There are many doctors (and their nurses or assistants) involved in my husband's health care.
An entire team including a nephrologist, technician, RN and dietician at the dialysis clinic.
A palliative care nurse.
Home health nurses who change dressings and check vitals a few times a week.
A paid caregiver provided by the state who helps with some housework, appointments and other errands, and helps Mark get a good shower every week.
Then there's me.
Showing posts with label worry. Show all posts
Showing posts with label worry. Show all posts
March 14, 2016
September 22, 2014
10 Things I Think About When My Husband is in the Hospital
My husband has been in the hospital for a week now. He has had two procedures, one leaving an 18 inch incision running down his chest, and several cocktails of antibiotics.
He hopes each day might be his last (in the hospital, I mean), but then something else crops up.
Today is a regular dialysis day so they took him for the treatment....but his Quinton catheter is running slow now. Are they going to have to put a new one in? That's another procedure. Sigh.
I feel so badly for Mark. He isn't getting good sleep and he's hardly eating. A plastic surgeon was supposed to come see him about that chest incision, but just didn't over the weekend.
So yeah, hospital stays pretty much suck. And every time, there are many things running through my mind.
September 15, 2014
Admitted to the Hospital
The thing is, he and that are a huge reason why I blog. It is my desire to blog my way through the craziness that is Mark's chronic illnesses. For me/us and for others. It's our story, our journey.
So I will keep writing.
September 10, 2014
My Anxiety
For me, anxiety manifests in mainly two ways:
- All the terrible, awful, scary things that can happen flash in my head.
- I become Chicken Little crying, "The sky is falling, the sky is falling!"
December 3, 2013
A Tough Question....and Doctor Who
One night last week my daughter asked the question Mark and I have been waiting on pins and needles for one of the kids to ask.
And balled my eyes out.
When Camryn asked the question, the four of us were getting settled on the couch to watch Agents of SHEILD, just like we've been doing every Tuesday night this fall. Well, except the previous Tuesday, when Mark was in the hospital being treated for his heart attack.
AJ decided we shouldn't watch it without him.
Fast forward a week and here is this question hanging in the air.
Mark and I were sitting at either end of the couch, with the kids in the middle. Cami was near me, AJ near Mark. The show was paused and the two of us glanced at each other, then I turned to our daughter.
"What exactly do you mean, 'what will we do'?". I wanted to gauge where she was coming from.
The last thing we would say is "don't be silly, that's not gonna happen!", because it might. We're not going to lie to our children. We don't want to scare them needlessly either. We have to tread very carefully here.
At first Cami mentioned money and paying our bills and getting groceries and stuff like that. Mark asked AJ if he ever thinks about him dying. AJ shrugged and said no. Then Mark made a little joke about being reduced to administrative tasks like running errands.
Those logistical things are sometimes all we have any control over, so I could understand why Cami was thinking about them.
But I told her that is the stuff I would take care of, that I would figure out for us. I told her all she should be thinking about is that she would be sad and miss Daddy.
That's when AJ burst into tears, prompting the rest of us to get choked up too. When AJ cries like that, over something SAD, it just kills us.
Mark wrapped his arm around him and then AJ said, "I don't want you to die!"
And little pieces of our hearts broke.
We held it together, though. Mark said he doesn't want to leave us and would try not to let that happen, but that if it does happen, he would still be with us in spirit. Always.
I agreed, telling the kids that I was one hundred percent certain their dad would always be watching over them, just because I know he doesn't want to miss anything. I also told them that we would stick close together and be there for each other, and I would do my very best to help them be OK.
I asked if there was anything more they wanted to talk about right then (although I don't think AJ ever wanted to talk about it), they said no, we had some hugs, and resumed our show. We proceeded to have a typical bedtime.
Mark and I didn't talk about it any further that night either. Maybe because I went to watch some Doctor Who in our bedroom after the kids were in bed because I'm trying to get caught up.
Little did I know the next episode I needed to watch was the most emotional one, like, EVER.
I had purposely made myself NOT cry while having this heavy discussion with the kids. So when The Doctor had to say goodbye to Amy and Rory -- and I was alone in my room -- it all came out.
I knew I was crying over more than just a TV show. That's kind of the beauty of shows and movies that tug at you emotionally. They give you permission to FEEL. To let it out, and hopefully, let it go.
Then, just like the conversation with the kids, I quickly started the next episode of Doctor Who, because I know it goes on without Amy and Rory and I needed to see how.
