Sunday, February 26, 2017

When Someone Dies...

You just never know what will happen when a loved one dies...

I grew up shuffled around between parents and relatives.  One of the constants in my life was my Aunt Connie.  She eventually remarried a man we came to call Uncle Ed and they lived happily ever after - for 37-38 years.  Steve and I (and our kids) spent lots of time traveling back and forth to Selma to see my aunt and uncle.  They were marvelous and fun people to be around.  Aunt Connie would have you in stitches the entire time were were there.  She was a hoot to be around and had a personality like no one I have ever met.  She was a trouble maker in a good way, a prankster, a giver, and lover and just a blast of an aunt.

One day Aunt Connie became very ill and went downhill quickly.  My sister, who had been partially raised by them, and I ran to see her, love on her and embrace them both.  It was a terribly disheartening situation, but we wouldn't have missed that last little bit of time we had with her.  Uncle Ed wasn't healthy either, but he stayed by Aunt Connie's side the entire time.  I can't tell you how much we enjoyed the visit.  It was a blessing to be able to be there even for a bit.

When Aunt Connie passed away, we stayed in touch with Uncle Ed while he was home; I am sure not as often as we should, but the pain he was in when we did talk to him was obvious, he was lonely, broken hearted and it made us wonder if we were hurting him more by calling him instead of letting him heal.  Oh, one of us called at least every week or so, but we didn't call daily.  His family kept tabs on him, and in a bit of time, they decided to have an estate sale and put him in assisted living home - which we do believe was a good choice.  He needed proper care, food cooked for him and out of the home they knew and loved - which was stuffed with wonderful memories, but also huge amounts of work, and not near family who could oversee his needs.  He needed change.  We agreed with that move entirely.  

We were notified, by a relative, of the estate sale (which we might have loved to shop at - not paw through) on Tuesday before it started a day or so later.  There was no way to plan a quick trip and absolutely no definite time the sale was to start.  Just "its happening", basically.

We dealt with it.  I cried.  Memories that I loved would also be sold at that sale.

Then Uncle Ed was moved to a facility near family.  No name.  Heck, not even a city!  You see, I never knew *his* family as they lived in another place.  I had only met them once or twice in all the years I went there.  We were just told he "was moved and is safe".

I asked for a phone number to call him.  "They don't want you to have his phone number, something about he can't hear..."

I asked for an address to send a card.  "I will ask if you can have one."  "They don't want an address given out."

I ask how he is doing.  "Oh, he is ok..."

I ask for a number to call his kids.  "I will get it..." but no one answers the numbers we were given.

I am sure this was difficult on the people sharing this tiny bit of information because I can only assume they were really put on a spot.

It has been well over a year since I have heard jack squat about Uncle Ed because those vague answers and evasion tactics simply hurt deeply.  I have never, ever hurt the man, I have not stolen from him like his own son did, I have fought for him and Aunt Connie when his son *did* steal from them.  I am only ever guilty of loving him deeply, very, very deeply.

Why are we kept out of his life?  I don't get it.  *I* have never done anything except love them unconditionally.

The hurt is deep.  The missing him during his transition was deeper.  I couldn't hear his voice, I can't send him a card, I can't share these precious pics of them.  There is anger, there is disbelief - but mostly there is a deep sadness and sense of loss.  I don't understand at all.  I have no concept of what happened.  None.  Nada.

How many elderly people are tucked away in a home and led to believe no one on earth is left that cares for them?  Is this why?

So as I am sitting here sifting through memories through tears, but I can only hope he is ok.

So here ya go, please enjoy a few pics of some of the most precious people on earth:

Just an aunt and an uncle who happened to be some of the most important in my life.  I lost not one, the day I lost my Aunt Connie, but I lost both.

When someone dies, you just never know who else you will lose in that process - and probably won't have a clue as to why.  

I was never the 'bad guy'.  Never.

Friday, February 24, 2017

So, January 2 I Started a New Diet...

The pain I have lived with so many years just kept getting worse and worse.  My ankles could not support me without causing misery.  I had to go to a physical therapist/ chiropractor several times a month just to survive.  I couldn't walk far without stopping I tears.  My entire body was inflamed and ached through and through.  My bones even hurt!  I gained more weight, of course... if you can't walk, excercise or move without agonizing pain, how could I not?

I had a friend that I had met in Bayou Vista call me probably in Nov or Dec last year.  I met Renee inTulsa while her hubby was at a gun (?) show.  We went to lunch, laughed, talked and had a wonderful visit.  During the visit, of course we caught up on each other.  As usual, my frustration was high, I bawled and she sat and listened.  She hugged me.  She prayed with me.  And she suggested a large part of my pain was food.  Here we go again... give up bread, sweets, all the good stuff...

But I shut up and listened.  I hated where I was in life - killing myself with anger (at myself), food, self-pity from my circumstances and bery, very ill.  Why bother?  But,  I listened.  And it clicked.  What would it hurt?  So after separating, I researched for weeks and finally came upon the Whole 30 Diet.  It takes away all the bad stuff for 30 days; you only eat meat, veggies and fruit.  No limit on amounts, just don't have anything else.  You only commit for 30 days before reintroduction of potential problems; one at a time.

I did it!  It was a very difficult month and when I wasn't strong, Steve was strong enough to redirect me.  And when I started adding the food back, I found my inflammers!



I have mild reaction to gluten, corn and dairy - but very tolerable even when I do indulge - which is few and far between.

Not so with sugar or beans.  I cannot function.  At all!

So, now I am very aware of my inflammers thanks to the Whole 30, and I stay away from them.  And since I am aware of what I put in my mouth, I watch... and  I can walk... and the weight is coming off!

And more importantly

While I do have pain, it is no comparison to what I suffered prior to this diet.  I can now focus on getting as healthy and enjoy the life I am living!

That is sweet.

Thank you Renee.  You saved my life.  ❤️

Wednesday, February 22, 2017

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.

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