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.

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

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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.

Once There Was A Snowman

I've missed winter. As I listen to Pistol Annies new album, and I listen to the wind crashing into our tree's and Christmas lights I can't help but smile. This next week is this year's dreaded hospital week. Where I'll go and be analyzed for 168+ hours straight. But at this point I don't care, I may be off my meds which makes typing this incredibly painful, but it's worth every letter to say: Life is so beautiful. It's perfect, even with Naomi.

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Brainy Nerves

I took a quick gander through my blog, and not only was I reminded that I never remember anything I write, but that I haven't given the latest details of my diagnosis. So here they are and I'll keep it short.

Some how, don't ask me how I have no idea other then the fact my Spinal Tap was involved; they figured out that the neroceptors, and receptors in my brain are deteriorating and not firing correctly. Similar to Parkinson's Disease. However to my understanding Parkinson's involves the whole nerve to malfunction and break down.

Hence the reason why my symptoms are spastic and have a relapsing/remitting nature.

At this point any news, even the bad news, is good news.

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.

The Sense of the Unstressed

The fantastic fortitude of a positive attitude still astounds me. I absolutely love it. The mind is so intensely powerful that it’s no surprise that we know really nothing of it and never will. Many believe that those with a sudden onset of a chronic illness had a trigger aka, trauma in their life which exasperated what was silently waiting to take over.

I completely agree. I’m certain I was born with this illness; the first signs were shown when I was in fourth grade, continued very silently through my adolescence and only really showed through exercise or long days sitting in the classroom. The first hit that took place that let those close to me know something was wrong was when I was twelve after several stressors. It was slight but very present. It didn’t start getting annoying and disruptive until I was a jr in high school, and didn’t show it’s dragon like face until after I graduated and I had two sudden traumas that occurred one after another. Not only my mind and mental state was in shock, my body went through a shock and caused the genetic disease waiting inside me to crawl out and burn throughout my body. Studies back me up on this state of thought, thousands of patients will attest that they too had a trauma that brought it out.

So if a sudden trauma could cause a fault in your system causing a chronic illness to peek it only makes sense that meditation, stress reduction and positive attitude will help. maybe not cure, but calm the disease. All the more reasons to do what you love, cut out the people and subjects that are toxic from your life, and live hard while parting like a rockstar.

The Hard Workin Man

Right now i'm visiting my brother, him and my dad are getting ready to lay some gravel in the front yard. My brother has been complaining about his back because he messed it up snowboarding a couple of years ago. I've found myself wanting to go out and help, but i know the movement of bending over to sweep up the dirt and then up to place it in the wheelbarrow would cause my P.O.T.s to act up sending me face down in the dirt. And although the idea of a mud bath sounds fun right now i don't think it's for the best.
I would have never thought I'd miss manual labor as much as i do. I've always enjoyed mowing the law and still do it every now and then but it causes a bad reaction and i can surely expect an event that night.
I grew up in a fairly small town, pewney compared to the major cities, my best friends all had ranches and corrals. I'd go out and help with gathering up the hay, bringing in the horses, fix fences, everything you'd see in a good cowboy movie.
There's just something inspiring about hard work. I love it. I love that feeling of completing a task and that pride sweeping over you. It bugs me that the only thing i make with my hands now days is girly woosie needle point and birdhouses.
It's my goal to get back to doing as much as I can, I walk a little more each day, and push myself in the small things more and more to help my endurance grow. It'll get there. I've been teaching myself how to endure the pain in my heart. Every time it comes on i just take a deep breath and i guess, meditate, almost go into myself and tell my brain i can take it, it's not as bad as it seems and with my mind try to psyche myself out into thinking I'm fine.
At this point it only works like 30% of the time, but I'm expecting it to get better.

Chi-Town Time Freak

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Vomiting is the best form of humor I’ve decided. Nothing makes people giggle more then a good story about a vomiting and accidental peeing of the pants adventure.

Glad to be a source of good cheer dear fellow.

But honestly, good golly, I’d swear there’s little men in my body just having a hey day switching those spark plugs in my brain on and off. But I digress…

The last week was a fabulous one. I visited the majestic city of Chicago.

When I was there I was surprised because I felt fabulous 95% of the time, a record for the last couple of months! We’ve decided it’s because Chicago’s at 500 ft above sea level, (much closer to sea level then where I live) and this makes me wonder if going and living my dream of settling off the coast of Oregon would be a good game changer for us.

One of the days I was on my own because my dad was preoccupied with conference calls and such so explored it on my own.

