Sept. 30th, My Visibility Day

As a person with an invisible illness/invisible disability, I often get funny looks when being visibly disabled in public.  We have all heard stories of the notes left on cars parked in handicapped spots claiming “where is your wheelchair.”  I have often wondered if I needed to start wearing a sign in pubic to get any respect.  I already developed some print-at-home cards to hand out to the particularly uneducated, but most people are not bold (read: RUDE) enough to question me openly.

On the days that I can function–at least to the average viewer–as a normal person I often wonder how many people around me are doing the exact same thing.  I look no different than any other person on the street, but only because they cannot see the hundreds of things going on in my body and behind the scenes to make me appear that way.  How many people do I pass on the street that are fighting a battle like mine, putting on a facade like me, to get though the day.  According to the statistics, one in five in the US has a disability– so I probably pass by several everyday, none the wiser

So September 30th, 2016–the Friday of Invisible Illness Week–is going to be my Visibility Day.  The day when I walk around with a sign on, or at least what most of use as our own personal billboard–a T-shirt.

As a person with an invisible illness, Invisible Illness Week has always had a spot in my heart.  Whether it is an invisible physical illness/disability, invisible mental illness/disability, or invisible learning disability, many of us struggle for the recognition and validation of what we go through.  It is one thing we have even common, even if how it affects our lives is completely different.  A week where we can come together and share our struggle together, even if it is the only struggle we share.  It is entirely possible I am the only person in my small town that struggles with dysautonomia, but I seriously doubt I am the only one that struggles with an invisible illness/disability.

So I want a day where I wear the struggles of my life on my sleeve–literally.    I plan on making a shirt with my conditions listed on the front (Dysautonomia & Endometriosis), probably using a hashtag, (cuz we live in a twitter world) and in the color of Dysautonomia since I feel it has the most affect on my life.  On the back, I plan to put “Dont judge a disability by its visibility”.

And I encourage anyone else who wants to have their own visibility day to join me.  Make your own shirt, or wear an awareness shirt you already have.  Make you own on a site like cafepress or zazzle.  Buy iron on letters or the print and iron t-shirt kits.  Heck, take a sharpie to a goodwill shirt.

Whether you have Dysautonomia, Depression, or Dyslexia.  Whether you have Autism, Anxiety, or Angina.  I hope to see you repping your colors and your conditions on September 30th.

*Note-While not all invisible illness are an invisible disability, and vice versa, there is a lot of overlap. So for the purpose of my visibility day, I am including both of them.

 

UV Skins Sun Protective Clothing

I have been pale pretty much since I can remember.  Baby pictures reveal a platinum blond toddler with skin that rivals Snow White.  Eventually, time turned the hair from blonde to brown–but the pale skin tone remained.  I have vivid memories of nasty sunburns when I was a kid, back when it was not well-known the danger that this caused later in life.  Even now, I can burn at a moments notice in situations my darker skinned compatriots wouldn’t even blink at; cloudy with no visible sun–burned, winter month with limited sunlight–burned,  hiding out completely covered in shade–burned (damn you reflected rays, you get me every time).  While my ability to burn has always been top-notch, little did I know, dysautonomia would somehow manage to up the ante.

I am not really sure why or how, but dysautonomia has seemingly managed to make me more sensitive to everything, and that includes sun and sunscreen.  Combine that with the heat intolerance that is inherent to most dysautonomia conditions, and you have a recipe for summer hatred.  And I was resigned to hating summer and become an “indoor girl”. . . until I had a kid.  With the occasional exception, kids LOVE summer.  Sure, you get a pass for the first year or two after they are born, but it is all love affair after that.  Staying inside all summer is just not an option when you have kids.

I was a reasonably dedicated sunscreen user before dysautonomia–after all sunburns hurt!  However, after multiple summers of rashes that I could only assume came from sunscreens, I was about ready to become a night worshiper.  I needed to be able to take my kids outside, and specifically to the pool, in the summer but I was sick of itching for a week because of it.  Fed up,  it was either only go swimming at 8 PM  or later (when I could get by without sunscreen) or figure something else out.

Thus, I turned to sun-protective clothing.  A quick search on Amazon brought up several different companies that offer both short and long sleeve rashguards for swimming.  However, very few of them carry plus sizes, at least for women.  Apparently plus size women don’t need to worry about skin cancer.  Anyway, after striking out with several companies that make sun protective clothing, I googled my way on to the UV Skinz website.

UV skinz offered a variety of sun-protective clothing ranging from babies all the way up to plus sizes for both men and women.  It includes both swimwear and “regular” clothing.  Most importantly, they offered a variety of styles and colors in a women’s plus size–no more making a mens shirt “work” leaving me with my choice of black, grey, or navy.  Pink!  Teal!  Baby Blue!

UV Skinz states it’s clothing is UPF 50+.  For those not familiar with sun protective clothing, UPF (Ultraviolet Protection Factor) is different from the SPF (Sun Protective Factor) we are used to seeing on sunscreen.  Per the American Melanoma Foundation, UPF measures both UVB and UVA radiation are blocked while SPF is a measurement of UVB radiation only. While UVB is the one most often thought of in the ‘sunburn’ sense, there is increasing evidence that UVA plays a role in both skin aging and skin cancer.

Obviously, I have no way of testing to determine if the clothing is, in fact, UPF 50+. There are no FDA regulations for sun-protective clothing. However, all advertising claims ARE regulated by the Federal Trade Commission (FTC). Clothing and accessories that are labeled “sun-protective” should have a numerical value between 15 to 50. No clothing item with an Ultraviolet Protection of less than 15 can be labeled “sun-protective”. If a manufacturer adds a hangtag with a UPF 15-50+ rating to any product, it must adhere to the American Society for Testing and Materials (ASTM) standards.   If it has a hangtag, you can be pretty much assured it has been tested.

