More Tales of Insurance Nightmares

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. 

This is mid to advance stage

I am oh so Thankful....

I am grateful for my disease.

Yes, you read that right, so very grateful.

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.

Everybody's a Critic and Everybody's a Medical Specialist

Self diagnosis is bad enough-when you find yourself becoming a hypochondriac over every new oddity you find out about your body you can drive yourself crazy. Dude, sometimes a lot of mucus is just a lot of mucus, a skin tag is a skin tag, and a pain in your side just means you slept funny.  But the one thing worse then self diagnosis are “friendly diagnosis’”

Example 1:

THEM: “I don’t know, are they sure you have episodic ataxia, I was watching Mystery Diagnosis and a guy on there had your exact same symptoms!”

Example 2:

THEM: “Have you tried Esenssial Oils? I think the reason why you are so sick is because of all that medication you are on, you need to choose a healthier alternative, try it you’ll see a world of difference.”

The thing that drives me the craziest is when you become psychoanalyzed. If you’re tired cus you didn't sleep the night before and you are in pain, people think you’re depressed.

I understand these people all are sweet and most of the times have the best intentions at heart and for that, thank you, I really appreciate it. But unless you are a doctor that has access to all my medical records, let’s keep the conversation to the fun stuff shall we?

Within the Bended Light

So there is a story going around you have probably seen about a woman named Brittney who has chosen to take advantage of the death with dignity law. There is also a beautiful letter written by another woman who is begging Britney not to commit "suicide." It's prompted me to just say this:

The beauty life on earth brings to the spirit mind and body together as one, is one that if it were to be described as an action, I would compare it to that of the combination of the force of fission and fusion. Similarly, when the mind body and spirit begin to separate it is one of the most humbling, spiritually revitalizing experiences one could have.

The way life, colors, light and emotions were once perceived seem nothing less then stunted. You look back on life and realize you've been living in the first ten min of the black and white sequence of the Wizard of OZ. The every day life you once lived, now seems so silly, dark, and broken. I miss those times I lived in-between the light and was able to witness the colors and emotions with the greatest intensity of vibrations that one could imagine.

I miss being bathed in music the way one feels standing beneath a waterfall. I miss knowing, and understanding things and having that knowledge feel like a nice warm blanket next to a winters fire. But most of all I miss the love and freedom from pain. I guess that's why I sympathize with Miss Britney, loving the thought that she doesn't have to suffer the pain and confusion that comes before the light bends. And as Kara points out there is something beautiful that comes before death within the grace of our Heavenly Father.

I don't know which one is right, all I know is this: when it comes to that time in your life, whether you have warning or not, don't drown in fear. Release yourself into the arms of His love. How do you do that? Pray, and ask. The calm and peace that will eventually come over you, maybe not at first, but eventually, will be the most beautiful, breathtaking experience you will ever have. Every strong emotion, every oz of love you have ever felt will be rolled up into one big overflowing blanket of peace, heavens love will surround you, then you'll see the colors, and the light will bend. After that I do not know, but I do know it's nothing short of glorious.

Brittney's Side          Kara's Side

I Am So Smart...SMRT

I’m starting to realize more and more the most upsetting thing about my illness is not the pain, or the weird walking, or being limited how much I can work or even having to get a ride everywhere I go. The most upsetting thing for me is remembering what my mind once was, and comparing it to what it is now.

For some reason when writing I seem to be able to get my point across okay, and what I want to say comes out pretty easy…most of the time. However in verbal conversations, no matter how short or long, how deep or simple minded I find myself having so much more difficulty.

Explaining myself to others is sometimes pointless, trying to remember the names of certain things or spitting out a phrase when I need it has become like I have a mind stutter.

I either have a hard time getting it from my brain to my mouth or I have a hard time finding the correct verbiage all together.

Then there’s the intellectual side of things. This past week I had to do more Work Ability testing to see if my mind and body are ready to go back to work and school permanently. To think that I was once considered a genius makes me sick. I look at the patterns and puzzles and remember my old IQ testing and how simple it was for me to blaze through them with ease. Now I stumble through everything from the puzzles, to the fractions, to the memory testing, to the problem solving.

I have hope though, I know that if I continue writing and reading while I use Kahn Academy, it I’ll slowly rehabilitate to what I was.

They say the slices of Einstein’s brain they preserved showed neurons and pathways that were as healthy as a twenty year olds even though he was in his 70’s when he died. They think it was because of his constant “mind experiments.”

I’ll get there. I have to, it’s my Everest. My faith, my intellect, and my optimism and my quirky personality is what makes me, me. If I don’t find that girl again, I don’t know if I’ll be able to completely accept who I am.

Which sounds stupid, I know. I might as well be a twelve year old girl saying I’m not good enough because my eyebrows are plucked perfectly. But understanding the world only through feeling leaves you unguarded. Although intellect is by far the lesser of the two you must have both to truly understand this world and the life ahead. 

