And Now, I Breathe.....

It has been a long, hot, emotional summer.  Occasionally touting bouts of extreme depression.  Perhaps I am feeling the martyr's part, but I feel like I am holding up my husband .. a lot.  And it has gotten to the point where I feel like I support a ton weight over my head all the time.  I am probably not being fair but Mac is emotional high maintenance at the best of times.  Lately, I have been feeling completely empty.

Then a miracle happened.... school started.

The kids aren't there yet.  These are the days of teacher meetings.  A seminar is going on this year to take the place of actual prep time.  Something the principal pulled out of his ass, that is completely opposite to what he pulled out of his ass last year.

Some things don't change.

We started our school year schedule.  We got  up.  I made coffee.  I packed up his day's prescriptions.  Fed him breakfast.  Made the bed.  Sent him out the door.  Then for some reason... I kept crying.  I don't know why.  I haven't been able to cry for years now.  It's not like I was sobbing or anything.  I just couldn't stop leaking. I tried to get some things done around the house.  I wasn't accomplishing much.  Just puttering about really.  Couldn't concentrate.

Then finally, I went to see the horses.

I took out a halter, rope and my stick.  We played.  I rubbed on them.  I scratched manes and ears.  They backed.  They turned.  Chloe circled but that wasn't what I wanted.  That's okay cause they cracked me up.  Which was another miracle, because now, I can breathe.

Louie

Raves About My Ranting

That was a line from an old M*A*S*H episode.  Hawkeye said that he got raves about his ranting.  It would be nice... to get raves that is, but today I don't feel like I can hold it in anymore and I have no doubt that my rant will not be rave worthy.

Last wednesday was yet another trip to Iowa City to see the oncologist/ transplant DR.  Mac is still on an every month schedule as a result of the flare up of the graft -vs-host a.k.a. rejection.  This time the physician's assistant mentioned that perhaps he needed to think about getting Social Security.  Said it like all you need to do is go out and pick it up like a sunday paper.  Irritated me!  Then because they are soooo fucking helpful, a social worker was sent down to talk to us.

When the Dr. came into the room, Mac asked her about her thoughts.  She wasn't going to say...asked him what he thought.  He said he didn't know.  Didn't know what to do until he knew what she thought.  Again the Dr asked, "Well, what do you think?"

This was not exactly helpful.

Finally she did cough up that the statin medicine that was started as a result of the heart attack could be causing the problem.  This seemed like a good thought as his other GVH symptoms had improved.  So, we are left hanging.  We do not have a diagnosis for what is happening in the liver.  Last month the paperwork that was sent home with us said they thought it was CMV (cytomegalovirus).  This month the Dr. was totally non committal and the PA said she thought it was GVH in the liver, which you really, really don't want.  In the meantime, social security  is hanging over our head like a toxic cloud.  We were told to just "go ahead and try for it and see what happens".  How's that for brilliant advice?  They have no definite diagnosis.  They didn't give us a form or letter stating medical necessity.  The social worker didn't know jack shit about social security.  All they gave us was dread.

Mac looked up some numbers.  Possible amounts.  We are currently running about $3500. short each year.  We make it by trying to wisely use our tax return, hay money and the kids help us out more then kids should have to.  If things are as bleak as some think, then we will be even further behind on Social Security.  If that is the direction we travel, then there is a good possibility that we will lose the little farm.

I keep thinking about my extreme survival measures... buying a lotto ticket.  It hasn't worked yet.  Dammit!  The other fall back plan was to beg help from Ellen Degeneres.  These are my ridiculous thoughts.  I am taking small comfort in them.  I don't know what else to do.  I am finding no hope, no plan based in reality.  There is nothing concrete to stand on.  My great hope has to rest in that the doctors know nothing, but my fears are also that the doctors know nothing.

For right now, we have decided to ignore them and to just continue.  We will put our heads down and push our shoulders to the load and do our damndest to keep living.

Louie

Heat and Whining

I looked at the weather report last night.  I don't know which is more depressing, another week of near one hundred degree temperatures, or knowing there isn't a damn thing I can do about it.  There seems to be no rain in the forecast, well none in the midwest anyway.  I've been surprised at how well the garden is doing despite the heat.  We are getting tomatoes, cucumbers,  peppers and zucchini.  Later we will have brussels sprouts and kale.  It isn't enough to keep us alive this winter...... but it's a start.  The broiler crosses are ready to butcher, but it is just too hot.  We will be butchering out doors and I fear that we won't be able to get the meat iced fast enough.

