Category: Uncategorized

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.

I fell in a puddle this week.  It was very shallow yet very deep.

I could not fight my way all the to the surface.

I swam and swam and barely got my nose out to breathe.

Still, my eyes have been covered in the water, brackish and stale.

I am attracting bugs: mosquito larva are my only friends here.

I don’t want to stay here so I swim and and I swim.

How can there be an undertow in a puddle?

What is it I am fighting so hard?

There is more here than meets the eye, so to speak.

If I let myself sink any deeper into this puddle I am aware of its deception;

It is really a whirlpool.

It has layers upon layers of dangerous suction and it wants to pull me down to its depths: to eat me up.

I could, though, just relax into it and stop trying.  Maybe at the bottom there would be mermaids who would crown me with garlands and welcome me softly to their watery realms.

Probably not.

More likely they would be fanged harpys; biting me and strangling me with their boughs of seaweed.

I cannot relax here in this puddle.

I must keep my nose up until I can push myself back out.

I’ll not become fodder for baby insects nor swept away by the currents of my own dark imagination.

I will look up to the sunshine and swim hard towards the light.

 

We did it!!!!! I managed to do an entire Passover seder and many parts meal .

I invited cool people we never get to see. Our friends have a daughter with special needs. She is the same age as Samuel but is very fragile due to severe Epilepsy and breathing issues. She is in and out of the hospital a lot and has to be watched all night to make sure her oxygen levels stay OK and that she does not start to have a seizure.

This little girl is so lucky. She has two beautiful moms. There are  nurses that are supposed to be professional who   are hired to come to their home at night to care for her so they can rest before going to work. They never stay on the job. It’s too scary..

So our friends, take turns not sleeping but standing over this beautiful child all night.

How do they do it?

I dont know.  You do what you have to do . I sit in ER so many nights.

 

They have four kids in college as well.

Grace in action is what I see.

I saw beauty watching their family tonight. I was so honored to have them at my table.

Shabbat Shalom indeed!

I refuse to accept the disability label.  It pisses me off.  It makes me want to curse, a lot.  When I had to apply for Social Security Disability I did not even let the D word into my mind.  I just knew I had to get the money so I could take a break from teaching. It was a harrowing, upsetting process.  I won on the first time around.  I remember thinking, “oh, I must be really sick.”

As time has gone on and medical crises have waxed and waned, I have still never put myself in the category of, “disabled.”  To me, that word means you can’t walk or you can’t see or you can’t hear.  Even though, if you ask me outright I will tell you the proper term for those things is, “differently abled.”  I believe that.  I really do: But now, back to me and closer to home, so to speak.  I realize my family and some of my friends increasingly see me as disabled.  And as a result, they treat me differently.

The changes are slow, almost imperceptible, especially when you don’t want to see them.  My husband is always asking me, “Did you do too much?” or “Why did you do that?”  I appreciate his concern but his understanding of what wears me out and when is pretty off base.  It’s ok.  He doesn’t mean it.  How in the world could he know me better than myself?  Nah.. that can’t be true.

I even notice my kids getting in on the act. That is nothing compared to the people who just don’t talk to me anymore.  It is like I am toxic.  I guess I am.  I am not much fun.

BUT I AM NOT FUCKING DISABLED.

My therapist, who has just retired (shit, shit, shit) ran a group called “Adults with a disability” for like thirteen years.  She invited me and I visited a few times. It was scary.  I didn’t like the fact that it hit so close to home.  I kept telling myself I didn’t belong with ‘those’ people. I suppose a valid question to ask would be,
“Who do I belong with?”

No one and nowhere: I am in a no man’s land of chronic illness and I don’t know the way out. I keep thinking I have it all under control and then the next thing hits.

I am a mom.  I am a wife. Those are the two roles I cannot let slide.  I try to do them above all.  I also try to write.  Writing is part of being for me. I am a musician and I am not making music now and that hurts.  Writing is the only way to let the artist stuff out.

I am, despite it all, a person of faith.  That faith has morphed and changed shape drastically, and I want to pursue new avenues.  But, for now, I don’t seem capable of getting too far past my own door and the demands of my family and my life.  I am trying to be patient.  Before I know it, my youngest (8^th grade) will be out the door, and I will have a lot of time on my hands.

