You Know, Like Groundhog Day

In September of 2014, infection was discovered in my husband's chest (where it was cracked open for bypass surgery four years earlier). He underwent a debridement and was left with an open wound 18 cm long.

For the next eight months, we did everything we could to heal that wound without surgery. We eventually caved and Mark had a plastic surgeon perform a muscle flap procedure, after which he spent a month in a rehab facility with strict sternal precautions.

A month after returning home, two small abscesses formed on Mark's chest. He went to the ER and was admitted to the hospital for several days due to infection. He came home on both IV antibiotics and an anti-fungal.

Just as those two small wounds were THISCLOSE to healed, another abscess formed right in the middle of his chest. A CT scan was done and Mark was referred back to a cardiothoracic surgeon.

My Anxiety

For me, anxiety manifests in mainly two ways:

1. All the terrible, awful, scary things that can happen flash in my head.
2. I become Chicken Little crying, "The sky is falling, the sky is falling!"

The View From Here: I Want to be a Monster

This week my BFF who runs a weekly recipe blog came to me saying:

"I have a submission for your guest series if you feel so inclined."

And I said YES, thankyouverymuch because I failed to have

anyone signed up for this first Thursday of August!

It's like she knew.

For future reference, you guys can totally hit me up like that.

Her name is also Jennifer and her blog is Mom Rocks Mealtime.

Her post for me, though, has nothing to do with food.

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I Want to be a Monster

The city in which I live, the town in which I was born, the place I have chosen to raise my children has turned into the Thunder Dome.

It all started a year, maybe two, ago when I noticed people no longer returned my smile and wave when I give them the right away to cross the one lane bridge by my house. Soon, that bridge was covered in graffiti.

Spooked Ya

Fairy tale books and fantasy-filled movies feed a child‘s imagination.

Mostly fanciful. A touch frightening.

We assume it’s innocent.

Choosing My Battles

The pearl "choose your battles" might be most helpful to keep in mind when it comes to parenting.

(Also marriage....seriously, why do we subject ourselves to these things?)

I don't know if you've noticed, but I'm not in the habit of giving parenting advice. No, no. When I write about parenting it's merely to talk about something I've learned, and I want to share in case it might be helpful to someone. Because I am no expert. I'm just a mom, figuring it out as I go.

For example, I recently decided I'm going to mellow out about my son's sleep habits because I have bigger fish to fry.

I know, sleep habits are a BIG parenting issue, so how could I possibly give up that particular battle?

At the End of the Day

Just last week I confided to a couple of my friends that regardless of how much I generally wear my heart on my sleeve, I still think there are a few things I can't, or shouldn't, say.

Also, I do get very tired of harping on the stuff I deal with. It is what it is.

Of course, though, a big reason I blog is to air it all out, to share my life perspective. For the benefit of GETTING IT OUT,  and if, perchance, someone in a similar situation came here and felt like somebody understands....

Life is a mixed bag. A big, jumbled, tissues, chewed bubblegum, hair clips, chap stick and change in the bottom MESS of a bag.

There are things that you make happen, whether intentionally or not, and things that happen TO you.

For example, wanting to have a child. I wanted that and made it happen. On the other hand, my eye problems happened to me. That was not something I wanted.

I'm not sure how to categorize my husband's health problems.

I met him as a visually impaired Diabetic. I married him as a sighted kidney-pancreas transplant recipient. Now, and for the last almost 12 years, Mark is a Diabetic on dialysis with multiple heart conditions.

Mark and I made the transplant happen. But the rest of it? Happened to him/us. No one wanted any of it. No one wants any of it.

They say it's not what you're given but how you handle it that matters. I tend to agree. More on that later.

Because sometimes I get disheartened, even angry, about what we've been given.

Did I ask for a sick husband because I married him knowing the possibilities?

I don't think so. Even when two people getting married are both perfectly healthy and they say the vows "in sickness and in health", they don't really think about the possibility of sickness. And perfectly healthy people can develop health problems down the road.

When you get married and say those vows, though, you sign up for it all. In our case, "it all" is a lot. Not as much as some, but more than most.

I didn't want to be worried all the time. I didn't want ever to be faced with the idea of being a young(ish) widow. I didn't want to deal with nasty low blood sugars that take everything out of both of us. I didn't want to feel like hospitals are my second home. Regardless of how informed I may or may not have been on my wedding day, I didn't bargain for the disease(s) to lead to a loss of intimacy with the love of my life. I didn't want every cough, sneeze, ache and pain my husband has to make me think about worst case scenarios. Every. Single. Time. I didn't want PTSD because my husband has had to be shocked back to life on more than one occasion.

To know the itemized cost of resuscitation. How much a life is worth. Around $346.

I never wanted to feel helpless sitting at home because I cannot simply jump in the car and get to wherever Mark or one one of my kids is at a moment's notice. I never wanted to feel like this life, these limitations, are holding me back, that there are things I simply cannot do. That because of all this crap, I have so many worries, and I hesitate. I question. I fear. I am damaged.

And yet. And yet I am happy.

To know true and abiding love. To be a mom. To have sweet and generous family, and caring friends. My little house and big, fat cat. That I'm not totally blind, and that, despite everything he's been through, Mark is a fighter.

How we handle the things we've been given? I can now hold my head up and own that we do it with courage and grace. Because having to wage war on the crap life throws at you gives you the perspective to truly appreciate the good. To focus on it. To nurture it and help it grow BIGGER than the bad.