This is terrible.  My mind rages on, but my body can't accomplish much in these temperatures.  We tried to get out the other day.  We are having cabin fever something awful.  We went to a lake and it was so nice.  So nice in fact, that Mac didn't want to leave.  We got too hot and now we are ill.  Nausea, lethargy, and a piss poor attitude.

This upcoming weekend I am supposed to be able to get away to a Parelli tour stop.  Some time to indulge my passion for horses.  I am trying to figure out if I can scare up enough money.  I'm sharing a room with a friend and I can pay her back on time, but I need to scrape together enough money for gas and food.  I keep turning it over in my mind, just how cheap can I eat?  As hot as it is, would it be safe to pack food to take up?  Then there is getting everything in order sufficiently that Mac can take care of creatures while I am gone.  I'm really worried about that.  If any chickens die, I'm going to beat him with the corpse!

Sorry, it's the heat talking.  I just need to , I don't know..... rehydrate?

Louie

It Takes a Little Balance

I have been so incredibly stressed lately!  The heat wave continues.  There is so much work to be done, but it is dangerous to be out for very long periods of time.  In fact, we try to stay indoors from two o'clock in the afternoon until around four-thirty.  Then rounds are made.  Water levels are checked.  Then, drenched in sweat, we retire back inside until it is time to do evening chores for real.

I did my routine a little late tonight.  By the time the chores were done, I was well into dusk.  The sun had sunk below the horizon and everything breathed a sigh of relief.  The assault of heat was over for another day.  Sometimes Mac comes out and watches me do my chores.  He stands in the garden.  Watering plants, kind of power washing the tomatoes to rid them of buggy pests.  Sometimes he hollers at me.  "When are  you thinking of moving the greenhouse?"  I can never hear him, so what he hollers doesn't matter much.  I let him know that... "I  CAN'T HEAR YOU!!"  He responds, "I'll wait"  At least, that's what I think he is saying.

Evening is our time.  When things cool down and the world feels a bit kinder.  Mac isn't here tonight.  He is spending the night with my oldest daughter.  It is cooler there.  They have Netflix.  Here, the heat seems to be playing havoc with the antenna and we are down to three channels.  None of which seem that interesting.  Mac is getting away to have media time and I am getting away from Mac for a bit.  His large dose of prednisone has taken it's toll.  One day he wants to cry.  Another day, I want to cry and yesterday, well yesterday,  I wanted to bludgeon him.

Tonight I feel like I finally have a moment to think my own thoughts.   He is needy.  He seems to think I know everything that will happen next.... that I have a plan, and he needs to be comforted by that knowledge.  In reality, I don't know shit.  I'm following a feel and it's leading me to someplace new.  My only assurance is that I think at the last minute, something wonderful will happen and somehow, the debts will be paid, the farm will be safe.  I will no longer be tied to the railroad tracks watching the oncoming locomotive.  Mac doesn't have that feeling.  He thinks he will be dead within five years.

I just keep swimming, but it often feels like I have a drowning man clutching at me.  Sometimes it's hard.

I'll be glad when it cools down.  We'll be able to sit out in the evening.  We'll light a fire in the webber grill and watch the fire.  In the background are the fireflies, adding their own dimension to the moment. That's the thought I have tonight.  My calming thought.  Certainly not the thought I had yesterday.  Yesterday I went outside to have an onslaught of cussing that would make any sailor proud, regardless of nationality.

Tonight I have my calm.  I have a good book.  I'm trying to regain my composure... my balance.  right now, I love my husband again.... absence makes the heart grow fonder.

Louie

Too Damn Hot!

If you ask yourself how hot is too hot, then the answer is 95 degrees fahrenheit.   That is 95 without humidity.  With humidity, the answer would be 88 degrees.  I have had too much time to think about this.  It seems like it has been hot for far too long and it seems that the weather is going to hold for now.  The heatwave will continue.  The worse of it is that the heat is keeping us indoors.  It couldn't have come at a worse time.  Mac had begun to go out.  Between the medications and the chemo, he had become very sun sensitive, but this summer he had been going out.  He had started doing things, puttering about in the yard.  The little farm had finally started to take hold of him.  I thought that maybe, all of the damage to his spirit caused by the leukemia and the medical treatment, would begin to heal.  But now we are having to take refuge from the heat.  Both of us longing to be outside... both of us wanting to dig in the soil and to build things.  But we are stuck in the house, avoiding the heat and getting cranky.

