neuropathy – potsiemouth

Getting Married with POTS Part 2/2

In seemingly no particular order, here go:

Working Out
1. Worked out our entire engagement. Not for looks but so I could stand up during our ceremony (having a good workout regime is helpful in POTS recovery)
Having a Designated Personal Attendant
1. One of my besties who is a literal angel and nurse was instrumental getting me through the day. (yes healthy people have personal attendants as well. Everyone should imo)
2. She made sure I was drinking enough, eating enough, and using my CBD oil on a schedule. Again, she’s a nurse so she was ON IT and all with a smile.
3. She carried a bag with POTS staples like salt pills, nausea meds, and liquid IV.
4. Having someone dedicated to help me was great because expectations were established so I felt comfortable asking her for help when needed.
Dress Selection
1. We got married in September. I picked a dress that was light and airy to avoid overheating.
2. My dress had pockets, which were fabulous and functional.
3. Choose a dress you feel comfortable in.
4. Do not fad diet to squeeze into a dress.
5. No bonus points for wearing a dress that doesn’t fit comfortably.
6. Our health is uncomfortable enough, don’t add to it.
Shoe Selection
1. I wore really pretty lace up ballet flats and switched to the Kate Spade Keds for the reception. 10/10 comfortable the whole time
2. I did have compression socks on retainer if they were necessary
Emergency Chair Behind Altar
1. We hid a chair behind the ceremony backdrop.
2. Made a hand signal with my sister (MOH) so if I got sick she could just quietly get the chair without us making a scene. (I’ve also done this trick as a bridesmaid.)
Know Your Limits (its ok to share them with others)
1. I literally told the pastor the night before that if he didn’t finish within 10 minutes I was walking back down the aisle regardless of where we were in the ceremony LOL homeboy honored that time limit.
2. Most of the people knew my health limits so they were really respectful of talking to me while I was sitting or they’d keep any conversations held while I was standing, short
Explore IVs (check with your dr)
1. Getting an IV is the only thing that helps me feel any relief. (Again, can’t take meds due to adverse reactions.)
2. I looked up a mobile IV company and literally got one on site while getting ready which was a massive help.
3. It can be less expensive to go to IV company’s office (it was the difference of me making it through the day so it was worth it.)
Create Time and Space for Grace
1. We got married at my in law’s place. We had people make us our plates so we went from walking back up the aisle directly into his parent’s room to a little table set up and we got some time to chill by ourselves during cocktail hour.
2. I personally struggle eating when there’s a lot of commotion so I just took the time to be quiet and still (hyperPOTS= overstimulated=food not sitting right)
First Look
1. First looks are great in general but for me and my hyperPOTSie self, reducing suspense was a huge help. Less pressure. (The goal is to try and make your day easy for yourself)
Emotionally Pace
1. This is a huge day regardless of health status.
2. I requested those on my side giving speeches to keep it relatively light. With my adrenaline I can really struggle with big emotions making me more prone to adrenaline attacks which would literally ruin the day for me. (Again, personal preference.)
3. There is a super fine balance between enjoying your day to the fullest and sacrificing your health.
  1. Identify the moments of your day that matter most to try and pace yourself from exciting moment to exciting moment.
    1. Spread out the schedule if you think its too much energy back to back
Sweetheart Table
1. During speeches it was nice to just sit with my husband and not have to factor in anyone else.
2. Having space to ourselves was also great for managing inevitable overstimulation.
Try and Find a Safe Place to Take a Break
1. I snuck away 2-3 times with my personal attendant in tow during the reception to just take a minute to listen to my body’s needs.
Keep Yourself Fed and Hydrated
1. Every bride needs to hear this but you really need to go out of your way sometimes to make sure you are drinking the right amount and putting fuel in the tank
2. Eat smaller portions though as meals divert blood to the digestive system and that can cause some symptoms to come out and play
Go at Your Own Pace
1. This is your day. It is completely ok to take a break at any time.
2. If you need a mobility aid, you can still be a gorgeous bride! (I personally didn’t need mine because I wasn’t walking around all night but did take pics cause representation matters!)
Allow Yourself to Enjoy the Day, You Deserve it!

Photographer (Katelyn Rowan), husband, and personal attendant all on the same page here for my hydration break.

Getting Married with POTS Part:1/2

“Can I even have a wedding day with POTS?”

Absolutely!

This is a question I get pretty regularly. So of course I had to be extra and get back in my wedding dress and take some pics. Absolutely had too (lol jkjk).

First, you have to be in the right mindset.

For most of us, POTS (or insert your chronic illness here) came on suddenly. There is a life before our illness that we think back on often. We had a specific view of how our life would go and then we got sick. Suddenly, everything sucks. Everything is hard. Not just any ol’ human can hang with us. Finding someone who doesn’t just put up with your illness but actively commit to your health journey, is worthy of a true celebration. As exciting as that feeling is, the doubts start coming in. How do I even begin to negotiate everyday life? Let alone a day, a very high stress day. My wedding day. A day that even healthy people can struggle during?

