HiCy, rebooting Steph

HiCy Journey

Tuesday, March 30, 2010

March 30, 2010
Let me start by saying sorry to all the ladies in my bible study group...yes I put down the wrong URL for my website! But, I did put down google rebooting steph...so, I'm hoping you all find it! LOL I still have some brain actually working! YAY!
I have come to the realization that I am no longer alone in this! Yeah, I know I've had friends here, but not here in Arizona, see frequently kind of friends. It's weird to walk up to someone and have them ask if your okay, and of course I answer in my little lying way, "yeah, I'm fine...why do you ask?" Because of the way you said you were feeling yesterday. Now I'm wondering how the heck does she know how I was feeling yesterday? So, I ask. I know you were feeling dizzy and stuff...I read your blog.
Oh, yeah, I can't play the I'm fine card anymore! Now that kinda stinks...but not really. We're all suppose to let the ones that care about us most, know how we really feel, but honestly, we usually don't burden anyone with our own reality! Well, welcome to my world, because all the gory details of my glorious disease are pretty much here for the reading! Haha...I hide things pretty well, huh??
Well, the acting is over and everyone is welcome to help in anyway they can. Praying counts as helping, by the way!!
So, on that note, yeah, I feel like crud, pretty much. I am getting my daily MS stuff back...wow, that Tysabri was awesome now that I am starting to feel all the things it controlled! I have some new symptoms too! YAY!(sarcasm is a good thing). I knew about them though, from my last attack, so no biggy.
My stupid hands are shaking like crazy. I can't move them correctly...makes me mad! You'd laugh at me typing this...annoying! I can still drive, which is a huge thing! I'm not having an attack...just symptoms. I have this excruciating pain in my neck...and my chest is tight again...boohoo...actually, Advil liqui-gels are an awesome thing!
My thoughts are really scattered the last two days and I have to really take my time and think about what's being said. Another annoyance...such is life. I just have to keep reminding myself, I am on a journey to rid myself and hopefully others of this aweful disease. I am privileged enough to be one of the ground breakers for a treatment that may someday lead to a cure for MS! That is a pretty huge thing and I am so very grateful to have been offered this opportunity!
Thank you everyone for being a part of this! You too, are part of history by being my strength and companions through this!
I love you all!

Monday, March 29, 2010

March 29, 2010

Interesting information to share today. I have become extremely fatigued and dizzy today. Kind of have a scattered brain feeling. My thoughts are getting scrambled and I can't seem to keep my mind from wondering off subject during regular conversation.

This is obviously my body reacting to the lack of medication in it. The Tysabri is almost gone and therefore the effects are wearing off too. I will be calling to see if I can take Detrol LA and Ambien CR, hopefully I can take Dramamine and Advil for the occasional spins and pain. I knew this would be the hardest part...being off all MS medication, I feel vulnerable, but I am doing deep cleansing breaths to stay calm.

2 more days until testing. I can do this. Hopefully only 5 more weeks before HiCy. Keep those prayers coming :) !

Saturday, March 27, 2010


March 27, 2010

I received all the prescriptions for tests! I get to have my heart, my lungs, my kidneys, my liver and my blood tested, gotta make sure I'm healthy enough to drop my white blood cell count to zero! Haha...I am so excited!! Got my doctors appointment for April 1st! 5 days away! Not bad! So, we will see what the results say, and then, hopefully be on our way, back to the Windy City!

I actually stayed in Chicago 4 years ago at a really nice hotel. I had an exacerbation (ms attack) and flew home barely able to walk! Jessica started 3rd grade with her Mom unable to drive or walk without assistance! Isn't it funny how I'll be in Chicago for the treatment that stops this from happening again! The Lord works in mysterious ways! Kinda creepy...but AWESOME!

Wednesday, March 24, 2010

March 24, 2010

Talked to Corey Woods, the head nurse at Rush, today. She is getting prescriptions together for me to have some of my testing done here. I will then go to Rush to meet the oncologist, Dr. Shammo, and finish testing. Once that's all completed a date will be set to receive HiCy.

Makes you wish you lived in Chicago...totally kidding, I love Arizona. So, now we must coordinate another trip to Chicago and see how it all pans out. I will let you know how the testing goes as soon as I get results.

Tuesday, March 16, 2010

 March 15th, 2010


So, I'm getting ready to leave, to go to my infusion center to get Tysabri, when the phone rings.  It's Dr Stefoski calling from RUSH, to let me know I have been excepted and Corey (the head nurse) will be calling me to get my tests underway!  I did not go get my Tysabri!!!  
He also let me know it would not be 6 months until I get HiCy...the Tysabri is completely out of the system in 12 weeks!  I am so happy, but nervous too!

I thought I was going to have 6 months to get everything ready and prepare the house and get things organized.  Seems I don't have quite as much time as I thought!  So, I will just do the best I can with arrangements, I hope everyone pulls their weight, because I will have no control over it.  Putting things in God's hands is awesome...it always seems to work.

Here I am about to rid my body of a disease that has controlled my life, in some manner, for the past 24 years!
Thank GOD!  I am so ready. 

Wednesday, March 3, 2010


March 3, 2010
Back from Chicago. RUSH was amazing! What a huge place! Dr. Stefoski was very nice and went over everything. My 1 hour appointment was 3 hours! I had no active lesions on my MRI and he said all my MRI's from the past 4 years show no active lesions! Yet, I am steadily getting worse!

So, he had an MRI of my thorasic spine done, to see if the activity is lower on my spine. He took 7 tubes of blood to test for other things. Now we wait for all the results to come back. Hopefully we will hear on or about the 10th! Cross those fingers!