Surviving Summer With POTS

Tips to Stay Cool in the Heat

. Use a small motorized fan combined with a misting bottle. These can be found at Aldi, Walmart, Amazon, etc.

.There is a mini fan that is USB powered and can be plugged into your smart phone. These apparently drain battery quickly. DeAnna suggested plugging the fan directly into a portable charger.

.Bring a big hat and sunglasses, and most importantly, a water bottle everywhere you go. I find it easy to carry a reusable heavy duty plastic bottle, but there are endless options for this at most stores.

.If you are going to an outdoor event, bring a folding camp chair or stool.

.Make sure you are drinking the recommended amount of water and getting the right amount of salt each day. Drink extra if you know you’ll be out in the heat a long time. You can add Nuun tablets (check to make sure you get the kinds without caffeine first if you don’t use it), Banana Bags, or even a homemade mix to boost your salt/potassium intake.

.Wear compression garments. Dr. Muldowney suggested to me to wear Spanx or something similar in the summer as they give waist compression without being long. I have a link to the Spanx sight, but there are less expensive brands at Target and similar stores.

.If you can, start your car ahead of time and get it cooling off. Put up sunshades to keep the car cooler when you’re out of it. Roll the windows down for the first few minutes to let the heat escape if it isnt’t already cool when you get in.

.Go swimming! It’s excellent exercise for us and it keeps you cool.

.Plan ahead, as much as possible. If you know you have a long day ahead of you in the heat, pre hydrate. Pace yourself the day before. Have a bag packed with water, snacks, medicines and whatever else you might need.

. Advocate for yourself. Ask your doctor for a handicap tag if walking across hot parking lots is too much. Get a medical note stating you have to be allowed to have liquids with you. Look into disability seating at concerts etc. Use a wheelchair if walking gets to be too much. This can be intimidating, especially at first. Please ask any of us in the group if you would like some help/advice with this.

The links I provided to products are just examples and most products can be found other places.

We hope you all have a happy, safe, and fun summer!


Let Her Cry

60 different doctors. I’ve seen 60 different doctors in the last two years. I know this exact number from an entire day of pouring over medical records with my mom for divorce dribble.

Today I saw yet another new doctor. In the middle of the appointment I broke down in tears and could not stop crying. The doctor and the fellow in the room were the epitome of kindness. They handed me tissues. They told me how anyone who’s been though what I have recently would be feeling how I do.

I learned I have 4 new syndromes this week. They all tie into POTS. I’m tired. I’m tired of going to the doctor. I’m tired of learning about new conditions. I’m tired because chronic fatigue syndrome is a reality. I’m tired because I can’t sleep without medication and I refuse to take it every night.

Doctors like I saw today make this all a little less exhausting. Thanks for letting me cry.

The Semantics of Moving Forward

Last summer I remember asking my dad when I should stop saying "my husband left me", and simply saying "we are getting/got divorced".

I forgot even asking my dad about this until recently. I simply responded robotically to inquires about marriage or dating with "my husband left me" and most of time for good measure, throwing in "a month after my POTS diagnosis."

I'm going to tread carefully here. I care for people who have been victims, victims of any sort. I'm sensitive to people victim blaming, bashing people for having a victim mentality, or similar issues. I also don't intend to be the basher myself, as I know I was part of the problems in my marriage (I accept 100% of my 5O%.). And it's tactless to absurdly bash someone on the internet whose grandmother still occasionally likes your Facebook posts.

When you've been hurt as badly as I was, and you are the kind of person who derives comfort from sharing with others, it's difficult to refrain from shouting off your rooftop about what injustices you went through. I haven't actually climbed up to my roof, but I have come incredibly close. I needed people to know how wronged I had been.

If you're in my life and care about me, you know my husband left me a month after my POTS diagnosis. You know the heartaches I have been through. You probably don't need to hear the story for the 96th time, though I'm sure you would. And if you're a person in my life who has heard falsified versions of what happened, that's not my business. I can't control what you believe. It doesn't matter, anyway.

It's time to stop saying my husband left me, and start saying I'm divorced. "My husband left me" keeps me as a victim to circumstances I cannot change. I am tired of feeling powerless to a man I haven't seen in over a year.

Today when a new doctor asked me if I was single or married, I just said divorced. I actually winced out loud as I said it. I wanted to tell him how my husband left and it crushed me and it made me getting better so much harder. I just said divorced. And instead of the doctor having to tell me how so so sorry he was and how crappy of a thing my ex did and on and on, as caring people do, we simply moved on to talking about my heart surgery as a toddler and my joint pain. It was a relief to not have to accept someone's sympathy. I can't believe it felt that way, but it was oddly empowering to not have to say anything at all about it.

My ex-husband is inextricably linked in my mind to my chronic illnesses. We got married because I was suddenly sick and he wanted to take care of me. We went through some of the worst times of my health together, when he was the only person I knew in a brand new place.