The first thing we have to do is realize our wedding day may look different than how we used to imagine it. It is supposed to be our dream day after all. Not exactly fun to factor in a disability.

I wear contacts/glasses. I go to my optometrist every single year to make sure that my prescription is up to date and working for me. There’s no shame associated with it. It’s very quick. Very wham bam thank you ma’am. The doctor asks, “does one look clearer? or two? One? Or two?” I stress out that I may respond incorrectly despite the fact that there is no right answer. I literally just need to tell her when the lens works best for me. Having the correct vision is crucial to my everyday life so I want to make sure that I’m completely transparent on which lens works best for me. For…clarity, if you will.

Imagine if a friend came to you and told you they lied to their eye doctor because they were embarrassed about the severity of their vision. They wanted to fake better vision for their ego. No one else benefits from this by the way. There isn’t a trophy or a prize for using the wrong prescription. But there they are thinking they’ve won but really they lost. Think of the negative consequences: eye strain, headaches, potential accidents ,etc. You’d probably laugh a little at how absurd that is but then you would likely encourage them to go back to their doctor and get the appropriate prescription.

When you become chronically ill, you need to reevaluate the lens in which you’re viewing your life through. Routinely at that. Your pre illness way of thinking isn’t going to serve you well. We have to constantly take inventory and audit old thinking. Prior to getting sick, I wouldn’t view standing at an altar during a wedding as risky. Why would I? I never had an issue standing up before. However, looking at my wedding day with a new lens, one which accounts for my medical conditions, all of a sudden I had to view standing at the altar differently.

It is 100% ok to acknowledge and mourn our old lenses. Our old prescription for life. Sometimes I have to ask myself, “Is the vision I’m imagining through my old health lenses or my new ones?” Because if it’s through ol’ healthy-Mariah-lenses? Having an emergency chair hidden behind a wall behind the pastor and having a hand signal so if I needed my sister to grab it we could do so seamlessly, is going to seem like a devastating reality. However, viewing that circumstance through the lens of “this is the reality of my health and this is the best option for me” it seems much simpler to realize an emergency chair behind the wall could be empowering instead. Knowing we had the chair and a plan helped put me in a more relaxed state because we planned for my nightmare; passing out in front of a huge audience. Sitting in front of people>passing out in front of people.

Here’s what’s so great though, I almost needed the chair but we never pulled it out. No one even knew it was back there, aside from family and our wedding party. It wasn’t even a big deal at all.

My cousin who got married at her sickest with POTS? Both she and her husband simply sat together on a bench for most of their ceremony. No one was upset. No one thought it was weird. It was THEIR wedding day. Whatever THEY needed to have the best day is what needs to be done.

My MIL and the wedding planner we used were well versed in all the minutiae of a wedding day so we were able to view and plan the day around potential health needs. It was incredibly reassuring to have everyone on the same page. Looking back it seemed very manageable.

Part 2 of this post will be much more to the point (literal bullet points) the little backup plans throughout the day that allowed us to enjoy our day even if my health fluctuated. I just know it was helpful for me to have access to this mindset because it can be really easy to get overwhelmed and feel discouraged while planning because the deeper you dive into your planning, you’ll realize that there are traditional aspects of the day that may not work for you. That’s a tough pill to swallow. You may need to take it daily. Regardless, it is your special day. You deserve the most wonderful day. Give yourself grace. Don’t be so absolute in your plans that you self sabotage the whole day over something that could be addressed/avoided by simply giving yourself grace and adapting.

Part Two:Getting Married with POTS Part:2/2

Photographer: https://www.aisling.design/

The Good Days

We are the Greek myth of Daedalus and Icarus of chronic illness. Joy is my sun. Soaring too close to the sunny rays of joy is always my undoing.

“Managed joy” those are the words I landed on with my therapist.

My top 3 day of my life happened last year and the prolonged excitement kept me in bed for the better part of the next two months.

My husband has grown accustomed to monitoring it as well, which helps but can be tough to accept. He usually prompts me to take health inventory when I’m doing too much. We are the Greek myth of Daedalus and Icarus of chronic illness. Joy is my sun. Soaring too close to the sunny rays of joy is always my undoing. Sometimes I get so caught up in the happy, nothing else matters. In those moments I have to ask myself the hard questions, “is this worth a potential flare? Being in bed the rest of the week?”

I’ve said it once and I’ll say it again, it is incredibly hard for my personality and disability to coexist. With my POTS and EDS, I have to limit physical and social situations or risk burnout and knock my recovery off its axis.

