Nerves!

Hello!

I am a few days away from starting my Tecfidera therapy and I'm a little nervous... I will get blood work first, but, I'm nervous.

He said I'll most likely be nauseous, have stomach aches, heart burn, and everything bad associated with the stomach.

Hmph.

But, if it makes me feel better I guess I'll take it.

Tecfidera's retail cost is $55,000/year.  Imagine if I did not have insurance?  I would die.  :)

 I called the clinic and told the lady that I know I am supposed to get blood work before starting this, but she said 'naaah, you don't need it.'

Um.

Pardon me, Ms. High On A Throne, but...

2.2 Blood Test Prior to Initiation of Therapy
A recent complete blood cell count (CBC) (i.e., within 6 months) is recommended before initiation of therapy to identify patients with pre-existing low lymphocyte counts.

Hrm.  I'm hoping he just will order it, because I'm a little nervous now.  Let's see if I can see more where it says that...

Prior to starting this medication, the prescribing information for Tecfidera recommends that your doctor check a recent (within 6 months) blood cell count (a simple blood test to make sure that your lymphocyte (white blood cell) count is within the normal range. Thereafter, the FDA recommends annual blood cell counts and more frequent ones if clinically indicated

Now, I know he's a specialist, so, I will listen to him, but, this seems like a simple thing to do.  I'm not asking to be launched to the moon with Michael Symon.

I hope this all works out.  I'm scared!!

I am filling out a form for SSI, as my money is going down, down, down the drain... until!  It will be gone.  Thank goodness I got my cell phone bill down to about $40/mo.  Soon I will cancel and go with Republic Wireless for $20/mo.  Then I'll have more money for food.  Fruit.  Veggies.  Apples.  I like apples most times.

I have to go, I am going to throw up.

Love always,

Jaime Lee
11:11

Revelations of a Pictoral Memoir

Hello!

I just laughed out loud.  See also https://en.wikipedia.org/wiki/LOL

I realized that when I looked my worst (see  http://iusedtobeanalligator.blogspot.com/2013/07/pictoral-memoirs.html), was when I was dating Hula Funness with a Side Order of Lie.

I never realized the change in my face (much less my stomach, lol)  (see also again https://en.wikipedia.org/wiki/LOL ), I seemed to be missing something in my eyes at that point.

Amazing how we, as in society, let other people dictate how we feel about ourselves.  But now that I am single (still), I can see it through fresh eyes!  Lesson for today?  Never EVER let someone make you doubt your self-worth, your exceptionalism, or your uniqueness.  You have one life to live, you never know when it will be over.

So!  With short hair and a smile on my face and a small risk of developing PML( See:  http://www.ninds.nih.gov/disorders/pml/pml.htm)  I will be happy!

Love always,

Jaime Lee
11:11

Pictoral Memoirs.

Yaawn.

I can't sleep.  It's 8:03 am!  I've been trying to sleep since 2.  Fail.

My doctor got me approved for Tecfidera!  I apparently have to take my first dose while being watched and monitored, incase of heart blockage... :O

Holy Scary Medicine, Batman!

Then I need to get blood work to see what my white blood cell count is.  Apparently in the hospital it was super high (assuming because I was on steroids, derrrr!), but they will need to keep a close eye on it if it gets low, then I might be at risk for an opportunistic infection or the brain death disease!

I don't wanna die!  But, I suppose I need to feel better.  I made a graph of how I'm feeling.  Wait!  Can I draw graphs on here?  Hold tight, lemme check-a-roni.  Nope.

But!  As my Copaxone bad side effects go up, my health goes down.  So!  Let's make a bogus mathematical equation!


Assuming that:

Bumble=health
Madness=side effects
X=Random variable that is bad

So. 

       2(Bumble x 4)
-----------------------------  =  1 Bumble (Give or take .5)
  Madness Squared (5x)


So there you have it.  All figured out mathematically.  So hence therefore thou art... Nom Nom feels terrible.

I am super jazzed about the prospect of having a medicine that will maybe make me feel more alive and awake and able to have some type of life! ¡™£¢∞§¶•ªº–≠

Excuse me, random symbols just exploded out of my brain.

Insert random picture here, for more visual effect.

Niiiiice.

Insert a better random picture here, for more better visual effect.