He was a part of my sickness. But there's no space for him in my healing. He doesn't get to be a part of this journey anymore. I know getting better means getting him out of the story from now on. I haven't been ready until now.

I know grief is unique and I'm not judging myself or anyone else for how they get through misery. I'm ready to move forward without ghosts holding me in the past.

How To (Actually) Help Me Get Better. Part 2

Here are some things I and others have found helpful in battling our bodies. And brains.

Simply ask, hey, it seems like you’ve had a bad few days. Can I do anything to help?

Offer to come over and watch a movie at my house.

Send me a funny meme, text, or email.

Research POTS. Read blogs of people who are chronically ill. Educate yourself as much as you can. It not only raises awareness, but also puts you more into the shoes of those suffering.

Encourage me to keep up the hard work I’m doing.

Try to understand if I have to cancel plans at the very last minute. My body is unpredictable to me on my best days.

I don’t mind hearing about what you’ve read can help POTS. I’m always happy to learn more! Just don’t beat me over the head with it.

I’m fortunate to have dozens of friends and family members who do all this and more. I’m touched by the tiniest acts of kindness, like when my sister cooks extra salty food when I’m coming over. I’m touched by encouraging Facebook comments and friends who listen to me cry.

Thanks to everyone who helps me in their own ways. I couldn’t do this without you.

How to Help Me Get Better (Part One)

When do you cross the line between good intentions and mere intentions for another purpose all together?

I have a friend who cannot seem to stop themselves from telling me how to get better. I'm going to call this person Sue, because my purpose of posting this isn't to shame them or bash them. It's to inform people how to truly help me (and I'm sure others) heal. But I can only speak to my own experience.

Amy Poehler coined in her book "Yes, Please!", a beautiful phrase. Good for her, not for me. Oh, you breastfed your baby for 2 years and only let your kids eat vegan kosher food? Good for her, not for me. You want breast implants? Good for her, not for me. You go to hot yoga and it cured your ulcerative colitis? Good for her, not for me. It sums up the idea so succinctly that what can work well for another might not be right for you. And we can all be ok with that.

Or most of us can be ok with that. Sue, however, it seems, cannot be. According to Sue, I have GOT TO stop drinking Diet Coke because it's actually devil juice masquerading as seriously one of the only ways I've found to battle my fatigue, not gain weight, and actually enjoy what I'm drinking. I don't know how many times Sue has told me to stop drinking Diet Coke, but I'm done hearing about it.

Sue also dropped in this bomb of a conversation how if I only believed there was a cure for POTS I could be cured. If only I quit my sin of a Diet Coke habit, cut out processed food, thought more positively, stopped relying "only" on medicine, kept up my exercise routine, and read a book on Reiki healing practices, I would indeed be free of my incurable illness. If I did these things, I could be such in an inspiration and positive voice for others suffering.

Really, Sue? WT actual F. I'm not sure when Sue went to medical school and became a specialist in dysautonomia. I'm not sure when Sue stepped into my body and felt the pain I push through every single day of my life, physically and emotionally. I am healing. I am an inspiration to people. I know this because I've been told. But it's not my job to be positive. In fact, the people who have inspired me the most in life are vulnerable, honest, and imperfect in their trials.

What Sue implies to me by making the statement I could go back to my previous POTS free life if only I did insert list above, is that I am not doing enough right now. If only I did a little more! Tried a little harder!

I'm doing all I can. I'm doing what's good for me, not for her. And that's enough. Don't ever let people tell you it's not enough.

Watch Your Words, Bro

A few weeks ago someone I know posted on their Facebook wall a two part picture. In the top it says, "This is an antidepressant" and depicts a jogger trail running, and the bottom says "And this is a lifetime addiction", with a depiction of pill bottles.

I was pissed off. Enough to unfriend him, which I never (ok hardly ever) do. This young gentleman is a retired Special Forces Officer. A West Point alumni. A hero to many. I think of all the friends he has who must be veterans. Who might have PTSD, or depression, or any number of conditions. I think of the people he must know who can't actually physically run through the woods anymore.

How dare he? I've dealt with depression on and off throughout my life. (On, right now.) And while my own father is a psychiatrist who literally prescribes these pills in question for a living, and I'm a therapist, and I have friends who are psychiatric nurse practitioners, and my family have been nothing but supportive of whatever pills I have to take for whatever dozens of conditions I have, his words still stung me. What I wouldn't give to run through the woods. To be able to run at all. To feel happy and balanced without an antidepressant.

But I can shake the sting because of everything I just mentioned. I think of his veteran friends who were taught never to cry, never to ask for help, that pills are for pussies, that PTSD is for the weak. Really, I've heard other Army officers say this. These people can't shake it off. They look up to him, and he's telling them not to get help.

