How to Survive the Hospital when Chronically ill:

As I type this, the hospital band around my wrist is flapping against the keyboard,  that’s how fresh my latest hospital release is.  For most people battling an illness, a trip to the E.R. is nothing that really needs to be “navigated” or “survived”.  If you have ME/CFS, or really any chronically misunderstood illness, ending up in the E.R. can be a scary thing.  You just never know how Doctors will treat you, or – how they will treat you.  These are a few small things I’ve learned can make a big difference.

What to Wear to the E.R.:

You’re probably thinking: “who cares?!”  This isn’t a fashion show.  I used to think that too.  But what you wear can make the experience a lot easier.

  • SocksE.R.’s keep the temperature low to help kill off existing germs and keep new ones from breeding.  As a germ-a-phobe, with a not-so-great immune system, I love this policy.  As a person battling a chronic illness, (whose feet and hands become painfully chilled when she’s sick or especially run down) this constant ice box becomes slow torture.  Add in a nice cold bag of IV fluids dripping through your veins and I promise, that chill will become painful.
    If you’re thinking you’ll just ask for a blanket when you get there, think again.  For some reason, these scratchy, paper thin, imitation blankets are hard to come by (I’ve gotten a morphine shot easier than an E.R. blanket).  Even if you are lucky enough to be honored with the presence of one of these faux blankets, I guarantee it will do little to warm you.
  • Slip on shoesif you have slip on sneakers/shoes, I highly recommend wearing them.  1) It’s a lot less exhausting to be able to slide your shoes on and off without having to unlace them.  2) You’ll quickly realize how gross it is to walk across the dirty hospital room floor and then slide back into bed wearing those same socks.  Slip on shoes can act as a perfect slipper whether you’re shuffling around in the ER or are admitted to stay.
  • Sweatshirts:  I never head to an E.R. without at least three.  I usually end up wearing one like a second skin I never take off (note: make sure it’s big on you so you can slide it up enough for the I.V. they will put in your arm).  I put a second sweatshirt over my shoulders (since they need access to your limbs for I.V’s and blood pressure cuffs, 2 sweatshirts will be too thick for them to get a reading).  That third sweatshirt? A perfect pillow if you spend a long time in the waiting room or a little blanket to keep your legs warm.
  • Long sweat pants:  No matter what your ailment is they will make you put a gown on but they almost always let you keep your pants on.  If you’re going to spend 6hrs in a waiting room or be admitted, you’ll be glad you put on warm comfy sweats or yoga pants rather than jeans.
  • Sunglasses:  Lie on your back and stare up at the brightest light you have in your home.  Now imagine 10 of those lights all blaring down at you in the hospital E.R. 
  • Hair Tie / ClipDon’t forget to grab a hair tie, pulling your hair back will be key.  I prefer a seamless hair scarf/headband.  They’re easy to clean, can be worn about 20 different ways, hide a multitude of hair sins and best of all, they are comfy to wear while lying in bed.  Walmart sells them for $2.80 or they have whole sets of them on Amazon. 
  • Sports Bra:  If you show up with symptoms that could in any way be an infection, even if you don’t have any lung symptoms, they will insist you get a chest xray.  This is no big deal if they’ve already made you get in the gown but for some reason, they usually do this process backwards.  You get semi-undressed to do the xray, then redressed, then they bring you back to a room (a mere 3hrs later) to put on a gown. *%&$?! So, consider ditching your bra for a sports bra with no wire to save the step of having to completely change twice.
  • Comfort item:  if you feel there is a good chance you’ll be admitted, think of grabbing something comforting – whatever that might be.  It doesn’t matter how old you are, hospital stays are always unnerving.  That third sweatshirt I mentioned, is also my comfort item.  A dear friend literally gave me the lucky sweatshirt off her back, how do you not feeling better wearing something like that?!

What to pack:

You just never know when you might hear the dreaded words: “So, – we’re going to keep you”.  It never hurts to throw a few things in a bag just in case the trip to the E.R., turns into a stay in the hospital.

