It has taught me life lessons that God had been trying to teach me for many years and I wasn’t getting it. For instance, before I got sick, I wanted to be a powerhouse, dignified, kick ass, business woman. I was going to teach people with disabilities just long enough to get a feel of the educational system then move on to researching autism in the neuroscience field then go on to change legislation, education blah blah blah.
I wasn’t going to be a mom, I wasn’t going to stop and smell the roses, and I cared more about being known a bad ass then the people I actually helped.
I took everything for granted, thought homeless people were uneducated because they didn’t care enough to pick up a book, jobless, because they were lazy, and homeless because they couldn’t balance a checkbook.
Don’t get me started on healthcare I was ignorant as …well.. I’ll keep it clean.
I thought minorities needed to get over their fathers past and move onto the present and that if they weren’t getting what we so called privilege white people were getting it was their own fault in some way or another.
Fat people were lazy and didn’t take care of themselves. People with drug and alcohol problems lacked control. On and on and on.
I thought me and my fine brain with my superior, Mensa level IQ meant many people around me were simple, not worth my time. Belittling people to their face with a side handed shady
compliments were a pastime of mine.
I was fake, like many people I grew up around in St. George, I thought that behavior was normal. I didn’t know what it was to be completely genuine. And loyalty was expected of my friends but if I was unloyal, well, there must have been a good reason.
I was a horrible, horrible, person.
I don’t think god gave me this illness, I don’t believe that’s how it works, it’s the luck of the genetic roulette, however I do believe God does step in when he can and helps things along. He didn’t step in and help my family and I find the right diagnosis, or medicine sooner because I needed to go through hell. I needed for people to take my ego and rip it to shreds. To help me understand the realities of this world. I needed doctors to claim I had Munchausen’s and not believe the very real pain was experiencing so that later in life when someone came to me and said, “I am hurting, I’ve been through hell.” I would understand the importance of believing them. I needed night after night, day after day of excruciating pain to humble and heal the horrible prejudices that were inside my soul. I needed to have to wear diapers, pee my pants and all over floors in front of total strangers so that I could learn humility and not care what people think. I needed my heart to stop over and over and over again so that I could get chance after chance to visit the other side and be thought the things I learned over there. I needed it to happen so frequently so that I wouldn’t confuse those moments with the other moments of DHT release. I needed to know what it was like to experience odd hallucinations and memory loss so that I would be able to understand what it was like for some many people I now work with today, from schizophrenics, to people with dementia. And I need my bad days, like I have had this past week where I am holding on with every ounce of self control not to burst into tears because of the pain so that all this comes back and I am reminded how much better I am because of this illness.
I now know being a mother and caregiver to another human is more important than any other carreer or political appointment. I now know better then to walk into someplace I volunteer and think that I have something to offer them that’s more important than what they will teach me, and I have abandoned the arrogance that would have clouded my ability to do that.
I don’t take anything for granted. I realize if it wasn’t for my dad’s hard work, and our good luck that my butt would be out on the streets.
I now realize I was a bigot, prejudice beyond belief and a borderline racist. I was so blind to my white privilege it makes me ache inside. How can anyone be so clueless?
I now believe people battling weight problems and addiction are some of the strongest people on earth. Every day they don’t reach for that poison that will ease their pain is a small miracle. And a waist size has nothing to do with how active or physically strong a person is.
My IQ dropped two standard deviations, and then according to my last test went back up a little. That was the biggest humbling experience ever. My words don’t come freely, they are trapped in my mind and I can’t get them to their mouth, like a prisoner I am trying to free them and organize my many thoughts so that I can learn more to further help others. It’s exhausting and taxing. Those that can find ways to progress and grow around those barriers are the true genius.
My family and friends taught me true loyalty. I’ve met people along the way who have taught me how to be truly genuine and the blessing that comes when you are truly one hundred percent yourself every moment of every day.
I am now a good, strong person.
And it’s all thanks to my illness and God waiting until I was ready to heal myself.
So, if in this moment you are struggling, for whatever reason stop and think, what am I supposed to be getting? I'm not progressing because...and if you can't come up with the answer pray for it. Become vigilant in not yourself, but what is around you, the answer is there, waiting to smack you in the face. Make sure your paying attention or else you will miss a great lesson and chance to become greater.
There’s another angel on
the streets of heaven tonight, a little man who I knew from volunteering at Muscular
Dystrophy camp. Tonight on facebook I’m
seeing many sad notes to our little guy, all sent with love and hope and condolences
for his family.
The lingering clock over
our heads is the hardest part of having a chronic illness. It’s something that
every human has but we are more aware of it because we don’t have the pleasure
of taking each day for granted. We don’t have to wait until an unexpected death
of a loved one or a tragic act of terrorism to happen for us to realize this
life is fragile. Our timer could erupt at any given moment.
This is a curse and a
blessing.
A curse because for some
you know you won’t live long enough to see certain events happen in your loved
ones lives; graduation, marriage, becoming grandparents, anniversaries. And because
of this you subconsciously or sometimes consciously distance yourself from
others. You become one of those dooms day preppers getting your things in
order, just in case.
I don’t know how to help
you stop the worry and fear, but stop .
When my niece was born I was at my worst. This beautiful bundle of wide eyes and smiles was now
in my life and I hadn’t loved anything that much ever. She would stare at me with her great big eyes
while she held onto my thumb and never looked away. I felt like her spirit
was somehow talking to my soul and I would often find myself weeping.
Weeping because I was so
grateful god saved my life all those many times my heart had stopped, thankful
that I now had my pacemaker so I could have this moment with my ray of
sunshine.
