To A Dear, Dear Friend - "So Why Didn't They Come Today?" Part 2 ...

I wrote “So, Why Didn’t They Come Today?” because I was, as I say – very curious about the fact that I could receive seven different medications on time and miss only one. The one that for mere seconds the day before had led me down a path that let myself dream about what it would be like to not exist. I don’t want to be dead, per se – I just wanted a break – from the sickness, the pain (especially the pain), the guilt. Just to feel good – I’m easy – I don’t even care if I felt great – just a day of feeling good. And then I remembered the pills and that siren got to taunting me – but I put her in her place.

You see, in 1998 after 1997 and when I say 1997 I don’t mean the year – I mean MY 1997: Valentine baby Rachael, breaking my wrist, tornado hitting my house with Jessie and myself inside, re-breaking my wrist carrying a 10 year old daughter as quickly as I could downstairs to an interior room since she could not handle stairs well, accidentally setting fire to my house during the tornado cleanup … but still, mentally sort of doing fairly well.

And then, I made the AWESOME decision that I could no longer stand to be inside my house during the day – too many memories, too many ghosts, so I got a job in my field of Computer Science at Shell and started the first working day of 1998.

Driving home one night, Gary had told me that he would pick up the kids at their after school activities and head on over to the bike shop to pick up his bike. I said OK, bad weather ahead, I would get in the car and probably beat him home. Got in my car and headed home, but on a road with 3 lanes of traffic – being in the middle one when a HUGE hailstorm hits and everyone stops their cars because they are being pelted with golf ball size hail, you are kinda stuck. Had the radio on and listened to the broadcasters announce in a surreal play-by-play of a tornado that ripped through the mall next to the bike shop. Never mind that I had the wrong bike shop, never mind that Gary decided that the weather looked bad and took the kids straight home and made snowballs out of the hail, at THAT MOMENT IN TIME in the car – I was listening to a tornado rip through a place I thought that my family was standing near in a shop with 3 sides of glass.

Apparently something about sitting there helpless in the car watching my windshield die a gruesome death, and thinking that my family was being riddled with flying glass - something inside me … What? Snapped? Gave way? Gave up? Whatever it was, I started losing chunks of time and was diagnosed with PTSD (Post Traumatic Stress Disorder).

Which actually is NOT what this post is about.

Just background to the moment my mother showed up and flat out asked me if I was suicidal? I told her that things were so far from normal or fine or even good and I was so lost – wandering through Hell without an “Exit” sign in sight. I told her that I just didn’t want to exist anymore – I just could not take one more thing.

Apparently she took this for a ‘yes’ and made me promise her that I would never do it.

I did. And I very much intend to keep that promise.

So – even though I wrote that post – it was a writing experiment and really, truly just wondering why, since I had promised my mother that I would never take my life, wouldn’t my meds just not show up that particular day? Curiouser and curiouser …

A special friend read that post today and confessed to me that she has actually lined up the pills ...

So this is for her – I am posting it on my blog just in case someone else needs to read it.

The day I finally confessed to Gary that I had started a “Shit Storm” by blogging something that he had not read yet (wrote it Saturday and this was Tuesday) he read it and just shook his head … He knows me well …

But that night a rare thing happened – Gary was watching Glee. I don’t normally watch with him, since I am ALWAYS in bed, but I can hear it. That night a character in the show attempts suicide. I got out of bed and kicked Charlie out of my recliner and started to watch …

It was a regular Glee – lots of lovely singing, but there was one part that hit home and I want my friend to think about this. Whenever you think of me, or my post or you are about to line up those pills again. The teacher sits the students down to discuss something and asks each one to describe one thing they want to see in their future. They do and they were great answers. He then tells them that when he was a senior he had gotten into some sort of trouble and his dad was coming to pick him up and he couldn’t deal with the disappointment, so he headed to the roof of the school to jump.

He didn’t.

Then he goes on to describe all the wonderful things that he had experienced from that moment on … It struck just the right note in me and made everything seem so simple, so clear – so ridiculously obvious that I thought about it for days.

So here goes – I will never end my life because I don’t want to MISS ANYTHING! I want to see my son graduate from college, marry, perhaps a grandchild or two? (Ryan – I know you read my blog – no pressure dude – YOU HAVE ALL THE TIME IN THE WORLD FOR THINGS …) I want to watch my husband excel in his profession, help change the world in his own small way, rejoice in the beauty of a newly created piece of woodworking that will be perfect, of course, I want to see my parents a thousand more times, I want to watch as Jessie matures and as unsettling as it feels now – I want to watch her become independent from us and learn to live her life to the greatest potential that she can. I want to watch all my nieces and nephews grow and excel and make new family units. I want to see my siblings and my brother and sisters in-law a thousand times more too! I want to go back to Australia, I want to go back to Norway, I want to go to Egypt and see the ancient pyramids, I want to go on a cruise of the Mediterranean, I want to go to Greece and see the ruins, and I want TO PHOTOGRAPH IT ALL!

