Do you really want to know?

No, no you don’t!  What you want is to hear “I’m fine, I’m good/great”!  You don’t want to know how I really feel, physically, emotionally or mentally!  I say that because YOU really don’t and because you REALLY DO NOT want to know!  It exhausting, it’s terrifying, it’s sad.  It’s cold, it’s hard, it’s my truth and it’s my life!

To wake up each day and know that you will be in pain and to go to sleep each night knowing the same is completely draining!

To know that I must depend on others to do things I should be doing is deflating.  I never thought I would say that I wish I could get down on my hands and knees and scrub my shower!  I COULD do that, but it would cause me pain that causes me to need to medication and it would shut me down for at least several days!  I need to at least be mentally present for my children!

Today is not a good day!  My husband is not in a good mood!  He doesn’t realize, no matter how many times we talk or argue about it, how his tone of voice with me or the girls sets the mood of the entire household.  And I just can’t explain it or try to make him understand it anymore.  I just don’t have it in me.  I’m tired!  Of thinking, of being, of knowing, all of it!

I’m tired of knowing there is nothing the Dr’s, or I on my own, can do to get those nerves in my back to separate themselves the way they should  be and I could get back to a life that is not just laying down or reclining with small “breaks” getting up to do a few puddly things until my back and leg start to hurt.

I’m tired, I hurt, and let’s be honest….  no, you really don’t want to know.


What doesn’t kill you….

They say, what doesn’t kill you, makes you stronger. That’s a hard pill for many of us to swallow!  Especially those of us with arachnoiditis or other incurable neurological diseases – among so many other difficult life sucking diseases!

Arachnoiditis has taken my life, as I knew it from me!  Many, many other diseases and illnesses have done the same for so many others, I understand that now.  It’s hard to see it, you just CANNOT understand it, unless you are in it!  Even I’m guilty!  I didn’t get people who were always talking about their illnesses.  I didn’t get people and how they could just be negative all the time and it was just one thing after another.  I thought “man, how can they be like this constantly!”  I didn’t want to hear about it all the time, and I understand that about people too!

But, unfortunately, now I understand it!  It is our life!  Everything we think about wanting to do revolves around our illnesses and how we can accommodate ourselves to make our pain or illness less punishing to us.  When I go somewhere now, I have to think about what kind of seating there is and how long I’m going to be there.  Because I’ll be damned, if it’s not the right kind of chair or too long, pain is coming to punish me. It comes daily anyhow, but to reduce it, to calm the beast, is the goal.  I cannot imagine how difficulty this is for people who were not homebodies before, as I have been!

I was just looking at a photo on my refrigerator a few moments ago.  It is a picture of my Grandpa on his last Christmas!  We always spent Christmas at home and went up after to visit my Grandparents, but we knew…. this would be his last.  So, we spent the holiday with them, trudged all our gifts 6 hours away to their tiny little farmhouse, so we could all be together on this blessed occasion for his last time!

He had cancer, it killed him!  He was diagnosed with esophageal cancer in October of 1993 and when the surgeon came out, he told us he had 2 years max to live, I remember the room going black and a part of me dying inside.  He lasted less than a year, a miserable, chemotherapy and pain filled year!

But, in that picture, knowing he was dying, he has the biggest smile on his face!  The face of excitement over getting a VCR as a Christmas gift!  I looked at that picture and I thought, how can I find that happiness on a more regular basis?  His faith in God was so strong, he was content in knowing that whatever happened it was God’s plan! I find myself there sometimes too, but then I think, how can putting people in so much pain be his plan?  Losing Grandpa did not make me stronger, it made me feel weak!

Arachnoiditis will never make me stronger, it will only continue to make me weaker.  It is a progressive disease and the more I do, the faster it will get worse.  My husband & I have chosen to do what we can (or for me – NOT DO many, many things I used to do), so that hopefully  the progression will be slowed or minimal at best!  I cannot bear the thought of losing control over my excretory systems or being paralyzed.  It isn’t scarier than heck!  So, I mostly, at this point, have fairly positive days!  Some days, I am pissed at what has happened, what I cannot do, that this cannot be fixed!

What killed Grandpa and how he found a place to be happy is what I seek!  For what has not killed me, has made me weak!



The Broken One

There are so many things I want to write about…. things whizzing and whirring and stirring in my mind.

Today was an “anxious” day for me!  I have no idea why, I just felt anxious most of the day.  I tried deep breathing, tried the essential oils “peace & calming” my brothers wife gave us!  I think I’d have to take a bath in the sh*$ to make it work, maybe.

I actually woke up not feeling pain this morning, which is surprising.  I thought I felt like old me, I miss her!  I don’t like not being able to help out as much around the house, no way I can hold down a job, and so far have been denied disability.  I like being a “partner” to my husband!

Rhianna sings a song and part of it says “Funny your the broken one, but I’m the only one who needed saving” My husband always seemed/seems to me to be the broken one when I think about it, but he saves me every day!  He came from a broken, non nurturing, your on your own childhood/life!  His father abandoned their little family, his Mother, along with his older brother & younger sister.  His Mother remarried several times and most, if not all of the relationships were abusive.

