The Maiden Voyage

Last week the stake president met with my parents and myself.  Knowing how badly I desired to be a proselytizing missionary, he has been working without rest to help me reach that dream while still avoiding doing anything that would give me pain with the EDS.

It’s been a miracle.  I thought I would have to stay at home and occasionally go with the missionaries to teach, but this is an almost complete fulfilment of the dream I’ve held for as long as I can remember.  We’ll be going transfer by transfer (which are six weeks), testing how well I do.  I’ll have a wheelchair, but mostly I’ll be doing what my companions do.  I get to teach, proselytize, and work with the sisters to bring others to Christ.  If it becomes too much, I get to go home for a transfer then go right back out again.  We’re shooting for six months, but I’ll try to go the full eighteen.

There have been so many angels in this process.  Angel #1 is President Williams, who hasn’t stopped fighting for me.  President Sweeney, Bishop Kai, my parents … it’s been amazing beyond words.  And as I went to be set apart as a missionary of the Church of Jesus Christ of Latter-Day Saints I saw a couple I’ve known for a while sitting in the foyer.  They have been my “adopted parents” when my own weren’t able to come to Gospel Doctrine class, sandwiching me between them and smiling, laughing and learning with me.  Their appointment was before mine, then as the bishop came to fetch us, he gave my mom a big hug and whispered something in her ear, seeming very moved.  The couple were in the room and the bishop and the husband set me apart.  They were so excited and the lady kept hugging me.  My mom later told me that they offered to pay for the entirety of my mission.  I’m telling you: angels.  Those God has sent into my path to help me fulfil this dream and bring others unto Him.

Unfortunately my father wasn’t able to be there (we’re trying to sell the house so we can move down to the city and join him) so we Skyped with him — he was dubbed the “electronic father” and “digital dad.”  (My older sisters weren’t there, either — they don’t even live in my state and it’s really hard).  When President Williams presented the idea that would allow me to go like this, my father started crying, he was so touched and happy.  The Gospel means most to us.  The Lord is everything.  And everyone knows how much I want to go and serve Him.  Even my best friend, who isn’t a member of the Church and so hasn’t grown up with the understanding of LDS missions, is such a support.  It’s really hurting her, but she loves the Lord as much as I do and understands why I need to go.  For us, He comes first.

I need to talk a little more about President Williams.  Last Sunday when he called us in and told us what we could do and I immediately agreed, he then resolved to do everything he could to contact the mission president and have him come for another interview after church.  Together they’re sending me off, working so hard to help me do this.  I feel like Heavenly Father has just opened the floodgates to the blessings.  I know it’s all pretty sudden, but I was given the option of going during this transfer or waiting until the next.  I don’t wait, so it wasn’t even an option for me to hesitate.

I have the most amazing group of friends anyone could ever ask for.  I’m going to miss them like crazy, but they love the Lord as much as I do and their love and support means so much to me.  I’m excited to see how they grow as writers and as people while I’m gone, and I really hope Mirriam takes care of my baby Odd-Eyes.  And Ice.  If anything happens to him, Mirri, I might have to kill you.  And Apollo had better wait for me — I’ll be his missionary then I will come back and love him forever and make pretty half-Korean quarter-Bolivian babies that he can chase after.

My family is the greatest blessing in my life after God.  Despite our rather teasing, emotionless way of showing affection, I know they’re going to miss me and they’re the ones that, at night, I’ll be yearning for.  Every day is an adventure with them, and I can’t wait to come home and continue that.  And my baby sister is waiting for her call — so we’ll have two missionaries out!  Kerri, if you go to Africa, I will laugh so hard I’ll need to be hospitalized.