  • ear plugs (once you hear the decibel with which they set the I.V. alarms, you won’t trade these for gold!)
  • toothbrush, toothpaste, a brush (a little welcome pack should be waiting in your bathroom when you arrive, after all they are charging you $100 for that $0.10 bag of saline but nope, you get nadda and waiting for family or friends to make it back to the house to get you stuff… well, that’s a crap shoot at best).
  • clean socks & underwear can give you a new outlook on life!
  • your phone and phone charger! The charger is key and what I always hear everyone searching for in the E.R. or hospital. Don’t forget the plug end, just having the USB cable won’t do you much good.
  • your meds.  This will seem odd but this saved me my last trip to the E.R.  It took me 5hrs to be seen by a Doctor.  Yes, 5! While curled up in a ball in the waiting room I began to have seriously bad pain, the kind that makes you thrash & moan (picture a Terms of Endearment moment). Thankfully I had grabbed my meds as I headed out the door and was able to take them to get me through the wait.  The other benefit is: when you feel that sick, basic info they ask you can instantly disappear out of your head, having the pills on you can make that easier.
  • note: I no longer have to grab files as I race out the door, I have my crucial drug reactions, med list, etc linked online to my phone so it’s always at my fingertips but if you don’t, grab anything you might need.
  • your insurance card, I.D. & a little money (hey, it’s easy to forget the crucial stuff in an emergency!)
  • a drink (E.R’s are really cold but also really dry during the wait!)
  • This tip comes from my sister and while patients might not use it, anyone going with you might:  if you have the time/energy, consider downloading your favorite movie so you or your family have something to watch.  Wifi is usually pretty bad in an E.R. and if you end up stuck in a bed in the E.R. hallway like we did, ( no room, no tv, no wifi), your only attempt at sanity might be that you downloaded The Big Lebowski ahead of time!

How to Survive Hospital Doctors:

I really do mean “survive”.  I can’t tell you how many mistakes Drs have made that could have had dire consequences if we hadn’t caught them…

  • When the new doc walks in, don’t give your entire medical story, they won’t listen and it won’t help you.  Give a few sentences that capture the overall picture.
  • Stick to the current issue, focus on that, try to tie whatever they ask about your past, to the current symptoms so you ensure they focus on fixing that and not reinventing the wheel.
  • Double and triple check everything! EVERY THING! Every thing they say, they do, they don’t do.  When in doubt, ask the Nurse, even if she/he gets pissy you’re asking, ask anyway.
  • If you get admitted: ask for copies of all medical tests that have been done on you, preferably every day
    (Most hospitals won’t give them to you.  Yup, that’s right, you can’t get a print out of the blood test they are staring at on the computer screen.  Am I the only one that thinks that’s crazy?  You can get them, they just don’t make it easy (shocking, I know).
    You will probably have to have someone go down to “records” and pay $1 a page to get a copy of your test results.  I highly recommend sending someone down every afternoon to get the previous days test results. I have had Docs tell me time & again my tests were “fine”, “everything’s good”, only to find large red flags once I had access to them!
  • Speak up, speak up again, then speak up louder.
  • Don’t walk out of the hospital without everything you need (this will be tough because they will discharge you suddenly & without warning.  They will instantly make you feel like you are trespassing in the room that was previously yours for 5 days).  Don’t leave, don’t budge, don’t move until you get every single test script, drug script, printed copy of your records, referral or anything else you might need.
    When they hand them to you, review them (yes, I know this feels rude because they will be there staring at you).  I hesitated before doing this last time but did it anyway.  I then had to spend the next 2hrs hijacking the room after being discharged because I kept catching major mistakes and I refused to leave without what I needed!) Once you walk out the doors, getting someone on the phone to give you what they already think they did for you? The battle is endless.

Hopefully, you’ll never need any of these tips but if you do end up in the hospital, I hope you have at least one person like this in your life…

A sister that misreads the precautions posted on your door and spends 25 minutes putting on every glove, face mask, bootie and gown that is on the hazmat cart because she thought she had to “suit up” before entering, so as not to bring in a single germ that could hurt you!  (What made her think she had to wear the gloves only used for surgery, I’ll just never know!) Coco in Hospital Gown
A Mom who decides your I.V. pole is just too boring I.V. Pom Pomsand in her quest to make the 3wk hospital stay as fun as possible,  decorates it with miniature pom poms.

