Getting back into the game...

Let’s do a little catch up!

So they took me off the carbadopa levodopa. (spelling completely) worked fabulously but made me sleep 20 hours a day. Literally 15-20 hours a day sleep.

And I ain’t no sleeping beauty, so heaven knows I was excited to get off it. 

Now I’m on Baclofen (also spelled wrong I’m sure) it’s mainly used for people with MS from what I hear but it’s used with MANY types of patients. A couple of my old students were on Baclofen pumps…if ya would of told me five years ago I’d have the same doctors and meds as my students… I probably would have thrown up.

HOWEVER I LOVE my baclofen. I’m a little worried because according to my doc I’m on the highest dosage and if my body gets used to it I may have to get a pump. Oi!

Which leads me to TERRIBLE news…my sweet, perfect, smartest damn doctor there is, left me…she moved across the country to keep reaching her academic and researching dreams.

God bless her, but I’m devastated.

I’m in good hands, with my new doc, although he’s old. I mean, so old he walked out of my room and started walking down the hall and a nurse came over to him and sweetly asked if he was confuse and told him his next patient was the other way.

“I’m not confused! I’m just going to the bathroom for cryin out loud! Eayeh!”

This would worry me but everyone I talk to says he’s a genius that has only gotten better with age. My gastro doc almost swooned when I told him. The old guy, Dr. G. was a mentor during the gastro’s residency. He told me, “Watch him when he thinks…he’ll close his eyes and do a light blinking thing. Then when he’s got the answer he’ll lift up his left hand slightly and his pointer finger towards the ceiling.” Sure enough that’s exactly what Dr G. did.

The baclofen has changed my life, I’m not even on the same playing field as I was before. Before, it was like everyone was in the football game and I was still siting in my car in the parking lot. Now I’m hangin out sitting on the bench by the sidelines with my compressions stockings; praying I’ll be able to put my cleats on soon!

I'll leave ya with some of my FAV video's...at least my fav this week:

and now lets let miss B take us to our finale...

Exercise, the Poor Man's Plastic Surgery...

I am so excited! The day I have been waiting for has come! Since 2008 I have been put on extreme exercise restraint via the docs and about a year ago they took away all things heart pounding.

This sent me into a deep depression because I have probably an unhealthy obsession with Turbo Jam and Tae Bo.

 But today I was given the go ahead for seven and a half min a day! Yup that’s right folks, this powerhouse gets to exercise two and a half min three times a day with this little machine…

 

I’m only allowed to use my arms; go about the distance a snail travels in an hour at the speed of a turtle but at least it’s something right?

At physical therapy I tried to convince them to let me do it longer but theys strapped a BP cuff on me and of course after a literally one and a half mins of turning my statolic dropped thirty points...so I lost that fight...

I also ordered my wheelchair finally a couple weeks ago so that now I will be able to go out twice as often. It’s been so annoying because although I hate shopping for some reason Love grocery shopping and haven’t been able to in I don’t know how long so now I can just hop in my little zebra striped glow in the dark chair and go! They say it takes 90 to process and make the chair so I’m dying on the wait.

And lastly can I just say how thankful I am for my momma?!? She is so freakin fantastic, and my dad has been such an angel. They get it. I could not go on without them. I’m so proud to be their daughter, so lucky. They are the best examples as human beings I have ever met. Well besides Monson and Eyring.

I’m so dang blessed!

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.

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.

picture credit

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.

MOO

Have I mentioned my AWESOME stomach? Along with my whacked out nervous system, third uretor, and paradoxical brain I have an awesome slow moving-lazy stomach…that hates lactose.

I’ve been gluten sensitive for a while, realized about two months ago that I’m showing a little bit of gastroparesis downward spiral and my doc put me on a strict diet limiting to things that digest more easily.

No raw veggies, only white bread, if I eat fruit I skin it first. I can only eat meat and eggs when I prepare it certain ways, for example, scrambled eggs don’t digest as easily as a little nervous over easy egg does. Then to top it off I’m not just sorta lactose intolerant, my stomach starts reenacting it’s own version of Texas Chainsaw Massacre as soon as that drop of milk touches my tongue. Apparently I can’t have bread, chocolate, or anything else with even small traces of milk in it.

I won’t die if I have milk, but over time my stomach will start looking like a crack addicts pot-holed skin face. But the only immediate consequences I get are constant trips to the bathroom, vomiting like crazy and tootin like a boy scout around the campfire.

It could be worse I guess. I could be completely gluten intolerant too…or be trapped in a cage with Sara Palin and Gene Simmons.

Growing up I always wondered why cows always hated me. I figured it's cus we'd go tip em over every night....Did they know my body secretly hated them too?

My Tramp Stamp

It's been ages since my last post, and things have changed a little for the better!

I'm completely exhausted right now because although things are looking up this last week has been a hellish whirlwind.

I had a Lumbar Puncture, better known as a Spinal Tap on Wed. It was the second one i've had. The first time it went off without a hitch, but of course this time I couldn't be soo lucky.

I ended up being one of the 20% with the biggest brain ache in the universe that wouldn't go away. I was of course hopped up on pain meds but not even my ridiculous high dose of Loratab could keep the little men hammering away at my skull at ease.

This is the band Spinal Tap. Yes, I know, they have nothing to do with my adventures this week, but believe it or not they are actually much less scary then a picture of the real thing....probably cus they are fictitious.

I'm a he-woman warrior though and stuck it out...that was until I got this mysterious pain that started at my sternum and flushed throughout my right breast and back.

At first it felt like bad acid re flux/heartburn mixed in with a under wire bra that was two sizes too small, but then it started radiating and I collapsed to the floor.

My eyes were bursting in pain from the headache and my heart was playing ping pong along with my blood pressure. But i could barely notice it because of pressure spiraling out of control in my chest, arm and back.

I've never been in that much pain in my entire life...and that's saying something. I really wondered if i was having some sort of heart attack.

So I finally gave in and let my parents take me to the ER. An X-ray, Cat Scan and one "blood patch" later along with a heavy continual dose of morphine my body finally calmed down from its Barnum and Bailey audition.

I was put on 24hr flat bed rest yet again, making it a total of about 48hrs just lying on my back this week.

Oi.

Thank heavens I've got my peeps JN and CG to come and keep me company at my grandparents. CG works in the death business and after my fiascos we started talking about my death, which comes up often, and my grandma informed him that when I die she has a dress that may work for me.

Yup, granma is gonna out live me.

Weirdly i'm very comfortable with that.

Best part of this week, I now have a bruise that's sort of in the shape of lips. I've always wanted a tramp stamp...