Four years later and it is still so hard for me to accept that I don’t get to be the woman who goes on runs after a long day of work. I can’t have back to back social/physical happenings these days without large consequences. Now I can get an IV and prepare for these events (such as these photos you see here.) Nothing is without thought anymore. You know when you look down at the most used buttons on a remote? How faded they are. You didn’t notice the way it faded. It was done incrementally. One day you look down and you wonder “when did the symbol on this button wear off?” When was the last day I got to stand up without adrenaline and heart pounding? Even now it hurts to think that there was a final day around this time four years ago that I went about my day healthy. My last run. My last functioning day at work. Last time I left the house without needing a walker in my car. All these last times and I had no idea. When did all this become second nature?

These realizations are deeply emotional and can verge on painful. The memories of life before the chronic illness overtook are inviting and warm. They’re very hospitable, at first. They have cute clothes and fun nights in a big city. But if you stay in them you can get stuck. You can’t grow when you’re stuck. So you must move through it. Similar to when Frodo puts on The Ring in LOTR. He wears it to escape but the longer he wears the ring, the more danger he is in. It drains him. Burdensome. It isn’t until he takes off the ring and continues onward that he can really be safe.

I have had to learn through trial and error what amount of social/physical I can handle at given times. I have had to carefully set my health boundaries by way of being honest with myself and others. I can be a people pleaser and let me tell you, chronic illness is the best way to get over that. I have set expectations with those in my circle. Everyone is accommodating and extends grace (if they didn’t we wouldn’t be making plans anywho because that isn’t something I’d waste precious energy on.) Some of my friends have chronic illnesses as well and I truly treasure when one of us has to cancel due to health and the other supports and understands. No added stress. Just love and support. Nonetheless, monitoring the inconsistent physical and emotional energy can be a lot. But the days when all the boundaries and care pays off? When you get to have a good day?!

Well darling, we’re going to put on a fabulous outfit and go enjoy your day to the fullest… without compromising the next one, of course. We’re going to add in a health recovery buffer day (or 3) so in the event we have too much fun, it’s already been managed. One thing is for sure, we are still going to live our best life.

What do you like doing on your good days?

Photography by Alexa Lei

Self Storage

I came to the realization that I have been storing my old self in that storage unit like Vodlemort stored a part of his soul in Harry Potter. If all my old life is still in this unit, I can still go back to that life. It isn’t over. It.can’t.be.over.

When I first got sick in 2018, I bought a mini storage unit. We had no idea where life was going to take me at that point. Part of me was convinced I’d stay with my mom for two months, get better (LOL), find medicine that helped and then I’d go right back to my career and move in somewhere. Two months came and went. Two years came and went. My bed. My clothes. My belongings. My life. All quaintly tucked away in a little 5×10 unit.

I left in such a rush, my lovely sister and brother in law moved all my belongings into the unit for me. I had a general inventory of what was in there but over time you forget.

Everytime I would visit my sister, health permitting, she would take me to the unit so I could sort through my clothes and belongings to see if we could Goodwill anything. It was emotionally taxing. Especially my prized work wardrobe. It was everything to me. If I could just wear them again, everything would be fine. Getting rid of them felt too final. Everytime we went, I kept things even if it didn’t make sense because I was just sure I would resume my old life at any moment. My sister was always on the edge of pulling an Elsa and yelling, “LET IT GO”. It took me a while to come to grips with how debilitatingly sick I was/am. When you’re watching your new career pass you by. When you’ve paid off the student loans of a college degree you can’t even come close to using right now. When you’re realizing you can’t casually go on a run. When it feels like everything you’ve done to get where you got was all for nothing, you’ll hold on to anything. For me it was bags of beautiful horcrux skirts.

(I’ve got a lil pile in my sister’s garage now and we are one trip and a large suitcase away from having the transferable parts of my life on a plane.)

You know how when you’re driving and you miss a turn and the navigation system immediately begins recalculating? It searches for the best way to get you back on your original path. There are instances though where maybe the traffic or some circumstance won’t permit the U- turn your navigation suggests. At some point your navigation is going to throw in the towel and say, “rerouting”. It then proceeds to find your new path.

Let me tell you though, from experience? Much easier to reroute your gps than your life.

Most chronically ill people face that decision at one point in their health journey. Sometimes your “how do I get back to being healthy?” path turns into a “how do we live a meaningful life with this?”

I’m trying to have both of those paths coexist right now. Prayerfully hoping and working toward healing but also imagining life with POTS in varying degrees.You know what though? I have the ultimate safety net of a great God and I have the most amazing support anyone could ever hope to have. I know no matter how this pans out, I will be loved. Maybe, just maybe, letting go of yourself (no matter how fabulous) is how you find your new self. Dare I say it, your best self.

I am trying my best to make a space for this new Mariah. No matter what that entails.

Where are you metaphorically or literally storing yourself that’s preventing you from moving forward?

