Before I share this - let me say that God is God no matter what. And He alone is worthy of all praise and worship. I trust Him with all my heart. But I am learnING to walk this life of faith. Not there completely yet. Just learnING.
I wish that I could say that all things are good all the time. But, in honesty I cannot. I can say that God is good all the time, and that all the time God is good. That's the honesty of this life.
The life we are now living is not an easy one. There are many moments of discouragement and frustration. Many thoughts of "is this really worth it?"
PD dialysis is the easier of the dialysis choices. But don't misunderstand - it is NOT easy!!! There is more freedom with PD than with hemodialysis. But there is less freedom than what we have ever lived under before.
A typical day's schedule with PD?
Beginning somewhere between 8 - 9 a.m. Get Rick's vitals - weight, blood pressure, blood sugar, temp. Record everything. Wash hands. Get supplies laid out and ready. Wash hands again. Open bag of solution. Hang it on the pole. Add new cap. Wash the end of his catheter. Attach to the pole's organizer. Rick opens the clamp. He drains out around 2500-3000 (+) ML of the solution from the night. Takes around 15 minutes to drain. Then, he switches to fill. And another 2500 ML fills the Peritoneal cavity of his abdomen. Takes around 15 minutes. Wash hands. Unattach him. He is finished. Empty the drain bag into the toilet. Clean up the room.
We now have about 4 hours ...
Then, between 12 noon - 1 p.m. we do this over again.
Another 4 hours ...
Between 5 - 6 p.m. again ...
4 hours ...
The last exchange of the day is right before he goes to bed ... somewhere around 10 - 11 p.m. Which has proven so far to be the hardest one to do yet. We are both exhausted by this time, wanting only to go to bed. Not sit in the room for 45 minutes doing an exchange!
The 4 hours between the exchanges are spent working on paperwork and records ... learning the new dialysis diet ... struggling with our limited bodies (still in recovery from surgeries) to clean and maintain a relative clean house ... phone calls with doctors, hospitals, labs - trying to set schedules for appointments and tests, also trying to work out payment plans on the bills that are quickly piling up, but the money isn't. (Rick is still on worker's comp - which is proving to be about 45% of his weekly normal salary.)
We try to stay in touch with family and friends. I struggle to keep up with this website. Working hard to stay with Facebook.
Rick's dad comes down every day or every other day and helps to bring in wood for the wood stove and fireplace.
And then there are the appointments with the doctors, nurses, hospitals, tests, labs, and rehab that must be kept and worked in during those 4 hours between exchanges.
Oh, and an occasional trip to Wal-marts for the needed groceries.
Which all leaves precious little time for "us" or "me-times".
It is a difficult journey. One that we are told will get easier as time goes by. Course, right now it is hard to see "easy" in any thing.
Rick's right hand/arm is still not cooperating with all that he needs to do and wants to do. Jeff (physical therapist) says that he is doing good - but it becomes harder to hold on to those words of encouragement the more that is obvious to needing done around here.
I am still under restrictions due to the Uterine Cancer surgery. Not just a "simple" hysterectomy. It was ore extensive and invasive than most people realize or understand. Sigh.
Also fighting the cough/congestion/crud that so many are fighting this winter so far. Having to be careful because of compromised immune systems. And not wanting to take what we have had and spread it around either.
And the emotional/mental side of it all is one of struggle and frustration.
We feel isolated from the world around us.
Friends and families have their lives, their set of schedules and routines.
Because of our limited mobility and time, we don't get to get out and about as much as we were doing before all this. Perhaps that will change as the seasons change from winter to spring, and as more time doing all this goes by.
We find ourselves frustrated and discouraged with our bodies. A LOT!
You don't expect to be early 50's and so "crippled" or as an "invalid" - yet, it feels like we are sometimes. (More than we would like to admit. Sadly.)
You wonder if there will ever come a day that you actually look forward to again.
You wonder if there will ever be a day that you feel good again.
You question your sanity in the dark hours of the night.
You would like to scream against the loneliness of the days - but then, who would hear? And you are too tired to scream if no one hears. Sigh.
I fight against the worries and fears of twinges and pains. I have never had cancer before. So are these pains and twinges "normal" for my body? Or are they a signal to something being wrong? And although the prognosis was 95% cure after 5 years ... the 5% haunts and torments me. I find myself wondering how many days into those 5 years I am - and will the worries and fears some how magically lift off of me at that 5 year mark?
If cancer has left my body - will it ever leave my mind? my life?
We know that there are others going thru the same struggles as we are. And that there are those who are going thru even worse struggles. We see-saw back and forth between having compassion for all of them - and not wanting to acknowledge them. As humans we want to think that what we are dealing with is the worst, that nothing else compares with the heartache and depression we are facing.
God has been so good and true to His promises thru all this past year, and as this new year begins. We acknowledge that. And we count our blessings - not as much as we should. Which we are trying to change.
There is NO WAY we could make it thru all this without God's Presence in our lives, and His promises in our hearts and minds. Because it is the hardest journey we have ever taken - WITH Him!
I am reading thru Isaiah - and claiming promises after promises!!!
Also reading thru the devotional - "Jesus Calling ... Enjoying Peace in His Presence". I would recommend this devotional to everyone!!! It has changed my heart and my life.
There are moments that we really are "ok" ... and then, the OTHER moments.
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So why "Scattered Feathers" ? ? ?
You can read it here