Another veteran friend of mine posted recently , bravely AF, that he was depressed and had checked into a psychiatric hospital for help. Thank you. Thank you so much for the boldness to stand up against Special Forces Bro and military culture, and our entire society and say I need help for something I can't control, and that's ok.

It's ok to not be ok. I say this to myself as much as others. I feel the pressure that I know so many other chronic illness sufferers do. The pressure to be an inspiration. To be positive. To see the bright side. It's a constant balance to be real with myself and others, and to maintain the strength to keep going with some sort of light.

So before you post something thoughtless on your Facebook wall or make an off-handed comment about pills, watch your words bro. They matter.

The Audacity to Date

Yesterday I had a "friend" (I'm not sure what he is anymore, it's complicated), tell me I shouldn't date because I need to work on myself more. I think my mouth actually fell open.

I should, according to him, have my own place, have a job, and let more time occur post divorce. I should figure out myself more. Then I can date. I wanted to scream. I wanted to cry. And I did. Really, I wanted to put on my all caps lock and scream at him via text.

There was a time I thought I shouldn't date until I had accomplished all the above mentioned goals, too. I should be more independent! I should have a job! Who wants to date a sick 30 year old who lives at home? But there's a new bottom line in my life. Success with chronic illnesses doesn't look like success for healthy people. And let's be honest. Success looks different for every individual. Regardless of health.

I may never live alone. (I thought I was maybe getting close.)Then I had the eye opening experience of passing out in my hotel alone , waking up in my own pool of blood, vomiting up my entire undigested dinner, and being so disoriented I climbed right back into bed. I woke up to a pillow sopped with blood. I'm lucky nothing worse happened. Really lucky.

Maybe I can't work full time. I just don't know. I don't have the fortune of knowing what my life looks like tomorrow, let alone next month.

As for working on myself…ha! It's been over a year. I've gone to therapy. I've gone to more therapy. I've journaled, I've prayed, I've been partially hospitalized. I've bared my soul. Confronted my own demons. I've gone back to school and finished with a 4.0. Of course I still need to work on things. And I am. I relentlessly pursue getting better.

Living on my own, working at a great job, being in a perfect emotional place, they don't define me. I've been pretty lucky to find a guy who doesn't think those things define me either. I'm funny. I'm kind. I care about people. I fight like hell to live life everyday. I'm a freaking warrior. There's more to offer someone than your own apartment.

I'm allowed a life outside my illness. I'll be damned if I won't live it my way.

The Strength to Carry On

I don't take two steps forward and one step back. I take half a step forward and 15 back. All of us chronic illnesses sufferers do.

After finishing my school program, and feeling proud, relieved, and over the moon, I fell. Hard. After 3 weeks of following the toughest exercise program I've ever done, dutifully, on vacation and in hotel gyms, I fell. I have a concussion. I have a gash. I have a never ending headache. I have brain fog like I've never had. My whole body aches and has been for weeks.

I just feel like I'm getting over this seemingly endless streak of illness, depression, and bad luck (I'm not sure what else to call it). And then a fall happens. Or a med change. Or massive weight gains from said med changes. Or I find out my ex husband who has been living a glorious 600 something miles away has moved back to town. To my town.

Days like today I want to give up. I don't have positivity left. I don't want to keep going in a life that seems to continually kick me back down. But I do keep going. I will keep going. I don't know where the strength comes from, and frankly, I feel zero strength today. Days like today, all that matters is to keep breathing. Another day will come. Maybe I'll workout and feel happy and see friends. Or maybe I'll be depressed and cry and do nothing. Either way, I just keep breathing. It's all you've got to give somedays. And that's ok.

Lessons from a Year with P.O.T.S.

A year ago today I was diagnosed with P.O.T.S. Throughout this journey I have learned an extraordinary amount about myself and others. Here are a few of them.

