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;)