A Look Back

     Just like most of your Facebook and Instagram friends I've been looking back at 2015 and evaluating what's gone on this year.  2015 was harder than I had imagined (I don't think we often imagine a hard upcoming year when talking about New Years resolutions), but it was incredibly rewarding as well. Learning more and more about myself is helping me become more self aware and self confidant.  Not exactly the typical "I'm going to travel the world and find myself" year that would have been fun, but at least for now I haven't had much interest in traveling so finding myself from home works.
     2015 started off with me being recently diagnosed with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome).  I was doing better with being able to walk around the house and such but then went downhill for some reason that I can't quite remember.  I'll spare you a long story about the day to day hardship of it all, especially because if you're reading this you may have followed my journey through this very blog, but simply put it got difficult.  The good thing about it is that on most days I felt like it was all going to get better just around the corner, which is probably because this is a saying my mom has used for my entire life. 
     I recently realised two deeply conflicting thoughts that I have about health.  First off is that I have, on numerous occasions, forgotten about being sick.  I kid you not, I have woken up many a time and started going about my day just to be rudely interrupted by nausea and passing out.  I've woken up on the floor of the bathroom completely baffled by passing out, the thought "but I'm not sick!" ringing through my head.  Just the other day I tried to pull myself up onto the counter so my dad could wash my hair in the sink (thanks dad:) and ended up laughing so hard at how my arms quivered because I'm much weaker than I had anticipated.  There was a time in my life were I was considerably strong, and though that time in comparison was brief I find myself identifying with it more than my weakened state that has been a larger part of my life.  The second thought that contradicts the first is that a small part of me worries what my identity will be without sickness.  The good part about that is I'm see a future where sickness won't be such a integral part of who I am but, the part I don't love admitting is that in the past it has been.  Who will I be without sickness?  It may seem silly to worry about but think about losing something about yourself, whether it be good or bad, doesn't it change things?  I've been in a role of dependency, a role of only getting to live out parts of my whole self, a role of being a second class citizen to my body's rules.  I hope that doesn't sound victimizing or 'oh pity me'.  I just mean that there are these parts of who I am that have taken a backseat because of being in survival mode.  It's exciting and also a little scary to dig deep into the messy backseat and find those pieces of myself. 
     This year I feel that I've grown a lot and learned more than I could've imagined.  I've been able to reteach myself how to knit and enjoy countless hours of creativity.  I've somehow ignited an excitement of learning, especially in the subject of history.  I have a deeper testimony in Jesus Christ and my Heavenly Father as I finished the Book of Mormon for the first time.  I've come to understand my worth and importance on a deeper level.  I have relearned how much I truly love writing and how doing it more is so beneficial to my mental well being.  I have a greater appreciation for every good day, every good hour, and every good minute in my life.  In short life is good:) So here's to a year of finding/loving/becoming my most authentic self! Bring it on 2016!

T'was a Merry Little Christmas

     If you've been following my blog posts in the last few months you'll know that I'm doing much better, it's amazing what retraining your brain will do (NueroFeedback).  Thanks to my motivation to watch Ellen almost everyday I've been going downstairs more, even more than once daily somedays:)  The past two Sundays I've been able to go to church which I haven't been able to do in about a year.  To be honest I was more nervous than I care to admit to do all the socializing that comes with going to church, but it went so well and it was lovely to see all the amazing in my ward who I know have been praying for me.  After the first time back I was excited to go back, especially in my new dress.
     This year my grandparents on my mothers side were here for the days leading up to the 25th and Christmas Eve for the first time in years.  I was so glad to have them around and celebrate with them.  My grandpa and I share a really special bond.  Maybe it's because whenever we visited his farm as kids I would help him with chores and with the horses, or maybe its because I was crazy enough to get on a horse that hadn't been ridden and got myself bucked off, proving my "spunkiness".  No matter the reason, my grandpa and I are very close so when I asked for a Priesthood blessing he gladly obliged.  After an amazing blessing I looked up to see tears in my grandpa's eyes, my tough, cowboy, John Wayne loving, 88 year old grandpa who I have only seen cry twice in my life before.  Obviously I was crying too as I was able to stand and give my grandpa a hug.  Its been years since I've been able to hug him or anyone else while standing.  I've found that everyone is shorter than I expected.  I stayed up late not because I was too sick to sleep but because I was so well and I didn't want to miss out on it for a second. 
     On Christmas Eve we always open one present, as many other families do.  I had been very sneaky this year about my gifts to my parents and I was so proud of myself.  My dad has these 30 year old slippers that my mom's grandma made for him when they were first married.  My mom had several pairs of the same slippers over the years but she wore through them faster.  My dad's are pretty destroyed but he still wears them.  So my mom suggested that I knit him another pair and then in an entirely different conversation my dad suggested that I knit some of the same slippers for my mom.  So I proceeded to knit these slippers and keep them a secret from both parents, which was not easy seeing as we all live under the same roof.  So I knitted dad's in a cherry red (the same as the ones he had before) while he was at work and mom's in a deep purple in the hours that she was working in the other room from home.  I also knitted most of my other gifts that I gave out; a warm headband with a bow for my sister, a beanie for my brother and pair of elf inspired slippers for my sister.  For my little brother I got a Good Mythical Morning t-shirt because there wasn't anything much to knit that he would use.  When I finished all this knitting I realised that I still had a few weeks until Christmas so I went on to knit another pair of slippers for myself.  I wrapped them up and opened them on Christmas Eve after my parents opened theirs first.  Normally I wouldn't give myself a present, obviously, but I wanted to wear them on Christmas morning:)  Both my mom and my dad were completely surprised and very happy with the slippers.  And the other plus was that my grandparents were there to see the slippers inspired by my grandpa's mother, they were pretty surprised by them too. Here's some pictures of mom's slippers and mine as well:

     I also had time to make some other stuff as well.  I've been making baby booties for awhile so I thought I'd try other baby things because they're easy and quick, so I did some newborn hats, followed by this softie:

    After that I went a little further and did a couple baby sweaters!  I really like how they turned out, though I'm not quite finished.  I still need to add buttons, otherwise those button holes I knitted in them would be a waste.  I'm also debating whether or not to add pockets on the beige one...