For reference, here are the UPF categories and how well they block UV radiation

And a chart showing where common materials used in clothing fall on the UPF spectrum (in general, not in any particular brand)

My first purchase from UV Skinz was the pink long sleeve rashguard (Sun & Swim Shirt).  I wanted to avoid having to put sunscreen anywhere on my arms, as this was the most common place for me to develop a rash with sunscreen.  I ordered my normal size and it fit pretty true to size.  Being a rashguard, it was by nature going to be a bit more snug that other clothes in my size.  However, it was not tight enough to make me self-conscious about my imperfections being on display.  I paired it with a underwire bikini top (worn under the rashguard) and men’s trunks that covered me down to my knees.

(Pink Rashguard/Long Sleeve Sun & Swim Shirt)

The arms are form-fitting enough that they do not move or slide up in the water.  The shirt trunk is less fitted than the sleeves, and it can occasionally drift up in pool.  However, I personally prefer having to occasionally pull it down than have it be tight-fitting around my stomach (aka, one of my “problem” areas). After half a summer of use, the white sleeves still seem pretty white–will make sure to update if that changes.  When wet, the rashguard does show a little bit of my bikini top pattern (a black and white  chevron, so pretty distinct) but does not show anything else.  The white on arms becomes more see-through than the  pink; it is possible an arm tattoo or similar might show through.

(this, but in pink)

After trying out the pink rashguard a few times, and spurred on by a sale for Melanoma Monday, I decided to order the Swim Jammerz and Water Jacket my second time around.  I was not really digging the men’s swim trunks I was wearing and was looking for something I could wear as a lightweight jacket that could cover my torso but would not be too hot.  I got the Jammerz in black and Jacket in teal (dysautonomia awareness color! or at least pretty close).

(Swim Jammerz)

I have really enjoyed the jammerz; they are a big step up from the mens swim trunks.  The color (black) helps makes up for the tighter fit, as does the fact it is fully lined.  My normal size was once again a good fit, though the jammerz have a higher waistline than I prefer (mid-rise is more my taste, probably generational).  I still wear bikini bottoms under the jammerz, though you really do not need to–just never been much for that ‘commando’ feeling.  It provides coverage that goes down just past the top of the knee, which also puts me right in line with the “neck to knees” protection so often advocated for.

(Water Jacket)

I have not had as many chances to use the water jacket yet.  While it is made to use in the water (similar to the rashguard) I mainly got it as a sun protective jacket.  There is enough room in it that I can use it as a jacket (e.g. wear other clothes underneath), but wearing anything baggy does look a little weird.  It works best when you are wearing something not too long and form-fitting underneath.  The jacket itself, however, is not particularly form-fitting and probably even a bit looser fitting than the rashguard.  The teal color does seem to be a bit more see-though than the pink, which is not surprising considering how bright the pink is.

(everyday “normal” UPF clothes)

I have not yet tried any of the ‘normal’ clothes from UV skinz, but would be open to it in the future.  The products I currently have feel like swimsuit material, which makes sense since they are all made to be able to use in the pool.  Whether the ‘normal’ sun protective clothing feels less ‘swimsuit like’ I can not say.  They have some really cute designs for girls, but I am less impressed with what they have for the boys.  And since I have boys, I have not tried any of their kid clothing.  But I would not be opposed to trying it in the future, especially with some design and color updates (dark colors are still hot, even in sun protective clothing).

(they got the kids covered too)

I have definitely enjoyed having my UV skinz swimsuit this summer.  But I am not going to lie, I do get some weird looks.  Nobody has ever been rude enough to say anything, but I catch the occasional double glance.  Whether they are looks of confusion, derision, or envy I will never know.  I would probably get fewer stares if I was on a coast or near a beach, where the problems of long-term sun exposure are more visible on a day to day basis.  Sadly, taking care of you skin is not as popular as it should be, especially among the young (see the entirely idiotic SunburnArt trend).  Often only myself and my kids are wearing rashguards at the pool.  But frankly, I just don’t care.  I would rather gets stares then burn or get rashes from sunscreen.  Dysautonomia has forced me to swallow my pride about a lot of things, but so far, this one has been pretty low on that list.

(putting on sunscreen . . . always a fight)

And, I have to add, I LOVE not dealing with the sunscreen hassle anywhere but my face, and I REALLY LOVE not having to deal with the sunscreen hassle with my kids (who have UPF swimsuits from a different company).  Seriously, even if I didn’t get dermatitis from every sunscreen (or lotion, or perfume, etc.)  known to man, I  would probably opt for the UPF clothing just because it is so much easier than the sunscreen hassle.  Throw it on an go.  No waiting/getting it on 30 minutes beforehand.  No reapplying every 60-80 minutes.  No trying to figure out which sunscreen uses the best non-toxic chemicals while still providing good protection (seriously, google it, it will make your head spin).  It is just easier, which is a big help when energy conservation is the name of the game like with Dysautonomia.

 

UZ Skins UPF50+  Sun Protective Clothing, various sizes and prices, available at www.uvskinz.com

Review-Squid Medical Id from My ID Square

When I first set out to find a medical id bracelet, I knew I was going to need a fair bit of space to fit everything I wanted to convey to emergency workers or doctors.  I also knew that the information on it was likely to change often, as I felt including my long/weird/rotating list of medications was important.  My first stab at a solution for this was the Vital ID medical bracelet.  The paper insert allowed me space and flexibility to write (most) everything I wanted, and it stuck out enough that I felt most emergency workers would notice it.

However, I still wanted to be able to convey more.  I began looking for more “techie” solutions to the problem.  I had seen the USB based medical jewelry, but had been warned EMTs would not be able to access it and Hospitals were too cautious to put foreign USBs in to their computers anymore thanks to the increasing problems with hacking/malware/identity theft breeches (big HIPPA fines).  So that was out.  Then I stumbles across QR code based medical jewelry.

A QR code, for those unaware, is kind of like a barcode on steroids.  In many cases, it allows you to link directly to a specific, online website.  Once pretty obscure, they continue to grow in popularity, and not just for medical ids.  Checked out you McDonald’s cup recently? You will probably find a QR code linking you directly to the nutrition information.  Need video instruction on how to put together your kids new toy? Scan the QR code to be taken to step by step YouTube instructions.  Once you start looking for them, you will start spotting them everywhere.

