This Shit is Real

"How are you?"

"I'm good", "I'm fine" or "I'm OK" are the standard answers, whether true or not.

I say them all the time. Partly because there are things I feel like I shouldn't -- or don't want to -- admit.

You know, things that could make me look vulnerable or weak.

Because I pride myself on being a strong person. I've earned it.

But you know what? I still have feelings. And sometimes my feelings get hurt, or weird and hard to understand.

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.

Why it's Become Hard to Talk About My Feelings

This.

This right here is what I have been struggling with reconciling and overcoming in order to be able to share the genuine thoughts, feelings, and experiences of my life right now, specifically as regards my role as a spousal caregiver.

But not only that. Because, you see, everything in my life is colored by my husband's health problems. My other relationships, my parenting, how I see the world...

The Art of Avoidance

Thoughts.

Feelings.

Events.

Good days.

Bad days.

I Don't Want to Talk About It

I've been having a problem lately.

I can't seem to -- or don't want to -- talk about things.

Or, for the purposes of my blog, write about them.

I am referring to my thoughts, feelings, struggles, resolutions, and etcetera regarding my husband's health problems and being his primary caregiver.

It's my biggest issue in life and I don't really want to talk about it.

I don't know if anyone has noticed.

The last couple of posts I've written that have to do with chronic illness and caregiving aren't entirely clear. Even my awful, negative, ranty post -- as honest as it was -- still skirted around some things.

I Don't Think I'm Doing it Right

Twenty-one years ago yesterday my husband and I kissed for the first time.

We were drinking Zimas sitting on a blanket in a park.

I had turned 20 years old the month before. Mark was 25.

We don't know who kissed whom. I think it was mutual.

Yesterday, exactly 21 years later, I had to leave my husband in a skilled nursing/rehab facility.

An Inventory of Feelings

Everything that has occurred over the past year with my husband's diabetes and dialysis complications has caused many changes that we are still grappling to deal with and adjust too.

It doesn't happen over night. Just when I think we might be getting the hang of it, we have a terrible day that feels like taking 10 steps backward.

That may not be true, but it feels that way.

Mark and I are both doing our very best to take things in stride. We can problem solve -- how he will get to and from dialysis or having grab bars strategically installed -- but there are many feelings that come with the physical challenges.

You can't really problem solve feelings. Except maybe to express them, get them off your chest.

Sometimes, though, someone's feelings hurt your feelings.

The Caregiving Learning Curve

In the wake of my husband's most recent hospital stay, the wounds left to (try to) heal and his inability to walk, I had a moment when I thought, "Is this all that's left for us? For me?"

Like, is taking care of my husband, accompanying him to appointments, refilling his meds....all the things he needs these days, what my life is now? Am I much more of a caregiver than anything else?

This thought made me sad. For several reasons....

What about our marriage? Our friendship? Being a couple, in any sense of the word? I'm afraid that will all fall away....

I've never felt unfulfilled by "just" raising kids, so why does the thought of "just" taking care of my husband make me feel differently?

9 Quotes to Help with Grieving

Ever since the tragic event that occurred in my town last Friday,

I haven't been able to give a darn about anything I would normally blog about.

Between that and the grief and sadness I've already been feeling from

all the changes in my husband....plus all of the family losses my BFF has experienced this year....

I thought I'd share some helpful, inspiring, VALIDATING

quotes about grief and loss. To help myself, and maybe you too if you need it.

There Has Been a School Shooting in My Town

On Friday morning, October 24, 2014, at 10:39 AM, freshman Jaylen Fryberg brought a gun to Marysville-Pilchuck High School, invited five of his friends to have lunch with him, walked into the cafeteria and shot all five, two of whom are his cousins. He then shot himself.

source

I was 3.9 miles away, welcoming my husband home from dialysis and doing a little housework.

A few minutes later the local news app I use pushed a breaking news notification to my phone. I very often don't even pay much attention to them. I did tap this one and read a headline about a possible school shooting here in Marysville.

"Oh God, no", I muttered.

And immediately went into GET-ALL-THE-INFORMATION mode.

I was holding out hope that the word "possible" would turn out to mean that that's NOT what happened.

Alas, it was true.

I'm Having a Hard Time

This is going to be a completely selfish and self-serving post.

I haven't let on much to anyone, but I am having a really hard time lately.

Because my husband is having a really hard time.

The cumulative effect of all he's been through this year is weighing on us heavy right now.

No, there hasn't been any one BIG thing. It's been a bunch of small-ish (compared to, say, being in the ICU with a tube down his throat being told he was going to die) things.

You guys -- you lovely people who read my words here -- know this. You know this year has been all kinds of up and down (and upside down)for my family.

At this time, Mark feels like it's all just down.

He is so frustrated. Downright angry sometimes.