     Lastly I started a baby blanket on the Friday before Christmas and had it done by Tuesday!  This picture doesn't really display its size but I think its quite a bit of knitting for 5 days.  When it is all laid out it looks like it has some stripes because some rows of the stitches are small and some rows are larger.  I tied it up with a red ribbon and will probably keep it in my cedar chest.

     Having grandparents visit, all my siblings including my brother home from Boston and extended family from my dad's side all close by makes it feel so festive!  I've already started using some of the gifts I got, and I'm excited for the others.  For example I'm typing this on my new laptop (Santa and I went halvsies on a black Friday deal:), listening to Justin Beiber's new album (haters gonna hate...but don't because he's making some great music right now), while breathing in the lovely lavender mist from the oil diffuser I got.  All in all it was a very Merry Little Christmas:)

    

Grey Area

     My life has been all sorts of a roller coaster the past couple months.  I'm learning so much about myself though.  For example I found that I tend to process information in a very black or white, all or nothing kind of way.  The grey area is uncomfortable for me, its all that information that doesn't quite have specific place to be organized into, its not neat and tidy and it makes me crazy.  I'm also finding out that I am a walking contradiction of myself, along with every other person on this planet.  Contradictions bother me and so I've been rather at odds with myself.  Here is an example; A person is either well or sick.  See, on a logical level I completely disagree with that statement, but when I can't do things I associate with being well or I have to do things that I associate with being sick I feel like I can only be one of those things and for so long I've always been the latter.  So I'm wading through this middle ground, this no man's land and I can't label it.  I can't sort it into a specific place in my brain.  Logically, I know that's fine but at the same time there is this deep, sometimes irrational, need to SORT ALL THE THINGS!!
     So when people ask how I'm doing (the people who want to hear more than, "fine, how are you?") I'm not quite sure how to respond.  The truth is, physically I'm doing better and I'm incredibly proud of what I've accomplished recently, but it's...different? than I had imagined getting better to be.  I had envisioned a staircase that I would gradually ascend over time, occasionally stumbling and having to do some steps over again but all in all I would be going in one solid, defined direction.  Instead of that it's been more like the ebb and flow of the ocean.  Some high highs and in comparison some low lows.
     I realise that all of this confusion and grey area sounds like a negative, or maybe I just interpret it that way because its not a concrete settled thing, but I'm trying to make it a positive.  Who else has enough time on their hands to really delve within themselves and find out how to be more in tune with who they are?  To find their strengths and weaknesses and make them work to their advantage?  Not many people have the opportunity to do what I'm getting to do. 
     A very wise woman in my ward told me to "create evidence" that I'm getting better.  Which is just to say that I have a lot of evidence that I could tell you to prove that I am (or have been) so very ill, but instead of collecting that kind of proof to look at the things I'm able to do that I wasn't able to do before.  I've really liked keeping a list in my phone of the little things that many take for granted that I've been able to do recently.  It gives me a way to stop and think about the accomplish, remember it better and be grateful for it, however small it may be.  It also helps on bad days to look back at this list and remind myself that a bad day doesn't been I'll be sick forever because just look at what I was able to do other days.
     I mentioned this last post but one of my goals has been to go downstairs to watch Ellen at least a few times a week at first.  I've been pretty good about doing this, which not only makes me super proud of myself, it also motivated me to try to go up and down the stairs twice in one day!  Just this seemingly simple thing has opened my life up quite a bit, my world is now twice as big.  Proving to myself that I can do the stairs let me be more willing and able to do spontaneous fun things.  About a week ago I went on a drive with my dad and little brother to see all the Christmas lights in our neighborhood and surrounding ones as well.  It felt so festive and let me just focus on positive things.  Today my fun things were, putting on make up and painting my nails.  It proved a little difficult to sit up and put on make up and even though my heart rate jumped I was committed to finish.  It's nice to do differently things than just laying in bed.  I've also been working on Christmas presents and I just finished a Ken Burns on the Roosevelts, which was amazing.  If you're ever down and have about 10 hours to spare check it out on Netflix ;)
     So that's whats been going on in my life.  I hope you all had a happy Thanksgiving and are enjoying a Merry Christmas season!

Thanksgiving

"When I'm worried and I can't sleep,

I count my blessing instead of sheep,

and I fall asleep counting my blessings."

-Bing Crosby 

in White Christmas

     Its Thanksgiving today and I can't help thinking what a crazy year it's been.  This time last year I was stuck in a hotel in Arizona with my parents as we tried to figure out insurance stuff for my Mayo Clinic visit.  It didn't quite feel like Thanksgiving being away from home and the rest of the family, beside it was only about 80 degrees outside and something about that in November feels wrong.

     This Thanksgiving was different.  I've come to appreciate my family on an even deeper level this year and I felt like I should write it down.