Their popularity is increasing, partly due to the fact they are pretty much universal (no matter which QR code app you use, they all go to the same place) and partly because everyone plus their dog has a smart phone.  No longer do I have to go home and hop on the laptop to know the fat content of my Big Mac, just scan the QR code with my phone and I have instant access.  As Dean Pelton would say, easy peasy lemon squeezy.

Thus, the point of a QR code based medical id is to link to an online website that has your medical info.

After researching different companies that offered QR code medical jewelry, I decided on My ID Square.  One of the most important factors for me was the lack of a yearly fee–my “Squid” purchase came with a lifetime subscription to the website.  I had also read reviews that said My ID, another prominent QR code medical jewelry company, had problems with their QR codes wearing off and becoming unusable. The Squid can be accessed both via a smartphone with any QR code reader (many to choose from, most are free) or online via a website and pin code.

The variety of accessories that was available on the My ID Square site was a definite plus, though it is easy to see that bracelets/necklaces not from them would work just as well when paired with the Squid.  Taking advice from EMT’s I had spoken with, however, I did not want to make my bracelet too “jewelry like” and thus went with a plain silicone band.

I also liked the clip-on charms they recommend, a way to get across quickly your medical condition before scanning the squid and help draw attention to the bracelet.  The ‘multiple medications’ one certainly fit, but otherwise the closest thing to what I have was the generic ‘heart condition’.  However, then something really cool happened.  After several requests, they company offered a pre-order for a POTS charm.  If they got 12 orders, they would go ahead and make the charm!  Not long after, request and pre-orders for Dysautonomia, EDS, and Gastroparesis were made.  But they had me at POTS, I had to have one.

I waited anxiously for my new squid, charms, and bracelet to arrive.  Seemed like forever, but it was only like 2 weeks.  Since then, I have been very pleasantly surprised how much I like it.  I was somewhat dubious about the silicone bracelet; I was worried it would look silly/tacky for someone my age to be wearing a silicone bracelet.  But I actually really like it.  I, of course, got it in Aqua for Dysautonomia, and was happy how similar to turquoise it is.  And, not surprisingly, it is pretty comfortable.  The actual color of the Squid I wanted was out of stock, but it retrospect I think my second choice color actually works better.

The web profile was easy to activate and simple to input the information.  It offered options for

• Name, age, photo, languages spoken
•  Primary doctor and contact info
•  All other doctor’s contact info
•  Emergency contacts phone, text and email
•  Medication, food and other allergies
•  Surgeries
•  Medical Problems
•  Medical Devices
•  Medications
•  Pharmacy
•  Advanced Directive information
•  Date of last tetanus shot
•  Where your electronic health records are stored
•  Preferred Care Center

It also has a spot where you can put general information that might be pertinent in an emergency, such as where a epi pen can be found, or in my case, to give fluids.  It also gives the option to download or email the information if wanted.  It cannot, however, link to a full EMR record, at least not currently.

As a final neat trick, anyone who scans your squid can press a button to alert your emergency contacts that your Squid has been accessed.  You can set it up so they receive a text, email, or both.

I do wish it had a little more room and/or areas where I could give instructions.  The lovely thing about having a condition nobody has ever heard of is you spend A LOT of time explaining to doctors how to treat you.  I carry summary medical journal articles of my conditions in my purse, you know, just in case google happens go down or something.  I would love a bit more space to include “more information” links about my conditions or detailed instructions from my specialists.

Thankfully, I have not had my Squid scanned yet (by medical professionals, anyway).  I asked a couple of local first responders if they would know what to do if they saw one, and that has been a bit of a mixed bag.  However, they all thought it was really cool after learning about it.  Hopefully as the word about this kind of technology gets out, awareness of how to use it will improve as well.

For me, one of the most comforting facts about having the Squid is that both my husband and myself are able to scan it.  The majority of the times I have ended up in the ER, it is because my husband is taking me in to get fluids after an episode.  I don’t need an ambulance, but I do need a liter or two of fluids.  And if it is to the point I am needing to go in for fluids, I am usually not at the top of my game.  I am often out of breath, brain foggy as all get out, and filling out forms while describing my multiple conditions is not exactly easy.  Now, either of us can just scan the Squid and hand it over.  Could I do the same things with a piece of paper in the purse or wallet . . . probably.  But this is much easier to update (vs. editing and reprinting or someone trying to read my chicken scratch) and my phone is always on me–not always so with my purse.  It did, however, prompt me to finally upgrade to a knock-off brand smartphone.  So I guess I can also thank it for also nudging me into the 21st century.

(My previous phone–most of you probably don’t even know what this is)

In terms of security, someone must scan the QR code or visit the website with your personal pin code (on the back of the squid).  As you can see, I covered my squid with tape before taking a picture as you can access the online profile even by scanning a clear enough picture.   For this reason, I also tend to wear it on the inside of wrist, though I doubt someone could get close enough to scan it without me noticing.  Plus, I figure if I end up on the floor, I will probably be palms up anyway.

According to the company, the info is protected behind  a “firewall protected secure database. Customer information is never shared, sold, or otherwise provided to third parties.” Obviously, if it is on the internet, it runs the risk of being hacked.  But with the mandate for medical records to go electronic as well as several high-profile hacks of big healthcare companies (one of which I know my data was included in), I figure my medical info is probably going to get out eventually anyway.  Heck, the NSA probably knew what I had before the Doctors did.  Even so, I only put information on my profile that I feel pretty comfortable about if it somehow did get out.  For instance, I do not put my address, my insurance information, and for the love of all that is holy, DO NOT put you Social Security number on there.  In my mind, the risk of it getting hacked is pretty minimal, especially since my Squid profile contains at lot less info than some of my other electronic medical records.

The one problem that I had with my Squid medical id was actually a problem with the POTS charm I was so excited about.  Unfortunately, after a few months, the ‘POTS’ started to rub off of the charm.  I contacted the company to let them know about it, and they reported that there appeared to be a defect in the manufacturing process, and that others had reported similar problems with their POTS charms.  The offered to replace the charm with a new one after they finished switching charm manufacturers in a few weeks.

