could tell them how I felt without it being misconstrued as simply “tired.” They no longer had to attempt telepathy to understand how much more I could cope with.

Sometimes, life gets in the way of my carefully curated management plan. Due to a late night, being too rushed to drink my water, or merely chance, I have days when I regress to my earlier self: too afraid to stand up, too frightened to look past the statistics and to just try. On those days, I revert to doing whatever is necessary. I hide away from the world. However, I know that I can – and will – emerge from the dark and return to relative normalcy. Adjustments have been made. My life may not be what I had anticipated, but it is still so worthwhile.

I know that I may not ever get better. I also know that I can improve more than I thought possible.

Follow this journey on A Side of Spoons.

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Thinkstock Image By: Dreya Novak


I am getting married next month and have pretty severe POTS, but it has not stopped me from enjoying this time being engaged! I’d like to share some tips with you all about how to plan a wedding while dealing with this lovely condition.

1. Prioritize.

Put more time, energy and finances towards things you really care about. For me, a couple of those things entailed finding the right photographer and videographer who would capture these memories for a lifetime.

2. Consider adding chairs or a bench to your theme for you and your fiancé to sit on during the ceremony.

Unnecessary time on your feet might trigger a fainting episode, if syncope is one of your symptoms. Save your strength to stand for the vows!

3. Recruit reinforcements for your bridal fittings.

When attending a bridal fitting, have “spotters” and “stabilizers” to help keep you steady while the tailor is pinning your dress. In the case of an episode, it’s good to have a couple people there to catch you. I fainted at my fitting a couple weeks ago and luckily, I had two women on either side of me to break my fall. They now know to work extra quickly with me and they keep Gatorade, salt, washcloths and nuts close by.

watercolor painting of a woman fainting at her wedding dress fitting
Credit: Ashley Hartman

4. Don’t get too caught up in the minute details.

It will only stress you out when things go differently than you expected them to. Have fun with it, and save the stress for the bigger things that really matter. You don’t want to add extra stress to yourself since that tends to exacerbate our POTS symptoms.

5. Ask for help.

If you’re like me, you may like to do just about everything yourself. Trying to do every little thing will be very wearing on your health. Chances are, you have friends and family who are willing and honored to offer their time and services to help the planning process and day go smoothly. It can be hard asking for help sometimes, but I’ve had to get over that during this engagement season. People like an opportunity to serve, so let them. And trust me, their help really does go a long way!

6. Pause.

POTS or not, I suggest anyone planning a wedding take this advice. You need days where you don’t think about anything wedding-related or make any progress. Take time to yourself to just relax. This is an exciting time and you want to enjoy it as much as possible.

7. Coordinate with the rehearsal dinner and wedding venue regarding room temperatures.

You’ll want to avoid getting overheated, so ask the venues if they wouldn’t mind keeping the rooms on the cooler side.

8. Do what you can when you can.

If all you’re able to do one week is lay in bed, perhaps work on writing a special note to your partner, or call to schedule a nail appointment. Don’t push yourself too hard or you’ll set yourself back. And ask for help if you’re having a lot more flare-ups during this time.

9. Assign designated people to remind you to sit down and take breaks throughout the day.

Make sure some friends or family are there to give you a signal to take a break. I’m referring mainly to the prep time before the event happens. It will be harder to take “breaks” once the wedding begins, but you want to make sure you are able to enjoy yourself and get your dance on so it’s important not to do too much prior. Pace yourself and don’t overdo.

10. Lie down with your feet up the morning of before getting ready.

Think of your body like a cell phone. If you want it to last the whole day, you need to charge it. If you don’t take a little extra time to build an energy reserve in the morning, you may run out of battery before the event is over. Rest, feet up when you can, salt, water and snacks.

11. Wedding Day: Drink plenty of water (for patients with POTS, this typically means two to three liters), consume extra salt and eat snacks!

Stay hydrated, salt up and eat throughout the day. You might get nervous during the wedding dinner and not eat much, so make sure you’ve eaten enough salty things and have consumed enough calories prior to this time.