We were on the magnificent mile, and for those of you who aren’t Chi-town savvy, it’s one mile filled with shops, one sign said over 600. (most of them were in a mall.)

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I went camera crazy visited an Episcopalian church which was absolutely beautiful, I meditated and digested it’s beauty. I had a good 4 hours to myself with no problems till I stopped for a bite to eat. I ended up at Jimmy Johns. I remember ordering, paying, and then all of the sudden I was across the room holding a soda cup, and I was waiting for my sandwich, when I realized it was already in my hand.

I have NO idea how I got there or how I got my sandwich. That’s when I knew I best be heading back to the hotel.

I called my brother and stayed on the phone with him to make sure I was back to normal, then headed to the hotel room as fast as I could so that if I were to lose time again I’d be at least closer to the hotel.

I can handle a lot, But man the whole losing time thing freaks me out, it’s like a bad acid trip without the exciting colors.

The plane trip wasn’t half as hell-ish as we suspected, I was very thankful for that. I only felt like dying during the major changes in altitude. I’ve got to admit I was disappointed my pacemaker didn’t set off any of the metal detectors at the airports though. Such a bummer, I love being suspected as a terrorist.

More and more people have suspected me to be a bad girl since I chopped of my hair and colored it a dark brown almost black color. I have better street cred now, little children cry and run away when they see me. I’ve been hit on by a lot of dudes with tattoo’s which I can’t say I’m opposed and I’ve all of the sudden get more perks at the music venues. Here I’ve been going for years and stuck out like a sore thumb as a cutiesie little preppy chick and all of the sudden because I look like I’m the type of girl who hangs out in alley ways with needles in my arm they adorn me with respect and free merch. Who would of thought a change in color would do so much for a girls persona. Maybe it’s not the hair and just the fact that they can now sense i’ve been schooled in the back streets of Chicago on how to be a real woman.

I’d say ‘don’t mess with me I’m dangerous,’ but I’m pretty sure my hair and wicked street cred says that for me.

Dear Porcelain Gods

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Okay, that's it! The VOMITING is OUT OF CONTROL!!!

Dear Porcelain Gods,

I wish to never visit you again. Please don't take it personally.

Thank you,

Your most frequent visitor.

It's official, my visits to the "situation room" are out of control and way to frequent. I'm trying to find ways to deal with it, so please, if you have ideas, pray tell.

I used to never throw up, then it started every couple of months and it progressed to daily. Now I wake up and drink my traditional two glasses of water the doctors have me drink before I get out of bed, and within min i'm throwing up. I eat I throw up, I work out I throw up, I just sit, I throw up.

So please i'm desperate, i really don't want to continue looking at my food and thinking, I wonder what this will taste like coming up.

mmm! Yummy!

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.

Brittany Murphy, Dysautonomia (Pots syndrome), Her Brother

Actress Britney Murphy went into cardiac arrest and died December 20^th 2009. Many speculate that she died of a prescription overdose because of the toxicology reports. Mainly because of the prescriptions found in the home, however I’m not so convinced, the drugs in her system were all over the counter drugs except for one, so she would have only had one prescription. Her Husband who also died from heart failure not long after her death claimed the other prescriptions were for his severe heart condition.

She had a severe case of pneumonia and the drugs found inside he could also just be helping her get over that.

There just isn’t something right about claiming it was an overdose. Her family members are determined to get the word out and spread awareness of what they believe contributed to her death.

Her Grandmother, Aunt, and half brother all suffer from Dysautonomia and P.O.T. syndrome. Although she was never diagnosed they say she displayed many of the same symptoms, including high heart rate, and extreme weight loss in a short period of time. Many claim she had anorexia but others believe it could have just been because her heart was overworked, or maybe a bit of both.

The following is a video of her brother Jeff who has suffered from Dysautonomia for years as he talks about Britney and P.O.T syndrome. The hope is to help spread awareness and open the eyes of medical professionals and the public on the severity of the disease.

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 Insanity Plea

When you are going through the hell of figuring out what the heck is happening to your body it’s a steady mission; a quest per say of which it is easy to find optimism by looking at it as an adventure. Of course it’s a crappy adventure but none the less you can trick yourself into thinking that with every new test, every new diagnosis you are just educating yourself. Educating on how the medical profession works, education on peoples body language (that may sound weird but I can now read doctors like an open book) and education in yourself.

I now am much more aware of chinks in my armor. I’m still fabulous but now that I’m more aware of myself it’s easier to admit when I’m wrong...which of course is rare, and when I should change something.