     I'm grateful for a mom who has gone above and beyond in all sorts of categories.  Who has taken care of me, held my hand through the scariest moments, who has literally picked me up off the floor and help me get a hold of myself, and who has hefted a heavy wheelchair in and out of the car a few times a week so I can go to appointments.  I'm grateful for a father who holds the priesthood and can give me blessings, who has washed my hair in the sink when I'm too tired to shower.  I'm grateful for a 14 year old brother who has brushed my hair and played countless hours of Candy Crush with me.  I'm grateful for an older sister who has come over just to sit with me and keep me company, as we've entertained ourselves with old seasons of Modern Family.  I'm grateful for an older brother who calls to check in on me just because, shares fun stories about his life, and sends me articles to read online.  I'm grateful for a younger sister who calls while walking on campus and puts a smile on my face with her positivity and fun college stories.  I'm grateful for childhood, high school and college besties that have been there through thick and thin.

     I'm also grateful for my improving health.  Wednesday was the best day I've had yet!  I got up and went to my Neurofeedback appointment, followed by going on a fun drive with my mom.  Usually that would be all I would be up for doing in a day, most days I get to do one thing but I think that's all changing.  After the drive I showered and walked back down the stairs!  My new goal is to walk downstairs everyday at 4pm to watch Ellen, and yesterday I got to watch Ellen for the first time in almost a year.  It felt like a turning point, so thanks Ellen:)  After that I stayed downstairs for five hours for our annual girls night where we watch Little Women.  My cousin and uncle stopped by for a visit before I walked up the stairs and finished off the day staying up until 1:30am talking with my little sister.

     I know it all sounds cheesy and you may all be annoyed with the month of gratitude Facebook posts but Thanksgiving is all about reminding people to be grateful and even if its just for a month than Thanksgiving is still serving its greatest purpose.

A New Chapter

     October 5th, 2015 felt like a monumental day for me, like things may never be the same.  The Bright Eyes song "First Day of My Life" played in my head as I felt the new beginning envelop me.
     For the first time my excuse for not posting about something as its happening isn't because I didn't feel well enough to write, its that I wanted to enjoy feeling good.  Also I didn't want to get too excited about a treatment after only one session, it could easily be a one time thing, right?
     Now after a 4th session I feel like I can share what has brought on this new chapter of healing, Neurofeedback.  Neurofeedback (and I apologize if I'm spelling that wrong) is a therapy that they use for all sorts of things; anxiety, ADHD, depression, addictions, PTSD, etc. and because of the last one they often use in it the military.  I came across Neurofeedback by reading some article that lead me to another article that lead me to an article about Neurofeedback.  About a half an hour after I had been reading about it my mom came in my room and said "have you heard of Neurofeedback?" apparently she has a friend who had her son do the treatments and it really helped his depression.  As I started to tell mom I had just been looking into it my dad walks in and asks the same thing!  Coincidence?   I think not!
     What I had gathered from my reading is that they use and EEG (a machine that uses electrodes placed on your head to see brain activity) to map out what your brain is doing and then using some sort of stimulation redirect/retrain your brain.  For some reason even though I didn't really get how it worked it just seem to fit.  I can't take medication because of my metabolism disorder and I always felt like using a medication was just a band-aide for a deeper problem.  The brain is the epicenter of your entire being, nothing happens without it first starting in your brain.  You don't feel the pain of a broken arm until your brain tells you to, you don't sweat until your brain tells you to, you don't pass out without that message starting in your brain.  With that logic I thought, something is wrong in my brain and what if we could start there instead of skirting around the issue?
    We tried to get into the select few places near by that offered Neurofeedback and eventually ended up at a place called Suncrest, which is a counseling center.  Let us keep in mind I have been bed ridden since February so almost 9 months, and had only been in a car once in that entire time period.  So even though Suncrest is about 10 mins away it was a huge worry for me to be able to get there at all.  I had a Priesthood blessing and through some divine help I was able to make it there without passing out.  Granted it was difficult but I got there.  When we got into the room I couldn't really talk and was shaking but still awake.  The therapist said she had been trying to call my mom yesterday so she would know what my story was and how she could help best but my mom had lost her phone or something.  As dad started to explain that I have POTS her eyes widened and she said "my daughter has POTS".  If you have a bizarre chronic illness you know how rarely people know what your condition is let alone have a really personal connection to it.  Nuerofeedback is not exactly famous for working with POTS patients so to hear that this therapist that we just "coincidently" got in with knows what POTS is, has a daughter with it and has treated another person with it is really a miracle.  She did the brain mapping (if you are googling Nuerofeedback you can add the term "brain mapping" and it may help) and was surprise to she that I had little to no anxiety lighting up.  I attributed that to meditation (thanks Stop, Breath, Think app;).  We also learned that my brain is just firing off way to much, and my fight or flight response is out of control (which is usually followed by passing out) and was off the chart they have for normal brains.  The therapist said she couldn't cure the POTS but she may be able to help with the symptoms.  We headed home and I keep feeling hope and peace all rolled into one.  Usually I'm more of a pessimist about treatment plans, better to expect nothing and be surprised if I'm wrong, right? But this time when I started to think that way I just couldn't convince myself not to feel hope.
    October 5th: Dad started a new job so it was just mom and I going in to my first treatment appointment.  My therapist put on the "thinking cap" (a cap with all the electrodes placed in it) and gave me some ear buds to put in.  All that I had to do for the treatment was listen to these weird noises, its not music and its not exactly beeps but a bunch of what seem to be random noises.  But there not random, they are set up to catered to exactly what I need and for some reason this brings the brain activity to the correct place.  Like leading a camel to water, my brain drank it up it had been deprived for my entire life.  About 5 minutes in I began to cry.  I was finally okay.  It felt like what I would expect a sedative to do but have actually experienced.  I went from flushed, shaky, nauseous, and passing out to feeling...normal?  I think thats what I was feeling.  Normal.  Not having to talk myself through every moment of my life.  Not having to block out every noise so I could focus on lowering my racing heart rate.  It was the biggest sigh of relief I've ever taken.
     Since then I've had 4 treatments and I'm going in for my 5th tomorrow.  Yesterday after a session I even went on a drive with mom, for fun!  Not only that I was able to shower on the same day, even though I had already done A LOT, well by my standards anyway.  I'm not the only one to notice either, my parents have noticed a difference and my Psychical Therapist who comes out to our house has notice a HUGE improvement in what I can do and how long I can stand.
     This is it guys.  It may not cure everything, but all I'm asking for is being able to walk around the house and maybe eventually work out.  I'm feeling really hopeful and excited!  We even got a new wheelchair that leans back which makes getting to the appointments easier but hopefully I won't need it at some point:)