This is what we try to do every day. Sometimes we're not successful. But mostly we are.

So yeah -- and I'm saying all of this as much for myself as for anyone else -- we have to deal with some tough stuff. Sometimes it really sucks. There are things missing; things we want but can't have. I will never sugar coat it.

But we have the most important things that at the end of the day are all anybody really wants. And we CHOOSE to let those things fill us up.

Looking a Gift Horse in the Mouth

Last September I wrote a post titled Coping Mechanisms in which I explained why I don't jump for joy over good news about my husband's health.

Now, it's been over a year since Mark has had any sort of stay in the hospital.

It's kind of freaking me out!

The saying "don't look a gift horse in the mouth" means to not nit-pick a gift. Just be grateful for it.

I am grateful.

But.....

Our gift horse is scarred.

Over this past year I have gone from thinking my husband was dying, to he may not have much time left, to how is he still here, to maybe he's actually going to be OK for awhile still....

My heart has been FULL of gratitude and awe over the course of events.

My mind, on the other hand, is confused and bewildered.

When someone is mis-diagnosed and things don't go the way they should have, it makes it that much harder to comprehend what did happen.

I cannot stress enough just how SCARED we all were last March that that was it, the end for Mark. It's what the doctors were drilling into our heads. They had no hope, so how were we supposed to?

It still makes me very angry.

Because they screwed up so badly, I am left questioning if he was treated properly AT ALL. Even since the re-diagnoses from A-Fib to V-Tach and receiving a defibrillator, I still wonder if THAT was necessary. Since he's had it, it has helped with the pacing of his heart less than 1% of the time and he has had zero arrhythmia and no shocks from the device.

Does he even need it?

But whatever. It's a safety net and we'll take it.

And I find myself thinking, is Mark somehow healthier now? This is where the gift horse comes in.

The answer is no. It absolutely is. It may seem that way on the outside looking in. His heart may be doing fairly well. But Mark is still struggling with many other things. Things that will not get better.

He may not have had to be treated for something during a hospital stay for over a year now, but that ultimately doesn't mean he's OK.

What it means to me is that God has granted us a reprieve. That last March was so awful, so traumatizing, that we earned this break. This TIME.

And I'll take it. Oh yes, I will take it.

But I do look the gift horse in the mouth.


Linked with Pour Your Heart Out.

Strength and Fragility

On most things I am a middle of the road kind of gal. I see shades of grey where others see only black and white. I am uncomfortable with extremes.

Yet there is something I have noticed about myself. Something that was, and still is, somewhat confusing and distressing to me.

How can I have the strength it takes to walk the path I am with my husband and his poor health, and also feel so very fragile, insecure and vulnerable?

You know, I grew up in the talk show era, with Phil Donahue and Sally Jesse and Oprah. And now we have Dr. Phil. I bow at the altar of Oprah and her "live your best life" and "light bulb moment" mantras. I am not unaware of the idea of an inner child.

For some reason, though, I didn't really think I had one of my own. I naively thought events from my childhood hadn't been that big of a deal, hadn't effected the adult I've grown into.

But there are these triggers....and a pattern....and when you sit down with someone trained to see them and how they pertain to the bigger picture, you can see them too.

My therapist can so easily point it all out, like I should have known all along where most of my insecurities have come from. And when I think I'm pretty sure I know where they're coming from now? My fear of ending up totally alone? He says no, not really.

Yes to FEAR, but it's my wounded inner child that feels the brunt of it all. This is why I can have both the strength I need for Mark, but still feel insecure and vulnerable in other areas of my life. There is a separation between your adult ego and your child ego.

Yeah yeah, I'm psychoanalyzing quite a bit here. I find it fascinating. Especially about myself! That I still have so much to learn about myself at my age is amazing to me.

The most surprising thing I've learned this week is that I, Miss-Open-Book-Wears-Her-Heart-On-Her-Sleeve-Blog-It-Out-for-the-Whole-World-To-See-Give-the-Benefit-of-the-Doubt, have some trust issues.

I can rationalize till the cows come home that there's nothing to worry about. But feelings are not rational. They are your feelings and you will have them whether you want to or not.

The problem lies in when your feelings lead to irrational THOUGHTS. This is a huge issue for me. I have the ability to bury myself in irrational thoughts. Everything from having a sudden flash of one of my children being gravely injured, to being told Mark is dead, to losing my friends. Those thoughts feel like a sucker punch to the gut. I can literally lose my breath for a moment and immediately feel tears stinging my eyes.

But none of those things happened. I believe we call this anxiety, kids.

So yeah, I'm apparently a huge mess of a person. But on the other hand I'm not. How do these things work together to complete the picture of me? I haven't figured that out yet.

I'm working on it.....

Guest Post: Time Out for Mom

My mother-in-law and niece arrive today. When I asked for guest posts to help fill up the six days they'll be here, I didn't mean that I was asking for someone to tell the world what they love about me.

But my friend Leslie, aka RoryBore, at Time Out for Mom is exactly the kind of sweetheart who would. I shouldn't be surprised, but I am. I'm surprised, flattered and touched.

Even more, I am so happy to know that what I have in my heart, and what I pour out here in so many of my posts, is SEEN and FELT. Thank you, Les!

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I am so happy to be a guest at Just Jennifer today!

First of all, she is funny, sweet, kind, and bare-bones truth.Totally dig that about her.

Also, best Tweeter I think!

She sent me a pretty darn nice Christmas card.  My husband didn’t even get me a Christmas card this year.