Photography : Alexandrea Leigh

My lovely dress by : Madeline Marie

Fairy Fail

Vines cover the walls of labyrinths. You need to learn which vines have thorns and which ones don’t. If you want to reveal people’s thorns, get sick

We are a generation raised on fairy tales. When I thought about my future. It was rosy. It was motivating. Limitless. We think of the different kingdoms we’ll travel to. Our dream careers. Who our prince or princess will be. The wardrobe is of course very important. My ideal fairytale version of life was very Shonda Rhimes female lead (minus the infidelity). I was excited to have found the challenging career. I was curating the work wardrobe. Life was happening. We are raised on fairy tales that have quick conflict resolution. No one tells you that the dragons, evil stepmothers, and crazy octopus witches aren’t always easy to spot. That sometimes they are masquerading as chronic illness. I was living my fairy-tale story line. And then I wasn’t. My evil stepmother is POTS. Limiting what I can do and where I can go. My carriage is a walker (rollator). My fairy godmother is made of IVs and salt. Cloaked in 175 mg of Metoprolol. But you know how the story goes, the magic powers always wear off come morning.

When I started feeling my power draining in the fall of 2017, I didn’t even register it as a side quest potential. Turns out it’s a bit bigger than a side quest. Little did I know, I was walking through the entrance of the labyrinth of chronic illness. A labyrinth bewitched with thick fog that makes it hard to think through basic functions. Gravity hits harder here. My standing upright powers diminished. After a while, the floor feels like lava as the blood is pulled to the feet with no way out. A simple change in the wind causes adrenaline induced paranoia. Not being able to discern what is danger and what isn’t. (Nothing says a distorted sense of reality quite like dropping to the floor and crying because someone set a dish down too loudly.)

Once you’ve been in the labyrinth of chronic illness long enough, you learn some of its tricks of course (we love some accidental word play.) You start to know where the villains’ evil sidekicks are hiding. You can avoid some altogether and the ones you can’t avoid, at least you know how to beat them now. For instance, sprinkling some Liquid IV powder into water creates the ultimate hydration potion for a little energy boost. Using a walker acts like a bridge to get you over the lava. You can still feel the heat pooling in your feet but not debilitatingly so. Hot dogs and Digiorno pizza boost powers as well. That one is obvious though, is it not?

One of the best things you can do sometimes is to be still and listen. To feel the walls and remember they are just made of stone and nothing more. Focusing on one section of the labyrinth at a time instead of getting caught up in its vastness, is wildly helpful.

Here’s a word of caution: vines cover the walls of labyrinths. You need to learn which vines have thorns and which ones don’t. If you want to reveal people’s thorns, get sick. Their negativity and/or disbelief of your illness will do nothing other than try and grab hold of you and drag you down. It’s ok to whip out your sword and whack ‘em so they no longer have a hold. This journey is winding enough, long enough, and tough enough, without buttholes giving their two cents.

The silver lining is that the Author of my fairytale wrote a prince charming early on in my story so I didn’t have to find him at a ball whilst pumped full of saline. Cause man on man do you need a sidekick of some sort because it’s a big quest to go it alone. Now if you can get a fellowship going, you’ll be as golden as a golden goose. I’ve been blessed with a fellowship which is not something I take for granted. Frodo wouldn’t have made it off that first road in the Shire without Sam. There are no bonus points for setting out on this journey alone. Seek all the help. Physically, emotionally, mentally, and spiritually.

I’ll be honest though, I thought I’d be through this particular labyrinth by now. I guess it isn’t really a labyrinth if you know the way out and how long it will take. This is no seasonal corn maze made by the local farmer. I suppose the Author of my fairy tale is really going for the bulk of my character development in this chapter. So I’m just going to have to keep trusting in the progress I’ve made and the process it’s going to take to the exit of this thing.

When I think of my future, it is still rosy, it is still motivating, and it is still limitless. You should as well. When you’re chronically ill it can feel like you’ve failed some part of life. Like your entire fairy tale is getting derailed. The storyline may be changing, yes, but that’s all. A change. Not an ending. Think of how boring Snow White and Cinderella would be without their villains and conflicts. This is simply adding some spice to your fairy tale. I really believe I’ll get out of this sooner than later. That I’ll get back to the super fun chapters of my fairy tale where my powers return and I’m driving, working, walking, running, etc. Time will…. tale.

Be Your Own Representation

“Yes, I have a walker but I’m still going to sparkle”

I found myself googling things and coming up with nothing.

I could hardly find informative POTS blogs, forget having them not be completely discouraging with a whiny voice. So I had to make one.

Do you know how hard it is is to find people my age using walkers? I wanted to find fun pictures with walkers and couldn’t find any and thought, I’ll be the one who posts fun pictures of walkers.

No one makes walkers fun. I wanted to look at ways to decorate walkers and could only find decorations for kids (got pink, bows, etc) so I was like well nonsense, I’ll make the walker I want to see.

I didn’t want to use a walker because I felt like no one else with POTS was and then I realized I need a walker. I’m the type of POTS patient who needs help.

Growing up not a lot of people looked like me. No one had my hair. My sister doesn’t even have my hair. She’s got these loose waist length curls whereas I have tight curls that graze my shoulder on a good day.

