What Can I Do To Help?

Dear Super Awesome Friend,

        Loving someone is hard, loving someone with chronic pain and chronic illnesses can add some uncharted territory. This is my attempt to help some friends out who have been struggling with the answer "I don't know" to the amazingly beautiful question of, "what can I do to help?"        
         First, know that while unsatisfying for your drive to be useful, fix the world, and get home in time for dinner, your presence and attention mean more than you might ever realize. Illness is lonely, isolating, and unpredictable. Waking up after a night of pain and other fun NSFW wonders to random memes, emojis, or stories can make a shift from bad day mode to good day mode (ze mind is a powerful thing you know). Obligated to text me every day and respond to everything I text you? Nope, Chuck Testa! While I hate saying no and canceling plans, I would almost always rather be invited (unless it's a chocolate festival in which case all self control will be throw to waste and the gastroparesis gods will reign down their mighty wrath). While each of you can probably call to memory many times where I have no taken care of myself or made bad choices, for the most part I know my limitations all too well.
       Here are some FAQ on this topic:
What are some things that are easy for you to do?

1. All the time: laugh, watch netflix, talk about what I watch on netflix, watching disney movies, fix things, cards or board games, singing disney songs in rediculous voices
2. Most of the time: all of the above, car rides, rolls near water (parks, creeks etc), going to movies, swimming, vidja games
3. I HAVE SO MANY SPOONS AND GOT MORE THAN 3 HOURS OF SLEEP: rock climbing, nature, camping, amusement parks, museums,  and frisbee

What are some things that you don't like doing?

1. Going to loud, busy or bright places or flashing lights
2. Meeting multiple new people at once 
3. Anything that requires long periods of focus (ie watching a pot boil, watching a fast paced subtitles movie)
4. Games I can't win at (just kidding...kind of)
5. Going out with multiple stops (chair loading and unloading is tiring yo)

When is it best to give you space?

1. When I'm being a brat for no reason (fight me...I dare you)
2. When I've been in a spoon drought (see above)

You haven't texted me back, did I do something wrong? Do you hate me?

Probably, most of you are terrible people. But actually no, usually it is one of the following:

1. I'm low on spoons
2. I'm having vision problems
3. I read it, swore to the unicorns I responded but actually didn't, and found it three weeks later...
4. I can't form coherent sentences in English
5. I physically don't have my phone

I feel like a bad friend for not knowing how to help/what to do/what to say....

The fact you feel that way actually means you are a good friend and just not a psychic or a unicorn... we all can't be awesome ya know. But actually this one is a tough one because so far none of the answers I have given people have been reviewed as 5 star customer service. I guess all I can say is that I hear you and I understand and view nothing more or less of you measly humans. 

Am I supposed to laugh at your twisted jokes about death and illness or is that in bad taste?

You can laugh if you want.

I'm scared but I don't want you to know or worry about me because apparently there is some precedent for supposedly being able to tolerate scary diseases and pain and suffering of a close friend and I have to hold myself to that standard.... oh or I could accidentally kill you...

It is okay to be scared, I'm scared too. Give yourself time. 

I hope this helped someone but if not at least I got a few more memes into play. 

Love you fools,

Julie

But You Are So Young...

          But you are so young... words that pierce a hole right through my sternum. Yes, I am young but unfortunately chronic illnesses don't ask for ID. Yes, I am young but I know kids, young adults, adults, and seniors with chronic illnesses. Nobody tells a diabetic kid they can't be sick because they're too young! Yet we (spoonies of various illnesses) get it all the time. My passport and birth certificate concur that I am 21. I am young but anyone who has heard the snaps and cracks of putting my joints back in place before I get out of bed each morning would swear that I am 80. I am young but take more medication and supplements than my grandparents. I am young but I wake up each morning to face a monster that knows my name, my fears, and my limits. I am young but my calendar is that of a retiree: volunteering with doctors appointments and physical therapy to fill in the gaps. I am young but I have friends my age and younger fighting for their lives and few that lost their battle already. I may not look sick, or I may, but I feel sick. I feel these disease nestle into every nook and cranny of my body. I put on a smile to mask the pain and refuse to slow down for the fear that I will be eaten whole by the flames. As Plato said, "be kind, everyone you know is fighting a hard battle". While many of these comments aren't said with ill intent, they can be destructive to someone not quite back up on their feet. I suggest going with a complement not related to pain, illness, or weight for the general population. My heart broke the other day when a fellow friend with gastroparesis (stomach paralysis) told me (after losing a lot of weight do to sickness and malnourishment) her mom had told her she looks better "lighter" after she had just been talking to her mom about how she's really struggling with her GP. Pro-tip: Try crawling around in our bodies in your mind. If you were in constant pain and feeling defeated, would you want someone to tell you "you don't look sick!"? Even if with good intentions the answer would probably be no. You can always ask instead how we are doing or if we have seen any good movies recently (chances are if it is a spoonie the answer is YES...we watch a lot of Netflix... ;) ).