That is Kitty Goomba!!  Silly iMac and its fun photo features.  Woah.

Me in 2006.  Let's see.  What was going on?  Yes!  I had just graduated college, and was dating Boyfriend #1!

2008!  Let's see.  After Boyfriend #1, perhaps just dating Random Boys, i.e. Steve

2008-Random Boy #2, i.e.  weird Dick's Sporting Goods boy

Ah yes, 2010.  Infamous Bad Boyfriend #2.  AKA Hula Funness with a Side Order of Lie.

     
2011.  Another infamous Bad Boyfriend #3.  AKA Batshit Crazy Times on the OK Corrale.

Later in 2011.  Fun   Times with Singleness!  Dressing up!  Making eyes, flirting with Chinese Gas Station Man!  Herro Prease!

2013.  Short Hair, Minimal Makeup, and happiness!

Love always,

Jaime Lee

11:11

Diary Of A Tired Nom Nom

Hello!

I am still tired.  I took an eight hour nap today.  Hmph.

I might have to go back to the hospital and have another round of steroids.  :(

The Specialist Harvard Man (teehee) says it might help me.  I suppose that'd be nice.  I don't like it, but, I have to think of the long term now.  I don't know how long this relapse will last, but he said I am improving though.  So that's good.  I just hope the tired goes away.  I do have the dreaded foot-drop when I first get up.  I am intrigued by Foot Drop.  I want to know what it is and why!

I am still blurry in my left eye, and I have to renew my license and take an eye exam.  OH no.

Think I will pass?  I bet I can, since I'll get to have both eyes open.  Yay Nom Nom!

I am slowly running out of money.  I am a little worried about this... I worked an hour today!!  Woot Woot!  I think I have to find out about programs that can help me a little...

The Specialist Harvard Man (this is what he will always be referred to now, because it sounds fun), although it might be conceived that I am being disrespectful... that is not my intention!  I come up with names since I can't remember things all the time... so don't get me wrong, he was so very helpful and I am grateful that my Bassett Neuro Man referred me... :)  He first said I can do the steroids at Bassett, I quickly said no, I'd rather do it at St. Luke's... I'm more comfy there.

So, what was I saying?  YES!  SHM asked if I notice other changes, such as mood or other such things.  My mom laughed, as everyone knows the quirks I have developed recently.  Such as!  trying to say something, but nothing comes out.  Boy is that one annoying.  I try to talk less because of the fear of looking ridiculous.  I am smart, but, to an outside person I think I come off as dumb.  :(

He also asked me if he is my primary neuro now, or if he and Bassett Man will be working as a team.  I think it'd be nice to have a team, since I love Bassett Neuro and am very comfortable with talking to him and he's known me for so long, but I also love having an MS Specialist on my side now.

Yes.  I will take both!  Well.  That is, if my insurance lets me... :(

So,  I know none of this is of any interest to anyone reading this, but, since I forget lots and lots, I decided this will be my diary.

Diary of Jane.

Wait, that's not my name...?

Love always,

Jaime Lee
11:11

Diary Of A Mad Nom Nom

Hello!

I can't sleep now.  I sleep 15 hours, but then I can't sleep.  I've been trying since 12.  It is 6:30.  I went for a walk around the house a few times.  Played with the kitties and the dogs.  Found a bug on my head.  Made my shoes squishy.  Got too exhausted, so I came back in.  Holy Failed Workout, Batman!

But all is good.  I am alive :)

I've been doing a lot of thinking lately.  Perhaps that's why I can't sleep.  I am weighing the pros and cons of the medicine I might take.  He said I might not be able to get Tecfidera first without trying one other drug, which he said I should try Avonex.

It's only a once per week injection, but into the muscle this time.  Maybe it won't be as scary as I think.  But the needle is much longer (obviously) and thicker.  :(  And the flu symptoms for a day.  Not fun.  But, like he said, I don't want to be in a wheelchair in five years.  I suppose I'll have to go with the aggressive one and deal with the side effects.

I feel terrible.  I am so tired.  Not even tired though, just, exhausted.  I miss having a little energy and doing yoga.  :(

Oh well.

I want to cook-out today.  I want steak.  And salad.  And lemonade.

Below are some cakes I did.  Yay Nom Nom!

Okay.  I think I will try to sleep.  Typing has made me tireds.