Sophomore year of college I had this embarrassingly obvious revelation. I’ve modeled almost my whole life. I’ve been the representation. I am the representation. So I had an empowering moment and I become unapologetic about my hair and from that found a whole bunch of people who connected with me and I found a whole community of people who had my hair and it was a fun time.

Why should my illness be any different?

I’ve been essentially bedridden for nearly 10 months. For some reason, I didn’t feel like I had the “ok” to use any form of help. Like I wasn’t that sick. In airports and hospitals, I used a wheelchair. But I wasn’t getting healed when I left these places. I still needed help, yet I never acted on it.

After a 9 minute trip to Target with my mom, where I bent myself over the handles of a cart and used it as a walker, got progressively worse and ended the Target trip with a panicked hobble to the car, putting my feet on the dash in the car, seat laid back, and guzzling down water to get the bitter taste of the Dramamine I had just bought.

For whatever reason, that’s when I decided I was sick enough. The thing about chronic illness is that you become so accustomed to the chronic part, that you forget you had a life before. When you have POTS, it takes 3 times the energy to stand (on a good day). When that is your every day, you forget that standing isn’t an accomplishment to other people. Most people just stand up without even thinking about it! Wild. I forgot. I forgot walking is supposed to be simple.

So I got a walker.

Now I’ve got a snazzy walker and it’s fantastic. I spent well over 6 hours (over the period of a week and a half) sanding, priming, and painting my walker. Pimping out my walker was oddly cathartic. Not only was it something fun to do but it was a visual representation of me embracing where my health was but still being ok with it. Yes, I have a walker but I’m still going to sparkle.

The first steps with my walker were some of the most liberating moments in my life. It’s still hard. I still use the seat to rest every couple of minutes depending on where I am. My blood still pools in my feet when I’m up too long and causes intense burning and swelling, even still its independence.

I’ve struggled with multiple illnesses throughout my life so yes, yes I’ve learned that I’ll get through it. That parts of it are temporary. That I can’t go to all the events and I can’t make all the trips, I can’t make plans far in advance, I can’t be spontaneous but I also can’t do something without a heads up to physically prep. I also know that when you’re sick, you appreciate life so much more. Life becomes about quality, not quantity. Something as simple as a 15-minute car ride with the windows down going nowhere in particular. I don’t always get to go out with my friends but when I do I savor it. My best friend was in town this weekend so I got an IV and we took pictures, went to dinner, and got a mani/pedi over a single weekend and I was able to savor it the entire time. When you become sick, the little moments people usually take for granted become the greatest gifts. So although most will say being sick feels like they can’t live anymore, I would also argue that you feel more alive. Even if it is only for a few moments at a time.

The Not-so-Super Superpower

“Oh I’ll kill him”

Remember when people would ask you what superpower you would choose? I always chose invisibility. You could sneak on planes. You could be in a room and listen without being noticed. You could appear to teleport. You could give the illusion of telekinesis. I felt like it was the most versatile option. The loophole of superpowers if you will because you could do a bit of each technically. But now, here I find myself with a sense of invisibility. It isn’t as foolproof as I once thought. I wish I could pull a Harry Potter and uncloak my illness but I can’t. The closest I can come is fainting or allowing blood to pool in my legs causing them to turn ugly colors with bulging veins even The Rock’s biceps would aspire to have. Not super into that idea. Doesn’t really match my *aesthetic*. So hard pass on the reveals.

If I had a dollar for everytime someone said, “You don’t look sick” I wouldn’t feel nearly as bad that I can’t work right now. Coming in at a close second is, “are you better?” Although it comes from the kindest of places, I am chronically ill. The general theme is that I will still be sick….chronically if you will…even if you wait a full day or a week to ask. “How is today going?” or “how are you feeling?” is significantly better. The last thing I want to do is be like, “Ummm yeah no, shocking, still CHRONICALLY sick looks like it’ll be that way for the foreseeable future. I don’t have the flu. This is a thing. Thanks for asking…”

I am thankful you can’t physically see my illness but not seeing it adds a pressure on top of being ill. At the end of the day, I’m 5’11 with an athletic build. I spent almost all of my life modeling so no one is looking at me and thinking, “that girl can’t walk 10 minutes straight” or “I bet if the waiter drops something she’ll begin crying and fainting”. It’s a catch 22. I don’t want to have to explain my behaviors/survival techniques but I am also happy people don’t give me pity stares.

A big mental hurdle with chronic and invisible illnesses is that you don’t have the time or energy to care what your situation looks like to people. Like me sitting on a bench while having my mom wait in lines or having her carry the heavy things because I can’t strain. It’s those moments while pre-boarding because you’re on the disability list and everyone looking you up and down looking at you like you are a fraud with no respect for the old woman behind you. I always want to turn around and say, “Agnes can flipping stand. She’s just old. If I go behind her slower-than-any-snail-I’ve-ever-owned self, I’ll pass out and delay this flight and it will be an event. So I’m boarding first.” I tried the other way and it DID NOT go well. The lesson here is you never let your pride win and wave off your wheelchair pusher and tell them you can make it on the plane solo. You gotta do what you gotta do but there are tough moments/situations when you’re a healthy looking 24-year-old with an invisible illness.