But mostly, it’s because she is kind of a hero of mine, and everyone should have the chance to be up close and personal with their hero: just once in life. Don’tCha think?

If you are wondering why someone who refers to themselves as “Just Jennifer”  could possibly be a hero, well –  I am glad you dropped by. Sit awhile; I’ll tell you a tale....

Once upon a time, a self-professed simple girl wrote a blog post.

Within that blog post was the following:

Because that is pure bullshit. No one should go through life not grabbing onto the things they want, their heart's desires, for fear of the maybes and what-ifs.
That is not a life well lived.

Elsewhere in Bloggydom, another simple girl living a fairly simple life was so emotionally raw after reading this post, that she didn’t even leave a comment. Although, she may have stood up and cheered, “She gets me. She really gets me!”

You see Jen and this other girl -- okay fine, it’s me -- have something in common. It’s an odd kind of thing to have in common, and yet, there it is.

We both fear for our husbands’ lives. Daily.

In her case, it’s a health issue that might steal away the love of her life and the father of her children.

Whereas, my love goes off to work each day and dives right into danger. And one day the violence he tries to keep from suffocating this world, may win……and he won’t come home.

It’s not that I don’t think about the danger my husband might face each time he walks out our door and steps into his cruiser. I worked in a prison – I am very much aware of the evil that is out there.   That it’s his job to stop. I just can’t let that realization overwhelm me.  Otherwise, this home would become a prison of its own kind. And all I strive towards would be rent asunder: a house of fear instead of a home built of love.

Despite these differences, we two will still be the ones left behind on that fateful day. To tell our children. To face all of our tomorrows alone. To find the means for life to carry on.

How does one achieve a “life well lived” under such a constant threat?

Because in our hearts:  he will linger.

As will all the moments that came before. The trick, and this is truly the hardest part, is that we can choose how those moments will play out. We can live with the shadow of fear hovering over us. Or, we can grab onto all the joy and beauty of this world and hold on tight. Let it surround and fill us.

And maybe, just maybe…if we can do that, it will spill over onto everything and everyone around us. That is where Jen excels. That is why she’s kind of my hero. It’s not because she doesn’t have bad days or struggle with the realities of her life. It’s because she does all that with honesty, and grace and somehow always seeing the positive. Her expressions of gratitude overwhelm me. And all that good energy spills out from this, her “simple” blog home, and unto us. That is the light she shines into this world.

Life will always be a roller coaster. Rain will always fall.  Some will give up. And who could blame them?

But that’s the easy way. The strongest, like my friend Jen, will choose to hold on tighter in those moments. To not run away, or hide, but face the storm with all the strength that is within them.

And sometimes; we may simply choose to dance in the rain….just because we can.

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I shall leave you with the following quote (which I have no idea if Les knows is one of my favorites):

He Struggles Too

This is my blog, named after me. This is where I write about life from my perspective.

My feelings, thoughts, revelations and struggles.

Also the light-hearted, fun, whimsical stuff.

But the meat of of it all is the REAL, somewhat intense stuff I share. That I NEED to express lest it bore a hole into my soul.

I talk about my husband Mark a lot. That is because he is chronically ill and everything that entails is difficult and unique, and talking about what we go through is therapeutic for me, and might help others.

What I have either failed to see for so long, or been in denial about, is that Mark has his own set of struggles. His own angst, fears, worries and trauma.

Mark is a man, so it can be very hard to see it. Men are not known for wearing their hearts on their sleeves. They are not known for being able to express themselves and their emotions.

Males are taught to suck it up, to be tough, not to cry, to hold it together. For as much as many women say they want a "sensitive" man, I've found that it can actually be disconcerting when a man cries. If we're really honest, we want them to be the tough ones, the rocks.

Mark has always been a "trooper". Positive and upbeat, a believer in "this too shall pass" and "they haven't found a way to kill me yet". He makes ER visits somehow fun. Despite his many health problems, Mark has always been able to make light, to find the funny, live in the moment and focus on the good.

There comes a point, however, when even a man can't "just hold it together" anymore, when he needs to express some shit too.

Since last March when Mark experienced arrhythmia and we thought he might be dying, the two of us have had some very frank and HARD talks. Talks during which I try to shut up about my own feelings a little bit, instead trying to draw him out. He really tries not to let me, but I stay quiet because I know he'll fill the silence. He often thinks what's bothering him is some inconsequential thing, but it turns out to really boil down to his health and mortality. Every fucking thing comes back to that!

Mark doubts that he is enough man because his body gives him such a hard time. He thinks he should be doing something more for the kids. He worries he's a burden. He wonders if it's worth it and he wonders about the afterlife. He wants to know what it's like after we die because he's scared.

I sit and listen to these things, my heart breaking. I reassure him that WE LOVE HIM WITH ALL OUR HEARTS, the kids are fine, he does enough and that I feel pretty certain he doesn't need to worry about what will happen to him after he dies.

It's all the truth. I think it helps some. But I don't really know. If these things needle at him even half as much as my crap needles at me....

All I can go on is what I see and feel. It comes and goes. Mostly comes. I think about some aspect of all of this every single day. I'm sure Mark does too.

It's hard. It sucks. It sucks hard.

Life itself doesn't suck and that is what we both cling to. We continue to make light, to find the funny, live in the moment and focus on the good. We laugh at each other and giggle with our kids. Shitty thoughts come and we will them away.

I implore Mark to not let the bad stuff win. We can't let it win.

I am such an idiot!