A Dad who just laughs at the chaos your sister & mom create, Pop ER waiting room
as he is googling every one of your “out of range” blood tests (all while wrapped in an E.R blanket freezing his butt off because he didn’t take your advice to dress warmly!)

Or even just a friend who sends you the lucky sweatshirt off her back!

Sure, I may occasionally end up in the hospital but it’s all in the quest to true health, (which I believe is happening) and at the end of the day, I’m far luckier than most too.

The best (free) medical app: track all your meds with no effort, no typing, no cost!

I was truly humbled by the response to my previous blog.  I feel safe in saying we could build a castle out of the pill bottles donated from everyone’s generosity.

While the outpouring was heart warming, I’ll admit it also paralyzed me a little to post again.  I sincerely doubt all those so graciously now following my blog, share my same health conditions so would they care about anything I might talk about? But the more I thought about it, the more I realized, it was proof that so much about health is universal, regardless of diagnosis.

If you’re like me, the pill bottles you’re now donating, weren’t just filled with vitamins to try to live longer.  You are fighting pain, inflammation, your own immune system, you are in a hard core fight and that quest for health can easily be a full time job.
Maybe, like me, you found yourself keeping the empty pill bottles as a way to remember all the crucial data on that little white sticker: who gave you what, when, where, for how long, how many refills… change meds even a few times a year and it’s near impossible to keep it all straight.  My closet was a pill bottle graveyard filled with information I feared throwing away.  Determined to finally clear the ghosts (& the space!) I decided to start writing all the key information off the pill bottle labels and keep them in a file.

After bottle #3 I gave up, shocked and frustrated at how long it took.  I went on a quest to find an app to do all the work for me.  I hate most medical apps, I find them way more work or cost than they are worth.  This app would have to be *free and it would have to truly make this easy for me or the pill ghosts could just continue to haunt those drawers.  It took a lot of trial and error but I finally found a solution – that actually works!

CareZone does the work for you & charges nothing!

(Note: so there’s no confusion, the app is free. I get nothing if anyone uses these links to load the app, I am just trying to make it easier for anyone that’s interested)

CareZone for Android
CareZone for Iphone

1. With CareZone, you simply take the camera on your smart phone or laptop and snap a few pics of the pill bottle (or box) label.  Start at one side, take a pic, rotate, take another pic, rotate, until you’ve gone all the way around the label.Screen Shot 2015-10-21 at 4.26.58 AM
2. Review the pics.
Satisfied?  Is picture #3 redundant or too blurry? Just delete it.
You didn’t get a clear pic of the side effect sticker on top? Add another pic to the file
3. Then hit submit
The photo is sent through recognition software, it takes the text in the photo and converts it into real editable, text in predetermined fields for clarity.
You will be notified when your information has been added into a file in your account.

What’s added? Everything!

*the name of the drug
* generic name
* strength & frequency of the dose
* Doctor’s name and phone number
* pharmacy name and number
* any warning information on the bottle/box
* number of refills
* when the drug expires
~ you name it, it’s added!

What else can the app do:

CareZone App

CareZone App

* remind you to take the meds you entered ( it will pull it right off the pill bottle & create the reminder for you!)
(note: all reminders can be set or turned off easily)
* remind you to reorder the meds
* add notes about anything you want
* create other profiles so you can keep track of what your Mom takes or kids take in case you ever need to tell a Doctor
* keep allergy lists
* current medication list
* want to keep information on a medication you’re not currently taking? Just click “inactive” and it will archive the info for you (I use this one a lot!)