Knitting and Netflix

     An amazing thing happened this week, I was able to think.  To most people this is something that comes naturally but when you're in survival mode and have chronic brainfog thinking isn't at the top of your list.  Yes I can almost always think enough to get me through the day but there's something that feels like its slowing your brain down, so when that clears its amazing!
     Since I've been able to think more I've switched from watching movies I've seen a hundred times to documentaries and I've been loving the feeling of learning!  So far I've watched one about Leonardo Da Vinci and one about Winston Churchill (both on Netflix, btw).  I've found out that I really like history, it's basically just stories about people and I like that.  Another movie that I watched was Gifted Hands, about presidential candidate Dr. Ben Carson doing the first ever separation of twins conjoined by the head.  There were quite a few surgical scenes that I didn't watch (because ew gross) and it wasn't a documentary but it was still quite interesting (again this one is on Netflix).
     The next thing I've been doing is knitting, which has helped me feel like I'm accomplishing something.  I found a super easy pattern/tutorial on Pinterest for baby booties and I've been knitting them like crazy.  I had to reteach myself (with the help of my mom and Youtube) how to knit but other than that its been simple, which makes it easy to finish in a day.  It's nice to be able to hold something and say "I made a thing!".  Here's some pictures:

This is the first one I ever made:)

The booties I've made in the last week or so minus a pair I sent as a baby shower gift.

I plan on making a bunch of the white ones because they are so soft!

 I'm super proud of this egg plant purple scarf I knitted over the course of 2 days

 because last time I made one it took me a couple of weeks.

I made hot pot holders for my mom's birthday coming up next month, 

I may have ruined the surprise but I know she likes them:)

     Last week I also came to terms with the fact that my hair was just too long to manage.  I couldn't brush it or do it myself and I started to feel like that was rather selfish, so I cut off 8 inches.  Here's the ponytail that I'm going to donate to the organization Children With Hair Loss:

     Lastly I've had some friends ask about the bed bike that I talked about in my last post.  So far I've used it once and it went pretty well.  I actually have to lay on the floor to use it because its unstable when I put it on my memory foam topped bed, but the floor is just fine.  I might try wearing shoes next time to see if that makes it easier, but so far so good.  I decided that since I was taking photos of everything else and you probably don't know what a bed bike looks like I'd give you a little better idea.

     Hopefully all this positivity can continue and I'll be able to do a little more every week:)

Fear

         This month I’ve been focusing on fear, and although that doesn’t sound positive, the outcome has been.  It kind of happened by accident, I was talking to my mother and I was getting more and more frustrated about my life I just started to cry and ramble.  It was then that I realized that I had at least a decade of pent up fear that I was holding onto, just clenching onto it and refusing to feel it.  Maybe all the pressure of bottling it up made me burst or maybe I got nervous about something else and it was the last straw.  No matter what brought it on I was finally “allowed” to admit to how scared I always am.  I say “allow” because for over ten years I told myself that the fear wasn’t helpful and that if I looked or acted afraid no doctor would take me seriously. 

            Its not that that feeling came out of no where, I had already spent years trying to be diagnosed and more often then not they would tell me that it was just anxiety.  Hearing that over and over again was frustrating not only because there is no such thing as “just anxiety”, it’s a real thing that needs to be taken seriously, but also because I knew anxiety wasn’t making me pass out or get so sick.  So every time I went to the doctor or even talked to people in general I ended up hiding the fear, like it was a crime to be scared.  I was so determined to be listened to that I stopped listening to myself; I shoved those fears down because I was too busy trying to be okay.  Having this condition has put me in some scary, and I would even go as far as saying traumatic, situations.  I some what described my most traumatic event in my post called Type 2 and I’m still dealing with all that fear.  But the reason I say that the outcome of this has been positive is because I let some of the fear out and now I’m aware that its there.  There are people or doctors who would say that the fear was keeping me sick and passing out but I just don’t have to care anymore.  Dealing with the fear is part of the healing because I have spent so much energy keeping that fear buried.  Even if I was doing it subconsciously it still has taken so much energy that I could’ve been using to get better.

            Since my realization I’ve been working on handing the fear over to God.  We really don’t have much control over what happens to us in life so hanging onto that sense of control creates frustration and fear.  By letting go, giving God the fear and trusting in Him to make things okay no matter what happens, I became liberated.  For me its God that has helped me get over this hurtle and I am so grateful to be working on the next step in my life.  I have so much extra energy that I’ve put into being creative and feeling alive.  I’ve started knitting baby booties just for fun (and they’ll make good future baby shower gifts).  My mom also bought me a bed bike, which is basically just a stand with pedals that you can set on your bed and cycle while laying down.  I haven’t used it yet but with my new found energy I feel like I can actually do it now.  The exercise is supposed to help P.O.T.S, so here’s hoping!

What if...