Never mind the fact that I Googled "half of 2/3" while baking this weekend.

::Face palm::

That's a minor thing.

No. I proclaimed more than once over the summer how I was looking forward to September, starting a new chapter with both of my kids in school full-time.....

It was gonna be great!

And it is.

But.

It was a CHANGE. A pretty big one. And I'm not always the best at change.

I have to warm to it. The idea has to grow on me. Then I'll be all, "Bring it on!"

One would think this was happening over the summer. That I had ample time to be ready for this new normal.

Apparently not.

When September 5 rolled around and my little boy was gone just like his big sister, it broke me a little.

Not so much that day. More like as the days marched on and both my children left me for six hours of each one. It started to sink in. The change had come.

I became a mess.

If I really think about it, it's not so much that something changed. It's not even really that it has to do with facing my babies growing up. At the heart of it is the fear and anxiety I write about so often.

This is why I'm an idiot. I should know by now that a change like this can set off a chain reaction of crazy emotions inside me. I should have expected it and planned for it.

I'm doing much better now. I've found a new routine and have plenty to do. And I like it. But man, I wish this past month had gone differently.

How do I proceed?

I thought I was doing just fine. Thought I was moving through my day-to-day with an ease and grace in the aftermath of what we experienced last March.

Because I am beyond grateful and living in the moment.

And then BLAM! I am smacked in the face with nerves and worry and insecurity.

I am FULL of anxiety.

Perhaps I can blame my kids going back to school leaving me with time to think. Thinking is not always a good thing.

__________

At first I assume I'm feeling insecurities because my friend and I aren't talking as much as we sometimes do. This is my go-to feeling. I've felt this many times before in my life.

Why hasn't she called me?

Why hasn't she texted me?

Is everything OK?

Did I do something? Is she mad at me?

Doesn't she care about me anymore??

Try as I might not to say these things to my friend, I always do. I vomit them all over her and she doesn't know why. She doesn't think anything is wrong. She's just going about her life.

I get offended that she doesn't see it. I think she's being mean to me. Cold and uncaring.

I take a breath. Maybe the angel of friendship (there must be one, right?) whispers in my ear. And it occurs to me that it isn't really about her or our friendship at all.

It's something else entirely. I apologize profusely to my bewildered friend. Who, as a matter of fact, is very concerned about me.

In my utter confusion as to what is really going on with me, I have hyper-focused on entirely the wrong thing. It's an easier thing to focus on than the real issue at hand.

Which is, my ever-present fear and worry of losing my very best friend and soul mate forever. Not my friend whom I've just dumped on, but my husband, my kids' dad.

__________

It has been needling at me for pretty much two full years now, since Mark's bypass surgery on 9/21/10. A year after that I thought it had been the worst night of my life. Until 3/1/12 when Mark's heart stopped again, this time due to arrhythmia.

There was so much talk of death last March. I will never forget how my knees buckled in the middle of the ICU floor hallway when my MIL, dealing with her own fear and worry, bluntly stated, "Well he is going to die." My mother and father both reached out for me, ushering me into a Quiet Room, all of us trying to absorb strength from one another.

We really did think that was going to be it. All our worst fears were about to come true.

And then they didn't. Mark said, "I'm not dead yet!", and proved us all wrong.

I'm not saying it was a miraculous recovery after which all was right with the world. Far from it. We still have much to deal with, and will for however much longer Mark is with us.

And, I think, therein lies the problem. No matter how grateful I am that my husband is still alive. No matter how much I "live in the moment", "soak up the good" or "hold onto joy", I am traumatized. These near-death experiences are haunting me.

Oh and it makes me SO ANGRY! I hate that it's impossible to let go of. That I'm not strong enough to beat PTSD's ass. That it's f*cking with my head.

So now what?

My friend urges me to seek out counseling. I remind her that I did last spring but it seems that if my husband wasn't actually about to die, I don't really need it. It seems that if you're simply having a hard time and would just like to have some help processing, no one knows how to make that happen. I figure with my or Mark's or our kids' insurances, somehow, someway we should be able to afford it.....but I haven't found a good option.

I may ask my doctor if he thinks we should up the dosage of my anxiety med. I take only the smallest amount right now. I will probably start taking the Vitamin B6 my dad swears by....

Regardless, what I know today is that I have to keep swimming. My family needs me. And I can.

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Update: I didn't intend to publish this for a few more days; I hit publish accidentally. There is an option to "revert to draft", but since I didn't realize what I did until I started getting comments, I kinda gotta go with it, right? Also, the comments are so nice, and since it's World Gratitude Day, I will just be grateful for a happy accident.

Coping Mechanisms

Are you OK?

I have no idea how many times EACH DAY I ask my husband that question.

But I know it's a lot.

While he's still sleeping (if I think he's breathing funny).

Mark.....are you OK?

Shortly after he gets up.

How are you, Honey?

If he starts yawning a lot or can't finish a sentence which could mean his blood sugar is getting low.

Do you need to eat?

When he grunts, groans or moans.

Are you OK??

__________

I worry about Mark. So much.

It's not as if I don't have ample reason to worry. The fact that his heart stopped 6 times in 2 years is enough. Not to mention diabetes and dialysis.

So you can understand why I might not jump for joy when we get a little bit of good news. I may think "well that's good", but I don't feel all that much relief.

We recently found out that Mark's heart pump function has improved since his arrhythmia trauma last March. At that time it was functioning at only 25%, but now it is up to 45%.