My ward family swarmed around me today, showering me with hope and love.  Guys, I’ll miss you and look forward to seeing you again.  Brother Stepp asked me to sing (okay, he told me a couple weeks ago exactly what I was singing so I didn’t have a choice) and the bishop allowed me to sing I Know That My Redeemer Lives today, even if nothing had been planned in advance.  Brother Vest, who is a WWII veteran and in his 90s told my mother that he had never heard the song so heartfelt before.  I have a very difficult time singing in church because I get so wrapped up in the physical — is my diaphragm in place, is my throat open, oh, no, I missed that note — and the attention that it’s been known to become a performance rather than a song of worship.  But my dear friend Shelby gave me a tip: pray that the congregation and yourself will feel the Spirit as God wants them to.  It worked.  I felt every word and I hope was able to bring something good to the meeting.  Something I felt inspired to do was change many of the ‘I’s and ‘me’s to ‘ours’ and ‘we’s.  I pray I helped someone through the music and my voice.  (Thank you, Mama, for the vocal genes).

There’s so much more I could go into — but I’ll leave it at that.  I may be home at intervals, but let’s hope I’m not back for a year and a half.  I want to serve for as long as I can and with my full capacity, even if that capacity is less than others with healthy bodies.  I have God on my side and whatever gets thrown at me, that’s why I’m out there.  I’m out there for Him and to bring joy to those around me.

Love you guys!

Cheers,

Sister Ana Pinto-Haynes

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The Last Day of May

As everyone has been continuously reminded, May is Ehlers-Danlos Syndrome Awareness Month.  And today is the 31st.

This is gonna make me cry.

Please share the word.  There are many of us that are suffering.  We need others to know about this — employers, parents, everyone.  There are so many different ways Ehlers-Danlos Syndrome affects us individually, but almost as many when it comes to families and communities.

Keep us in your prayers and thoughts, please.  Yes, this makes us stronger, but a cure would be really nice.  And tell all your doctor friends about it, please.  If someone comes to them, it would be wonderful if they had the capacity to correctly diagnose EDS.

And I am super tired, so I’m going to bed.  Sleep, here I come!

Cheers!

Ana

Liebster Award Tag

I love that name.  I have no idea what it means, but the German-ness of it is just so fun.

Anyway, I considered myself tagged by my dear friend Tracey.  She’s an awesome person, amazing writer, and hilarious friend.  Read her list: http://traceydyck.blogspot.com/2015/05/liebster-award.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+TraceyDyck+%28Tracey+Dyck%29

(I have no idea how to make the fancy ‘click here’ signs, so please bear with me.  I looked it up and was even more confused than before).

Anyway, on to the questions!

1. What’s one of your favorite summer reads?

Oh, dear me.  I don’t really reread books, so this is a hard one.  There are very few things I actually revisit cover to cover, and it’s only when I feel a strong need to enter back into those worlds.  Those picks are a) the Squire’s Tales, b) an unfinished book by my friend, c) Harry Potter, and probably d) the Phantom of the Opera.  And right now I’m reading Najee: A Glimmer of Hope by Sarah Y. Westmoreland, and Shakespeare is good for any season.

The Squire, His Knight, and His Lady (The Squire's Tales) by Gerald Morris. $6.99

(Based on the legend of Sir Gawain and the Green Knight).

2. What’s your favorite way to cool off on a hot summer day?

My sisters and I developed a game we would play in our rather suburban neighborhood: fill a huge bucket with water, arm everyone with a plastic cup, and chase each other with the full glasses.  Hit your victim with the water, they’re frozen until someone else frees them.  You get soaked, but it’s so much fun.  And apparently wet long hair is not a good alternative to the water glass — I’m told it hurts.

3. What’s a combination of three authors’ “special somethings” that you’d like to emulate in your own writing?

Ooh, rough one, Tracey.  Great question, though!  Hmm.  First of all, Gerald Morris’ (the Squire’s Tales) humor.  His books are laugh-out-loud hilarious and the man’s wit is rapier-sharp.  I love Eloise Jarvis McGraw’s perfect balance between showing and telling, making you feel as if you are in the book.  And probably my favorite detail included in the books I love most is the realism of the characters.  If they’re flesh-and-blood, I have to love them.  They become my friends.  One of the best at this is Mirriam Neal, but Eloise Jarvis McGraw and Gaston Leroux are also some of my favorites in this area.