It is a miracle how amazing a man he turned out to be!  My man, who loves me and does so much for me and our two girls!  He was on his own paying rent before he even graduated high school and then off to the military.  He excels at everything he does, he is so smart and strong.  He reminds me very much of my Daddy, although my Dad came from a completely opposite background!

I often times feel like I do not deserve him!  We both came from bad relationships where our exes cheated on us!  We were clear from the beginning about it!  If you don’t want to be with me – if you want to be with someone else, just be honest and tell me and I’ll be gone!  Nearly 11 years later and we are still faithful, loving & strong!  Inseparable from the very beginning!  I told him I drove away from our first date that I knew I would marry him!  I still don’t think he believes me!  He oozed honesty, calmness, sexiness and a touch that made me shiver from the very beginning!

I am always waiting for him to come back to me, wherever he is and he isn’t always trying to get back to me as quickly as possible, just so we can “be”!  Just being together is enough for us!  I am comfortable, relaxed, at peace when he is near!  If there is such a thing as a soul mate, then he is mine…

So, as usual, I got off track!  I was so anxious and then this afternoon, I decided to go out alone and run some errands.  I ended up visiting with some friends/acquaintances for about an our & a half and I felt a lot better!  I often feel so isolated because of the pain that rains down if I overdo it!  It’s a lot easier to just stay home and have a relaxed day doing a few little things here and there and be “present in mind” for my family than to go out and all of us pay the consequences one way or another later!

So, my ramshackle mind and body made it through  another day, my kids are happy, my husband, though exhausted is happy!  And I am, well, let’s just say content for now!  For the night… until I lay down and start thinking or wake up tomorrow and start remembering things I cannot do!  Or start doing something and stop because I need help unless I want to be punished by pain later.

Scattered thoughts, broken dreams – painfully perfect days with people I wouldn’t trade for anything!


Thoughts of Tomorrow

You can’t forget it!  I mean, you can, but your penance WILL be pain!  I hate not being able to do the things I want!  I hate having to ask for help!  The last few days, I was just tired of sitting around and getting nothing done!  So, I did a few little things.  Stand and do this or that for 15-20 minutes at a time.  Sounds reasonable, right??  Do a few small tasks and then sit down and rest for an hour or two, take a Naproxen or some Ibuprofen.  Wrong!

It used to be, the things on my mind were “normal”!  Do I have food for the girls’ breakfast & lunches?  Do I have the things they like?  Do they have clean underwear, jeans?  Ahhh, I’m sick of looking at that water splattered mirror and the kitchen countertop area covered in papers and junk.  What’s going to be for dinner?  I need to get the kids outside for some fresh air, meaning, I need to go out and watch them.

Now, it never fails; I wake up and if I’ve been laying on my back for awhile, my low back hurts.  How much are my leg, back & ankle going to hurt today when I stand up?  Did I do anything in the night or the day before that will have caused some major change to have taken place?  Will my brain be functioning correctly?  Will I know when I need to go to the bathroom?  Will something be paralyzed today?  These, seemingly, should not be the thoughts of a 43 year old mother.  But by chance & circumstance, here I sit with all of these thoughts constantly running through my head!  Will I ever be able to enjoy a family vacation again?

Now, I tell myself over & over that there are those in much worse predicaments than myself.  I know this & I am grateful!  Some days, it is easier than others not to “feel sorry” for myself.  But as I’ve said before, this is a grief thing.  I and so many others are mourning the loss of the lives we were once able to have.  Thank God we have life, thank God for his mercies.  Thank God we have not been taken away from our loved ones.

I am not afraid to die!  But when I think about dying, I think of those I will leave behind and how they will cope.  I pray I will stay healthy long enough for my girls to grow up and get their lives established at least.  I want to be here for as long as possible to support my husband, my kids and parents – as much as I am able to at this point.  And sometimes just being there is enough.  I know it has been as far as my parents go – they’ve just ALWAYS been there to support me and listen to me.  Always backing me up, whether they believed I was 100% right or not.  They stuck by me.  I am supremely blessed!

I selfishly want my parents and my husband to be around for as long as possible, but I do not want them to have to cope with my death.  The thought of doing that to them makes me sick.  I wanted to be here to take care of my parents!  And, I still will be, as much as I am able!  I certainly don’t want them to have to take care of me.  My husband is doing an amazing job of that.  I worry he will get tired of it, of me.  He has to work to support us and do most of the household work as well.  It is not fair to him.

A few years ago, I was thinking – I’ve always been called an “old soul”!  I think about things, deep things, a lot.  I just thought to myself, this man, my husband – he really has made all my dreams come true!  Who gets to say that in their lifetime?!?  We don’t have a ton of $, but that means nothing!  We’ve had priceless time together!  We met later in life, so for me, I feel like it will never be enough!  I wish we had met and been childhood sweethearts, he is so dear to me!

So, my thoughts about my tomorrow’s have changed significantly!  But however painful, I still think it’s been perfect!  Perfect in the way that God has planned for me, even if much of the time, I do not understand it.