Before and after POTS.

How the Symptoms of POTS Affect My Life

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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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Comparing Myself to Those Who Are Physically and Mentally Healthier Than Me

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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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Fighting for Insurance Coverage of Treatment for My Child With POTS

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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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How Working Out Has Helped Me Manage My POTS

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Editor’s note: The following is based on an individual’s experience and shouldn’t be taken as medical advice. Please consult your doctor before starting new workouts or treatment plans.

On the morning of March 12, I was emotionally worn out, but I knew I needed to include physical activity in my day. My grandfather, whom I dearly loved, passed away from a brief battle with cancer three days before. Between stuffing myself with desserts, crying and getting no sleep, I could only imagine the POTS flare-ups I would experience if I skipped one more day of exercising.

 

So, I put on my most comfortable leggings, threw on a pullover jacket and laced up my shoes. I started running in my neighborhood with the intention of doing three or four miles. Instead, I ended up running 10 miles straight. (Note: I had been following a plan over the summer that was gradually increasing my mileage and the longest distance I was up to was 9.50, so I did not force my body to run 10 miles all of the sudden.)

I was proud of myself and I remember sitting in the driveway after my run stretching and eating peanuts. I realized on that Saturday morning I am a runner.

Oddly enough, I never knew my talents until I was diagnosed with POTS. If my cardiologist had not told me to start walking every evening, I would have never realized I could run, too. If I was not required to do cardio on a daily basis, I probably never would have gotten near a treadmill and I still would not know what circuit training is.

But now, thanks to an annoying thing called POTS, I make myself work out every day. I run when it’s 95 degrees out, I run when it’s below 20. I sacrifice my free time and choose to be disciplined instead. I spend my money on shorts and tank tops I can never wear to school, but I buy them anyway so I won’t sweat to death in the summer. When I am on vacations, I still find ways to exercise (including but not limited to: doing jumping jacks in hotel bathrooms and using beach chairs as equipment). The storage on my phone is at an all-time low because of all my fitness apps and I have Runner’s World magazines all over my room. When my friends and I hang out, they know to have me home by a certain time so I can get a workout in.

All of this seems like an inconvenience, but here’s a secret: I love it. Exercising has not only tremendously helped me manage my POTS symptoms, but it has given me confidence and emotional strength I never knew I had. Exercising is such a stress reliever for me and I cannot wait to get home from school to try out a new Popsugar Fitness video or jam out to music while I’m on the treadmill.

So, moving past my personal feelings and experiences, let me write on my specific workout plan. This is just an example of a normal week, but my exercising varies throughout the months based on my fitness goals and circumstances.

Saturday: Run 9.50 miles

Sunday: 25-minute walk

Monday: 20 minutes of circuit training, two-mile bike ride

Tuesday: 30-minute run on treadmill

Wednesday: one hour, 15 minute bike ride

Thursday: Run 6.25 miles

Friday: 20 minutes of circuit training

Saturday: 20-minute Fitness Blender cardio video, stretches with resistance band

I know my plan may seem daunting if a person’s POTS symptoms are at their worst. I had to build up to intense workouts over the course of many months. Surprisingly, the harder the workout, the better I feel. Also, it is important to not feel discouraged by what to seems to be a lack of progress. The first few weeks I started walking, I felt so weak every day, exercising seemed pointless. But, in those mundane evenings, my body was getting stronger and preparing myself for the point I am at now. Hang in there.

This post originally appeared on One Foot in Front of You.

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Celebrating My POTS Diagnosis

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Having chronic health conditions is not easy. Sometimes the hardest part is trying to figure out what is going on with your body and how to fix it, more so sometimes than actually dealing with the illness. Going to doctor’s offices is quite common for somebody with chronic illness. Often you go the first time to figure out what is going on and they want you to come back for biweekly or monthly checkups to make sure you are doing well on the medication they gave you and/or to figure out another plan. If you weren’t exhausted before, you certainly would be after all the doctor visits. This cycle truly does get old, and if you are anything like me, you beg your spouse to just let you stay home instead.

 

Last month was one of those follow-up exams with an excellent physician I have been seeing who specifically treats ME/CFS, fibromyalgia and POTS. At my first visit he said clearly I was sick and I was a symptom away from meeting the criteria for all three of the conditions he treats. This was extremely confusing for me as they all seem to mesh into one big disease that doctors can’t figure out. What is truly wrong with my body? How can I fix it? That is all I want to know!