To my dear, dear friend: You have a beautiful family and beautiful grandchildren who love you and need you. You are going to watch them go through hard times and good times, you are going to experience new births, watch first steps, you are going to go to school plays, you are going to go to baptisms and confirmations and ordinations and advancements and honors and I KNOW – I KNOW THIS – you DO NOT WANT TO MISS A MINUTE OF THAT. So, put your pills away, my love – and give me a call. Inside you – you know that you are strong enough – you are! You have come this far … And I know that you have a million dreams you want to accomplish – just as I do.

My dreams …

I think I could go on for hours, but I won’t – they are my dreams, and while they might stay dreams … who knows what the future is going to bring?


Seriously?



I cannot wait to find out …

Well, So ... It Happened ...

Yesterday, as usual we had Jessie over. And, as of late, also as usual - I was in bed trying not to throw up and she and Gary were watching a movie in the great room because my head was pounding and I couldn't handle the noise. Most of the time they watch in the bedroom and with me in bed - and - well, there you have it - the perfect Dysfunctional Family 'watching' a movie together ...

As I was lying there she said it:

"Dad, I want to go home."


Home.



Not, the usual:

"Dad, I want to go back."


As I lay there and she repeated herself I realized that this was a first and a very strange, sad, heart rendering moment for me. I had absolutely ZERO emotional strength to deal with it. So I wiped the tears away, rolled over and tucked it deep, deep, down in my Mothers Heart to deal with at a later time.



Home.


In Wikipedia, it defines home as "a place of residence or refuge" and I was no longer that place anymore ... strangers were and a strange home was and I don't really know how to deal with that?

Way back in another lifetime and I was diagnosed with PTSD (Post Traumatic Stress Disorder) every mental health professional told me that I had way too many stressors and I needed to get rid of some of my mental baggage - because I refused to do what EVERY SINGLE STINKIN' professional told me to do first for my mental health: Institutionalize Jessie. I explained as clearly as a PTSD, befuddled, pissed off mother could that even if she was my greatest stressor - I was NOT going to just 'get rid of her' for my own mental health - then as gently as a very pissed off mother can - I told them to come up with another freaking solution.

Usually, often, since I was not going to do as they told me to, they told me that they could not help me - which, looking back now - was very clearly the case. So I stopped seeing those mental health professionals that seemed to have a checklist of how to fix someone and could not creatively come up with alternate solutions - disappointing - but that was just the way it was.

So, I read books and then I started writing. And then I wrote some more. And then I got really brave and started writing about some of the most terrible, terrifying, and heart breaking moments in my life. And I started to realize something. If I got it down on paper - just perfect - which took a LOT of time - months for some things - that all of a sudden I could just mentally fold that piece of paper and visualize locking it in a safe that resides in a deep, dark, special part of my brain. Then I slam the door shut - and that was that. All better. I could go back and re-read it if I wanted - but it was AT MY CONTROL not something that snuck up on me at a weak moment and jumped me in the dark.

This little trick of mine has been working for quite a few years. I'm not saying it is the perfect solution, but I get by.

Moments ago, as I was lying in bed telling myself I had to get up because I have something that has to be done today on the computer, I heard Jessie say "Dad, I want to go home." and all the feelings came flooding back and I realize that I will have to deal with this at some point.

Then I realized that I have been doing this for some time now - putting my 'moments' on my "To Get to When I Want To Live Again" list and it is getting rather cumbersome and lengthy. I also, while lying there 'flashed' on my safe - and was rather surprised and disturbed that my subconscious can warn me with a 'fake picture' of a safe - that is literally bursting at the seams with pieces of paper leaking out the edges of the door.

Not really sure what my subconscious is trying to tell me ... but I have a sneaking suspicion that is not good news ... not good at all ...


I think I need to find a bigger safe ...

Uggh ....

Oh, my goodness!

Was it only two days ago that I was actually THRILLED to be diagnosed with two viruses (mono and HHV-6) and put on anti-viral medication (among other things for my immune system)?

I remember this feeling, now ...

After going into anaphylactic shock on the IV medication I was giving myself, they yanked my central line and put me on high doses of whatever they were using to try to kill the Lymes raging throughout my body.

Didn't kill it ... almost killed me ....

So now we live in perfect symboisis - it has promised to stop munching on the cartilage between all of my bones (now that it is almost all gone and I have severe arthritis) and I won't try to kill it again. Seems to be going well - we are both still here ...

But those meds when I was trying to kill it - man - my stomach!

Uggh!

I was having a harder and harder time keeping my meds down and was sent to a gastroenterologist who shoved a camera down my throat. She then informed Gary and I that I had NO stomach lining left - and that it should be a problem for me, that is - if I wanted to keep food or medicine down .... digest food ... those sorts of things ...

