A Remicade Kinda Day

Yesterday was my first infusion.....this morning...I feel a marked improvement!!!!

 

I felt really tired as it was infusing and then spiked a fever...the nurse called it a 'Rogue fever'  ((to my Rogues- haha, I just had to laugh- even my fevers are Rogue- just proves that Rogue stays with you forever!))   The infusion center I went to was amazing!  It was such a good experience.  I go back in 2  weeks for another dose, then 4 weeks after that.  This could be it :)

 

Big day tomorrow

I get my first Remicade infusion.....wish me luck and send a few prayers up for me :)

On the road to Remicade

Still working on the insurance pre-authorizations.....but I should start my first dose in about two weeks.   I also started a strict 30 day Paleo challenge through my Crossfit gym.....strict Paleo seems to work best for me, if only pizza and cheese would just up and die so I wouldn't be so tempted!
Onward!!!!

The Day the Tube Came Out

The tube and all of it's evilness is GONE!
My doctor heartily agreed that this was not working as we had hoped and with a firm pull, that thing was out!  It certainly was easier coming out than going in :)
So, where do I go from here?  It is on to Remicade Infusions.
I start in a couple of weeks (insurance needs to get squared away, first) and after a couple of 'loading' doses, I should get infusions every 6-8 weeks.
My doctor is hopeful that I will see marked improvement after only a couple of weeks and stay that way.
I am a bit leery, as I have heard that one before.

Paleo continues to be a big part of our lives.  I truly believe I would be worse off right now if I hadn't gone Paleo in March. 

I am trying to be optimistic, friends, optimistic indeed.

If you threaten to pull a feeding tube out...

Things get done, FAST!!!!

Now, I am not normally prone to dramatic fits to get things done, but these last two days certainly brought out a little drama queen in me.

I have been going back and forth with my Dr.'s office, the medical supply company, and my insurance company. No one was submitting the correct paperwork to get my formula authorized.  The medical supply company had already sent me two cases with no proof it would even be paid for and I couldn't keep expecting this.  So, when I was down to the wire...meaning- if they didn't send the authorization by lunchtime I would miss the cut-off for the formula to be sent next-day air.  Once I ran out....well, nothing else can be forced down the tube and actually using my mouth and throat for actual eating is out of the question (oh!!! the gagging!)

So, I brought out the big guns.....  it went a little like this.

Me:"So,  I was just calling to get some instructions"
Nurse: "Instructions for what?"
Me: "Well, your office has failed to send the authorization that was needed for the medical supply company to send me more formula.  I have called and talked to three people, who have all assured me it would be done yesterday, and it still has not, so I am going to run out on Sunday.  So when I run out....I'll be pulling this tube out and I need to know...  Is it kinda a yank, or a pulling type motion.  Is there danger of aspirating it into my lungs????  I really need detailed instructions, since this is what I will be forced to do on Sunday.  Any tips you can give me???"
Nurse: "Uh, Uh, hold on....... "

Well, wouldn't you know my doctor comes on!!!  The paperwork was completed within 15 minutes and my formula is on it's way.

P.S.  I was secretly hoping she would tell me how, so I could just go ahead and do it....she never did:(

6 days in

Well, I've made it six days.  Six looooong agonizing days....
Here's a sneak peak into what goes through my mind throughout this whole thing

"Hey...you have a tube in your throat. Get it out."
(2 seconds go by)
"Hey...you have a tube in your throat. Get it out."
(2 seconds go by)
"Hey..."

Sprinkle in some violent gagging fits and there you have it.

I still haven't seen an improvement with my Crohn's.  This makes me wonder how I am supposed to reach remission with this.  I see my doc one week from today, which is about half way, and I hope I have a big turn around by then- or this thing is outta here!!!

What goes in the tube?

Breakfast, Lunch, Dinner, Snacks and Dessert.........blech :)