But I was also terrified.
Terrified that every visit would be my last, because my body would give out or because
I wouldn't be able to handle the pain anymore and I’d have to give up.
Those moments that
should have been filled with happiness and peace were filled with frustration
and anger and worry because I didn’t know if I was going to get to be with her
long enough to see her grow into the sweet angel she now is.
It was a waste, I didn’t
need to worry. And even if my time was to come and I wasn’t to see her grow
here on earth I would still be angry I spent those moments with her with those
feelings eating at me inside instead of just letting myself get lost in the
beauty of her soul.
Plan if you need to, but
don’t let those moments take over your life. Let yourself feel the fullness of
love from the world and people around you.
when it is your time to go you don't want to associate those sweet memories with your worries, you want to be able to take your bow and know without a doubt you loved, lived and laughed more then you ever feared.
I have a lot to be thankful for today. I’ve been on new
medication since my diagnosis of episodic ataxia and it has been nothing but life
changing. A literal fog has been lifted and everything is so clear again. I’m
more active, I can stand longer, play harder, and be myself again. I had almost
forgotten what that was like. This illness has been hard but it is also the
biggest blessing I have had in my life. Without it I wouldn’t have been as
compassionate, or understanding. I would have been arrogant, and felt little
need to reach out to others for help. Before, I was too independent, to
selfish, to close minded to understand what the important things in life really
are.
This illness may have crippled my body at times but it has freed
my soul.
I know what love is, what a true friend is and how to never
take that for granted. I will now go to the ends of the earth before losing
someone important.
I now understand that time is just a limit we humans place
upon ourselves and although we should never take any second for granted, we
shouldn’t be frustrated or rush those things that may need to take a little
more time.
I have learned that family does not mean blood or family trees.
I have cousins and friends, who are more like sisters, mentors who have become
like uncles and parents who have become more like soul mates.
Last but not least I have learned what Gods eternal love
feels like and how it can change a person. Growing up I thought there were more
limits, if I was “sinful” or hanging out with others who “were a bad influence”
he would slowly creep out of my life until I couldn’t feel him anymore. It has
become the exact opposite. As I have embraced those who don’t live the way most
deem appropriate, and ceased with judging others his love has radiated
throughout my life. I am never alone on a bad night when my body is twisting
and my head throbbing. I am not alone when I’m trying to push through the pain
when I am with others and hiding how badly I really hurt. I am not alone when
my mind is gone and I can’t remember simple things like the name of my dog or
how to open a door. I am not alone when I find myself somewhere and I’m not
sure where I’m at or how I got there.
Some may say why do bad things happen to good people. I’ve
decided God doesn’t have control of the dice like we think he does. Sure, if he
wanted he could change the outcome but then he’d be interfering with the laws
of nature and free will. And as a God of science he just can’t do that, unless absolutely
necessary. However he will hold our hands give us the tools and send us the
people needed to get through those times.
My illness is a blessing, a nascence sure, but a blessing
none the less. If I were to say anything
else I’d be kidding myself.
Meditation is one of the best methods for healing.
Growing up if you would have told me I would be an advocate
for yoga and meditation I would have laughed in your face. Two of my best
friends used to love to meditate we’d go to a park by my friends house that had
a beautiful little pond. They would sit with their legs crossed close their
eyes and drift into their inner la la lands. First I’d fidget then I’d start
singing in my head and within min I was up and throwing rocks in the pond. Frankly I thought it was silly, but the joke
was on me.
Meditation is not for the “wo wo” tree huggin flower
children of the world.
When you think of meditation if all that comes into your
mind is a bunch of Buddhist monks on top of a mountain your not alone. However
there are a many different types of meditation and “mindfulness” exercises as
there are songs on your playlist. Here are a few of my favorites but I recommend
you google and find the exercises that best fit your personality.
First thing is first. Always set an alarm if you are going
to meditate. This way you can let yourself go and not have to keep interrupting
yourself to check the time.
MUSIC
My absolute favorite type of meditation/mindfullness is “centering” myself
through music. Don’t be scared if the phrase “finding your center” basically it
just means find that spot in your mind where your body and soul are completely at
rest and it’s like a cool breeze is running through your soul.
I turn the music up as loud and just rest myself into the
music. Whether you just sit and embrace the song or let yourself dance as long
as you are completely lost in the music and thinking of nothing else then guess
what? You’re meditating.
If you find your mind wandering then focus on the melody or
a particular instrument etc. Then just let yourself melt.
Empty Thoughts and “Post
it’s”
My second favorite meditation is find a comfy place, someplace
quiet, set your alarm and close your eyes. Relax
This is the hard part. Think of nothing.
Sounds impossible? Yeah I know. But every time a thought
comes into your head imagine yourself writing that thought on a post it or piece
of paper and then imagine putting it aside or the wind picking up the paper and
have it dance away in the wind.
I know it sounds silly but I put the things I need to
remember on post it’s and my negative thoughts on paper and pretend they blow
away.
The more you do it the longer you will go without any
thoughts. Then when your alarm rings you will be AMAZED at how wonderful and
refreshed you will feel.
I recommend doing this before an important meeting or test
if you can. You’ll perform so much better.
Ground Control to
Major Tom (best way to manage pain)
Get comfy, set alarm, all that. The important part of this
meditation is to relax and let your imagination take over. Whatever you imagine
it’s right, each time you do it let yourself imagine more and more details. The
first couple times you do this exercise you may want someone to read it to you.
Let’s begin.