This is good news and I spread it, because I know the people who care about us want to know these updates.

On our family Facebook page:

Which I also shared to my personal page. I then posted on my blog fan page where it got 13 likes and a couple of comments. I tweeted and got a few excited replies.

But do you see above how I merely stated the results? No expressions of excitement, no !!! or :-).

It's because there's just a lot to factor in. Sure, this is a bit of good news, but.....

The thing is, too much has happened. Mark has too many health problems that pose various threats to his stability for me to naively celebrate ONE good test result.

This does nothing to reassure me of how much longer my husband will live. How much longer he can push back against all that is trying its damnedest to shove him to the ground.

Mark is an amazing and inspirational testament to the strength of the human spirit!

But....

So sue me if I can't be excited that his heart pump is stronger.. I have to look at the whole picture. I have to keep my head out of the clouds.

I have to be only cautiously optimistic. It's a coping mechanism.

I fear it may come off as cold and callous. That is the opposite of what I really feel. In fact, I feel so much, that if I don't employ a way to deal, I'll absolutely end up a puddle on the floor.

Maybe what some see as cold or callous, is actually strength.

Strength and self-preservation. Because watching someone you love so much suffer with health problems, as well as live with the fear of losing them, hurts. It hurts bad.

There is a constant battle going on inside me to find a balance between the stress and fear on one hand, and the gratitude and joy that my husband is still with us on the other.

So I feel and process. I deal and find gratitude. I self-preserve and I get stronger.

Or it's really just fear and denial. I honestly don't know which. Could be both or all.

All I know is I have my ways of coping. Right, wrong or indifferent....

What more will there be?

There is nothing fun about chronic illness.

Dialysis source

You adapt and manage, make the best of the situation, live life the best you can under the circumstances.

source
Have always loved this quote.

Illness causes more stress, worry and upheaval than nearly anything else. It's kind of true what they say, that if you don't have your health...

Nothing else matters as much as how the person is doing on any given day. Because if anything is off, everything can go off.

As someone who loves a chronically ill man, I am scared and worried. All. The. Time. I accept that the problems are there. Accepted that a long time ago. But I need the status quo. The everyday norm that is just dealing with Diabetes and dialysis. When more comes into play, I want to bury my head in the sand or crawl under a rock or run around screaming like Chicken Little, "The sky is falling, the sky is falling!"

Do I kinda look like him?

But I don't. I did go through a phase after Mark's bypass when I felt like many things were piling up and feeling really heavy. I wasn't able to separate things that came along after the experience of the bypass and what transpired after, and I would easily lose my cool over every new deviance from my norm. It snowed right before Thanksgiving so the kids had the entire week off rather than just the 4 days, and I wanted to scream. Not because they were home, but because they weren't supposed to be home. I hurt my back three and a half months after Mark's bypass, but I felt like it was just one more thing to add to the pile. And I was pissed! But enough time eventually passed that I no longer lumped it all together.

I may be doing it again, however, since Mark's arrhythmia and ICU stay last month. I feel myself keeping a running tally of the crap.

In my head: So first it was the arrhythmia and 13 day hospital stay, complete with near death experience. Then Camryn brought us a cold which gave Mark bronchitis, and then his blood sugars got difficult. Then I have to go have a physical of my own and think about stupid birth control...

Even though one thing did happen on the heels of another, they aren't related. They're separate issues.

I tell myself this, but what I really want to do is stomp my feet and curse. But that's not socially acceptable. That's what I always tell my children, isn't it? But I'm just so floored by the fact that Mark now has another issue with his heart on top of coronary artery disease! Why is this necessary?

Oh right, because he's Diabetic and on dialysis.

I really don't know if I'm coming or going, don't know which end is up, down or sideways. I've been jerked around quite a bit lately. I'm dazed and confused, and it wasn't even any fun getting that way!

And I ask myself: how much more is there still to go through? How many more crisis, hospital stays, scary phone calls in the middle of the night....fears and tears. How much does Mark have left in him? How much do I?

I wish I could know. Mark does too. He told me he thinks it would be easier to know exactly when he will die so he could say and do all the things he feels he needs to, knowing how much time he has to do it in. This is not something people normally think about.

And what about my children, my babies? Camryn is 11 1/2 and suddenly afraid of the dark again, needing to leave the bathroom or stairwell light on when going to bed. AJ is 6. Lately whenever Mark isn't home he asks, with this little worried tone, where he is. I just know he's thinking about Daddy having to go back to the hospital. These are subtle things that maybe only we as their parents would notice. But just the fact that there's something to notice...

One thing I know for sure is I'm actually pretty strong, and I'm not alone. Yet I wonder just how far that strength can carry me. Will I weather the storm with grace, or will I crack under the pressure?

source

What can I say?

What's that I've got up there as my tagline? My life is a roller coaster? Yeah. That.

Not only that, but there are roller coasters WITHIN the roller coaster of life. The past two weeks have taken me on one helluva ride.

And it's not even over.

I'm not even going to be coy with placing links within my sentences. Here is a list of what I've written since the first of the month:

• My Husband is in Critical Care
• A Critical Listcle
• Still Critical
• TGIF - 3/9
• A Sick Heart

Today I am trying to process everything. After thinking my husband was about to die, I got to bring Mark home yesterday. I am amazed, overwhelmed, happy, stunned....and thinking WTF??

WTF because, WTF just happened? HOW-TF did he survive what he went through? And, WHERE-TF is this going to take us from here?