I am happy to report that they did replace the charm, and it now seems to have some sort of protective coating to prevent it from happening again.  They replaced and mailed it free of charge, and even emailed afterward to make sure I was happy with it.  So A+ for customer service!

Overall, I am pretty pleased with my Squid medical id.  However, I will add that I do not exclusively wear my Squid.  I also continue to wear my Vital Id bracelet as well.  I figure by wearing both, I have all my bases covered.  I realize not everyone knows what a QR code is, and rural emergency responders are not always issued smartphones as part of their job.  Indeed, in my mind, I keep my traditional medical id around more for the EMTs/field responders, the Squid for the emergency room/hospital.  However, I figure if we are talking about emergencies, the more options covered, the better.

Squid medical id’s by My ID Square, available in both a charm and as a dog tag.  $58 at http://www.myidsquare.com/pages/squids-square-ids-that-connect-to-medical-profile

Bonus: Sales of the Dysautonomia charm benefit Dysautonomia International

Review–Travelchair Slacker Chair

Pretty much anyone with any form of Dysautonomia can talk to you about the importance of being able to sit when needed.  While there are many different forms of Dysautonomia, as far as I know, pretty much all of them have issues with standing for too long.

Thankfully, much of the “regular” world also likes to sit.  More often than not, if you are inside you can often find somewhere to sit.  This can be a bit more complicated when outside.

If push comes to shove, you can always pull up some floor/ground.  However, this is often not a particularly nice or hygienic option.  So, as much as I enjoy sharing some space with ants and the like, I have learned to bring a seat along with me when I anticipate a situation with limited seating.

Like everybody else in the world whose kids have ever played an outdoor sport, I have bag chairs.  However, the size and weight of lugging those over long distances can get old very fast, especially when you have dysautonomia.  Thus I began my search for a seat the was small and portable.

I finally decided to try the Travelchair Slacker Chair.  It was small, lightweight, and could hold up to 275 lbs–so anyone in my family could use it.   They only had plain black when I bought mine, but now several more “fun” colors are available.

The seating area is not particularly large and is triangular-shaped.  This pretty much requires that you keep one of the “points” of the chair at the front between your legs with the “back” of the triangle for your derriere. This is not as comfortable as a more traditional stool–not really even close, honestly.  But it results in the stool needing very little space to work, and in turn helps it close up very compactly.

When folded it is quite a bit smaller than other chairs I have owned, but I would not say it was the size of a newspaper like it boasts in the description.  I would guess about 2 feet or slightly under in length when folded.  The circumference is pretty compact when folded as well–a reviewer on Amazon put it as 7 inches and that sounds about right.  It has a velcro strap for keeping it folded and an adjustable strap for carrying (or slinging on to my Rest-n-Roll cart).

As stated, the seat is definitely not the most comfortable ever.  However, it is better than standing.  I doubt I  have spent more than an hour in it at one time, and while certain parts of your posterior may need a little rubbing to get all the feeling back (especially if you have a larger one like me), it was manageable.  And while I would not want to spend a whole day in it, the times I have used it when starting to feel unwell, it was enough of a seat to give me a chance to calm my body down.

In a surprising turn, the places I most often use it are indoors.  The most common use is visits to my kids preschool where all the chairs are just so tiny and low to the ground.  The other often used place has been at home.  It is so easy to fold and lightweight, I sometimes find myself just taking it with me from room to room when I need to sit while doing/in between housework.  It is small enough I can fit it back by the washer/dryer when moving clothes, in front of the pull out freezer when I need to dig to find stuff, or in the toy room when sorting though/cleaning toys.  I had really anticipated more outdoor use, but that has not been the case.

The stool sits pretty low to the ground.  Not enough to give you that “OMG I am falling” feeling when you sit in it, but enough that it could affect a bad knee if you had one.  You would probably feel a bit low if you tried to sit at a normal table to eat, but not low enough that eating at said table would be impossible.

All in all, it is not a bad little seat–just not for long sitting-marathons.  It is small, lightweight, and reasonably easy to pack and take with you when needed.  More often than not, I am glad I brought it along.

Slacker Chair by Travelchair $18.40 from Amazon and other retailers.

 

Review–Rest n Roll Multipurpose Cart

I have pretty much always been a heavy packer–been teased by my family about it pretty much since I can remember.  I was never a girl scout, but I have always embraced the “be prepared” motto–maybe even a little too much.  And after having kids, my over-packing habit increased ten-fold.

When the kids were young enough to be in strollers, this was not too much of a problem.  It is surprising how much you can pack into a good-sized stroller when motivated.  However, as children do, they grew up and are too big now to be pushed by mom.  However, my desire to keep a bag full of “in case” essentials on me when out and about has not really diminished.

Then, enter Dysautonomia.  Dysautonomia pretty much DEMANDS that you be ready for the unpredictable.  As I explained in my Mobile Dysautonomia Bag post, I have a small-ish bag full of “in case” supplies in my purse at pretty much all times.  However, that bag, on top of all the other mom-bag stuff, makes my purse a contender for the heavyweight champion of the world.  It is not too much of a problem when going to the store–purse immediately gets dumped into the shopping cart.  However, a day in the park, zoo, or any other place where I will be more than be a few steps from my emergency way-station (aka, my car) requires some extra planning.

Besides needing to keep my crazy heavy purse on my person (and the hubby so hates when I ask him to carry it), I need extra powerade/water, sunscreen, bug spray, extra snacks for the kids, my mini travel seat, etc. etc. etc.  Basically,  I need a smaller version of the trunk of my car.

Enter, the Roll n Rest Multipurpose cart.  It is a metal frame cart with attached nylon/canvas bag.  The bag has a large main compartment and a smaller front pocket that is lined in cooler-type material, presumably to keep cold stuff cold.  It has mesh pocket on each side as well as a long attached sleeve for holding the included sun umbrella (not on all models).

