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- Self-care & Self-love
- So you have a dragon: living with Still's
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- Still's Onset Stories
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- ePatient Kirsten
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Sunday, August 2, 2015
Saturday, August 1, 2015
Thursday, July 30, 2015
Tuesday, July 28, 2015
One of the terms I've been asked to explore is heat intolerance or sensitivity. It's also something that I deal with because of my fibromyalgia, so that's fun. Issues with heat can happen with a ton of diseases and medications, so it's a wide reaching problem.
Multiple Sclerosis is one of the biggies with this. I watched my great grandmother deal with MS and it was hard to see her deal with the symptoms. I wish that she was still alive now that I'm an adult because I have so many questions for her regarding illness things.
Temperature is regulated in the hypothalamus:
It's supposed to send messages to your body to sweat when you're too warm to help cool you down. Sometimes it doesn't - or doesn't send a strong enough signal. Again that can be for a multitude of reasons.
It almost is like that feeling of when you get into a really hot car and your body freaks out yelling at you about getting a black car with leather seats... You may get headaches or nauseous or lightheaded.
I feel bad, but when I get overheated my brain kind of just craps out. I feel like it's a lawnmower that's run out of gas - and that makes it hard to get it started again too.
The most important thing to do is get to a cooler place. Turn your AC down a few degrees or sit in front of the fan and hop into a cool bath. Stick a cool towel on your neck or strip down to your birthday suit or lay on the floor since heat rises. I usually do a few of these things at once and it helps a lot. It's really important to keep these things in mind as we are in the middle of a heat wave in so many places across the globe.
Monday, July 27, 2015
A few weeks ago, my awesome friend Melissa and I took a trip to the Abilities Expo in the Chicago area.
|Gah my moon face is killing me|
After sitting there for a few minutes and playing with the device, I did a complete 180 on everything I've ever felt about tens units. My mom had a shitty one when I was in high school and college that would zap you. It wasn't easy to control and didn't have different settings. The contacts were not stable and no one ever should've been using that thing. This little guy though was like heaven on my angry neck.
We got a deal on two and split the cost thanks to the schmoozer.
After an almost two-hour drive home from the expo, I needed for sure to use this device again. I was able to play with the settings more and really enjoy it. I've found a few settings that are the go-tos depending on how I'm feeling or what type of pain I have.
The nicest thing is that this has really helped the area where my neck and shoulder meet, which has been a problem area that nothing really helps. My former rheumy thought it was tendinitis, but did nothing for follow up or a confirmation so who knows? From my own investigations, it seems like tendinitis in my trapezius muscle area which runs from the base of your head/neck to your shoulder.
|My faces are ridiculous I know, but I had it up too high!|
There are a few things I do dislike here. This particular model didn't come with literature on where to not use the machine so googling that was frightening and caused anxiety. The pads don't hold a lot of stick for a long time - I've only had it a few weeks and I'm started to kill the adhesive. The intensity of the machine seems to grow the longer you use it on a certain spot. Maybe that's just because of how it's working or something that it's supposed to do but it can be surprising. It also can make me feel a little woozy from the vibrations in addition to the occasional zap when it's up too high. I also wish it had come with a little carrying pouch!
|This kinda works so it's good I kept this I guess?|
I joked the other day that I wish there was an easy way to set my relationship status on facebook to married to T but with this machine as my lover. It's silly I know, but an indication of just how effective it's been for me.
Sunday, July 26, 2015
As you read this, I'm enjoying my last day in Orlando at the JA conference and working on heading home to Wisconsin. Naturally writing a post on traveling seemed like a great idea... mostly because maybe I can remind myself while I write this of things to do.
The first and biggest thing is to relax and rest. I think it's natural to get anxious when traveling with an illness, especially if it's hard on your body.
Make sure that when you are traveling for leisure that you make sure to plan for breaks. Tackle one big thing in a day and maybe leave a flex day in case you're not feeling well. Pacing yourself is the name of the game, especially if you're going to a major destination like a theme park.
T and I always try to plan what we want to do and leave a flex day or not finalize things other than out hotel arrangements so that we have more flexibility in what we do.
It can be super tempting to load up on the caffeine, especially if there's a time difference between where you're going and where you live. It's totally fine to do that, BUT you also need to make sure you're drinking enough water. A good rule of thumb is to have a glass of water for every caffeinated - or alcoholic - drink you have.
I usually try to snag Smart Water when I'm traveling. It has electrolytes which are good but it also comes in a gigantic bottle, which means you get a lot for the money you pay. Since it is a little pricier, you may be more inclined to finish the water too. I know I am!
Make sure you eat enough when you're traveling too! It's really easy to get caught up doing something fun and almost forget to eat. Making sure you eat enough will help you have energy to do the other things you want to do.
If you're traveling, let yourself indulge a little bit okay? I have a potato problem, so when we go places that is often my biggest indulgence... okay, and dessert, but DUH.
That said, make sure you're eating enough protein for energy and getting enough healthy things in you.
Organizing will make traveling a lot easier. Work on gathering things for your trip early on. My coworker starts a pile in her living room and everyone works off of a list, adding to it every day. They check off the item when it's in the pile, which helps them keep track of what they've already got ready to go.
It may not be as simple to do that, but you can usually start small. Our trip to Orlando had me working on a list at the beginning of the month. It was easy because T was gone for the week so I felt like I had to do things! More than that, a lot of the things that I was working on packing were things that I don't wear on the regular - crop tops, short shorts, etc.
Don't worry, the sunscreen will make it into our bags too!
This also includes prepping meds. Making sure you have a pill organizer that can hold your pills or, at the very least, that you can fit the pills you need in your luggage or purse.
This is my pill organizer.
The inside is great because it has more than enough room for up to two weeks of pills for me, depending on how many vitamins and such I'm taking. I may just put those in a separate pill holder.
Some medications really should have a note with them, like biologics. It makes it easier to fly with them. This also means you need to have a cooler and whatnot to keep those items at the best temperature you can while traveling.
Luckily, that means you'll work on bringing ice packs with you!
The last time I flew, I took advantage of pre-boarding. I am SO glad I did.
I didn't use a wheelchair, but I could've definitely used it at some points! It was so much easier to get on the plane first because I wasn't having to walk in a different and uncomfortable pattern. I also was able to easily navigate the rows with my bag instead of that awkward aisle shuffle. I was able to get settled into my seat without so much hassle as well.
I don't think I'll fly without it - unless we can get the exit seats.
What are some tips you might have?