PERSONAL POST: This is a taboo subject but I’m going to talk about it because health insurance is and extremely important topic. As most of you know I have a neurogenetic disease. I am on about eight medications a day, a monthly shot, and Botox every three months for horrid migraines. My monthly shot is lifesaving, point blank. Without it I am bedridden. Without three of daily meds it’s the same, unproductive, bedridden, end your own life kind of pain, seizures daily. I’m not being over dramatic, it is reality and was a reality from 2008-2012 you can ask any of my friends from that time.
My monthly shot is over $1000 a month w/out insurance, my other three lifesaving meds are about $300 and $500 each without insurance. Then you can add on mandatory doctor visits to check on my pacemaker, and neuro stuff.
Since I am a full time student (13 credits this semester 16 next) and I intern and volunteer to increase my training; I personally can’t work with my illness on top of that. Even if I quit interning and volunteering I would only be replacing that with about 13-15 hours of work a week. Not enough to make insurance and the price of Obama care didn’t make it worth it, I would literally be working for insurance with change left over. (yes I talked with gov. advisors they told me not to work that it wasn’t worth it) If you are thinking that doesn’t make sense remember I’m single, and have no children. We don’t get the same perks you married parents do. They make more money off of us to spare you.
Yes, I could cut time at school, but I would lose my full ride scholarship. That kind of defeats the purpose of saving money. Instead I opted for being labeled a disabled dependent and be on my parent’s insurance. Now all together my meds cost about 200 bucks a month because my rock awesome insurance.
Today I got a call that even though we called the insurance twice in the last six months to make sure I was still on track and covered, that they ended my insurance coverage at the end of June. Just like that, without any warning… even though my dad paid for the benefits package that covered me all year. Thankfully, because of my dad’s position and our now ten-year history of dealing with insurance we know how to deal with this. We know chances are I will get back on insurance and everything will be okay even though it isn’t still certain. However, millions of American’s are not this lucky, I’m not saying universal healthcare is the answer either because my friends in other countries with UH aren’t allowed the lifesaving medications either because their version of the FDA does not allow them. It’s how they get around paying for chronic patients. What I am saying is our system is messed up, it’s in disarray and something needs to change. For instance, the company that makes the $1000 monthly shot I take has made a deal with select med, they only get charged $100 for it and I get charged $10. Why? How can they do this? Why does the cost of healthcare change depending on the people you know?
Here are some vidoes on Ataxia I have cerebellum ataxia type 2.
Us folk with autonomic dysfunction sometimes have a dirty
little secret. I’ve mentioned it before but after my ataxia and dysautonomia
buds have been asking more questions about it I’ve decided to talk about it.
As we lose control over our bodies we can have embarrassing moments
all the time. Swinging our hands in the air, people think were drugged out on
GHB or some other heavy recreational drug. We walk funny, we sound drunk but
one of the worse is sometimes we gotta wear a diaper.
Incontinence is a very real very common occurrence. Many men
and women endure it for many different reasons. Having children, stress incontinence,
overflow incontinence, and this can be just in otherwise healthy individuals.
Normal pressure hydrocephalus, which is caused by an
increase in intracranial pressure and not enough of it absorbing in the brain
can cause it. One of the late stage systems of Friedrech’s Ataxia is UI. However from what I have gathered from my
doctors, incontinence can be common in patience with Ataxia because the nerves
aren’t working properly. This is why for some people they can no longer feel
down there as they use the restroom and they kinda have to guess if they are
using the correct muscles or not. I’ve never had a baby but I’m told it feels
similar to when a woman has to push after an epidural.
Here is a link to some information from ataxia.org.uk A
GREAT site for more info on Ataxia:
Some of
my family members have been getting questions about what’s been going
on with me. And/OR how come I’m so open about my illness.
I’ve
made the decision to be so open about what I have been going through because I
want to take the stigma and shame away from having a chronic illness.
The
stigma and shame is what causes a lot of the depression in our community. When
things aren’t talked about people wonder if it’s normal for them to feel those
feelings or experience what they are experiencing.
