Tag: blog

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.

Drop it like it’s POTS

Let’s just do this. Let us just all gather on a blog and get on the same page, electronically and figuratively.

I have POTS. I also have pot. I got chronically ill in Portland, Oregon. What do you want from me? I know a guy who knows a guy who knows how to walk into a dispensary.  Skipped drinking alcohol and went STRAIGHT for the gateway drug of choice. It’s CBD so it actually isn’t a big deal (and if you think it is…I don’t freaking care) but I digress, I have POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. But that is like super hard to keep saying to people so yeah, I have POTS.

“What is POTS?”, you ask. To spare you the vortex of googling POTS, here is the most basic overview. It is an Autonomic Nervous System (ANS) disorder aka dysautonomia.  What does your ANS do? Regulates your involuntary functions. So since mine isn’t having any of it right now it is causing issues with the regulation of heart rate, blood pressure, body temperature, perspiration. Symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, migraines, insomnia, being feverishly hot one second and 4 blankets deep with a heating pad the next, and cognitive impairment/brain fog.

So what do you do? What makes it better?pink salt

To be honest, we don’t really know right now.  The only advice I have been given so far is that I should be consuming 3-5 grams of salt a day and 2-4 liters of water a day along with wearing compression stockings and abdominal binder when I get out of bed. These measures help combat low blood volume which contributes to the syndrome’s namesake.  You guys, I HATE SALT. I’ve never liked it. Yes, I use Himalayan salt pills but then having to eat salty food on top of it? Yucky. 

 While you are reading this, your heart is probably in the 60s-70s. When you stand up your heart should go up about 10 beats per minute. Sitting here now, I am at 59 bpm and when I regrettably but inevitably have to get up to try and start my slow morning routine, my heart rate will reach, on average, 150 bpm within the first 15 seconds of standing. Usually when you stand gravity draws blood to your legs and then it circulates normally. When I stand up my blood pools.  My heart says, “hey come back here!” and this signal triggers tachycardia (rapid heart rate) trying to get the blood that is pooling in my legs to carry on as normal. It is at this moment that my blood pressure drops. So I get extremely dizzy, see spots, lose balance and can ultimately faint if I am not careful or if I push myself.

The plot twist is I have Meniere’s Disease which causes tinnitus (ringing in the ears), an uncomfortable fullness in my left ear and extreme episodes of vertigo.

So what do you do? What makes it better?

Well, you drink a crap ton of water and avoid salt. I have had this for 4 years and I have had minimal issues with it since being diagnosed and getting a treatment plan.  So this has been a fun disruption of said treatment plan. It has been three and half months of waking up with high adrenaline (you know that feeling when you are wearing socks and slip on a carpeted stair? All day) and deciding if the POTS symptoms are worse than the crippling vertigo and throwing up that comes with Meniere’s and either taking my Himalayan pink salt pills and chugging water or just chugging water.   

You know what’s great though? Weed. Well CBD. CBD gummies. CBD oils. CBD chocolates.  For the last month or so I’ve been using CBD as a means to make it through my really long days. Did you know when you can’t drive or work or workout or socialize because you feel too sick, the days seem like a week at a time? Did you know there is a thing called too much Netflix? *gasp* I know, I said it. CBD also calms my adrenaline spikes which really really really helps with settling my pounding heart rate. The first time I took CBD it provided me with my first night of sleeping more than two or three hours.  Take drugs, kids.

Here is the amazing part: I got diagnosed very quickly.  It takes anywhere from 11 months to 5 years for most people to get their POTS diagnosis. Patients are usually told they are crazy. I couldn’t imagine being this sick for that long and not have an idea why and not having anyone believe you.  I started feeling sick right before Christmas.  The Friday after Christmas I couldn’t stand up without feeling horrible. It was driving on the highway going 60 mph reaching for a plastic bag to get sick in that I realized I might need to go home for a few hours. I went to the ER asking for an iron infusion January 16th thinking my iron was low and causing anemia-like symptoms. Turns out not drinking alcohol or caffeine, not doing drugs,  having good hemoglobin levels and not being pregnant can lead to being diagnosed within an hour and one saline IV drip in the ER.

The debilitating components of POTS have been compared to COPD and congestive heart failure. At least 25% of POTS patients can’t work at all.  The polls of my Facebook group of over 12,000 potsies would suggest that number should be higher.  Hopefully, when we get to MAYO they can help me get my quality of life back. At the very least I would love to be able to get out of the house on my own and get myself some cake batter frozen yogurt without the worry of fainting while putting on rainbow sprinkles. Although it is pretty sucky, I do have an amazing support system.

I am not sure exactly what God has planned for this. I’m not sure where He wants me or what He wants me to do but I am taking solace in the fact that He knows what He is doing. He knew I would go through this before I was even born. He knows how this piece fits into my life puzzle. The last two weeks I’ve gone through more of the acceptance phase. I have not been sweet little rainbows the whole time. On top of going through a lot emotionally as far as being concerned about my health and my career, did you know your ANS plays into crying? LOL. So if you’re struggling with a disorder of the ANS, you’re out of luck and full of tears. I only recently stopped doing the laying to standing test with my blood pressure/heart rate monitor on every day.  I kept thinking, “I’m not sick. Maybe I’m making this up. I bet my heart is fine now. I can push through the symptoms and just drive and go back to work.” But after 3 and a half months and over 20 doctor visits, guess what. Wouldn’t you know I still super have POTS?

So for the next 15 days and 14 hours or so, I will remain in Portland trying to stay positive while awaiting my trip to Rochester, MN.  
I know there are those moms out there that are going to google this anyway so here is a link to MAYO website as I have not only found it to be concise and informative but it is also where I will be getting treatment.