Another comment I get is from people with the greatest of intentions is when they tell me they are happy I’m out and about because they are worried I’m going to get depressed. Here’s the reality, I have zero control once outside my room. And it is terrifying.

The other day my mom and I had done my swim for the day and we ran into a woman we had done a bible study with years before. She had no idea I was sick. So she asked how to specifically pray for me and asked what I was going through. So while telling her what’s going on with my system, I’m specifically telling her how I struggle with constant high adrenaline, palpitations and high heartbeat (to name a few). She begins praying and not 10 seconds later a loud noise startled me. I opened my eyes and looked over, someone let the air out of something about 30 yards away and it devastated my system. The thing about when my body just goes off is that my thoughts remain the same. So while I have an attack it’s like my thoughts and logic are like “we’ll wait ’til you’re done, crazy” or “oh here we go, this will be a good one” These are actual thoughts I have had while sobbing and getting to a safe position to prevent fainting. Having a sarcastic mind during all of this is a blessing and a curse.

hpbody and mind — Ron is my Autonomic Nervous System. Harry is my thoughts.

I was able to get out an annoyed, “Oh I’ll kill him” (no idea who the guy is) before I began sobbing uncontrollably and then had to lay down because my heart rate went up by more than 30 bpm and my blood pressure plummeted. My mom knew right away I heard a sound so she was communicating to the woman who, at this point, was very confused and didn’t even hear the noise. This poor woman who was just made aware of my condition is now SEEING it. My thoughts came through with a, “well I guess she freaking knows what’s up now. Well done.” My body took about 15 minutes to somewhat recover. On top of it all, I cried my contact out which was a whole other issue….. It took an additional 10 minutes for my heart to get below 100. Something people do not realize about HyperPOTS, is you’re essentially on the verge of an attack at all times. It is one of the most debilitating and constricting symptoms. The moment I step into public, anything (literally the sound of air) can cause an attack and I have no control over it. There is no system override.

That’s just where my body is right now.

Every time I leave my room, I’m at risk of having an attack. This is all on top of my normal and prevalent symptoms, so not ideal.

There is no set medication for someone who has POTS. There are just families of drugs that we try. Earlier this week and toward the end of last week we have been corresponding with my Autonomic Specialist but it turns out….due to my latest beta blocker reaction, combined with my lab results, I am no longer a candidate for any of the medications for those with POTS. Turns out my resting heart rate and blood pressure are too low naturally for any of the medications doctors prescribe for POTS.

Translation: Buckle Up Buttercup.

Bed Riding

For future reference, we’ve been told anything under 55 is when you go to the ER….

Happy Friday,

Time for a general update:

A lot of people have been asking about the blog and when I’m going to post but even for me, it’s hard to find material when you spend 23 hours a day in a dark room. Shocking, I know. My energy levels were also very low to the point that when my mom brought my meals up, simply making eye contact felt exhausting. So writing was not on my to-do list. Making it through my day was all that was on my to-do list tbh.

When we tried to leave Mayo we had every travel issue in the book thrown at us. We spent 27 hours traveling from Rochester, MN to Myrtle Beach, SC. Everything that could go wrong traveling, happened. As some of you know, the 7th plane delay ended up occurring after we got on the plane that had no air conditioning and we had to deplane due to it being over 90 degrees outside. The sweltering heat almost caused me to pass out inside the plane and none of this is made easier by needing a wheelchair. We eventually got to Myrtle Beach.

We got here Sunday, May 13th. I began my beta blocker Propanolol that evening. I noticed my body temperature changes were not so extreme. It took a bit longer for my heart to skyrocket upon moving. I struggled for the first time in my life to hit 160 bpm while working out (albeit I was sitting down on a recumbent bike….) For potsies, the bed is the worst place to be which makes everything really difficult because most of us have chronic fatigue. We also have blood pooling in our legs. For me, it gets to the point where my skin itches and my ankles are so swollen I literally can’t even bend them. Since May 13th, I have been in bed about 90% of the time. We chalked it up to change of environment, exhaustion from traveling and being at Mayo all week. Then more recently, I started noticing more and more of my heart recordings were showing blue which means less than 60 bpm. Even at 50, I thought “meh, I’m fine”. It was the 34 bpm recording throughout the day that got me slightly concerned. For future reference, we’ve been told anything under 55 is when you go to the ER…. you live and you learn and I’m fine. After discussing with my doctor from Mayo, we decided to stop the beta blockers altogether. It is bittersweet because although I feel like my regular sick self instead of barely alive, beta blockers are the main treatment for POTS.