4. What music are you currently listening to?

Right now?  Or just in this general time frame?  Right now I’m listening to my sisters putting together a puzzle, and they’re not music.  They’re strange creatures.  Generally, right now I listen to the GazettE, but I do that a lot.  I’m also doing a project involving musical theatre, so I’m listening to more Chess and Aida (Elton John’s, not Verdi’s, obviously).

5. Which superhero (from either Marvel or DC) are you most like?

Tracey, are you trying to kill me?  No idea.  I want to be Spider-Man (not Spider-Girl, I will be Spider-Man), but as to whom I’m already the most like?  (And I really hope that was the proper use of ‘whom’ — Mom’s helping with the puzzle, and I’m too lazy to utilize her English-teacher skills).  I’d like to say I’m most like Captain America, since he’s one of my top favorite people ever, but probably Bruce Banner/the Hulk with maybe a bit of Natasha Romanoff/the Black Widow thrown in.  I try to be calm and kind, but my temper is something I struggle daily with.  And like Nat, I haven’t always been a perfect princess, but I still try to do my best.

6. What’s your favorite fantasy creature you’ve ever read about?

Chimera, hands-down.  Have you ever read the Treekeepers?  I’d always liked chimeras, but Ally completely solidified that.  I also love griffins, and dragons are cool, too.  Although my love of chimeras kind of got me into trouble — there was a girl when we just moved here that I was trying to be nice to whose name, while spelled differently, was Chimera.  I said, “Oh, that’s awesome!  They’re my favorite animal!”  My sisters told me later that my ‘compliment’ may not’ve been that welcome, seeing as we live in a deprived community where a chimera is a type of car.  I love where I live, but I can’t imagine a world without chimeras — it would seem so lonely, bleak, and sad.

Adorable baby chimera yawns its way into your heart

(It’s a baby chimera!)

7. Chocolate or vanilla?

Chocolate.

my thoughts exactly.

8. What’s something you admire about yourself?

I don’t give up.  I come from conquering stock (William the Conqueror and Charlemagne on Mom’s side, Theodore Turley and the pioneers on Dad’s, just to name a few), and I shall make my ancestors proud.  There are times, of course, when I want to give up, but how could I live with myself if I did?  My life would come to a grinding halt, and I refuse to give in to those things that would like to stop me.

9. Which do you prefer: writing by hand or typing?

Because of the Ehlers-Danlos Syndrome, I struggle with writing by hand.  Besides, I swear it was a form of torture my mother devised for us as children.  Because of my loose joints, my handwriting is really bad, and if I write for too long my wrists tries to attack me.  Which is why I can’t study math right now….

10. If failing was impossible, what would you do?

Everything!  I would be a heart surgeon, a pharmacist, live in college and speak fifty languages, I would take a walk every single day, I would fly, I’d become a mermaid, I’d become Spider-Man, I would be good enough to sing at the ROH (Royal Opera House), and most importantly, I would rid myself of all the mistakes I make once and for all.  I’ve mentioned that I have a real fear of failure, and something that kills me is my past.  I feel like I make so many mistakes and have so many flaws and can never make my Heavenly Father proud, but if failure was eliminated, those thoughts wouldn’t trouble me.  But honestly, failure is part of the eternal plan.  If there was no fear of failure, there would be no triumph when we succeeded.

The Amazing Spider-Man | 24 Unofficial Movie Posters That Are Better Than The Real Posters

11. What’s something God has taught you recently, new or rediscovered?

Best question yet, Tracey.  He’s teaching me about the Atonement again.  That no matter how many mistakes I make, I can be forgiven.  And He’s teaching me that He’s always there.  I can always rely on Him, even if it’s a small matter.  He wants to help me.  My biological father always told me how disappointed God was with me, so it means so much that I’m learning from God Himself that it’s not true.  I can become better, and I do have worth in His eyes.

Tagging time!

All right, I still am very limited in who I know in the blogosphere, so please, consider yourself tagged and give me the link in the comments!

But I do have to tag those I actually know: Shelby, Lody, and my new EDS friend Mandiix.  And Rana, I’m not sure what the rules are concerning tags, so you’re included.

