Beautiful little moments

It is the evening of August 13, 2016, and Jay’s birthday.  I am watching him cooking in the kitchen, a beautiful little moment for us.  A sight I feared for many days, might never happen again.  It’s been a hell of a two weeks. 

The trouble started about 3 weeks ago.  Jay woke up with what looked like a fire ant bite with and a nasty red ring around it.  We now believe it was a spider bite.  The bite hurt him.  We popped it a few times over the next few days, and the pain would ease.  When he had MERCER a few years ago, (The Girls) he had a similar pimple on his arm, but no red ring. 

Jay is a medical assistant (MA) and works in a medical office.  He saw the nurse practitioner that is there at the clinic.  Both feared it might be MERCER again and he was prescribed a sulfur based antibiotic called Bactrim.  Jay took it for a week as prescribed.  The bite did not get worse, but Jay developed a fever and did not feel well.  He was tired and weak.  He had trouble getting threw a full day of work, and came home early several times that week.  I knew something was wrong.  It was not like Jay, and he should not have a fever if on antibiotics, or at least as I understood it.

I took Jay to the doctor that Friday the 5^th.  The doctors were baffled and it took them a while to figure out what was going on.  Jay’s blood pressure was in the tank.  His top number was in the 90’s, where it was usually in between 120 and 140.  He’d lost 20 pounds in two months, his sugar was over 300, and his platelets were extremely low.  We had been unable to see our regular physician, Dr. Warren, so we saw one of his buddies in the clinic.  Within a few minutes, He called Dr. Warren, and the two begin to consult, then they called in a hematologist (blood Dr).  We had no idea what was going on.  After back and forth of about 3 hours, and multiple viles of blood, Jay was admitted to the hospital.  Their guess, the antibiotics were doing this to him.

Jay would spend the next 3 nights in the hospital.  Now Jay never lets me stay overnight.  I hate it, but there is little I can do.  He is just too damn stubborn, and what’s worse, he is right.  He needs to rest, and being there will only make me worry more.  I need a mental break, and to take care of things here on the farm.  I came home and fell apart that first night.  I began to be terrified he would die while I was not there.  I begged Holda, if you take him, just let me be there when it happens.  I truly did not know if I would ever see alive again. 

That first night in the hospital, Jay’s blood pressure got to 68/41.  He was given steroids to make him better, and it worked.  He improved and his platelets came up, but the steroids kept his sugar high.  He was diagnosed with ITP (Immune Thrombocytopenic Purpura) an auto immune disease.  We were given no more information on it, then a small piece of paper with the word on it. 

Sunday afternoon, as I sat waiting for Jay to be released, we talked with the hematologist.  I mentioned to him, how red Jay was in the face, how flushed.  I said, “He only gets this way when he drinks.”  We knew he was allergic to the sulfites in wine and beer.  He used to be able to drink 3 or so beers and then turn red.  Now he does good if he can drink a half a beer.  As we talked, the Dr. began to believe, that the sulfur in the Bactrim, had done this to Jay.  That if he was not allergic to sulfur based medications, he was at least sensitive to them, and that sensitivity had at least caused this adverse reaction.  It was advised he not take sulfur based medications again.  A phone call to Jay’s mom, reviled that Jay’s grandfather PawPaw, was also allergic to sulfur based medications.  Maybe it’s a genetic thing, I am not sure.

The Dr. sent us home with a prescription for steroids, to finish up his course of treatment.  Jay was advised to not go to work for a few days.  So he rested and I tended him.  He just seemed to still be so very weak.  Little things like taking a bath, exhausted him and made him dizzy. 

He tried to go back to work on Thursday the 11^th, but his boss sent him home a few hours later.  She called the house to tell me she was sending him home, and she wanted to make sure he had made it here.  She thought he needed to see the Dr. immediately.  At the office they had tested his sugar and it was very high.  His blood pressure was 81 / over a bottom they could not hear.  We called Dr. Warren’s nurse, who advised, with a blood pressure that low, that we should go back to the hospital.  We transported Jay by ambulance, so he would be seen quicker.  I followed behind.

The ER took forever!  His blood pressure was in the mid 90’s, lower when he slept, his sugar was still high, and his fever was back.  They knew they wanted to admit him at noon, but did not find him a room until about 6.  We asked for a tray.  He is diabetic and he had not eaten since 6:30 that morning.  They did not feed him until he got in his room.  He went 12 hours without eating!!  I was soundly pissed!  Jay took it all in stride.  We were told, “Oh we ordered it, Oh we will look into it.  We have a lot of people today.”  Nothing. 