Focus on specific parts of your body starting at your head,
fingers or toes. Then focus on relaxing each part of the body. First your toes,
then your feet, then your ankles then your calves etc. (if you are reading this
to someone then specifically go through every part of the body)
If you don’t feel completely relaxed yet then imagine sand
or water being poured into your body starting at your head or feet and is it
fills up your body you feel the weight comfortably weighing you down.
When your relaxed imagine a staircase leading to a basement.
Whatever you imagine, concrete stairs, wooden, brass whatever.
This staircase is leading to the part of your mind that
controls every part of your body.
Imagine yourself walking down those stairs and with each
step count down. 10, 9, 8…1
In front of you is a large door. Turn the handle and walk
inside. This room is your bodies control room. Imagine all the levers, dials,
and buttons. Each switch, lever and dial controls a different part of your
body.
Where do you feel pain? Go to the dial, switch or button
that controls that part of your body. Turn the lever you are now in control of
that pain. Turn it down. Is your heart bothering you? Slow it down.
Let yourself spend time in your control room fiddle with
your dials you are in control of your body.
Wait a few min.
When you’re done, go back to your door open it up and close
it behind you. Now lock it. Only you are in charge of your body. Now walk back
up the steps. Count every step and say to yourself “When I wake up I will be
faster better stronger.”
10 when I wake I will
be faster better stronger. 9 when I wake I will be faster better stronger….3 I am
faster better stronger…1 I am faster better stronger.
Take a deep breath and open your eyes.
I have many more exercises especially ones that help center
around pain. I will post them later.
Long story short, this is how I’ve stayed sane, healthy, and
am coping with copious amounts of pain.
1.First I’ve memorized this poem/saying and say it to myself a
hundred times a day:
“God grant me the serenity to accept the thing I cannot
change, the courage to change the things I can and the wisdom to know the
difference.”
2. I stretch every single day, no matter what. Whether you feel like crap, or your body is
going to break; or you have twenty places to be at one time. First things first. You
stop, and get your stretch on. Stretching for people with Dysautonomia, MS, Parkinson’s,
or people who just get leg cramps is extremely important. I can tell a huge
difference between my days I stretch and those I don’t. I stretch consistently throughout
the day. In the morning when I first wake up I go through each position. Then throughout
the day when I get a moment to myself I do quick little stretches as much as
possible. My main stretches all come
from this fabulous book called (bellow)
Stretching and Toning by Melissa Cosby
I love it because it’s spiral so it lays flat. It has instructions
for several fitness levels so if my legs just won’t move like they should one
day I can revert back to beginners and on my good days I can go to Advanced. I’m
forgetful and ADD so I love that it goes into detail for each stretch but then
in the back there’s a page that sums them all up. This way you can go back and
make sure you haven’t forgotten how to do the stretches correctly and make sure
you haven’t formed bad habits.
3.Exercise daily, no matter what. I see those eyes rolling. I know this is a hard one but here’s the thing. Even people with the most limited movements can find an exercise
for them. For years I was told not to exercise because I would pass out. Then I
was told to do it for three min at a time. And here’s what I’ve found. There’s
this hilarious old lady that comes on PBS every morning at 9:00. She sits in
her chair and exercises. Sure you feel dumber then a playboy playmate at a Mensa
conference but it does the trick. Also I have this awesome machine. It’s like a
bike but you can stay on your couch and pedal, and then you can lift it up on
your table and work on your arms. It’s fantastic.
I found mine at Walmart.com
4. I’m now a yogi. I do Yin Yoga almost daily. I should do it
every day several times a day, but I don’t.
Don’t give me that look! I know it may sound crazy but if you really
give into it and your body can heal itself between bad days. It’s amazing! Plus
for the hours right after each session you’ll be standing up straighter then
the Eiffel tower! Here are my favorite videos:
Yes I know they seem stoned...but doesn't that make it more fun?!
5. Learn to meditate. There are hundreds of methods out there,
find one that’s right for you. I have a few favorites look HERE
6. On your bad days get out of bed! Even if you can’t move,
your joints are killing you, and each vertebra of your spine screams out in a
pop as you move upward. You got to continue to move your location. For
instance, in the morning, move from your bed, to the couch. If you need to keep
your favorite pillow and blanket, but just make sure you get out of bed. Then a
few hours later move from the upstairs tv room, to the family room. It’s
amazing how much better you’ll feel on those bad days if you push yourself to
change your surroundings even if it is just from one room to another.
7. Try to get your mind off your pain while excersizing and
getting ready. The reason why it is so hard to be motivated in the morning is
you are dreading that pain. So instead of watching your favorite tv show while
on your butt at night. TVo it or watch it on hulu as you are getting ready for
the day and doing your stretches. I always have whatever show I love on while I
stretch and I watch my horrible guilty pleasure, TMZ (you can get the episodes
on their website) while I do my hair/makeup/and get dressed. It distracts me
from how much it hurts to do those tasks.
8. Find your outlet. You have to find things you can do every
day besides watching tv, no matter how you are feeling. Make sure these are
things you love to do and make you happy. Here are some of mine:
My music. It’s amazing how much music can uplift you and get
you motivated. On days I don’t think I can do my stretches or go on a walk my
music usually does the trick to at least get me motivated to walk to the
mailbox and back!
My “Happy journal.” I keep a journal of things that makes me
happy. It’s an 8x8 scrapbook of random things that make me smile. Scrap-booking and just looking at my scrapbooks
can put me in a great place. If you don’t have the money or movement in your
hands to scrapbook an easier and cheaper way to go is Costco’s online
photo books. There are other websites that do great scrapbook pages but Costco’s
photo books and scrap-booking pages come out to costing less than if you were to
print out each of the pictures individually.