On the back side, it has a fold down seat.  The seat is plastic, not fabric, and has a rather generous seating area for what it is.  The handle is adjustable to two heights, and has a padded handhold.  Inside the main compartment is a snap on/off bag and two small pockets on the back of the bag.  The bag is removable for washing, though this is not the easiest task.

I was quite excited when I first saw this product–it seemed to fit several areas of need for me; the ability to cart along a bunch of stuff while also always having a seat with me.  The reviews were generally positive, but some mentioned issues with wheels coming off.

First thing I noticed after arriving is that it is heavy.  If you have issues with lifting or muscle weakness, you will likely have a problem with this cart.  It is clearly made of a solid metal, but that also adds weight.  While, in general, lifting too much weight wears me out, the quick lifting required to get this in and out of the car is not a deal breaker for me.  But it is something to be aware of.

The main compartment is decently sized, even if I could deal with it being a big bigger (this is probably mostly me and my crazy over-packing).  However, since it is a tall and skinny compartment, sometimes creative packing is required.  In addition, if you need something at the bottom, you are going to have to stop and take a bunch of stuff out to reach it.

I have never really used the front cooler pocket for keeping anything cold.  Honestly, it just does not seem sturdy enough for that.  Unless the main compartment is pretty full, loading up the front pocket tends to make the whole bag either lean in or lean out.  I mainly use the front pocket to keep smaller things (keys, phone, sunscreen, etc.) readily accessible and keep a cooler in the main compartment.

The version I got came with a  sun umbrella that can click on to either side near the top of the handle.  This is another feature that I have not tried yet (had this over a year now).  The main reason I have not tried it, however, is that the pocket that is supposed to hold the umbrella ripped in the first few weeks of owning it.  I cannot say the ripping is entirely on the product, but I would say that–in my opinion–a design flaw led to the issue.  The umbrella, when in the designated pocket, sticks out so far past the end of the bag, it just kept getting caught everything as I would take it in and out of the trunk.  Finally, it caught one too many times and tore.  Ever since then, I no longer store the umbrella with the bag (despite safety pinning the torn part of the pocket).  This usually means that I forget to grab it when heading out, so using the umbrella is not an option.  It is a nice thought, having a sun umbrella, but I just have not really had a chance to make it work.

I could use the handle being a bit higher.  Even on the highest setting, it still feels a bit low for my liking.  However, as not far off 6 ft. tall, I am taller than your average dysautonomiac (or woman).  That said, it is not low enough to be uncomfortable when I use it–just would prefer a bit taller.  If you are much taller than 6 ft, though, it could be an issue.

Only once have I ever encountered the wheel issue some reviews spoke of.  There is some type of clip that appears to help attach the wheel.  I never really figured out what to do with these clips, or how they helped.  But after the first lost wheel incidence, I apparently did something correctly with them as it has not happened since.

The cart can be kind of heavy when wheeling it around.  Not nearly as bad as carrying all the stuff, but enough that I notice the difference–often with a somewhat elevated heart rate in response.  Usually I will ask my husband to roll it when possible.  It is hard to tell how much of the weight is related to the cart itself and how much is the stuff I pack.  I pretty much always load it up, often adding extra bags to hang off the top.  I have never rolled it around as just the cart–if I only need to keep a seat with me I take my tri-folding stool.  However, the cart seat is much more comfortable than the tri-fold stool.

Despite some of its problems, I find taking the cart is worth it to me.  Even when I have to pull it myself.  If I am willing to go out and about, more than likely I am already having a good day.  Many times the extra supplies I bring are not really necessary.  But it makes me feel better knowing I have them if I need them.  And being the mom that remembered snacks and drinks always makes you popular.  The seat is surprisingly comfortable, as least as far as portable seats go.  And it appears to be a sturdy seat, as I am not exactly small but have had no issues.  The seat folds up and down in seconds and has a sturdy snap to keep it in place.

I do get glances from others when out and about but I can never tell if they are thinking “what weirdo uses a cart” or “wish I would have thought to bring one”.  In my (rural) area, everybody depends on cars so seeing someone walking about with a cart if not very common.  It is entirely possible in a larger city with lots of walking and mass transit it would not stick out at all.  However, for me, it is a much less self-confidence denting way to keep a seat with me than using a walker or cane.  Someone my age with either a walker or cane always attracts unwanted attention.

Overall, for me, this product has been helpful.  But I can see how it might not be for everyone.  The weight could be a serious issue for many.  I needed the extra weight-carrying capacity of the heavy metal frame.  However, I believe there are less “heavy duty” versions out there if you are a lighter packer (and smaller person) than me.

I originally got Rest-n-Roll Multipurpose Cart on ebay, but the seller I bought it from is no longer in business.  I believe that this store is the only one currently selling it.  QVC has had it off and on over time, but it currently out of stock there as well.

Rest-n-Roll Multipurpose Cart, 29.95 + Shipping at http://qualityhomeproducts.net/product/rest-n-roll/

My Mobile POTS/Dysautonomia Bag

To say that chronic illness requires you to make some adjustments in life is a bit of an understatement.  Each individual must learn how to adapt to their new situation, something often easier said then done.  As it turned out, My type A ‘must plan everything’ personality is not particularly compatible with having a condition like Postural Orthostatic Tachycardia Syndrome.  The last several years have been a lesson on learning to live in the moment and realizing plans are made to be broken.

    

That said, some vestiges of my ‘plan down to the minutest detail’ personality still survive.  As such, I have a “POTS Kit” I try to keep with me at all times–because, as we all know, stuff happens.  This is somewhat easy for me as I have always been a “big purse” girl.  As such, I have a lot of space to work with.  So, here is what I keep in my POTS kit, which fits into my purse, backpack, messenger bag, or whatever I am using to keep my stuff on me at any particular moment.