I can’t count how many times I have had to list the meds I am on, what I am allergic to, reference what drug a specific Doctor gave me a year ago, what the dose was that did or didn’t help me on a medication I was taking 3 years ago… it’s impossible to keep it all straight and even more impossible to access it in a 6 inch medical file in the 60 seconds a Doctor gives you to answer the questions.  This app has changed that for me and better yet, I now have another huge pile of pill bottles that no longer need to haunt my shelves “just in case” and can be donated!


Empty Pill Bottles Desperately Needed (Take your meds & help others!)

Pill bottles: they are those translucent orange soldiers that pile up all around us… in our drawers, bags, cabinets… sometimes I wonder – if I had saved every empty pill bottle since I got sick, what would that look like?
Mountains of Pill Bottles
One of the things I have always hated the most about being sick, is you often need more help than you can give.  That’s not always true, but there are definitely days or weeks like that for even the most functioning among us.  I see those specials on tv and think: I want to build a Habitat for Humanity house or dig wells in Africa (this might be a late night, insomnia induced thought but the general sentiment still stands).

Neither of those will be happening in my lifetime, but that’s okay.  There really are other things we can do, all of us, to help other people no matter how sick we are.  Here’s one idea that only requires a bit of energy…

“Medicine Bottles for Malawi” is a project with an idea so simple, it’s brilliant. I’ve tried this myself so I can vouch for how easy it is to do and how good it feels to pass on something you know will help others.

Imagine you’ve walked miles to a remote village or hospital to receive any form of medical care you can find.  You are given the medication you desperately needed and now you have to start the journey back home.  You don’t shake the pill bottle maraca as you walk because there is no pill bottle, heck there’s barely medicine.  The pills you received are wrapped in a tiny scrap of newspaper.

A scrap of newspaper is all the protection your precious cargo has. The more I thought about this, the more I realized it’s a bigger problem than it sounds like: no safe way to carry the meds home when you are most likely walking miles, no way to really protect the meds from moisture, loss, damage once you get them home.  Apparently those orange bottles do more than you think and so can you…

How to Help:Screen Shot 2015-08-20 at 2.43.33 AM

Step 1:
Take your meds and when you finish the bottle, don’t throw it away!  This includes bottles you might receive over the counter like for Advil, Motrin, vitamin bottles, supplements – as long as the bottles aren’t large, send them on! (Large bottles just cost too much to ship).
Donate Pill Bottles
Step 2:
Remove the label.
I find it’s easiest just to peel them off, takes a few seconds, but you can also save up until you have a pile of the bottles and dump them into a bowl of boiling hot water.

Step 3: Snail Mail
Send them off!
I used a large flat manila envelope, it’s cheap & easy to mail.

Address it to:

The Malawi Project, Inc.
3314 Van Tassel Drive
Indianapolis, IN

Tip: Take a photo of that ^ address on your phone & save it as a contact!  When you have enough bottles to send off, you won’t have to log back in here to find the address.  I do this often and it definitely saves some energy to take photos of info. 

Bonus Benefit:
I saw someone online arguing that we shouldn’t send them to Malawi because they won’t be recycled when they are finished being used.  I thought this question was silly since they are so desperately needed there but I like the answer all the same:  Nothing goes to waste in Malawi.  Your medicine bottle, when it’s empty, will be used in 100 other ways.  Imagine you have very little and then think of all the ways a bottle with a sealed lid could be helpful.

The medicine bottles we don’t need or want anymore, that probably lie around in drawers reminding us we need that medicine to begin with, to someone else, it’s a gift.  What better way to use a little bit of energy and send them on!

Poor Sleep Poisons the Brain (Study on Neurotoxin Buildup provides clues for ME/CFS)

The first time I heard lack of sleep could kill you, be the actual cause of your death, I thought it had to be an urban legend; like the Jackalope or Big Foot.  Mythical JackALope

When I discovered this isn’t a tall tale but a very pure reality, I wondered:  How?  How does prolonged sleep deprivation kill you?  And if you don’t actually die, what does prolonged lack of good sleep do to you?  It’s used as a torture technique so obviously, it’s not good.