            In the last couple weeks I’ve read quite a few articles and blog posts by people with P.O.T.S. and I’ve noticed two running themes, marathons and whining.  When I started my blog I was worried that it would ere on the side of pity me and I hate reading blog post like that.  Sometimes chronically ill people like to vent about how terrible their life is how normal people have it perfect.  It is true that “normal” people have something we don’t have, their health, but everyone deals with something or another in their lives.  The other extreme is recovery stories and how they started running marathons and life is now awesome.  Don’t get me wrong, these stories can be inspirational and if I suddenly got better I may take up running (or just walking around the house haha) but there’s something about these posts that really rubs me the wrong way.   I’m probably just jealous I guess.  In most of these posts the blogger had a normal healthy childhood and then suddenly got sick and then by some miracle was diagnosed quickly, given medication that actually worked and stared their new marathon running life.  What a joke.   It probably was much harder than that and they’ve condensed their story but even with the regular stories I find that I don’t really fit into my very small niche.  I’ve been dealing with these symptoms for my whole life, and I can’t take the medication that they prescribe for my condition.  P.O.T.S. altered my childhood and teenage years.

            My mom and I were watching the Pioneer day parade about a week ago and we started talking about what my life might have been had I been healthy.  We decided that I would’ve gotten a horse and maybe done barrel racing like my grandpa did.  I loved horses as a kid, still do, but I could only ride when I visited grandpa.  I did however take care of my neighbors’ horses one more than one occasion when they went out of town.

            We continued dreaming about the fact that I probably would’ve continued playing soccer passed the 3^rd grade, and would’ve danced far passed 5^th grade.  I probably would’ve graduated from the same high school as my friends and not the alternative high school.  I probably would be a senior in college, finishing up my early elementary education degree and going on to be a kindergarten teacher.  Mom threw in that I would’ve been a beauty queen, but she’s probably a little biasedJ

            After dreaming about what I “should’ve, would’ve, could’ve” done I realized that even though life hasn’t turned out as I may have hoped I have accomplished some things that I’m incredibly proud of.  Here are a few:

Kindergarten Aide:  My first real job.  I had told myself that I would never be a teacher because I come from a family full of them and so I have heard the horror stories.  The stories about the pay not being so great, having to work within the system to help kids and hitting a bunch of walls and most of all the crazy parents.  I kind of happened upon this kindergarten aide job, I was volunteering for a lady in my ward who is a kindergarten teacher, helping her with the first couple of days of school.  The position opened up and the teacher I was working with demanded that they offer me the job.  It turned out to be the best job I’ve ever had.  I really fell in love with the work and not to sound prideful or anything but I was dang good at it.  The three kindergarten teachers I worked with started letting me teach the class and work with the especially difficult kids who had a hard time responded to others.  One day they even let me substitute teach the class, keep in mind I was fresh out of high school and had just recently turned 18.  This dream job made me pick Early Elementary Education when I left to college 5 months later.

College:  In my family you go to college after high school, that’s just what you do, which is probably the biggest reason I went to college at all.  Don’t get me wrong, its not like my parents pushed me out the door or anything but it just seemed like that was the natural next step.  I actually decided on the college I was going to go to when I was bedridden at Primary Children’s hospital.  I decided on BYU-Idaho and to room with one of my life long besties.  BYU-I has a different track system so I didn’t start in the fall I started right after the New Year, 6 months after I graduated high school, which gave me the opportunity to have my kindergarten aide job.  I was only at college for one semester and only took two classes but it was still hard.  I passed out a lot and my roommates found me on the floor a couple times but I had really cool about it and that helped.  Even though it was hard I loved college, I spent a lot of time cleaning the apartment and watching Project Runway.  It may sound stupid but it was some of the best times I’ve ever had.

Guitar:  I’m not pretending to be any kind of musician or anything but it’s a fun hobby.  I think it was my junior year in high school when my mom bought me a $60 acoustic guitar.  To this day she still says it’s the best sixty bucks she’s spent, she always wanted musical children but we all quit piano lessons.  I never learned how to read music but I did teach myself the basic chords that can carry you through most songs.  Click the links below to hear some recordings from over the years:

Let It Be by The Beatles

 Kingdom Come by Coldplay

And here is an original written by my brother Andrew, my friend Kim and myself: 

 East of Eden by Trees Talk Back

            My life has presented me with some obstacles as has everyone else's life, but I’m trying not to let those obstacles make me feel like I’m unsuccessful.  Sometimes I just have to redefine my version of success.

Disablity Awareness

Awareness; why is it so important to the chronically ill community and or any other diseases?  Well remember back a couple years ago when the Ice Bucket Challenge blew up your Facebook newsfeed and you got pretty sick of it real fast?  I remember asking myself, “Why did they start this?  What does it have to do with ALS?  Is it even ALS that they’re trying to raise awareness for and how can that even help at all?”  Even though I’ve been sick for most of my life I didn’t understand what good it would do for people to challenge their friends to dump cold water on themselves.  But here is the key; it was catchy and spread like wildfire.  And even though I’m sure the real message went over many peoples heads (get it? They were dumping water over their heads haha) if just a few people knew more about what ALS is, what it means to live with it, it helped.  Even if you weren’t able to donate money or you’re not a doctor so its not something you can directly help out, it helped.

Here’s why.