Then I keep a normal everyday journal but I do more doodling
then writing.
I send postcards to
my friends. Letter writing is such an important lost art I think. So I write
letters and postcards. It’s also a good practice to keep you grateful. Writing thank
you notes and love notes to your friends and family really helps you focus on
why you should keep fighting through the pain.
On my good days I do
photography so that on my bad days I can sit in bed or on the couch and have
fun photoshopping them.
I’m not a big fan of facebook, but I’m obsessed with this
website called polyvore.com. It’s so fun! Basically you make little fashion
sets. Sounds stupid I know but it’s my guilty pleasure.
Some other Ideas are reading, blogging, painting, crochet or
needle point, puzzles, brainteasers, soduku, playing card/dice/domino games
with family or friends, cook, etc.
9. Get out and volunteer. As of right now I can’t work. My days
are too sporadic and unpredictable so there’s no way I can hold a steady job.
So I volunteer at a Women’s shelter a couple days a week for a few hours, and
thankfully they are flexible when I have bad days. It’s perfect because for the
most part I sit, but I’m still challenged to get up and help out the girls.
Some days I’m on my feet the whole time. It’s hard but it’s good to push myself.
Everyone there knows of my limits so if I say “that’s too much” it’s no
problem. And since it’s volunteer work they are just grateful I’m there no
matter what. I’m sure retirement homes, shelters, schools, and programs for
persons with disabilities would be more than happy to have you.
10. If you know you can find a job that fits with your body and
abilities go for it.Look for jobs you normally wouldn't, telephone operator, florist, receptionist. Even if you are worried that they will be put off by your
illness. Even if they are at least you tried, but I think you would be surprised
by how understanding some employers can be.
11. My next piece of advice may turn you off but it’s really
important you take it. Get yourself a councilor/therapist/shrink! I will go into the importance of one in a
later post, but for now look for someone
who specializes in chronic illness or disease. My therapist isn’t there just to
listen to my problems, but teaches me ways and gives ideas to improve on my quality of
life. It is also very, very important that you have someone unbiased who you
can really confide in when you have an illness, because they understand all 360
degrees of what it’s like to have an illness, be a caregiver to someone who has
an illness and be a provider or physician to someone with an illness. It may take trying out a couple of specialists
to find one who fits your personality and what you are looking for but once you
find it they can really be a great asset in your life.
If you can’t tell, I love my therapist She’s fun and sassy
and reminds me of a high school guidance counselor. Her purpose is to make me
realize if my health isn’t going to change then I have to. She gives me ideas
on how to improve my life. I’ll let you in on a secret; most of the ideas on
this list were hers.
Which leads to my next word of advice...
12. Read this book:
I have read my share of self-help books, to spiritual books,
trying to find the best way to edify myself. Other than the Holy Scriptures I
can one hundred percent say, for me this is the best book for self-edification.
It’s geared for people with high anxiety, but it works with
people with illness too. For instance it teaches you to take those bad thoughts
you have about yourself and turn them from a feeling into an object that you
can analyze. In doing this you realize what a silly thought, why am I thinking
that. And then you can take your forefinger and thumb and flick them away. I
now view my pain this way. I view it as an object instead of a feeling and
though it’s not so easy to flick it away, pain doesn’t have the power over me
that it used to.
It also teaches you meditation. Something I have been
practicing for a while and found extremely important in my quality of life. There
are some odd meditation exercises in here but just do the ones you find are
good for you. I will also do a post on
my favorite forms of meditation, so look for that.
I’ll be honest It’s a heavy read, and you’ll want to fish
through it fast. The first five or so chapters are okay to scan through just as
long as you feel like you are getting a grasp of what he’s saying because he is
laying a foundation, but it’s really important to take your time on the rest of
the book.
Don’t be afraid to redesign the little assignments he gives
you to fit your situation.
13. Count and organize your spoons. AKA Energy I will go in a
later post, but basically don’t over do it. If you feel good one day don’t
freak out and run a marathon. Otherwise you’ll crash the rest of the week. Plan
out your week and save energy for tomorrow.
14. Last but not least. Confide in a friend. Don’t be ashamed to
ask for help.
I live with my parents and they know what I go through because
they see it firsthand every day. However my brother, his family and my extended
family not to mention my friends in the past were kept in the dark.
It’s important to open up to them so they know the details
of what you are going through. I hadn't really told my grandparents exactly how
bad things had gotten, and they got a rude awakening when I was left needing
their assistance to help me to the bathroom. These two were in their late
seventies and had to basically carry me to the bathroom because I couldn't move
the right side of my body. I’ll spare
you the rest of the details but it’s one of my more awful memories. If I had
been honest with them and had a conversation on how they could help me I don’t
think it would have really traumatized me as much.
I usually don’t talk about my illness with my friends much either,
it just doesn't come up. I won’t let it. Even if I’m on the couch slumped over
in pain we talk about anything else.
However, I've learned I need to give up my pride every now
and then and talk about it. Usually we laugh about the silly things that happen
because I can’t make it to the bathroom in time or fall over because my legs
give out or how I threw up on my dad in the Mexican restaurant parking lot. But
we laugh about it because that’s how we have decided to view it. Not as sad
events, but we force ourselves to see the humor in it. So instead of, “oh (frown) It’s so sad you
peed your pants, and then your dog peed on you.” (Tear.) It’s “Oh my gosh! That is so freaking funny I’m going to pee my
pants right now thinking about it!” (Hyperventilating)
After a long hiatus I’m back. The main reason why I stopped
writing was, well, when I originally started this blog I wanted to write because
all the other blogs on Dysautonomia were so depressing. Each entry from all my favorite blogettes were
tear jerkers. So I wanted mine to be more uplifting and positive.