Harper Lee

May is EDS Awareness Month

Alright, it would be silly if I didn't post something EDS Awareness related because it is awareness month so here goes.
Here are some FAQ about Ehlers-Danlos Syndrome

• What is Ehlers-Danlos Syndrome (EDS)?
• EDS is a group of genetic connective tissue disorders (CTD) that affect your bodies ability to produce collagen. Collagen is a protein in connective tissues that acts as a glue for your body. People with EDS produce weak, faulty collagen which affects our joints, organs, blood vessels, ligaments, tendons, you get the jist. There are different subtypes based on which type of collagen the mutation is on. All types share joint laxity, easy bruising, and soft skin. There are currently six different types of EDS (newly revised): Classical, Hypermobility, Vascular, Kyphoscoliosis, Arthrochalasia, Dermatosparaxis, and Other. It is possible to have crossover, AKA more than one type (lucky duck...).
• How is EDS diagnosed?
• Excellent question self, EDS is a clinical diagnosis that can be confirmed with genetic testing in all but the hypermobility type. The clinical diagnosis comes in two components: the Beighton Score (asses joint hypermobility), and the newer Brighton score. (I know, it's stupidly similar names)

BRIGHTON CRITERIA

BEIGHTON SCORE (out of 9)

• Is there a cure?
• Major womp here. Not yet. But, in Baltimore they started the first EVER EDS Clinic and Research Center out of GBMC!
• What are some conditions that are comorbid (related to and commonly occur together) with EDS ?

• Dysautonomia (POTS, NCS, NMH, MSA, AD, PAF....google them, I dare you!)
• Mast Cell Activation Syndrome and Systemic Mastocytosis
• Gastroparesis and GERD
• Chiari Malformation
• Fibromyalgia
• Chronic Fatigue Syndrome
• Craniocervical Instability
• Anxiety
• Depression
• Mood Disorders
• Autism
• Mitochondrial Disease
• Multiple Sclerosis
• Lupus
• Lyme Disease
• Raynaud's Phenomenon
• Insomnia, Sleep Apnea, and Narcolepsy Oh My!
• Tethered Cord Syndrome
• Costochondritis
• Vocal Cord Dysfunction 
• Much more!
• What was the point of that?
• Because collagen is everywhere in your body, EDS effects everything. 
• What's with the zebra?

• The zebra is the mascot for rare diseases based off an old medical saying from the 1940's Dr. Theodore Woodward, "when you hear hoofbeats, think horses not zebras". This saying is used to remind medical students that it is often not a rare diagnosis. The problem is that medical zebras do exist, and it can be hard to remember that at times. The average time from start of symptoms to correct EDS diagnosis is 8-15 years. 

Some Facts About EDS!

1. 50% of EDSers can touch their tongue to their nose! 
2. EDS is currently estimated to effect 1 in every 5000 births world wide.
3. It is likely that most contortionist have EDS or another connective tissue disorder.
4. Professor Rodney Grahame, a British Rheumatologist in the field, says, "no other disease in the history of modern medicine, has been neglected in such as way as Ehlers-Danlos Syndrome.
5. Characteristics of EDS were first described in 400 BC by Hippocrates, but the syndrome was named after Edvard Ehlers of Denmark in 1901 and Henri-Alexandre Danlos of France in 1908. 
6. EDS is considered an invisible illness, even though it can have visible manifestations (extreme bruising, atrophic scarring, joint hypermobility, etc).
7. Due to the lack of resources, research, and awareness there is no cure, few treatment options and is largely based on palliative care.
8. Actress Cherylee Houston has Ehlers-Danlos Syndrome.
9. Some breeds of cats, dogs, and horses can have EDS.
10. Gary "Stretch" Turner, the man with the world's stretchiest skin has EDS. (likely did many contortionists and circus performers)

Congrats! That's all for today folks, feel free to comment if you have any questions, I'll do my best to answer them!