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I was officially diagnosed with dysautonomia the Friday before Memorial Day weekend of this year, but I have had it since I was a child. I also have postural orthostatic tachycardia syndrome (POTS). If you’ve never heard of dysautonomia or POTS before, no worries, I’ll explain. But before I do, I’ll give you a little background on my journey to diagnosis.

I’d grown up getting sick a lot, and I mean with a variety of sicknesses… scarlet fever (throwback to pioneer times), reflex sympathetic dystrophy (a nerve disorder that started one day in my left foot while I was in the fourth grade), a rare strand of E. coli, and I could go on. I suffered from four concussions throughout my teenage and young adult years, which I believe contributed to my ongoing issues with migraines. My Junior year of high school, I accidentally consumed a little of the local water in Mexico, which turned into three years of excruciating stomach issues and lactose intolerance.

Fast forward to college. I went from fainting once a semester to once a month to once a week at its worst. I would get no more than a three second window to alert someone I was about to faint when an episode was happening. I’d been to the ER several times, wore a halter monitor for a month, doctors ran many EKGs and still, the doctors could not figure out what was happening to me. I was told to salt my foods, drink more water, wear compression socks and perform weight bearing exercises. Let me tell you, this did not do the trick.

I couldn’t function and had no choice but to take a semester-long medical leave from school to figure out what the heck was going on.

Finally, as a sort of “last resort” my cardiologist ordered the tilt table test, where he could witness me faint. I did and so it gave me the criteria needed to get started on a medicine. Midodrine and I had five good years together where most of my symptoms were managed and the fainting was fairly controlled. And then, earlier this year, it stopped working for me completely.

For the last eight or so months, I’ve been struggling again to find the right medication and treatment plan and have learned it is not a simple fix.

Dysautonomia is a malfunction of the autonomic nervous system. My doctor told me to think of the autonomic nervous system as the “automatic” nervous system, since it controls things we don’t think about such as breathing, body temperature regulation, blood pressure, heart rate, and digestion.

And then there’s POTS, a form of dysautonomia, which is a condition where your heart rate can jump 40 beats per minute (BPM) or higher when transitioning from a supine position to sitting or standing, and then your blood pressure drops and you feel awful. Symptoms include things like dizziness, lightheadedness, fainting, chest pain and shortness of breath, nausea, exercise intolerance, inability to regulate body temperature, shaking, lack of concentration, heart palpitations, brain fog, and it goes on.

A person with POTS may experience several or even all of the following symptoms:

1. Fatigue

2. Weakness

3. Fainting

4. Shortness of Breath

5. Chest Pains

6. Indigestion

7. Nausea

8. Headaches/Migraines

9. Heart Palpitations

10. Exercise Intolerance

11. Pre-Syncope/Near Faint

12. Inability to Stay Hydrated

13. Dizziness/Lightheaded

14. Vertigo

15. Sleeplessness and Night Sweats

16. Brain Fog

17. Reactions to Food

18. Increased Heart Rate

19. Random Body Pains

20. Acid Reflux

21. Ringing Ears

22. Cold Hands and Feet

Many of the symptoms I just listed are invisible, but they are very real.

I look perfectly healthy on the outside, but in the inside, I have dealt with all of the symptoms above. All may not be present every day, but I deal with a good amount of them on a daily or weekly basis. Really, unless you witness me faint, it might be hard to believe something is wrong with me – which makes it harder for many to empathize.

The joke us “POTSies” get is that we look great and sound great, so we must be great.

Dysautonomia International points out, “While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.”

So, what does it actually look like to have some of these symptoms?

Brain Fog.

Brain fog feels like being on drugs that make you really loopy and out of it, except in reality you are sober and the drugs rarely wear off. I deal with brain fog every single day and it is easily the most limiting symptom for me. I haven’t been able to drive for a while because of the inability to focus, see straight and for fear of having a fainting episode while behind the wheel. Imagine having to figure out ride situations to go to work, get to doctor’s appointments, social events, or anything else. I haven’t been able to work well because it’s nearly impossible to stay focused and fight the fog to get stuff done. Focusing for too long on the computer exacerbates all my symptoms and brings on migraines as well.