After my wonderful neurologist left my area and went to
Columbia University I went through a deep depression because my new doctor,
well to put it nicely he’s like an old crow trying to keep all his eggs warm he
hasn't realized they've already hatched.
I wasn't happy and I sure as hell wasn't in a place where I
could blog about what was going on in my life without it coming across as slightly
“Hope is emo.”
( If you don’t get the reference youtube it.) Priceless. Oh how I miss 2007.
I digress, after a long journey, months of introspection
with help of yoga, a reality check, and a kick ass therapist. I’m back with what I've learned.
When nothing is going to change, no miracle is going to take
place you can’t just say you accept it; you must mean it. I used to think I did
mean it, but I didn't. I was still waiting for a miracle drug or my symptoms to
vanish. And after five years they didn't so I had to figure something out.
I’m not going to say I figured it all out, but hopefully the
following posts of what I've learned will somehow help you in your life too!
My grandfather had heart surgery this week. While waiting in
the waiting room we ran into some friends from my childhood. It was so strange, but totally meant to be.
They were there because a mysterious ailment made their mothers heart stop. She was rushed to open heart surgery and then rushed to
the best hospital in the state for more surgeries. After talking with my friend
for a little while I decided I should write a
few things to help others experiencing the same situation.
Be as patient as you possibly can.
Don’t be
afraid of prayer, whether or not you believe in God, circumstances like this a
prayer could never hurt.
Always make sure while talking to the doctors
there are at least two of you. One person cannot pick up everything that is
said. Bring a pen and pencil and a buddy to all doctor consultations about your
loved one.
Obey the visitor’s rules. It may get really
frustrating at times because you want to see your loved one at certain times or
you don’t want to leave them. But too many people in the room or staying past curfew
or going in when you have a cold could seriously complicate the progression of
your loved ones recovery.
It’s common for people who have had big
surgeries like brain surgery or open heart surgery to go through a sort of hard
core depression afterward. Help them realize this is normal, bring the light
back into their life and be a good support for them to lean on during this hard
time, but don't get frustrated by their behavior.
Their life may never be the same, tell them it
shouldn't be. My biggest obstacle and sometimes still is, is remembering how
much I used to be able to do and how little I can do now. It’s the most
frustrating part of the journey. I have realized I only have so much energy
every week and if I over do it one day I’m out the rest of the week. This is
important for you and your loved one to realize. They will want to get back to
normal, but it may take time, for me it has taken years and I’m still not even
close to what I used to be. So this is my new normal. I’ve accepted it. But it
took a lot of time a lot of tears and a few broken plates to realize this.
Recovery may take longer than expected. Your timeline
and the body’s timeline can be two totally different things. Push yourself but
don’t get frustrated if you or your loved one hasn’t accomplished what you
think they should by your standards. Your doctor will step in and let you know
if something is wrong. Otherwise enjoy the journey and don’t get mad at
yourself. Anger doesn’t help the bodies progression
Their personality may totally change. It is not
uncommon when something like this happens your personality takes a huge
remodeling. I am the first to admit who I am now, how I handle situations, and
my views on life are totally different than they were before I first got sick.
When you have a loved one who is going through this change it may be incredibly
confusing and frustrating because they are not who you fell in love with, or
grew up with, or love. But guess what, they are. We all change throughout our life’s
but events like this just make the change quicken. I’m reminded a rock slide
that happened in Zion National forest years ago. Before the slide it was well
established in the scientific community that rock formations and canyons take
hundreds of years to be made. But after this unique rockslide the entire areas
look changed. The slide made unique formations broke an arch into a hodo, and a
mountainous area into a canyon. All these
things that were previously thought to take years to happen took literally a
few min. Your loved ones personality may be this drastic, but under everything,
they are the same person, so embrace the new them. If they have traits that are
now considered dangerous behaviors get them help, otherwise try to accept the
new them.
Let them know you are there but give them space.
When your life changes like this, a new self-awareness occurs. Your loved one
may need that alone time in the hospital and during recovery to help them find
themselves again. Don’t take their dismissals personally. Their life has
changed, let them find stable ground again.
I can control my own happiness. I may not be able to control
my illness, but I can control how I let the pain that travels through my body
controls me.
On days I feel hopeless, I’m not afraid to cry out in
prayer; and when I calm down and refuse to let my body be in control I feel at
peace. Something I know that comes from God.
Just remember don’t be the man in the story who falls off
his boat and is being carried down the violent river. He yells out to God to help
save him. Right after he cries out a log comes flowing past him and he is able
to get up on it to safety and he says. “Oh never mind God, I found a log to
save me.”
You may think God gave you your trials because he’s
punishing you or testing you. I honestly think God had nothing to do with giving me my illness, genetics and sience did. However God hasn't cured my illness to save
me from myself. I needed to learn patience; I needed to learn to lean on Him
and my family and friends. I was too independent before. I was going to save
the world on my own and didn’t need anyone’s help.
How foolish.
I was missing so much. This illness has taught me so much, strengthened
so many relationships, and showed me who my real friends are. It’s taught me
what is really important and not to stress over stupid little things.
Believe it or not, I dare say my life is better for it.
I wasn’t given this illness because I needed to be punished,
but rather to be saved from myself. I needed to realize what was really important,
and what the real purpose of life is.