When you’re diagnosed with a chronic, terminal, or life altering illness your future is taken away, you feel alone.  Often people will go from a normal healthy life to survival mode within weeks.  Or a kid will have their entire childhood slip through their fingers only to be replaced with doctor visits and hospital stays.  Not only is it devastating but also with a vast majority of autoimmune or other chronic illnesses there is not much treatment or knowledge about them.  Sadly, sometimes this lack of knowledge will lead to not being diagnosed for a long time or even worse being badly treated by uneducated doctors.  I can not tell you how many times doctors have told me I just want attention, that I’m manipulating, depressed, anxious or my personal favorite that my problem is that I’m a girl!  I can ultimately laugh at these situations now but it wasn’t always that way.  If there is more awareness that what you’re dealing with is in fact real, it takes away from the heartache.  Isn’t it hard enough to have to deal with diminished quality of life and then to be judged by the very professionals that are supposed to help?

            So now you know why it’s important for doctors and researchers to be more aware about the ever-growing number of diseases but why should the public be aware?  What you may not know is that people can have invisible disabilities.  We can look completely normal and be falling apart inside.  If you’re not aware that there are disabilities that you can’t see you may be quicker to judge, and though many of us are used to it by now, it will always hurt a little.  I’ve read numerous stories about people parking in a handicap spot (with a handicap sticker) and being harassed and even spit on by people who think they are protecting the disabled community.  Spitting on people is just rude, no excuse, but usually its people who are just misjudging a situation because of innocent ignorance.  This is why it’s important. 

I don’t talk about P.O.T.S. because I want pity, attention or to shove it down anyone’s throat.  I talk about it like you would talk about your job, your job is hard but you do it because its necessary for life and it’s a big part of your day to day routine.  P.O.T.S. takes over my day, it’s hard and I complain about it and it helps when people know what I’m talking about and validate what I’m going through.  For the most part my family, friends and peers have all been very sweet and supportive, but not everyone is so lucky.  I guess what it really comes down to is the golden rule; treat others as you would want to be treated.  It applies in every situation but seems even more apropos in this one.  When you see someone parking in the handicap zone looking normal, think of it from his or her side.  I believe humans are mostly good so I’m not going to assume they are parking there for no reason.  This goes for the chronically ill as well, next time you think you’re being judged assume the best, don’t jump to the defense right away, most people are just trying their best with what they have.   

I'M FEELING 22!

            July 3^rd was my 22^nd birthday.  I’m not huge on birthdays but this one I felt like I wanted it to at least be a good day.  It’s not that I don’t like my birthday or anything, I think it has more to do with the fact that mine is the third birthday in what we at our house call “birthday week”.  It’s actually over the course of two weeks, but the last week of June and the first week of July both my brothers and I have birthdays.  Anyways not only did 22 turn out to be one of the best birthdays it was also one of the best days I’ve had all year. 

            The birthday festivities actually started on the evening before my birthday.  My older brother was too excited to wait to give me my present the next day so I got to open it early.  Apparently he had gotten the rest of the family to pitch in so they could buy me a tablet!  I’m super excited about it because it will give me more was to entertain myself when I’m stuck in bed.  He even picked out a pink tablet, good pick brother!

            Birthday morning started right with waffles and singing happy birthday.  Not long after that my neighbor and birthday buddy Jack came over.  Jack is turning 73 this year, just a few days after my birthday.  For a couple years now we’ve gotten ice cream and taken his amazing Corvette for a spin.  He’s as good as a grandpa to me.  This year I wasn’t up to going out so he stopped by in the morning with a beautiful cake and mint chocolate chip ice cream (because he knows it’s my favorite).  It was so very thoughtful.

            Throughout the rest of the day I had more visitors than I’ve had in ages.  Usually talking wears me out but I handled it better than I thought I would.  My visiting teachers from my home ward came and sang to me and brought me chocolates.  I’ve known these sweet ladies since I was a kid and I’ve adopted them as grandmas, they are so amazing!  Also my friend Jenn and her fiancé came to visit and brightened my day.  After that my aunt and uncle came to wish me a happy birthday and brought along with them my uncle’s dad Dan.  When I went to the mayo clinic we stayed with my uncle’s parents for almost a month, so we’re family.  Dan is a massage therapist so he came on my birthday and gave me a massage.  As if that wasn’t enough my cousin Julie stopped by with a movie she bought me.  It was so awesome to see her and her little family, I just felt so loved. 

            I also felt loved seeing all the people who wished me happy birthday on Facebook, via text, etc.  It seems simple but it really does feel nice to know people are thinking of you for a couple minutes in their day.  Or in my Grammy’s case all the minutes in the day, she out did herself by making me this huge pillow that helps me either elevate my legs or sit up in bed.  Plus besides having functional purposes its really cute!

For as long as I can remember we have always done sparklers and maybe some other fireworks on my birthday.  This proved a little more difficult this year but I made it down the stairs (yay!) and out on the porch.  I had a fan on me and I didn’t stay out more than about 10 mins because it was still pretty hot and P.O.T.S. doesn’t react well to heat, but it’s progress!

After that we light the candles, sang happy birthday and I blew out the candles.  There’s something about a birthday wish that feels like it counts more, maybe it’s because you only get one a year but I feel like 22 is going to be a good year;)

Steps to Progression

I wanted to write this posted days ago but as usual my health gets in the way.  I know I touched on the subject in my last post so I didn’t want to bring it up again.  But then I thought, when in life do we just deal with something once?  When do we ever get to just feel a feeling, check it off our list and be done with it?  Never.  I have to deal with the pain and sadness that comes with being held back.  I have to deal with it everyday.  I have to deal with learning that some days, no matter how hard I push myself or want it, I just can’t physically or mentally do the things I would so like to do.  I love writing; it’s relaxing for me.  Since it is a release and a relaxation for me I feel like I should be able to do it any time I like.  But then I have days when I try and the words don’t come so easily and it turns from a release to a homework assignment. 

