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!

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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.

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.

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.

We’re All in This Together

Our current situation is rather unique, as in we are all dealing with this global pandemic together in one way or another. Instead of bickering and clinging to our own opinions we should all be working together to seek truth and comfort.  As Christians we are not called to be gullible and easily fooled. We are called to be truth seekers filled with discernment. While social media is abundantly saturated in a never-ending stream of conspiracy theories, we need to be seeking the truth. We need to be seeking out reputable sources, sources that do not completely obliterate the government. We need to seek sources that are truthful and abstain from engaging and sharing in theoretical and nonsensical garbage. We need to believe the best.

Empathy, love, care, and compassion have completely flown out the window. Instead, we are scarfing down and regurgitating whatever conspiracy morsel finds itself on our Facebook timelines or in our inbox. We are so caught up in catching the government in a mega scandal. Friends and family, I urge you to reconsider your hastiness in pressing the “share” button on a post to a news article link that is doing nothing but spreading misinformation and slander. Seek the truth from reputable sources. Sources like the CDC website.

What if instead of spreading lies, we pray? Pray for the techs, nurses, and doctors who are witnessing this pandemic first hand. Pray for all of those currently hospitalized, or fighting this at home quarantined from loved ones. Pray for every single person that has been effected by this pandemic. We need to remember that for a lot of people this is a devastatingly tragic time, where as for most of us, it is just an inconvenience. 

PSA

Honestly….either people are completely overreacting or not reacting to this pandemic as seriously as they should be. There is very little in between.

Stop stealing, buying, and hoarding N95 masks. Hospital workers desperately need them. PPE supplies are dangerously low and are needed now more than ever.

I am currently laid off, I work as a peds care tech for one little patient and they are quarantined from the outside world. During this down time I am going to try to get my sewing machine up and running so I can make masks for all of my nurse and tech friends who need them. Is this the best option? No, but it’s better than the scarves a lot of my nurse friends are having to use as makeshift masks.

If you have unopened boxes of masks that you felt the need to hoard…do everyone a favor and donate them to your local hospital.

Let’s Dance!

I was in the waiting room at therapy with my friend, and a boy, maybe 16 or 17, came up to me, sat as close as he possibly could, and grabbed my hand. Which is a totally normal occurence in my line of work. He asked what my name was, and after I told him, he said, “Kait, let’s dance!” My new friend turned on disco music on his ipad, started singing, pulled me up out of my chair, and spun me around. His enthusiasm and joy was infectious.

His mother was blown I wasn’t rude to him or turned him away, and that I treated him like the person that he is. I love that most friends know who is safe to go up to and dance with! But I wish we lived in a world that was more loving and accepting of our friends with special needs. Instead of turning them away we all should learn to be loving and kind and dance with new friends!

Prayers Please

I’ve struggled through some frustrating medical problems most of my life. Not nearly as much as my brother has, but mine have seemed to become more severe as I’ve gotten older.

I am still dealing with the aftermath of my skin disease, and auto-immune disease triggered by stress that only about 50 people have ever been diagnosed with. According to the surgeons and doctors at the Hospital at University of Pennsylvania, I was the worst case they’d ever seen.

I scheduled a doctors appointment just to get more specialists figured out. I need a new gastrointestinal doctor and surgeon. One who isn’t going to take organs out or give me pills to rebuild my esophogus instead of finding answers to a 20+ year old problem. And I need a new cardiologist, orthopedic surgeon, endocrinologist, dermatologist, and OBGYN. The list seems endless and frustrating. But I’m determined to feel better and get answers.

It isn’t fun waking up puking every single morning. It isn’t fun having a constant fever. Or a heart beat that won’t return to 55 but stays at a horrible 120-175BPM. I want to be able to eat something without feeling like I’m going to die afterwards. And the migraines are getting really old. I don’t know how my mom deals with them so much but they flat out suck.

I want to enjoy life and be healthy and be able to work my butt off for the Lord. And I can’t keep functioning at 100% because I’m exhausted fighting all of this all of the time. I can’t help people the way I want to when I’m this sick all the time. Please pray for me as I attempt to…yet again…find answers and healing.

You just have to laugh…

What a week it has been. On Sunday evening I had a heart episode while in the hot springs in Ouray, Colorado. Since then it has been an exhausting week of going to urgent care in Albuquerque, New Mexico on Monday, being advised not to fly, going on two flights traveling back to Pennsylvania on Tuesday, being met by EMT’s at the Philadelphia Airport, and going to the ER on Thursday.

It is now Friday and I’m beat and I still don’t have any answers. An MRI, neurologist visit, and psychologist visit are my next steps.

Josh has been incredibly supportive this past week. He has been by my side through the entire thing and has been constantly pointing me back to relying on the Lord by how he shows Christ’s love to me. He epitomizes what it means to be unconditional. And I’m so grateful God has him by my side.

With everything that has happened since November and everything we’ve gone through together, I know for a fact we’ve survived it because God is the center of our relationship. And we laugh….a lot. That definitely helps.