He is Fragile

My husband needs my help to get ready for a shower. He is currently sporting three different dressings that need to be kept dry.

I don't mind helping him, but I kind of hate seeing him without clothes on these days.

He's so thin.

One Word for 2015

This will be the third year I've had a single word to guide me.

I started to say "follow me", but that's not how it works. Not for me, at least.

My word actually leads me. I think I said last year that it's as if my word is floating somewhere out in front of me and I chase it.

I have found choosing a word for the year to be so much more powerful than any resolution I could make.

My One Word for 2015 is Resolve.

Perfect. (source)

It's Not ALL About Me

A couple of weeks ago, right before my husband's recent hospital stay, we had an appointment with his vascular surgeon. He scheduled another procedure for Mark, an angiogram of his right leg, which he never actually ended up having....

But that's not really what I want to talk about.

After seeing the doctor and talking with him about the nasty sore Mark has on his right heel, and what it might mean if we can't get it to heal, that this is another thing, something changed for me.

It has been coming over time, with each new ordeal that crops up in Mark's chronic illness journey....

That he and I are on two SEPARATE paths. Two different journeys.

The View From Here: My Window

The View this week is from someone whom I have, admittedly, been getting to know kind of slowly.

The more I get to know her, the greater I think she is. Christine Carter of The Mom Cafe
is sweet, yes, but also someone you can easily respect.

__________

My Window…

I like to think my view of this world has been through a window.  

My window.

Why Do You Fight?

“You don’t have to”, I was told. “This doesn't have to be your struggle.”

“No,“ I instantly responded, “apathy, complacency and indifference are unacceptable.

I Am Fierce

Whatever fierceness I have in me comes from Love.

I am loved fiercely, and I love fiercely in return.

I've written ad nauseam about my PTSD, anger, fears and worries as regards Mark's last major health crisis (or his health in general). Those are the things I'm not proud of, that I struggle with and have to work through.

But there was something else. Something I had forgotten about, or failed to see or was overshadowed by the fear, until an email popped into my inbox.

It asked if there was a time when I was fierce. And I realized that, yeah, there absolutely was.

The most fierce I've ever had to be was when doctors told me I should prepare for the possibility that my husband was dying.

I was fierce when I had to face my children and answer their questions about their dad.

I was fierce while juggling family members.

I was fierce when pushing for information from hospital staff.

I was fierce when I absolutely had to focus on my own needs.

I had to muster up fierceness when I was forced to tell my husband the doctors thought he might be dying.

Mark and I were both fierce when signing living will/power of attorney papers.

I was fierce by insisting my husband should go home.

I was fierce when letting the tears flow.

FACING MY WORST FEAR made me fierce!

In the moments, I just did these things. At the time, I could not see the fierceness in my actions.

Even though I nearly burst into tears after every few sentences writing this, I see now how I was fierce. I see now that I still am.

I am sharing this with you as part of The Traveling Blue Wig Project. It is to spread the word about the Clever Girls Collective's Fierce Fund, which is seeking to donate $20,000 in support of nonprofit initiatives that celebrate, encourage, and elevate women and girls.

But they need YOUR help! There are three causes the Clever Girls want your help in choosing from: CoachArt, Dress for Success and Girls Who Code. You have until next Monday, October 21, 2013 to get your vote in.

Do you have a story of a time you were Fierce?

Tell me about it, and then go vote to support women and girls.

Visit the #FierceFund to learn more about this girl-power project!

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.....

Kid Gloves

I feel lately like when I say something about the trauma I've been through people feel they need to console me in some way.

I don't know if they mean to make me think they think I'm weak, but that's often what I feel.

Like I have FRAGILE: Handle With Care stamped across my forehead.

I suppose I am kind of fragile.

But dangit, It makes me feel like I shouldn't say anything at all. It makes me feel like everyone is waiting for me to crack.

To become the puddle I've so long been fearing I'd turn into.

The puddle that I'm actually learning to not be afraid of.

But now it feels like everyone else is afraid of it.

Oh my god, Jen's just gotta lose it eventually!

We should walk on eggshells around her; handle her with kid gloves because she might crack.

I feel like my friends have stopped sharing their lives with me, even holding me at arm's length. Like because I go through some hard things that I couldn't possibly still care about their lives.

I don't know if that's the truth. I just know that's how it feels to me.

It feels lonely.

Sometimes when I'm talking to someone they'll complain about some aspect of their life and then stop themselves and say something like, "Oh but that's not anything like what you deal with....".

So? My troubles are mine and your troubles are yours and it's all subjective anyway.

I don't corner the market on pain. And I would never presume to.

Shouldn't we all just be there for each other?

Is it because I've finally sought out counseling? But that is what will help me be stronger.

And everyone says I should, that I need it and it's good for me.

Yet.....

So I'm confused. I am confused about what people are trying to do where I'm concerned.

Is it support? But it feels more like......not being given any credit.

I don't know. Like I said, it's confusing.

It's all making me feel sort of dumb.

And I don't know what to do with that.


Linked with Pour Your Heart Out.

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.

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....

Soaking Up the Good

The working title of this post was "Trying to Soak Up the Good".

Because when I first thought to write it a few weeks ago, I was still merely trying.

I'm glad I was slow to get back to it, because after awhile, I realized that I AM soaking it up.

I really am.

This is huge.

I'm not feeling guarded or cynical these days.

I can't say I never think about the tough stuff anymore. My worries will always be there. My concern for my husband's health continues to nag at me.

But I am fully living in the now....the calm of Mark being stable, summer, my kids, gardening, walking, taking pictures, friends and family....not even thinking too much about September.

Right here. Right now.

I feel like my inner thoughts and desires were heard and answered, allowing me to slowly find peace.

Peace in the face of some scary shit. Peace with what was, is and will be.

It's been a process to get to this place. But being here feels great! I feel stronger and more confident.

I feared I could get stuck in that cynical and angry phase. Instead I feel more open. I'm astonished at what the difficulties in my life have shown me*.

No matter what life throws at me, at us, I know at the core of my being that everything will work out for the best. I know this because I have faith in the bigger picture.

"This too shall pass."

"What doesn't kill you makes you stronger."

"Every dark cloud has a silver lining."

These are not merely trite pearls of wisdom. There is Truth in them.

Things can suck. Things can suck hard. Things can feel like the sky is falling and you want to hide under a rock.

Shit happens, and it will happen some more.

But today, things are good. I'm content and satisfied, feeling positive and grateful.

It sure feels good.

*Now let's hope I didn't just jinx myself!

I poured my heart out and am hanging at yeah write.

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

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.