I have
gotten over the shame and want to find the funny; because what we go through
although some days is heartbreaking and irritating is pretty damn funny.
So
instead of there being an army of us sitting at home in pain behind our
computers I want us to unite and find the good we can bring to the plate.
We are
as a whole an inspirational people, and if we keep what we’re going through a
secret we won’t be able to help others who are not only experiencing similar
problems, but people who are just struggling with the everyday ups and downs.
That’s why
I have weird facebook status’, that’s why sometimes I over share. Because I have
seen to many women and men going through what I am going through and they are ashamed about what their body has done to them. There is no need to be ashamed.
Whether its Cancer or MS or Muscular Dystrophy or Dysautonomia etc. You are not your illness and you should not be ashamed of what you are going through.
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)
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.
It's Time to CELEBRATE! I finally BROKE OUT of the joint. I'm ready to party... as soon as I can walk!
I'm warning you i'm forgoing punctuation and spelling tonight. Sorry Scarlett frankly don't give a damn!
Last week I checked into the hospital for one very long week, full of tests and pricks. I was welcomed with four pricks to my arm to try to get an iv in my little veins; they sure don't like those needles so they suck themselves in making it impossible for nurses to place the iv.
Finally after two nurses and four pokes they called in the life flight nurse who placed it in my left thumb. That's right, my left thumb. I'll try to post pics later.
I was set up with 27 EEG electrodes atop my fine blond curls and roped to the bed. I looked like I was ready to go to a gay pride parade with my colorful wires. Which was fitting because I kept trying to repeat their motto to myself over and over again "It Gets BETTER!"
The first night was hell because my jerks and muscle pain was at a ten, which made me paranoid that i was setting myself up to be known as the whiny patient for the rest of the week. I didn't care and eventually gave in and begged for someone to help me sleep.
The next day the EEG Spec Doc came in to inform me I don't have seizures. And that they are psychosomatic and I need therapy. Then proceeded to hound my mother about my non existent horrible childhood. We kept trying to explain my main doctor asked for the EEG just to double check for herself but we knew because of the Mayo Clinic my convulsions are brought on by low blood pressure. But she just kept her ears shut and told me I need to love myself and get therapy.
My mom laughed at her. For better or for worse my self worth isn't anything anyone needs to worry about...
This is when I knew it was going to be a hell of a long week because It was obvious she didn't actually read my file she just came in gabbin proving her arrogance was a beard for her ignorance.
My main Doc, Dr S. came in a few hours later and I was terrified that there was a big misunderstanding of why I was there. There wasn't thank heavens, Doc S explained that there was a bit of an education going on and we continued on with the adventure.
The next day after a few more of my wiggly and stretchy limbs Doc Epilepsy came in and apologized, she kept saying i'm rare, and pointed out all the obvious signs that it war neurological and not psychosomatic. Like the fact that I didn't have any reflexes during my events, my face slid and my heart was funky.
I understand why Doc Epilepsy so easily misdiagnosed me, 50% of people who come in with seizure like symptoms are experiencing psychosomatic related events. However, after I have been to five different mental health professionals (who cleared me) and been down this road before two years ago with another doctor it wasn't a welcome visit down memory lane.
But once we finally got passed the initial annoyance we were able to make some progress. Like I said, we found I have no reflexes during my events. I exercised twice and my blood pressure went from 137/85 to 63/45 the first time and 117/73 to 42/35 the second time. I know i'm awesome. BTW my heart rate was above a hundred both times.
The week was just full of boring headaches and wiggly limbs with an occasional swollen sliding lip until monday. I had to get a spinal tap or LP that night but first I had to have a blood test where I sat completely calm and peaceful.
The intern student doc that was the most hands on kept reminding me to breathe and not think of the LP. But I was wound tight, couldn't stop bickering with my mom (we clearly had spent way too much time together in that tiny room) and as soon as the end of the test came Doc Epilepsy walked in which i'm sure made my levels go way up. So much for that test.