Not to mention, overcoming pain is much more rewarding then
being patted on the back for a great presentation at work, an A in the hardest
class at school, or even a raise.
I've missed winter. As I listen to Pistol Annies new album, and I listen to the wind crashing into our tree's and Christmas lights I can't help but smile. This next week is this year's dreaded hospital week. Where I'll go and be analyzed for 168+ hours straight. But at this point I don't care, I may be off my meds which makes typing this incredibly painful, but it's worth every letter to say: Life is so beautiful. It's perfect, even with Naomi.
This year is the first year since 2008 that I will NOT be in the hospital for Thanksgivin'!
I know, crazy cakes!
For some reason every year they have always managed to let destiny plan my stays (for overnight EEG and other testing) that covers the week of Thanksgiving.
Last year I spent the entire month deteriorating at the Mayo Clinic, however this year I get to be closer to home eatin turkey with the grandparents!
Sadly I have not escaped this years tests all together though. In December I'll be stayin a week or so at my states amazing Hospital that is one of the top notch research hospitals in the country! The heads of the Neuro and Cardio, Gyno, and Gastro departments will all be collaborating Mayo style to get in my brain and figure out if there's anyway we can slow down this madness.
I'm excited for the hope this brings me and my wonderful parental caregivers. They surely do need a break too so having someone else coming to my rescue for a week will be a huge burden lifted.
BAD SIDE....I have to go off ALL my meds. They want to see my body as clean as possible to see exactly what it does on it's own. So far I've only gone off three of my million...okay eight...medications and already I'm a limpy wiggly child. I don't know if I'm going to survive a few more weeks of detox. I am really happy I get this opportunity though. I'm always so scared that my meds may be causing extra symptoms so now we'll really get to see. The pure me.
A couple of Sundays ago i pushed myself to go to church even though i was feelin all shiatza. I ended up blacking out and needed to be escorted, practically dragged out by my father. Now this isn't all that uncommon, but usually i sit in the back so when my limbs get wiggly or limp i can just fall over and no one really notices.
Not this time.
I was so bombarded by Facebook emails and texts that my blood boiled. then days later people were asking me "How are you feeling?" The most obnoxious question in the WORLD!!!!
I just told them that it wasn't a big deal, but people always seem to think that i'm being under or over dramatic about it by saying that. They don't get that an "event" for me is the equivalent of a headache for them. It happens all the time, then I get over it and move on with the rest of the day and by the time my head hits the pillow for beddy-by i've forgotten all abouts it.
I just wish people would just realize it's life for me, it's not a big deal, and asking me "how are you feeling." "Are you feeling better." "I've been praying for you." is sweet. but it gets very old very fast.
It doesn't comfort me, it just reminds me, "oh, that's right my body sucks compared to everyone elses. that smells." Otherwise it wouldn't even phase me half as much as it does now.
Part of my new life is I have to intake 10 g of salt a day. Yes...10 grams!! The average person has about 3-4.5 g a day. I also get the pleasure of drinking 2.5 liters of water a day. I'm supposed to drink Gatorade but i'd almost rather drink gator pee...I said almost.
I pour it on my food, in my drinks, and guzzle it plain because the salt tablets that have been prescribed to me cause instant up chuck.
You ever need to get poison out? Just throw one of those monsters down ya and out it'll come!
Still with all the guzzling and chugging back i'm not getting even close to the suggested amount.
My dad's threatening to install a salt lick in the back yard for me.
Calling all idiots: Maturity is purely biased on opinion. A serious life is nothing but a stubborn one. An elitist prude is just as much of an uncultured swine as a redneck white trash wife beater. And my generalized judgmental remarks are just as sophisticated as a four year olds sense of self.
My maturity peaked when I was twelve; it’s just been down hill since then. But what really decides maturity? Is it the way we communicate with one another, is it the way we react to society’s unspoken rules and morals? Is it our experience with life’s obstacles and trials?
What about professionalism? From my observations we gauge ones professional behavior on how serious, devout and unattached the worker is.
This certain behavior is what I’ve generally experienced with doctors. I truly believe they mean well, but the healthcare system has become a physical wellness version of a fast food chain.
My diagnosis along with thousands of others have been delayed, overly scrutinized; yet over looked because of the manner doctors and health care professionals have approach the situation.
My experience however at the Mayo Clinic pretty much shattered my generalized belief of what the health care system is capable of. They prove that professionalism does not require a doctor to become aloof and unattached to be able to fully provide the care needed for their patient.
Between battles with insurance and doctors, it took me three and a half years to get to the Mayo Clinic. I was told there was a possibility of getting help there but not to get my hopes up. From the moment we checked in the organized offices, patient/customer service and bedside manner blew me away. For the first time in years I felt like my voice was actually heard. They listened to every detail; every concern then they attacked the problem, not the patient.
I had a team of doctors from different specialties gather together with and without me to talk specifically about my case.
In two weeks I had more tests knocked out then I had within the last two years. Each test examined by each doctor, evaluated then the results were immediately passed down to me. It’s been believed that I have POTS , although my disease has a lot of similar symptoms it’s actually caused by my heart rate and blood pressure having minds of their own, along with other random glitches in my system.
My old neurologist told me flat out that it’s impossible that I’m still fainting because I have a pacemaker, yet we discovered that is far from true. My heart rate can be high because of my pacemaker and in normal range yet my blood pressure can drop to freakishly low levels.
Never give up and never surrender your patient rights. I had to push my local doctors to give me a second chance and allowing me to go to the clinic. The medicine and therapy regimen my doctors have put me on has completely turned my life around. I still have my bad days; I still sometimes have to push myself one moment at a time. My bones still freeze muscles still spasm but my energy is up along with my hope.
