Tag: chronic illness

Bed Riding

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

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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. 34747664_10215500919743434_8887072936482045952_nWe 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?

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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!!Spoon-theory

 

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.

 

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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,

 

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The cult classic, Tremors

 

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!32205824_10215292942824141_168459784264089600_n

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.32293394_10215292878222526_525809691880587264_n (1)

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!

Nueve de Mayo

I’M DONE FASTING!

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I’ve had tests every day this week where I am asked to fast and I have not been into it at all. Being this close to a Valentino’s and not being able to go ham has not been good on the soul.

Finished my last test at 3:35 and ordered Valentino’s at 3:42 while waiting on an Uber in the Mayo lobby.

Today was the first time the new Epic system kind of got on my nerves. We had to wake up early to go get my 24 hour Holter Monitor and blood pressure cuff. We do the song and dance and get to the 19th floor only to be told there is a glitch they can’t override so they couldn’t give me the monitors which means the test won’t be finished in time before my meeting with my specialist. So we won’t be able to go over the results with her in person and talk about how we want to handle it. The purpose of this test is to confirm my subtype of POTS. If it is Hyperadrenergic POTS, it will show my blood pressure rising along with my heart rate. We do have results from my stress test where both were taken. We just won’t have a 24-hour span to see potential patterns.

BUT this did allow us to have a yummy breakfast at a cute little family owned cafe by the hotel.

So Mayo take two today….

I discreetly hauled my pee container from yesterday in an MK bag because, fashion. Dropped it off and no one was even looking at me funny! I think I could be a drug dealer. Be calm, be cool, make the drop, get out, don’t be seen. Idk if that’s how drug dealers talk but I bet they do.

Today was my Endocrine Test. For those with Hyperadrenergic POTS, HyperPOTS for short, the Endocrine System is the gossipy part of your body. Your Adrenal Glands are part of the Endocrine system. This is where your “fight or flight” hormone, adrenaline (epinephrine), starts. So for HyperPOTS, the Endocrine System is playing telephone, which we all know never ends well. My brain says, “stand up” but my systems call out, “OMG, omg she said we gotta stand up for ourselves! Fire up the canons!” The Adrenal glands get very, “You about to see something you ain’t never seen before”, a la Seabiscuit and then my heart gets going and I feel like absolute crap on top of it with lots of adrenaline and no energy or monsters in sight.

This test is done by giving me an IV, putting me in a dark quiet room for 30 minutes, having a nurse quietly come back in and take two vials of my blood through the IV, and then they have me walk around for 10 minutes and then having my blood drawn again. So if I do have HyperPOTS, my blood will hopefully show something that Mayo has seen before and we can better treat me. Hooray!

Let me tell you a quick little story. It’s about what I overheard in the waiting room. I have been realizing that I am the only person I have seen here under 65. As most patients are older, they talk louder and say things. Some adorable, some ignorant hateful.

So I am reading this really cool little display that tells the mini-biography of the man the Mayo Clinic Zayed Cardiovascular Center is named after, Sheikh Zayed bin Sultan Al Nahyan. I’m finding it really cool and tell my mom he must have donated millions of 32191159_10215286100693092_531859883461443584_ndollars. Can you imagine donating millions of dollars to someplace halfway across the world that you don’t go to often? So I start googling this man, seeing what all he has done and take this picture because I love his quote and a couple minutes later this old bigot sits behind us.  He then lets out a disgusted grunt and says to his wife, “look at that *racial slur* he’s from the middle east, guess he’s from the UAE which is better. But still a *racial slur*”. He said a couple other things but I was kind of too upset to process them because here we are, in this place that this man gave 25 million dollars to (this number was not made public until after his death per his request because he didn’t even want publicity for it.) Here is a quote from Chris Gade, the department’s chairman, “He recognized and he has told us directly that the money is really an expression of support for Mayo’s mission to provide the finest medical care to current and future patients without regard to race or creed from all countries of the world,” Gade said of Sheikh Zayed. “That was his specific language back in 1996.” So, sir, if you have an issue sitting in Sheikh Zayed’s waiting room, due to his race, waiting to get potentially life-saving care from some of the best practitioners, and he helped make it possible? I suggest you go somewhere else.

 

*deep breathing*

So yeah test went great and I ordered Valentino’s in the lobby at Mayo so it’d make it to the hotel when we did. And it was amazing, full of flavor and no racism.

I had to order us minis because although the large was great, the box didn’t fit in our fridge and it ruined my leftovers.

You want me to do what…..?

“I was ushered into a room and given a container in a bag that looked like it was from the latest Yeezy collection. She pulls out this massive container and was like yeah so just for the next 24 hours…”

Ocho de MAYO!

Last night was one of the worst nights I’ve had as far as physically and emotionally. I ran out of my CBD drugs that my friend Connor had been getting for me. So I had nothing to calm my system down.  My adrenaline levels and the painful palpitations that started after my Tilt Table Test along with a severe headache continued to be an issue until I finally went to sleep around one. I was just uncomfortable and sick of being sick and had a cute little meltdown on the bathroom floor. I hadn’t taken off my mascara yet so it was fantastically and tragically dramatic.

So today we had blood tests, a stress test, and I picked up my Container (wait for it.)

We got a wheelchair today because Mayo does not give out brownie points for overdoing it so. No glory, no guts. Blood tests were great. Nothing to report.

The stress test was lacking because, in my mind, you know the scene in Space Jam when they are trying to test the athletes to figure out what’s wrong?  The guy running the test said, “how are you doing?” I said, “well I feel like I’m in the Space Jam montage but I’m missing that Barry White song…” He didn’t get it. We continued our non-talking, patient-tech relationship as I did not want him as a friend because he failed miserably. For you uncultured swine or for those of you that want a refresher, Space Jam Stress Test.

I was only able to walk for 8 minutes and 15 seconds before I became too symptomatic to continue the test. Apparently, they predicted that I’d go for 11 minutes and 39 seconds. I just love underachieving.  Especially with my health.

By the time this was all said and done, I had been fasting for 15 hours. Most of you know, food is my favorite so I was more than done. So we wheeled underground to a neighboring hotel and got a large cinnamon roll and french toast before taking a quick nap. 

Now let’s get to the good part shall we?

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My schedule said that at 7:10 a.m., I had to pick up a container. With POTS, as some of you who have read this blog before, you know that salt is a big deal for my condition. So in order to figure out the proper amount of salt I need, we need to watch my potty. It was more aggressive than I thought.

I was ushered into a room and given a container in a bag that looked like it was from the latest Yeezy collection. She pulls out this massive container and was like yeah so just for the next 24 hours, you need to pee exclusively into this container. Like full on, carry this bag around in public and go about your day like it’s normal.

So below is a video of me oversharing because it was a source of joy for us today and anything that can make me laugh through all of this crap right now is deemed worthy of sharing.