Month: May 2014

Having a chronic illness means many things but I find that it means my family relations, particularly those involving my marriage, are a constant, chronic, mind fuck.

I don’t know what it would be like to  live without this constant, slamming stress on my family and marriage.

I realize there are stressors and sadness and dysfunctions in everyone’s lives and relationships but this is the one in my family: me and my chronic illness.

My husband, who is a good guy, even mentioned in therapy, that our family dysfunction is basically me.

That cut me like a knife.  I think he meant it was the illness, not me in particular.  Anyway, that is how I choose to understand it.

This morning is a great example of Chronic Mind Fuck, which shall hereafter be referred to by the acronym, CMF.

Our son has mono and has been sick for over two months.  Every time we think he is getting over it something else pops up.  It has been overwhelming to deal with this on top of my stuff but we are doing our best.

Our son’s school is sending a teacher out several days a week for home bound instruction and last week the teacher (who is a coach) decided our son should go for a bike ride with him to ‘get back in shape.’  Well, this caused a relapse.  The last few days have been awful.  He has had joint pain, fever and now is covered in a mystery rash.

Last night I put in a call to the pediatric nurse but was too tired to stay up and wait for the call back.  I asked my husband to wait for the call.  He did and spoke with both the nurse and through the nurse, one of the pediatricians.

The decision was made that it was not an emergency situation but that he would need to be seen in after hours clinic today, which is Sunday.

Not knowing all of this, I worried all night about it.  My mind, which is damaged by my own situation, goes to the worst case scenarios.  I try to tamp it down and shut it up but it is pretty loud at times:

“He has meningitis now.”  “You are a bad mom.”  “Blah, blah, Blah” “Your son’s immune system is screwed up like yours…”

I woke up early and did research online: bad idea.

Finally my husband woke and we talked over the situation.  I made an appointment for my son for this morning’s clinic and we decided he would take our son in to the doctor while I cleaned house: fun stuff.

Somehow this degenerated into a ‘tit for tat’ argument about me second guessing his ability to handle a pediatric visit.  I understand this.  I was asking  a lot of questions and prompting our fourteen year old son to remind the doctor of all of his symptoms. Basically, I was coaching everyone in what to say.

My husband took this as a sign that I do not trust him to take care of things medical with any proficiency.

This is a deep seated and difficult issue between us.  It is complex.  I don’t think he is incapable but I also don’t think he asks the questions the same way I do.  After all, he is not a chronic patient.

So, unpleasantness ensued.

CMF ensued.

Me wanting to disappear down the toilet drain ensued.

I felt all the energy I have leaving my body through my feet.

I don’t know what this feels like for my husband.  From the look on his face at times it looks like he wants to strangle me.  I don’t really blame him.

But he is a really sweet and loving guy and would not strangle me.  He just hates that I am sick.  He is my polar opposite in all things and thankfully, is strong and healthy and doesn’t think along pathways that lead to strangulation.

It is just that we both suffer from CMF.

I wonder sometimes if CMF is curable.

I don’t know.

I guess the only cure for now is to let it go for today and hope to move on.

Here is my chant for the day:

“F-off!  F-off “I say, “CMF go away!

Come again another day…. or not.”

 

I spent most of the last week back in my own particular version of hell.  Actually, I have been in worse hells.  This particular one is a fairly well-run hell called North Austin Medical Center.

I had a reaction to my igg medication, we think, maybe, maybe not, and I was very sick.  I was given ‘comfort’ meds while I was there but really not anything else.

‘Comfort’ meds means painkillers and anti nausea stuff.  I needed that because I had an ice pick driving itself through my skull and into the back of my neck.  I also was and am still in horrible back pain because when I went to ER for this, they insisted on doing a spinal tap.  The use of steroids might have been appropriate but the hospitalist  in charge of my case was freaked out by me and was scared to give me anything.  I actually had to hold his hand and MAKE him call my immunologist.

Back to the beginning, though.  When I first got there, I had to be poked in the spine.  This is not unusual for this kind of illness, it is just horrible.

