Let's Go Crazy

@DiaryofaSickGrl I feel you. I've struggled with chronic pain and fatigue for 30 years with no real answers. I actually stumbled upon a possibility last week and decided to order a blood test myself as a first step. If negative, I don't have to go through with a disappointing dr appt.

Can I be honest? I’m actually really tired of fighting for my health 24/7, 365 and there still always being something wrong or something new to address. I’m so very tired, like deep in my soul. I desperately need a break but I may never get one.

@linadreaamy 98

bunu çözersen, IQ seviyen ortalamanın üstündedir. Peki sen zekana güveniyor musun? çözebilir misin?

@linadreaamy 8

bunu çözersen, IQ seviyen ortalamanın üstündedir. Sünger bob'un kilosu nedir?

@DiaryofaSickGrl That's what I keep telling everyone. There is no possible way I could afford to have ever thing checked. I spent 1000's last year for no diagnosis so I'm pissed and need to give it a break.

It’s so exhausting trying to prioritize what needs to be handled first when all the check engine lights are on in your body 🫠

@kiara_whispers 176

Only a few people find the answer to your IQ is different. How many members in there room?

@ShawnRyan762 Shawn right as she said Bibi called, "I don't know about this," tells you all you need to know about him.

“He said to me on the phone, it was supposed to be you, verbatim. At the moment, I just took it as poorly expressed grief. He was crying, I was crying. I thought he said, it was supposed to be you. It was supposed to be you. So I have questions about that now.” “What scares me more is considering the world that our children will inherit if we stay quiet. We feel the squeeze. We feel the evil. We feel the cloud. It’s there. And you have a bunch of people who, whether it’s for money or for fear, are allowing it to happen. There are so many historical lessons about what can happen to a country when good men do nothing.” @RealCandaceO

@VinoNStrosGal Yes! 1000x yes! Friends and family don't really understand because they don't live it or didn't witness it. My husband is the only one that sort of understands because he was there for my two episodes that led to my diagnosis of POTs.

I want to talk about a side of POTS/dysautonomia we rarely discuss. We talk about the physical symptoms, the heart rate, blood volume, vasodilation, temperature regulation, salt, fluids, compression, medications, infusions. All of that matters. But we don’t talk enough about what happens to your mind when your own body suddenly becomes a stranger. January 30th, 2022 is a night I will never forget. I was living in St. Petersburg in a beautiful apartment. Married at the time. Had an incredibly gifted, intelligent, empathetic 7-year-old stepson. My health had been declining after multiple COVID infections, but I still didn’t understand what was happening. At 11:30 p.m., I woke up feeling like thousands of fire ants were biting my scalp. Anyone from Florida who has been bitten by fire ants knows that burning, electric pain. I walked into the bathroom, looked in the mirror, and my face was beet red. Hives and welts were appearing on my body. I used the restroom, stood up… and the world went dark. I collapsed. EMS came. 🚑 Orthostatic testing followed. Eventually I was diagnosed with POTS/dysautonomia, specifically hypovolemic POTS. That moment changed me. The only way I can explain suddenly losing trust in your own body is this: It felt like being thrown into the world all over again. Like a newborn trying to understand lights, sounds, sensations, and survival. Except I was an adult. The body I knew my entire life suddenly felt unfamiliar. The Marine. The athlete. The aspiring Master Sommelier. The independent woman I knew felt like she disappeared overnight. I remember thinking: “Christina Marie died that night… but somehow I’m still here living inside a body I don’t recognize.” And I think many people with POTS understand exactly what I mean. Because the physical symptoms are only one battle. The other battle is teaching your brain and nervous system that your body can be trusted again. Adrenaline surges. Heart racing. Heat intolerance. Strange sensations. Your brain starts remembering every time your body scared you. That doesn’t mean POTS is “in your head.” It means what happened to your body affected your mind, because we are human. I’m realizing now that healing isn’t only salt, fluids, pacing, and treatments. For me, the next chapter is also working on the trauma my nervous system went through. EMDR, (Eye Movement Desensitization and Reprocessing )somatic therapy, and learning how to experience my own body again without fear. Because I don’t just want to survive with POTS. I want to feel alive again. And I think that part deserves to be talked about too. If you’re reading this and you live with POTS/dysautonomia, I’d love to hear your thoughts. Have you experienced this part of the illness too, the fear, the loss of trust in your body, the process of learning to feel safe again? And if you’ve done therapy, EMDR, somatic work, biofeedback, or anything that helped you rebuild that connection with your body, please share your experience. Someone else may need to hear it.

