POTS Heat Survival Hacks

Survived Creation Fest, which is our summer adventure 1 of 3. Two more to go! Here are my hacks to surviving a 5 day outdoor music festival with lots of walking, heat, humidity, and camping…or really even just walking from your front door to your car (let’s be real).

#1 Buy. Instant. Ice. Packs. Seriously, Target has them, CVS has them, Walmart has them, get them. They are fantastic for cooling down in the heat, icing areas that are in pain, and lowering inflammation. Which are all much needed things even at home!

#2 Portable fan, bonus points if it’s one of those that spritzes water at you. Actual lifesaver.

#3 Ice necklaces and cooling neck wraps. Drench them in water and keep them in your cooler. I have two of these cooling necklaces by Nano-Ice and I also have about 10 regular cooling neck wraps. Great ideas to stay cool.

#4 Cooler backpack. Emphasis on the backpack for those of you that have nerve pain in your fingers and carrying something causes you intense pain…here’s the one I purchased from Target for S20! It was originally $45, but I got the last one Target had for more than 50% off! And it was a huge lifesaver during the trip, I would keep ice packs, drinks, cooling necklaces, and my fan in the backpack and replenish it each morning at our campsite before we headed down to the festival.

Once I overheated though, that was it. I was unable to cool down at all and my body was shutting down and I couldn’t function anymore. So that’s when I had to get into my car with the AC blasting. Or if we weren’t near my car, my fiancé would pour water all over me and use the fan to try to cool me down. There were heart episodes I had during this trip where every part of my body went numb and I was genuinely freaking out because my heart rate was going from 48BMP to 178BMP and back again. So if you have a heart condition, or thermoregulation issue as well, take self care seriously when you are out and about, and make sure you are preemptive with taking care of your health.

I hope this list helps you! Pray for me as I have 2 more outdoor trips this summer!

Here’s the thing..

Here’s the thing about chronic pain, at least for me….

24/7 I am constantly in some level of pain. All the time. However, there are flare ups, there are days it is significantly worse, days where it’s not as bad, days where the pain is targeted in different locations in my body, and days where it’s worse because of too much use from the day before.

So most of the time my constant level of pain is at a 5 (on a scale of 1 to 10), which is completely manageable for me. But imagine never having a break from that moderate level of pain, and occasionally having days where it’s unbearable, it starts to wear you down.

Which is where I’m at today. Today I tried to do things and ended up back in bed frustrated by how much pain I’m in because it’s at a level that isn’t possible for me to work on my list of things to do. So I broke down crying. Not necessarily because of how much pain I’m in but because I’m frustrated that I have a day off of work and I can’t physically get out of bed.

Wanna know what I did to cause a flare up of intense pain today? Yesterday I worked a full day, stood most of the day from 7am to 9:30pm, walked around with my dog and we did a small run that was maybe 100 feet. Nothing crazy, yet here I am unable to get out of bed.

I need to allow myself to rest and recuperate without mentally beating myself up over pain.

“It’s Just Anxiety.”

I’ve always had anxiety. My parents joked that I came out of the womb anxious. Because of this anxiety I’ve thrown up every single morning from since I was 4 1/2 years old (that’s 24 years for those of you keeping track at home). 24 years of throwing up every single morning. 24 years of unnecessary tests, scoping, probing, medication to rebuild the tissues of my esophagus, and organ removal to try to cure my chronic morning sickness. Yes. Organ removal.

During Covid I stayed home from work, church, and anything social for a total of 9 months, which was the worst thing I could have done. I thought my anxiety was bad until I tried venturing out into the world and doing things again, turns out I made my anxiety 1000 times worse. Venturing back out into the world for me meant crippling panic attacks in grocery store parking lots, sobbing, shaking, and hyperventilating at the thought of leaving the house, and an inability to do the things I once loved. I also developed a new symptom to my anxiety during this time, which was my entire body going numb. Anxiety was no longer something I just had to deal with and occasionally take rescue medication for, it was now in control of my entire life.