  1. Some people you thought loved you will not be able to handle your illness. These are not your people. People you knew loved you will love you harder than you knew love could be felt. These are your people.
  2. P.O.T.S. is a funny acronym and a funny syndrome to explain. I will find myself saying things like “Uh, I have this weird illness where my autonomic nervous system, that’s what controls all your involuntary functions like breathing, heart rate, and digestion, malfunctions.” Blank stare.
  3. I can pick up almost anything with my feet. Bending over and standing up again gives me a pounding headache. You learn to improvise all kinds of things and change behaviors to avoid symptoms. Showering makes me pass out frequently, so I take baths. Sleeping with my hands above my head makes them fall asleep because of lack of blood flow, so I pin them at my sides. Getting ready for events is exhausting, so I break it into tiny chunks and take hours doing it.
  4. There are many people who do not understand my illness. These people range from strangers to doctors. It’s best to try and not get mad about it, but to see every seemingly misguided question or statement as a chance to educate someone about a syndrome not many people even know exists. Some of the most rewarding P.O.T.S. moments I have had involve someone telling me they think they or a loved one might have P.O.T.S. after hearing me talk about it. Most people wait 4 years for a diagnosis, so to possibly help speed this process up is awesome.
  5. Ask for help. And more help. And help again. This does not make me a burden. (I am still working on fully learning this last part.)
  6. My mom is a superhero. She is my caretaker. She gets up with me on rough nights. She gets my prescriptions and picks up food for me. I have never, not once, heard her complain about it. When I thank her, she downplays it and says she isn’t doing that much. Totally untrue.
  7. Every healthy moment is a cause for celebration, gratitude, and a quick little thank you to God.
  8. People you meet online in support groups will quickly become good friends. Who else is awake at 3 am? Your P.O.T.S. friends. Who understands when you just absolutely have to vent about fatigue, or pain, or doctors not getting it, or a unintentionally made hurtful comment? Your P.O.T.S. people. Sometimes, you have to “get it, to get it”.
  9. Salt. Gatorade. Water. Repeat, repeat, repeat.
  10. Having an “invisible illness”, looking fine on the outside, but feeling like you’re falling apart on the inside, drives home the lesson you really have no idea what anyone is going through who isn’t you. I think about this most in the grocery store for some reason. I look at each person and wonder what burdens they bear as they smile politely at you walking by. I think about how they have no idea how impossible it is for me to just get through a grocery store. We all have our burdens. Do not judge others when you don’t know the weight of what they carry.
  11. I am stronger than I ever imagined. I can handle excruciating pain and crippling loneliness. Life has knocked me over (sometimes literally) more times than I can count in the last two years. Someone always reaches down to help me back up, and I always find the will to stretch my hand out to meet them. P.O.T.S. is a huge part of who I am now. But it isn’t me. And it doesn’t win.

F is Also for Failure

Tomorrow I was supposed to have a second Tilt Table Test along with some other autonomic testing  (TTT). It is the “gold standard” of POTS diagnosis. The hospital asked me to stop all my medication 48 hours ahead of time. I didn’t really think much about it. Yesterday I woke up relieved not to have to count out meds and eat around certain ones and the general hassle taking some 15 meds a day brings. 

By evening I felt ill. And then sicker. And sicker. I got a pounding headache and was on the verge of throwing up for hours. The minutes ticked by. It became obvious around 1 am sleep wasn’t happening. I put on movies. I had my mom come listen to me cry. And hold my hand. Some people have husbands who do this. Some people have no one.  I have a mom. But I digress. 

When the morning came I realized in an “aha” moment I was having withdrawals from one of my meds, Cymbalta. It’s a drug you’re strongly encouraged to taper off of. There are horror stories online of people trying to get off this pill. Side effects of withdrawal are lengthy and scary. Suicide, rage, headache, palpitations, intense anxiety, insomnia, vomiting, and more! 

I couldn’t nap today. I am THE nap queen. My body was so done, but my brain would not stop. At one point I swore I knocked over a cup of water and it spilled on my iPad. I burst into inconsolable tears. But when I picked up my iPad, it was dry. My water cup, full. I full on hallucinated this. I don’t mean oh I kind of thought it happened. No. I was sure! This was one of the weirdest medical experiences I’ve had to date. 

By 9pm I just knew. I can’t do this all night. Holding my blue puke sack from the hospital and rocking back and forth in pain, I snapped. I am beholden to a tiny blue and white pill. With more crying, and crying, and a consultation with my in house psychiatrist (aka Dad), I threw in the towel. 

I quit. I took the damn pill. This means I can’t have my test tomorrow.  I’ll be able to reschedule. The testing isn’t what’s hard to get scheduled for. But that’s the thing. I’m always rescheduling. I’m always too sick. It’s forever “I’ll catch the game with you all next week!” I’ve left my house outside of medical reasons twice in almost 4 weeks. My mom has taken over all my Abby watching. Abby sort of stares at me blankly when she sees me now. She’s lost her playmate Rie, for now. 

I used to never stop. I used to never quit anything I started. I climbed ropes at the Army cross fit gym and I made my niece laugh and I was a social butterfly. Many moments I am at peace that life is different for me now, and I must measure accordingly. But days like today, I feel like a big, fat, failure. 

Even so, our failings aren’t a waste. I’ve learned I WILL safely get off this evil pill. And what I keep learning more of the longer I’m ill, is empathy. How people who are full on addicted to substances much stronger than Cymbalta manage to quit, I don’t know. But good gravy. You all are some badass warriors. I saw probably 1/100th of that pain and desperation today, and it destroyed me. Recovering addicts have always had my respect, but you have it millions more now. 

Somehow, I’m still awake. I’m rambly and hurt and am leaking tears involuntarily. It’s almost a new day. I can almost feel sleep coming. The sun will rise, and we will try again.