I Don't Mind Saying It Now... I Am Over It.

I don't have CVID, but I do have ICL (Idiopathic CD4+ Lymphocytopenia) (HIV NEG) which in my opinion is worse than CVID.  It can't be fixed.  It cannot be helped like those with CVID.  I am broken forever.  I go to NIH (Bethesda, MD) to get studied once a year.  All they can tell me is that my antibodies are sticking to my T-cells and smothering (as in killing) them.  They know of one other person this is happening to, but I have no idea who it is.  There is no cure, no repair and those t-cells are just gone.  Never coming back.

This year I had the lowest T-cell counts ever and all are dropping.  My Cd 4 is at the bottom.  It is the ground starter to jump the immune system into working on an invader.  Imagine if you had someone break into a house and you just stood and watched them wreak havoc on it.  Yeah, that is what my CD4 does.  Watches and sits there.  

This time my IgG was low for the first time.  What does that mean?  I have no earthly idea except  more of my immune system is starting to crater.  My Dr is in Africa and has no idea about these latest readings.  I get to see him sometime in March for answers. The people on the Immune Deficiency Board says I will probably have to have at least a weekly infusion.  We will see what the real Dr says.  They always say, "I am so sorry about your numbers".  Isn't that handy?

So last week I got terribly sick.  One cell of my immune system must have seen the flu pass through, because for the first time in years I had a 102.8 temp.  That is a good thing.  I should say here that my normal temp is 96.8.  That is very common in us 'zebras'.  But I was soooo ill, I got scared.  I called my Drs office got an appointment with the PA who checked me, confirmed flu type A and pneumonia.  Making sure we were doing all the right things I called NIH who had Drs calling me to get me through it, reassuring me and telling me when to go in to the hospital - but to try desperately not to go to the germiest place in town.

Steve was working on our daughter's barn helping his brother run electric in it.  I was home alone during that time - and the worst day.  I was terrified I would not wake up!  It was an awful feeling; I couldn't think, I could barely walk, I was just so very sick.  And the fear that I just don't know what this will do to me; will this be *the one* that takes me down?  The Drs have repeatedly told me one infection can go really bad quickly - and anything to do with the lungs is not good.  I had a mild case of pneumonia, but still the lungs were involved.

Anyway, guess who stayed in contact with me the entire time?  Oh - Steve was in and out, but working... it was a special person Rashann from my immune deficiency board.  She was ready to call for help the instant I needed it.  My sister Liz also called, but knew how sick I was so she tried to let me rest.  Thank God for them.  Steph was battling a bad case of the flu as well, we likely picked it up when we went to the race, so she couldn't help.  Yes, it was a tough road to hoe alone, but I got through it and am still battling the pneumonia - which is getting better, just not on my terms: FAST ENOUGH.

All of this to say, I am over it.  I am scared, I am always freaking sick with one thing or another and quite frankly I never remember *not* being sick.  Ever!  I have no idea what is going on when I am ill.  My body seldom knows what it is fighting so it kinda swats like a maniac fly swatter - making this and that feel out of whack - but not letting me know what to really IS out of whack.  It is a constant guessing game for Steve and I.  It even plays with bloodwork to show what is wrong, because we all know the immunity system is largely what makes the blood work numbers, right?  If it ain't there, it can't.  Back to the guessing game.

I try to smile and make others happy when I am out and about, but in my home, I am always struggling.  Always. Poor Steve.  Sometimes I try to cry (no tears - that other story), but mostly I mess around the house, clean, laundry the usual and then ignore it and I go into my happy sewing room and play.  I love him so much for being there for me every year we have been together.  It is only in the last 3 years we know why I have been so ill for our entire married life.  

There is a REASON.  I was not a hypochondriac like so many Drs have blatantly said.  I have been given bandaid patches from a Dr and told to apply daily to my side when there is pain.  (!)  I have been given NIL pills and told to take every 6 hours for a month and return.  It SAID NIL on it.  Really?  Am I an IDIOT?  NO!   They were idiots because they never looked for the 'zebra' in me.  

NOT MY FAULT!  THEY are the Drs.  When someone stays sick 340 days a year, THERE IS A FREAKING REASON, IDIOTS!  There I said it.  Every Dr who did this to me is an idiot and I will always feel that they let me down and doomed me.  And sadly, no one can take it back or make it better.  Do I grieve?  Yes.

Just because it looks like a horse, runs like a horse, makes noise like a horse and whinnies like a horse - it doesn't necessarily mean it is a horse.  It could be a zebra - but, you might want to take a second look to be sure - or to properly diagnose.  This could have been stalled - now it can't.  "No hope.  No cure."

There is more - but not for today.  I just needed to vent.  I look normal, often walk like a drunk (the later part), act normal, run from coughs, cautiously go places, eat more sensibly that I ever have, I stay away from kids unless my granddaughter is riding a BMX race I really want to see (where I likely picked up the flu), or I am going to hug those grandsons of ours - and I try to live as normal a life as possible in an imaginary germ free (ha!) bubble.  I stay out of big groups unless I am feeling really brave - and then on alert all the time.  And I fight.  Always fighting to stay healthy another day.  Think of everywhere germs are.  Now stay away from them.  

This is my life.

Kids.  I love kids.  They are so amazing!  But they are very germy.  I don't need to be around them.  I have given up all Scouting activities, CASA, Library reading, playgrounds, fostering... I have given up the biggest joys of my life. I will likely have to give up my precious chickens - for germy reasons.  I hang out at home sewing and occasionally brave fabric stores.  I sneak into grocery stores listening for the ever present sniffles, coughs and of course steering clear of kids.  I walk away from the feverish or coughing cashier.  It goes on and on...

ICL sucks rocks.  It is not my chosen life, but it is my life.   I don't look sick.  But believe me, I am sick.  I worry often about death.  I worry about my stuff not being sorted, pictures marked, notes made, bills obvious, accounts tagged, insurance filed - and me croaking - then have nightmares of my sweet hubby and kids dealing with it.  I don't have the stamina to stay out of the way, much less do this by myself.  

So there, you have it.  Straight from the heart.  If I haven't called you, this is why.  Who wants to hear any more about my life?  This IS my life.

But I can just tell you that I miss each and every one of you very much.  Pick up the phone and give me a call sometime.  Lift my spirits with your beautiful voices and memories.  I am still here.  Hanging on.

Thanks for being here blog.  I do love you.  I just can't always be a happy, carefree person.  And people just don't *get* this dilemma.  Reality has set in.  And I can't always let others see that.