You don’t have to be a hard ass in order to be a good doctor. I think it’s funny that many judge Doctors abilities about his knowledge about medicine. But what good is that knowledge if you’re too stubborn and cocky to see the whole picture or judge the patient too quickly. Professionalism is not run by maturity, but by common sense and the ability to see with your eyes and not your ego.
The fantastic fortitude of a positive attitude still astounds me. I absolutely love it. The mind is so intensely powerful that it’s no surprise that we know really nothing of it and never will. Many believe that those with a sudden onset of a chronic illness had a trigger aka, trauma in their life which exasperated what was silently waiting to take over.
I completely agree. I’m certain I was born with this illness; the first signs were shown when I was in fourth grade, continued very silently through my adolescence and only really showed through exercise or long days sitting in the classroom. The first hit that took place that let those close to me know something was wrong was when I was twelve after several stressors. It was slight but very present. It didn’t start getting annoying and disruptive until I was a jr in high school, and didn’t show it’s dragon like face until after I graduated and I had two sudden traumas that occurred one after another. Not only my mind and mental state was in shock, my body went through a shock and caused the genetic disease waiting inside me to crawl out and burn throughout my body. Studies back me up on this state of thought, thousands of patients will attest that they too had a trauma that brought it out.
So if a sudden trauma could cause a fault in your system causing a chronic illness to peek it only makes sense that meditation, stress reduction and positive attitude will help. maybe not cure, but calm the disease. All the more reasons to do what you love, cut out the people and subjects that are toxic from your life, and live hard while parting like a rockstar.
Right now i'm visiting my brother, him and my dad are getting ready to lay some gravel in the front yard. My brother has been complaining about his back because he messed it up snowboarding a couple of years ago. I've found myself wanting to go out and help, but i know the movement of bending over to sweep up the dirt and then up to place it in the wheelbarrow would cause my P.O.T.s to act up sending me face down in the dirt. And although the idea of a mud bath sounds fun right now i don't think it's for the best.
I would have never thought I'd miss manual labor as much as i do. I've always enjoyed mowing the law and still do it every now and then but it causes a bad reaction and i can surely expect an event that night.
I grew up in a fairly small town, pewney compared to the major cities, my best friends all had ranches and corrals. I'd go out and help with gathering up the hay, bringing in the horses, fix fences, everything you'd see in a good cowboy movie.
There's just something inspiring about hard work. I love it. I love that feeling of completing a task and that pride sweeping over you. It bugs me that the only thing i make with my hands now days is girly woosie needle point and birdhouses.
It's my goal to get back to doing as much as I can, I walk a little more each day, and push myself in the small things more and more to help my endurance grow. It'll get there. I've been teaching myself how to endure the pain in my heart. Every time it comes on i just take a deep breath and i guess, meditate, almost go into myself and tell my brain i can take it, it's not as bad as it seems and with my mind try to psyche myself out into thinking I'm fine.
At this point it only works like 30% of the time, but I'm expecting it to get better.
i love this picture it reminds me of when i was a little girl and i would sit on the shore of a lake we used to visit in my big sweaters and almost bigger bows.
When you’re struck with a chronic illness it’s not uncommon to feel a great sense of loneliness. It’s there in that great big package your body gives you along with the aches, nausea and confusing fatigue. It comes even when your family and friends surround you and often have friends around. It’s just something you have to deal with.
I’ve felt loneliness before I got sick, everyone does at some point in their life. However the years coming up to it I was too busy to get lonely I was too many quests and had too many adventures to stop and think.
But as of late my thinking has been too much, the late nights when I’m still awake and it seems the rest of the world is sleeping it’s hard not to feel lonely.
I ask myself why, because I’ve got a great family and many friends and lots of support. But I think the reason I have the loneliness is because there’s no one else who knows exactly what it feels like to go through this. It’s not a “oh sad, lets feel sorry for her.” sort of thing, it’s just matter of fact. No one does, and quite honestly I thank God. Ours is an illness that no one sees, and it’s not like cancer where people have more awareness and understanding. Plus lets face it. Dysautonomia is just weird. Especially when you’re a paradoxical mess like I am.
But I’ve decided I’m thankful for these lonely spouts.
They’ve allowed me to really understand myself more and gain the most out of my experience. I’ve always had a hold of who I am. Now days fitting in is the exact opposite of what I want to do, and I love myself for it. My very conceited cousin was telling me how hot he was the other day and I thought to myself how odd our family was because we’re all so confident. But I realize the reason why we are is that we’ve been faced with a lot of challenges. Not necessarily more then the next family but for some reason a lot of us have come out with an extreme sense of self.
Now don’t get me wrong, my cousin’s a little twit but I’m proud at the same time that even though he’s in the scary high school stage he can hold his own.
I’ve embraced the lonely and turned it into a time of meditation, further understanding of myself, my progression and trying to psyche my body into healing itself.
I’m not going to lie, my spiritual ambitions are not what they used to be. I think it comes from long absences from church because of my bad days, but I think I’ve also realized how amazing it is that I can still develop testimony by studding, reflecting, and searching for answers at home by myself. Don’t get me wrong the church community is greatly needed in ones development because we learn and lean on each other. However I’m not entirely disappointed in my self progression with studding on my own.
I guess it’s one of those “if no one was watching what would you be doing?” sort of things. I’m proud of what that answer is.
