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Chronic Illness Bloggers Holiday Giveaway #spon

Who doesn’t like holiday freebies? Lots of awesome raffle prizes are available through the Chronic Illness Bloggers Holiday Giveaway – click the graphic and choose which prize packs you want to enter for!

This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse – https://theinvisiblef.com/; Aromafloria – http://www.aromafloria.com ; BackPainBlogUK – https://backpainbloguk.wordpress.com/ ; Bridgwater Crafts – http://www.bridgwatercrafts.com/ ; BeingFibroMom – http://www.beingfibromom.comBroken Teepee – http://brokenteepee.com/ ; Chronically Content – http://www.chronicallycontent.com ; Chronic Mom Life – http://www.chronicmomlife.com ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm – http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme – http://www.guptaprogramme.com/ ; HFactorWater – http://hfactorwater.com/ ; Kirsten Schulz – http://www.kirstenschultz.org/ ; Living Well Today – http://www.livingwelltoday.com ; Living Grace Blog – http://livinggraceblog.com/ ; Lupus Chick – http://LupusChick.com ; Megan Schartner – http://www.liveken.com Melissa Swanson – http://www.fibrowarriorslivinglife.com ; Mini2z – http://www.mini2z.com ; Natalie Abbott – http://www.stillicantbesilent.com ; Organic Aromas – http://www.OrganicAromas.com ; Oska Wellness – http://www.oskawellness.com ; The Pain Free Life – http://thepainfreelife.com ; Patient Playbook – http://patientsplaybook.com ; Perfectly Ambitious Blog – http://www.perfectlyambitious.com/ ; Posture Pump – http://www.posturepump.com ; ProHealth – http://www.prohealth.com ; Rebuilding Wellness – http://rebuildingwellness.com ; Strength Flexibility Health EDS – http://www.strengthflexibilityhealtheds.com ; Sylk USA – http://www.sylkUSA.com ; Theraspecs – http://www.theraspecs.com ; Vital Plan – https://vitalplan.com 

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Will Work For Coffee: Self-Care At Work #sponsored

Apparently I have an inordinate number of pictures of coffee on my phone. I also have a ton of photos of my dog, but that at least makes more sense than my strange compulsion to photograph my work coffee habit!

I am a firm believer in the power of caffeine to cure many of the ills of life, and especially the ills of trying to work with a chronic illness.

And I’m only saying this somewhat tongue-in-cheek.


I am a firm believer that caffeine is the best medicine ever. Yes, it’s a tad addictive and rather expensive (which is why I most definitely do not add up what I spend on my coffee habit!) but it’s often literally the only thing I can do in the morning to get myself up and going and feeling filled up. 

Iced coffee, drip coffee, espresso drinks… some combination of all of these is a big part of how I survive my full-time job with a chronic illness. 

I deal with a lot of pain from my neuromuscular disorder and fatigue from my autoimmune disorder so am always looking for ways to help myself in these ways. Some things I do are pretty self-explanatory: getting enough sleep is important! same with eating well and all that stuff.

But some other more novel things help, too: 

Enter: Cassius, service dog extraordinaire! I’ve been partnered with a service dog for three years now, and he helps me immensely with reducing pain, conserving energy, helping me navigate my commute, and providing an awesome distraction from my pain during the workday. He can happily pick things up for me when I drop them, offer counterbalance going up and down the many BART stairs I maneuver on a daily basis (because the elevators are slow and nasty. Bad combination!) and opening and closing doors, drawers and cabinets for me.

During my workday I try to take a decent number of breaks to either plop down in the breakroom or get outside and enjoy some fresh aid and to change up what I’m doing, luckily my job at a library really allows for doing a bunch of different things throughout the day. This helps me alternate what areas are less painful than others. It’s facetiously better to have many things hurt a little than to have one thing hurt too much!
Lastly, taking a bit of time for myself to devompress after and before work is vital – whether it’s reading (it’s quite nice to have access to thus ands of books all the time!) or playing ridiculous computer games (Frozen Free Fall, anyone?) or hanging out with puppies and horses on my hours and days off is vital to my sanity and health.

Working is important to me. It means that I’m contributing to society, making my mark in the workplace, and (every so often) changing people’s lives – and sometimes their perceptions of what people with disabilities can accomplish. I don’t necessarily focus on that, but I don’t argue with it when it happens!

For more tips on Self-Care, check out http://selfcaremvmt.com/

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Packing with PillSuite (sponsored post)

Packing medicine for trips can be kind of a pain. So many choices: to bring the bottles or not? to sort by med or sort by date? how much extra to bring?
As part of the Chronic Illness Bloggers Network I was given the opportunity to test out a product called PillSuite which aims to help with some of these issues.

PillSuite comes with three things: a pill sorter, baggies, and a sealer for the baggies (along with batteries for the dealer, which are included).

I’m going on a short weekend trip, so I sorted my pills into 5 daily slots – I took out the two things full of vitamins as I realized I take one a day so that didn’t make much sense to sort them together!

From the sorter I used the funnel to put each evening’s pills in one Baggie, then sealed it using the cute green sealer (I love the colors they chose!)  
The process of dealing them took a bit of getting used to – thankfully you can re-do it to get the seal complete if you don’t get it right the first time.

I made a Baggie for each evening of my trip, and only have one thing to think about – I need to take one pill half an hour before the other two so will need to carefully store the other pills for a bit.

I’m interested in testing out the baggies during this trip, and will edit this post in a few days with a review of how they work in practice!  

I think this will be great for some trips but won’t replace my trusty resealable tiny baggies for some uses.

UPDATE: I used the PillPacks for my 4 day trip, mostly with success! I had a few that didn’t really close al the way, but I think that was really user error instead of an issue with the sealer itself! It was a little tricky with my medicine regime, since I take them at two times per night and the PillPacks aren’t resealable – but I made it work! Overall this is a fascinating and useful product. Love that they’re biodegradable, too!

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Researching a Rare Disorder on MedNexus (sponsored post)

When you have a rare disorder, Dr Google and Dr Facebook are your friends. Now this is not the most medically-sound method of procuring medical information, but it is sometimes your only option.

As a member of a group of bloggers with chronic illnesses, I was invited to test out a new site for medical information for patients called MedNexus (www.mednexus.io). I’m always up for looking things up (seriously, I get paid to Google random stuff!) so thought I’d try it out.

I typed in Moebius syndrome… which my autocorrect decided to change to Mobius syndrome (incidentally, also correct and the spelling used in Europe). MedNexus found nothing under Mobius, which I thought was surprising. Went back to the search page and typed in Moebius syndrome.  

First of all, I love the interface of this site – nice pretty clean lines and visually appealing either on a mobile device or on a desktop. The first thing on the site under Moebius syndrome was a definition of Moebius mined from the National Organization for Rare Disorder’s information page, a very trusted source with good information: yay!

After that, however, things get a little dicey as far as relevance goes. It picked up 13 published research articles, but none of them were relevant actually. I keep up with new research articles so there is more research out there, it just wasn’t grabbed by this algorithm. The Ongoing Clinical Trials tab didn’t show the Natural History Study I just participated in – which is still listed on ClinicalTrials.gov as recruiting. And the forum posts tab was just… confusingly unrelated. It almost seemed like it was grabbing everything with syndrome in it even though I used quotation marks around the phrase.

So they get big points for using a trusted source for their main information page, but might need to tweak their algorithms a bit to weed out the unrelated information and grab what’s really important. I think they have the right ideas, and it should be interesting to see what comes of this idea.

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