Tuesday, December 31, 2013

2013: My Favorite Tools of the Trade

Rather than review personal moments from the past year, I want to review the tools of the chronic-illness trade that I couldn't have done without in 2013.*

1. Omron Blood Pressure Monitor: I finally broke down and bought a BP monitor this year.  It has been an invaluable purchase for me.  For one, when I am having a rough day, it is nice to determine if my BP is the culprit, and if I need to take action to raise it.  In addition, my doctor really likes having data to refer to between appointments.  The more quantitative data you can offer your healthcare providers, the better.

2. Polar Heart Rate Monitor: I have discussed my HRM before.  I use it a lot to help determine how different activities affect my HR and of course to ensure I maintain healthy exertion levels during my workouts.

3. Instant Heart Rate: While I get a lot of mileage out of my Polar HRM, there are moments I need to check my heart rate on-the-go when I am not wearing my chest strap.  The Instant Heart Rate app on my smartphone is great.  The app is very accurate and an easy way to check my HR in a pinch.

4. O2 Cool Necklace Fan: This fan has been a lifesaver for me. My heat intolerance is one thing that takes me down pretty quickly. I keep my fan in my bag, so when I am in a warm waiting room or store I have a better chance of fighting off my heat-intolerance-induced symptoms. My original fan recently died, and when I ordered my replacement, I bought two.

5. BlenderBottle: Even if I did not have a chronic illness, I would love my BlenderBottle. When I say love, I really mean love. I have two different sizes of the BlenderBottle and even convinced my brother to buy one. These nifty bottles are great for mixing up powdered drinks and smoothies in an easy, spill-proof way.  I have also used the smaller-sized bottle to make healthy salad dressings. Add ingredients, shake up, enjoy!

6. Freestyle Lite Blood Glucose Monitor: When I am feeling hypoglycemic or my symptoms aren't explained by my blood pressure, it is nice to be able to keep an eye on my blood sugar. The Freestyle Lite is so compact and easy-to-use. Generally, I am queasy with needles and blood, but I am able to use this monitor without an issue.

7. Herbal Biotic: I am on quite a few supplements, and I am seeing benefit from many of them, but Herbal Biotic is my favorite.  My doctor first put me on it when I went in for a monthly check-up, and I had a low-grade fever and seemed to be coming down with something.  She had me start taking Herbal Biotic that day. Later that night before my last dose of the day, I had that ominous achey feeling foreshadowing the next day's full-blown illness. The next morning, I felt absolutely fine; Herbal Biotic stopped it in its tracks.  Last week, it worked its magic again when everyone else in the family became ill after Christmas. I take this daily for immune support.

Photo from theloftonbroome.com
8. Zing Bars: While these protein bars are expensive and not always easy to find, I love them. Zing bars come in three gluten-free, soy-free and dairy-free flavors. This specific brand was recommended by my doctor. I keep them in my bag and on my nightstand to fend off hypoglycemia.

9. Traditional Medicinals Ginger Tea: Most of us with POTS are plagued with nausea on a regular basis. This ginger tea really helps to settle my stomach, plus it is delicious.

10. iPad: Having a tablet is a great luxury for someone with an illness. You have TV shows, movies, music, books, social media and online support groups all at your finger tips. Thanks to its portability, a tablet is an easy thing to keep on hand.

Have you used any of the "tools" I mentioned above? What are some of your favorites that you couldn't do without?

Happy New Year everyone!  I hope 2014 is a happy and healthy one for all of you.

*Any products and brands mentioned are based on my personal experience. I did not receive compensation from any of the companies or stakeholders of these products.

Tuesday, December 17, 2013

31 Going on 70

Wow... I am officially the worst blogger of all time.  In my defense, POTS got the best of me throughout October and November.  Perhaps this blog will be the focus of my 2014 resolution.

So today is my birthday, and I turned 31.  I became sick at the age of 29, so I feel a little like I am not sure where the past two years have gone.  A friend of mine asked me today how it feels to be 31.  I told her it feels like I am 70, which is a lot like how 30 felt.  So I guess turning 31 didn't miraculously cure me.

I tried my hand at making a batch of "healthy" cupcakes, so as not to completely break my strict dietary guidelines: Pumpkin cupcakes with Vanilla Cashew Frosting.  The cake part was pretty good.  I replaced the white sugar with honey, but I think maple syrup would have been better.  (Unfortunately I was out.)

Let me level with you about the Vanilla Cashew Frosting though.  While it came together well, it just tastes like sweet cashews to me.  I'm not sold on it.  I really like using cashews to make dairy-free "ricotta".  It also has somewhat of a nutty taste but once it is mixed in with spaghetti squash and sauce, I love it.  I should have stuck with whipped coconut cream to top them, which I made for Thanksgiving and really liked. (Of course, I haven't had real whipped cream in years, so I may not be the best judge.)

Anyway, I realize this is more about food than POTS, but it's my birthday, I can write about whatever I want. :)  I hope everyone out there is doing well and soaking up the holiday season!