 

Contents:

• Wrist Blood Pressure Cuff
• Pulse Oximeter
• Powerade Zero Drops
• Pedialyte Sticks
• Elete Electrolyte Drops
• Thermotabs (blue pill box)
• 3 Day Supply of all my medications (My Pills box)
• Back-up Medical ID
• Medical Journal Summaries of my Conditions (not pictured, kept separate in purse pocket)
• 8 oz bottle of Powerade Zero
• Mini bottle of tums (for those bad tummy times)
• Wisps mini disposable toothbrushes (for when bad tummy times come up for a visit)

Do you have a portable “kit” you keep in case of emergencies when out and about?  What do you keep in yours?

Review–Mio Alpha Strapless Heart Rate Monitor

So, I am getting this review out late enough that there is now a Mio Alpha 2, as well as a Mio Fuse, which are all more recent that what I am currently using.  However, I am going to review my Mk 1 Mio Alpha anyway.  Obviously, I cannot say how well it translates to the more recent versions, but take from it what you will.

I have been using the Mio Alpha for more than a year now.  For those that have not read my primer on heart rate monitor watch, the Mio Alpha uses an optical sensor to measure and track heart rate.  This is the same technology that is used in the pulse oximeter, aka, the little pincher contraption that nurses put on your finger to make sure you have enough oxygen in your blood. In addition to your blood oxygenation, however, it can also indicate your heart rate.

The Mio Alpha will not track your oxygen level, however. It is strictly heart rate.  It can track your heart rate in two modes.  First, a “passive” tracking where it displays your heart rate but notifications are off.  The second, “active” mode, you can set a high and low boundary for your “target zone”  and it will alert you if you go above or below these limits.

I find I more often just leave it in passive monitoring, mostly because the beeping when out of zone can get pretty annoying.  I have been at this long enough to recognize the feeling of when I need to check what my HR is doing.  You can also press a button to toggle between the time, heart rate, and a stopwatch if you prefer not to leave your HR visible for all to see.

In terms of HR accuracy, I have found that the Mio Alpha is usually accurate . . . eventually.  But sometimes it takes a while to get there.  Too much wrist motion seems to throw it off; not so much the swinging of the arms motion (like jogging) but more the wrist motion of folding clothes, typing, washing dishes, etc.  It is usually temporary, and rights itself once I stop, but it is pretty common.  I have caught some heart rates on it that I can physically count and know that the watch is off; I usually attribute these to too much wrist motion.

Also, unlike chest strap based HR watches, it is unlikely to catch the rapid spikes in Heart Rate (HR).   I know I can get rapid and dramatic rises in HR when I change positions, move my arms around too much, or sometimes even breathe deeply.  They generally don’t last long (generally under 30 seconds, many times under 10).  These, however, have proven to be beyond what the watch can catch.  If you are trying to catch every little (or big) up and down of your HR, the Mio Alpha is not going to do for you.  The watch takes several seconds to adjust to ups and downs in HR, and sometimes the spike is over before it can adjust.

Cold seems to affect the performance as well, though this is likely more me than the watch.  I know many people with dysautonomia also have Reynauds, or at the very least have some extreme blood vessel constriction/dilation in the hands.  But when outside in the snow, it did have more trouble keeping track of my HR.

Finally, I noticed one last issue with the watch, and it would probably not be a problem for most people.  However, I have the flavor of dysautonomia that results in wild swings in blood pressure, both systolic and diastolic.  This can result in pretty crazy pulse pressures, ranging from 60+ to 11.  While, in my experience, these odd pulse pressures are pretty transient, they really screw with the watch.  Not really surprising, considering how the watch works.  Typically, I find when my pulse pressure is low (indicated by a weakly detectable pulse) the watch thinks I have a really low heart rate (like 40-50’s) when I can clearly feel that it is higher than that.  While I know that the HR is inaccurate at times like this, it is helpful in that it indicates (albeit indirectly) that my blood pressure is struggling to maintain balance, and it might be time to find a seat.

Now that I have expounded of the flaws of the watch.  Let me tell you what i like.  I LOVE not having to wear a chest strap. LOVE, LOVE, LOVE.  I can wear the watch all day.  It can still go all day on one charge, even on active monitoring, after a year of use.  No annoying rashes from chest straps, or having to take the chest strap on and off as needed (since it kept giving me a rash with all day use).  When it comes down to it, it is just plain easier for me to use.  The trade-off is that I know it misses some HR spikes and drops.  In the beginning, I wanted to know what my HR was doing each and every beat.  However, 4 years later, that is not so important to me anymore.  I mainly need to know if my HR is going high or low, and if it is staying there.  I now know that a 10 second spike up to 160 bpm is not really going to cause a problem.  However, if I spend a couple of minutes up in the 160 range, I know I am at risk of syncope or pre-syncope.  Thus, having the watch alert me to prolonged high HR is my early warning, so to speak.  Secondly, it offers a certain piece of mind, especially when out and about.  If I feel that familiar wave of light-headedness, I can check the watch and see the my HR is not in a danger zone, yet, and I just need to stop for a moment and recover.  Could it be a bit of a crutch for me, . . . probably.  But I figure if it helps me out the door, there are worse bad habits to have.

I am not going to lie, the Mio Alpha is not the prettiest watch around–though most HR watches tend not to be.  Even with the new purple color, it is still a pretty masculine looking watch.  Just comes with the territory, unfortunately.  Not exactly dainty, either.  It also lacks a backlight for checking the watch in low-light situations, a pretty annoying feature actually.  But I believe the Mio Alpha 2 has remedied that problem, as well as added step tracking, calories, etc. that many of the activity trackers on the market now have.

It also has the ability to sync up to your smart phone to track heart rate via bluetooth+.  I do not have a phone capable of doing this, so I am not able to keep and record my HR patterns.  To me, this was not a big deal as I was mainly only interested in real-time heart rates.  However, if this is important to you, make sure you have a compatible device.

Finally, the customer service I received from Mio was pretty good as well.  The charger for first watch I  bought had an issue and frequently refused to actually charge the watch.  After contacting them, they asked me to send the charger and watch back, after which they would send out a new one.  I had to pay return shipping (which was annoying) but nothing for the new watch.  Later, just before the one year anniversary of me getting the watch, I had a side button break.  Once again, Mio completely replaced the watch with the only requirement that I send back the defective one (at my expense).  Do I think they should have paid the return shipping . . . yes.  But in this day and age, customer service has become a rare commodity, so I will take it.