My “normal” sleep schedule has been about 6 a.m. to 12 p.m. It has been an absolute nightmare and my adrenaline is one of the causes of insomnia and is also made worse by it, so not ideal. One night I took 2 Benadryl and 2 Aleve PM and I was still up until 7 a.m. It has been agony. I missed the feeling of being sleepy tired which is completely different from feeling sick exhausted all the time, believe it or not. Wednesday we got some quality CBD products so I have slept well since Wednesday night. Which is a big deal!

So Tuesday was the first day of not taking my medication. My resting heart rate has been steadily rising which is exactly what we wanted. I can be somewhat mobile again. Going from my bed to the bathroom now warrants a change of over a 100 bpm within 30 seconds which is exhausting as always….so we are back to my normal sick self. Who knew I’d be grateful?

I got a recumbent bike from Amazon that I do my little workouts on. The hope is to recondition and to help sync up my system. Depending on the day, I can do 10 minutes and be finished or I can do 10 minutes at a time, recover and do a total of 20 or 30 minutes if I’m feeling wild. That’s a big day though. What the doctors did not seem to consider, is that I have to do these workouts AND THEN shower. It’s so much energy right now. I use a super age appropriate shower stool. It comes in a striking Millennial Grey for those of you looking to purchase one (I lied, that isn’t a thing). To be fair, shaving is a lot easier…Anywho, so basically, my existence has become trying to workout and shower. For example, I can’t workout, shower, and do my hair the same day. Below is the Spoon Theory. This has become the easiest way for people with chronic illnesses to explain to regular folk what our days are like. Go through your day and see how many spoons you use!!

The Fallout

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that.

The reality of HyperPOTS

At a glance, this illness seems like a college girl’s dream. Always in leggings (compression), watching lots of Netflix, eating bad salty food, and not working (because you literally can’t handle any form of stress) Toward the end of this post is the reality. I try hard to be upbeat and positive because it helps me get through it, but days like yesterday, those are the days that you can’t ignore.

Yesterday was a bad day. Yesterday was the much-anticipated fallout of all my positivity and energy I spent getting through this week. I knew I was overdue. It’s the most I’ve walked and talked since Christmas time. I woke up at 6 and I knew. I could feel it all like a snake poised to strike. I went to the continental breakfast not caring about fluffing my hair, putting in glasses/contacts, no makeup just schlepped my way with my mom. One half-eaten waffle later we went back to the room. In the darkest room we were able to make with large pillows and a tall chair blacking out the window I laid quietly. The left side of my chest hurt. I laid there clutching it quietly. My blood pressure cuff automatically went off every ten minutes and it created a throbbing pain and with the prolonged and constant measurements, it began inducing palpitations. My skin was raw and red where the four electrodes clung to me. I could already tell the lower two on my ribs would bleed when I removed them.

My mood was bad. It’s rare for me. Sad every once in a while but never really bad. I was grumpy. I hate being grumpy. I hate trying to not be grumpy but anything I said sounded grumpy and short. So I kept quiet under the extra blankets we ordered for my freezing body. I was relatively nonverbal yesterday. This happens on bad days. Talking seems impossible on these days. That’s how everyone knows I’m sick. When I can’t talk.

My friend was supposed to come down and I thought it’d lift my spirits so I looked forward to it. I took a warm bath to calm my constant shivers. 6 minutes later I was out and my legs were angry red with pooled blood and I was so swollen I couldn’t bend my ankles. I was even worse now. I was exhausted. We had to cancel our plans and the harsh reality of my current limitations were once again, in my face.

Toward the end of the night, I felt a little better. By my Apple watch’s count, I’d taken 38 steps since breakfast. After laughing at some videos with my mom I turned over with my headphones in. When getting settled under the blankets, the button volume on my watch must have been moved because the sound went all the way up during Bazzi’s 3:15. This may not be a big deal to most. A minor inconvenience to some. To me it was catastrophic. I yanked out my headphones. Due to my HyperPOTS with high norepinephrine levels, my body freaked out. I began to full on sob. Uncontrollably sob. I couldn’t stop. It was just sound. But I couldn’t handle it. My mom came to my bedside confused and trying to figure out what happened. My pulse jumped by almost 40 beats per minute. My blood pressure dropped and my body temperature went up. Her touch began to panic me and caused my temperature to spike even more. I pushed her away and threw off the covers only to desperately grab them again seconds later to calm the shivering and tremors. I kept sobbing. And sobbing. And sobbing. Trying to breathe deep and acknowledge that all that happened was just a loud noise. I was safe. It didn’t matter. You can’t outthink chemical reactions in your body when it’s like that.

These are the moments that are hard. Because by no means should a song playing a little loudly trigger a five-alarm fire response, but it did. And it will continue to, for the foreseeable future. I did find a way to disable the music controls but holy buckets.

