the little engine runs out

[breezysummerday]

 

It's been almost a year since Ray's 'bam, you're in the renal unit'.
Since then he has been infiltrated at least 7 times.  Has had two
permacatchs, 2 overnight observations in the renal unit, toxicity
with collateral damage from gentimycin...2 different fistulas.
 I should be having a burst of energy from the extended
sunlight..all I want to do is sleep......arrgh!
..my little engine is running outa gas....oh yeah, his unit
charges $1800.00 per treatment.....what a
frickin joke..........I'm tired and angry....there is no more 'honey do list'.

 

[Chris]

You need to rest too. Not sure how, but take a rest and relax by doing something you want to do and as long as you want or can do.

[Sluff]

You have a tough job Breeze, Like so many, the attention is always patient orientated but it seems the caretaker/Spouse or significant other gets the brunt of everything. It really is a thankless job. I really feel for the ones who are alone when going through this too.

You do need to take time for yourself no matter what the cost.   

[twirl]

what is an overnight observation at the renal unit

please take care of yourself

my big engine would run out if I had all to do that you do

[paris]

Breezy,  Women try to do it all, and we can't sometimes.  We are "fixers" and "problem solvers" and there isn't enough time for ourselves while we are caring for others.   Is there anyone who can give you a hand, even if just for an hour or two, so you can unwind?   What can we do to help?  It is hard to ask for or accept help from others, but maybe now is the time.  I am sorry for all that is being put on you.  It is all so overwhelming and never ending.  Wish I could help.  Keep posting and let us know how you are.  Do something nice for yourselve today.   We love you,      

[kitkatz]

Take a deep breath today and breathe through what is going on.  Do something for you.  Enjoy something today.

[breezysummerday]

..allright, pity party semi over.
I should expand on his gentimycin toxicity.
After his last permacath infection, ray has developed
Acquired Bilateral Peripheral Vestibular System Impairment.
In other words, the antibiotics to help him heal has damaged
his balance system.  He walks toe to toe, like charlie chaplin
in the old time movies, with a cane.  He cannot bend over
or move his head left to right without losing his balance.
If it's one thing, it's been another.  Argh, I can handle a lot
of crap that life throws at me, but this 'bump' has been rough.
I have to make sure he wears a belt all the time so I can grab him
when he starts to fall.  goddamn it..life has been going so well, then
this shit snuck up on us.  At dialysis, they were telling Ray that
this will pass ('get use to dialysis, you will have ups and downs').
And Ray was saying that something is wrong and no one, including
myself understood what was happening.  A good man down in the
prime of his life, regardless of dialysis.  Turns out his neph never did
a 'peak and trough'.  Or in other words, test blood serum levels that could
prevent 'over dose' of gentimycin.  A simple, routine test that was not done.
thank you for understanding,.....debs   

[okarol]

Awww man - that really does suck - I am sorry breezy - please try to get some help or rest - BIG HUGS here for you.     

[MandaMe1986]

I am sorry it has been so hard. You do really need to get some rest in too. I know its hard when your mind is going in a million deffrent dirctions at once.  Maybe you can treat yourself to a massage or something  ?  Something to help you relax when you can't yourself.  And are you paying the full $1800.00 a treatment?  I really do hope not! 

[Chris]

Idiot doctor! If he or she can't handle patients health correctly or handle a large number of patients, get out or get help!

Sorry this has happened to Ray and you Deb. Hopefully he will regain some balance back if possible.

[Bajanne]

So sorry to hear what Ray has to go through.  So many times we have to conclude that 'common sense is not common"
But listen to what the others are saying - you need to take some time for yourself as well.
We are here for you.   

[Yvonne]

Some of these Doctors make me so mad, they treat you like a Ginny pig.  At one time last summer John was put on an antibiotic for a urine infection. He went out in the sunlight a couple of times and broke out in these big red sores on his face and arms, areas that had been exposed to the sunlight. It has never been noted on his notes which one caused it, it's taken almost a year for the scares to go.
Now if ever he needs to have an antibiotic while he is on it he stays indoors just in case.  Yvonne

[mcmkids]

I am so sorry that all of this is happening. I know that it is hard enough getting through daily life HEALTHY, let alone trying to do it while caring for someone else. I know that everyone tells me that I should take time out for myself (yeah, right), I have no free time left and no extra money. This message board is a great way to get stuff off of your chest and to realize that you are not alone. Keep your chin up!!

[The Wife]

Ah, sweet lady.  If only there were a way I could help you.  Perhaps, I'll just sit and breathe with you.

 

[G-Ma]

 

[pelagia]

Breezy - I know from your posts that you are a joyful person at heart.  I hope there are ways to find joy even through all the tests and trials.  It's more than any one or any couple should have to bear.  I wish I could share a bit of the burden for you for an hour or a day.  I would if I could. 

[breezysummerday]

Thank you all for the well wishes!

Mentally, I'm 'back on track'
Ray continues to weeble wobble.
Some days are worse then others.
Fortunately, he is seeing a balance disorder specialist
who is helping Ray deal with gentimycin toxicity.

My new term of endearment for Ray is "wobble"