I need to be clear. It is amazing, and quite possibly another freaking miracle, that Mark is home with us right now. But he is still sick. He is currently stable, but that could change at any moment. Today, tomorrow, next week, next month, or next year. His heart is seriously compromised by heart attacks, Atrial Fibrillation and CHF (Congestive Heart Failure), not to mention STOPPING several times now. He is on some strong ass drugs to try to prevent A-Fib and blood clots. Pile that all on top of his Diabetes and dialysis and my husband is indeed sicker than he was on February 29th. He will not be returning to work and legally he is not allowed to drive for at least 6 months after coding. Our lives are changed.

But Mark is STILL ALIVE, for crying out loud! His mother was convinced this was it. I was almost convinced.

I feel so many things that I don't know if I can adequately articulate right now. Some people have felt anger over what is happening to Mark. I refuse to waste this time I have with him on anger. I'm also trying not to be sad over what almost happened, or even that it could still happen. I don't need to feel sad until it DOES happen. I feel blessed and awed and happy that I got to bring him home. Home to his kids. This was honestly the best possible outcome, and we got it.

What I need to work through right now is stress and fear. Stress over the changes (financial, logistical, medical). And fear of the "what ifs". What if he codes here at home? What if he dies in his sleep right next to me? What if something scary happens in front of the children? Can I ever leave him alone? And what if I lose him forever?

Another thing I feel is immense GRATITUDE. Yes, grateful that Mark came through this. But the outpouring of love, support and help has overwhelmed me! "Thank you" doesn't feel like enough. I keep saying it, and it's just not doing it for me.

All of our parents came. Mark's sister and nieces came. My aunt was at the hospital every day. My uncle and a couple of cousins came. Mark's co-workers at Home Depot have been so generous. And my best girlfriends, who spent more than one night at the hospital with me, who made sure my kids were well taken care of and who cried with me. To have people in your life who are YOUR advocates while you're busy advocating for your spouse, is a tremendous gift.

Lest I forget, all the comments and tweets from those of you who read me have truly helped to bouy me and make me smile in the midst of some scary shit. Sorry, but swearing about this feels kinda good.

See? This stuff I'm saying sounds totally inadequate. Maybe I can do better expressing my feelings as time goes on.

A Sick Heart

I am sitting here to blog when I should be going to bed. We "spring forward" in a few hours, losing an hour of sleep, which is really the last thing I need right now.

But this is the first quiet, alone time I've had in days. I need to write about what's happening. It helps me process. I honestly don't think I can go to bed without doing it.

The basic update is this: Mark was moved out of the ICU to the regular cardiac care floor on Saturday around 6:00 PM. Since having his second breathing tube removed late on Wednesday he has made improvements. His heart rate and blood pressure have remained stable. With lots of medication. He is on an antiarrhythmic called Amiodarone to help control Atrial Fibrillation. He has also been put on a very strong blood thinner, Warfarin (Coumadin), to help control blood clots that can result from A-Fib. Mark's heart is enlarged (Cardiomyopathy). Further, he is in congestive heart failure.

All those complicated terms and meds boil down to one simply fact: Mark's heart is super sick.

If I list EVERYTHING wrong with my husband, it's overwhelming:

Type 1 Diabetes (insulin dependent)
End Stage Renal Disease (kidney failure)
Peripheral Vascular Disease (veins)
Neuropathy (loss of feeling in his lower extremities)
Coronary Artery Disease (has had 2 heart attacks & double bypass)
Arrhythmia
Cardiomyopathy
Congestive Heart Failure
and prone to staph infection

Everything stems from Diabetes. He has been dealing with it since age 9. Obviously what is most troubling at this juncture are all his heart problems. I have talked at length about the night of Mark's bypass surgery and that his heart stopped 3 times. In this past week, Mark's heart has stopped twice more.

Before last Thursday, We didn't know that things were so serious. I, at least, naively thought Mark's heart would be good to go for many years after having bypass. It's been only a year and a half.

In this past week I have had to come to terms with the fact that my husband's life may come to an end at any moment.

I have also talked before about how I have known for a long time that I would outlive Mark. But until now, it was all "what if" and theory and probability. Now it's reality.

When Mark was extubated on Wednesday, I had to inform him that there's nothing more than medication that can be done for him. There are no surgeries. No cures. His diseases have taken their toll.

His first question was, "How long?" I couldn't give him an answer, and neither can the doctors.

I had to tell him I wasn't even sure he'd be leaving the hospital.

He said, "I have to go home."

Mark and I had to host a family meeting on Thursday morning to go over what our options are with hospital staff. We discussed end of life issues such as when to stop trying and hospice.

Everyone has their opinions on these issues. I had to look my husband in the face and ask him what HE wants.

He doesn't want to die. He wants to keep fighting for us, his loved ones, for his children. He's sad.

We filled out a Living Will and Durable Power of Attorney papers. We spent some time talking about songs that have had meaning in his life, about how he'd like a service for him to be.

These are not conversations any wife wants to have with her husband.

Right now, Mark is rallying, and it's wonderful. I have spent as much time with him as I could physically handle since he got off the breathing tube. I am so grateful for it. Everyone who loves him is. Nearly everyone who loves him has come to see him, from both near and far. And there are still more.

It is overwhelming, dizzying, amazing, sad and inspiring all at the same time. I am so proud of my husband. So proud of his shear determination to squeeze every drop out of life that he can. He understands what is happening, but he's not going without a fight. And none of us would expect anything less from Mark.

