The Evolution of a New Widow

My husband died 15 months ago and there have been many changes. Some days I feel like that's what my life is now: change.

I'm doing really well. So are my kids.

We've been through the gambit of grief emotions, of course. It's interesting to me to note, though, that I haven't experienced much anger.

Alone in the Village

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.

I Can Handle It

There's this thing I've noticed that people are wont to do when interacting with people like Mark and I as someone who is ill and his wife/caregiver.

They often water down their problems for us. People say things like:

• It's nothing like what you deal with.
• It's so small compared to your struggles.
• I don't want to add to your stress.

OK so, yeah, we have struggles, and yeah, along with chronic illness comes chronic stress. I'm not going to deny that.

But we both still want to be in real, give and take relationships with our friends and family. We want others to share their lives with us.

Getting Back Into It: A Brain Dump

So I've taken nearly two weeks off from publishing anything here.

It's been good, but my blog has been on my mind the entire time. I've been thinking non-stop about so many things I could write.

It's funny, before I started to blog 4 1/2 years ago, I didn't fret over such things. Now that I do blog, it's like I HAVE to. Blogging is like crack.

Know what else is funny, that I feel the need to write about how much I've been thinking about writing before I can get on with what I want to say.

Thinking about what to share is clogging my brain so that actually doing the sharing is hindered!

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.

When Stress Gives Way to Relief

From February through July, for six months straight, life was one unending, head-spinning roller coaster.

• Down: Mark's dialysis access clotted off and he had surgery to repair it.
• Down: We got news that we were about to lose a chunk of our monthly income.
• Up: I got to go on a cruise with my BFF to celebrate our birthdays, entirely her treat.
• Up: Mark's dad visited him and the kids while I was away.
• Down: Mark went to the ER for abdominal pain, fearing it was his appendix (it wasn't).
• Up: Mark's mom and niece came for a visit. Thought mom might be moving up here.
• Down: While MIL was here, Mark had to go to the ER twice because his new access was infected.
• Down: Mark spent five days in the hospital for a new access surgery and infection treatment.
• Down: While in hospital, doctors discovered sore on Mark's left big toe that looked pretty bad.
• Up: Celebrated my 40th birthday a couple more times.
• Down: Second access surgery yielded a weaker fistula which wasn't providing for adequate dialysis.
• Down: AJ, Mark and I all got a nasty virus.
• Up: Mark had an angiogram of his iliac artery, it was cleaned out and a stent was placed, allowing for better blood flow to his left leg.
• Down: I had to go on antibiotics for a sinus infection.
• Down: Initially seemed like the toe might get better, but it turned out to be too far gone and would need to be amputated.
• Up: We finally received some money owed to us from two years ago that helped us greatly with Mark's leave of absence.
• Up/Down: Mark had both his fistula reworked to be stronger and his toe amputated on the same day.
• Down: He couldn't walk at all for at least a full month, meaning no working and needing lots of help, including me going to dialysis with him.
• Up: Celebrated Camryn's 14th birthday.
• Down: I had to take a second round of antibiotics for the sinus infection (say it with me class, stress much?)

It's All Topsy-Turvy

Do I want to write right now?

I do and I don't.

There are all these things I'd like to say, but I feel like it's not going to make sense.

Each and every blog post should be well thought out and have a point, right?

It's just that, everything is all topsy-turvy in my life at the moment.

Feeling Defeated

Life has been kind of extra stressful around the Hall house for a few months now (since February).

I learned awhile back that I have a tendency to lump a string of events together and let them inundate me. But I have been trying to keep things in perspective, making sure to take and deal with each thing as it comes, and try to leave the last thing in the dust.

I think I've been handling Mark's two dialysis access (fistula) surgeries, a five day hospital stay, his blocked iliac artery, a nasty sore on his left big toe, more than a couple of emergency room visits and adjusting to an income loss basically OK.

Then yesterday we went to what I thought was going to be a simple check-up with Mark's vascular surgeon. I thought he just needed to do a post-procedure follow-up sort of thing....

The Whole Sordid Story

My husband was just in the hospital for five days. It was a bit of a roller coaster.