So, am I disabled?

I don’t know.

Maybe a better answer is; I don’t care.  Labels are not particularly useful.  I think I will not worry about them.  After all, I have never been one for labels. I don’t like race labels and I don’t like sexuality labels.  It is all fluid.  That is how I see everything… shades of gray.  I suppose there are days when I am disabled.  But there are many more where I am not.  I am unstoppable because I choose to get up and get out the door despite the pain and despite the fatigue and despite whatever else is bothering my physical body.  I am my own boss.

So, fuck the labels.  I can choose my own future.  If that is at all true, I am not done yet.  Don’t count me out.

 

 

 

 

 

These last few months have been particularly isolating.  I was/ am a very social person; an extrovert.

I used to get my social jollies out by teaching and interacting with my colleagues at the University.  So, even if we did not get together with friends or go out much at home, it didn’t really matter.

My husband is an introvert supreme.  Working in a team based,office environment all week is exhausting for him.  He does a great job of being social in that setting  but on the weekend he really needs to detox.

Since I became chronically ill, many things have changed, obviously.  One of those is any pretense whatsoever at a social life.

I no longer teach and most weeks I seem to just survive kid care and animals.  On the weekends, we recoup, try to reconnect and do chores.  We sometimes go out to eat or go to a movie but that is about it.  We do a lot of driving around and dropping off kids and picking up kids, which is fine.

I know that if I want any of this to change I have to do it for myself.  Yet, I seem to not make the effort.  Whenever push comes to shove, I spend what time and energy I do have with my husband.  I feel like my energy needs to go to that relationship.

But I have to say, it does get mighty lonely.

I used to call my dad every day when he was alive.  After his death in 1994, I called mom every day.  She died in 2010.  I find that with both of them gone, I don’t have much of a sounding board.  I am the grown up.  I notice my daughter, a freshman in college, is starting to call me most days:)  It’s sweet.

I sometimes wish I had the kind of sister I could call all the time: I don’t.

I talk with my brother about once a week but it isn’t like, you know, girly talk.

So, why am I bitching?  I don’t know.  I just feel sort of isolated with my chronic crap.  I am sidelined.  I wonder if it will ever change.  Will my life be like this from here on out?

That thought sort of scares me.  I cannot imagine my life this way. I suppose it will change.  When my son graduates from high school in four years, there will be a huge new gap in my life.  Maybe, just maybe, I will get healthier.

I just need to get outside: outside of myself and outside of my life a bit.  The way to do that for me is to go out and be social.  I just have to get up the get go to do it.

OH well.  At least I am writing today!  That is something!

 

 

Well, I got the news yesterday, after I called the doctor. Apparently they had been calling and calling and could not figure out why the heck I wasn’t replying.  THEY HAD THE WRONG DAMNED NUMBER.  Whoever at their office that entered my information transposed my two numbers into one; brilliant.

Okay, so the news at hand: the stent in my pancreas did not float away.  It has to come out in the next few weeks surgically.  But, what I did not know is that it has to come out in an ERCP procedure.

“What’s that?” you ask.  ERCP is the more difficult procedure, where they knock me out completely and cut into my pancreas (or bile duct).  It makes everything down there swell and is hard to recover from.  This will be my fourth since Jan. 7 of this year.

For some reason, I had thought retrieval would be by Upper Endoscopy.  That is a much simpler procedure and is how the biliary stents were retrieved.  Silly me.

So, back to Houston and another hospital stay and a big old, “how do we do this and get my husband there and etc. etc. ”

Last night my husband told me he has had some trouble at work due to all the distractions from my illness the last couple of months.  He assured me it was no big deal but I can’t help but wonder.  For the last trip, all he did was drive me but he was preoccupied worrying about me.

I need a friend or a relative that cares enough to go with me and I just don’t know who to ask.  I really don’t. I am out of options.  I missed a lot of vital information from the doctor last time because I was stoned.

My friend was there for the surgery and my cousin was in and out but it just isn’t the same.  This is very, very frustrating.  It makes the whole thing harder.  I don’t mean to bitch but I can’t just worry about the surgery, I have to worry about child care, time off for my husband and what it will do to his job and animal care and everything else.