This time Jay’s platelets were good.  They admitted him for what they called dehydration and acute kidney failure.  We were told nothing else.  But we were told he would not need dialysis or a transplant, you know after I asked.  Dr.’s you understand are too busy to give us mere mortals any scraps of knowledge or information, we are left to figure all this out by ourselves.  Google really is our own friend.  Well except Dr. Warren.  He really is awesome!  He always takes his time with us, listens to us, and helps us understand what is going on.  We could not figure out why Jay was dehydrated though.  He was drinking lots of water, I made sure of it, and peeing copious amounts.  How was it possible he was so dehydrated, he was in kidney failure?

After a conversation with a friend, who works at an animal clinic of all places, she helped me understand.  The sulfur meds and steroids had damaged Jay’s kidneys.  He was drinking enough, but his kidneys could not process the liquids fast enough, and the meds were ridding his body of them too quickly.  The fever was because his body was working so hard, to try to compensate.  Jay and I talked and I told him to ask his Dr’s whether or not he should be taken off some of his meds.  We had begun to believe that because Jay had lost so much weight, his blood pressure was actually normal and the meds he was on were making them too low.  The Dr. agreed and took him off almost all his meds, and he has begun to feel much better. 

Yesterday, he looked better than he had in what seemed like forever.  When I picked him up from the hospital today, he wanted to drive, he wanted to go visit with him mom, and finally he wanted to go grocery shopping.  I was really shocked to see him have so much energy!  Then he made most of dinner.  He hadn’t done that much, in what feels like weeks!

In all this fear and anguish Jay has given me some of the most beautiful moments.  He has been a diabetic for more years then we can remember (at least 5 or so).  He has been treated with Metformin, and then a few months ago they added Invocana.  We think the Invocana helped him to lose the weight, and had a hand in the putting him in the hospital the second time.

When Jay was first diagnosed as a diabetic I tried to educate myself about all this disease, to teach him.  I told him I would go on the diabetic diet with him.  I begged and pleaded with him to check his sugar.  And Gods and Jay forgive me, even making fun of him in front of the doctors and others when they asked if he checked his sugar, trying to rattle him, or shame him into doing it.  Nothing.  For years nothing.

It’s no secret that Jay and I love food.  We own a food truck for Gods’ sake.  But even as a diabetic, having diabetics in his family, his father having kidney disease, and Momma Muriel from complications due to diabetes, Jay refused to check his sugar, or eat as he should.  Now he has never been a sweet eater, but he loves rice, gravy, and sweet tea.  When we went to see Dr. Warren’s partner, he prescribed Jay injectable insulin, and I think it kind of scared him. 

Jay came home from the first hospital stay, talking about carbs, something he NEVER did.  I even went so far as to go to library and check out a book on diabetes.  I even began to measure out our food. 

This trip in the hospital he was visited by a nutritionist.  They chatted for a long time. I was not there.  Later that day he told me he wanted to start eating better and to start walking.  I played the role of supportive wife.  I told him I would help him, do anything for him, and when I had a moment alone to myself teared up, and gave thanks to the Gods that he finally wanted to change.  That he had finally seen the light, moments I had dreamed of, dared to hope for so long ago, were finally coming true. 

As we sat at his mom’s this afternoon we talked of what to make for dinner.  He told me he wanted to go to the grocery to pick up more things for tonight, but that he wanted to take his time.  I had an idea what he meant.  In the grocery store, here was my beautiful, stubborn, incredible, husband, flipping over packages, and making choices of products based on carbs, and how many starches he could have in a meal. 

I did really good, and kept my composure.  I did not push, I let him, be him, and tried very hard not to cry at the miracle happening before me.  He got it!  After all these years, it took him getting this sick to finally get it.  I am still too stunned to understand it all.  Overwhelmed, tired, confused, ever grateful, and praying that this bubble will not burst. 

I think we just went from #Team Ilsa, to #Team Plaisance.