Jkjk...I hope :)

"Falling Behind"

I'm a junior in college.
Actually, well, I should be a junior in college.
I'm actually a sophomore in college by credits, junior by age and semesters.
But I'm catching up!
          No, actually I'm not. Still chugging away at what feels like a cruise controlled speed. Chugging away at the arbitrary set number of hours you must sit in school until deemed "educated". And I'm readily becoming more and more frustrated trying to arrange class schedules, accumulate credits in any way possible, and get a good enough grade so that I can move on. GMU has this nifty program called Degree Works that takes your credits and tells you what you still need to graduate, which classes fill that requirement, which classes have qualifiers, ya get the drift. According to Degree Works, after almost 9 semesters now, I am officially half way.
          College is not friendly towards students with chronic illnesses. Despite many universities attempts to bridge the gap with programs like disability services, the odds are still stacked against you. Many classes will drop you if you have too many absences (sometimes even 1), regardless of your ability to keep up with the work. College is also a breeding ground for germs, poor eating and sleep habits, and stress. Being physically able to get out of bed is one thing, going to class another, and then absorbing it? How about homework? Most homework either involves reading, computer use, studying, or essay writing. Most of those tasks are near impossible when eye strain, fatigue, migraines, photo sensitivity, concentration issues, and other fun cognitive issues plague your daily life. Reading that may take most people 30 minutes takes an hour for me. While most college students become sleep deprived zombies around finals too, finals for students with chronic illness can be especially challenging. Most people get sick during finals but because the pressure is on, non-chronically ill students are more likely to go to class, despite being sick and often times, contagious. This puts those of us with weaker immune systems at risk for getting very sick during finals when we are already probably pushing our limits.
           All of this and more makes me look at that half way mark and want to cry, but not tears of joy. Finishing college seems impossible (all my family out there chill, I know its not impossible and I'm not dropping out). It makes me sad because before I got sick I was so excited about college. About life beyond school. About making a difference. Now I feel like that motivation and joy of education is being slowly stripped from me. I don't want it to be this way. I want college to matter, to be something I enjoy rather than just another constant struggle. I'm scared this fog in my brain will never clear. I'm okay with "falling behind" but I'm not okay with staying behind.

#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

The EDS Bible

Finally it's back in stock! This book is really the EDS Bible. It is written by Dr. Brad Tinkle who is largely considered one of the fathers of EDS and is very well respected in the EDS community.

http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1458184415&sr=8-1&keywords=joint+hypermobility+handbook

           I have been waiting for months for the book to come back in stock (no idea why) and it is finally here! I did my first breeze through it and it looks amazing. It not only details EDS, the many conditions that are comorbid (come along with), and research but also treatment plans, PT options, medication and supplement suggestions and much more! Highly recommend for EDSers and caregivers as well as medical persons who want to learn more about EDS. I will post again later once I have read more.

On Memories of Easier Days

     I was looking through pictures on my computer desperately searching for this one picture I needed for a project. After a couple of minutes I found the picture and immediately quit the application, hoping I had escaped in time. A sharp pain starts in my chest. I remember climbing mountains, and going on adventures. I remember not having to plan my life around medications, doctors, and energy fluctuations. Spontaneity. Freedom.  Carefree. Worry-free solitude. I have always been some degree of sick, in some degree of pain, and had some restrictions, but nothing compared to this. I live with constant anxiety about flare-ups, falls, canceling plans, and being alone when needing help. It's exhausting. My 21st birthday is rapidly approaching and planning the celebration has been yet another reminder of limitations. Sure, you can break those limitations: eat whatever you want, do something physically demanding, or go to a new place where you are unsure of what you might encounter but theres a catch. Breaking rules and limitations with my body can sometimes leave me dealing with the aftermath for days or weeks following. It can mean anything waking up in the ER with no memory of what happened to simply being unable to get out of bed for days. So, is it worth it?
        For many people a 21st birthday includes hanging out with friends and family, and having their first (legal) alcoholic drinks. Alcohol is definitely out of the question because of the potential for serious medication interactions (RIP Julie). In my family, tradition is to have a family dinner at the restaurant of your choosing and then desert and presents afterwards at home. For me currently, eating causes pain, nausea, vomiting, and other TMI GI issues. I could go out and eat something I've missed and spend days 2-6 of year 21 dealing with the repercussions, or I could plan something not food, alcohol, or high energy centered. Some 21st eh?

I miss not having to worry about spoons, building accessibility, supervision, and germs. Those were easier days.