My less then stellar attitude at this point, makes me wonder about next year , and the year after that.  I think about  global warming.  Wonder if we are seeing the beginning of  our self induced apocalypse.  I want to plant as many trees and shrubs this next spring as I can manage.  I wonder if they will just burn up in the possible heat and drought, or maybe, just maybe, I will be doing something important to avert what seems to be an inescapable future.  I think I am the perfect person to face such problems.  Realistic enough to acknowledge that it exists, but optimistic enough to believe I can make a change.  Stupid enough to believe that I can even influence some other people to also put forth an effort to create a better world.  So, are you all listening?  Plant something!

I'm actually stupid enough to think I would like to make a double order of trees and shrubs from the Department of Natural Resources next spring.  I don't know how I would manage.  That would be a thousand trees and shrubs.  That would be a lot of work.  A lot of money.  Probably around four to five hundred dollars worth of planting material.   But wouldn't it be so incredibly amazing if I could pull it off?!    Makes me feel jazzed just to think about it.

Then I think about my physical limitations... then I get a bit depressed.  All  in all, I think too much.  I want to be outside.  I'm tired of being cooped up in the house!  Too many mood swings!  Too damn hot!  There is nothing for me to do but to go make pancakes for breakfast.  Pancakes always make a person feel better.  Pancakes!  food for the apocalypse!... or possibly, hopefully, not.

Louie

Survival Strategies

It is so hot here.  Yesterday, according to channel 13 news, the high reached 111 degrees.  We made it through without air conditioning.  Maybe we are a little tough, but mostly we are cheap.  We have begun our survival strategies.  We begin with our morning coffee.  Coffee is brewed and then poured into an insulated carafe and the coffee maker is turned off.  One load of clothes per day, which is washed in the early hours, when the house is still cool or the washer is turned on just as we go to bed.  Then the clothes go out on the clothes line.  Same with the dish washer.  It is only used when full and it is turned on as we go to bed.

We open the windows at night when it is cool and close them up about eleven in the morning.  The only exception is the upstairs western window that has a fan placed to blow warm air to the outdoors.  Now to confess... we knuckled under today.  We put in the window air conditioner in our bedroom.   I wish that I had awnings over the western windows, but I don't.  So to help the air conditioner not work so hard we put aluminum foil in the upper portions of the windows.  Shiny side out to reflect the sun and heat from the house.  It looks terribly trashy but it works great.

We don't cook in the house if it can be avoided.  We now have an outlet in what will be the outdoor kitchen so we can move a crock pot out doors or the small counter top oven.  We grill a lot.  Even veg and breads.  The pre-made pizza crusts drizzled with olive oil and topped with italian seasonings and a little mozzarella cheese makes you forget that you are living with austerity measures.

Yesterday, while at the doctor's, Mac and I had a conversation.  One we should have had sooner.  With this latest set back, the heart attack and the flare up of the GVH, he is convinced that he will not survive until retirement.  He doesn't think he will survive another five years.  Not sure what to do.  I know that I need a survival strategy that I am not yet equipped with.  I think it will take more then aluminum foil and pizza crusts.  I guess we will play it by ear.

Louie

4:41

I haven't had a panic attack about money for several months, so apparently, I was due.  This morning at 4:41 I awoke with a great deal of acid reflux and a cold sweat and wondering how in the hell would I find $1200.00 by the end of September.  I still don't know how I will make that work, but things seem less frightening by the light of day.  Other things take precedence.  Weeding.  Feeding.  Facing down the heat wave we are in right now.  Making sure the chooks have enough water.  I'm worried about one of the broiler hens.  She has stopped walking.  This is an inherent problem with broilers.  They have been bred to grow so fast that their skeletons don't always maintain enough strength to hold up the weight.  I don't know if I should let her go for a bit or if going ahead and butchering her would be the greatest kindness.

My mind can't stay on any one worry for too long.  There are just too many of them crowding around, pushing for attention.  Sometimes I feel as if I am in a game of checkers with God.  I think I am moving along well.  I think I will make it to the end and be able to get my piece kinged.  I will acquire what I need to navigate the board more easily, the strength to overcome my obstacles.  But it doesn't happen that way.

I don't want to think about it.  It is far too depressing.

Tomorrow Mac goes to see the transplant oncologist in Iowa City.  He is being kept on a monthly schedule for now.  It is horrible.  Stressful.  Makes me wake up in the night.  Makes me angry.  I thought I had finally gotten past the rage.  It seems that it is just under the surface.  I did a fair amount of cussing today.  As always we will go to Iowa City and then crash for two days afterward.  Then I will shove myself back into my life.  Get back to worrying about weeding and feeding, and occasionally, I will wake up at 4:41  in the morning and wonder how in the hell am I going to make it all work?

Louie