Saw the neuro today and loved him!
Unfortunately, he isn't the dude I need.... sigh.
Looks like the pain is none other than arthritis!
So, now we get to try and get in with the rheumotologist next week.
Ever have the feeling those hamsters in the wheel have the right idea?
To be honest, I've been away for several reasons, but the biggest being that I have not had anything fun or witty to say.
My life currently revolves around hemo and bedrest, add a dollop of severe joint pain and there you have it.
I haven't wanted to be a crybaby, so I just went offline for awhile.
Something seems to have triggered when I was in the hospital a few weeks back, causing severe inflammation in all my joints. The catch-22? Any type of anti-inflammatory will kill off any remaining kidney function I have, little as it is.
We go to see the neurologist tomorrow, so the hope is she has some miraculous ideas to try. Cause this pain thing is affecting every single aspect of my life.
Right down to not wanting to sit at the table for dinner because of the excruciating pain caused by standing up to get in the wheelchair.
All two steps of it.
We are supposed to drive 3 hours to my mom's for Thanksgiving next week, and we are in the process of trying to figure out that will work.
I know I say this alot, but if you could be praying that this is over soon. Reallly soon.
On the other side of the coin, we may be listed with OHSU in a couple weeks. Which means we can start testing living donors again. By the end of the year.
So I thought I would ask rthat if you need, or know of someone who needs prayer- leave it in comments and let us all stand with you.
We are nothing alone. We are evrything together.
Being chronically ill, well, it's tiring. Hard, stressful.
When you have kids, it's harder. Especially when they are old enough to "get" it. You see the fear behind their eyes, hear it in the questions they don't ask, the unexpressed anger. More crushingly, you see it in the way they seek to do everything for you, like you're fragile glass that may shatter at any moment, leaving them alone with no notice if they fail.
Your marriage is strengthened in so many ways, but strained in so many others. All those dreams, plans, promises made in long walks and dark nights- will they still happen? Although in our heads we are told that no one is promised tomorrow, our hearts refuse to accept that. We want those years, long, loving, memory-filled moments that others get without a second thought.
I mean, seriously, do you know how lucky you are to live in the world of not thinking about these things?
Add to that that financial strain that medical bills bring, the monthly decisions on who gets what and who doesn't, whether you can get your kids that winter coat or Christmas gift, will you have gas at the end of the month to get to that transplant appointment 4 hours away?
It makes you just want to turn off the lights, curl up in the fetal position and cry.
Welcome to our few months.
We've been doing alot of talking lately about our situation, both amongst ourselves and with the kids, and trying to work together as a family towards a long-term, manageable solution.
The kids have been home all week with various illnesses. I cannot tell you how much we have enjoyed having them here, enough though they are sick. After homeschooling for so long, and the move to public school this year, we have been grieving the time we have with them. Especially since we are facing 16 and 15, and they will be gone soon. Off to their own lives. So, here's to that small blessing and the three weeks more of vacation we have with them starting Monday.
On the home front, we are lucky enough to where John and I have gotten good at "if one is up the other one isn't", so at least we both aren't curled up in that fetal thing at the same time. It does help abit. We have had so many discussions, planning sessions, griping sessions. I've sat in the parking lot of the store while he was grabbing some things we need, and bawled my eyes out. More than once.
The past two years have been a test of faith. We moved to Arizona, prayerfully confident in our choice, only to find that the medical care was not what we needed. And it practically cost me my life. I am confident that because of the care I received, I lost quite a bit of time with my family in the future, unless things turn around. Talk about questioning your decision making abilities.
The move here has been good. The care is spot on, and I'm having a few more good days than bd now. The last week has been ok. And ok is a step up from where we've been in a long, long time.
That being said, we know I'm losing my residual kidney function in the remaining right kidney and need a transplant while I'm healthy enough. The reality that it may or may not happen is beginning to really settle in. In the past nearly three years, I'v been Pollyanna. No doubts for the most part, just a momentary weakness here and there.
Now, however, it's becoming real. So very, very of you have lovingly offered to be tested as a living donor, and each time I've received an email back or called Denver about testing results it's "No Match" over and over and over again.
Over 20 times right now.
I'm losing hope that this will happen.
I'm weak, scared, and guilt ridden that I'm not the "super" believer all the time alot of people think I should be. I get private emails from readers with encouragement and love and uplifting commits.
I need it. I cling to them.
But, sometimes I get resentful. I get ugly inside. I think "I'm 43. This has been going on for over 40 years. For the love of all things out there, it should be OVER by now."
The living donor service people constantly bombard me with emails of a spouse donating to their loved one, a coworker donating or a stranger donating .... it seems so easy for them. Why have I been told no over 20 times. What makes me unworthy? What are my children having to think about important times in their lives I may not be there? Why is my husband wondering how he will possibly be a good single dad?
It reaches a point where you can't pray. The words you said over and over and over again for months, years, seem hollow and useless. How do I tell my children to believe when they see they fear in my eyes?
I'm working through this. The depression that comes with it. But it's a painful process. And I can't say when I'll be out of it. Or who I will be when it's over.
I hope I'm stronger, better, healthier and healed.
When I named this blog, I chose the name Living In Grace because it's by God's grace I live.
That right now, is the thing I will continue to cling to. Even when I find it hard to believe.