Category: Assistive Technology

Life Hacks: Spoonie Edition

   A friend of mine suggested I write a post about this and I live to please but really not sure how many good ones I can come up with. Eh, should be fun. Life hacks and good products for spoonies in no particular order:

  1. Invest in non-bathing bathing supplies
  • dry shampoo: greasy hair is gross, showering is an olympic sport sometimes and this stuff is the bomb.com. I recommend this brand. Also super great if you’re in the hospital and don’t want to wrap IVs etc
  • wipes: same purpose but for the rest of your body. Also nice to get ones with aloe so you don’t become all dried up. I like these.

2. Keep a to go back stocked in your room/car in case of apocalypse or other unexpected events.

basically if you don’t look like this you
aren’t doing it right
  • change of clothes with warm layered option (don’t forget extra underwear)
  • extra day of meds
  • snack if you eat food
  • flashlight
  • KT tape and medical tape
  • eye mask for sleeping/blocking light
  • wipes
  • long phone charging cord or cord with power bank thingy (can never reach outlets in ERs)
  • carabiners, duct tape and zip ties (1000 uses)
  • water
  • first aid kit

3. Glass water bottles

  • this is kind of a weird one but especially for POTSies, who basically need to constantly drink water to survive, this is a good one
  • why: easier to clean, better for putting ice in, won’t give you cancer or whatever BPA does to you, durable, taste better
  • also recommend getting one with a straw, easier to sip if not upright, and don’t spill as much if you’re a spazz
  • This is the one I have an LOVE! I’ve dropped it hundreds of times and the straw doesn’t require a lot of mouth strength to drink out of (#edsprobs)

4. PillPack

  • Pillpack is a mail order pharmacy that pre sorts and packages all your medications and supplements and ships them directly to you. I have been using them for about a year now and love it!
  • they call your docs for refills for you
  • they accept most major insurance companies
  • pay the same copays as you would for CVS, Walgreens, Safeway etc and that is it
  • great customer support and online portal
  • billing options for credit card automatic/not, FSA/HSA etc
  • medication remind app
  • don’t have to spend time sorting meds (or wrongfully doing so)
  • they do my supplements as well as RX


5. Medical alert bracelets/information

    • I have spent many years searching for the right type and run into the same dilemma often: classic medical alert (chain and metal with star of life) is recognized but limiting due to allergies, lack of engraving space, or constant changing information vs classier ID or EMR (electronic record) system might not be recognized by EMS.
      • NOTE: after many talks with EMS friends countless have said they’re only trained to look at wrists for IDs
    • I have implemented a somewhat overkill system but I think its finally working:

    • I use the MyID system for my EMR/bracelet/wallet card. It can be accessed by anyone with a QR reader, smartphone, computer, or phone. It is paired with an app/website portal that can be updated whenever and offers options to upload files, notify emergency contacts, write explanations of your rare and weird medical conditions and much more. I have found that of all the solutions for bracelets I have tried (flashdrive, traditional, wallet card, necklace), this works best. I also have a MyID wallet card in my wallet, and stickers on my phone case and school ID (like I said, overkill is best)
      • I have this one personalized and on the front is has
        “Medical Alert/ Julie LASTNAME/ “see back ICE for info”
      • Back has the access info, QR code, ID and PIN
    • I also have 3 silicone wristbands that give quick information on the same wrist. I do this because those are important for quick access, they draw attention to the other bracelet, and they paint the picture that I have multiple issues and they should definitely look at my EMR
      • “MAST CELL DISEASE/ I CARRY AN EPI PEN”
      • “LONG QT SYNDROME/ SADS AWARENESS”
      • “MEDICAL ALERT/ EHLERS-DANLOS SYNDROME”
    • BUT WAIT THERE’S MORE! At school, I also have a folder taped in plain sight on my dresser next to my bed labelled “EMERGENCY INFO” (useful for EMS, often gets passed to nurses too)
      • In it I have a copy of my
        • MYID info
        • drivers license
        • insurance card
        • any wishes in regards to my care
        • communication instructions (since if EMS are there I often can’t communicate well verbally

6. Mobility devices ≠ giving up ≠ bad

  • I started off using a cane, which I got from a drugstore, standing in line behind an 80 something year old man buying a cane and wanted to qualify my purchase with something like: “its a birthday present for my grandma…?”. It was one of the first times my disability became frequently visible and took a while before I got used to people’s questions, judgements, and my own stigma associated with it. But the cane wasn’t good for me so I moved to forearm smart crutches which people just assumed I had sprained my ankle or something and left me alone. I hobbled on those for about a year before my shoulders gave out. Then I got my rollator which I like too, but is still hard on my body. For me, transitioning to being a part-time wheelchair user was not very hard. It gave me more independence, less pain, got me places faster, and allowed me more options for bad days. It isn’t all magical though, people still judge or make comments, and there are still plenty of times I would rather just be able to walk or not have to worry about accessibility.
  • Most important lesson I learned in that journey was that I needed to do what I needed for my body, lifestyle, and pain levels. I’m not going to lie and say I don’t care what people think or that I’m somehow above it all, but for me the independence and assistance my chair allows me if definitely worth it.

