In the quiet.
And I like it.
I know there has been an absence of posts from me, mainly due to the fact that being stuck in bed leaves me only the laptop to use. And typing on it for any great period of time has been almost impossible from a laying down position.
So, Facebook has been my friend for the last few months.
But, I'm committing to be back in the blog saddle again...
So, the last few months.
What a ride it has been. Not really a "great" ride, but a ride just the same.
October 13th marked the beginning of our latest journey. That was the day I woke up unable to lift my head, my arms or use my legs. John got me into the wheelchair and to the doctor. "Failure to thrive" was the diagnosis and the reward was a week in the hospital. I had been on peritoneal dialysis (at home dialysis) which evidently was beginning to not work so well.
We were told straight out that I was about three days of "no dialysis" away from death.
That took us both by the throat and shook us up.
When I finally got through admissions, I was sent right into surgery to have a port put in my jugular, and hemodiaylsis was started right away, the same day. And so began my three day a week schedule with in-center dialysis. 4.5 hours at a time. Ugh.
But, I'm alive.
And that is something.
Something pretty sweet.
Since then, I have been unable to walk due to the pain in my joints. Evidently, I was lucky enough to also contract rheumatoid arthritis. Yeah for me?!
We have tried a few meds to get rid of the inflammation and the pain, to no avail The rheumotologist we have been working with has been trying to tread carefully, so that any diagnosis would be good with the transplant. After a few months of testing the waters, we may have figured things out.
We see him again tomorrow, and hopefully start on a new med that I only have to get two times a year through an IV infusion at their office. That would be awesome, since it is one less pill to take amongst the menagerie I have now. Woohoo!
Today has been a good day. I got myself into the wheel chair, alone and got a few things done for myself that I normally have to ask someone to do for me.
That is a HUGE thing.
Over the last few months, I have had to learn to be an 'asker' vs a 'doer'. That has been an immensely hard lesson for me. Every time I need a drink, a snack, to get my feet up on the bed, the lights on or off- whatever- I have had to ask someone to do it for me.
I have not really gone our of the house other than to hemo three times a week. Getting me in and out of the car has taken everyone's help in those few occasions I have tried. John has learned to physically lift me in/out of the wheelchair from the bed or the car seat.
It has been truly humbling for me, in so many ways.
In 31 days, we will celebrate 20 years of marriage, and I honestly believe that in the last 3 months we have learned more about each other and come to love one another is ways we have never done before. Every morning I get up and thank the Lord that He put this whole thing together on May 29, 1987. That first date was the beginning of something neither of us could have seen coming.
So, tomorrow is hopefully the beginning of the next step. Literally.
That I may be able to start getting Phy Therapy here at the house and start working towards walking again. That on the 20th, OHSU Says Yes, we can start testing living donors now. That the right donor will come along and I can get transplanted.
That is my hope for this upcoming year.
With every cell of my being, that is all I want.