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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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Thinkstock photo via kotoffei.

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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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Thinkstock photo via NanoStockk.

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When Your Partner Is Constantly Worried You Will Die From Your Chronic Illness

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“I’m just not 100 percent sure, that’s all.”

“Sure of what?”

“Whether it’ll just, you know, stop. What if it does?”

What if my heart just stops? I could be out on my measly 15-minute walk, all alone, and it could just go out of control like it’s never been out of control before and then explode inside my chest and I die.

 

Or…

What if I just quietly slip away in my sleep and everyone thinks I’m sleeping in but I’m not – I’m actually dead?

Or…

What if we’re overseas or in the city or in the bush somewhere and something happens and there is no help around and we try to call them but it’s too late and I die?

Because what if. And what if. And what if.

I can go to town on thoughts like these. When I was a patient in the acute cardiac ward waiting for some answers, I used my overactive imagination to dream all kinds of terrible-awful-what-if scenarios. There is no limit to them, if you think about it. But since I got home and I connected with some other POTS (postural orthostatic tachycardia syndrome) people online, my anxiety over suddenly dropping dead has almost (but not completely) disappeared. At my last appointment, I tested the waters of my anxiety with my GP. Dipped my toe in, if you will.

“So,” I said, trying to look casual in front of Dr. Movie-Star-Handsome. “Let’s say I’m out on my walk, and my heart rate does its stupid thing where it goes from 90 to 160.”

He nodded and blinked his Movie Star eyes. “Yes…”

“What happens if it doesn’t stop going up? Do I pass out? Or do I, well, die?”

I won’t bore you with his sensible doctorly response. But he basically assured me that at a certain point I would pass out, my heart would do a little reset, and no, I would not die. I left that appointment feeling a bit more confident, even if the idea of passing out while alone on my isolated street that has no footpath doesn’t sound that rad.

But my husband…my husband. My husband is still stuck listening to his internal panicker. He’s firmly on the what-if merry-go-round. So what do you do if your partner is worried you’re going to die? Like, legit worried?

You acknowledge it, and then you always go back to the facts. You say, “What evidence do we have to support that worry?” You try as hard as you can to separate the fear from the truth. And then… You manage the fear-induced desire for control firmly and kindly. All of the “No! I’ll carry that!” and the “You sit down and don’t move forever and ever!” and the “You didn’t reply to my text within 1.2 seconds – are you OK?!”

Because when you’re sick and your independence is already limited, whatever is left is more precious than gold. You have to protect that independence with everything you have. In our house, the rule is – you have to let me do it, and I promise I will be honest if I need help. It’s very hard for my husband to watch me pant and curse and struggle just to carry a shopping bag into the house. But it’s harder for me to feel like the world is happening all around me, and I’m stuck in a bubble, unable to break out.

So: You have to let me do it, and I promise I will be honest if I need help.

Sadly, chronic illness affects everyone in a family, not just the patient. Which is just another jerky thing about it.

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Why I Believe My Chronic Illness Defines Me

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As a subscriber to various chronic illness forums, I often hear the phrase, “My illness does not define me.” I have pondered that statement and asked myself the same question. Does my autoimmune disease or POTS (postural orthostatic tachycardia syndrome) define me?

When I look at my life today, I can’t seem to separate myself from my illness. I am still me, but I can’t deny the effect of my limitations or the experiences caused by my disorders. Certainly there are moments in my timeline that only exist because of my sickness. In fact, most of my experiences these days are defined (or confined, rather) by my illness. Many of these events and the memories they have produced have not been wholly positive.

For example:

– Every time I go out in public in my wheelchair wearing knee-high compression socks, dark sunglasses and noise-cancelling headphones I feel awkward and conspicuous.

– That embarrassing time my wheelchair hit a bump, tipped over and I found myself prostrate on the asphalt in a crowded venue and unable to get up.

– That time I had a decent day and thought I was doing well enough to attend a friend’s party, only to become a public spectacle when I passed out on her couch.

– Or that time a stranger patted me on the head and told me I was a “pretty girl” – as if he were speaking to a child just because I was in a wheelchair. (I’m sure he had the best intentions…)

– Or those multiple times before my diagnosis when various healthcare providers accused me of being drunk (I’ve never had a drink in my life), on drugs or needing a psych consult because they couldn’t figure out what was wrong with me. And that one doctor, in particular, who got up in my face while having a cataplectic, adrenaline-dump, pseudo-seizure attack in the ER, and started yelling at me that he knew I was “faking it.”

– Or the many, many times I have missed out on my kids’ recitals, performances, games, graduations or family activities and vacations because I was too sick to attend… Those are the hardest.

These experiences have all been defined by my illness. But what about me, myself? Am I defined by my illness? I recently saw a quote by Brene Brown that helped clarify this question for me. “The irony is that we attempt to disown our difficult stories to appear more whole or more acceptable, but our wholeness – even our wholeheartedness – actually depends on the integration of all our experiences, including the fails.”

Having POTS has definitely changed my life and changed me with it. It has made parts of my life harder. It has provided unsavory experiences (as aforementioned) that I never want to endure again, and some that seem to be stuck, like Groundhog’s Day, on repeat (like waking up feeling disoriented, sick and drugged every single day).