For the last three or so years I have been extremely light-headed while standing up. I have mentioned this symptom to my cardiologist as I have had yearly checkups for a heart arrhythmia I have. He repeated his advice of eating more salt, drinking more water and wearing compression tights or socks to help alleviate the symptoms. This is really good advice, even for POTS patients, but no matter how much water or salt I was taking in, I still experienced blackouts multiple times a day.

Just the other day I was reading a book on my bed while the kids were playing with their friends across the street. They all came rushing inside and so I slowly sat up, got off the bed and walked into the hallway, at which point I blacked out and couldn’t see the kids who were right in front of me, though I could hear them. It took me a minute to gain my normal vision and talk to them. This happens so often I have gotten used to the mechanisms I use to stop myself from truly passing out or falling down. It has become second nature for me to sit down often, usually in a reclined position, take a minute to walk after standing up, hold onto walls, furniture, etc. all for this purpose. Usually the blackouts end with a throbbing headache from lack of blood flow to my brain.

As I was lying on the exam table getting my blood pressure and pulse taken while lying down, I couldn’t help but imagine that the test to assess for orthostatic intolerance would come back normal. All my others tests have, I thought. Generally my blood pressure and heart rate, especially resting, are pretty low. The reading came back as 78 BPM for my pulse and my blood pressure read something like 117/78. I was then asked to get up and stand with my shoulders to the wall and my feet together about one foot from the wall.

Three minutes into standing against the wall my whole body was shaking and I felt like I would fall to the floor. I couldn’t use my normal mechanisms to cope with the orthostatic intolerance. The doctor told me my heart rate had climbed by 45 beats per minute and my blood pressure was now somewhere close to 140/98. The problem is my autonomic nervous system wasn’t regulating my body’s reaction to blood pooling, making it so blood wasn’t getting to my brain, causing the symptoms I explained. I don’t remember how long I stood on the wall, but I remember not feeling well and having to hold onto the doctor to get back to the exam table which was no more than a couple feet away from me. I collapsed onto the table and felt awful for the rest of the day.

When the doctor said there was no doubt about it that I had POTS (postural orthostatic tachycardia syndrome), my husband’s first response was, “We should go celebrate.” When you have chronic illness you understand that when you have a name for your health problems, it’s a step closer to victory. Our celebration ended up with him getting Chick-Fil-A for dinner because I needed to lie down for the rest of the night.

I have since been on a medication that helps retain the salt-water balance in my body called Fludrocortisone. The benefits have been amazing. I couldn’t remember if I took it one morning, so opted to not take it and I couldn’t believe how dizzy and lightheaded I felt. I couldn’t believe I had been living so long like that. I made sure to take the pill the next day as soon as I could. I still have a long way to regaining my health back and am making small steps forward, but I am grateful for doctors who listen, research and treat patients the way they should be. Maybe all the doctor visits aren’t so bad after all. Sometimes they even end up with a celebration!

I believe in you. I believe you can make miracles happen. And I believe that peace (true inner peace) is the answer.

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To the Doctor Who Delayed My Diagnosis by a Year

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Dear Dr. X,

I saw you at the start of my illness when my symptoms were at their worst. Most days, I struggled to get out of bed and attending appointments was a huge effort for me. Despite this, your advice to me was to go for a walk every day, even though you knew I struggled with chest pains and dizzy spells. Your advice made my symptoms much worse and my condition deteriorated to the point where I couldn’t leave the house without assistance.

 

I now know I have postural orthostatic tachycardia syndrome (POTS) and if I had been referred to a cardiologist when I first asked, then I would have been diagnosed a whole year earlier than I was.  I wouldn’t have lost my place on my Master’s degree and I would have been able to go and see my Grandma before she died.

One time, you wrongly attributed my symptoms to “emotional distress” and I hung up the phone. I was clearly very unwell – why couldn’t you see that? Every time I made the effort to attend an appointment, you repeatedly asked me about drugs instead of taking my blood pressure and pulse. I believe I received a poor standard of care from you, presumably due to my age and gender.

Maybe, you’re one of those doctors who believe that young people can’t get sick. I can tell you now that they do and my hands shake because I have an illness that affects my nervous system, not because I’m a drug addict. My advice to you is: treat the symptoms you are presented with and treat the patient as a person and not a stereotype.

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