Love always,

Jaime Lee
11:11

Tecfidera, here I come!

Hello!

I went to my Latham NY MS specialist appointment!  I like this place.  I also realized how pretty Saratoga Springs is.  I would totally live there.

He says I should change my medication now, and that I probably have become allergic to it.

He suggests a twice-daily pill!  Imagine?!  No more injections every day!  Wow.

That will be a huge change for me... so, I've injected roughly 2,555 times now.  I would love if that could be over with... My skin has formed so many leathery bumpeys that the shot won't go into my skin most times.

So!  Tecfidera.  I think I should listen to the man with the Harvard Degree.  Yes :)  He was very knowledgeable, I wish I could have talked to him for hours and hours.  He did devote two hours to me, which was so great.

He is also setting me up with a Urologist, and they will do an exam to see if I am emptying my bladder every time I pee, because he does not think I do, which could make me have infections, which could be why I feel so lousy.  Then he says I should learn how to self-catharize.  :(  Sad Nom Nom.

Sounds scary, but, I gotta do it :)

Then he said I have a lot more brain lesions and obvious spinal lesions too, given my symptoms.  And he said my hearing problem is in my brain, not my ear.  I am not crazy :)

So!  Holy World of Changing Circumstances, Batman!

I will prevail!

Love always,

Jaime Lee
11:11

Random Musings and Pictures of A Goomba.

Hello!

http://www.youtube.com/watch?v=uNHIcl-KS2k


I am looking forward to going to Albany to my MS specialist.  I want answers!  I also need to think about applying for SSI.  I don't think I can live on 7 hour per week... :(

Nom nom=sad face.

That's why I need a cheap cell phone plan.  I am cutting back to do my bestest!  You have to live within your means, and I have accepted my limitations.  I don't like that I even have limitations, but, life will be a lot easier if I do.

So I do.  :)

My cat's new nickname is Glue Trap.

Would you like to know why?

I had a sticky flea thing under my bed, since he had fleas a year ago or so.  I never got rid of it.  He apparently went to sniff it, and.... it stuck to his face...!!

I did not see this happen, but, it apparently made him so nervous, he puked on the windowsill and then peed in his own bed.

I saw the massacre of puke and piss so I went looking for him, which is when I found the glue trap thingy on my floor with tons of his fur on it... !!!!

I felt so bad for him... poor Glue Trap!

Or, GTO.  Glue Trap On!

Insert random picture here:

Hehehehehehe.

That was him chewing on my Mom's antique rocker.  BAD GLUE TRAP!

Baby Glue Trap!  Awwwwwwwwwwww....

A Goomba.


Love always,

Jaime Lee
11:11

To Bang Or Not To Bang.

Yes or No?

Love always,

Jaime Lee
11:11

Holy World of Savings, Batman!

HELLO AGAIN!

I am really excited to start with Republic Wireless, I cannot contain my excitement much longer.  I keep telling my brother about it, and we will switch.  I am not sure if I should wait until they come out with nicer phones this summer...

Perhaps they will also offer iPhones?  WOAH.

But I used their savings calculator, and by switching to them, I could buy a washer!  And I'd save about $1000 in two years...

Then I can start putting that money away towards my modular home.

OH!

I found a floor plan that I want... check it out, Batman!

http://www.apexhomesinc.com/apex/plan/locust.htm

Yes.  I will have a Jacuzzi in my Master Bathroom.

Because know what?  The only two things I care about in my cute modular home are kitchen and master bathroom.  All other things are secondary to me.  I require a kick-ass bathroom, with a Jacuzzi.  And a TV like in the Wingate hotel.  Yes.  I also require a kick-ass kitchen so I can gain even MORE weight.

Hehe.  No.  I think I want to get lap-band surgery.  Seems the safest for my condition.

Yup.  Sign me up at the... lap..band...store..?

FAIL.

So.  I will have my modular home and trees and an awesome bathroom, an LG tv, LG refrigerator, and LG washer and dryer.

I am also a huge fan of LG, I think they are awesome.  Life's Good!  :)

Love always,

Jaime Lee
11:11

Republic Wireless

Hello!

I believe I am going with Republic Wireless.. which means I will have an android phone.. and I will pay $20/month!!!

Take THAT Verizon!

Love always,

Jaime Lee
11:11