But it is not all bad.

Having chronic illness has also refined me.

– Having a chronic illness, and all the experiences that come with it, has made me more compassionate and more empathetic towards others. I understand what it’s like to not feel
whole, and my heart aches for others that are struggling.

– Having a chronic illness has increased my gratitude.  I have such an appreciation for the little things in life that I used to take for granted. I am grateful for good days and precious time spent with my kids, family and friends. I relish the moments I get to snuggle my kids and celebrate when I feel good enough to leave the house (and return home again without major incident).

– Having a chronic illness has humbled me. It’s a difficult thing to
not be self-sufficient all the time. It’s hard to rely so much on others and to accept help when needed. (I’m still often stubborn.) It has helped me realize we are all in this together – to lift and help each other, which has also increased my desire to help and serve others in the ways that I can.

– Having a chronic illness has allowed/forced me to be creative. Being a busybody that has had to spend so much time in bed has forced me to figure out things I can do from bed to feel productive (like write a blog) and search for ways to still feel useful in helping my family and others when I can’t physically do as much.

– Having chronic illness has taught me that I can’t take myself too seriously. For example, when I couldn’t physically walk from one room to another, I had to laugh when my husband had to drag me around on a blanket (mostly so I wouldn’t cry). I don’t worry about wearing makeup, doing my hair or looking nice most days because what little energy I have I prefer to put towards time with my kids, or working, or trying to exercise to help myself improve.

– Having chronic illness has forced me to de-stress. Pre-POTS I was always a mover and shaker – as well as a big ball of stress. Patience has never been my virtue and sitting still was not a thing I could abide well. Although I had health issues well before my “great POTS crash of 2015,” I didn’t allow myself the time to rest and recover as I needed. I pushed through until my body finally gave out and I couldn’t push anymore. Learning to let go of all that stress I carried around was hard.  But I now see that a lot of the things I used to worry about don’t really matter. And, in many ways, I am a happier person for that.

– Last but not least, having chronic illness has increased my faith. I have always had a strong testimony, but through my experiences, I’ve had to rely even more on my Heavenly Father and my Savior, and I have seen their influence in my life each and every day.

So back to my original question: Does my illness define me? While I am certainly more than just a girl with POTS (or a “pretty girl” in a wheelchair), chronic illness has certainly played its role in making me who I am today – or at least clarified the parts of me that needed a stronger definition. So my answer to that question would have to be a resounding yes. It does define me. For better and for worse, my illness is part of me, perhaps just one part, but it has defined my experiences and my life, which in turn, have defined and refined me.

This article was originally published on Mommy Can’t Dance.

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Thinkstock photo via wacomka.

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50 Reasons to Laugh (or Cry) About Living With POTS

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My journey with being diagnosed with POTS (postural orthostatic tachycardia syndrome) started back when I was 7 or 8 years old. Little things I thought were normal would bother me, such as blacking out for a few seconds when I stood up too fast or the sun hurting my eyes and always getting a headache after a long day at the beach. I thought it was normal to have a faster beating heart and get dizzy after doing my cheerleading routine. I was finally diagnosed with POTS exactly one year ago when these “quirks” I had experienced throughout my life were recognized as real symptoms of a real condition.

A few weeks ago I came to the realization that most of the things I do throughout my day are because of either POTS or one of my other chronic illnesses. Normal 20-year-olds do not wear compression stockings and don’t always have to have emergency medication on hand, but I do. That is just part of the nature of this disorder, and it has become part of my life. I wrote this piece to hopefully make a few other POTSies out there laugh and know they are not alone in this fight.

dysautonomia awareness ribbon

Here are 50 aspects of POTS that might make you laugh (or cry):

1. Getting “normal” people sick is 100000x worse when living with POTS.

2. But seriously, a sinus infection that lasts six weeks?! Ridiculous.

3. On that note, having a terrible immune system.

4. Being a germ-a-phobe because of your crappy immune system.

5. The eternal sadness of leaving the house without your Gatorade and salty snack.

6. People thinking your thigh high compression stockings are lingerie.

7. Sweating from wearing compression stockings under jeans in 75-degree weather.

8. Having severe body temperature control issues.

9. Dressing in layers in all seasons because of your faulty internal thermostat.

10. Having to take a break after one flight of stairs.

11. Don’t make me do two flights.

12. You did the two flights didn’t you…

13. Feeling like you just ran 10 miles after the two flights of stairs.

14. The excitement you get when you find a new flavor of Propel/Gatorade/Powerade that you love!

15. Having piles of electrolyte solutions stockpiled because you like to have a nice variety.

16. Four words: Standing Up Too Fast

17. Four words: Falling Right Back Down

18. The small satisfaction you get from filling your pill box.

19. Being a young person trapped in a 80-year-old’s body. (Hello…this body is defective. Can I get a new one?)

20. Having to explain what POTS is to everyone who asks.

21. Explaining that “POTS” has nothing to do with weed.

22. Checking the menu thoroughly before you even dare to go to a restaurant to make sure they can accommodate your dietary restrictions.