When You're Absolutely 100% Just DONE with a Relationship

I have had a very, shall we say, rocky relationship with the woman who was my step-mother for about 30 years.

She came into my life when I was around five and a half, not long after my parents separated. She moved in with us (my father retained custody of me) and I think things were OK, for a little while at least.

As time went on, she was pretty hard on me, even though I was a very good kid, by all accounts. She expected me to love and appreciate her automatically, pushing her boundaries as my dad's girlfriend (and eventually wife) to the point of trying to take my mother's place. This was a sore spot for her, but it wasn't our only problem. It was certainly no reason to treat me the way she often did.

You Can't Convince Me You Have All the Answers

I am the Queen of the Grey Area. I sit on the fence in the middle of the road.

This seems to be largely seen as a negative thing, but it's not that I don't have any personal convictions or strong opinions on anything. I have them, but you do too. Which one of us is right?

To me, seeing the grey areas and being a "middle of the road" kind of gal simply means that I am tolerant, open minded and less judgmental than someone who tends to be more extreme.

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....

Please Don't Begrudge Me

be·grudge

biˈgrəj/ - verb
1. envy (someone) the possession or enjoyment of (something).
"she begrudged Martin his affluence"
synonyms: envy, resent, grudge

2. give reluctantly or resentfully.
"nobody begrudges a single penny spent on health"
synonyms: resent, feel aggrieved about, feel bitter about, be annoyed about, be resentful of, grudge, mind, object to, take exception to, regret

The little cruise my BFF and I are taking in celebration of our 40th birthdays is rapidly approaching.

I find myself using words like "little", just like I did above, to try to diminish it a bit for others.

To place less importance, to insist that it's not too much or too extravagant.

If I say it's "little" or "short" then maybe I'll deserve it more.

I further feel the need to share how circumstances and stars have aligned in a way that my BFF and her husband wouldn't have me paying for any of it if I didn't insist that I must pay for something.

As if I don't deserve to spend any money on myself.

My husband is jealous that I get to do this. He loves me and wants me to be able to do it, but he is indeed sad that he cannot. Probably also sad that I'm experiencing it with somebody other than him.

I have a friend who also turns 40 this year, but due to her personal financial situation, she and her husband just do not have the funds to do something special for it.

She is jealous of my trip too.

I love birthdays and think that everyone should get to celebrate theirs in some special way, so it does make me sad that Mark's health problems hinder him. I also feel sad that my friend might not have a "fabulous 40".

But here's the thing: I should not be made to feel bad for getting this opportunity. I should not have to apologize for it, nor try to diminish how special it is to me in any way.

It's not fair.

I do deserve it.

I have NEVER done anything like this.

I met Mark just after turning 20. We married when I was 24 and I had babies at 26 and 31. I fell in love and wanted to be married. I've always wanted to be a mom. I made those decisions and I don't for one single second regret them.

But my entire adult life has been about everyone else. I've never "sown my wild oats", had a Katy Perry "Last Friday Night" or "I Kissed a Girl" experience or spontaneously jumped on a plane to Vegas. It took until I was 36 to get my first tattoo!

I have said no to going on girls weekends away, including a very special trip in honor of my friend Emily who died of breast cancer, because I was too afraid that something would happen to Mark and I wouldn't be there.

But something has shifted in me in the last year. I have learned that I cannot control whether or not Mark will have any problems and my presence doesn't automatically make them better. I have also learned that there are others who love him too, and are willing to step up if he needs. My children aren't babies anymore and can absolutely handle my absence. I am not the be-all, end-all.

And maybe I could use a break from feeling like I am.

This is HUGE for me.

I wrote last summer about how we don't take real, just for the fun of it, vacations. That all our trips are to visit family only.

So yeah, if I want to take a few days out of my life the year I turn 40 to celebrate that milestone and where I am in my life, and spend quality time with my oldest friend while sipping drinks with umbrellas in them, I'm damn sure going to.

I'm going to be Brave, and I'm not going to feel bad about it.

Feeling Strange

I'm feeling things I've never felt before.

It's like....a push and pull.

Like I'm cut in half. That there are two parts of me going in different directions.

The two "Mes" are struggling to find the balance.

__________

The Me that has always been is firmly rooted in one place. She is happy there. She is comfortable. She loves and is loved. She knows exactly who she is.

The Me who is emerging is, at the risk of sounding so very cliche, unfolding her wings like a newly formed butterfly. She is testing them out. She thinks they're pretty. But they also scare her, and make her feel uncertain and unsteady.

What does she do with her new wings? How does she reconcile the two parts of her into ONE, fully formed new being?

__________

I know I am allowed to change and grow. I've been doing it all my life, really. But right now, it feels bigger somehow. It's been slower before; feels faster now.