He had to have his fistula (dialysis access) reworked back in February. A vascular surgeon placed a graft and made a sort of hybrid access consisting of graft and fistula. Usually these are two different forms of dialysis access.

Although a bit odd (red flag?), it seemed to be working fine until Mark's body decided to get angry with the graft and it got infected (but wait, we didn't know this was the culprit yet). He developed typical symptoms of infection: fever, chills, muscle pain, and was started on IV antibiotics at dialysis.

Over the next several days we made two trips to the ER because the symptoms weren't going away, which one would expect after only about 24 hours on antibiotics. Mark is especially susceptible to infection (usually staph) and has even had pericarditis, an infection surrounding his heart, so we were very nervous and didn't want to take any chances.

A New Product for Stress & Anxiety Relief

I am writing this post on behalf on 1Hour Break to help them spread the word about their Indiegogo campaign launch and open up the discussion on stress and anxiety. All opinions expressed are my own.

Did you know:

• Stress is linked to the top five causes of death in the United States. 
• 95 million Americans suffer from stress-related illnesses every week.
• 1/4 of all women in the US suffer from anxiety disorders.
• Stress and anxiety sufferers often self-medicate with pills, alcohol, cigarettes and food.

I have a lot of stress in my life and I suffer from anxiety because of it. I talk about it here all the time.

My doctor prescribes a low dose medication and it works to smooth out the rough edges. It helps me not be too wound up or easily agitated, and helps me to not go from zero to panicked when something stressful comes up.

I still fully feel all of my emotions. I still cry easily. I am not "switched off" like some anti-anxiety medications or anti-depressants can make you feel.

I like that my medication hasn't turned me into a robot, but I don't like sometimes still feeling the racing heart and churning stomach when something stressful hits me. I don't like losing sleep or not being able to catch my breath.

I know that those things mean my body is having a reaction to a stressful situation, usually something related to my husband's health problems, and it might be hurting my body.

So when I heard about 1Hour Break I was immediately intrigued.

• First all natural oral spray that relieves stress & anxiety.
• Made from Kava Kava root, widely known in Hawaii for its stress-relieving properties.
• Made more effective by adding three herbs that help with relaxation; Lobelia, Passion Flower, and Lemon Balm.

Check out this awesome infographic:

I haven't tried it yet, but I'm looking to get more info (and hopefully win a bottle!) during their Indiegogo campaign launch Twitter party on Tuesday, March 24, 2014 from 6-7:30 PM (PST).

Because if an herbal remedy can help me quell the unhealthy moments of panic I sometimes feel, that would be pretty great.

The makers of 1Hour Break are launching an Indiegogo campaign to raise money for manufacturing and bottling costs without getting big investors involved. The goal of the Twitter party to help open up the discussion on anxiety and give away great prizes!

RSVP for the Twitter party HERE!

Will I see you there?

Because of Chronic Illness

Warning: This is not going to be a happy blog post. But it is a necessary one. Because no matter whatever else I blog about, this is always in the background.

Lately it is in the forefront.

Now that we're past the middle of the month I feel I can safely say February 2014 will probably go down in history as one of the cruddiest and most stressful for Mark and I.

Technically, I suppose everything is really happening to Mark. Seems like everything that isn't a major medical crisis is afflicting him. But see, when you're married, the things that happen to your spouse, happen to you too.

Normally I feel like Mark is being a little dramatic when his attitude turns to thinking the world is out to get him or it seems like nothing will go right for him.

But this month? He has every right to feel that way.

The 3rd, 5th, 6th, 12th, 13th, 14th, and at least the morning of the 17th have all been shit days around here, plus dealing with all the shit the rest of the days.

We have both been worried, stressed, on edge, touchy, frustrated and snappy, but trying oh so hard not to be.

Valentine's Day was probably the worst day of all. Mark was in a great deal of pain from his fistula surgery, we were trying to figure out how to get some car repairs done and then we had to take a trip to the ER because we were worried about enough blood flow getting to Mark's hand.

We argued and I cried. My poor dad had to deal with my scary female emotions when he took me to get a prescription for Mark, and stupid cat food.