What will we do if Daddy dies?Then I watched "The Angels Take Manhattan" episode of Doctor Who.
And balled my eyes out.
When Camryn asked the question, the four of us were getting settled on the couch to watch Agents of SHEILD, just like we've been doing every Tuesday night this fall. Well, except the previous Tuesday, when Mark was in the hospital being treated for his heart attack.
AJ decided we shouldn't watch it without him.
Fast forward a week and here is this question hanging in the air.
Mark and I were sitting at either end of the couch, with the kids in the middle. Cami was near me, AJ near Mark. The show was paused and the two of us glanced at each other, then I turned to our daughter.
"What exactly do you mean, 'what will we do'?". I wanted to gauge where she was coming from.
The last thing we would say is "don't be silly, that's not gonna happen!", because it might. We're not going to lie to our children. We don't want to scare them needlessly either. We have to tread very carefully here.
At first Cami mentioned money and paying our bills and getting groceries and stuff like that. Mark asked AJ if he ever thinks about him dying. AJ shrugged and said no. Then Mark made a little joke about being reduced to administrative tasks like running errands.
Those logistical things are sometimes all we have any control over, so I could understand why Cami was thinking about them.
But I told her that is the stuff I would take care of, that I would figure out for us. I told her all she should be thinking about is that she would be sad and miss Daddy.
That's when AJ burst into tears, prompting the rest of us to get choked up too. When AJ cries like that, over something SAD, it just kills us.
Mark wrapped his arm around him and then AJ said, "I don't want you to die!"
And little pieces of our hearts broke.
We held it together, though. Mark said he doesn't want to leave us and would try not to let that happen, but that if it does happen, he would still be with us in spirit. Always.
I agreed, telling the kids that I was one hundred percent certain their dad would always be watching over them, just because I know he doesn't want to miss anything. I also told them that we would stick close together and be there for each other, and I would do my very best to help them be OK.
I asked if there was anything more they wanted to talk about right then (although I don't think AJ ever wanted to talk about it), they said no, we had some hugs, and resumed our show. We proceeded to have a typical bedtime.
Mark and I didn't talk about it any further that night either. Maybe because I went to watch some Doctor Who in our bedroom after the kids were in bed because I'm trying to get caught up.
Little did I know the next episode I needed to watch was the most emotional one, like, EVER.
I had purposely made myself NOT cry while having this heavy discussion with the kids. So when The Doctor had to say goodbye to Amy and Rory -- and I was alone in my room -- it all came out.
I knew I was crying over more than just a TV show. That's kind of the beauty of shows and movies that tug at you emotionally. They give you permission to FEEL. To let it out, and hopefully, let it go.
Then, just like the conversation with the kids, I quickly started the next episode of Doctor Who, because I know it goes on without Amy and Rory and I needed to see how.
September 24, 2013
Can I Let My Guard Down?
It has been since March of 2012 that my husband has had a major medical crisis. He's had just a couple of one-night hospital stays for minor issues.
It has taken me 18 months to be able to even start entertaining these thoughts.
I have a slightly superstitious side. A small part of me that thinks maybe one can jinx themselves or something. You know, those moments when you say, "Oops, spoke too soon."
So I haven't wanted to give voice to it.
Can I stop thinking Mark is going to die soon?
The roller coaster ride that is loving someone with chronic health problems makes your head spin. Mine was given a whirl when Mark's heart stopped after bypass surgery. Then it was like a never ending merry-go-ride when he had the arrhythmia, didn't seem like he was going to get better but then did.
I guess I don't think about what, up until that point, was the worst night of my life much anymore. The anniversary of Mark's double bypass came and went the other day but I didn't notice. Three years since the first time I thought I might lose my husband.
I guess that's what happens when something even bigger and scarier, something you had no idea would or could come, rears its ugly head.
In comparison with the aftermath of bypass, Mark's arrhythmia was indeed a bigger, meaner beast. The experience of his heart stopping, being shocked back, several days if sedation with a breathing tube and pneumonia were very traumatic for us both, in different ways.
When Mark came home from that hospital stay, I was prepared for the idea that he would be permanently much weaker. I didn't think he'd work again and wasn't sure if he'd even drive. I still think his personal determination made those things happen. Mark never thought he couldn't, so he did.
Each of these crises have left his legs weaker for some reason that I don't understand. He now always uses a cane to help him walk, gets tired from walking easily and often chooses to use those shopping cart scooters in stores.
His blood sugars still fight with the insulin his pump delivers and he just finished a nearly year-long battle with a few foot sores. He's still on dialysis.