It would seem that  am not easy to ‘tap’.  This means that the doctor pushes needles in and out of my spine, looking for fluid, and gets nothing. It is referred to as a ‘dry spinal tap.’  This process is not numbed.  In fact, it is quite the opposite.  I could feel it down my legs and and into the depths of me being.  It is terrifying when it is happening and frightening to even remember.

This has happened to me before, so I was wary ,to say the least.  The doctor who was trying this time kept promising to quit after she did one more poke.  I finally screamed and said, “you’re done!”

After that, I got a radiologist who knew what he was doing and could see where to go by using a special x ray.  He used a lot of lidocaine, went right to the source and the process was done.  He told me that I always have the right to request that my spinal tap be done by radiology and not the ER physician.

What were they looking for?  Aseptic Meningitis or AM.  AM is a sometimes side effect of the immunoglobulin therapy I take to strengthen  my broken immune system. It has happened to me on two other occasions.  The first time, I was violently ill and it was after I had been given my medication through an iv.

After that, I began using subcutaneous therapy which was supposed to mitigate the danger of these severe reactions.  I did great until five months into treatment it seemed to happen again, albeit with less ferocity.

So, here we are,  a year later.  I have become a subq pro.  I do my infusions in no time at all and I can jump back up and keep going.  If I miss by a day, I can tell.  I need my drugs.  The day before I infuse, I feel achy and a little feverish.  After I infuse, I am a happy camper.  It is a perfect program.

I am always cautious.  I pre-medicate and am careful to maintain a clean procedure.  The hardest part about all of it is dealing with the insurance companies that send the drugs and supplies.  They are constantly having problems.  I usually speak to them two to three times a week, on average.

But, it seemed it happened again.  At first I thought I had the flu or had caught mono from my fourteen year old son who I have been nursing through a horrid bout of mono for eight plus weeks.  It started with fatigue and then horrid diarrhea and then the headache that just wouldn’t lay off.  I got concerned when the headache went down the back of my neck and turning my head became difficult.  I was also becoming light sensitive.

So, I went to the weekend doc in a box to get checked out.  He sent me straight over to ER.  I knew the spinal tap was coming but had no idea it would be so so shitty.

My spinal fluid was clear, which indicated I did not have any type of viral meningitis.  That is a good thing.  However, that had been the case one of the other times as well.  I knew things were going to simply get more and more difficult for many days ahead.  I was scared I could not handle it at home.

So, they kept me in the hospital and I was assigned to a Doctor who I am sure meant well but was literally reading on his lap top about my disease and making pronouncements about what I could and could not have based on drug manufacturer notes.  I asked him repeatedly to call my immunologist and speak with her and he ignored me.

Finally I made him do it in front of me.  I asked for steroids which is sort of the standard treatment for this type of reaction and he refused because I have a weakened immune system. He has no idea at all what he was doing.

The nurses made it clear they though he was an idiot.  I asked for my internist who is in the same group as this guy, to come see me, no luck.

Then, he decided I needed a gastroenterologist because I had diarrhea and I had recently had pancreatic surgery.  The Dr. that came in told me, “I don’t really know why I am here but let’s talk anyway.”

At that point, I was still sick and uncomfortable and my iv lines kept blowing up.  I had to have both of the pic line nurses in at different points, to try and get a line in, using their Doppler machines.

The only good thing that happened there was I got to have a decent supply of GIANT RAINBOW POPSICLES.  These things are made by Bluebell ( a Texas ice cream company) and can make almost any situation livable.  I really think that they should put medication in the GIANT RAINBOW POPSICLES.  Who knows?  There might even be a possible use for them in a military or as a way to infiltrate behind enemy lines in a war zone.

They make you feel happy when feeling happy is completely and totally irrational.

The really cool thing is, I can never find the GIANT  ones in any supermarket. They only exist in hospital world.

What does that mean?

Do they really exist at all?  Or are they bullet shaped, brightly colored figments of the imagination?  Are they the little bits and pieces of myself trying to retain a bit of structure when nothing remains but chaos?

I don’t know.  It is too deep; too much.  I just know that the next time I go to hell, and yes, I know there will be a next time in this fucked up body of mine, the GIANT RAINBOW POPSICLES had better be there.

If not, I’m bailing.