And the questions:

1. Which Disney character do you identify most with?

2. What’s your ethnic background?

3. If you had your pick of the best cosplay materials in the world but could only choose one character to play, who would it be?

4. What do you think the greatest blessing in your life is?

5. What is your favorite physical attribute in yourself, and what is your favorite spiritual attribute in yourself?

6. If you forgot everyone in your life and your relation to them except for one person, who would that person be?

7. What’s your dream? (It doesn’t have to be something achievable.  Just something you dream of doing, every impossibility thrown out the window).

8. What are your favorite qualities in a friend?

9. What do you like to study? (It could be anything from Impressionist painting to the cultural impact of fleas).

10. What is your favorite word?

11. List all the reasons you’re amazing.

Cheers!

Ana

You Snooze, You Lose

I know what you're thinking: you've exhausted all the cute things in your life. WELL YOU ARE WRONG. My chronic fatigue is getting worse.  I know it’s not only part of the Ehlers-Danlos Syndrome, but part of the idiopathic edema I have as well.

I had what most people would consider near a full night’s sleep, yet I just work up from a nap.  I couldn’t stay awake.

It’s so frustrating, guys.  One of the reasons I’m doing this post is to spread awareness.  People get frustrated with me for always sleeping, telling me I should have more sleep, less sleep, normal bedtimes, should just get up, should just do it, should run around the block … and the list goes on and on.

I try.  Y’know?  I try so hard.  But nothing works.

I can’t help it.  I do the best I can.  I set my alarm really loud so I get up.  I try to interact instead of sleep.  But I’m always tired.  I could fall asleep anywhere, that’s how exhausted I always am.  I’ve crashed on the kitchen chairs.  I’ve slept curled up in my small window seat in my room.  I sleep upside-down in my bed, desperate not to sink into sleep too deep, but no longer able to fight off the ache for rest.

Sorry, my blankets have accepted me as one of their own and if I leave now I might lose their trust.

(I find this adorable and hilarious).

Please, guys.  If you know someone struggling with chronic fatigue, please be understanding.  We need a cure, but until then, it’s really hard to live our lives without the support of those around us.  And please pray that we have the strength to carry on.

Cheers!

Ana

Happy Ehlers-Danlos Syndrome Awareness Month!

* I have stripes, your argument is invalid! I really should’ve posted this on the 1st, but let’s pretend I was super busy and had absolutely no time.

So, as you’ve probably gathered, May is awareness month for EDS.  Which is very exciting.  Last year I didn’t know I had it, but made a special profile picture on facebook just for the occasion in support of my best friend who suffers from the condition.  (Her second novel, Najee: Awakening is out!  Go buy it!)

It was after that that my ‘Hypermobility Syndrome’ began to act up again, and it was through Sarah that I understood that it’s just the same thing as Ehlers-Danlos type 3.  I’m so blessed that my closest friend is a wealth of knowledge on the subject, having lived with the symptoms almost her entire life.  (We somehow always wind up getting the same afflictions at the same time — from flares to colds to eye stys, go figure — and so she finds pleasure in blaming me for the EDS seeing as I was born first).

Ehlers–Danlos syndrome (EDS) is an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes.

I really dislike complaining, but the EDS has been really bad lately.  As you all know, we’re trying to sell the house, and when we have a showing, the place turns into a madhouse as everyone frantically scrambles to make everything look presentable and sellable.  And I swear, every time we have a showing the EDS gets worse.  I’ll just be starting to heal from that when we have another showing.  And EDS is famous for its unpredictability — logistically, I could be fine next week.  (It probably won’t happen, but one never knows with EDS).  But it’s been misbehaving something fierce.  The pain is everywhere, and there are times that come alarmingly often when my back will hurt so badly that I can’t breathe.  I count down the hours until I can take more medicine.  Typing, sitting, lying down, walking, breathing … it all has the potential to hurt me.  And dang, it often does.

