Care about Rare

February 28th is Rare Disease Day.

Now, if you’re like me you might roll your eyes at this one. In a time with social media, ice-bucket challenges, awareness months for every condition known to man, ribbons, and GoFundMe pages, awareness of something is almost always going on. Let us all admit we are burnt out on breast cancer awareness. Don’t get me wrong, breast cancer sucks but the funding and publicity are not correlated with its prevalence, deadliness, or need for awareness. Additionally, caring burnout is occurring due to politics, wars, tragedies, disasters, and maybe even the loss of your beloved pet rock “Rocky Balboa”. Whatever is going on in your life, I hear you, your frustrations and hurt are valid.

Now let me tell you about why Rare Disease Day is important.

First off, lets get our knowledge on because who knows anything about this stuff, let’s be honest. According to the Global Genes Project:

Orphan drugs are drugs specifically for treating rare diseases.
In 1983, the US passed the Orphan Drug Act which allocates grant
funding to companies researching and developing orphan drugs.


  • in the US, a rare disease is any condition that affects less than 200,000 people (under 50,000 in the UK)
  • 80% of all rare disease patients are affected by approximately 350 diseases
  • 50% of people with rare diseases are children
  • 35% percent of deaths in the first year of life are attributed to rare diseases
  • 30% of children with rare diseases will not live to see their 5th birthday
  • ~50% of rare diseases do not have a specific foundation supporting or researching their rare diseases
  • Only 5% of rare diseases have ANY FDA approved treatment options
Okay, now we have the numbers, so what?
Before I get to the give away your money or talk about it phase, I want to try and tell you what it is like to live in the rare world. It is scary, it is hard, it is time and energy consuming, and often times… seemingly hopeless. This will not be sugarcoated, so skip ahead to the next meme for a jolly good time.
It is going to specialists only to have them say, “that’s just how it is” or “I’m sorry, there is nothing we can do”. It is knowing more about (or even about) your condition than many in the medical fields. It is, unfortunately, getting misdiagnosed, mistreated, or misinformed. It is having your second opinion being google… because there is no one else and you aren’t sure if what the doctor is saying is true or correct or even sane. It is constantly having to be your own advocate, nurse, management team, awareness spokesperson, and cheerleader.  It is weighing being misunderstood or mistreated over getting urgent medical care. It is putting on a smile when all you feel like doing is crying. It is that moment of panic when you have a bad day that you will need help and can’t be all alone. It is being surrounded by people who love and care about you, yet feeling alone. It is making plans with your other rare friend to have a movie marathon but spending the whole time talking about and decompressing about your illness, doctor’s visits, anxieties, and fears. It is carrying a backpack instead of a purse because you need your medications, testing supplies, and toiletries so your mouth doesn’t taste like vomit the rest of your adventure. It is envying people who can say, “oh, I have ____” and not have people say “what?”. It is knowing that if you wound up in the ER and couldn’t communicate and people didn’t have your information… normal treatments could kill you. It is having pre-programmed phrases to spit out to explain your conditions, witty comebacks to counter arrogance, and feeling the need to justify yourself so people understand. It is getting told you could fix your diseases if you prayed harder. Or drank only kale. Or by righting your sins. All from random strangers. Above all, it is isolation and uncertainty.
So what can you do?
  • Spread awareness on social media, not just today…any day
  • Talk about rare diseases
  • Donate to rare disease research
  • Donate to companies working on orphan drugs
  • And last, but certainly not least, know that you are never alone: with our without a rare disease!
Click on picture to learn more or donate!

All about my wheels (Nemo)

p.p1 {margin: 0.0px 0.0px 0.0px 0.0px; font: 12.0px ‘Helvetica Neue’; -webkit-text-stroke: #000000} span.s1 {font-kerning: none}

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

If You Can’t See the Good, Make the Good

             Okay guys, this is not a political blog so this will not be about politics, but I am acknowledging the many whose lives have been torn apart recently due to aforementioned politics. I feel you, don’t give up. These past couple months have been very challenging for me and friends due to health, losses, and overall “bad stuff”. Despite it all, we find ways to carry on. We find new ways of being okay, we accept the pain and the hurt and we find new reasons to live. Sometimes it just has to be enough that in this very moment you agree to hold on through the next. It is okay to not be okay. Sometimes it is enough to hold on to the belief that life in and of itself is valuable, even when you can’t formulate a reason for things. And if your me, sometimes you hold on to a lesson in a book or movie, holding on to the belief it is true.
         The title of this blog comes from an amazing young boy who, unfortunately, lost his 10 year battle with a rare disease. Anyone who knew him knew that despite 80+ surgeries, near constant hospitalizations, daily pain, and 2 failed marrow transplants, he loved his life. He dedicated his life to others and never complained. One of his catchphrases was, “if you can’t see the good, make the good”. I am so very thankful to have had the pleasure of knowing him, even if it was ever so brief. Irrational as it is, one of the hardest things about losing him was dealing with the feelings of why him and not me. I feel like he had so much more to offer the world, though I know he is home now. I will do my best to spread love and light the way you taught me, you are missed. Thank you to all my friends and family who have supported me through this time.

“‘Yes, thats’ so,’ said Sam. ‘And we shouldn’t be here at all, if we’d known more about it before we started. But I supposed it’s often that way. The brave things in the old tales and songs, Mr. Frodo: adventures, as I used to call them. I used to think that they were things the wonderful folk of the stories wen and looked for, because they wanted them, because they were exciting and life was a bit dull, a kind of sport, as you might say. But that’s not the way of it with the tales that really mattered, or the ones that stay in mind. Folk seem to have been just landed in them, usually — their paths were laid that way, as you put it. But I expect they had lots of chances, like us, of turning back, only they didn’t. And if they had, we shouldn’t know, because they’d have been forgotten. We hear about those as just went on — and not all to a good end, mind you; at least not to what folk inside a story and not outside it call a good end. You know, coming home, and finding things all right, though not quite the same — like old Mr. Bilbo. But those aren’t always the best tales to hear, though they may be the best tales to get landed in! I wonder what sort of a tale we’ve fallen into?'”
-J.R.R. Tolkien
 And that, my friends, is why Samwise Gamgee will always be the best. That and…

And that’s all I have to say about that…