All about my wheels (Nemo)

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So apparently March 1st is International Wheelchair Day, so I’m going to do another post about my wheelchair, wheelchair life, and probably some other stuff, so buckle up (get it…wheelchair seat belts)! Despite wheelchairs being a fairly common thing, I have found that most people outside the disAbility community have very little experience with wheelchairs other than maybe being pushed in the awful clunky hospital wheelchairs that time you were super drunk and broke your foot. What that translates to is a) a lot of interesting/awkward questions I get asked from all kinds of people when I am out in my chair. I, personally, don’t really mind them as I am an open person, but I feel like there are still lots of people who always wonder but never ask. Wheelchairs are amazing pieces of technology that are not “confining” nor “bounding”. They allow independence, freedom, and no one stays in their wheelchair 24/7. 

 

My Wheelchair FAQs and Comments:

Excuse the poor picture
    • What kind of chair do I have? 
      • I have a rigid frame Quickie GT Ultra-lightweight manual wheelchair with a Smart drive MX2 power assist wheel. I have a Comfort Company Acta-Embrace back (removable and foldable), and a Comfort Company Vicare VersaX cushion with a custom cover. I have quick release semi-pneumatic wheels/tires.
      • Most manual wheelchair users get their chairs from either Quickie, TiLite (does titanium chairs), or Colors. Almost all ultra-lightweight manual chairs are custom made to the user’s body, preferences, and medical needs (pressure reducing cushions, seat belts, etc). Most ultra-lightweight chairs are under 25 lbs and the lightest is around 9 (frame only). As a manual chair user, every bit counts in effort of pushing, loading and unloading, and portability.
    • Are there differences in wheelchairs?
Different back but whole chair
      • HUGE differences. First off, I will only be talking about ultra-lightweight manual wheelchairs, which is what most full-time chair users pick between that and electric. For manual chairs, one of the first decisions you have to make is whether you want a rigid or foldable frame. Rigid is durable and smoother ride, but foldable can be easier to get in and out of cars. Users also get measured for cushion dimensions, footplate position, backrest height and depth, backrest angle, “dump” angle (how far down your bum sits), center of gravity (positioning of axel in relation to wheels, important for wheelies), floor to seat height, size of wheels and much more! There are also lots that you get to pick based on personal preference like color of the frame, spoke colors, type of caster (small front wheels), size of caster, wheel type (sport, normal), hand rim type, and more!
    • Can you move your legs?
      • Yes, I personally have full use and sensation of my legs. I can’t remember the exact numbers but a good majority of wheelchair users have some use or sensation of their legs. There are many reasons people use wheelchairs, so if you see a wheelchair user’s feet move or see them walking, don’t assume they are faking it…odds are they aren’t.
    • Why do you use a wheelchair?

    • Several reasons, technically, I am what docs and PTs call a “non-functional ambulator”. All that means is that for me, walking is inefficient, painful, tiring, and often dangerous. Some of the reasons I use my wheelchair are: dislocations and subluxations of hips, knees, ankles, spine due to EDS, chronic fatigue, dizziness, poor coordination, lack of proprioception (being able to tell where your limbs are in space), weak veins and heart/ blood pooling issues, inability to walk long distances, and muscle spasms (to name just a few!).
    • When was your accident?
      • Yeah… I get this a lot. Not everyone who uses a wheelchair has a spinal cord injury and not all of us were in accidents, there are several conditions or reasons a person might use a wheelchair, some congenital and some not.
      • Some common examples (*indicate congenital conditions or potential to be)
        • Spinal cord injury
        • *Spina bifida
        • *Cerebral palsy
        • *Ehlers-Danlos Syndrome
        • Stroke
        • Multiple Sclerosis
        • Chronic Fatigue Syndrome
        • *Epilepsy
        • Amotrophic Lateral Sclerosis (ALS)
        • *Osteogenisis Imperfecta
        • Traumatic Brain Injury
        • Amputation
        • *Spinal Muscular Atrophy and Muscular Dystrophy
        • Dysautonomia
        • Much more! We are as diverse as the rest of the population and no two users are the same!
    • *screaming* HOW ARE YOU TODAY MAAM? 
      • Wheelchair≠ hard of hearing ≠ intellectual disability (even if it did, not the way to go)
    • At least your feet don’t hurt, I’m so tired of standing.
      • I get this one A LOT, especially at events. Yeah, my feet may not be sore but make no mistake, wheeling around is brutal on your shoulders, arms, fingers, and neck. Especially as an EDSer. Thankfully, my Smart drive (link to video demo) allows me to save spoons by automatically matching my current push speed until I tap my bracelet controller or grab my hand rims to break.
    • What is the worst thing about being a wheelchair user?
“Build a ramp they said. Its the law they said.”