It's all Shits and Giggles till someone Giggles and Shits: Dysautonomia & Ataxia's dirty little secret

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:

Ataxia and Incontinence

Behold the Bearded Lady

source

A bit of an update…

I’m in the midst of doing testing to see which particular kind of Episodic Ataxia I have. Because of this I am now off my beloved baclofen and it has sent my gastroparesis flaring up.

Just a little reminder Gastroparesis is when the muscles in your bodies digestive system work poorly or not at all. I am very lucky I have good kind of GP I just stay away from certain meats and whole grain foods and random things here and there and I’m fine.

However when I am off the baclofen it does get worse and I have to resort to a liquid and baby food diet. Every now and then my body will let me squeeze in a chicken nugget or processed hamburger but for the most part it’s applesauce and protein shakes for me!

The reason why they took me off the baclofen for the testing is they want to see how my body does at it’s “natural state.” Then they will have a few blood tests and hopefully we’ll have things narrowed down even more.

I’m also very excited because the doctors have agreed to let me continue to do the hormone therapy that swings my body into menopause. They do this because with Episodic Ataxia and many Autonomic diseases menstrual cycles can become very dangerous because symptoms get so much worse.

The down fall is that I’m starting to see signs of becoming a bearded lady, and I sometimes cry because the sun is beautiful that day.

The powers at be are intimidated by my disease still and say I shouldn’t work, but I’m still volunteering consistently at least 6-8hrs a week. I’m a lucky girl. For all I have been through it seems so small in comparison of what it could be if I were going through it alone.

Xo joami

Be Not Ashamed.....A little tale of why I overshare

Hey Friends!

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.

The Best Lessons Come in Crappy Packages

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.

Here We Go Again

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!

If not, I hope I’ve at least made you laugh.

Stop being a whiner and blaming God or Bad Luck...YOU CAN DO THIS!

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.

Look how tough I really am world.

I’m a freakin' animal!

Wyatt Earp, Hero or Outlaw?

Yesterday I felt like killing my miniature American Eskimo dog. We got him because some genius told us he was a great seizure and police dog, because they are so good with scents and people. At the time we got him I was absolutely elated because I wanted a puppy so bad. Someone to be with me when I was lonely and someone who can help alert my family when I have an event.
Someone said our little buddy would be able to do all this.

Well, someone must of been on crack, because I don't think the poor little guy has it in his genetics.

We named him Wyatt after Wyatt Earp. If names really are self fulfilling prophecy's then that probably wasn't the smartest thing to do.

On to the story- Last night I went upstairs to get a midnight snack. Coming back down the stairs I slipped on the last steps. I don't know if my leg gave out or what but I was on the ground and my lower limbs weren't working and I had partial control over my top.

I called out to my parents several times, over and over again. Nothing. So I thought to myself....Self, this is why you have Wyatt, why don't you get him to go tell mom and dad that Timmy is in the well. This was his time to prove himself.

I was able to open the door to the basement to let him out, he ran through it, sniffed me a couple of times then ran to the top of the stairs. I was so excited! Yes! He's going to help me.

 (when he was one month old)

He sniffed around the top of the stairs and went into the living room for a second then went back to the top of the stairs and sat again. He turned his head to the side and gave me a "whatcha doin" look.

I then said "Go get momma Wyatt. Go get momma!"

He didn't budge.

"Go get momma baby, please Wyatt, go get momma." I at this point was in a lot of pain and had a crackle to my voice.

He stood up and turned to go to their door, then turned around and came barreling back down the stairs and started licking my face.

He was drinking up my tears and sniffing my entire body. I'm sure I was setting off a scent that was new to him so he felt the need to explore it. Me being the idiot thinking he could understand me began expelling to him that when I smell like this you need to go get mom.

I then convulsed and I hit my head on the banisters railing. My arm twisted and my muscles started spasming so I yelped in pain and then commanded Wyatt again to go find my mom. Instead he took this a sign of attack.

At first he started nipping at my hands and nudging his nose under my arms and legs. This is usually what he does when he wants us to play with him, but after I wouldn't play and my convulsions started getting more sever he started biting and pulling on my hair. I started screaming on the top of my lungs for my parents and he kept nipping, and nudging and tugging. All of a sudden for who knows why he got up on the stair right above my head and started clawing at my hair like he was burring something. I continued screaming and he started biting at my nose.

At this point I couldn't move, I couldn't defend myself so I just had to take it. I think he thought my screaming was some sort of attack so he went bizurk.

(a couple of weeks ago in his santa suit, age five months)

It seemed like forever by the time my parents finally came. I'm sure the whole deal start to finish was about five to ten min but it felt like thirty.

I have a scratch on my forehead down to my nose and a few bruises and I refused to talk to Wyatt all day. The trainer says he doesn't think like that, that he only knows he's done wrong if we discipline him right away. Then he'll forget until we continue to discipline him right after he does it again.

I don't care I'm still pissed at him, but I'm also pissed that my parents were just down the hall and didn't hear me. My dad keeps saying I need to wear an alert button, but what good does that do if I'm stuck, and can't move to push it.

