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;)