I will leave you with a video of Straight No Chaser singing "Fix You".  It is not a Christmas song, but it is a song the group always performs at their holiday show in Cleveland.  My friend Amanda and I weren't able to attend the show this year, so she sent me their YouTube video the other day instead.  Then tonight, I turned on PBS in the middle of their TV special as they were performing it.  So the song is choosing me; I didn't choose the song.

Monday, September 30, 2013

Open Letter Challenge

As I have mentioned, one of the ways I cope with being sick every day is to look for things I can do rather than focus on what I can't. Writing is one of these things for me.  So for this reason, I am participating in Josh Irby's Open Letter Challenge.  The following letter is my response to An Open Letter to You from the Rest of the World.

Hello World!

Thanks for the letter. It was nice to hear from you and know you are still thinking of me. I think of you often.

So, you are wondering what my role will be, and how I am going to make my piece fit snugly into the empty hole of our global puzzle?  That’s a fair question; I am wondering the same thing myself.

You know I have always been a dreamer: chasing goals and waiting for the greatness that was most assuredly lurking around the corner.  I ignored the cynics who said I was naïve or gullible and who said eventually your harsh, cold-hearted reality would take a scalpel to my idealism.

Somehow, slowly, yet before I had the chance to blink and recognize what was happening, you were leaving me with open wounds and scars.  Were the so-called cynics right? Were they actually cynics as I had hastily judged them to be, or were they merely realists trying to warn me?  After all, I had now witnessed and experienced first-hand the death, destruction, illness and hopelessness you seemed to manufacture.

But, no, after careful contemplation, I have concluded they were cynics.  Each life, each human experience is a carefully constructed conglomeration of successes and failures, battles and victories.  It has to be.  Without the paradoxes of life, beauty, compassion and everyday miracles can’t be realized.  These things, however, are the true realities of you, World; the authentic effects you are offering us with a strained, outstretched arm, waiting for us to make the next move.

There are still a few shadows clouding my vision, and I can’t see far enough ahead to tell you where my path is headed.  My eyes are opened wide, and my ears are listening intently, so I don’t miss where I am being called to lead or follow.

While I can’t offer you a resolute answer as to what my ultimate role will be, I can offer you this:  I promise to never stop searching and to not allow the obstacles to derail my journey.  My eyes will remain fixed on hope, and I will keep the faith.  Most importantly, I offer you my love: my love of self, my love of others and my love of God. I will encourage rather than compete. I will lift up rather than tear down. I will magnify the good rather than embellish the darkness.

I hope you will cherish these gifts I whole-heartedly give and will find them enough for now.

With Love and Gratitude,


Friday, September 13, 2013

The Alternative To Asking "Why Me?"

Bleary eyed and barely yet aware, I was coming out of an unexpected nap yesterday with sounds of the "Katie" show playing from the TV in the background.  Katie Couric was doing a show about Aimee Copeland, who after an accident over a year ago underwent multiple amputations.  I suddenly heard something that quickly yanked me back into consciousness.  Aimee's mother was discussing the inevitable question of "why did this happen to Aimee and not one of her friends", and she said Aimee's response to this question was, "I’m glad it happened to me. I know I can deal with this better than they could."

Why did this jolt me so quickly out of my sleep?  Because I have said that same thing before! As much as I wish I didn't have dysautonomia, I would rather be the one dealing with it because I know I can.  Hearing someone else have the same connection to their life-given challenge was oddly comforting.  While I can't begin to understand what Aimee has gone through, I felt a strong connection to her listening to her speak.  While our struggles have been different over the past year, it seems we are both fighting through with the same philosophies.
Image from backinskinnyjeans.com

So, why me? Why you?

Because you can handle it. You have the strength and perseverance necessary; God made sure of that. I truly believe you can find or create good out of your struggles and challenges.

When it comes to finding purpose, keep in mind your intended purpose through these sufferings won't always equate to world-renowned acts or achievements. If they do, great! But no matter how small or grand the ripples of good you set in motion, they will always be extraordinary and for a beneficial purpose.  You may not always know the effect you make on the world around you, but be certain you are making an effect.

The challenge I leave you with: Next time you feel the "Why me?" question trying to burrow its way into your thoughts, see if you can find a way to turn it into "I'm glad it's me!"

Monday, September 9, 2013

I Choose To... Focus On The Positive!

Today kicks off National Invisible Chronic Illness Awareness Week. The theme this year is "I choose to... (fill in the blank)". While no one with an invisible or chronic illness has chosen that challenge, we all still have the power to make certain choices for ourselves.  Today, I choose to focus on the positive.

If you ask anyone who has a chronic or long-term illness, it is probably very easy for them to list the ways their condition has limited them and what it has taken from them.  There are countless ways POTS has affected my life in negative ways, but it is more important and helpful for me to focus on the positive things POTS has given me.

As I was thinking through what POTS has given me, I ran across this blog post by Michael Hyatt.  The questions he suggests asking amidst adversity are great.  They are all worth ruminating on and may help you find a more positive perspective.

10 things I have gained from being sick:

1. Greater compassion: Hands down I have never felt more compassion towards others going through illness or other difficulties than I do now.  There is an empathy and solidarity formed by first-hand experience.

