Some Days Just Suck….

I call this blog, ‘scenes from the immune system wars’ for a reason.  I am constantly in a battle with myself.  My body is in rebellion and I am on the front lines of a war. I am war weary and sometimes I just want to run out of fight.

Sadly, that is not an option. Neither is whining:)

But I do have some perspective these days.  I have been at war long enough to know there will be campaign after campaign and that it will be never ending.  I have to keep myself fit, both mentally and physically, for each and every onslaught.

What I mean by this is:  I must acknowledge my enemy, my missing immunoglobulins, my faulty cells, and the havoc they wreak.  I must be okay with the fact that I am working at a disadvantage here.  I don’t know what all is happening to me on the inside.  The doctors don’t know.  My current diagnosis is “Atypical CVID.” Yeah.  CVID is Common Variable Immune Disease/Disorder.  It is variable by definition, not common, though.  There are one in 50, 000 of us.

It is eating away at my autoimmunity somehow as well.  No one really knows why.

So, that is the enemy.

I have weapons.  I have lots and lots of drugs.  One drug in particular: my infusion medication, Gammagard subcutaneous igg, is quite literally a life saver.  It is a plasma product that I infuse into my belly once a week with four needles. It protects me against infection and seems to help with pain and fatigue.

Without it, I lose the war.

I am infusing now.

But, some days just suck.  And those days used to frighten me.  Yesterday was a suck day.  I hurt all over… every joint, every ligament.  I could not move my eyes in my head without pain.  I was tired.  Too tired to drink water.  But, I made it.  I got all the basics of my life done and I made it.

Today is a bit better.

I won.

I did not let it freak me out.  I just realized, as I must realize, that some days will suck.  I have to take the sucky days with the good days and keep fighting.

I have to take the needles in my belly even though they hurt and itch and keep going and keep being grateful as hell for them.

This is a weird war!  But I am in for the long run.  I may not win but I sure as hell won’t lose!




The Nest Was Full

This past thirty seven hours or so have been nice. My daughter came home from college.  I had not seen her in almost a month.  I am new to this whole, ‘grown child’ thing.  I mean, she is not really grown; she is a first semester college freshman.  But, she is a fledgling.  This had been her longest solo flight yet.

She is doing well and I am proud.  I also miss her terribly.

I still have plenty on my plate at home.  My fourteen year old son is full of challenge, as are the five pets, the spouse and the house and the chronic illness.  But, that special mommy/daughter thing has been missing.

I am a GIRLY GRRL!!!!  You cannot talk about hairstyles with two men in the house!

But, I let her go again.  She went back out into the unknown and took another piece of me with her.  This time she is riding back to her University, ninety odd miles away, with a friend I don’t know, from a drop off point where I did not do the drop off (my husband did). I have let go.

Is it crazy that I took a great big sniff of her hair before she left?  Or that I made her promise to call me when she got to her dorm?  Three times?

I pushed myself, health wise, this weekend.  I wanted to spend as much time with her as she would give me.

As I write all of this I feel like a crazy, over protective, Jewish mother.  I guess I am.  But I am trying so hard to not say much and to not hover over her.

I don’t even call her much.

Why do children, pieces of ourselves, have to be so damned difficult?  We birth them and work so, so hard to raise them, and then we work hard to to let them become responsible adults on their own.

I just pray I am doing a decent job of it.  I feel as though the best parts of myself; my very vitality is in them and no longer in me.  Perhaps that is not a good thing.

Oh well! No more philosophy from this corner.  I long ago crossed into Earth mother territory.  There is no going back!

Bring all the little children and I’ll feed them, fuss over them and listen to their troubles.  I love them all.

Positive affirmations!

Does anyone besides me remember the positive affirmations movement in the late 80’s and early 90’s ? It was so wide spread that it was even parodied on Saturday Night Live.

My therapist at the time told me to do it.  She said, “I want you to write down six positive affirmations, nice messages to yourself, and say them each day, all week long.”  I was supposed to tape them to the bathroom mirror.  They were lame.

It was like, “You are beautiful!” Or, “You are smart and organized.”

You get the picture.  I always felt self conscious, standing in the mirror and telling myself these things.  I was even supposed to hug myself: Gaaak!

So, here we are in the 21st century.  I think we are more jaded as a culture these days.  That isn’t necessarily a good thing, but it’s true.  I know I am more jaded.  I am older and have a tougher skin.

But it turns out there is still some room for positive affirmation.  But, just thinking up some platitudes and posting them on my bathroom mirror won’t work any better than it did twenty odd years ago.  I need to come up with things that are really and  truly from the heart.  Things that I have discovered in my deepest, darkest self… you get the idea:)

I have been seriously trying to change my eating habits. For the last two years, I have been gluten free and alcohol free and coffee free.  You would think that would be enough! But no, it isn’t.  If I want to lose weight while going off and on medications like prednisone, I have to get really serious.  If I want to keep my body moving on the days it hurts all over, I have to get really serious.

So, I joined Weight Watchers online and I started giving myself walking challenges.  This has been helping.  I started losing a bit of weight and a bit of flab.

And then, I started writing down my food and my WW points, after the fact.  I mean, I would guesstimate what I had eaten and make it fit into the points I had available for that day. And BADA BING! I quit losing weight.

Poor, pathetic me!

So Sad. I just cannot seem to lose the weight.  What is wrong with me??

I am a liar.  That is what is wrong with me.  I lie to myself.  I am playing games with myself.  There are no victims here: just me, lying to me.

So, I had an aha moment: I LOVE MYSELF MORE THAN I LOVE FOOD.

That is a new one for me.  Food has comforted me and calmed me and given me something to hide behind my whole life.  But, if I truly love myself more than I love food then there are no more excuses.  All I have to do now is love myself thin.

So, that is my positive affirmation.  It is pretty simple. Every time my hand reaches into the pantry or the fridge I will ask myself, “is this because you love yourself and you are hungry and making a good choice? ”

I just hope I don’t tell myself to eff off!