Venturing back out into the world meant more psychiatrist appointments and more medications than I’ve ever been on before. It meant more rescue medication than before. It meant trying to find natural remedies for panic attacks and surviving social situations because I grew exhausted of how xanax made me feel even though it became a daily part of my survival plan.

Normal things that had not increased my anxiety suddenly became out of the question. My increased anxiety made my marriage proposal weekend a living nightmare. Which looking back kills me because I would have loved to be in the moment and enjoy a meticulously planned out 4 days but I allowed my anxiety to make me hate every minute of it, and almost completely ruin it.

Anxiety is exhausting. It has stolen my life. It has become the biggest factor of my life. Every scenario I enter on a daily basis needs to have at least two exit strategies set in place, and that’s if I can even muster up enough mental strength to venture out of the house or out of my comfort zone. And believe me, my comfort zone is ridiculously small.

So please don’t tell me it’s just anxiety when it is something that has been debilitating my entire life and the lives of many others. If you don’t know what anxiety can do to a person, just stay out of the conversation.

Kelsey, thank you for this brilliant post. You really hit the nail on the head. Check Kelsey’s Instagram out here.

Living with POTS, etc.

I wish I could love summer. I grieve the things I can no longer do because they are now a recipe for disaster for my body. I miss being able to hike and enjoy the great outdoors. Although heat and exercise has always been a trigger for my EDS and POTS, it has never been as bad as it is now.

Now I can’t be outside for too long before my heart starts freaking out and I completely lose feeling in my entire body. It uses to just be that I lost feeling in my toes and fingertips but now it’s my entire body. Which is scary. It’s scary to not be able to feel anything, especially my face.

What’s worse is how my body responds to sudden changes in temperature. I cannot go from an icy AC blasting house to outside if it’s anything above 72°F and vice versa. I almost need to be stuck in a temp controlled bubble at all times.

I need to move somewhere where there’s 0% humidity and it’s never anything but 68°F year round. That would be best for my heart and my pain. I can’t imagine not being in pain everyday and not having all of these other issues everyday. It would be so refreshing.

But alas, that’s not the case. And I live in a humid climate that hates my joints and my heart. So I need to combat these environmental factors with preventative measures. Things like cold necklaces and making sure I stay on top of my 4 different heart supplements and my nerve pain medication. I need to be making sure I’m honest with my doctors about what I’m feeling and new symptoms so they can help me with new treatment plans.

I need to advocate for myself first and foremost and make sure I am doing everything I can to stay on top of my body because no one else is going to do it for me. Not my fiance, not my friends, not my family. No one is going to advocate for me the way I can advocate for me. I know what brings a heart episode on, and I know how to avoid it (for the most part). I know what makes my pain worse, and I know how to avoid it (again…for the most part.) I need to look out for my own health.

Life with Chronic Pain

I am in pain every single day. Some days are worse than others, some days I only notice it if I decide to stand up for more than a few minutes. But every day to some degree I’m in constant pain.

I’ve had doctors say they don’t believe me, tell me I’m just looking for drugs. I’ve had doctors tell me I’m too young to be in pain. I’ve had doctors tell me the pain in my spine, the spine I’ve broken numerous times, is made up. Even though there’s imaging proof for the pain slipping into my spinal chord and a fracture that didn’t heal well…the pain is made up.

But the other day a doctor listened to me. And now I’m starting on medication to help not just my nerve pain but also my musculoskeletal pain as well. To say I’m overjoyed about this would be an understatement.

My pain causes me to lose patience with my ability to function, it causes me to be easily irritable, and sometimes it becomes too overbearing and can’t help but just sob for awhile. I get extremely upset with myself because of how much I hurt on a daily basis.

But a doctor listened to me. She listened to me about my mental health and the concerns I have with my current medication regimen. She listened to me about my ehlers danlos. She listened to me about my heart diagnoses. And I felt heard. For the first time in many years, I felt like a doctor actually cared. I felt like she was on my side.

I am so excited God put this doctor in my life. And I’m thrilled to start this new medication. I’m looking forward to minimal pain days and I couldn’t be more excited.

