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.

When it's Time to Go

There’s another angel on the streets of heaven tonight, a little man who I knew from volunteering at Muscular Dystrophy camp.  Tonight on facebook I’m seeing many sad notes to our little guy, all sent with love and hope and condolences for his family.

The lingering clock over our heads is the hardest part of having a chronic illness. It’s something that every human has but we are more aware of it because we don’t have the pleasure of taking each day for granted. We don’t have to wait until an unexpected death of a loved one or a tragic act of terrorism to happen for us to realize this life is fragile. Our timer could erupt at any given moment.

This is a curse and a blessing.

A curse because for some you know you won’t live long enough to see certain events happen in your loved ones lives; graduation, marriage, becoming grandparents, anniversaries. And because of this you subconsciously or sometimes consciously distance yourself from others. You become one of those dooms day preppers getting your things in order, just in case.

I don’t know how to help you stop the worry and fear, but stop .

When my niece was born I was at my worst. This beautiful bundle of wide eyes and smiles was now in my life and I hadn’t loved anything that much ever.  She would stare at me with her great big eyes while she held onto my thumb and never looked away. I felt like her spirit was somehow talking to my soul and I would often find myself weeping.

Weeping because I was so grateful god saved my life all those many times my heart had stopped, thankful that I now had my pacemaker so I could have this moment with my ray of sunshine.

But I was also terrified. Terrified that every visit would be my last, because my body would give out or because I wouldn't be able to handle the pain anymore and I’d have to give up.

Those moments that should have been filled with happiness and peace were filled with frustration and anger and worry because I didn’t know if I was going to get to be with her long enough to see her grow into the sweet angel she now is.

It was a waste, I didn’t need to worry. And even if my time was to come and I wasn’t to see her grow here on earth I would still be angry I spent those moments with her with those feelings eating at me inside instead of just letting myself get lost in the beauty of her soul.

Plan if you need to, but don’t let those moments take over your life. Let yourself feel the fullness of love from the world and people around you.

 when it is your time to go you don't want to associate those sweet memories with your worries, you want to be able to take your bow and know without a doubt you loved, lived and laughed more then you ever feared. 

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.

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 Traditional Holiday Stay

It's Time to CELEBRATE!
I finally BROKE OUT of the joint. I'm ready to party... as soon as I can walk!

I'm warning you i'm forgoing punctuation and spelling tonight. Sorry Scarlett frankly don't give a damn!


Last week I checked into the hospital for one very long week, full of tests and pricks. I was welcomed with four pricks to my arm to try to get an iv in my little veins; they sure don't like those needles so they suck themselves in making it impossible for nurses to place the iv.


Finally after two nurses and four pokes they called in the life flight nurse who placed it in my left thumb. That's right, my left thumb. I'll try to post pics later.


I was set up with 27 EEG electrodes atop my fine blond curls and roped to the bed. I looked like I was ready to go to a gay pride parade with my colorful wires. Which was fitting because I kept trying to repeat their motto to myself over and over again "It Gets BETTER!"

The first night was hell because my jerks and muscle pain was at a ten, which made me paranoid that i was setting myself up to be known as the whiny patient for the rest of the week. I didn't care and eventually gave in and begged for someone to help me sleep.


The next day the EEG Spec Doc came in to inform me I don't have seizures. And that they are psychosomatic and I need therapy. Then proceeded to hound my mother about my non existent horrible childhood. We kept trying to explain my main doctor asked for the EEG just to double check for herself but we knew because of the Mayo Clinic my convulsions are brought on by low blood pressure. But she just kept her ears shut and told me I need to love myself and get therapy.


My mom laughed at her. For better or for worse my self worth isn't anything anyone needs to worry about...


This is when I knew it was going to be a hell of a long week because It was obvious she didn't actually read my file she just came in gabbin proving her arrogance was a beard for her ignorance.


My main Doc, Dr S. came in a few hours later and I was terrified that there was a big misunderstanding of why I was there. There wasn't thank heavens, Doc S explained that there was a bit of an education going on and we continued on with the adventure.


The next day after a few more of my wiggly and stretchy limbs Doc Epilepsy came in and apologized,
she kept saying i'm rare, and pointed out all the obvious signs that it war neurological and not psychosomatic. Like the fact that I didn't have any reflexes during my events, my face slid and my heart was funky.


I understand why Doc Epilepsy so easily misdiagnosed me, 50% of people who come in with seizure like symptoms are experiencing psychosomatic related events. However, after I have been to five different mental health professionals (who cleared me) and been down this road before two years ago with another doctor it wasn't a welcome visit down memory lane.


But once we finally got passed the initial annoyance we were able to make some progress. Like I said, we found I have no reflexes during my events. I exercised twice and my blood pressure went from 137/85 to 63/45 the first time and 117/73 to 42/35 the second time. I know i'm awesome. BTW my heart rate was above a hundred both times.


The week was just full of boring headaches and wiggly limbs with an occasional swollen sliding lip until monday. I had to get a spinal tap or LP that night but first I had to have a blood test where I sat completely calm and peaceful.


The intern student doc that was the most hands on kept reminding me to breathe and not think of the LP. But I was wound tight, couldn't stop bickering with my mom (we clearly had spent way too much time together in that tiny room) and as soon as the end of the test came Doc Epilepsy walked in which i'm sure made my levels go way up. So much for that test.

The spinal tap went beautifully thankfully to the Chief Resident who did it. The test for the LP was so complex that not a single drop of blood is allowed or else the whole thing is null and void. Thankfully she got it with such ease I do declare her fingers must be magical.


Right after the LP they stuck me three different times, to get blood, put in an iv for liquid to help me gain spinal fluid quicker and then another whuussy but annoying prick for blood sugar. I wouldn't of minded it so much if i hadn't been pricked so mush early that day.


I kept wondering why they couldn't have spread stuff out more.


Then the nurse came into inform me she was going to give me a shot to prevent blood clots.

amyagainsttheworld.blogspot.com

I couldn't stop laughing, not because it was funny but because if I didn't laugh I was going to either cry or cuss her out. So I laughed then begged her to put it away. I was able to talk her into let it slide since my blood is so thin to begin with, that giving me a blood thinner didn't sound like a smart thing to do.


I stayed on my back for another day then was electrocuted by a test similar to a EMG without the needles. I don't know, i've done it with the needles, and I think it was almost lest painful then the darn probs they had on me this time.


I think it's hilarious that I was so worried about the LP which turned out to be cake but wasn't even concerned about the fact they were planing on shooting electricity up my nerves.


To say the least my inner idiot got punished. Just know, I may have never given birth, but there were points in that test that I would have rather been pushin out a nine pound baby.


I finally went home late that day and had to stay on my back because my head kept threatening to scream out. Migraines after LP's are sign of the spinal fluid leaking which could be very bad, so it's vital you stay laying on your back and continue to drink water.


They unofficially gave me another title to add to my weirdieness. However I won't post it until it's official. The results from the LP need to come back before we can really jump to any conclusions.


So that was my adventure during my 2011 holiday stay at the hospital. One of these days i'll be staying at a spa during the holidays and not somewhere they are electrocuting my spine right after it was stuck with a huge needle.


I do have to say one thing, my parents are absolutly amazing. They were there consistantly which was extreamly annoying but knowing that there was someone there to hit the button when I had an event put my mind at ease. They never complained just loved.

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.