            Let me be very clear that I don’t say this for pity.  Yes, there are things I can’t currently do, but with that comes a gift.  You see, when I do something that I haven’t been able to do for months at a time there is this overwhelming sense of joy that I can not quite explain.  To give you a clear example I’ll tell you the story I wanted to post a few days ago.

            For those of you who don’t know my situation very well here’s the short version; I pass out basically every time I stand up and have been bedridden since February/March.  I live on the second floor, which means a large staircase is between me and being a part of the fun that goes on in the house.  To my families credit they have moved all the games, movie nights, and get togethers to my room so I can be included.  Anyway, the staircase has become this huge hurtle to get over, literally.  Even going down is very difficult.  But on June 20^th, 2015; after approximately five months confined by my illness to my room; I ventured down the stairs.  I sat in the wheelchair in the front doorway and breathed the summer night air.  I had been craving fresh air on my face and I guess I got so stir crazy, because as I sat there I felt tears in my eyes.  I was going to be okay.  I could be happy.  I could let go for just a moment and relax instead of white knuckling my life.  I felt the sweet joy sweep over me and I wished everyone could feel what I felt when the warm breeze hit my face.

            I stayed downstairs in the wheelchair and laid on the floor for about an hour, I would guess.  I even had a P.O.T.S. episode when our dog barked from outside because he wanted to be in on the fun.  I jumped out of my skin when he barked and my heart raced but I recovered surprisingly well.  So it wasn’t all easy, breezy or beautiful (cover girl haha), actually it was very difficult to stay sitting up in the wheelchair and walking down the stairs, not to mention getting back up.  But it was worth it.  So worth it, I worked hard and was gifted with overwhelming joy and a sense of freedom.

            After Saturday things got hard again and I got sad, but I had that joy to hold onto.  I wish everyone could feel that joy in everyday things.  How amazing would it be if we took less for granted and felt the joy of just being?  I could obviously work on that some more because even on a bad day there are at least small things that I can do.  That’s my goal this week; focus on the things I can do, acknowledge them, think about what life would be without them and then be grateful for that ability, however small it may be.  That’s my goal, what is yours?

Honest Truths

            I’ve been wanting to post for a couple weeks now but I either didn’t quite know what to write about or I was too sick.  I tossed around the idea about reviewing the Dick Van Dyke Show, which I do suggest you watch if you haven’t.  Though I have thoroughly enjoyed watching countless hours of Dick Van Dyke and Mary Tyler Moore’s funny antics I didn’t think that merited a whole post.  Plus I talked about Netflix shows a couple weeks ago.  Then something happened, I walked down three whole steps of our staircase.  Though this may seem anticlimactic to most people, it was huge for me.  I started with three, then four, then five and then six, which happens to be half way down the staircase.  I could see the kitchen!  The main floor of my house still exists haha!  For all I know, after months of being confined to my room and upstairs in general, the main floor could’ve blown away.  Even though I was descending the stairs I was on top of the world!  I had been taking some supplements and it felt like we finally found a set up that was pushing me in the right direction.

            So why didn’t I post about this success as it came you may ask?  Well mostly because it disappeared as quickly as it came on.  See I have a condition that makes me metabolize things incorrectly, I think I’ve mentioned it before.  Like clock work after taking something daily for 4 days I start to feel weird and start having more POTS symptoms.  Something that was helping just the day before is now my enemy.

            This is far from the first time something hasn’t worked, its happened so many times but this time I broke.  I broke into a thousand pieces because for one second things were ok and I saw a light at the end of the tunnel.  Its sad how easily hope can drain and be replaced with despair.  I didn’t feel well physically or emotionally and I didn’t want to write about it either.  I’ve gone back and forth about if and how to write this post.  On one hand I don’t want to be a downer and be pitied for my life, nor do I want to sugar coat it and say that I’m okay and that there’s a bigger plan and all that stuff.  While it is true that there is a bigger plan, I sure don’t know it and I don’t know if I’m okay with how it’s going currently.  I figured the only way to address this post was to just be honest.  And honestly, it’s so hard, maybe harder than I can handle.  I don’t even have a clear plan for what to do next to help myself.

            So until I figure out my next step I’m going to read Calvin and Hobbes, disappearing into a world where the conundrums are more about what kind of snowman monsters to make and hiding from Calvin’s evil bicycle (if you haven’t read Calvin and Hobbes I recommend…nay I insist that you check it out).  Because as hard as life is, somewhere deep (currently VERY deep) down inside I somehow know things will be okay.  I can’t explain it, I just know, but I often forget so writing this down reminds me.

A Mishmash of a week

          Not too much has happened this week except an overall relief that my anxiety hasn’t been so bad.  I know what you’re probably thinking, “Well if your anxiety is better then maybe the rest of it is in your head too”.  If you didn’t jump to this conclusion, everyone who has a chronic illness thanks you.  Just imagine if your body was a ticking time bomb capable of passing out, going into shock and ruining your day at any moment.  Wouldn’t you become just a little nervous?  Sometimes the anxiety is not so bad and I feel empowered, like I can handle my life.  Other times it takes over everything, and I feel completely overwhelmed.  Having said all that, my point is that this week I don’t feel crushed by anxiety and it’s a huge relief.  It is so much easier to enjoy things, which brings me to what I had originally planned to write about, entertainment.

            A couple days ago I got the sweetest care package from my friend Janelle.  It had the newest Weepies album and a shirt with The Weepies lyrics on it.  It’s always exciting to get mail but it’s even better when it’s something you’ve really been wanting!  I made the mistake of putting the CD in late at night so I fell asleep for part of it but what I heard I loved.  I’m hoping that when I am able to play the guitar/sing again to do a cover of one of the songs.

