impatiens paucidentata by Guérin Nicolas

I am impatient.

I suspect many people think I am very laid back and serene – and I am in many ways.  But once I’ve made a decision or a plan, I want it to happen NOW.

We have decided to switch the hubby from hemodialysis – which seems to be causing all sorts of problems with his blood pressure, clotting, heart, intestines, anemia – not to mention that the fistula surgery did not take.  There are other reasons, too.

So we are going to go to home peritoneal dialysis.  So I want to do it.  Now.

But nothing is NOW with these medical folk.  Three or four weeks, or longer.  He has to be cleared by the cardiologist because of the heart problem, which was caused by the toxins in his blood getting so high when his kidneys completely failed but we could not get him in to the doctor more than a week after it became clear to me he was dying.  THEN it was RUSH RUSH RUSH to the hospital RIGHT NOW (as if I had not been calling every day for two weeks saying – he is failing).  *rolling eyes*  The heart problem vanished the moment dialysis began.   We all know it was caused by the kidney failure and that it was resolved by dialysis.  But the doctors have to cover their ass – and be sure to share the Medicaid wealth, too – so nothing will do but we get cleared by a cardiologist before we go any further.  THEN we’ll need the new catheter – out patient surgery.  THEN we have to wait three or four more weeks for it to heal.  THEN we have to be trained to use it.  THEN …

Meanwhile, not to whine, but the financial situation truly is dire.  Hubby has not worked since March – when the first fistula surgery rendered him unable to use one arm.  Can’t cook with just one arm in a commerical high speed kitchen.  But no social agency seems to think that is a disability.  His boss did.  He did.  He had could not do his job and had to  quit but no one will consider giving us aid until dialysis starts. Call us when you start dialysis was all anyone had to say.

We did.  Oh, now that dialysis has begun they will consider it.  Tap.  Tap.  Tap.  Yep.  They’re considering it.  Tap. Tap. Tap.  They are gathering information from all his doctors – just in case he was trying to fake complete kidney failure (which is diagnosed by rather irrefutable blood tests) and is only doing dialysis for the fun of it.  Tap. Tap. Tap.  “OH” all the Dr.s told us – “Disability is automatic for ESRD patients”  He has been diagnosed with ESRD since January.  It is May.  We don’t have any disability.  Tap. Tap. Tap.

The social worker finally got around to doing his psych evaluation at the dialysis clinic.  When she started asking about our financial situation – she ended up with her jaw on the desk.  Picking it up she asked, “What are you living on?”

A wing and a prayer.

I got the Census job – and was able to work four days over three weeks between their needs and his medical needs.  I just called and I still have the job – they just don’t have any work.  However, because I am down as working full time for the Census, I don’t qualify for any aid.  I have no income.  But I don’t qualify for any help.  Hubby qualifies through the State for… a bit over $200 a month.  This will not actually pay for all the gas to take him for dialysis 100 miles away 3 x a week  – just dialysis, never mind the doctors and surgeries and anything else.  We are getting a bit over $300 in food stamps, too.

Don’t get me wrong, I am more grateful for that little bit of help than you can imagine.  I’m even more grateful for our roommate/landlord – who hasn’t gotten a dime towards our half of the expenses here in months.  He isn’t rich.  In fact, one reason we are here is because he needed the money.

When hubby had to leave his job – just as we got his last paycheck I got a job cleaning at a motel.  While doing that I got the Census job and just about the time the motel decided they didn’t need me anymore – I got to work a couple of days for the Census.  And then one day the next week.  And one the next week.  Literally the day before I got my last Census paycheck this week, we got the news and the first payment from the State.  We can keep getting him to the doctors and dialysis at least until the end of the month.  The Universe is taking care of us – but it is close to the bone.

I know the Universe will provide.  I know my vision of a life where we can pay our bills and travel and be free again without a daily doctor or dialysis appointment will come.

But I’m impatient.  I wish it would happen right NOW.

I’m sick to death of just barely surviving.

Hubby feels much better.  That’s the most important thing.

Quite likely I’ll get another 20 years or so out of him if we can get everything worked out.  Who knows, in 20 years they might be cloning new kidneys from your own cells so you don’t need all those anti-rejection drugs or waiting for a donor – or maybe they’ll have some micro-dialysis machine they just install right into your belly to work just like real kidneys.

***I wonder how on earth people who really are single, who do not have family or friends who can or will support them manage to survive at all in this kind of situation?

*If you’d like to help there is a donation button around here somewhere. Or you could shop on my Squidoo lenses, or at my Zazzle store.  You could use and share my , free public domain clipart, the fairy stories at demented-pixie.com.  One note – don’t bother buying my novel – the publisher swears not one single copy has ever been sold and pays me no royalties whatsoever.  Most of all – keep sending your good thoughts, vibes, prayers, etc.

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