I felt like a schmuck of a mom because we didn't get any sort of Valentine's treats for the kids, had to order them a pizza and leave for the ER. I kept calling them to apologize and say I love you over and over again.

My husband is a very unhappy camper right now and I'm having a hard time holding it all together for us both. I'm trying so hard to be kind, considerate and helpful to him, but sometimes he bites my head off and then I feel defeated.

I tell you this because having a chronic illness and loving someone who has a chronic illness is sometimes really damn hard. And I'm just completely unable to sugar coat it.

I can put on a brave face till the cows come home. Mark can be a super trooper all his life. But sometimes it just plain sucks.

Sometimes it's miserable.

And sometimes you really are justified in feeling like the sky is falling, that nothing will ever go right for you again, that all the love you feel for someone doesn't make a damn bit of difference and you just want to crawl under a rock.

This is not melodrama. This is real.

This is part of who I and we are because of chronic illness.

How Irritation and an Insulin Reaction Turn Into Gratitude

My husband had a nasty insulin reaction last night. He hasn't had any so bad in quite awhile. He was alone downstairs after we put the kids to bed. I was upstairs in our bedroom watching Grey's Anatomy and Scandal, drinking a cup of hot chocolate and trying to get over how thoroughly frustrated I was with how our evening had gone.

I'm seriously more irritated than I've been in a long time, and to top it off, I'm sitting in a squeaky fucking chair!
— Jennifer Hall (@JenAnnHall) October 25, 2013

I was up there thinking how happy I was to just BE, me and the TV, and that yummy cup of hot cocoa. The stress of the evening was slowly melting away as I lost myself in my favorite shows....

It wasn't until the first commercial after Scandal started that I decided to run downstairs with my empty I Love Bon Jovi mug.

Mark was lying on his back in the middle of the living room floor. This isn't actually unusual of him; he often decides he would prefer the floor to the couch. So I wasn't immediately alarmed. But then I said something to him and he only half-heartedly mumbled. Still, I thought maybe he had just dozed off. Remember, his blood sugar hadn't gotten this low for quite awhile, so that wasn't really on my radar.

Then Mark made some other sort of noise and as I moved closer to him I saw that he was extremely sweaty. Then I knew.

I fumbled to retrieve his insulin pump from his pocket. I suspended it and got a cup of yogurt from the fridge. I was able to feed him the yogurt pretty well. I got another one, but he had laid back down so I waited to see if the first cup was going to help enough to make him more coherent. After several minutes, I could see he wasn't getting any better, so I decided to give him a shot of glucagon.

I know that will make him better, so I just sat on the couch and waited. After a few minutes he sat up.

I asked, "Are you feeling better now?"

He replied, "I guess." And then, "I'm sorry."

Mark often apologizes when something happens with him. It breaks my heart. He says he's sorry I have to deal with it. Well, yeah, I am too, but....I love you.

Somehow this segues into gratitude. Because I am grateful for....

1. My knowledge of Mark's Diabetes and how to help him.

2. Glucagon injection kits that I can be assured will fix him right up when food or drink isn't an option.

3. My earlier mood not being even an iota of a factor as I went into "help Mark mode".

4. Mark's body being so darn strong in spite of all it has been through. I don't even know how it's possible. None of us do.

5. My cat to keep me company while I fret. Cats may have snooty tendencies, but they know when you need them.

Know what else?

6. The ability to pause my show while my husband has an insulin reaction.

7. The store still had the Halloween costume my daughter had her heart set on.

8. Cheap candy buckets for only $1 because costumes are not cheap.

9. Nonfat frozen yogurt.

10. That I'm smart enough to figure out why my new blog header was blurry and how to set my old URL to redirect to my new one. That last part was a big relief!

This Day Means Nothing

It doesn't matter that a year ago today my husband was admitted to the hospital for observation due to possible arrhythmia.

It doesn't matter that in the middle of the night, about 3:30 AM, I was awakened by my cell phone ringing. It means nothing that this wasn't the first time I'd gotten a phone call of this nature.