            As for movie entertainment it has been kind of a weird mishmash of things this week.  Consider that I have a lot of time on my hands and I’ve already watched a lot of things.  Also keep in mind that anything, exciting, suspenseful, or scary is out.  I’d rather not raise my heart rate and pass out because I picked the wrong show.  I’ve also found this week that I’m over having every show have something dirty in it, I really don’t want to drive away the spirit when the spirit has done only good things for me.  As you can see with all of these parameters that narrows down my options and I’m left with some of my childish guilty pleasures, along with some other things.

Teen Beach Movie:  Now before you judge this musical Disney Channel Original Movie just remember when High School Musical came out and how much you loved (or maybe how much you currently love) it.  Teen Beach Movie may be lacking in creativity in the title department but it makes up for it in musical numbers and costumes.  Based loosely on the fun beach movies of the 1960’s, the plot involves modern day Mack and Brady getting sucked into their favorite retro musical “Wet Side Story” (like I said, they’re not very creative with titles).   The couple accidently messes up the storyline and they have to sing their way to get the story back on track in order to get home.  Cheesy?  Yes.  Fabulous?  Also yes;)

12 Dates of Christmas:  Just think “Groundhog’s Day” with less Bill Murray and more Christmas.  The premise is that Kate relives the same blind date on Christmas Eve 12 times until she falls in love with him.  There are so many inconsistencies and plot holes but the fun part is that with each date there’s a hidden part of the 12 Days Of Christmas song. For example, on the tenth day you can see a kid with a team named Lords and the number 10 on his hoodie leaping over some boxes.  Some of the other parts of the song are more obvious but I had to watch the whole thing with my little brother so he could help me find them all.

            So there’s 2 of my current guilty pleasures but I’ve also been re-watching Parks and Recreation, along with some Planet Earth and a Cosby show spin off called A Different World.  I don’t know how long I’ll stick with the last one because I read ahead on IMDB and found out that Denise (the main character) is only in the first season out of six.  What is that?  How can you continue a show without some of the leading characters?  I’ll probably watch it out of pure curiousity…  

Christmas?

            “I don’t want a lot for Christmas, there is just one thing I neeed…” Mariah Carey belts out as I sit here typing out my pent up frustrations into words.  No it’s not Christmas, its not even December, its May.  So why am I listening to Christmas Carols you may ask?  Well have you ever listened to hip-hop while you work out?  Or sad music when you have a break up?  Music creates emotional responses and sometimes I use it to counteract negative ones.  Christmas is the most wonderful time of the year, people are happy and kind and there is something to look forward to.  Most of the time life is not so magical and kind.

            Currently life has knocked me down and is doing its best to keep me there.  My body doesn’t function like others do.  My autonomic nervous system doesn’t work properly.  Your autonomic nervous system controls all the functions of your body that you don’t have to think about, they just happen.  For me my blood doesn’t circulate correctly, my heart will suddenly hurt and race.  My muscles and joints ache and there is an all over pain that I can’t quite put my finger on.  I get sick when I eat and sometimes I have random allergic reaction to things that I didn’t have any trouble with the day before.  Most of all I pass out so often that for the past two months I’ve been bedridden.  I have a syndrome called P.O.T.S. (postural orthostatic tacacardia syndrome).  My syndrome is actually not as rare as it may sound, but so little is known about it that many people go undiagnosed and the few of us who do get diagnosed usually spend years waiting for answers not to mention many doctors telling us we are crazy.  After all that there isn’t much that doctors can do for POTS patients.  There are some medications called Beta-blockers that can help with keeping your heart from racing.  These medications seem to help to some degree with most patients but it’s far from a cure.  So if you’re lucky you get diagnosed, start taking meds and get better enough to grin and bare it, you may even be lucky enough to hold down a job or go to college.  Some aren’t so lucky.  I guess after 21 years I had grinned and dealt with it for too long.  I’ve had the symptoms since I was 18 months old and they’ve only worsened through the years.  I wasn’t diagnosed until about six months ago but my mother (a registered nurse) had told me when I was about 12 that she was sure I had POTS.  Smart mom, right?  Too bad it took about a decade of failed doctors appointments and hospitalizations for someone to figure out what mom already knew.  I really didn’t want this diagnose though, because I had done enough research about POTS to know that there wasn’t much to be done about it.  Little did I know getting help would be harder for me than most other POTSies.  I also happen to have a condition where I don’t metabolize certain medication correctly, so if I take the meds that are on the list of no no’s the drugs will build up in my system and become toxic.  Unfortunately all beta blockers are on that list, which explains why when I had taken them in the past they would work for 4 days and then I would start passing out more.

            Dealing with all this on a 24/7 basis can be incredibly frustrating.  It takes over my life and dictates everything.  I can’t make plans, I can’t do much more than distract myself from the pain and discomfort.  Sometimes it feels dark and hopeless and like nothing good is going to happen.  So to counteract those feelings I listen to my favorite Christmas carols from childhood and it takes me back to a place where I can remember that my life has been good and worth living.  Even though I feel incapable to the task at hand and wonder why I even have to endure it, I remember that it won’t always be this way.  And if Christ can come to the earth and be laid in a manger and suffer not only for our sins but our afflictions, our pains, our aches, our self doubt, our fear, our feelings of inadequacy, then can’t I at least make it through the next five minutes?  And then the next. And the next.

            And although I may not want a lot next Christmas and the one thing I do need is my health, that doesn’t mean I want it more than I want what God has planned for me.  Because if someone with all knowledge offered to keep you in their care if you just trusted them wouldn’t you want that more than trying to do it on your own?