SPS Update- December 2018

For those of you who are unaware, I was in the ICU at UPMC Passavant for 32 days and was discharged December 7th. My family has managed to load up a lot of our lives to temporarily relocate to Baltimore so 1) my specialist can tweak my medications around and 2) I’m safer here than in Pittsburgh if something does go wrong (and well, reality check they have been going wrong, so this seems safest.)

My mom and I will be here full-time with my cousin. Evan will come down when he isn’t working and my dad will come down when he gets a 3 day or more streak of days off. It’s unfortunate that he will be working over 200 hours in January, so I’m not really sure how much we’ll see him down here.

While I am absolutely frustrated, angry, and hurting… you name it, that my jaw, fingers, hands, are in constant spasm/some degree of contracture and I’m 100% feeding tube dependent, I am absolutely stunned by the amount of support we have had from a lot of people. I think I can speak for my entire family when I say having a place to stay for free as long as we need to is a HUGE financial burden off us; having a trailer to move beds down, furniture, kitchen supplies, etc. helped bunches; 24/7 help for my mom (especially when my body goes into crisis mode and I’m rendered incapacitated).

I could go on and on about all of God’s BLESSINGS. First of all, my cousins. They’ve been a tremendous help with moving in. Insurance coverage of my hospital bed, feeding tube pump, tube formula, and the NJ tube (the tube on my face that goes to my intestines) that has kept me alive since November 8th when it was placed. We have a love/hate relationship. On the plus side, it pumps my nutrition and hydration into me, allows my oral medications to be given. On the hate side, it’s quite irritating to my throat at times or when it gets pulled on as it is attached to the middle of my nose with a string that will hurt if pulled on.

And most importantly, my family. I know there are families all over the place that relocate for medical care, but you never think that the city whose medical centers are held in the highest regard by other major medical centers like Vanderbilt, Northwestern, and even some long shots like Baylor, will fail you so badly that it comes to this.

Getting to Baltimore was an adventure, because I was not allowed to sit in a chair until the day before discharge and I knew that I couldn’t safely sit in a car for over 4 hours with my other conditions. We converted the back of one of the cars so I could lay down for the drive, because someone HAD to get bacterium in their bloodstream the day before the original move-in day. 🤦🏼‍♀️🤷🏼‍♀️

So now we are in Baltimore, 15 minutes from Hopkins, and turning this house into our home. We hung the first of the pictures on the wall and we will likely set up our Christmas tree when the 4 Bayers 🧸🧸🧸🧸 are back together again. I’ll do my 5 day course of IVIG here and my dose 2/2 for this 6 months of Rituxan, as well as go to see my doctor, who is squeezing me in the first time before Christmas. And until then, we keep praying for a Christmas miracle… ♥️❄️☃️🎅🏼

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