Brain fog also has affected my memory. I write everything down and set phone alarms to remind me of things throughout the day, because if I don’t, I lose the thought or I won’t get it done. I forget when I’ve taken my medication or if I’ve taken it at all, I leave my keys in the door, and I forget simple words in conversation because my recall and processing time is all wacky.

Migraines.

Light sensitive, noise sensitive and debilitating pain in my head. I’ve been waking up with these on the daily over the past few weeks. It’s tough enough trying to get out of bed when you’re completely exhausted, dizzy, and weak, but then throw a migraine on top of it, and it becomes nearly impossible.

Before and after POTS.

Dizziness and Pre-syncope.

Getting up quickly is simply not an option for me. Morning’s tend to be one of the most symptomatic times of the day. I “sloth” out of bed, which involves me slinking off my mattress slowly and then when I’m ready to stand, I grab hold of things around me to carefully hoist myself up. If I get up too quickly, one of two things typically happen:

1. I begin to feel light headed, get tunnel vision and begin to black out and sometimes faint.

2. I get bad palpitations because my heart rate just jumped 40 BPM higher than it was when I was lying down. My blood pressure begins to crash so it feels like my heart is working too hard, my breathing becomes labored and I often get chest pains.

Fainting.

Hot cold sweats. Tunnel vision. Sudden nausea. Weakness. And then it all goes black. Fainting is one of the most uncomfortable symptoms of having POTS. Plus, if I faint, it takes me an entire day to get feeling back to normal, my new normal that is. The last time I fainted a couple weeks ago, I could not walk by myself for the rest of the evening and had to lay in bed with fans, my legs elevated on my bed wedge, ice packs on my arms and water and salt by my side.

Inability to Exercise.

I used to run half marathons and work out nearly every day. Now I feel faint after walking just a mile or I get overheated. Working out is just not an option for me at the moment. I’m too weak and fatigued for pushups. Whenever I try and do any kind of cardio, weights, or even strengthening exercises, my heart rate speeds up too fast and palpitates so hard that I feel it might beat out of my chest. If that doesn’t happen, I get such a bad head rush or headache that I feel I might faint. I’ve been told exercise overall helps to manage the symptoms, but once you hit a point where it’s hard to exercise, it can actually make symptoms worse.

Failure to Regulate Body Temperature.

I get hot and cold really easily. I can get goosebumps when it’s 70 degrees out and I get overheated and feel faint even after sitting in a warm car for just a few minutes. I can’t be outside for too long in the summer heat, especially if there’s a lot of standing involved. This makes outside concerts, social events with friends, and barbecues without ample seating very difficult for me.

Not all patients with POTS struggle with the daily symptoms I experience, namely the brain fog, migraines, dizziness/pre-syncope, fainting, inability to exercise and failure to regulate body temperature. Fainting, for example, is only experienced by 30 percent of patients with POTS. I’m one of those “lucky” 30 percent, but it doesn’t mean you don’t have POTS if you’re not fainting.

Often, dysautonomia is linked to an underlying cause. There is no cure or standard method of treatment for all POTS patients. However, figuring out if there is something else going on and then treating that can help lessen the POTS symptoms.

I have been on medical leave from work for weeks. Soon I will be dropping down from a full-time employee to a part time contractor. I haven’t driven in over a month. I’ve started a couple new medications, but still have yet to find relief from my symptoms.

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Compared to a lot of people, I compare a lot. (See? There I go again.) No matter what I do, I compare: to old friends, to new friends, to lost friends, to family members, to peers, to celebrities, to business owners, to people on the street, to people drinking coffee without spilling it, to people on the covers of health magazines, to people driving cars, to employees in a Walmart, to actors on screens – I compare a lot.

And despite years of practice, it has never been of much benefit to me.

 

The amount of my comparison correlates greatly with the amount of struggles I am fighting. Being someone who has never done anything else but fight to keep living, I compare constantly. And the harder I fight, the more I compare.

I recently was in a hospital to keep me safe from my own mind. And instead of being proud of myself for saving my life, I compared my situation to a few girls I knew who were going on a vacation.