It scares me.  When I was fifteen it all began, primarily in my wrists.  I was diagnosed with Hypermobility Syndrome, but it wasn’t until this past year that the disease made a full comeback.  The pain was all but gone … until it slowly began creeping up on me again.  My back was hit first.  Then my knees.  My shoulders.  I was working quite a lot at Subway, I loved my job despite how tired it made me.  Suddenly I couldn’t do it anymore.  The pain was getting so intense, and I knew that if I continued it would get to a point where I couldn’t work at all.

Changes | Community Post: 31 Random Facts About Ehlers-Danlos Syndrome  We never know when or where we will be in sudden excruciating pain.

This was last December.  It’s gone through phases, as EDS is wont to do, but the past two/three weeks it’s been like a leering face in the window of my future, mocking me and hurting me.

I came to the conclusion that I might have to get a wheelchair — I told my parents and now it’s happening.  I won’t usually need it at home, but it’ll be so nice to go through Wal-Mart again.  Explore the world.  Maybe even go on a proselytizing mission instead of a Church Service one.

Motorized Wheelchair

We went to go see the Avengers yesterday, and as I watched the film, it made me sad that I could never even attempt to do all the stunts they do.  I grew up a dancer, and now I can’t even clean my room without paying a price.

I honestly didn’t mean for this to be a depressing page on this condition.  I meant for it to be a message of hope.  That’s what having a month dedicated to it is all about.  The more awareness there is, the more chance there is of someone finding a cure.  Or even simply that others will understand.  And y’know, we need that.  Us ‘zebra warriors’ need the support of the common people.  We don’t want to be looked down on for taking a handicapped parking space (yeah, my mother’s getting a sticker for the car despite all my arguments).  I’m young, but yes, I need that motorized cart at the store.  When I ask to sit down or if you can open my water bottle for me, it’s not because I want attention — it’s because I’m in pain and I don’t want any more.  And I have hope that together we can fix this.  That if we all come together and support one another, no matter what problems we face, mental, physical, or anything else, we will be made stronger, happier, and fuller.

Cheers!

Ana

Who Says Humanity is Fading?

This could be the piece of information a loved one is desperately looking for. Spread the word. Support the fight. #RiotAgainstI have a condition called Ehlers-Danlos Syndrome.  It’s a collagen-deficiency disorder that causes great pain — trust me on this.  It’s so rare that even out of the percentage of people with it, only a few of us lucky ones are bothered this much by it.  What I know can only be divine intervention, my best friend, Sarah Y. Westmoreland, has the same condition.  It’s because of her that I know as much about it as I do.  Normally the pain sets in in the late teens/early twenties, but Sarah was in a wheelchair by the time she was eight.  I don’t know whether or not you believe in miracles, but being a degenerative disease, it does not get better.  But through a kind, wonderful physical therapist, Sarah has been on her feet for nearly a decade.  This is a miracle.  True, we often were glued to the couch in exhaustion and pain with our little teacups as April went around and asked us what was wrong and we responded, basically, that we felt old.

EXACTLY!

(Part of EDS is that it’s very hard to get up in the morning).

It hurts, guys.  I’m in a flare right now and can barely type.  My back feels like I have knives shoved into it, my elbows feel like someone’s trying to rip them from their sockets.  I got stuck in the middle of the kitchen because my ankle was in so much throbbing pain I couldn’t put weight on it, but my mom can’t even help me into a seat because when she touches me, it hurts somewhere else.  Mind you, this is a flare and it will go away after a time.  It could be a week.  It could be a year.

EDS

I work at Subway and I love it.  But a few weeks before I left on vacation, so circa early December, the pain began to set in.  I had felt it coming on almost ever since I started work, but I’m the kind of person that when I’m on duty, good luck getting me to slow down.

.

(Most accurate thing I have ever read).

Right before I left on my vacation, I asked to talk to the general manager.  I explained about the pain, EDS, and that I really didn’t want to quit but felt that I might have to.  Liz, Kayleen, and Marlena told me to go rest up for my two weeks, then when I came back we would figure something out.