All these things remain, but for crying out loud, MARK IS OK. He might even be better than OK. Now that the foot sores are healed, he is trying to use scooter carts less and has even begun doing some exercises each day.
And then there's the maybe could happen possibility of a kidney transplant.
A glimmer of HOPE.
I don't even know what to do with it. I mean, can anyone out there understand even a little bit how bewildering dealing with all this push, pull, up, down and sideways shit is?
OK so, your husband had bypass and that lasts a long time so he should be pretty good for awhile. Oh wait! Sorry, forgot to warn you about the possibility of developing Ventricular Tachycardia and that it might kill him. Oh shoot, it IS killing him. Better prepare yourself. But wait, he got better! Now let's see if he can have a new kidney!
Head. Spinning.
So I ask, when you've understandably built up a wall to hide from the scariest thing imaginable behind, and then it doesn't happen, is it safe to let your guard down and start peeking out?
That's probably a rhetorical question.
May 7, 2013
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.
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.
January 9, 2013
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!
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:
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.
I shall leave you with the following quote (which I have no idea if Les knows is one of my favorites):
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!
__________
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.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!”
That is not a life well lived.
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.
__________
I shall leave you with the following quote (which I have no idea if Les knows is one of my favorites):
December 19, 2012
Tainted Christmas
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| source |
Is it just me or are others feeling like the joy is being sapped out of Christmas this year?
It feels to me like there are several dark clouds hanging over what is supposed to be the most magical time of year.
So much bad news lately.....a devastating hurricane, a supposed financial crisis and the most horrific of tragedies, a mass murdering of children.
There are also my personal struggles. My husband's struggles.
And it might all be for naught because the freaking end of the world is looming!
In all seriousness, these things are hanging over my head and dampening my spirits.
But I have children and so I forge ahead, trying to make Christmas as special for them as I can.
I may or may not also be trying to drag my husband kicking and screaming into some happy, desperately trying to distract him from what hangs over his head.
It's exhausting. I'm tired.
I love Christmas, for all the little, and big, reasons for the season. I love presents, lights, treats, carols, ornaments, cards, family, the Baby Jesus.....
But.....I hate to admit it....I didn't want to admit it.....this year is kind of hard.
If I can help it, my kids will not feel any of this. They will have a Christmas just like any other. Oh I am so grateful for them!
How do I shed even just some of this weight? How do I turn off my heart to the grief and worry all around?
Maybe this is just how I feel today. Perhaps as each day draws closer to Christmas things will start to feel better.....
December 12, 2012
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.
September 20, 2012
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.
__________
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.
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.
__________
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.
September 19, 2012
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....
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....
April 10, 2012
What more will there be?
There is nothing fun about chronic illness.
You adapt and manage, make the best of the situation, live life the best you can under the circumstances.
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!"
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?
 |
| 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 |
March 28, 2012
Questions
My head is spinning and I just gotta type some stuff out to try to help clear....things....up...?
I don't know if that's possible.
OK. Mark's nephrologist (kidney/dialysis doctor) was really bothered while he was in the hospital that Mark's cardiologists may not have been doing their due diligence for him. He was very concerned that they seemed to want to just send Mark home to die, when they hadn't called any arrhythmia specialists in to see him.
Since being discharged from the hospital Mark's nephrologist has found a specialist who can see him. Apparently this doctor has gone over Mark's charts and thinks he did NOT suffer Atrial Fibrillation.
What?? WTF happened, then? SOMETHING happened to Mark's heart. SOMETHING caused it to stop MORE THAN ONCE, and SOMETHING made everyone think he might not survive.
But we cannot get answers to these questions until we see this new doctor on April 9. Twelve more days.
I need to lay out the series of events.
Since we've been home Mark has been stable. He's still struggling to get all the fluid off that the hospital packed on him. We have been and are in this weird limbo place where we're trying to go on with life, with major changes, while constantly worrying about Mark possibly dying.
Again, today we hear that the specialist Mark will be going to see doesn't think the problem was A-Fib. And this is supposedly good news, because I guess non-A-Fib arrhythmia can maybe be helped with a pacemaker...?
I don't understand why we needed to be teased with this little bit of info when the doctor hasn't actually SEEN Mark, only his charts, and we don't get to meet him for twelve more days.
How the HELL do we not sit around wondering our brains out about what is really going on with Mark's heart?
Nope. I'm no clearer on anything.
And probably just confused the hell out of anyone reading this. Sorry about that. Welcome to my world.