Another recent instance was when I was able to go to a mall with only. Five. Anxiety. Attacks. For someone with severe social anxiety, that’s an enormous accomplishment. But it didn’t seem that way when I compared it to my friends and their graduations (some with honors).

Going three weeks without fainting was a giant improvement. But not when I heard that one of my friends got a scholarship to a top college because they had studied so hard.

I went a whole day without being hard on myself…until I saw that my friend who was three years younger than me got her driver’s license.

It’s a pattern. Not attractive like a houndstooth, plaid, striped or polka dot pattern. It’s similar to a beginner gymnast attempting moves used in the Olympics. It’s not pretty. It’s messy. The pattern gets hurt, damaged. The pattern breaks where it shouldn’t. In fact, it isn’t much of a pattern at all. It’s a mess. It’s a chaotic, broken, ugly mess.

It seems like the bigger my accomplishments are in therapy (physical and emotional), the smaller this world makes them seem. People who may be considered “normal” won’t see the steps of progress like my therapist does, or my friends from treatment do. To them, progress is earning their driver’s license, or getting into their favorite college, or getting a job they love, or owning their first car.

To me…

Progress could just be getting out of bed three days of the week. To me, progress might just be trying hard enough to say one nice thing to myself by the end of the day. To me, progress might be waking up and not immediately wanting to go back to sleep.

In the eyes of the world (generally, not everyone), my progress is the easiest part of a daily routine.

“That’s all you could do today?”

In the eyes of my therapist, my progress is a phenomenal leap from where I have been.

“You’ve been working so hard, and you have come so far – and I am so proud of you.”

In the eyes of myself, my progress is…nothing.

“You’re years older than some of these people, and they’re way farther ahead in life than you are. You can’t even drive yet because you keep fainting – you don’t even have a permit – and this person who’s two years younger than you has their own car. You can’t even get a job – you’re so ridiculous, Brooklyn; you should be farther ahead than this. You must not be trying hard enough. Just listen to this world talking to you. You should ‘just push through.’ You should ‘just set more goals.’ You should ‘just try harder.'”

Three different viewpoints.

Three very different standpoints that each stir up very different emotions within me.

The saddest thing is, the belief in the middle is the hardest to believe. Oh, I’ve believed it some days. But those days were few. I try hard to encourage myself, and it works – until I compare again. Then the inexperienced gymnast pattern starts right over.

I wonder some days if that will ever stop. I wonder some days if I’ll be fully healed – of my hurt, of my sicknesses, of my comparison. I wonder some days if I will be completely, wholly, fully confident in who I am.

Until then, I will do one thing – perhaps the best thing – I am able to do. I will let those who love me carry those good beliefs for me. Maybe one day they’ll become mine too.

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Thinkstock photo via Purestock.


Sometimes I forget Meghan goes through infusions once a month. She has made such huge improvements. Neuropathy in her hands and feet is gone. Unmanageable and debilitating joint pain is gone. Constant stomachache and stomach pain is gone. Most nausea is gone. She eats and enjoys most foods she once had to avoid. Dizziness, light-headedness, racing heart, stabbing heart pains, hot spells and shortness of breath — gone. But the effects of the treatment only last roughly four weeks. IVIG is not an approved drug for POTS syndrome, so we had to go to great lengths to get it approved as part of the study she is in. Many insurance policies even state specifically IVIG is not covered for POTS — ours does.

In December it will be three years of infusions — it once seemed like an impossible task that we would do it monthly. Now we just do it. Sometimes a few tears are still present on the hour drive to the infusion center. Mostly because she knows it will hurt a little to get it all set up and we have to watch eight hours of HGTV. And she will not feel great for a few days as the infusion works it’s way through her body. Otherwise, it has become our routine. I have to remind myself it is not routine and it is a powerful drug she receives each month.