I spent decades trying to fix myself alone youtu.be/uj41EVe1IrY?si… via @YouTube

@ThePOTSPostman I stay inside as much as I can. I wear a cooling vest on my motorcycle but that only goes so far. Hand held fans are great too. I always carry my electrolytes with me and when they are gone, I'm heading home.

I have yet to make it through a heat wave without it absolutely wrecking me. If you any chronic illness that causes heat intolerance, drop the tips you swear by. Cooling gear, hydration, products, anything that helps! Hopefully this thread helps everyone else too.

@DiaryofaSickGrl I am 54 and have to stick to my strict skincare regime to prevent breakouts. It sux.

My mom is 19 years older than me and still gets acne too so mine might be forever 🫠

@DiaryofaSickGrl Electrolytes all day. It is all I drink besides my coffee.

What has been the most helpful treatment for your POTS?

@JustTheTweets17 My husband and I had it around the same time as you and were so very sick for 3 weeks. I told him we were not going to the hospital but did get really nervous at one point.

My husband and I both had covid in August of 2021. We both became VERY SICK. Our blood oxygen was in the low 80's. We had a prescription for Ivermectin but the pharmacy played games for over a week and would not fill the order. Finally my daughter went to the pharmacy and told the pharmacist if something happened to us she would spent her life seeing he was punished. He finally gave her the prescription. Two days after taking the ivermectin, we walked outside for the first time in 30 days. At one point I was very seriously considering going to the hospital but my husband wisely discouraged me from that, he was right. I firmly believe had we walked into the hospital we would not have walked out. Thank you to @stella_immanuel for having the courage to buck the system and save our lives. Anthony Fauci needs to spend the rest of his life in prison.

@DiaryofaSickGrl I take flaxseed supplements for the Omega 3s because I am allergic to fish.

I keep forgetting to trial flaxseed oil. Anyone have any pointers on how to incorporate it into your diet? I was thinking of starting low and slow like I always do with new foods and put like a drop on a cracker and go up from there lol. But also like long term how should I use it?

@MJH_MT Thank you for the sweet words!

@iwunderu Just a beautiful story describing a beautiful person, inside and out. And you, her story-teller, her daughter, who inherited her same traits. Sending hugs 💜❤️💕💜❤️💕

@DanBurmawy As a former art camp instructor, 3 yr olds are not mature enough for hours of camp. I would hazard a guess this is a mixed age camp.

My son is three years old. For the past two weeks he’s been at a summer camp a few hours a day. The teachers have complained to my wife three times already. Here’s what they reported: He pushed another kid. He didn’t sit still when told to. He tried to leave the room when they said no. He can’t stand in line. I’m not exaggerating. Grown adults pulled my wife aside, three times, to report that a three-year-old acts like a three-year-old. They warned her that if he doesn't change his behavior then he can't continue attending the camp. Maybe we should medicate him. Fix the defect of being a small boy with energy and a will. He won’t be going back. I don’t want people like this anywhere near my son. A civilization that pathologizes a toddler for refusing to sit in a line can't raise men willing to stand and defend it.

@DiaryofaSickGrl I have the opposite problem. I am freezing because my hands and feet get so cold even holding hand warmers all evening while on the couch. I have a thin jacket that is now my sleep jacket. I can't sleep in long sleeve pjs because I do get an occasional hot flash around 4am.

Does anyone else sleep with ice packs? 🧊

@blancadiega5 @ImMeme0 I have a hard time believing someone in that tax bracket has such a low car registration fee. My car is not fancy and is 7 yrs old and that's what I pay.(ish). When I have had new cars, it is in the couple hundred range.