If you’re living your chronic life desperately seeking treatment and someone to listen to you…don’t give up! Good doctors are out there…they’re just hard to find sometimes.

Let Me Interrupt My Radio Silence with This Post

I apologize for the months of radio silence. The thought of having to sit at my computer and type out a coherent blog post seemed impossible, so I didn’t. I have random stacks of ripped off pieces of envelopes with random thoughts on them littered about the house and about 74 notes in my phone that are just filled with random ideas and nonsense that I don’t even know if I could comprehend if I were to start going through them.

But I do know that most of them were written because a spark of, ‘I think I finally got my crap together enough to write a post’ lit the fuel just enough for me to jot down a thought…which was really just me having a manic moment…or day. But rarely are my days manic. Just moments.

The reality of living life as an unmedicated person going through life with bipolar disorder, PTSD, depression, chronic pain, and major anxiety is not fun. To be completely honest it’s been a living nightmare. Why am I unmedicated? Long story short…psychiatrist’s are severely hard to come by these days, and good one’s…just forget it. I’m on the verge of giving up…again.

I am attempting to work a full time job, be in college full time, serve a demanding ministry position in my church, have a house AND an apartment to take care of (which if you happen to venture into my apartment…fair warning…it has turned into what the inside of my head looks like), love two dogs and train our new puppy (that’s three dogs total for those of you keeping track at home), and plan a wedding with my fiancé. I feel like I’m leaving things out, but it’s not on purpose, it’s because my fingers can’t catch up with my brain.

I feel like I’m epically failing at being a loving and supportive fiancé, I’m failing at being a daughter, I’m struggling in school, I’m struggling in ministry…I am seeing the chaos around me, chaos that my depression has helped me orchestrate, and chaos that I am far too aware of, because my anxiety doesn’t let me sleep.

Yet I’m paralyzed. I’m stuck. I feel like I’m watching every single part of my life fall apart around me and I’m glued to the floor watching it all happen.

I made the mistake of googling marriage as someone with bipolar disorder and found an article that stated 90% of couples with a person who has bipolar disorder end in divorce. So I took this newfound information and I collapsed. I sobbed on the couch. I’m going to sabotage my marriage. I’m going to become too much a burden to my partner. He is going to leave me being I am going to push him to leave me. And a very wise woman in my life said, “So you aren’t trusting God with your marriage.” I guess I’m not.

I need to be spending time in the Word, with God, and also getting my crap together…I say for the fifty millionth time.

Forgiveness

Currently going through Lysa Terkeurst’s book Forgiving What You Can’t Forget with my mentor. I am loving this book for so many reasons and highly recommend the book and the journal if you struggle with forgiveness or are going through the process of forgiveness.

This week I was challenged with really looking inward and finding the pains I still hold onto so deeply.

I was reminded of something that occasionally pops up, the comments made by some of my closest friends when I was going through my devastating skin disease.

Comments like, “You deserve this because you’ve always had such perfect skin.” “You’re paying your dues since you’ve never had acne.” “Good luck finding a husband with that face.” And more.

Now this skin disease I have destroyed my face. My eyes were swollen shut, my face was at times swollen three times the size, and extremely painful lesions that wouldn’t stop filling up with blood completely covered every inch of my face. It was debilitating and I couldn’t leave the house. Most nights were spent wide awake because the pain would not let me sleep and I would be screaming in agony for God to take the pain away.

Since then I’ve been through numerous treatments, surgeries, and injections to try to fix the painful scarring left over. And I still deal with the scars refilling with blood. I’m still in daily pain because of it.

That all being said, I need to forgive those friends for making those comments. I need to process through forgiving them for how painful those comments were to me, and how alone I felt during that time.

That currently looks like uncovering the painful comments that I’ve shoved down deep inside of me, acknowledging them, and asking Jesus to help me heal as I forgive them for what they said.

Will this make the pain I sometimes still feel from those comments go away? No. But we are commanded to forgive those who have wronged us. And forgiveness is apart of the process of healing.