When all this started I was little miss independent. I hated getting help from others, because help was for the weak. I worked like crazy, studied like crazy, exercised like crazy, and partied crazy (well at least for my cities standards.) I only dated for the fun of it and only had one really big relationship out of high school that had absolutely no strings attached. It was much more fun moving from man to man, date to date, party to party, group of friends to group of friends. The only constant in my life was my family and an old friend Jess that came up to school with me from my home town.

Sickness humbles you; you have to admit you’re just as vulnerable as the Roman Empire. I had my ten year plan; I wouldn’t have ever seen myself here.

When you go through the hell of diagnosis you go through all the stages of grief over and over again every time the doctors change their mind or get new results from different tests.

Then you have other outside forces pulling you, like friends and families. I lost a lot of friends when I got sick. There was even one that complained that I wasn’t paying enough attention to her and her problems. Others just don’t keep up because they don’t understand what’s going on or they’re were just bummed I turned from being a crazy fun loving gal to one on a couch most of days of the week completely passed out. I’ve even had a little drama with my extended family because of it. they simply don’t understand the disease. At first this bugged me but now I’m glad. The friends I have now are few, but really very loyal. I take the relationships with the sexy man friends more seriously and I’m still a work in progress but them taking care of me doesn’t make me uncomfortable anymore. I know my family will come around, my bond with my mother is stronger then the wall of China, and the respect and love my father shows me would make any daughters heart melt.

Then when you  FINALLY get the actual final diagnosis and everything is pretty much sign, sealed, and engraved you have to go through the steps of grieving all over again.

I’ve finally found a way to deal with this.

I plea insanity.

Simple as that. I just don’t care anymore, I’m now a complete ditz, my thoughts are never completely formed and the flap between my brain and mouth that filters what I say, doesn’t really exist. At least I won’t go to hell now for lying.

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So I plead insanity, I dance in the streets, bounce in puddles, have long conversations with strangers, wear what I want to wear no matter how insane it looks, cry for no reason, take bigger risks, and many other fun things I won’t say just incase it will incriminate me later.

And you know what?

It’s AWESOME being insane!!!

The Compromise

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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!!!!

Today I Discovered I am a Masochist.

I have a HUGE weakness. Here in this part of the country we have a BEAUTIFUL place, a MAGICAL place, a PERFECT place we like to call...THE PIZZA FACTORY.

The addiction started in high school it was our little hang out spot then it didn't get any better when I became friends with the owners son. Oh dear oh dear. It was bad.

When I moved away I was sadden by the thought of departing from that perfect pasta (yes it's a pizza factory that made pasta) and heavenly, succulent, bread sticks. If man and food were allowd to marry I would marry those bread sticks.

So with tears in my eyes I parted ways and never looked back.

But then the other day I was looking for a place to eat with my auntie C and as we were driving up and down the hills throughout our beautiful city I saw the clouds part, angels started singing and there it was...a Pizza Factory glistening in the sun calling out my name. I almost fainted with excitement and had to put pressure on my chest because my heart started pounding and jumping out of control.

Because of it my aunt and I have gone there not once but three times in the last week and a half.

Now many of you may be thinking big deal, that sounds wonderful. but the thing is, I think i'm gluten intolerant or something. When I eat too much bread I not only spend the next three days in the bathroom puking and other things, but I also end up having episode after episode.

So it was NO surprise when I had a big ol' doosy of an event last night. It was one of the most terrible events I've had for a couple of months. Every sensory nerve in my body was going nuts. I couldn't touch anything without stings of uncomfortable spikes pressed through my skin. I can't explain it any other way then it feels the same way for your skin as it feels for your ears to hear finger nails on the chalk board. Clothes off, I was on my tip toes with my arms stretched out and my legs spread so that nothing was touching me. Including the carpet. The only thing that seemed to help was an intensely cold shower and spending a good couple of hours out in the cold. Then the migraine and wiggly limbs came.

and it may all be because of those heavenly bread sticks. (BTW when your obsessively track what you eat and do then compare it to your episodes and events, this will allow you to connect what triggers them.) Oh dear. Yes I know. So last night I swore I would refrain, not allow myself to be weak and never go back. But then my aunt came over and she needed a fix. Oh no, I've made her an addict. She was jonesing bad, and honestly, so was I. My mom gave me that look, you know the mom look. But my cravings were pushing me, chewing at me, my heart gave out and I went. Ordered my usual salad and bread sticks. and now 'I've been going back and forth to the bathroom and I know that by the time the sun is up my brain will be extra foggy and my i'll be fighting off my wiggly limbs.

I must be a masochist. I still want another one.