So I go to work two/three days after I return.  I have my cute little Subway outfit on, my tiara behind my visor, and my Mrs. Handel sweatshirt over my arm.  Marlena runs up to the edge of the counter and welcomes me back, then proceeds to inform me that Liz and Phil (the owner) had made a new job entirely for me.  I’m basically to be the face of Subway, greeting people that come in, chatting, and cleaning the lobby as best I can while making our customers feel happy and welcome.

Who does stuff like that?  Who creates an entirely new position for one worker, especially when that worker has a disease that is almost completely invisible and that even the doctors don’t know about?  I work three days a week tops, and at most for an hour and a half.  I usually make it around an hour, but I’m hoping that as I take it easy I’ll be up to full capacity eventually.

They let me come to work covered in braces, and I’ve been all but forcibly kicked from the premises when I start showing signs of pain.


Okay, so that was a while ago.  I have come back from my hiatus.  See, the pain was so bad I had to go in spurts, and now it’s better, thank goodness.  Not gone, it still hurts, but I can actually type now.  And then I forgot.  So, back to business:


The kindness shown not only by my bosses and coworkers has amazed me, especially as I’ve been working for quite a bit now and am very valuable to the store.  It has to be hard on them to lose a good worker, as I’ve seen happen way too many times.  They actually just had to let me go, seeing as they aren’t getting a whole lot of business right now and I’m kind of useless.  But they were amazing about it.  Marlena, my store boss, had me help fill out the quit-paper, we had a nice chat, then when I got up to get a sandwich and leave, she gave me a hug and told me to keep coming back.  Marlena is kind of a hard-edged person, so when she gives you a hug, it means a lot.  Everyone I’ve worked with is the same way.  Even if I had to be let go at a time when all their most valuable hands are either leaving or getting kicked out, they still have had it in their hearts to make sure I felt loved and appreciated, when really, there wasn’t anything I could do that was capable of earning appreciation.  I’m definitely popping back in and getting a six-inch chicken teriyaki.  And begging a handful of jalepenos from Mikey.

Show Low Subway Earns Statewide “Store of the Month” Honor

(I’m second to the right — don’t ask what I was doing.  I look scared.  Left to right: Ralph, Phil and Kayleen, Amber, Chris, Liz, Mikey, yours truly, and Rhiannon.  This was ages ago, so not all of us are there anymore.  Oh, yeah, and Liz again.  We won the statewide Subway of the Month Award!)

Then there are perfect strangers.  We were in the city — a three-hour trip away, ugh — and lining up to get tickets for Imitation Game.  I could literally barely walk.  I had to take baby steps, lean against the pillars on the way to the ticket window, and was trying very hard not to be crabby.  Walking like you’re 100 years old when you’re still a young woman is embarrassing on many levels.  Especially when in a big city where you’re supposed to be having fun.  This older woman sitting on a bench — she was probably in her seventies — was watching me struggle, then called, “Honey, are you all right?”  I smiled and responded that I was, but that simple act of kindness, accompanied by the knowledge that my condition wasn’t troubling anyone (I feel bad when poor drivers have to wait for me to cross the street), lightened my heart considerably.  When I’m at church, where I’ve been in Nursery so long not many people know me, so many people ask if I’m all right.  I have to explain constantly, but I don’t mind.  I am honored that I am a recipient of their kindness.  It’s made easier to explain by the fact that a friend of mine that’s also in the ward also has EDS.  Tessa is amazing — she has three kids and when her printer broke, she wrote her entire talk out by hand.  If you don’t have EDS, you can’t know how much that must have hurt.  I never would have done that, at hers is even worse than mine.  She and Sarah are constant inspirations to me.

Blog about disability - comment below it that made me cry: "Daddy, are you going to work with those people who have different possibilities?"

(This is absolutely awesome!  I need this, guys!  Mall, here I come!)

That so many people care gives me so much hope for the world.  Perfect strangers, good friends, my family — as long as people like them exist, the world is a beautiful place.  They’ve really shown me what love and caring is all about.

Cheers!

Ana

A happy zebra. Must have been watching "Stripes."

(P.S. The zebra is the mascot for EDS.  Isn’t this’un so cute?)