For myself....oh God. I have sobbed til it hurt and I have laughed til it hurt. I am bouyed by all the mass amounts of love, care, concern, well-wishes, help, prayers, hope, laughter and togetherness. I know I am not alone and that is awesome.

My kids are doing OK so far, although they are missing me. Especially AJ. He doesn't understand why I'm spending so much time at the hospital. I've told him that he and Cami need me, but so does Daddy, and I'm trying to divide my time. I have basically been home some every other day. ALL of there grandparents are here right now, their aunt too, and their cousins just flew in tonight. I think they shouldn't be thinking about me at all, right? Well, it's kind of nice to know that even with all that attention and fun, they might still miss their mom.

Mark and I are being bombarded with lots of information and opinions. But I think we are doing a damn good job of filtering it all and remaining focused on each other and our kids. We're gonna love each other through this, see where it takes us and have no regrets.

It's late and I should go to bed. I just have so much more I could say! But there is time for that. I know I will say all I need to say as I need to say it. For now, I am taking each day as it comes, loving and being loved.

A Critical Listicle

Yes, Mark is still in the hospital and I am still doing a Listicle.

It won't be about this week's topic, however.

1. Thursday - Saturday were really hard. I left Mark at the hospital Thursday afternoon thinking he'd only be in for a night of observation.

2. Before Friday could dawn, I got 2 of the worst phone calls a wife can get. My husband's heart had gone into A-Fib, stopped and restarted, shocked again to try to stop the A-Fib, he was intubated and moved to critical care.

3. I rushed to the hospital because he was scary unstable. Really scary unstable. Like, the worst could happen, unstable.

4. Nothing happened on Friday. I left my children with friends and went home with the most nervous stomach I've ever had in my life. Saturday morning I wrote THIS.

5. I was so tired and out of it on Saturday. Often when things like this happen I move in slow motion. It's hard for me to make decisions and I just don't really care about anything besides what's going on with Mark.

6. But Sunday was better. I slept better and got good news when I called his nurse. The next thing I knew, she was calling me back to tell me Mark was fully awake and asking for me. I cannot tell you how amazing hearing that feels!

7. Seeing him awake and talking to him makes the hugest world of difference. I feel so helpless when he's not able to communicate how he feels and what he thinks. Also, his inherent charisma just makes everything better. Even in these dire situations. He was cracking me up with how pissed he was about being shocked!

8. I want to revel in the relief of Sunday's developments, but I'm still guarded. He's not out of the woods yet. There's still plenty to worry about. I have no idea what his prognosis is, how life might change going forward or what we're facing. Those answers will come in the days ahead.

9. YOU GUYS! You guys, whether in real life or here on my computer, have been amazing! You have said the sweetest things, You have HELD me. Honestly, I think blogging came into my life at exactly the right time, when I would need the supportive connections I've made most. The way everyone has rallied around me...it's overwhelming. In a good way!

10. This road we're on, this life of ours with it's sad and scary times, is unpredictable. I never know what will be around the next corner. And it scares the hell out of me! But what I do know is that I am not alone. I know I am loved and cared for and thought of. It really does make a difference. Please, hold your loved ones tight and tell them you love them. Because life can change on a dime. Do it so you have no regrets. Do it for me and Mark.

My husband is in critical care.

I'm so sorry for not having a TGIF post this weekend, but there's just no way I can write about happy things right now.

Well, except to say I'm happy my husband is alive.

Thursday morning while at dialysis he experienced a rapid heart rate. His nurse there told him she thought he needed to get checked out. When he came home we called his cardiologist's office and a nurse there said it sounded like atrial fibbrillation and yeah, he should get checked out.

So we made arrangements for the kids and headed to the ER early Thursday afternoon. Mark didn't display any symptoms the entire time in the ER. Labs showed elevated cardiac enzymes, however, so they opted to hold him overnight for obsveration.

Very glad for that because sometime between 2:00 and 3:00 AM his heart rate spiked again and his blood pressure bottomed out. It got so bad that his heart actually stopped.

They restarted it and transferred him to cardiac critical care. Mark has been intubated and sedated since then, on pressors to keep his blood pressure up and another medication for the rapid heart rate. It's Saturday morning as I'm writing this.

The plan for today is to TRY and lesson the pressor meds and give him a long, slow dialysis treatment. I'm not sure about the breathing tube or when they might try to extubate him.

Mark has congestive heart failure. His heart pump is weak and we think it's trying to compensate by going into A-Fib. I see it like his heart is confused as to what it's supposed to be doing.

There's a delicate balance the doctors need to find between dialysis and his blood pressure. Dialysis will help his heart by removing fluid and potassium, yet it can also make his blood pressure drop. This is why they will do a slow and gentle treatment.

I was up from 3:00 AM Friday morning, arriving at the hospital before 5:00. They actually told me I should come in because of how unstable he was at the time. That phone call is THE SCARIEST call you can get. It's horrific to be at home and get a call from the hospital that your husband might be dying. And this wasn't even the first time that's happened to me.

Last night I slept on the couch with the TV on low, with my glasses still on and my cell phone right next to my head. I'm a bit of a wreck. Everything is making me cry.

What I'm trying really hard to do right now is stop my brain from thinking about the thousands of variables and concerns about what this all means. Whether he recovers from this or not...if he does, will he be sicker than he already was? And if the worst happens.....

But like I said, trying so hard not to think about all of that, to focus on TODAY, each minute if I have to.

