Month: July 2014

So, long and icky story short, I was violently ill to my stomach on Friday last.

I was hoping I was cured, so on Saturday, Stan and I ran away.  We had a luncheon out and went shopping and then got a hotel room.  It was all very relaxing.  I actually fell asleep during the movie we rented.

The kids kept calling because our internet was down.  It was down forever and a day because ATT is a bunch of clueless dumb asses. I take that back, some were nice dumb asses but some of them had no clue.

Anyway, I fell asleep and it was blissful.

For some reason, I woke up with asthma.  I used my inhaler and that set off the pain in side like crazy…. Crazy!

I took pain meds and tried just sitting up.  It would not go away.

So, the conclusion of our lovely date night was Stan taking me to ER at Seton NW which was near the hotel.

They were really, nice.

They released me and it got worse and worse and worse.  I called the gastro doc who is doing my liver biopsy and he said to go to his hospital and get admitted through ER.

I had Stan drop me off.  I knew it would be icky.  They have hypochondriac written all over my charts there.

Long story short, I was admitted but treated like I was a problem child.  I was told ‘no iv meds for pain.’

The upshot was my CT from the other hospital showed I was terribly constipated.  Why did they not tell me that?

It’s MY GUT!

ON Tuesday, I had a four hour test for gastric motility.  They gave me radioactive eggs and toast and juice and then,  every hour, on the hour, they looked at  my stomach with a special Doppler machine.  It should show the progress of food through the stomach and down to the intestines.  Mine did not move at all.

I have severe gastroparesis.

I am now on a diet of mushy stuff.

Here is what bothered me most: My brother and my husband both said I usually get sick on the weekends.

What is that?  What does it mean?  Do I try to have gastroparesis?  Did I know I had it and whatever else is causing my gastric issues?

That made me feel like crawling in a hole and dying.  I ‘get sick’ on the weekends because I CAN’T GET SICK DURING THE WEEK.

I feel like a loser x a loser x a loser.

Someone just let me out of here please.  There has been a mistake.  I got the wrong body or something and I need an exchange.

Friday is the biopsy on my liver.  I don’t want to go.

I am scared of it.

But, hey, it’s the weekend.

Party ON.

What Am I?

Patient, Person, Human Being through the days of her life and praying she doesn’t fall down.

Who Am I?

Mother, Wife, Sister, Niece, Friend, Trying hard to please and yet save a corner of myself for me.

Where Am I?

Suburban Oasis in the hot, hot summer, crawling like an insect from air conditioned space to air conditioned space because my body no longer tolerates the heat.  My favorite summer activities are just a whisper–no more.

What do I Want?

I don’t know anymore. Maybe health and bills paid on time and in full?  Who cares about the bills?  Health would be fine!  No, I want my kids to be healthy and happy.  The rest is gravy..

Grave-y. Grave-ee. Grave. Grove. Grovey.. Groovey – Grooved

Grooved like these new lines on my face. They are there for a reason.

What Am I?

A Survivor.

Who Am I?

I am the only one like me…

Where Am I?

In the right place.

Why am I here?

I haven’t the foggiest.

But as long as I can write….

I have myself.

Ok, I am not going to talk about depression or my aunt today.  Sorry for being so repetitive the last two posts…

I guess I just write about what is going on with me.

So, here again, this is the latest.  I suppose others with chronic illnesses can identify with this:

I have no veins.

I mean, I have them, but they are full of nasty scar tissue or they blow up before they can be used anymore.

I was on IV therapy for eight years after my initial diagnosis with my immune system disease (CVID).  I now do a subcutaneous infusion into my tummy with four needles across the front every week.  This is much better.

However, all of those sticks for IV’s that lasted all day, plus all of the ER visits and hospital stays, has wreaked havoc on what were never great veins.

After one of my surgeries this year, I woke up with a IV in my foot.  I had bruises all over in the usual spots so it was easy to figure out what happened.  It was just strange.

The last few weeks, whenever I have been in ER, or in a lab, no one can get any blood.

This is discouraging.

So, over the course of the last two days, I have been the office of the liver specialist twice.  Yesterday the phlebotomist could not get a drop out of me and gave up after three sticks.  I was getting a little woozy and had to sit a bit and drink some water.

She was actually in this morning, on a Saturday, so I went back in.  Luckily, she managed to get enough to drip out of my two AC’s (the big vein in the crook of your elbow area) to fill three of her four vials.  She said that would just have to do.