One final note.  As far as I know, the Mio Alpha can only be charged via a computer USB port.  I am on the computer all the time, so it is very easy to plug it in and charge.  However, if you rarely use or don’t have a computer, this could present a challenge.

Mio Alpha $149, available at Mioglobal.com and various other retailers

 

Invisible Illness & Invisible Disability Signs

For those who follow my blog, Pinterest, or Facebook page, you have probably already seen these.  When I first had the idea to create some home-printable business cards for awareness, I wanted something that got the point across that even though I look fine, I have a disability.  The wheelchair, of course, is pretty much the universal sign of disability.  The problem is, I do not often have to use a wheelchair.

On my worst days, yes, I may need a wheelchair.  Other days, I may use my rolling cart with a seat.  Still others, I may be perfectly fine just walking by myself.  Dysautonomia is like a box of chocolates, you just never know what you are going to get–it can vary from day to day, hour to hour.

However, that reality does not fit well in to  society’s perception of disability.  You either are or are not disabled; no one believes it can be a transient state.  Yet for millions of those with chronic illnesses, it CAN be a transient state, or at least a varying one.  People don’t understand why one day you can be at Nordstroms shopping like a normal person, and the next day at Walgreens in a wheelchair.  And without one of the universal signals that conveys a reason for needing assistance (e.g. grey hair or an appendage in bandages) one is likely to get strange stares at best, and nasty comments at worst.

At one point, I was actually considering buying a walking cast to wear when I felt I needed to use a wheelchair or mobility cart at the store.  If I was wearing one of those (despite the fact I did not actually NEED it) I was unlikely to be bothered or questioned.  I never did buy the walking cast, mostly due to the expense, but also because I felt I should be strong enough to defend myself and my invisible disability.  Yet I found myself just avoiding leaving the house all together; the thought of possibly having to deal with mean, ignorant people while also feeling like crud was just too much.

Thus, began my search for an image that conveyed that though I look “normal,” I have “unseen” issues that affect my abilities.  I did not want something sarcastic or confrontational, even though I could definitely identify with those sentiments.  And I did not want to go into too much detail about my particular condition.  I wanted something professional, quickly identifiable, and universal.  Because, sometimes, I just don’t feel like explaining my entire medical history since no one has ever heard of what I have.

Best I can tell, there does not seem to be any universal symbol of invisible illness or invisible disability.  There are some for individual situations–such as hearing impaired or blind–but nothing for a general “my body just does not work right.”  I really like this one:

But A) the image was intricate enough it did not work well as a small image on a business card and B) it still used the wheelchair, something that not everyone with invisible illness and disability uses.  Thus, I made my own.  Working with symbols that already had widely known meanings, I decided to put the Rod of Asclepius (not to be confused with the Caduceus) into the widely used signs for Man and Woman.  I probably could have just used the Man symbol, as it seems to be the default, but as a woman with an illness that most often affects women, I just kind of liked the idea of a gender specific one.

I spent a lot of time trying to decided whether to use the Rod of Asclepius or something else.  I even focus grouped it on a couple of my chat groups.  While not all invisible disabilities are thought of as “medical” in the same sense that most invisible illnesses are, it seemed to me that a lot of them were at least biological in nature.  Thus, I felt that Rod of Asclepius was the most representative symbol that was widely recognizable.

So, a little paint action later, I had my symbol.  I made one for both Invisible Illness and Invisible Disability, as I know some with chronic illnesses have issues with the “D” word (I know it took me a long time to embrace it).  I made generic ones, both man and woman.

And later made versions that also include mentions of specific conditions so I could continue to raise awareness for both my condition and invisible disabilities/illnesses in general.

I keep the ones I have made on my Pinterest page, and have posted a few of them here.  While I don’t ever expect them to receive wide-ranging recognition, anyone who wants to is free to use them in hopes of conveying their situation to others.  They are available free of charge for personal, non-commercial use.  Any other uses, please contact me first.

Also, if you are interested in a sign with a disease or condition not already available on my Pinterest page, please feel free to message me or comment below, I would be happy to make it for you.

STUFF Post–Medical ID Bracelets

I frequently see individuals with Dysautonomia, and chronic illnesses in general, asking if they should be wearing a medical id bracelet.  While it is an individual choice–between you and your doctor–I personally chose to wear one.  In case it hits the fan, I want the medical team working on me to A) know some basic information about what I have and B)  know how to contact my regular Doctors since it seems pretty much nobody knows about Dysautonomia.

So, here is the first in what I am calling my STUFF postings.  Listings and links to stuff I have seen mentioned, recommended, etc. in relation to dysautonomia.  Just because I link it, does not mean that I have tried it or endorse it–I only review things I own or have tried (see the reviews section).  This is mainly to serve as a collection of possibilities and nothing more.  If you know of something you think should be on this list, please feel free to add it in the comments.

Special note about medical id bracelets:  recently I had the chance to speak with a couple local EMT’s and firefighters.  I asked about regular medical Id’s vs. more interactive ones (web-linked, phone-in, etc.).  While this is opinion of just a few, they mentioned the traditional ones are more useful for them in the field (unlikely to scan or call in from the ‘bus’) but that the medical team once you get to the hospital may find the interactive ones most useful since they contain much more information.  They also mention that as medical alert jewelry looks more jewelry like, they are also more likely to mistake it for jewelry and not notice it.  Their advice–we know they are ugly, but the more obvious that it is a medical id bracelet, the better. 