23. Being thankful for potatoes and their many forms you can eat them in.

24. Putting an ungodly amount of salt on your foods.

several jars of salt

25. People questioning you on this one.

26. Having to sit down in stores because you’re tired.

27. Laying on the floor of Target just isn’t socially acceptable I guess.

28. Your love for caffeine.

29. You consider going to the doctor a hobby.

30. It probably took you at least five or six tries to find the right doctor.

31. Telling the doctor your long list of symptoms.

32. The doctor saying, “Wow, I’ve never heard of that symptom before.”

33. Getting a prescription for some new medication to try.

34. Research the new med for hours because who knows what the side effects might do to your body?

35. Owning 10 pairs of sunglasses because the sun is too damn bright.

36. Oh, you forgot your sunglasses today? Have fun squinting and trying to drive. That’s fun.

 

37. Knowing the best time to visit our good friend the ER for some fluids.

38. Trying to explain POTS to your friends and family.

39. And eventually you don’t even know what you’re talking about because it’s so complicated.

40. In fact, your whole medical situation is just “complicated.”

41. That moment when brain fog takes over.

42. And you walk into the grocery store and forget why you came.

43. Ah yes, you came for some Pedialyte, that makes sense…as you almost pass out in the parking lot.

44. Going to the ER and having to explain your condition to the doctors because they have never heard of POTS.

45. Your friends and roommates coming to you for medical advice because you’ve spent so much time with doctors.

46. You have a migraine? Lay in a cool dark room with an ice pack. Also, here are two different essential oils to rub on your body and three ibuprofen. If that doesn’t work, come back and see me in a few hours.

47. That feeling of elevating your feet in bed after a long day.

48. With an ice pack.

49. And with as little clothing as possible because body temperature problems are rough.

50. And going to bed to do it all over again.

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Thinkstock photo via Dirima.

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POTS May Not Be Life-Threatening, but It Is Definitely Life-Changing

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I’ve spent a ton of time thinking about how to explain my “invisible illness” and how I live with it day after day. For starters, I was diagnosed with POTS this month last year. But I look completely like a “normal” teenage girl. Just because you can’t see my symptoms doesn’t mean they’re not there. They will always be there for me.

Many of you may have no clue what POTS is and that’s OK. It’s a very rare syndrome; it’s also a chronic illness. POTS stands for postural orthostatic tachycardia syndrome. It’s one of many illnesses that are in the “dysautonomia” category. Dysautonomia includes all the illnesses dealing with your autonomic nervous system – and basically your nervous system is your “control system” for your body. Which means if you have one of the illnesses, it can affect pretty much your entire body.

POTS is mostly known for causing an abnormal heart rate, heart palpitations, dizziness upon standing and the inability to tolerate standing. But that’s not it; there are multiple symptoms.

Have you ever had a moment where you go to tell someone something but as you go to do it, you completely forget everything? That’s what it’s like dealing with POTS. You can tell me the same thing over and over, but I won’t remember it, at all. I try, believe me.

Living with POTS involves standing up and waiting five to 10 seconds for the dizziness to go away. Or carrying around Gatorade and some Ritz crackers everywhere you go. And drowning your food in salt because “it’s gonna make you feel better.” It gets tiring after a while, it really does.

Living with POTS as a teenage girl who goes to a public school isn’t that easy either. I’m told I “need to go to the hospital to be un-infected” and that I’m “contagious.” Since I have a syndrome, I am made to feel automatically disgusting and am not included in anything.

It consists of trying to explain to your friends why you don’t want to hang or can’t hang out. Trying to explain why you canceled last minute.

It consists of wondering how to get through each day without overdoing it. Trying to plan ahead with everything. Then there’s the anxiety and depression.

It means that even if I lie down for hours and relax, it is still an issue to do everyday activities. An example: going to get the mail. You feel OK, then you start walking and you don’t know if you’re going to be able to make it back to the door.

It consists of seeing pictures that your friends posted of them at a beach or at the movies and wishing you could be there. Because at one time, you were them. You could enjoy life’s simple moments.

It means you might sometimes feel like you’re not loved, not wanted, or other negative thoughts. You know you’re loved and wanted, but your illness can make you think otherwise.

It consists of some days when you’re able to stand up without being dizzy, when your heart isn’t fluttering all over the place, when you’re OK that day. But the next day can be the complete opposite.

It means that someone without an illness won’t need any effort getting out of bed, but you, us, need at least three times more effort to get out of bed.

It consists of standing up and feeling your heart beat faster and abnormally. One moment your heart rate is in the 70s, then 50s, then 130s.

People with POTS do need a lot of support. We need to be told how much you love us each day. We need to know that we’re “normal” even if we’re “different.” We may be a handful at times, but we need help with simple tasks.

POTS has changed my life and my perspective of it. Life isn’t all that bad, you know. Life is pretty good. (And that’s coming from someone whose illness has changed everything.) POTS isn’t a life-threatening syndrome, but it definitely, honestly, is life-changing.

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Thinkstock photo via artlazareva.

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