Tomorrow we're going to see Mark's regular cardiologist and I expect will be pressing him pretty hard for some explanations. Mark is not happy with him at this point. All I know is I need answers. I need to know if my husband is going to live or die.
I don't know if that's possible.
OK. Mark's nephrologist (kidney/dialysis doctor) was really bothered while he was in the hospital that Mark's cardiologists may not have been doing their due diligence for him. He was very concerned that they seemed to want to just send Mark home to die, when they hadn't called any arrhythmia specialists in to see him.
Since being discharged from the hospital Mark's nephrologist has found a specialist who can see him. Apparently this doctor has gone over Mark's charts and thinks he did NOT suffer Atrial Fibrillation.
What?? WTF happened, then? SOMETHING happened to Mark's heart. SOMETHING caused it to stop MORE THAN ONCE, and SOMETHING made everyone think he might not survive.
But we cannot get answers to these questions until we see this new doctor on April 9. Twelve more days.
I need to lay out the series of events.
- 2/28 - Had tooth fragments pulled
- 2/29 - Felt really tired and crappy
- 3/1 - Went to dialysis in the morning where his heart rate first spiked. Went to ER to get this checked out. Heart rate and blood pressure were normal, but was admitted for observation.
- 3/2 - Somewhere around 2:00 - 3:00 AM his blood sugar is real low, then his heart rate spikes, blood pressure bottoms out and heart stops. Is shocked, intubated and moved to ICU.
- 3/2 - 3/4 - Remains intubated and sedated and on IV meds to support his blood pressure and keep his heart rate from spiking.
- 3/4 - Breathing tube comes out and wakes up. Sore throat (from tube) and coughing a lot. Heart rate is till erratic, but not dangerously high.
- 3/5 - Coughing gets worse until around 9:00 PM when his stats go wonky and his heart stops again. Use meds to get it going but has to be re-intubated.
- 3/5 - 3/7 Find out he has staph in is lungs (pneumonia). Remains intubated and sedated and on IV meds to support his blood pressure and keep his heart rate under control. Spend this time thinking Mark may not survive this.
- Night of 3/7 - Let him wake up and be extubated again. I explain the situation to him and he too thinks this might be it.
- 3/8 - Have a huge family meeting about possibly needed hospice care. No cardiologist in attendance. Nephrologist comes in and is appalled that everyone wants to send Mark home to die. We have his cardiologist paged. When he comes he says there's nothing they can do to fix Mark's heart. He says he consulted with 2 arrhythmia specialists who concurred.
- 3/9 - We think Mark is rallying, but there's still nothing they can do to fix the problem so he's probably going to get worse and worse. Nephrologist is still insistent that he needs to see a specialist.
- 3/10 - Mark is doing well enough to leave ICU late that day.
- 3/11-3/13 - Stable and ready to go home but it takes a long time to figure out what the plan is. Get home afternoon of 3/13.
Since we've been home Mark has been stable. He's still struggling to get all the fluid off that the hospital packed on him. We have been and are in this weird limbo place where we're trying to go on with life, with major changes, while constantly worrying about Mark possibly dying.
Again, today we hear that the specialist Mark will be going to see doesn't think the problem was A-Fib. And this is supposedly good news, because I guess non-A-Fib arrhythmia can maybe be helped with a pacemaker...?
I don't understand why we needed to be teased with this little bit of info when the doctor hasn't actually SEEN Mark, only his charts, and we don't get to meet him for twelve more days.
How the HELL do we not sit around wondering our brains out about what is really going on with Mark's heart?
Nope. I'm no clearer on anything.
And probably just confused the hell out of anyone reading this. Sorry about that. Welcome to my world.
Tomorrow we're going to see Mark's regular cardiologist and I expect will be pressing him pretty hard for some explanations. Mark is not happy with him at this point. All I know is I need answers. I need to know if my husband is going to live or die.
March 11, 2012
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.
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.
March 5, 2012
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.
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.
March 3, 2012
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.
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.
January 4, 2012
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.
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.
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| 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. |
June 14, 2011
Stuck in the Muck
My husband has a couple major health problems and they dominate a good portion of our lives. Every day of the world he is an insulin-dependent Diabetic and on in-center hemodialysis. These 2 things can cause a myriad of other problems, and when they do, I freak out a little.
Like I've already blogged about twice, this strep infection that has hit our family is driving me crazy. Diabetics don't have great immune systems and after being one for most of one's life, poor circulation in the legs and feet. Mark had to have a toe amputated several weeks after his heart bypass last Fall because a small sore caused the little toe bone to be infected. So grateful his heart attack made the doctors take notice of his toe, otherwise the infection could've spread into the rest of his foot or worse.