Stop Putting Humans Where God Should Be

Okay so Rachel Hollis….

Let me preface what I am going to say with this: I own 2 of her books. I have not completely read them all the way through, I have cherry picked what I read from them and only read them on a situational basis. I do not listen to her TED Talks and before today I didn’t even know she was on TikTok and I didn’t realize that her book talking about her divorce was riddled with controversy. In fact, for my own reasons, I stopped following her all together once the news of she and Dave’s divorce broke out. This wasn’t necessarily an intentional decision, I just stopped following her after that.

Did I read her books as my Bible? Have I replaced the Bible with “Girl, Wash Your Face?” or “Girl, Stop Apologizing”? Absolutely not.

She is a human being. She is not God.

The disappointment and heartbreak that comes when a celebrity’s true colors are shown happens because we tend to place really cool and motivating humans where God should be in our lives. We see these people doing things we want to do or being the people we wish we could be and we put them in a high place of honor. Not just on our bookshelves but we place them on a pedestal in our lives. They don’t just hold a place of honor in our living rooms or our offices, they hold a place of honor in every aspect of our lives. We follow these people on every social media platform, we have their books, their clothes, their jewelry, we follow their diets and their lifestyles to a T in hopes that we will too someday be them. Is it a bad thing to be motivated by fellow humans? No, it isn’t. But it becomes a bad thing when we obsess over these humans and place them on a pedestal. That’s the problem.

Do humans make mistakes? Absolutely 100% yes. Did Rachel Hollis make a mistake? Oooooh yeah she did. She messed up. I won’t share everything she has done on my blog, I’m not even going to touch on what she has done. But I will say that her apologies need some work and her true colors have been exposed.

Do these recent developments and the exposure of Rachel Hollis mean I am going to burn her books in my backyard and spend a week mourning? No.

It does however mean that I am grateful that I did not allow myself to get swept up in the bandwagon that was the preaching’s of Rachel Hollis. I hope she makes a comeback and realizes the things she has done that are wrong. I hope she finds forgiveness and reconciliation in this situation. I am going to pray for her, and pray for her followers who are hurt right now. And I hope you do the same thing.

We can support one another and be motivated and encouraged by one another without attempting to be God to one another.

God take this pain from me

I really just want to be at the whole clothed with strength and dignity and laughs without fear of the future part of my life now please.

I don’t feel strong enough to survive this pain much longer.

Key word there being “I”, I guess.

God needs to be my strength. I need to let Him in and allow Him to cover me in His strength and comfort. Because the reality of all of this is that I’m weak and fragile and broken.

I tend to do everything I can to attempt to numb my hurt because being out of control and being in pain is killing me. And the more I can numb the pain the better I feel like I can survive my days.

But the attempts to numb the pain are actually emotionally crippling me to the point where I’m not healing, I’m not thriving, and I’m certainly not relying on God or giving control over to Him.

So I sit on the floor in my tears, post panic attack, and I’m begging God with the last few ounces of strength in my body….to be my strength and my comfort. So that I may move on to a period of healing and be able to help others heal and be in relationship with God.

Lord, take this devastation and brokenness and create something beautiful for You.

Chrissy Teigen’s Loss

Let me begin this post by saying I am a Pro-Life advocate and supporter. I have been following Lila Rose since she spoke at my college in 2012. And I appreciate that she has been posting to her pages about Chrissy Teigen’s loss. I don’t know her motives for posting. But I know that every time I see a post regarding their loss I can pray for her and other mama’s who have lost babies.

There is an unhealthy and toxic mindset saturating the comments of Lila’s posts and Chrissy’s posts. Comments that she should not feel pain for this or grieve the loss of her son or she deserves this because in the past she has supported abortion and she is Pro-Choice.

Now, I could totally be wrong, but the Jesus I follow would have mourned with Chrissy. He would not be bringing up her faults or past ignorance. He would be sad for her and with her.

Why aren’t we more like Jesus? Why are we slamming her and condemning her during this time of mourning? Instead of hating her…pray for her. We are not called to like everyone but we are called to love them.