This is what happens when your parents are dead and your siblings are not terribly helpful. My aunt is around but no longer capable of much.  My best friend and my kid’s god father is just out of cataract surgery (he has type 1 diabetes) and is hopefully getting some vision back.  He cannot drive right now.

Another good friend is undergoing treatment for breast cancer.

My neighbors and friends are all volunteered out.

I feel really, really out of control.  I need help and don’t know where to turn.  I have spent countless hours, days and nights, alone in hospitals.

I am so over that.

And then, when I get home, I am still down and out for at least a week.  I need help on this end with child care.  I have to drag my husband once again, down into the depths with me.

Is there ever an end here?

I am down:  Really, really down. I am in the pits of Sheol; the valley of the shadow here.

YELP.

 

 

Sorry for the Germanism there but it really does make more sense, doesn’t it?

I am trying to coast into the warmer, friendlier weather in a metaphysical way, “For lo the winter is past, and the rains are over and gone.” Song of Songs (Chapter 2, verse 11).

“Rise up, my fair one, and come away..”

I am trying to listen to the psalmist and put the dark winter and its pain and sorrows behind me in every way. But I am not naive’ enough to think chanting the psalms or holding my face to the sun will do the trick.

Something else is required.  What is it?  I want a magic formula.  I have to have one. Oh yeah, damn it; I am an adult and I know there really isn’t one.  Crap.

Does that mean I have to be a cynic too?  Hmmmmmm.

I think I choose to suspend disbelief; like in the movies.  For instance, we took the family to a small renaissance festival last weekend.   Almost everyone was in costume and it was very laid back and friendly.  I was sorry I can no longer swill mead with the best of ’em.

Anywhoo, there were people dressed as elves with nice pointy ears and I pointed out to my husband at one point, “look, there are quite a few elvish folk here.”

He said, “You know this is make believe, right?”

I replied, “No, it’s not. For today, while I am here, there are elves.”

We can make those kinds of choices.  I can choose to point myself towards the sunshine and chant with the Psalmist, “The rain is over and gone.”

I cannot get a head start on the next storm until it hits anyway.  So, in the meantime, if you see a chubby, middle aged woman meandering by the side of the road and looking at the flowers, that is me.

I am glad the spring is finally here.

So, a week ago today I was in Houston, checked into St. Luke’s Episcopal hospital in the medical center.  That place is really kick ass.

The don’t mess around with pain meds or what you can eat or when you need a test or losing your urine or any of those deeply embarrassing things that happen at other places.  The dr. I saw in Houston did not mess about either.

He agreed it was logical to place the pancreatic stent and see if it would help.  First, he had to:

1. Remove the second biliary stent.

2. Decide on the spot whether or not to inject dye into my pancreas.

3. Cut the pancreas and insert a stent.

I decided the risk of infection and failure were worth it and gave him the go ahead.  He was kind and had me admitted for comfort care right there and then and I had some imaging studies done at 4:00 am on Tuesday morning after checking in on Monday evening.

So, he did his stuff and I have a temporary stent in my pancreas that will fall out in a a week or four.  If it does not fall out, he has to retrieve it so I am counting on the fall out thing.

How do I feel?  Sore.  Tired.  Overwhelmed. Scared.

If this doesn’t work, I am out of luck.

Also, I don’t remember a fucking thing from last week.  I was drugged out of my mind and did not have anyone with me for most of the time.  My friend and sister’s sister in law, Feiga, came in when I had the surgery, but I cannot remember much of that.  My cousin was there a couple of times and got me milk shakes and we talked. I just don’t know for sure what we talked about.

So, I am anxious to see the doctor again and hear whatever it is he already told me.  My husband says I told him we (the doctor and I) had a long conversation and I reported it back to him.  The deal is, those drugs are like a mind swipe.

So, one day at a time.  Today is better than yesterday and so forth.

I do know there were some very, very kind people there.  I have never ever felt so warm and fuzzy about a hospital, and that is not just the drugs talking!

Life has been crystallized to its barest essentials for me once again.  All I want is my little piece of relative health and happiness back.

I want time to be with my husband and children.  Time.

I have felt lately like maybe there isn’t too much time.  Melodramatic much?  I don’t know.  It is just a feeling.

I just need to get over myself.  Time, it just all takes time.