In June, right before her brother’s graduation party, I opened the mail from the previous day. In it was a letter from our insurance company stating future treatments and the one she had received two weeks prior were no longer deemed necessary. I knew what it said before I even opened it. I always have that fear in the back of my mind — that some day we will have to stop. The treatments are expensive beyond reason and now we were responsible for one they deemed unnecessary. How can that be? How can you get a treatment and then be told afterwards they are not covering it? And yes, I read the disclaimer that said pre-approval does not guarantee payment.

Monday I started making calls to see what we needed to do next. We are fortunate to have a very supportive group of doctors and nurses we care about as people. A few of the nurses in Meghan’s IV-Therapy center we have come to know well and appreciate greatly. They admire Meghan’s strength and how she never complains as they poke and prod her. I called our insurance company several times, going through many phone prompts and layers of people, recalling our story multiple times. So much time wasted.

It all seemed like such a secretive, scary, wait and see process that was overwhelmingly unfair. We didn’t even know her case was being reviewed and the news came close to two weeks after her last dose (and four weeks after the review). There was little time to get things done before the next dose was needed. One doctor was on vacation, one doctor fulfilling some military obligations, another’s wife had major surgery. We were going to have to wait additional days to get things together. But they were very responsive in getting together an excellent case for our repeal at a moment’s notice. It was submitted and again we waited in the dark wondering what would happen.

I gave it several days before I called again. Denied.  And nothing further we could do. They were sending a letter, which would take another week to arrive. We were now at the date of needing another treatment and symptoms were starting to return.

 

I disagreed and wanted to know who to speak to next. I also requested a meeting so they could explain to Meghan, in person, why they would no longer cover her life-changing treatments. Initially, the nurse said there was no one else to speak to as it was already denied twice, but eventually I was given a supervisor’s number and left a lengthy message detailing all we had gone through, including Meghan’s mental health before we started the treatments. I said I was going to keep calling and talking to the next person. I ultimately wanted to talk to the doctor who had reviewed the case. I wanted to ask him about illnesses of the nervous system and his expertise with antibodies and how they affect the body.

But four hours later, I got a call from one of the nurses the insurance company uses to review cases. She said they looked into the case further and found some missing information from the first approval process and decided to go ahead with another year of treatment. And that because Meghan was doing so well, it wasn’t fair to her to take it away now. I didn’t say anything for a few moments, I had already gone into what’s our next plan of attack mode.

After I had a few days to calm down, I sent an email to the insurance company to say I had some ideas for improving the process and wanted to share our story so that others could avoid the unnecessary stress we had gone through. Someone responded and we set up a call. We talked 45 minutes while she took notes. She seemed genuinely interested in making changes. Things, such as a letter well in advance of an upcoming review of ongoing care, could go out. This gives the family a chance to make sure information is current and to get additional information together well ahead of any review. And a better way to communicate information in a timely way including calls, emails or maybe patients could choose the best way that works for them. A case manager or nurse could keep the family updated on the progress. At the end of the day, this would eliminate the time necessary to re-review cases and handle questions. This would save the patients and nurses time — not as many calls following prompts, waiting on hold and tying up nurses who could be helping other patients.

I am fortunate I have the time to take care of these things for Meghan. Some families may not. Or they may not know what to do next. If the insurance company had let us know the case was being reviewed, we could have made sure they had all the pertinent information. We had previously been on a different timeline for review and didn’t know it had changed. They also had a doctor Meghan no longer sees (they moved away) as the contact doctor. And they let us know four weeks after the start of the review that it was denied. Faster ways of corresponding needs to take place.

What about the patients who give up when they are denied and told there is nothing further to be done? That’s what we were told.

Communication and patient involvement is necessary. How can you make life altering decisions for someone that you know nothing about when you don’t even have all the facts? I am so glad I spoke with someone who seemed interested in fixing things. I hope they are able to make some changes to make the process not such a scary one.

Meg had to wait an extra week for her treatment. Symptoms started to return and now we are working through her body re-calibrating to catch up to her “good place.” Some things she hasn’t had to deal with for a while have returned, which will hopefully fade to the background as time goes on. Meghan’s study, along with other similar new studies, are necessary so that we can get IVIG listed as a treatment for POTS.

Follow this journey at Meg’s Story.

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