Besides giving my body (and my poor Mom) some much needed rest, sleep seemed like a useless waste of time to me as a kid.  Then I got sick and sleep became one of my first signs something was very wrong.  It felt like the 23 hour sleeping marathons were my tenuous lifeline to survival, although I had no idea why.

So how exactly is lack of sleep fatal and bad sleep poisonous?

A study a few years ago, showed the brain is no different than a lot of the organs that clean out waste and debris from our bodies.  As we fall asleep, the brain takes this much needed moment of peace and quiet – to clean house, to literally clean itself out.  Sleep, as it turns out, is more crucial than most of us realized.

In a study of mice a few years ago, researchers found the cells in the brain shrink as we sleep.  This shrinkage, creates room and this room allows the brain to be flooded with a dramatic amount of cerebral spinal fluid to wash all the nooks and crannies the brain is full of.  When the mice woke up, the brain cells enlarged again and the flow of spinal fluid between the cells slowed to a trickle.

“It’s almost like opening and closing a faucet,” Nedergaard (head of this original study) says. “It’s that dramatic”.

But what happens if the cells shrink and the brain starts it’s rinse cycle and this “Spring cleaning” gets interrupted?

Neurotoxins (poisons that act on the nervous system) are the “trash” the brain is trying to get rid of every night in our sleep.  But this cleaning cycle is specific and long and if you don’t get enough good sleep, a new study run by Dr. Maiken Nedergaard, co-director of the Center for Translational Neuromedicine at the University of Rochester, found these neurotoxins start to build up.

The process to remove the buildup of toxins in our brains while we sleep, takes six to eight hours… every night.  Six to eight hours of solid, restful sleep is required to flush out the buildup of Neurotoxins in the brain.

“This flushing process is important because what’s getting washed away during sleep are waste proteins that are toxic to brain cells”, Nedergaard says.

Dr. Nedergaard calls this toxin flush, “the glymphatic system” – a process that cleans out the neurotoxins by opening up “hidden caves” in your brain and then using cerebrospinal fluid to push the toxins down through the spinal column.   If you aren’t getting the adequate sleep needed for this flushing process to take place (6-8hrs of good sleep a night), toxins can begin to build up in the brain.
Lack of Sleep Poisons the Brain ME/CFS

This got me wondering, what exactly are the symptoms of Neurotoxicity in the brain?  It turns out, they are like a symptom checklist for every NeuroImmune illness out there:

    •  memory loss
    • lack of concentration  / can’t think clearly
    • confusion
    • problems with sleep
    • language difficulties
    • depression / anxiety
    • fatigue
    • numbness of the hands and/or feet
    • sound familiar??!

So why doesn’t the brain just clean house a little bit, all day long?  Nedergaard thinks it’s because cleaning – takes a lot of energy. “It’s probably not possible for the brain to both clean itself and at the same time [be] aware of the surroundings and talk and move and so on,” she says.

As the toxins build up, it begins to make it harder and harder for the glymphatic system to work properly to flush out the toxins.  As the gymphatic system begins to fail, more toxins build up.  Essentially poor sleep becomes it’s own Catch 22 taking the brain, memory and cognitive functioning down with it.

This strikes a chord with me.  The longer I was sick, the worse my brain issues became, the worse my sleep became, the worse my pain became… and around we went.  What was once spotty memory became truly terrifying holes in my memory, reading a book a week became being unable to read at all, struggling to find the right word became being close to mute, problems with jerky muscle control, became actual seizures.  The longer I was sick the worse my cognitive issues became… as did my sleep.  I never thought of them as connected until I read a high number of people with brain diseases, also have severe sleep disorders as well.

One of the neurotoxins that can build up is something called amyloid-beta.  This part of the study struck me because it says amyloid-beta is found en mass in the brains of Alzheimers patients.  I can’t count how many times I have had friends battling ME or Lyme Disease or a list of other illnesses, say their brain and memory have become so severely impaired, they feel like they have Alzheimers.  They aren’t alone.  At my sickest, I did official cognitive testing and my results were as poor as anyone battling a degenerative brain disease.

