with verena :)

Tuesday, April 23, 2013

Set back. and prom.

  Hey y'all

Well today was icky.  Started out with early clinic. 

Then school for a few hours.  At the end of the day mom got a call from nuro saying we are going to stop ivig.  Even though the reaction I had was mild, we can't risk a more serious reaction. 

He is out of town at a conference but will be back early next week, so we will talk about what's next then.

That's we're we are today. 
Also prom is on Saturday. 

<3 Hannah

I blog with BE Write

Monday, April 22, 2013

I have a case of the Mondays

  Hey y'all

So today was loong.  We headed to the infusion center bright and early this moring.  I started out like it did last time, about a halve an hour of per meds then ivig starts.  
Unlike last Time I had a reaction, just hives, but it could have gotten worse so it was taken very seriously.  We held the ivig and got MORE bynedril then they called the on call nuro guy to come see me as mine is out of town.  Hey decided not to finish the dose today, and as the hives went away after awhile (and stayed away) I was alowed to go home later this afternoon. 

They emailed my doc to see what he wants to do.  It may just be more per meds and a slower run time or something else, we'll just have to wait and see. 

Tomorrow I have clinic at the other hospital.

Fuuuun stuf :)

More when there is more.

<3 Hannah 

I blog with BE Write

Sunday, April 21, 2013

We walk by faith, not by sight

  Hey y'all,

So after meeting with the nurologist on Monday, we have desided to take a more 'aggressive' action against my mg.  I have started ivig infusions and steroid pills.  We started the steroids on a very high dose with hopes that maybe in a few months we will be able to start going down.  These meds have very icky side effects including changing appericance, bad headache, muscle acke and tiredness.  Those are the ones I've had so far, I'm sure there are more lol. 

So not really were we wanted to be, but hopefully this will start to work soon!  I just want to get back to playing tuba, as I have not had the strength to in a few weeks.  Another lame fact Is that I have a dose of ivig the day before prom :P oh well, what are ya gonna do? 

So I guess it could be worse, we are lucky to do these infusions outpatient.  I could be in a worse boat, but not gonna lie this boat feels pretty crummy right now.

In church today we sang a hymn,  we walk with faith not by sight. Sooo true this week.  Not sure we're we are headed just yet, but I'm sure it will all work out.

<3 Hannah

I blog with BE Write

Friday, April 12, 2013

emg and such and such

hey y'all

its been a wile!

i had the emg under sedation last tuesday.  it did conferm the dx of MG.  it also showed a chance that i may be going into remmission, were the disease goes inactive for a period of time (or forever).

we were cautional optimistic.

untell wednesday when things started to go downhill.  i am in a bad mg flare and its no fun.  i see the neurologist on monday.

thats all for now.