      • Tie between grocery shopping, ice, or “accessible” buildings.
      • Grocery shopping is a pain because you cant reach 1-2 of the top shelves from a seated level, you need mad skills to push a cart and wheel (alternating hands and pushing) otherwise have to balance a basket, once you get home you still have to get them inside…
      • Ice sucks on wheels
      • Like of all the architectural feats and amazing designs and still like 80% of buildings have steps to get into them. Smh world.
    • How do you drive? (answered for people who don’t have leg function)
      • Manual hand controls or electric ones
Example of manual controls
      • Manual ones consist of two poles with clamps that go around the gas and brake and you push the gas one for… gas and the brake one for the brake. These can be easily removed and don’t permanently alter the car. This leaves one hand for steering. Many people have some variation on the “suicide knob” which attaches the wheel and makes it easier to turn with one hand
      • Electric controls have to be retrofitted with controls that work for the driver but most have a control setup for brake and gas and then the steering wheel
  • Here let me give you a push? or *grabs your push handles and starts pushing you without asking*
    • NOOOOO! Thank you for caring and being nice, asking is always fine. First off, it takes some skill to properly push a wheelchair on normal terrain, certain sized cracks might send you flying, ramps are hard to control speed on, and people have to be tactfully avoided. Second, NEVER touch, push, or grab a person’s wheelchair without their permission. It is terrifying, rude, and dangerous. I have had it happen many times and end up with dislocated fingers, some bruises, and occasionally damage to my chair.
  • Do you need help? “No, thanks” No really, let me help.
    • Similar to above, but believe it or not, we get along in the world fairly independently most days. Again, always okay to ask but NEVER ASSUME.
I love my wheelchair. It is my freedom, my independence, and my ticket to less pain. It is a piece of equipment, but also an extension of me. Treat it like you would treat me. Happy early international wheelchair day, I hope it is wheelie great! *badumchhh*
when a tree is more important than access

#Wheelchairproblems

       In honor of Bertha’s retirement (my current chair), and the arrival of my new chair (name TBD) I thought I would make a post about some of the pros and cons of being a wheelchair users along with some illustrious stories and bits-o-wisdom.

RIP Bertha Unkown-2016
Bertha fixed with 6 washers and a screw

Thanks are also due to Bertha for she has taken me places that otherwise would have been out of reach, and allowed me to get one step closer to being a normal college student.
A couple of days ago me and the boyfriend attempted to go visit the Air and Space Museum in DC. We drove and parked at the metro and metroed into DC. Someplace in the literal TWO blocks between the station and the museum, the screw that holds one of the small front wheels in disappeared. This means that the pin that goes through the wheel (essentially the axel) was not held in place. #howdoesthisevenhappen  (by the way this was Sunday….when it was snowing in March and cold as shit)  We had to call a Lyft driver, hope that they would have a car big enough to fit my chair, and get a ride to a hardware store a couple miles away (second time this has happened). Upon loading the chair, one of the spacers must have fallen out too. Thankfully the fellas at ACE Hardware in NW were happy to help us out. That being said, by the time this whole ordeal was over, the museum was closed so we headed back to VA. #wheelchairprobs

Pros:

  1. Good parking spots
  2. Nobody looks at your butt…nobody can see your butt
  3. Your shoes stay clean and nice for way longer
  4. You can get places really fast (as long as its downhill/flat)
  5. People all of a sudden become more chivalrous
Cons:
  1. You’re lower than everyone else
  2. You can’t always reach top shelves in stores
  3. Molehills really are mountains
  4. Sometimes even accessible places are stupidly unaccessible
  5. Clothes are not designed for the sitting figure