There's a quote/saying that goes:

There are two things we should give our children; one is roots, and the other is wings.

How do I do that for myself?

There's really nothing more I can say about this right now. That's where I'm stuck. It's strange and confusing. But I needed to say just this much. For now.

Disappointment

I never know what to do when someone disappointments me.

I have such faith in people, always giving the benefit of the doubt, that when I end up disappointed, I feel so dumbfounded by it.

My jaw hangs open. I shake my head. Shrug my shoulders. I stammer to say something, anything.

What am I supposed to do with it?

When you thought something was one way but it turns out another way. When you thought some ONE was one way but they turn out to be another.

It's just so very disheartening.

It's not because of expectations. Well, maybe it is, but only in the "I expect people to not be assholes" way. I will never concede that that is an unreasonable expectation. People should not be assholes. Period.

We can all be a bit thoughtless or inconsiderate sometimes. We don't always see what we should and react the way someone thought we would. But when it's only because we weren't seeing the whole picture, we should be allowed to say, "Oh, oops, my bad, I love you and I'm so sorry. I was shortsighted and I will try not to let it happen again", and be forgiven.

On the other hand, when you've given someone ample opportunity to see that they fucked up, that they hurt you, and they still won't try to make it right?

Then they are being an asshole and that is a huge disappointment. Especially when you've bent over backwards for them, given them every possible bit of leeway you could.

It hurts. It's not fair. And at some point you have to draw a line and say ENOUGH.

I'm done. I'm not going to let you do this to me anymore.

I have been witness to two examples of this lately and I am still shaking my head. It is so very unfortunate when someone can't set their pride or just general assholery aside and it causes relationships to be ruptured, possibly irreparably.

There is so much loss there. So much hurt. Scars form. Walls are built.

You may lose that person FOREVER.

But all you can do is insist on being an asshole.

I just don't understand.

Feelings

I am a massive mess of feelings. Not only feelings I currently have, but feelings I've had all my life, whether I could recognize them or not.

I hate my feelings. I resent how easily they are hurt.

Must be why I have a tendency to try to ignore them.

Just like anything you try to ignore, however, they keep coming back, pestering me like a little toddler who wants a piece of candy.

I think I need to name the feelings that continue to plague me. Flesh them out. Hoping that exposing them to the light will cause them to shrink. Take away their power over me.

I feel....

Weak.

Meek.

Alone.

Insecure.

Hindered.

Lost.

AFRAID.

Overlooked.

Raw.

VULNERABLE.

Bitter.

Unimportant.

Guilty.

Stupid.

Sorry.

I emphasize AFRAID and VULNERABLE because I have truly had some scary ass shit happen to me. Of course I'm afraid! I feel vulnerable that more scary shit is going to happen. That scary shit will always happen. And vulnerable to being left alone and sad, and hurt.

I am desperately trying to push my way through these feelings. Trying to do it all by myself because another thing I feel is like I can't talk to anyone about them. No one who I'm not paying to listen. Or it's that there are certain feelings I shouldn't talk to certain people about.

Honestly, none of MY feelings are anyone else's problem, are they?

I lean on my husband a little, but I keep thinking about how he might not be there to lean on one day, so I pull away, even from him. And I know I am going through all of this now, in preparation.

I am overwhelmed by these emotions, tears waiting for any little excuse to spring forth.

How long will it be before the floodgates that have been opened close?

I feel weak and meek, but therapy, and facing one's inner demons, is most definitely not for the faint of heart.

Trying to have patience with the process. I remind myself that I will be made stronger as I learn how to change how I perceive my feelings.

_______
I understand if this post doesn't make much sense to anyone. It doesn't have to, and nobody needs to feel like they should try to make it better. These are just things I feel, that influence my moods, that I struggle with.

“Love is more than simply being open to experiencing the anguish of another person's suffering. It is the willingness to live with the helpless knowing that we can do nothing to save the other from his pain." - Sheldon Kopp


Life goes on....

Linked with Pour Your Heart Out.

Dear inner Child

source

Um. Hi.

It is apparently time we get to know each other a little bit considering I didn't even see you there all this time.

Except, I don't really want to get to know you. Because all you're actually doing right now is pissing me off.

You know, I started therapy because I was worried about the impact of PTSD on me after my husband's two near-death experiences, and the weight of the fear of losing him sitting on my shoulders. That, and my kids. My ACTUAL children. Ahem. I know I need to be at my very best for THEM.

But you? Cropping up and muddying the waters? Is not what I was expecting.

You see, I thought I was actually a pretty well-adjusted person. Didn't think I had much angst or underlying mommy, daddy or childhood issues I had never worked through. Didn't recognize that I have neuroses and hang-ups, that what I thought was other people being mean to me is really my own crap reacting to any given situation (not that people are never jerks, but that's not the point here, stop distracting me!). My parents never showed me a lack of love growing up. They weren't abusive in any way. I had never been abandoned.....