2. Capacity to appreciate the ordinary: The simple things, even the ordinary or perhaps mundane parts of life, have so much more meaning to me.  I never used to think much about taking a shower every day, sitting up in a chair or moving through my day without giving a second thought to what my heart was doing with each movement I made.  But now, these are things I appreciate when I am blessed with them.

3. Better understanding of anatomy, biology and how my body works: I have always been more into words, language and writing than math and science.  When you are faced with a syndrome that encompasses so many internal systems and symptoms, you have no choice but to become an expert on how it all works and fits together.  I now enjoy the new things I will learn and the connections I will make during my appointments with my ND, which are as much about treatment as they are about education.  Having a better understanding in these areas also allows me to have more intelligent, productive conversations with medical providers.

4. More time with my family: When you can't work and have to move back in with your parents at the age of 30, it can feel like your life is going backwards.  However, I have really liked being able to spend more time with my family.  It has been especially great to be closer to my baby nephew and see him on a regular basis.  There is nothing more uplifting for the spirit than an innocent, sweet baby.

5. Deeper faith: Ultimately your spiritual journey is what this life is all about. My faith in God has become much deeper and stronger since becoming ill. This is something I would never trade away.

6. Ability to connect with wonderful people around the world: There are a few things in life that I consider universal -- smiles, laughter and suffering.  There are people all around the world who are struggling with chronic illnesses just like me.  Through online support groups, blogs and social media, I have been blessed to connect with some amazing and inspiring people from all over.

7. More time to read and write: Since I am not spending all my time working and socializing, I might as well spend more time doing two things I love.

8. Greater commitment to nutrition and health: Nothing will make you care more about your health than losing it. I always considered myself fairly health conscious, but now I am discovering nutrition and health in a more holistic way. Wellness means so much more to me now, and I will fight to regain it and keep it throughout my life.

9. Relinquishing the need to control: There is no time you are less in control than when battling with your health. You don't get to choose your symptoms or good and bad days. I have always been a planner and goal-seeker.  While these are inherently good attributes, I was not always good at dealing with things I couldn't control. Being ill has demanded that I learn to let go and accept life as it comes. As a result, I have actually unlocked a greater strength than "being in control" ever afforded me.

10. Learning to trust my gut: Not only have I learned to listen to and trust my gut with regard to my health and daily needs, I have also learned to trust my gut in interpersonal situations. If I feel like there is someone I should reach out to, or something I should say to encourage, support or comfort someone, I no longer shy away from it or fear it might not be welcome. I accept that nudge as a sign that I am meant to act on my instincts.

What do you choose today?  What have you gained from struggles in your life? Please share in the comments below.

Tuesday, September 3, 2013

Coping with Chronic Illness

Today's blog post will be short and sweet.

I wrote an article for the health and wellness site, MindBodyGreen, which ran last Friday.  If you are struggling with coping, check out 7 Ways To Cope With Chronic Illness.

I also encourage you to peruse the other articles on the site.  There is a lot of great reading material.

Have a beautiful day everyone!

Monday, September 2, 2013

Soak It Up: The Benefits of Epsom Salt

Every day I soak my feet in Epsom salt. Epsom salt is a naturally occurring mineral compound also known as magnesium sulfate.  Right there in the name you can see that it contains two of the primary electrolytes: magnesium and sulfate. Epsom salt can be used as a soaking agent or can be ingested as a saline solution.  One note of caution, however, as I mentioned in the previous post, taking Epsom salt internally (or any source of magnesium internally) can have a laxative effect. You do not run this risk when you use it for soaking.

The most well-known benefit of Epsom salt is to ease sore, achey joints and muscles. In addition, the magnesium in the Epsom salt can alleviate muscle spasms. Basically, the Epsom salt will provide the same benefits gained from both magnesium and sulfate.  We covered magnesium in the last post, but what about sulfate?  Sulfates help form proteins in the joints and intestines and aid in detoxification.

I find soaking in Epsom salt really helpful and a low-cost therapy.  I don't suffer from muscle spasms as often, and it is a relaxing way to ease tension and aches at the end of the day. I definitely notice if I miss a day or two.

Admittedly a poor photo, but this gives an
idea of what I use to soak my feet.

How to Use Epsom Salt for Soaking

To use it for soaking in the bathtub, dissolve two cups of Epsom salt in hot water.  I know for most POTSies a hot bath is a no-go thanks to heat intolerance and vasodilation.  You can either wait for the water to cool down or just soak your feet, which is what I do.

To use it for a foot soak, I dissolve one cup of Epsom salt in hot water.  Instead of using the bathtub, I use a smaller plastic tub that is the perfect size for feet.  This way I can sit comfortably on the couch while I soak rather than teetering precariously on the edge of the bath.

Whichever way you choose, make sure to soak for at least 12 - 15 minutes. Also, if you want to get fancy or add an aromatherapeutic effect, you can put essential oils into the water. Epsom salt can be drying, so I would suggest using moisturizer afterwards.

Another option if you have a sore muscle that you want to target specifically, dissolve a cup of Epsom salt in a sink of hot water, soak a towel in the water and use the towel as a hot compress.

Have you tried using Epsom salt?  What benefits did you experience?  Let us know in the comments below.