So Mark is susceptible to infection. That's kind of an understatement. He was freaking SEPTIC when he had his heart attack! Right now, he supposedly only has your "garden variety" strep and staph, nothing fancy or that should be too hard to kick.
First antibiotic was apparently not cutting it, though. He went into the ER last night after his fever spiked to 102-ish. They decided they probably needed to add another antibiotic. They gave him a dose of it there and sent him home with a prescription for the rest.
I know it hasn't been another 24 hours on the new med yet, but he's still trying to keep his temp down. I just find this all so weird! The temp comes and goes. He came home from the hospital last night feeling pretty OK. Then the temp comes back. What is going on inside his stupid body??
I'm not only freaking out about the confusing nature of it all, however. See, when everything is going along all status quo like, I'm good. I can handle and deal with the everyday crap involved with Diabetes and dialysis. But when something more is dumped on top.....not so much.
I feel like I'm Chicken Little running around thinking the sky is falling! Whenever something more happens with Mark I start thinking his death could be imminent. And I don't see this getting any easier the older he gets. Since "the night from hell", the night of the bypass surgery, I worry that we're working with borrowed time here.
I know I shouldn't think that way. But I do. I know the bypass was a good thing for his heart and should be good for him for a long time. But there are just so many things that could mess with him, so many variables. I know I shouldn't burden myself thinking of every which way he could die. I know! I'm not stupid. Just not very smart.
At times like these, when Mark is extra sick, I also wonder "why me?" Why is this the life I'm supposed to have? But then, I know those are dumb questions. I know it's all for a reason. I know it's because I am who I am and he is who he is and we were meant to love each other. It's as simple and as complicated as that.
I really wish I could ride out the muck without all this inner turmoil. I try. I think I was doing a much better job of it before....you know....that night. It's just that ever since then I'm all the more aware that my big, strong husband is in fact mortal, and I kind of hate that.
When you live in the now, and the now is crappy, what then? I'm just sayin'....
Like I've already blogged about twice, this strep infection that has hit our family is driving me crazy. Diabetics don't have great immune systems and after being one for most of one's life, poor circulation in the legs and feet. Mark had to have a toe amputated several weeks after his heart bypass last Fall because a small sore caused the little toe bone to be infected. So grateful his heart attack made the doctors take notice of his toe, otherwise the infection could've spread into the rest of his foot or worse.
So Mark is susceptible to infection. That's kind of an understatement. He was freaking SEPTIC when he had his heart attack! Right now, he supposedly only has your "garden variety" strep and staph, nothing fancy or that should be too hard to kick.
First antibiotic was apparently not cutting it, though. He went into the ER last night after his fever spiked to 102-ish. They decided they probably needed to add another antibiotic. They gave him a dose of it there and sent him home with a prescription for the rest.
I know it hasn't been another 24 hours on the new med yet, but he's still trying to keep his temp down. I just find this all so weird! The temp comes and goes. He came home from the hospital last night feeling pretty OK. Then the temp comes back. What is going on inside his stupid body??
I'm not only freaking out about the confusing nature of it all, however. See, when everything is going along all status quo like, I'm good. I can handle and deal with the everyday crap involved with Diabetes and dialysis. But when something more is dumped on top.....not so much.
I feel like I'm Chicken Little running around thinking the sky is falling! Whenever something more happens with Mark I start thinking his death could be imminent. And I don't see this getting any easier the older he gets. Since "the night from hell", the night of the bypass surgery, I worry that we're working with borrowed time here.
I know I shouldn't think that way. But I do. I know the bypass was a good thing for his heart and should be good for him for a long time. But there are just so many things that could mess with him, so many variables. I know I shouldn't burden myself thinking of every which way he could die. I know! I'm not stupid. Just not very smart.
At times like these, when Mark is extra sick, I also wonder "why me?" Why is this the life I'm supposed to have? But then, I know those are dumb questions. I know it's all for a reason. I know it's because I am who I am and he is who he is and we were meant to love each other. It's as simple and as complicated as that.
I really wish I could ride out the muck without all this inner turmoil. I try. I think I was doing a much better job of it before....you know....that night. It's just that ever since then I'm all the more aware that my big, strong husband is in fact mortal, and I kind of hate that.
When you live in the now, and the now is crappy, what then? I'm just sayin'....
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