It doesn't matter that the person who jarred me awake was a doctor at the hospital where Mark was only spending the night for observation.

What the doctor told me doesn't matter. That Mark had experienced arrhythmia and that it had stopped his heart.

It's not important that the doctor went on to tell me they had shocked and rescusitated him, then moved him to the ICU.

It doesn't matter that less than an hour later a nurse called me back and told me I may want to get to the hospital as soon as I can because he was real sick and they were worried.

It was no big deal when I called my friend and dad over to help me with my kids and transportation, or when I called Mark's parents to tell them what was happening.

It's inconsequential that what transpired over the next week sent our loved ones, Mark and myself into a tailspin of stress, worry, fear and grief.

The changes that have come as a result of these events don't matter either.

None of this means anything nor matters because I don't want it to. Because I don't want it to sit on our shoulders, pressing down, threatening to suffocate us with continuing stress, worry, fear and grief.

It all mattered at the time. But my husband made it through that trauma. He survived it. He is still with us.

That is what matters now.

Hope, love, endurance and strength are what matter.

For better or worse, in sickness and in health are what matter.

Always.


Linked with the Yeah Write Weekend Moonshine Grid.

Tainted Christmas

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.....

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.

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.

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....

Fine

Source: Uploaded by user via Jennifer on Pinterest

I have issues.

I'm a mess.

And I don't know why.

Well, I'm not totally stupid. I basically know why. But, I don't completely know why.

For about a week now I've felt so....just....umm....

I've been quiet unless I needed to speak, not smiling much. I feel so....

What?

What am I feeling?

I'm pretty sure it has to do with all the ups and downs in my life. There are so many it's practically dizzying.

I mean, how does one deal with her husband being fine one day, to nearly dying, to (seemingly) fine again? But not. Especially when it's not even the first time.

How?

How does that happen??

And how am I supposed to feel about it?

The other day, we were talking about the possibility of refinancing our house and Mark says, "Lower payments will be good for you down the road."

And then he realized what he was saying, and said, "Or....us."

God.

He says a lot of things like that, and not only to me. He's been trying to work up the gumption to make videos for the kids in which he talks to them about things, giving his fatherly advice. You know, for when he's not here.

The topic of Mark's possible impending departure from this world has been at the forefront of our minds since March 1st.

And the need to get his blood pressure checked out at the ER sends me running to sob in the shower. Every. Little. Thing. Is scary now, and the what-ifs bombard my mind.

Yet he is still very much with us.

He came home from the ER and insisted we go out for the day.

Anytime he steps foot into a hospital, I expect him to be admitted.

It is really hard to juggle this stuff!

Imagine my arms stretched out, the good on one side, the bad on the other, playing tug of war.

I am always focusing on the positive, remembering that he's "not dead yet". Mark is here and we are together, loving each other and our kids, trying to make the most of what we've got. I am an Attitude Ninja!

You know how one can be great in a crisis, but break down after the dust has settled? That's me. So I think that's partly where I'm at. But also, the constant worry of losing Mark right at the surface, all the time.

It's just....hard.

::

My daughter is wrapping up 6th grade with a big "Who Am I?" project. She has to write several poems and stories for it. She gave me permission to share the following:

Prompt: My greatest sadness


The Time When My Dad Was In The Hospital


My dad was in the hospital in the beginning of March. It was very, very devastating. He stayed in the hospital for almost 2 weeks. Almost the whole family came to Marysville. It was so sad for everyone there. But one day my dad woke up crying that he wants my mom, my brother, and me. So my grandpa took us to the hospital to see my dad. I was happy to see my dad was getting a little bit better. But one day he got worse, so bad he wasn't able to talk, or pick up his hands. All he could do was nod or shake his head yes or no. But then he got better after like 2 or 3 days, and was able to talk, but it was like a mumble when he talked. So then one day he was able to sit up and stand up and was fully understandable. And in 3 days he CAME HOME! And I was happy that he was home. But also scared, because I was afraid that it might happen to him again. But it hasn't, so I'm not as worried now.


Linking up with Shell's Pour Your Heart Out and 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.

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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?

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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.

• 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.