Tuesday, August 27, 2013

It's Electric! The Importance of Electrolytes.

I know that I briefly mentioned the importance of electrolytes in a previous post about hydration, but this is an important topic that is worth looking at more in depth.  Plus, my POTS journey has been evolving and my relationship with electrolytes has changed.  While my personal approach has changed, I don't feel this discounts any previous tips I have provided on food or drinks that provide you with your high sodium needs.  I do believe there are times or stages of dysautonomia (especially in the beginning) where you simply can't function and need quick fixes.  If these traditional methods of salt intake and downing Gatorade are working for you, then please keep doing it.  If it isn't working for you, then you may want to consider trying a different route.

Comic from NatalieDee.com

Why are electrolytes so important?

Electrolytes are key components in hydration and cell function within our bodies.  An article by Dr. Lynne August explains that our cells act as batteries within our body and electrolytes are what recharge these batteries. (1)  When these batteries aren't able to work at their full capacity, it can cause or exacerbate issues with irregular heart rate, dizziness, muscle contractions and fatigue, just to name a few.

POTS patients tend to be more prone to electrolyte imbalances and depletion.  For one, many of us suffer from low blood volume (hypovalemia) and/or blood pooling, which is a contributing factor in low blood pressure and tachycardia.  The true marker of a POTSie diet -- increased salt intake -- is meant to help increase our blood volume and blood pressure.  In addition, the salt helps us hydrate as too much water, without taking in salt and other electrolytes, will flush the body of its electrolytes and cause further dehydration.

This is where the Gatorade, Pedialyte and Nuun recommendations come in.  I used to drink 32 ounces of Gatorade a day, but the amount of sugar I was consuming just through sports drinks always made me uncomfortable.  I kept reading that refined sugar was bad for your nervous system, which made me fear I was taking one step forward and two steps back.  When I shared these concerns with my PCP, she agreed, but didn't know what alternatives to offer since I didn't feel I could survive the day without Gatorade.  This is where my ND stepped in to help me find those solutions.

What are the primary electrolytes?

When we think of electrolytes sodium and potassium usually come to mind since they are prominent in sports drinks.  In addition to sodium and potassium, the other four primary electrolytes in the body are magnesium, chloride, phosphate and sulfate.

Sea Salt

Instead of table salt, I am now using sea salt exclusively.  Sea salt not only provides you with your sodium needs, but it is less processed or unprocessed (depending on the source) and doesn't include the additives of table salt.  As a result, sea salt contains trace minerals -- including traces of the primary electrolytes.  Even though the type of salt I am using has changed, my use of it has not.  I still generously salt everything I eat.

Personally, I have been using Celtic Sea Salt at my doctor's recommendation.*  This brand has no additives and is unrefined and unprocessed.  I really like the flavor it provides.  While it is pricier than standard-issue table salt, a one-pound bag will last me at least four months.

Electrolyte Drinks

Obviously, even if you choose to forgo sports drinks, you will want to make sure you drink more than just plain water to help maintain and replenish your electrolyte balance.  Sometimes I simply add a pinch of salt to my water bottle.  In addition, Emergen-C is a good way to add electrolytes to your water.  My doctor has me using Emergen-C MSM Lite* to keep the sugar intake low.  Aside from providing three of the six primary electrolytes, it also gives me my daily vitamin C for immune support and B vitamins for proper metabolism and energy.

 While I haven't used it, so I can't speak to its palatability or effectiveness, I did notice in researching for this post that Selina Naturally (the brand that produces Celtic Sea Salt) has an electrolyte powder.  This powder is sugar-free, gluten-free, non-GMO, vegan and contains all six primary electrolytes.  The nutritional facts and ingredients look good, so I plan on asking my ND about it during my next appointment.  When I am having a "POTS attack" or an especially weak day, I sometimes feel like the jolt from Gatorade is the only way out, so I would love to have a more potent, natural electrolyte mix for times when I am really struggling.


As POTSies, we talk a lot of about sodium, but I have found magnesium to be a very important electrolyte for me.  When I first got sick, I went to my PCP, and she ran a full workup to see what she could find before deciding which type of specialist I should try to see.  Based on my bloodwork, she suggested I take vitamin D and magnesium supplements.  In the beginning my muscle twitches, tremors and tachycardia were constant.  I was not diagnosed or on prescription medications, but I would notice if I was extra shaky or my tachycardia was out of control, my system would calm down to more bearable levels shortly after taking 250 mg of magnesium.

According to an article by Dr. Christiane Northrup, magnesium is essential for over 300 enzymes in the body which work to "produce, transport, store, and utilize energy".  Some of these functions include protein synthesis and vascular, nerve and muscle health. (2)

Supplementing by taking magnesium orally is one option, and something I still do from time to time when I am extra "shaky".  If, with your doctor's support, you are supplementing with magnesium, it is best to take smaller doses at different times of day as magnesium can have a laxative effect in large doses.  For daily therapeutic effect, I soak my feet in an epsom salt bath. (I will do a separate post all about epsom salt later this week.)