 

Traditional Medical Id Bracelets/Jewelry

• Vital ID  (see review)

Uses small folding paper insert instead of engraving for medical information

https://www.vitalid.com/product-category/medical-id/

• Sticky Jewelry

Large selection of pre-printed and engravable medical jewelry including bracelets, necklaces, and charms

https://www.stickyj.com/medical-alert-jewelry

• Lauren’s Hope

Possibly one of the largest selections of medical jewelry on the internet.  Mostly engraveable.

http://www.laurenshope.com/

• American Medical ID

Engravable bracelets and necklaces

http://www.americanmedical-id.com/

• Road id

“sporty” engravable bracelets and shoe id’s

https://www.roadid.com/Common/Catalog.aspx?C=RoadID

• Creative Medical Id

Engravable bracelets, dog tags, charms and watches

http://creativemedicalid.com/

• SOS Id via Keep Safe Jewelry

Insert that folds into compartment on stainless steel bracelet

http://www.keepsafejewelry.com/sosid.htm

• ID on Me

Insert that fits into compartment on bracelets, key rings, or tags

http://www.idonme.com/index.php

•  N-Sytle ID

Engravable bracelets, necklaces, dog tags & charms.  Has a free template for a printable wallet card

http://www.n-styleid.com/

• Mediband

Specializes in silicone medical ids. Many pre-printed, but also have the ability to make a customized one.  Has multiple language and engravable jewelry as well.  Can add a separate MedibandPlus membership (see below)

 http://www.mediband.com/us/

•  Hope Paige

Mostly engravable medical id jewelry, including the ability to design your own.  Has a few silicone/write on bracelets as well as the 4id line that includes some unique write on medcial ids.  Has a few pretty neat accessories as well as a large selection gears towards kids

https://www.hopepaige.com/

 

 

 

 

Interactive Medical Id Bracelets/Jewelry

• My ID Square (see review)

Uses individual QR code and/or website with pin # to link to medical information website.  Includes lifetime membership with Squid purchase (no yearly fee).  Also carries traditional medical tags and “clip on” medical charms.

http://www.myidsquare.com/

• Medic Alert Foundation

Bracelets and necklaces have 1-800 number that connects to 24/7 operator center with your medical information.  Purchase includes one year of telephone service, renewable for a yearly fee after that.

http://www.medicalert.org/

• My ID by Endevr

Uses either a QR code, phone number, or website with pin # to access medical information.  Purchase includes one year of service, renewable for a yearly fee after that

http://www.endevr.com/id-bracelets/myid

•  MedibandPlus

Subscription gives you a code to access your medical conditions, allergies, medications, blood type and immunization records at MedibandPlus website. Also has contact info for physician(s) and emergency family and friends.  Yearly fee starting at $7 for personal or $35 for family.  Note: Australian company, so phone customer service is on Australian time.

http://www.medibandplus.com/

 

 

Note: I have not included any medical id jewelry that uses a USB to store medical information.  I have been informed by several sources that many medical facilities now refuse to insert foreign USBs into their computer systems over fear that they may contain viruses or identity theft malware. 

 

Did I miss one?  Please add it in the comments below.

 

 

Dysautonomia Educational Business Cards

Ok, so I have been super MIA for the past year.  Ended up trying to go back to work, but that did not go well.  I am now back to not working while trying to get my symptoms and my life back in order.  However, the extra recliner time has given me a chance to get back to my blog and back to some other projects I have wanted to start.

One of those projects I have been working on is a business card that I can hand out at times when people are curious (or, let’s face it, sometimes downright mean) about my limitations.  People have a hard time imagining that someone under 30 could have an illness that leaves them with significant limitations, but still look perfectly normal.  It is the bane of the Invisible Illness crowd—“but you don’t look sick”.  Chronic Illness Memes abound about how hurtful, dismissive, and downright rude that saying can be.

 

(Sorry for the blurry pics)

Yet, I hear a story at least once a week–via the news or in my chat/Facebook groups–about another person with invisible illness or invisible disabilities being accosted for parking in a handicap spot (with a legal placard), using wheelchair or mobility carts at stores, etc.  It is a tough spot many of us will find ourselves in a one point or another.  While I am lucky that all of my inquirers so far have been kind and curious, I have caught the judgmental stares on the faces of others.  I know it is likely a matter of time before someone confronts me in a not so friendly manner.

When I imagine this likely confrontation, I can envision two scenarios of how I would react.  In the first, I start crying on the spot, or hurriedly try to make it back to the car before crying.  In the second, I get really mad and starting yelling.  Neither of these reactions are likely to result in positive outcomes, either for the ignorant commenter or my heart rate and blood pressure.

Now, when the inevitable questions come, I hope to just reach into my purse and pull out one of my business cards to give them.  If they are mean, I can hand it to them and walk away—biting my tongue if I have to.  If they are friendly, I can stay and inform them about Dysautonomia/Invisible Illness, yet still leave them with something they can take home and follow up on.    A lot of my life now comprises being prepared for when things go wrong (I keep a Dysautonomia “kit” in my purse at all times) so this is just one more thing I want to be prepared for.

So, below are my homemade business cards.  They are in a pdf for anybody who wants to download them and print them for their own personal, non-commercial use.  I also have them in a Microsoft Word template if you want to customize them to your own particular situation—contact me if interested.

I also have a collection of both Invisible Illness and Invisible Disability signs posted on my Pinterest page.  Will probably end up printing up one of the Dysautonomia Signs as a sticker to put on my wheelchair (also and Avery print at home kit for that as well!) Once again, feel free to use for personal, non-commercial use.

med cards front 2

med cards back 2

 

How to Print at Home Instructions:

These cards are formatted for the Avery Business Card Template 8371.  The kit I used is the Avery White Business Cards 100 count for Ink Jet (28371), approximately $4 at my local Walmart.  I printed them using my personal inkjet printer (aka, these are not professionally printed)

The template comes in a front and back form.  Remove all other paper from your printer and run though once printing the front of the cards template, then flip over and print using the back of the cards template.

This allows me to print 10 business cards at a time.  I prefer this flexibility in case I want to change information on the card at a later date.  It also means I can print a small quantity without needing to engage the services of a professional printer.

Note: The back of the card has a QR code that is linked to the information page of the Dysautonomia International website.  Most smartphones already have or are able to download a QR scanner for free in their respective app stores.  However, those of us still working with “dumb” phones (raises hand) may not have access to it that way and would need to go home and get on the computer.