Where Do I Begin?

I just did a very bad thing.  I read through a post that I never published.

I remember now why I never published it.

Now I am crying.

Well, enough of that shit.  I need to get my chin up and go on.  There is no time for self pity or sadness or any of that.

My latest and greatest medical achievement has been getting a port a cath on Thursday.  A  port a cath is a little button next to your clavicle that has a connection running through it and straight on down to your main artery.  It is a permanent way to get an IV.

I have needed this for a long time.  But, as is usual with me, I have not healed very well.

I am red, swollen and in pain way past when I should be.  I ended up on antibiotics.

I have no real idea if it is getting better because I still have a temp but then, I often do run a temperature.

I feel worn out and worn down and weepy to be honest.

Yesterday I just slept all day and all night and ate vegan donuts.  It was nice.

But, I have to get up and running. There are things to do and I need to be on the go.

Something interesting happened on Saturday: I became my mother!

I had to laugh through the tears.

Because I was feeling so rough and because my family did not want to hear about it, I was talking to myself.  This is something my mother did a lot of!

It used to drive everyone nuts!

Now I have done it.

My husband told me that the kids (and he) thought I was “on” something or that my behavior was bothering them.

After a bit of probing I discovered the problem was that I had been talking to myself.

The question is, why was I doing this?

I figured it out.

I needed my mom.  I get really desperately lonely with my illness sometimes and I miss having my mommy.  She may have talked to herself but she always listened to me.

I think my subconscious was channeling her by talking.

Weird? Yes. It is very, very weird! But I was trying to give myself what I needed.

I don’t get it at home.

That isn’t anyone’s fault.  It is what it is.

So today I started to get in the shower and get dressed and such and I realized I was doing it again.  I even started to narrate what it was I was doing and remark on how I felt.

Oh no!  I realized I was doing it again.  If I am not careful I will do it all the time and my family will really have enough of me.

So, I am practicing being quiet.

My thoughts, my comments, my feelings, all need to stay quietly locked up in my head.

I figure it is safe enough if I let  my inner mommy talk to me in there. I know she still cares.

And I know she is never too, too far away.

So, mom, I need your input.

Daddy, you too.

My life is kind of scary and uncertain and I feel lonely and sad.  You two were my protectors: my great wall of China.

I still need to talk to you.

But, let’s keep it on the down low, okay?

I know you can hear me anyway.





Insomniac From Hell


April 5, 2016

So, here I am.  It is stupidly late and I have maybe had two or three hours to sleep.

I would like to write this missive into my blog but I can’t because the internet keeps crashing. 

This is truly a modern dilemma.  How in the hell can I get through a night like this without internet access?

It is inhumane!

I have attacked the problem with every bit of my computing power.  The computer was underwhelmed.

The only satisfaction I have is writing this and hoping against hope that I find it again so I can stick into the right file.

Why do the chronically ill have insomnia?

Do we not get out enough? Do we not think enough?  Do we wallow around in our pain too much?

I really don’t know. 

All I know is that when I do sleep well, it is magical and I never ever want to wake back up.

I have had two sleep studies done.  They wire you up like a bizarre zombie and then tell you to go to sleep ‘naturally’ to see if you have a  diagnosable issue that is causing your sleep deficit.

It is really creepy because there is a guy in the next room, watching you on camera. Both times, my diagnosis was the same: insomnia for unknown cause.

There are no machines or lovely devices that will send me off into dreamland in an reliable way.  This is just the way I am built.

It dates back before I was diagnosed with any rotten diseases.  It has been a struggle to sleep for as long as I remember.  My only period of reprieve was when my children were small and I was working 3/4 time at the University.  I was simply too tired to care at that point.

To be totally honest, I used to love cuddling the children and watching them sleep.  Samuel and I co-slept until he was five.  It was too much and not great on my marriage but I loved having his little baby body so close.

My sleep is so erratic and weird that my husband doe not like to spend the night in my bed.  He hangs out a while and then removes himself to the guest room.

So, mostly I am alone.  I have an attack chihuahua mix, Penny.  But even Penny bites when I try to cuddle her at 3 am.

And so, here I sit. 

I have taken all the drugs I dare. 

I have wet towels for my arms and sides because they itch uncontrollably.

So what can I do tomorrow to make this different? 

I think it is time I start walking every day.  I am incredibly weak from five hospital stays since November.  This last one, which involved my lungs and heart (surrounding the heart) area holding onto fluid, scared me pretty badly.

I have to take control of this body of mine as best I can.

I had an up close and personal meeting with my G-d that week and I know  that I have to make changes to survive: 1. I have to deal with my depression and fear head on. To this end I already found and had an intake session with a new therapist.  She practices hypnosis and EMDR, which are both designed  to help with the type of pain I have as well as work through the trauma I have  accumulated in hospitals and ER’s these last few years.   2. I have to work to free myself from a lot of my prescriptions and western drugs to make me feel better.  I feel pretty convicted that at the end of the day, many of them simply exacerbate the problems. 3. Have very few expectations of myself.  If I am home and healing, that is a legitimate use of my time. 4. I only see two doctors a week: no more and usually no less.  If I stick to this, I will remain more sane and be less likely to confuse myself and my doctors! 5. And last but certainly not least: find joy!

This is a fairly tough and comprehensive list but I hope it is realistic.

I learned last week in the hospital that I didn’t want to die.

For the two days I had trouble breathing  I became pretty scared.  I did not know if I was going to be moved to the ICU or if I would just stop breathing.  I realized that even though my life has been really painful and really hard these last years, I still want to be here.

I am not finished yet.

So,Lord willing and the creek don’t rise, I plan to stay.