Or had I? See the water getting murky, my little friend?

Not acknowledging you, my pain-in-the-ass Inner Child, is just one more instance of me trying to fight my feelings. To push them away and claim they're no big deal. I'm stronger than my feelings, dammit!

Maybe I am stronger than the feelings you cause me, but apparently not unless I work through them. My therapist says that if I keep trying to push them down and ignore them, they'll just keep resurfacing.

See why I'm pissed at you? I mean, don't I have enough shit to deal with? I have a sick husband and two kids to raise here!

I just want to be a good wife, mom, daughter and friend. You coming around, wanting to play peek-a-boo with me, messes with those things. You make me feel things. Irrational things.

Oh wait. My therapist would stop me here and point out, "Feelings are not rational, Jennifer."

Fine, fine. Whatever.

Do you see what you're doing to me? See my head spinning around like the possessed little girl in the Exorcist? So glad I'm not the pea soup spewing type.

Look, here's the deal: I get that you're there, deep down inside me. I get that it will only be good for me in the long run to work through YOUR issues. But the extra emotions and anxiety you're making me feel, and the way I seem to have no clue how to be with other people right now? Really not appreciating that.

It's making me feel so awkward and like I need to tattoo an apology onto my forehead.

Warning: I am carrying a small bag of crazy right now, but please don't be afraid, I won't spill it on you. At least, I'll try not to.

Sigh. So, yeah, I'll do this. But I don't have to like it. All I can say is, if you're going to mess with my life, I better end up with a heap of new pearls of wisdom to boast about!

(Yes, I realize you've probably always been messing with my life in one way or another. Shut up. Know it all.)

Neurotically yours,
~ JAH

This might not make sense...

My favorite online doctor friend Deborah Gilboa recently shared a blog post on one of her Facebook pages titled "Embracing My Inner Old Lady" that I could completely relate to.

The blogger, Adina, described herself:

My skirts have elastic bands and I refuse to wear anything that isn’t comfortable. I don’t like to clutter my days with too many activities. For instance if I have a doctors appointment, and I have carpool, I will tell my friend that I can’t meet her for coffee, because my day is filled up. 

Well paint me green and call me Kermit, it's like she's in my head!

Except, skirts? What are those? I don't have any. But if I did, they'd be just like hers.

I have a very good reason for not appreciating busy-ness. To me, all it does is cause stress. And because my husband's health problems can lead to so much upheaval, I kind of cherish the calm. I honestly do not understand why some people are always go, go, go, do, do, do.

In fact, it seems that whenever something more than regular, day-to-day life comes up, like say, the Holidays, we're lucky if we make it through without incident. It's very difficult for someone with a lot of medical issues to juggle to have their routine messed up. Keeping Mark as healthy as possible is quite the delicate balance.

I may not lead a hectic lifestyle, but I am rarely bored. Home, marriage, kids, friends, family, errands and appointments, hobbies, exercise, entertainment and blogging all fill up my time. Pretty sure I'd be hard-pressed to look around and not be able to find something to do.

I know this to be true and I swear I am very content with things as they are.

I think I feel held back, however. Like, I am happy with my lifestyle, but I also feel like I simply don't have a choice. I even had a dream the other night that, when I looked into the symbolism of what I dreamed, seemed to be expressing this exactly. That dream is the catalyst for this post. I've often thought about writing about this, but have had a hard time finding the right words.

You see, I have to be available for my family. Not only do I still have children who are too young to spend a lot of time unattended, but leaving Mark alone for very long.....well not only do I worry the entire time I'm away, but he himself seems to be insecure about it since last March.

I am a caregiver. A friend of mine described me as such recently and I was a little surprised. Hadn't thought about it that way before.

I don't mean to sound like some kind of martyr. That's not what I'm trying to say. I do get time alone, I do get to take care of myself (now) and do some fun things.

It's just....staying wrapped up in this cocoon is limiting, I guess. And it's not just the people who need me, but also my vision.

I feel like I try to take a step in whatever direction but am halted by some circumstance. And they are often things I can't do anything about. It can be very frustrating to feel thwarted all the time.

Lack of choice and lack of control. Two things people rail against so much in life. I fight not to let these things get to me. To work around them and make the best of each day.

And like I said, for the most part I am OK. I am used to it, have done and will continue to adapt. I have plenty to be happy about.

But if someone wants me to see an ophthalmologist and have my eyes dilated for the first time in 10 years, spend an hour in therapy, meet with my daughter's counselor and teachers AND go to a Girl Scout meeting all in one day....?

Ain't gonna happen.


Update: I posted a little more about this HERE.

Linked up with Pour Your Heart Out.