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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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.

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.