I also have a cyst in my brain stem. We’re not quite sure
what or if it's messing up anything but I’m sure it up to no good. I’m not really concerned about it. A lot of
people have cysts in all over their brains. Right now they are more worried
about the excess fluid.
Also a recent test has shown that my neurons are doing wacky
things sending singles to one another in my brain stem. During the test I blacked out and almost
fainted, and my body did it’s beautiful contortions. It’s not really new, news. We’ve known for
years my body doesn't make enough of the correct chemicals to make my neurons
communicate correctly hence the Parkinson like drugs. However its cool I can point to a particular
spot and say I’m broken there.
Also I got these sweet sexy glasses that are oh so ugly. A
six year old told me I should try to wear them as little as possible. I got
them for when my upbeat nystagmus is acting up or I have one of my fun
migraines. I recommend them highly! They work so well I don’t care what I look
like! They are these special pink lenses. So bizarre.
What is an upbeat nystagmus you ask? I’ll find ya a good video.
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.
