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My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Traveling pains

Traveling pains

Originally written 10/20/17

*Before I start this post, I want to take a moment to appreciate how incredibly grateful I am. I now live in California and I’m discovering my first park solo. There’s beautiful beach, it’s 84 degrees (not humid), and I’m sitting in the shade of a big tree while I write this post.*

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From all the packing - organizing my stuff, selling stuff, donating things, packing boxes and moving them from the 2nd floor to the basement (to finish adding to the boxes with smaller things), then moving the boxes to the garage, then into cars, then taking them to greyhound and unloading them finally....then picking them up on the other side and transporting them ... and finally unpacking and breaking them down. My. Body. Hurt. Really badly. My hands were super sore, my shoulders ached, my back was beyond angry with me for all the bending and lifting (with proper form, thanks to my weightlifting days).

A day of traveling on two cramped flights, an Uber, driving to my new place - and the stress of moving two cats across the country that don’t travel well. (And 2 previous flights to go to the conference in DC and back to Chicago..and a bus from Chicago to Milwaukee).

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My body was beyond tense. And then the mattress at my new place was rock hard. I had given my 4 inch thick memory foam mattress topper to my brother because it was too large to ship. My hips began to hurt (because I’m a side sleeper) so bad that I could barely walk. And there was no way to get comfortable. Standing hurt, sitting hurt, laying down hurt. I was miserable. I took a dose of my meloxicam so I could sleep. I very rarely take anything for pain. The meloxicam is a last resort for when I want to avoid pain-somnia (being unable to sleep due to pain).

I decided then and there that I needed to buy a memory foam topper again. I wasn’t going to be taking pain meds and suffering through that pain any longer. I found one on overstock.com for about $100 including taxes, shipping, etc. It arrived and I hoped it would be like my previous one...big let down. Side sleeping, my hip still hits the rock hard mattress. If I lay on my back or side it’s fine. I’m a fairly average weight so I don’t know why I’m sinking through 4 inches of memory foam. Ugh. I need to contact the company and ask for a refund...and get a different one. That’s next on my to do list. But on the plus side, the pain has decreased drastically! Yay :) It’s hard to know what a memory foam topper will be like until you order it and sleep on it. So I’ll have to try again, after I check their return policy.

*TRICK/TIP*
did my research on Amazon for a memory foam mattress topper based on reviews, actual purchases, etc. I downloaded both of the chrome extensions Honey and Wikibuy. They compare prices to other sites and find better prices for you. Wikibuy saved me almost $40 by letting me know it was available on overstock.com.

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Since I live in California now and I want to steer clear of pain medications and sleep aides haven’t helped me in the past...I decided to get a medical card. I do not smoke it,  even the thought of the smell makes me nauseous. I decided to pick up some of the nighttime gummies and they’ve worked quite well. My dosage is super super low because I have zero tolerance for the stuff. The normal dose is a 1/4 of a square gummy... I take that 1/4 and break it into 4 more pieces (so a 1/16th of a full gummy). They taste like absolute poop in my opinion, but they put me to sleep within about an hour. I’m pain free during the night and wake up feeling fully rested. I haven’t had anything else that has helped me this much with pain and sleep. I’ve tried everything my doctors have prescribed or suggested to me. I’ll list them below and what happened

NAUSEA 🤢🤢🤢

  •  Zofran
     —> Works well when I need it but leaves me with horrible constipation. So it’s either nausea now and feeling awful later and being unable to go. Ughhh. So I don’t take this one often
     
  • Ginger chews
     —> Can help a little. But it’s really hard to chew on something when you’ve got the mouthwatering-feel-like-you’re-going-to-puke nausea :/

PAIN 🤕🤕🤕

  • Norco
     —> Very little effect on the pain, bad constipation, nausea, sleepy, overheating, overall feeling of being uncomfortable in my own skin. I mostly just ended up forcing myself to sleep to avoid the nausea
  • Meloxicam
     —> Helps take the edge off of pain that is over a 6 on my pain scale (6 is a very very bad pain day for me, anything more than a 6 and I’m not speaking or moving at all). This usually happens every few months or due to weather changes. No major side effects but not much relief here either. Takes the 6 down to a 3 or 4. Manageable enough to get things done but I still feel the pain with movement.

SLEEP 💤😴💤

  • Ambien CR 20mg
     —> Helped me fall asleep for 2 weeks but I would wake up in the middle of the night (4am) in a panic and gasping for air. After the 2 weeks, it didn’t help me fall asleep anymore. I stayed awake on it once because I just laid there in bed waiting for it to kick in. I felt drunk and weird. I haven’t taken this since I was 19 years old and will NEVER take it again.
     
  • Melatonin
     —> Has worked a few times and then stops working. I don’t know what’s different or why it works sometimes and not others. I can’t rely on it for nights that I need to wake up early for work and am having trouble sleeping
  • ZZZquil
     —> Only tried this one on a few occasions. It has worked but per dose it’s pretty pricey and I didn’t want to become reliant on it...and it hasn’t been around long enough to know the long term effects of regular use. This is my backup for when I really can’t sleep and I’m taking a gamble on whether or not it will kick in for me.
  • Improving my Sleep Hygiene (no Tv in bed, bed for sleep only, no caffeine/nicotine/food before bedtime, having a bedtime routine)
     —> Didn’t help me fall asleep any faster. Just lots of tossing and turning. Getting up, and trying again. Super frustrating.

My body normally lets me fall asleep around 4am. Which is not conducive to waking up early for work, plans with friends, or any person’s normal schedule. It absolutely sucks. My doctor and I were going to do the salivary test to see what my cortisol levels were like...and I kept misplacing the tubes :/ because I moved so many times. I’ll have to talk with my next doctor about that. Which brings me to my next issues... (see my next post about Medication & Moving to California)

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Meds & Moving to California

Meds & Moving to California

I MOVED!!

I MOVED!!