One of the hardest things about going through medical crisis is that life continues to go on around you. The kids still have school, the house still needs to be cleaned up, laundry still needs to be done and bills have to get paid. I have to worry about all of that.

Thankfully I have an excellent support system. I have fabulous friends and sweet family. Gosh, that is half of what makes me emotional.

Well, my kids are home, so I'll sign off now.

My Husband is Enough

Source: littlelifepreservers.com via Just on Pinterest

My dearest Mark,

I'm not sure you're really hearing me when we're talking so I'm going to put this out to the world as a way of showing you how I feel and what I truly think.

I need you to know that you are enough.

You are enough man, enough husband and enough father.

You are the love of my life. Your children light up when you spend time with them.

Your health problems have nothing to do with how we feel about you.

You are not a burden and you do not cause us pain.

The health problems are hard and cause worry and concern and even fear. But they are what they are. They are not WHO you are; they do not define you.

I know you're becoming afraid, wondering how much more your body can take. I know how afraid you are that you'll leave us too soon.

I'm afraid of that too.  We do deal with a lot of crap. It does get stressful. Scary things happen. There are challenges to overcome. Life just plain sucks sometimes.

But you taught me - YOU TAUGHT ME - years ago that we cannot live in fear. YOU TAUGHT ME about what it is to fight for the life you want. YOU TAUGHT ME how to live in the moment.

Being with you has taught me how to love unconditionally. You have taught me compassion and faith. You have taught me how to laugh in the face of hardship. You, my sweet husband, have taught me to see each and every one of life's blessings and to focus on them when struggles come. Because of your strong influence in my life, I know that everything will be OK. Somehow, someway, it'll be OK.

When I think back to where we began, and look around at where we are today, all I see are the good things.  I see our relationship of almost 18 years, our beautiful children and this little house we bought and I am in awe.  I feel so full of love.

I am proud of us. I am proud of our life together. I am proud of you.

This life - yours, mine, ours - will never be picture perfect. It is what it is, hon. At the end of the day, the crap doesn't matter. What matters is who we are, how we love, our strength and perseverance.

Mark, I can't stand to watch you worrying so much about the future. Please, like Sammy says, stay right here, right now. Breathe in the moments and live your life with the intention of wringing out every single last drop that you can.

And please know, beyond a shadow of a doubt, that you are enough. No, you are more than enough.

I love you,
Jen

PS: Like The Band says, you have The Eye of the Motherfucking Tiger, and don't you forget it!

The Stress of Poor Health

For various different reasons Mark and I have been stressed over things regarding his health lately.

His broken chest wire, the infection it caused, having the wire removed only to find out the infection was bad.  Spending 3 days in the hospital right before Christmas to treat the infection and help the chest wound heal properly.  Being on a wound VAC requiring M-W-F visits to a clinic for dressing changes and carrying this heavy purse-like thing around and trying to sleep with it....

All of this caused much tension and anxiety all the way up until Christmas Eve.  Thankfully, Christmas Day went well.  It was a true Holiday.  I was so thankful that Mark woke up that morning a little more rested and in good spirits because I had been worried all week that I would have to put on a happy face and make Christmas good for the kids on my own.

I life truly is "one day at a time".

In the week after Christmas, Thursday I think, while shopping at Target with gift cards, Mark got a phone call from his dialysis center telling him he no longer qualifies for the state-funded Kidney Disease Program which was helping us with his medical insurance costs.  This caused our stomachs to turn and blew the wind right out of our sails.  We let the kids spend their gift cards and just left.

The KDP was reimbursing us for Mark's monthly Medicare premiums and payed his monthly secondary insurance premiums, $96 and $284, respectively.  That's no small amount of money.  We hoped through until yesterday someone made a simple mistake somewhere.  Alas, no.  We spent time on the phone with the financial services manager for the dialysis center yesterday morning brainstorming our options.

All this, and Mark paid the ER another visit on New Year's Eve.  There wasn't anything wrong with HIM, thankfully.  It was the dang wound VAC.  It was malfunctioning and we couldn't reach anyone on the phone who knew what to do about it.  Turned out the ER didn't know what to do either, and didn't even redress his wound properly.  It was a huge waste of time and Mark and I didn't even get to give each other a kiss at midnight.

I couldn't believe I cried both Christmas Eve and New Year's Eve.  What the hell?

Mark's health problems have been taking more of a toll on him emotionally since his bypass in September 2010.  That experience brought his mortality right up in his face big time, and really rattled him.  Add to that his male pride....that he's not the same as other men....yet still a MAN in every other sense.... He is simply FEELING it all more intensely now.  He is way more easily stressed and worried and even cries more.  Not being used to this side of him, I keep making these mistakes in how to deal with it that cause us to argue, which is the last thing we need.

I am having to hold him up a lot, to reassure him that everything will be OK, everything will work out.  We've had this major role reversal in our marriage where this is concerned.  I used to be the one who freaked out easily and he would be my rock.  Now he acts as if the sky is falling during times when I used to.  While I too feel the stress and worry (and anxiety), I am now able to take a deep breath and tell myself it'll be alright.

I don't know how this happened, but I suppose it's the way it was meant to go.  That I would develop my strength to the point where I had enough for the both of us just when Mark needed me to.  He is kind of a mess right now.  We can't both be messes at the same time.  We have to maintain some semblance of normal life for our kids.  And I just can't let my husband fall completely apart.

Thank you, Shell, for giving me permission to pour my heart out once a week if I need to,
with the knowledge that someone will hear it.