I’ve been so spoiled being able to medicate in Portland with potent CBD so I haven’t had one of these episodes in months.

Sometimes I need these moments. I need to feel what I’m going through this deeply so I remember to give myself grace. I need to acknowledge where I am. Despite countless motivational quotes, there are certain things you can’t do. (Not right now anyway.) I spent a whole day catering to my needs and nursing myself to a somewhat stable condition only to break down over a volume increase.

That’s the reality of POTS. There are aspects of this that you can’t make pretty. You can’t dress up a breakdown. You can’t laugh off an attack like that. It truly turns your life upside down.

32293538_10215304459392048_4623741721044320256_n (1) — Photo Cred: Janie Barber. circa 2016.

Iron Woman

No matter what I am doing at the time, I need to freeze. It’s like playing a game of medical freeze tag all by myself.

Today was a day I needed. We sat across from Dr. Elizabeth Coon and went over all my results. My sweat test, the prickly one they did before my tilt table test, showed a low amount of sweat on my foot which means *drum roll, please* I have Neuropathic POTS. She believes the series of back to back colds I had for 3 months this fall caused the Neuropathic POTS (NP). NP symptoms come on quickly. Which is why I could run a 5: 48-minute mile in October and by January I couldn’t (still can’t) stand for more than a couple minutes. So NP is partial sympathetic denervation, especially in the legs. Basically, a dysfunction of one or more peripheral nerves. Just weird, nerd stuff. But….my hands tremor. As in, if Kevin Bacon were around he’d be all,

My blood pressure rises whenever it so chooses and I can feel my adrenaline coursing through my body. So Dr. Coon said I have crossover symptoms so I technically have both Neuropathic and Hyperadrenergic (pronounced: hyper-adjre-ner-jic) POTS. She thinks that my low ferritin (mine is 8, anything under 50 is low) caused my HyperPOTS.

None of this matters cause here is the cool part, my buddy Dr. Elizabeth Coon said that if I adhere to everything and aggressively get after it, in a year or a year and a half to two, I could live a somewhat normal life and then just maintain the cardio and diet! HOW GOOD IS GOD?! Like I could go to Disneyland and just make a day of it. I’ll need a recovery day or five but I’ll be able to handle it!

So my current goal is to walk 10 minutes 2 times a day and then work up to 60 minutes somewhere way way way down the road. I also need 10-20 grams of salt a day. Is that a lot of salt, you ask? Well yes dear, the normal human should never exceed 1.5 grams apparently. I’m no mere human though, I’m a Potsie so I can eat as much salt as I want and it isn’t enough. She gave me this amazing list and Kimkim isn’t happy about it. As you can see, my doctor told me to drink hot cocoa, have cake, eat bread, and pancakes. So lots of Olive Garden and IHOP! Maybe this POTS stuff isn’t so bad!

She also prescribed me some additional iron pills to get my ferritin up. You’ll notice the title is “Iron Woman” this is ironic (lol can’t stop, won’t stop) because I don’t have much iron. I get to take Propanolol, a beta-blocker, 10mg twice a day to start. This will help with my heart rate as well as the constant palpitations. We will start this after we get to Myrtle Beach in case something happens while traveling. Low blood pressure can be an issue with this medication and we don’t want to pass out in an airport. She also recommended Water Bolus Therapy. WBT is when you chug two 8-ounce glasses of water to higher blood pressure whenever feeling sick. This can higher blood pressure as much as 40 points.

We got my 24-hour Holter monitor as well as my 24-hour blood pressure cuff. I’ve got more wires than Iron Man. The blood pressure cuff goes off every ten minutes. No matter what I am doing at the time, I need to freeze. It’s like playing a game of medical freeze tag all by myself. Yes, on our way out I had to stop in the middle of the hallway and tell the woman behind me to pass on my right because I had to stand still. Such is life. I also always forget that I am allergic to the four little electrode pads for the Holter monitor, so they itch like crazy…

We went to this sick-nasty green granola place and I’d like to blame my nausea on the food. I was ok before we went in there… Anywho. I wanted to be a dork and document some of the excessive wiring. So I put on an off the shoulder top and posed through the nausea so we could pretend that POTS is cute. I know some of you are thinking, “Really? Of course, Mariah has a top like that when going to Mayo” You bet your bottom dollar that yes, yes I did bring a top like that. I did like walking through the clinic with my little blood pressure satchel because I felt visible. That is something really hard about POTS. If I’m sitting down or walking for 8 minutes or less, I don’t look sick. But my sexy satchel? Everyone who saw me knew I meant business.

So thank you so so much for all your prayers! Basically, I’ll take a year or so, reconditioning my system and hopefully, I will be able to get back to working like a normal 24-year-old!

	Getting Married with… on Getting Married with POTS Part…
	potsiemouth on Siete de Mayo
	cordero barkley on Siete de Mayo
	Travina on The Good Days
	kimberlystevens9093 on The Good Days

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