Bummer - so more pills for the 'no stomach lining' thing and off the pills to try and kill the Lymes - we're buddies now, anyway ...

So - that feeling is back after TWO DAYS - count 'em - TWO: what? four or five pills? And here I am fighting that WONDERFUL feeling of wanting to lose my lunch - only - did I have lunch?

No!

Dude!

I am nauseated! Who wants to eat? But did get my meds in and know how to work it so I wont throw my meds up - a sort of 'life skills' I have learned in the past 20 years ...

It puts a kink on regular activity, though - pretty much trying not to throw up a bucket full of meds (yes, its a bit of a stretch - but not by much) takes about 90% of my waking effort.

I have a feeling this next 6 weeks until I get to go back and have the Evil Phlebotomist take her random amount of vials of my blood (somewhere between 15 - 20 I am going to assume ...) are going to be rather interesting ....



... and very non-productive ...

So .... Today Was The Day ....

The day that I went back to see if those 15/20 vials of blood the Evil Phlebotomist took would show anything wrong with me. I was terrified that everything would be normal. It sent me back to the days '93 - '98 when I went from doctor to doctor to try to find out what was wrong with me. They would do a cursory exam and when they couldn't find anything - in their infinite godlike wisdom decided that it wasn't that they weren't testing the right things - it was me (the crazy lady pretending to be sick) and inevitably ALL of them would end up sending me to a psychiatrist - HUGE message that this was all in my head. After so many years I started to wonder if it was really true ....

But it didn't feel like it was in my head. I was horribly sick - so I tried everything - meditation, biofeedback, herbs, Altertinative medicine, Holistic medicine, ANYTHING to try and get better and feel like I did on that beautiful day in April, 1992 when things were great and wonderful and perfect .... until I started throwing up that night. Then nothing was ever the same again - still isn't the same. Sometimes I yearn for one more day like that Sunday - just ONE MORE DAY - pain free, illness free, nausea free. It is very safe to say that I have felt like I have had the flu since that April evening - every day - every single day since April of 1992. Sometimes it can become rather discouraging ...

But I digress - I was back to the serious fears that she would find nothing and shrug her shoulders and, well - NOT send me to a psychiatrist. I was lucky enough to find her - an immune specialist who worked with AIDS patients and ran different tests than all the doctors I had seen in the past - and those tests showed that my immune system was seriously messed up.

And sometimes that cannot be fixed.

When I met with her back in 1998 and she was going over the tests that she had ran and was gently informing me that my immune system was wonky and might not be 'fixable'. She didn't recommend I see a psychiatrist - she asked me what she could do to make my quality of life better.

All I could do was sob. She had validated me - made me feel like I was not 'psycho' or a 'hypochondriac' or that 'crazy lady pretending to be sick'. She knew that sometimes you cannot be fixed, but wanted to help in any way she could to make my life, well - more liveable. I am deeply grateful for finding her - but I was slipping back into my old fears. Wonder if she couldn't find anything wrong? What then?

Well - Gary and I had come up with a plan. He came with me and told me in no uncertain terms that if they couldn't find anything, he would press the doctor as to what were the next steps, what were we going to do about this - to fix this. Gary can be more persuasive than I and he said if that failed with her that we would find another doctor, and another until we figured out the problem. I feared I would be back to the "Great Doctor Hunt of the Nineties" and was SO not looking forward to that.

So with some trepidation we met her in her office this morning. She had pages and pages of lab results. I started getting nervous as she started through the list - a little anemic - but nothing that some good vitamins (if I would actually take them) would solve. The Lymes was there - lurking in the background - but not active - just floating around like a the time bomb it has been since I got it in 2000.

Then she hit the viruses. And, oh, my - I have never been more relieved to find out that I had a raging case of mono AND in addition - something I had never heard of before: HHV-6 - she said it was herpes, but not really herpes. Not sure what THAT means. But said that I should be feeling pretty sick.

No shit? Really?

She then hit different parts of the immune system. I was sort of proud that actual parts of it were ACTUALLY FUNCTIONING WITHIN NORMAL RANGE - Go Me!

But some things - were off and needed to be fixed if I were to become a semi-normal human being again. One was my ATP (adenosine triphosphate) level was quite low. ATP is often referred to as the "molecular unit of currency" of intracellular energy transfer. ATP transports chemical energy within cells for metabolism (remember from Biology - the Krebs cycle ... anyone? anyone?). Therefore - low ATP means low energy ...

No kidding?

So - all in all my immune system is pretty screwed up ... but we already knew that didn't we? What was new was that I have two raging virus rampaging throughout my body that must be stopped!

What does this mean for me?


Of course!!!


More pills .....



*sigh*

I really, really can't keep track of all of them now. I need to chart a schedule and get one of those funky pill dispensers for people over 80 ....


... sad, very sad.



BUT!!!!




IT'S NOT ALL IN MY HEAD!!!!




WHOOO HOOOOO!!!!