Making a point to support your body's electrolyte balance may not be a cure for POTS or other chronic conditions, but an imbalance can certainly contribute to your symptoms and feeling unwell.  As Dr. Lynne August said, "Use a chronic condition as an indicator light on your dash -- it's time to cultivate health, starting with charging your cell batteries." (1)

And since the "Electric Slide" has been running through my head the entire time I was writing this...


(1) HYDRATE..., by Dr. Lynne August

(2) The Magic of Magnesium: A Might Mineral Essential to Health, By: Christiane Northrup, MD

* These products are mentioned based on personal experience.  I have not received compensation to include these brands in my post.

Thursday, August 22, 2013

A Spoonful of Cacao Helps the Medicine Go Down

Diet and nutrition are the building blocks of healing.  Yes, I am taking a lot of supplements for my symptoms and issues, but creating an environment within your body that supports and encourages wellness is really important.

During my first visit with my ND, she asked, "How do you feel about smoothies?"

"I am pro-smoothie," I replied.

Enter my new daily breakfast.  There are many, good-for-you smoothie recipes out there, but my daily smoothie is a concoction of a few health products by my doctor's recommendation.  The main idea is that the smoothie is an optimal combination of protein, carbs, vitamins and minerals.  It is basically like drinking my multi-vitamin.

The best part about starting my day with a smoothie is it helps me enjoy breakfast without having to force-feed myself.  Thanks to POTS I always find it hard to eat in the morning due to nausea, but I know not eating just perpetuates the problem.  Drinking my morning meal is much easier on my stomach and digestive system.  It helps to prime the well for the rest of day.

The basis of my smoothie is a product called PaleoMeal.  It is available in various flavors and also available in a dairy-free variety.  My body hates dairy, so I use the dairy-free version.  Personally, I like the berry flavor over the vanilla flavor.  The vanilla has too much stevia in it for my taste; I am not a stevia fan.  I will admit, just mixing the powder directly into water or milk isn't all that tasty.  When I mix mine, I blend it with a banana, unsweetened almond milk and water.  One other POTSie bonus about the PaleoMeal... 400 mg of sodium!

In addition to the PaleoMeal, I mix in SpectraGreens and Natural Health Fruit Anthocyanins.  (I believe these two products are only available through licensed health professionals.)  I forget the exact ratios of how many cups of vegetables and fruits these add to my smoothie, but basically it ensures I get my daily needs in this area. That does not mean I am done eating fruits and veggies for the day.  Remember, I think of this as my multi-vitamin, not a pass to eat whatever I want for the rest of the day.

The great thing about smoothies is you can get creative with them.  I could add more fruits and green veggies, sometimes I add ground flaxseed, or I could even add some almond butter.  This morning I added raw cacao powder, and it was such a great treat!  I am not sure how I lived this long without it.

I had been reading a lot about the health benefits of raw cacao lately, so when I saw some at my local health food market I grabbed a bag of it.  This stuff really packs a lot of nutrition: magnesium, iron, potassium, antioxidants and fiber.

Obviously, if you don't have access to the products I use for my smoothies or want to take a more basic approach, that's not a problem.  You still might find that whipping up a healthy smoothie in the morning is a helpful start to your day.

If you are looking for some healthy and creative smoothie recipes, check out deliciouslyella.com!  Ella has wonderful recipes and great photos.  (You should also follow her on Instagram and Twitter.)  She is a fellow POTSie in London who has been helping her body heal through nutrition and natural means.  Ella is such an inspiration, and I hope I can find as much success as she has on my own natural journey to wellness!

Tuesday, August 20, 2013

Be Kind to One Another

Illness is hard. I mean, really hard.  It assaults every fiber of your being... physically, emotionally and mentally.  Invisible or visible, it doesn't matter.  Suffering is suffering.  Ideally, no one would have to struggle with and feel the pains of illness, but unfortunately that is not the reality of our world.

On the plus side, however, illness gives everyone involved -- the afflicted and their friends and family -- a chance to put love, mercy, faith and compassion into practice.  Really when it comes down to it, those four things are the essence of life.  We should embrace the chance to allow them to flow out abundantly from ourselves unto others.

Personally, being ill has honed my recognition of love, goodness and beauty in the world and the people I encounter.  I'm more reflective.  I see people and situations differently.  Even people I know well, I feel myself caring for them more deeply and seeing their true beauty shine through.

It is very true that illness will show you who your true friends are, and not everyone will make the cut, but those who do stand by you will become all that more dear to you.  While I have certainly felt the hurt of being sick in a healthy person's world, and I can tell some people don't "believe in" my symptoms, ultimately I have had a group of friends really stick by me and try to understand.  They will never know how much that has meant to me and how much I love them for it.  Additionally, my family, especially my mom, has been so amazing and loving.  I know that they have my back and will stand by me, even when it is hard on them too.  Yes, I am so very blessed.

What really breaks my heart are all the stories I hear from fellow POTSies whose family is annoyed with them or don't believe in their illness or friends who disappear because "they aren't fun anymore".  There are numerous stories of eye rolling, passive aggressive comments, or physical and emotional abandonment. This really and truly saddens me that anyone would be treated this way.

So for any doubters out there, let's set the record straight...