My little Wyatt may be extremely adorable and full of love, but that dude is a little fart. Were taking him to doggie kindergarten soon. Mom keeps threatening that if he doesn't pick up on the commands faster and start "doing his job" that she's going to have to give him away and get another dog that's already trained for someone like me....uh yeah, like were going to pay thousands of dollars for a service dog.

Besides, Wyatt is my baby, how could I give him away?

The Pure Me on Thanksgiving

Happy Thanksgiving to ME!

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.

Babies!...I can't believe i'm talking about this...

Source

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.

Oi. Enough with the Sympathy Already!!!

So here's the thing...

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.

Professional Nonsense

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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.

Nomi the Lonely

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.

Dissing Dysautonomia

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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.

Ride on man, ride on.

"Doctor there's no way I can be pregnant, gestation freaks me out."

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Today I had the privilege to go visit my ObGyn and as I was lying there and feeling like I was on a crate of dynamite while riding a horse I began to have a delightful discussion with mydoctor. Why is it that when something new and weird shows up the doctors always resort to asking if I could be preggers? Even the ones who KNOW how much birth control I’m on, including the ultimate beauty of abstinence. That’s right people I’m abstinent, by choice! I know who’d a thought that there were still virgins in this world? Well I could show you a few people who qualify. Yes, we all live in bomb shelters and have never been exposed to the outside world. Beside even if I wasn't a nun I still would do everything in my power not to get pregnant, gestation freaks me out.

So Dear Doctors,

Just because I’m weak all the time, have extremely low blood pressure, and vomit every morning at the exact same time and after every meal; it does NOT mean I’m pregnant.

Please figure out what’s wrong, and believe me when I say, there’s no way in hell it’s possible!

Sincerely, your high paying patient.

On a more happy note I received my Mayo Clinic paper work in the mail today. It’s been a long fight, many tests, even more doctor’s visits, a couple of surgeries but I finally made it. I’m on my way! And even though I know that there’s no cure, I still believe a miracle can happen that will help treat me so I can have a better quality of life and longer life span. Wootie! Wootie!

And to top it off Jimmy Eat World’s on letterman tonight! So minus the lame brain doctor It’s been a freaking awesome day and I’m one happy girl!!

The Art of Dying

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Growing up I always wondered what it would be like to die. I dunno I guess I thought it would be much more exciting and dramatic or something then it really is. But then again the several times I died I only died for seconds to minutes so who’s to say I actually got the whole big shebang. I sure hope not. Maybe I just got the commercial preview and not the actual cinematic production.
I had several near death experiences, they were wonderful and i'll hold some near and dear to my heart but it wasn't like a big cinematic event. I was expecting to be Robin Williams in "What dreams may Come" But it was simple.I’ve always thought trumpets should be blazing, thousands of people I have no memory of and ancestors from centuries past should be there to greet me with flowers and heavenly gifts. There should be a party in my honor and for a good hour or so I should be the center of attention and queen of the party; tiara wearing and all.I don’t think that’s the case anymore, in fact I don’t think it’s even close. I bet when you die, you experience the illusion of light brought to you by the great nerves going off like fireworks in your brain. Then you sit up out of your body, look back, think to yourself ‘gosh darn it, I sure was a sexy beast’ then pow! You’re in heaven.A couple key players would be there to greet you but it’s no big tah-do, then you’re immediately put to work.I’ve never understood why people think once someone dies, the dead go back to their own funeral to watch. I personally have already experienced my life, I don’t need an inflated optimistic summary of it. I think I’d fall asleep and drool all over my wings. That is assuming that I already earned them.I bet I have. Earned my wings I mean. I’m a pretty fantastic girl I think. Or at least that’s what a pompous self-righteous dogmatist told me yesterday. He said I had an over exaggerated view of myself as far as my saintly-hood goes. I may think I’m sexy but I do not think I’m a saint. I don’t share my Oreo’s enough to be a saint. But just to be safe I asked my shrink and she agreed, I am not a pompous narcissist.
I really hope God let’s me come back and haunt people on my breaks. I think I’d hide a lot of shoes. I like the idea of messing with the thermostat so that people sweat once they see their electric bill. Isn’t that ironic, sweating while looking at the bill for excessive air conditioning? Gosh I’m funny. Or just really tired.I hope heavens cold. I hate the heat, but maybe that’s just because my P.O.T.S. makes it so I’m an over worked farmer. By the way, holla at my peeps over there in the fields, you deserve way more then you’re getting paid! Keep bringing on my tomatoes, I’d die without them.
That would really suck if that’s how I died after all. Here I am spending all my money on hospital bills and over priced medication and then I die from shortage of tomatoes. Just my luck. I knew I’d die from something stupid.My dream way of dying would be slamming into a large gas tanker after a long high speed chase. Preferably with a psychotic super spy, not the police… I’m terrified of having a record. The huge explosion and thrill of the chase would make the whole dying thing much more entertaining and less of a bummer.But alas I’ll probably die because of tomatoes. Tragic, I was such a lovely person....I really shouldn't write these when i'm this exhausted.

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