 

 

Control

When I was a young woman, I volunteered with Barbara at the nursing home in Mansfield.  We did manicures on the ladies there once a week.  One visit, one of the nurses brought in a load of towels to be folded.  I along with one of the older ladies helped.  Now everyone has their own way of folding clothes, and I am sure most couples will tell you it might have caused one or two fights when they first got together.  Example, I was taught that you fold the wash clothes in quarters.  As I sat there calmly folding the washcloths at the nursing home, my stack of quartered wash clothes all nice and neat, one of the older ladies on the other side of the table took each of my washcloths and unfolded them so they were in halves.  At first I was really pissed, watching her undo all my work, and then I was kind of well undone myself.  It had never occurred to me, there might be other ways of doing things, not just my way which I considered to be the right way.  Either way the washcloths still got folded.

I am having one of those moments again this weekend.  As I struggle and continue to fight to clean up the massive damage my mother has done to me.  As I continue to seek the real Ilsa, not just the woman / girl/ child who has spent a life time defending and protecting herself.  With ever breath I am trying to learn to be kinder, more thoughtful, more understanding, and to let go my constant ridged need for control.

Pete, my beloved professor of Anthropology, used to say, “There are two kinds of people in the world Ilsa, lumpers and splitters.  You my dear are a lumper.”  To illustrate what I mean, let me tell you about a little test I used to ask of people who worked under me.  I would give them a hand full of writing implements, pens, pencils, markers, sharpies, etc, and tell them to separate them for me.  You can answer it in several ways, some lumped all the pens in one pile, and the pencils in the other.  They were the lumpers.  Some however put the pens together in one pile and then separated them out, into colors or tip types or both.  There were details that were important to them, that were not important to others.  They were the splitters.  They all got sorted, and no pile was worse for the wear.  But it gave me a clue, as to how their minds worked.  To lumpers I gave simple instructions, to splitters I gave more complex instructions. 

It is my job to run the house, and for the last week or so I have been down with another round of bronchitis.  And I have tried this time to be more still and quite with this bout, to let my body heal.  But I still have my issues folks.  I know Jay can run this house, not the way I do, not on the same time table, and sometimes that is difficult for me.  We had a fight the other night, and after it was over I was upset and laying on the bed.  Jay came in and we talked and made up.  He reminded me that he is a different person, and there for is going to do things different then I do.  Heartbreaking, that at 40, sometimes I forget such simple things, that I have to be told these things again and again.

I told you last time we talked that I was reading a good book called, “Healing the daughters of narcissistic mothers:  Will I ever be good enough?” by Dr. Karyl McBride.  In it she talks about the engulfing narcissistic mother.  She is the kind that never sees her child and her as different people.  Her child is an extension of herself.  My mother was very much this way with me.  I simply called it smothering.  I have realized as of late, that I think I often act that way towards Jay.  Although I would never degrade him, by saying like so many of my friends do, that their husband is their other child, Jay is my equal, my pal, my partner in crime, but I would never, ever consider him my child.  It has been my realization this week, I often do not see Jay as his own separate person.  I seem him as an extension of myself, and therefore expect him to pick up where I left off, in the same way I would.  As awful as all this sounds, at least I am aware of this horrendousness and I am trying to correct it. 

Jay is not me, and I have to remember that.  He is going to run the house on a different time table then I do.  He is going to start cooking dinner when he gets hungry.  Not when the timer on my tablet says we should.  I try to start cooking dinner at a certain time, so that I can have us in bed at a certain time, to make sure he gets as close to 8 hours of sleep as he can, because he has to go to work the next day.  These are not his major concerns in life.

My days are consumed with his schedule.  Making sure his scrubs and shirts are clean, so that he has multiple choices to pick from for the next day.  I know he like the shirts more than the scrub tops.  Trying to make sure the kitchen is clean enough to cook in for super.  That the sheets are clean, the floors swept, the house smells clean, the poop is picked up, and the animals are tended to.  It is a full time job.  Then I try to take care of me, write, exercise, meditate, and crochet in the spare moments in between, and beat myself up that I don’t have a job that brings in money.  And then trying to hurry up and write us out of poverty.  Hoping my writings will sell, and provide additional income for us.

I’m taking it in fits and spurts y’all, so please forgive me.  I just sat down from cleaning up in the kitchen, and working on dinner, and fussing with Jay over getting things done.  There has to be a learning curve here.  I sit and sit until I can’t do it anymore, and then I get up and start handling things, cause it needs to be handled.  Then I think, I am just helping, not control things, or imparting that he can’t handle things.  Letting go and not handling everything is rough on me.  Then I think, he works, I can’t ask him to do my job too, but then I am beating a dead horse with all this.  Just a note to say, I’m working on it y’all.  It’s harder than it looks. 

Ilsa