POTS is real. It is not anxiety.  It is not hypochondria.  It is a true syndrome with an unpredictable onset of symptoms, pain, exaggerated physiological functions and daily inconsistencies.  Many of the symptoms, while not life threatening, are very scary and often mimic life-threatening events.  Please believe your loved ones and trust that they understand their own body.  Even if you can't truly understand what someone is going through, offer them compassion and don't try to invalidate their illness or their limitations.  We are entrusted with people in our lives to take care of each other, so please accept that responsibility for those around you and be kind to one another.

Let us all try to make a concerted effort to keep those who are ill or struggling in our thoughts and prayers and reach out to them.  I can tell you from my experience that there is no greater renewal of hope than a card, visit, text, email or phone call from a friend.  It keeps me going and gives me a reason to laugh, smile and know that I am still a part of the world around me.

See the resources below if you know someone with Dysautonomia/POTS and want to learn more:

DINET: Dysautonomia Information Network

Dysautonomia International: For Family and Friends

POTS - Together We Stand: Riding the Waves of Dysautonomia [Book]

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome [Video]

Medical Journal Article by Dr. Blair Grubb

Wednesday, August 14, 2013

Giving the Natural Route a Go

I guess I took another blogging sabbatical.  As usual, it was POTS' idea, not mine.  Oh well, let's dust ourselves off and get back to it.

Integrative medicine.  Holistic medicine.  Naturopathic doctors.  I know these phrases may make some skeptical or uncomfortable, but I have to say, I am becoming a believer in these alternative options.  Of course, as with anything, there are probably some quacks out there; but let's be honest, I have felt that way about some of my Western medicine doctors as well.

I began going to an ND in May of this year.  I was originally referred to her by my PCP, who dabbles in holistic medicine.  My PCP wanted me to go for a nutrition consult, since my vitamin deficiencies were a wreck, and my symptoms were all over the map.

Since I was a new patient, I had to fill out the health history forms, mark down my symptoms, diagnoses, etc.  I walked into her office, and she hit the ground running.  This was no longer just about nutrition.  She said it seemed pretty clear that I was suffering from adrenal fatigue.  Since that first visit, we have also began treating intestinal issues (which started up about 3 years prior to POTS), yeast overgrowth, chronic sinusitis and, most recently, gall bladder issues.  So she and I have a lot of balls in the air and of a lot of rebalancing to do in my body.  For anyone considering the holistic route, here are some things you will want to consider up front:

1. Find a doctor you can trust.  This is super important.  Do your research and trust your gut.  If you during your first visit with your ND, you don't feel comfortable and trusting, then find another doctor.  In my case, I like the ND I was referred to.  She immediately started putting a treatment plan together, AND she knew what POTS was.  My ND had been an MD previously, but then went back to school to become an ND.  For some reason, this makes me more comfortable with her since she has experience on both sides of medicine.  Also, she is so accessible and responsive.  I can email or call with any question or issue and have a reply within a few hours.  It is just a much more personal experience.

2. Be ready to put in the time.  Even with natural medicine, there is not a magic bullet.  Healing takes time, so you will have to be patient.  After 3 months with my ND, am I all better?  Nope.  Is my life still really limited?  Yep.  Have I turned some corners and made slow improvements?  DEFINITELY.  A few examples, I am off my side-effect-ridden beta blocker now... for real, and my BP and HR are stable more often than not.  I can spend most days sitting on the couch instead of laying on it.  My blood doesn't pool as severely or as quickly in my feet.  I can shower more than once or twice a week.  I can prepare my own meals.  Sure, these are simple things, but they are wonderful.

Aside from giving yourself time to heal and being patient with slow progress, the process itself is very time consuming.  My diet is pretty strict, which takes time and preparation.  I can't just go grab the first salty, processed thing I see in the kitchen.  In addition, I am on a lot of supplements right now.  I take about 48 capsules a day, plus medicinal teas.  This, along with eating on schedule, quite literally takes a lot of time.  Taking this approach to healing is a big commitment.

3. It is not cheap.  Nothing about this is cheap.  Between the doctor's appointments, supplements and "health food", there are a lot of out-of-pocket costs, which are not covered by insurance at all.  This is definitely a financial strain when there is no income.  But, honestly, none of my doctors who are covered by insurance have been trying anything at all to help me, so I feel it is worth the money if I am able to heal my body in the long run.  I mean, I spent thousands at Cleveland Clinic last year and that really only got me a diagnosis.

4. Be open.  You will need to open yourself up to a different perspective and to the idea that natural products and diet can be used as medicine.  The famous quote by Hippocrates, "let food by thy medicine and medicine be thy food" is really what this is all about.  But if it isn't something you truly believe in, it will be a waste of your time.  Also, be open to learning new things about your body and how it works.  My doctor is very good at explaining the process at work in my body with charts and diagrams.  I actually really enjoy learning in such a practical way... plus I am much better at answering biology and anatomy questions on Jeopardy now.

Have you considered taking the natural route or had any successful experiences with holistic medicine?

Wednesday, June 26, 2013

Who Needs Cedar Point? I Ride the POTS Roller Coaster.

I was going to write about a mighty little mineral known as Magnesium today, but I am too worn out to provide constructive information.  Instead I am just going to wax not-so-poetically on my week so far.