The spinal tap went beautifully thankfully to the Chief Resident who did it. The test for the LP was so complex that not a single drop of blood is allowed or else the whole thing is null and void. Thankfully she got it with such ease I do declare her fingers must be magical.
Right after the LP they stuck me three different times, to get blood, put in an iv for liquid to help me gain spinal fluid quicker and then another whuussy but annoying prick for blood sugar. I wouldn't of minded it so much if i hadn't been pricked so mush early that day.
I kept wondering why they couldn't have spread stuff out more.
Then the nurse came into inform me she was going to give me a shot to prevent blood clots.
amyagainsttheworld.blogspot.com
I couldn't stop laughing, not because it was funny but because if I didn't laugh I was going to either cry or cuss her out. So I laughed then begged her to put it away. I was able to talk her into let it slide since my blood is so thin to begin with, that giving me a blood thinner didn't sound like a smart thing to do.
I stayed on my back for another day then was electrocuted by a test similar to a EMG without the needles. I don't know, i've done it with the needles, and I think it was almost lest painful then the darn probs they had on me this time.
I think it's hilarious that I was so worried about the LP which turned out to be cake but wasn't even concerned about the fact they were planing on shooting electricity up my nerves.
To say the least my inner idiot got punished. Just know, I may have never given birth, but there were points in that test that I would have rather been pushin out a nine pound baby.
I finally went home late that day and had to stay on my back because my head kept threatening to scream out. Migraines after LP's are sign of the spinal fluid leaking which could be very bad, so it's vital you stay laying on your back and continue to drink water.
They unofficially gave me another title to add to my weirdieness. However I won't post it until it's official. The results from the LP need to come back before we can really jump to any conclusions.
So that was my adventure during my 2011 holiday stay at the hospital. One of these days i'll be staying at a spa during the holidays and not somewhere they are electrocuting my spine right after it was stuck with a huge needle.
I do have to say one thing, my parents are absolutly amazing. They were there consistantly which was extreamly annoying but knowing that there was someone there to hit the button when I had an event put my mind at ease. They never complained just loved.
I just have to say how thankful I am for my life. I was watching last Friday’s Barbra Walters Special, (“The matter of life and death”) and as I listened to David Letterman admit that sometimes he finds himself sobbing uncontrollably because he’s so happy to be alive, I could most definitely relate.
This next month my only brother is having his first baby. I’m completely ecstatic! Honestly I’m not the type of girl who sits around dreaming about one day being a mother, however a couple of weeks ago I helped out in my friends churches nursery. The Kids are all so sweet, I have many friends with many babies, but usually it doesn’t really phase me and I never get baby hungry.
But there I was in nursery holding this little boy not more then a year and a half old, talking as if he’d been talking for years, telling me about how he got a bruise on his head. His big blue eyes, soft squishy skin, and cute little voice made me melt. For the first time in years I thought it would be nice to have a kid of my own. As long I was guaranteed it was just like him of course.
I’m scared to be a mother because I know that if I were a mother right now I would not be able to take care of it as I should. In fact we’ve been discussing getting me a dog, we finally found one I liked and before we went to get it my mom sat me down and crushed me with the reality of things. I couldn’t take care of it on my own, and my parents, as much as they would LOVE for me to have a dog, are too exhausted taking care of both me AND the puppy.
That hurt…not gonna lie. The feeling of being a failure has already consumed me because I’m not near where I should be with school, but this was the first time it really hit me just how much of a burden I am on my parents. They try to tell me that I’m not and assure me they don’t mind taking care of me but the truth is I’m a lot of work on my bad days. It HAS to be exhausting.
So how can I be so selfish in even entertaining the idea of being a mother. I’m excited to be an aunt because then I can still share in some of those moments with my brother and sweet sister in law. It’s still hard to come to terms with though.
People always tell me not to worry that I’ll be healthy enough someday to do everything I want to do; I believe it for the most part. I will be well enough to carry on with school and my career. I’ll live a very happy yet not so healthy- productive life.