But one of the most important things I’ve learned within the last weeks, it’s okay to cry. Not for an hour, not for days at a time, but sometimes it’s okay to let loose. I’ve never been one to cry over emotions, especially self pity. But I broke down the other day to my best friends and I didn’t even know why, it was over something extremely stupid.
But it was because I just finally broke. Yeah, it sucks that I’m not able to do the things I was able to do, and that the doctors go back and forth and I miss working, I miss playing soccer, and having as much energy as I used to when playing with my babies. And I feel a guilt that I’m not there for my friends and family like I used to be.
So I cry. Just for a min. Then I remind myself that I am one strong woman. Freakishly strong in fact, and that I’m going to get through this, because when you have trials God helps give you the strength to handle it. I will find a way to defy all the odds, and day by day I will get better. Even if I don’t get better physically I will get better mentally. And I remind myself I’m not ordinary, I’ve never felt ordinary. And unordinary people do extraordinary things.
Ms. Nomi (what I call my Dysautonomia) has been visiting me a lot lately. The doctors have been tapered me off my beta-blockers because I’m paradoxical and they want to experiment with different meds before I hit the Mayo Clinic. So I’ve taken up some hobbies since I can’t do the usual fighting crime, turning trix and acting as britney spears body double.
I’ve become quite the little crafter and for my fellow P.O.T heads I’ll tell ya, get your craft on man!
My bestie and I hit JoAnn’s the other day for some sales. We looked online for coupons and found our share of deals. Take time before you go out and clip some coupons, we saved about twenty bucks. I found some adorable bird houses that just needed to be sanded and painted they started from 1.00 and went up to about 25.00.
I also got some things to start needle pointing. There’s something charming about dirty sayings in needle work.
It’s been such good therapy for my fingers. My hands aren’t what they used to be. I don’t know why but just typing is hard some days, and forget about piano playing. But I swear the needle work, knitting, and pushing myself to play the guitar and piano has really helped me.
I also make sure I walk at least 10,000 steps per-day. I try to up it each week, but of course on my bad weeks during that gifted ‘special’ time each month I’m lucky to get half that.
My heart rate is more messed up then Farrah Fawcett on letterman. I went running the other day and of course tracked my heart rate closely. It stayed between 65bpm and 120bpm. The faster I ran the slower it got. I know, once again, paradoxical. So I’ve discovered that if I just walk on a steady incline it stays at the highest beats per min. Who would of thought. The good part of having such a messed up heart rate is on my good days I can run forever. It’s exciting and disgustingly fun! I bet I could do the Iron Man…that is as long as I had floaties on during the swimming portion in case lost movement in my right side. And I would need to find a way to bike without actually balancing on a thin piece of metal in case I passed out and fell off. And I probably shouldn’t run because after drowning from swimming and passing out from biking I bet I would look like a heroin addict on the side of the road. (Nomi survivors are probably the only ones who would really understand that reference.)
Anyways, I know it’s hard my friends, but keep on keeping on, you’re never given anything you can’t handle, and if you view your life as just a pathetic joke, it makes it a lot more entertaining.
When you are going through the hell of figuring out what the heck is happening to your body it’s a steady mission; a quest per say of which it is easy to find optimism by looking at it as an adventure. Of course it’s a crappy adventure but none the less you can trick yourself into thinking that with every new test, every new diagnosis you are just educating yourself. Educating on how the medical profession works, education on peoples body language (that may sound weird but I can now read doctors like an open book) and education in yourself.
I now am much more aware of chinks in my armor. I’m still fabulous but now that I’m more aware of myself it’s easier to admit when I’m wrong...which of course is rare, and when I should change something.
When all this started I was little miss independent. I hated getting help from others, because help was for the weak. I worked like crazy, studied like crazy, exercised like crazy, and partied crazy (well at least for my cities standards.) I only dated for the fun of it and only had one really big relationship out of high school that had absolutely no strings attached. It was much more fun moving from man to man, date to date, party to party, group of friends to group of friends. The only constant in my life was my family and an old friend Jess that came up to school with me from my home town.
Sickness humbles you; you have to admit you’re just as vulnerable as the Roman Empire. I had my ten year plan; I wouldn’t have ever seen myself here.
When you go through the hell of diagnosis you go through all the stages of grief over and over again every time the doctors change their mind or get new results from different tests.
Then you have other outside forces pulling you, like friends and families. I lost a lot of friends when I got sick. There was even one that complained that I wasn’t paying enough attention to her and her problems. Others just don’t keep up because they don’t understand what’s going on or they’re were just bummed I turned from being a crazy fun loving gal to one on a couch most of days of the week completely passed out. I’ve even had a little drama with my extended family because of it. they simply don’t understand the disease. At first this bugged me but now I’m glad. The friends I have now are few, but really very loyal. I take the relationships with the sexy man friends more seriously and I’m still a work in progress but them taking care of me doesn’t make me uncomfortable anymore. I know my family will come around, my bond with my mother is stronger then the wall of China, and the respect and love my father shows me would make any daughters heart melt.
Then when you FINALLY get the actual final diagnosis and everything is pretty much sign, sealed, and engraved you have to go through the steps of grieving all over again.
I’ve finally found a way to deal with this.
I plea insanity.
Simple as that. I just don’t care anymore, I’m now a complete ditz, my thoughts are never completely formed and the flap between my brain and mouth that filters what I say, doesn’t really exist. At least I won’t go to hell now for lying.
So I plead insanity, I dance in the streets, bounce in puddles, have long conversations with strangers, wear what I want to wear no matter how insane it looks, cry for no reason, take bigger risks, and many other fun things I won’t say just incase it will incriminate me later.
I am grateful for my disease.