I am still trying to reduce my use of atenolol.  When I told my Naturopathic Doctor about my foray with propranolol, she said she really thinks that while my beta blocker is helping my tachycardia, it is exasperating most of my symptoms.  As of right now I have been able to go 2-3 days between having to give in and take a small dose, which is good considering last year at this time my tachycardia was literally constant with no regard to whether I was in a supine or upright position.  As of now the last time I took any atenolol was on Monday when my ANS practically cried over spilled milk... but instead of milk it was a dropped banana.
This isn't the banana that was
involved in the accident, but
rather another entertaining
naner I once knew.

I had already been having a tachy kind of day, with the typical HR jump to 126 when I stood up.  I was trying to make my breakfast when I dropped the banana on the floor.  My ANS immediately reacted like, "OMG!!! BANANA DOWN; BANANA DOWN!"  My HR jumped to 163 on impact and based on the intense pounding in my chest, I am pretty sure my heart was trying to escape my body. Of course, I laid down on the couch and within a minute or two my HR was back down to 88.  What an over-reactor... such a Drama Queen my ANS is!

Monday night however was a record-breaker.  Generally speaking I only get 3 hours of consecutive sleep at a time.  I refer to my night's sleep as a collection of naps, many times with spans of insomnia in between.  Tuesday morning I woke up for the first time at 8am.  I had slept for 6.5 hours at once!  It was pretty miraculous.  My BP was respectably sitting at the high-side of low, and I even had the energy to shower before noon.  Maybe I am cynical or jaded by POTS, but I have learned all too well that if my body randomly cooperates with me, it is about to punish me for it.  And punish it did!

After only 4 hours of sleep last night I woke up at 5:30am feeling really overheated and just weird.  I went downstairs to try to cool off and watch some TV, when the pre-syncope started to hit.  I threw myself onto the couch and called my mom on her cell phone to ask her to come downstairs and get me some Gatorade.  Of course at this point the shivering, shakes and chattering teeth set in.  When I took my vitals while I was laying there my BP and HR were both good, which seemed odd.  Then it occurred to me, it was my low blood sugar causing the attack this time rather than a crashing BP.  I spent the rest of the day feeling like total ick.  I even had to drink some root beer to try to get my body to bounce back better.  My ND would be mortified to know I resorted to HFCS.  Shh... it will be our little secret.  Here's to a better tomorrow!

For all of you out there riding this POTS roller coaster with me, just know you aren't alone.  Let's sit in the back and put our arms up when we descend the hills!

Wednesday, June 19, 2013

I Want to Ride My Bicycle. I Want to Ride My Bike.

Life with POTS is all about being paradoxical.  I'm overheated, but my feet are ice cold... My heart rate sky rockets, while my blood pressure plummets... I'm beyond exhausted, but I can't sleep.  Then comes the real kicker... you are too dizzy to stand or even sit up most days, but your doctor wants you to exercise.  According to a heartwire article about research done by Dr. Benjamin Levine, exercise helps to improve "upright hemodynamics, normalizing renal-adrenal responsiveness, and improving quality of life in patients with postural orthostatic tachycardia syndrome (POTS)".*

I understand fitness, and my workouts pre-POTS consisted of hitting the park or the treadmill for a 3-mile run.  POTS is a game-changer though.  My body and heart no longer work or respond the same, so just pushing through a standard workout isn't the answer.

I was referred to the cardiac rehab program at Cleveland Clinic.  The head doctor and the exercise physiologists in the rehab department are great!  You can certainly do your exercise training at home if insurance, money or location/transportation doesn't allow you to work with a professional.  However, I would highly recommend at least consulting with a cardiac rehab program if you can.  They helped me plan a course of action and determine my optimal heart rate targets for my current condition.

8 Tips for Working Out with POTS:

1. Start slow! Obviously there is a certain amount of mind over matter in all of life's challenges, but the typical athletic mantras of "just do it" or "no pain, no gain" aren't applicable to reconditioning with POTS. Don't try to do too much too fast.  Even if you can only do a few minutes at first, that's ok.  Just build from there at a pace you can handle.

My HRM even knows to wish me Happy
2. Use a Heart Rate Monitor. There are various heart rate monitors on the market from basic to those with more advanced functions.  My exercise physiologist told me the Polar brand with a chest strap was reliable and accurate so I bought a Polar FT4 from Amazon.  I love it!  Not only can I make sure I am not pushing myself out of my prescribed heart rate target, it is nice to see when a certain exercise intensity and duration is becoming too easy.  This helps me gauge when it is time to move to the next level.

3. Monitor Blood Pressure.  During cardiac rehab they would take my blood pressure reading before and after my workout and once during.  This isn't as easy to do on your own, but if you buy an at-home blood pressure cuff, you can at least check it before and after.  Keep track of these numbers along with your heart rate readings so you can monitor progress.  Remember if you are suffering from low blood pressure after your workout, elevate your feet while you recover and get some salt in your system.

