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Weekend Chat 4/11/21

This week has been kind of funky. I didn’t do much at all because of my symptoms overriding my desire to do things. I spent 3 hours at the cardiologist, 24 hours hooked up to a heart monitor, and a weekend without my children (they’re on a short vacation) and a whole lotta time in bed. You feel me? If you know, you know. Let’s chat about my week, shall we?

click to enlarge – on a phone? Pinch and zoom in.

Wednesday my husband and I spent the better part of 3 and a half hours at the cardiologist for my strange symptoms I’ve been dealing with for quite some time but that have either accelerated or new ones have popped up. I had seen my PCP over a month ago and all the basic bloodwork looked fine so the next step was a specialist. 

What I’ve been dealing with:

  • high heart rate especially when standing, walking, exerting myself
  • light headedness mostly when upright and walking
  • uptick in headaches that then trigger migraines
  • fatigue uptick
  • breathlessness when exerting myself
  • heart palpitations 
  • heaviness on my chest with occasional pain

I also have some odd things that come up like stiff painful neck, GI upset, and cold chills that feel clamy. 

Because of the history of heart disease on both sides of my family and my own issues with Lyme disease I knew it was time to go in and see someone about this. The heart doctor I saw was very kind, she listened and took me seriously, which is what I was worried would not happen since I’m a young woman – but my fear didn’t come to pass. She ordered labs, blood work and 24 hour urine collection, a stress test, 24 hour heart monitor, and an echocardiogram, as well as a follow up appointment for the end of this month. In addition she sent me home to check my blood pressure and heart rate three times a day and in the morning I check it laying down, sitting up, then standing. 

She mentioned POTS (Postural orthostatic tachycardia syndrome) as a possibility. I had been suspicious of POTS myself for about a year and had mentioned it to a friend of mine. So, maybe we’re onto something. I imagine I’ll get a proper diagnosis of whatever is going on, soon, with everything she is doing to check my heart and body. But she’s also checking for some kind of cancer that affects adrenaline and also heart failure. 

My heart rate does go up 30-40 beats from laying to standing, which I find so interesting and odd but that can indicate POTS. In fact, to my understanding, all my symptoms can indicate POTS and Lyme can trigger POTS but again, we shall see what I end up diagnosed with. I just want a proper diagnosis. I didn’t walk in there with any ideas or preconceived notions. I just went in with my symptoms and health history and let her to do the digging. In these days, with Dr. Google, it’s easy to walk into an appointment with your own diagnosis of what’s going on, and while I did wonder about POTS, I didn’t bring it up, nor do I know if that’s what it is. 

All that to say, she’s checking cancer, heart failure, and POTS. 

It’s been a rough week. Actually a rough few weeks. I can’t walk far without triggering symptoms, or even clean my house, or walk up the stairs to get my kids ready for school without triggering symptoms. So I’ve been in bed a lot this week. I’m ready to know what’s going on, get treatment for it, or whatever, and get to more of a baseline normal for my chronically ill body. 

My bloodwork has been drawn, I’m collecting my 24 hour urine today and turning it into the lab tomorrow, my echo of this week, and stress test is next week, and then a follow up at the end of the month. 

click to enlarge – on a phone? Pinch and zoom in.

The boys are in Austin with their grandparents on a short little vacation this weekend. They’re living it up in a penthouse suite, eating delicious food, SWIMMING (yes in April!) in an outdoor pool overlooking Austin, and enjoying some downtime with their grandparents. I’m so happy for them. I love their relationship with my husband’s parents. It’s precious and beautiful and it means so much to me that they have one another. 

IG ROUND UP

I wasn’t too awful active on my feed but in my stories I was. If you are on IG and follow up, or plan to, I spend more time on my stories than on my feed. Just as a heads up. But here are a couple posts you might like to read.

Reminding myself & YOU.

#lymedisease is damn hard. I don’t want to downplay it at all by making some seemingly cavalier statement. To me this statement is a reminder to keep pushing, fighting, and hoping to beat Lyme.

To all the other #lymewarriors – we’ve got this even on days it doesn’t feel we do.

Can I be honest? I’m afraid. I’m not panicked but I am worried. Worried about my future. My body is so worn down from 13 years of fighting Lyme disease. I’m tired of suffering with migraines, arthritis, and over all pain. And now this. This heart stuff. This possible POTS diagnosis. Or, whatever it is…

I spent three hours at the cardiologist today. She listened intently. She was thorough and kind. She ordered a stress test, echo, and labs. I’m hooked up to a heart monitor for 48 hours. She suspects it could be POTS but needs to confirm and also rule out anything else.

I cried tonight. Not hard core boo hoo tears but I did cry. I released it. I needed to. My body has been holding so much in. I felt like God said to my heart “it’s going to be ok” but even so, I’m still worried and overwhelmed and the fear is there that my life isn’t going to be as long as it could be if I wasn’t sick.

I want to be clear though. I’m not anxious. I’m not wrought with fear. I’m not downtrodden. I’m just feeling all the feels tonight. The unknowns, the waiting for a new diagnosis on top of the others I already have. It’s all so hard.

And if you know, you know.

So, I’ll just hang onto my faith and strength and believe that I’m held safely in my God’s hands. I have to trust Him and I have to believe this doctor will get to the bottom of things. I will be hopeless if I don’t hold onto faith and hope.

Thanks for your support, friends, for the love and prayers. I feel blessed to have met so many new friends here.

You can follow me on IG at @healing.nell 

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YOUR TURN

I’d love for you to share with me below in the comments your week highlights! I read every single comment and would love to connect with you there. Don’t be shy, say hi!

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