@ImMeme0 Shes lying I just got my car registration Tx $76.25 Not $75

Woman who moved from California to Texas with her husband in 2022 compared their costs of living in both states, and the differences are eye-opening: California Home: $1.8 million Texas Home: $1.15 million California Electric Bill: $511/month Texas Electric Bill: $346/month California Water Bill: $448/month Texas Water Bill: $140/month California Gas Bill: $175/month Texas Gas Bill: $239/month California Car Registration: $830/year Texas Car Registration: $75/year California Gas Price: $5.89/gallon Texas Gas Price: $3.49/gallon California Property Tax: $22,000/year Texas Property Tax: $19,000/year And because Texas has no state income tax, they estimate they’re saving about $50,000 per year compared to what they were paying in California. For them, the move has resulted in significantly lower overall living expenses and a much larger financial cushion each year.

@renabaddie_ 762

Crack the password let's try if you're genius 0.0001 % will crack the password

@VinoNStrosGal Yes! My husband and I used to enjoy wine and going to Vineyards and belonged to a wine club. I cut down the amount they sent and finally just recently canceled it. Wine was stacking up and some gone bad.

I completely understand. 💜🫂 One of the hardest parts for me has been giving up wine. I used to love learning about the regions and opening a special bottle, letting it breathe, and just enjoying a glass. Most people think it’s just about not drinking, but they don’t realize POTS takes away little pieces of the life you loved.

If you’re reading this and you’re a fellow POTS or dysautonomia warrior, I just wanted to share something that happened to me yesterday. When I was first diagnosed, I was wheelchair-bound. Every time I tried to stand up, my heart would absolutely take off. My heart rate would shoot into the 190s, sometimes even higher, and it was terrifying. I felt impending doom. I truly thought my life was over. I’m not a tiny person, either. I’m 6’1”, and before all of this I was an athlete. I spent years running five miles a day, five days a week. I was a gym aficionado. Then POTS came along and completely changed my world. In the beginning, I became incredibly hypervigilant. I checked my blood pressure constantly. I wore my pulse oximeter all the time. I brought my blood pressure cuff with me in the car. Every little fluctuation sent me into a panic because, honestly, what we go through is frightening. When you’ve experienced blood pressures as low as 56/26 and felt like your body was shutting down, it’s hard not to live in survival mode. Over time, my baseline improved some. I removed myself from a very toxic environment, moved back in with my parents, my stress hormones and adrenaline dumps settled down, and I started learning what my body needed. I discovered things like normal saline, lactated ringers infusions and the importance of blood volume expansion. I also learned that every single person with POTS is different. Some people have milder cases, some are moderate, and some are severe. Some days you feel almost human again, and then the next morning you wake up feeling like you got hit by a truck. Yesterday was one of those reminders for me. I planned ahead because I had a dermatology appointment and appointments taking a lot out of me. I got my liter of lactated ringers first thing in the morning, had my LMNT, came home, ate a couple bowls of Raisin Bran, got busy, and completely forgot to keep up with my sodium intake. By the time I got home from my appointment, I felt incredibly POTS-y again. The fatigue was back, the weird chest sensations were back, and I just felt awful. Then I realized what I’d done. I ate a big slice of pizza, and within about twenty minutes I felt so much better. For those of us whose doctors recommend increased sodium for POTS, sometimes it’s easy to focus on the fluids (I drink 3 1/2 liters of water daily) and forget that the salt is just as important. Of course, this doesn’t apply to everyone. People with conditions like congestive heart failure, advanced kidney disease, certain liver diseases, or anyone who has been instructed by their physician to follow a low-sodium diet should follow their own medical advice. But for my fellow POTS warriors, yesterday was a reminder that even years into this illness, we can let our guard down. That’s not failure. That’s just being human. And maybe that’s the biggest lesson I’ve learned since my diagnosis: the goal isn’t to become fearless or to stop listening to your body. The goal is to stop living in constant fear of it. There really can be better days ahead, even if they don’t come all at once. Sometimes they’re built one liter of fluids, one salty drink, and one slice of pizza at a time. 🧂 💜

@bekahj Ashwaganda helped me when my anxiety first started.

Any natural remedies for anxiety?