I just don’t think it’s a reality for me to have kids in this condition. It wouldn’t be fair, the guilt would kill me and I just think it would be selfish of me. I'd have to marry rich and hire a nanny.
I love my heavenly father, I know that with his help I’ll get through all of this. It’s just moments like this, I kind of with I could talk with him face to face so he could help me feel better about whatever is supposed to be.
I had another little chat with my nero yesterday, i'm so tired of the back and forth but I just keep reminding myself, it's not their fault they are just "practicing" medicine after all.
We rediscussed the school option and I explained the importance to me, that i'm not like most people and that I don't "stress" out over school except during exam season. We came to the compromise that I'll take online classes, something that never involves me having to go on campus, nothing that leaves me unsupervised in a testing center, and nothing difficult. They want me to start out with like a film class or art 101.
So I was able to take a DEEP breath, a chill pill, and realized I really should take it one step at a time. I'm so used to my five and ten year plans that I never thought i'd ever be making a one month or one week plan.
Oh well that's my new life, i'm just ecstatic that i'm going to be able to take an online class! woohoo!!!!
Yesterday I was told by one of my doctors that I need to put my education on hold even longer, and another doctor second it. Apparently my brain is being ‘over worked’ in their opinion. They say I need to give it a rest and let my body heal before I go back. This will be the fourth year I’ve been on leave from school. Yes, right now I’d be working on my masters if ‘nomi’ didn’t bother me.
For many people this wouldn’t be a really big deal, but it devastated me; almost as much as when they told me I shouldn’t be teaching in a classroom until I get better control over my body. They also told me today to think of it as if I’m just one of those students that take a year off and go to Europe. I almost punched someone. I’ve already taken three years off I think I’ve had a good rest, don’t you?
…Now time to find the upside, because the purpose of this blog is not to whine, but really see what can I make out of all this, how can I kick some Dysautonomia butt? So today after I was pathetic and climbed into my hole and moped for an hour I got bored, so I decided to make one of my lists of things I’ll do instead. Everything I can do with all my beautiful ‘limitations.’ NOTE: I promised I would take a break from my studies, but I’m a nerd through and through even in my deepest darkest parts. SO…I may ‘take a break’ but I bet my definition won’t be congruent to their definition, and frankly I don’t care I’m doing it for my own sanity.
New Activities and Goals
Write children’s books explaining disabilities to a younger audience, I see so many issues with some of the younger kids today, they are so confused about certain disabilities and the misconceptions even among adults is devastating.
Get my craft on. I’ve been inspired by our city’s art festival, and etsy.com. I figure even though being able to sew a straight stitch is as impossible as Heidi Montag going scuba diving without her boobs exploding; the other crafts are most defiantly doable.
Become a fabulous photographer. I’ve decided it’s something I can physically do easily and since one billion people are now buying camera’s and then photo-shopping the crap out of their photo’s to make master pieces why not I be a joiner too? One of my best friends actually has genuine talent. She has no need to try to channel Merlin to make her magic. So I’ll mooch off her knowledge and make her make me the Kodak Queen!
Calm my inner nerd. I will chill out on my studies and research even though I think it’s lamer then the Lord of the Rings trilogy. I’m still going to read the good stuff with real substance because if I was forced to read romance and Oprah’s book club novels my mother would probably end up finding me burning all the books in the back yard as I threw myself in the fire to put me out of my misery.
And last but not least I’ll find my inner chi. My best friends were really in to meditation in High School, and of course I was too ADD and couldn’t care less about calming my inner soul. Calm people make parties a drag. Plus I never understood why you would want to sit for hours on end mimicking the same position a monkey sits in as he eats his banana; especially if you’re not allowed to eat a banana.
However I’ve had a change of heart, an awakening of sorts, and I’m going to put my wiggly limbs to use. I still refuse to chant.
So the past couple life card’s I’ve been dealt really are making me wonder if I’ve got some bad Karma, but that will stop. Not necessarily because the news will get better, but because I refuse to let it define how I live my life. It’s my life, and I’m still going to figure out how to live it MY way! Wish me luck. I’m off to change the world.