4. Hydrate. Back in my running days, I would workout for 30 minutes or so and not even think of drinking water until I was done.  Not any more.  It is really important to drink water before, during and after your workout.  It helps me fight off my heat intolerance, dizziness and unstable BP while working out.  We just simply need more fluids as POTS patients, and it doesn't change during our workouts.  If you use electrolyte drinks, definitely include them during your workout routine, or at least add a little sea salt with your water.

5. Wear Your Compression Socks.  I am not always good about wearing my compression socks around the house, but I will not workout without them.  You want to keep your blood from pooling during your exercise as much as possible to help support you from losing to your orthostatic intolerance.

6. Keep Cool.  If you suffer from heat intolerance like me, heating up during exercise can induce lightheadedness and wear you out fast.  Make sure you are wearing cool, breathable workout gear.  I advise sticking to shorts and tees or tanks.  When it comes to my exercise clothes these days, sweatpants and long-sleeved shirts need not apply.  I also make sure to use a fan and even a cooling neck wrap if necessary.

7. Exercise Recumbent-Style or Seated.  We already know that standing is tough on our vitals and causes increased blood pooling.  This means working out on a recumbent bike, rowing machine or on the floor is perfect for POTSies.  In cardiac rehab, I rode a recumbent bike before moving to the upright bike, and then finally I was walking on a treadmill.  If you don't have access to a recumbent bike, doing stretching and strengthening exercises seated or on the floor is a great at-home alternative.  I downloaded a 20-minute workout from Exercise TV on iTunes.  It is called Gentle Pilates and is a floor workout.  Some of the warm-up is done standing so I either skip it or try to modify it while sitting on the floor.

8. Be Patient and Don't Get Discouraged.  You are not going to get stronger overnight.  Even though I was able to build up to walking on a treadmill at a healthy clip for 45 minutes, it took months for me to reach that point.  There were lots of hurdles and setbacks along the way.  Nothing about it was easy.  There were days I had to stop early or leave rehab in a wheelchair.  If at first you don't succeed, try, try again.

Some closing motivation by Queen... 

* Taken from http://www.theheart.org/article/1241927.do

Monday, June 17, 2013

Just Like a Pint After a Long Day

You know that feeling you get after a long, stressful day when you sit out on a patio somewhere and take that first sip of an ice, cold beer... you feel your shoulders relax, and the tension just melts away.  Well I was reminded today how a little bit of beta blocker can have that same effect on me.

Maple beer from 3 Brewers in Toronto during my pre-POTS days.
The trial of only using my beta blocker as needed didn't last long.  Saturday afternoon I tried just 5 mg of propranolol when the palpitations became bothersome, and my resting HR was 102. The result?  Well my HR went down, but my blood pressure dropped too much.  I got a killer migraine and was experiencing pre-syncope while lying down.  I felt miserable.

After Saturday's debacle, I felt pretty rundown on Sunday and tried once again to avoid using a beta blocker.  That ended today at 5:30pm, when I was tired of the tachycardia and had an HR of 145 just from standing up.  I went back to my tried and true atenolol, but only took a quarter of a pill to try to walk the line between my HR and BP.  About an hour later, I felt like I had just taken that first sip of frosty beer.  The tachycardia was gone, and I could stand without feeling like I was about to launch into space.  It was sublime.

Moral of the story: My beta blocker and I need each other... almost to the point of wanting to doodle my beta blocker's name on the cover of my notebook.  Amy + atenolol = 4 Eva

Saturday, June 15, 2013

Unintended Hiatus

My poor blog has been neglected.  It has been a crazy few months.  Starting at the end of February, my POTS was in a major flare.  By the end of March I was undergoing various tests and was back on medical leave from work.  It seems like every week there was something else keeping me couch-bound.

I have a lot of updates with regard to the direction my treatment has taken, but I don't want to list them all in this "grand re-opening" post.  One of the biggest changes is that I am now seeing a Naturopath Doctor in addition to my MDs.  I will post soon on what that has been like and the direction she is taking with my treatment.

Another medication allergy...
won't take that again!
I did go back to my cardiologist on Thursday though.  My blood pressure has been super low lately, and I had been forced to lower my beta blocker doses on my own, while I waited to be able to get into him.*

After our visit on Thursday, he decided we should try stopping the beta blocker and see how it goes.  He did give me a propranolol prescription for use as needed.  I haven't taken my atenolol since Thursday and have not had to resort to any propranolol yet.  I have definitely been having palpitations on and off, especially today, but I am trying to reserve the propranolol for when I feel like it is beyond what I can handle or for full-blown tachycardia.  As of now my HR is sticking to the 80s and 90s, so that has been bearable.

I don't like to post without a photo if I can help it... just text looks boring to me.  It is an occupational hazard of having worked with multimedia for many years.  The photo I included is from my last ER visit in March.  I was in my PJs and slippers when the ambulance came to pick me up... wearing slippers instead of shoes to the hospital is not recommended.  It is all fun and games until you're discharged and walking around the hospital in slippers... filing this experience under "Things POTS Has Taught Me".

* Obviously this is a good point to remind people that you should never change medications or doses without your doctor's buy-in.  However my doctor has trust in my understanding of my medication and my condition.  He has given me guidelines in the past about what I can and can't do, and at what point I should call him.