I try to be cheerful, chatty and tough about the whole thing.  I mean, what else can I do?

I did come to the conclusion that between the bruises from needle sticks and my weirdo immune system rash, which has produced disgusting scars, I need to cover my arms when I get ‘dressed up.’  I have a lovely wedding to go to today and I hate to subject anyone to my horror show arms.  I bought my first ever shrug…

Try explaining the clothing term, ‘shrug’ to a guy!  I think I will be ‘shrugging’ a lot in the future!

What I need is a port-a-cath.  That is a direct line into into a vein in my chest that is implanted by a surgeon.  The problem is that it runs right next to the heart and if it infects, it can lead to death.  Apparently this can happen rather often with people who have damaged immune systems.

Yeah? Well.

I am pretty tired of all the PRICKS!!!

I mean, STICKS!!!!

Really, though.  I am not a vein person.

 

 

The last couple of weeks I have been trying to ignore the pain in my side and the interstitial cystitis (peeing is like shooting hot lava out of my crotch)  and just muscle through.  I need to be on duty here at home. Also, I have found that when pushed, I can fake it pretty damned well.

However, as many of you with a chronic illness know, there is a very fine point between pushing yourself, faking it and falling over the precipice into being too sick to function.

Wouldn’t it be nice if we came equipped a warning light?  I think it should be just like the one on my car’s gas tank.  It should show when I am getting low on fuel and then have a graphic aid that shows where the tank is located.

Interesting point about how my brain works: I can never remember which side the gas tank is on, even with the graphic aid.  In fact, when I look at the graphic, I get more confused.  I only get it right if I just do it without thinking.

Is there a metaphor here?  A lesson?  Hmmmmmmmmm.

My  teen aged son is suffering from clinical depression.  He has been treated for this before and has had problems related to his sleep cycle his entire life.  Apparently, having mono this spring, coupled with a huge leap through puberty, has upset his chemical balance horribly.  I should have been on top of it sooner.

He is miserable.

Chemicals and family genetics that predispose him to depressive illness aside, we have had another tough year.  I have been in and out of the hospital and that has been rough on him and the rest of the family unit.

In addition, caring for my aunt and  taking into account the relationship he has formed with her, are also factors.  For the last school year, she has picked him up from charter school on a number of days.  I think they have both enjoyed it.  I have felt like it was a great chance for my son to bond with the only remaining “elder” we have.

Now, she is on the decline, and he is having to live through that experience, just as he has done, with three other grandmas, in the last four years.  It’s too much for a fourteen year old to process. I don’t care how much therapy you go through; it’s tough.

Hell, I can’t process it either.

I feel like I am a calloused bitch when it comes to my aunt.  I can’t ‘feel’ anything.  I am just numb.

Obviously, my son is feeling things.

So, Onward and Upward.

Muscle Through.

I am really trying to get some muscle tone back into my physical body. I have been doing arm exercises and tummy exercises because my body doesn’t look right.  I mean, I know I am fat and overweight and all that but usually my body is firm.

Firm has gone bye bye.

Maybe part of this stage of life is about building psychological muscles as well.

I can’t afford to go all flabby on the inside.  I have to keep my head up.. keep marching… so the rest of my crew can see my flag… jauntily waving… even when things suck.

That is actually a good thing.  It makes me proud to be me.

I am a good flag carrier

Go, Me!

 

I think life is truly a merry-go-round.  It is also what we make of it.  For me, things are the same or, if you want to frame it a certain way, worse.

My liver area hurts still.  My aunt nearly killed herself with booze and God-knows-what last week and my husband and I are her care-givers.  She is 79 and a mess with cardiac failure that will get her sooner rather than later.  She has a great deal of depression and has not wanted to be around since my mother, her sister, died four years ago.

I feel battle worn and weary in that department. We have lost so may ‘grandmas’ the last few years, and participated in everyone’s care, when no one else wanted to do the dirty work.  I am just flat.

Of course I love her and don’t want her to die.

My son’s depression is off the charts and we had an emergency call to the psychiatrist this weekend.

On and on and on and…on.

But, good news! I am cooking on my fiction piece and that is changing everything.  I figured something out: when I used to write a lot of fiction, I used it as an escape.

DUH.

So, I am doing that again.  It is a healthy obsession.  I have to let my mind go and just write and riff, and do research!

I loves it!

So, watch out world:) Teen fantasy fiction award coming up and ……

A MOVIE!