“The more beta-amyloid you have in certain parts of your brain, the less deep sleep you get and, consequently, the worse your memory. Additionally, the less deep sleep you have, the less effective you are at clearing out this bad protein.” – Matthew Walker, neuroscientist affiliated with the study

I don’t think sleep is the cause of ME or even the “solution” to curing it.  But I do think the role of sleep in the function of the brain is a much larger piece of the puzzle than many of us realized, and this thought alone really makes me want to take a nap.

New Study: ME/CFS more Disabling than 20 Top Conditions

Hayfever receives more medical Version 2funding than ME/CFS!  Hayfever… that sniffling, sneezing, stuffy head, “achoo” condition is thought to be more serious and receives more help and respect than myalgic encephalomyelitis (ME/CFS)!  When you consider what many people think of this illness, I guess it shouldn’t be surprising.  I doubt any breast cancer patient has ever heard:

“You’re being lazy, you need to exercise”… or “You can’t be sick, you look fine”… or my favorite: “Oh I think I have that too! I get tired after doing 100 errands all day long”.

The message we receive from Doctors, Nurses, Research Organizations, some family & friends & the media is:  ME/CFS just isn’t that bad of an illness.  And if you do happen to be bedridden and look sick and have serious medical complications, well, then you can’t possibly have ME.  That’s what I was told by more Doctors than I could ever count.  I either “wasn’t sick & just being lazy” or I was “too sick to possibly have that fatigue illness”.

A new study, conducted by the Danish, was just released that measured the degree of disability in MECFS patients (ie: how severe is the illness and where do we fall on the scale compared to other conditions).  The results will probably be shocking to everyone except ME patients…

In a list of 21 medical conditions, including: breast cancer, colon cancer, heart disease, renal failure, stroke brain, lung cancer, rheumatoid arthritis, sclerosis, depression, angina, among 10 others…
ME/CFS is listed first in severity of disability.   FIRST.

We have the lowest quality of life.  This comes as no surprise to me or probably any of us battling this illness.  I have friends & family that have battled many of the conditions compared to ME in this report and none of them were as debilitated as my case of ME/CFS.  Not even close.
A quote previously released by the Canadian ME/CFS Consensus reads:

“ME/CFS is actually more debilitating than most other medical problems in the world, including patients undergoing chemotherapy and HIV patients (until about 2 weeks before death).”   Canadian ME/CFS Consensus

That quote was stunning when it was released, but it was still just a quote.  This is the first study I know of that specifically compares the quality of life of ME/CFS to so many of the top illnesses out there.

Who was in the study?

All members of the Danish ME/CFS Patient Association (319 people) were asked to fill out questionnaires.
The questionnaire included something called the EQ-5D-3L (it’s a self reported, quality of life assessment).  From the 319 people, 105 ME patients were identified and gave responses that were valid to participate.

How did they come to this conclusion?

Often, you hear people say that self assessment reports don’t hold as much weight as say, a blood test that shows your “xyz is positive”.  I have always found that to be ironic as they are a much better gauge of people’s condition and severity.  After all, you can test negative for a condition and still have it.  Testing positive for Breast cancer for example, doesn’t show you how severe the disability of that patient will be. 
Patients know their bodies better than any potentially inaccurate blood test and are able to self report, even the smallest detail, to incredible accuracy.

Here are some of the questions patients were asked on the EQ-5D-3L (you checked what applied to you):

Screen Shot 2015-07-08 at 11.39.41 PM

What illnesses weren’t we compared to?

The only thing that struck me as being noticeably missing on the list were illnesses like Lupus and Lyme Disease.  But since the Danish didn’t have a quality of life score for Myalgic Encephalomyelitis, it’s not a big leap to assume they probably don’t have one yet for Lyme either.

A truly new understanding:

Whether you are severely ill or fairly functional, we share the same battle:  getting people to believe we have ME/CFS .  After all, no one could be completely bedridden, on oxygen and a morphine drip 24hrs a day and have MECFS… right?
This study might be small but it feels like a big step forward to me, to finally be able to say “wrong!” when that question gets asked and have a quantified severity of MECFS to back it up!