Tag: #ileostomy

Please park…

WARNING: ‼️

GRAPHIC CONTENT BELOW

I received and email recently that sent my anxiety way higher than it should have.

The email went something like this..

“If you are able please park in the overflow parking to allow room for our guests.”

The email truly could not have been any nicer. The problem in my mind was two fold:

1.) the overflow parking is a couple blocks away

2.) the words “if you are able”

How exactly does one decide if they are able?

This was the conundrum in my brain.

At this very moment. I may be. However, in a few moments, I may not be.

And this my friends, is what my new disability has caused.

If you’re being 100% honest with yourself, have you ever seen someone park in a handicap spot, get out and seemingly look completely….fine?

I have.

I have judged.

100%

Hence my conundrum.

What if…I’m not able?

What if…my bag explodes and I need to make a quick escape?

What if…I get sick and can’t walk to my vehicle?

What if….

What if…I appear able but I’m really not?

I made the decision.

The anxiety wasn’t worth the walk. I am not able.

I wanted to be able. But this is not my reality.

Disability doesn’t always equal visibility.

Exhibit A

My apologies if this picture is disgusting. This is the shirt I was wearing under my sweater to the event I was serving at…with the email.

About half way through said event, I began to be sick. I’ll spare you the details, however I did indeed need to make the quick exit due to unforeseen circumstances.

I prayed and prayed the entire drive home, with the windows down as I was heaving and trying to be safe.

I don’t have the ability to vomit and we all know I don’t have a colon. So what happens?

Exhibit A happens.

Did anyone notice 💩 flying out of my abdomen at the event?

I have no idea.

What do I know?

If I can, in whatever way I can, help just one person reframe what ability is and isn’t. I’m here for it.

I use to be that person. The one who use to judge. God forgive me.

If you’ve journeyed with me, you know He is in the business of growing me.

May we all remember disability doesn’t necessarily mean visibility.

Invisible disabilities DO exist.

Some days mine gets the better of me. Praise God, He is sanctifying me.

I also thank God for my cute cockapoo who stays by my side through all my sicknesses.

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This I know

I can’t say that life has magically gotten better. That’s just not true. Most days are like ground hog day.

I don’t hate the days.

I don’t hate much of anything.

If I hate anything, I hate mental illness and diseases that plague so many of us.

I have heard from several of you after my last post. If I look at the stats, I would say mental illness hits most of us, if not personally, than perhaps relationally.

What does mental illness look like when you live alone?

It looks like, for me, doing what I know.

I know spending time tucked up with my Jesus is helpful. Even if, cognitively, I can’t go as deep as I normally would. I do it.

Why?

Because the word is alive and active.

I’ve been spending each morning with one verse of my favorite Psalm.

He is my safety. The Holy Spirit dwells in me. I know He is present at THE121.

He and He alone is my safe place.

I sleep.

Some days I can sleep more than others and that’s ok.

I advocate when I have the strength.

Just today, I advocated for more liquid supplements. The Dr wanted me to take over the counter. However, when I’m on short term disability, money is still tight. She heard me and sent a prescription. Thank God for insurance and empathetic doctors.

Physically, I feel better than ever with next to no pain (my pacemaker stitch is being a little spesh).

So I do each day, what I KNOW to do.

I’m so thankful for my tiny house tucked up on the woods that allows me peace and solitude to heal.

Heal physically.

Heal mentally.

Heal emotionally.

Healing takes time. It takes work. It takes each other.

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We must do better

As I write this post, it’s well after midnight. While most days have felt pretty mundane as of late, every now and then (like today), the day is anything but.

On the ‘anything but’ days, it’s typically a doctors appointment that sends the day in a tail spin.

I’ve prolonged writing this post because I needed some time to ground myself, to seek the Lord and make sure that I wasn’t writing out of haste.

I write this post for advocacy, awareness and perhaps to help someone know they aren’t alone.

My first month of recovery felt a lot like trying to catch my breath. Between doctor’s appointments, meals being delivered and friends visiting, there was a lot going on, not to mention trying to learn this new body.

When week 4 hit, it literally felt like I had fallen off the edge in every sort of the imagination. I felt like the earth had stopped moving and I was just here…in mid air…somewhere…

I tried to distract myself by attempting to create things, trying to “do” all that I knew how to “do.”

It all fell so very short.

I just knew I wasn’t…me.

Cue the vulnerability….

My mental health tanked.

The days grew darker and darker.

Nothing I did was helping.

I called my dr.

We can’t see you until March

Not helpful was my reply.

Go to urgent care.

Was theirs.

We can’t see you.

Was urgent cares reply.

Between what felt like sheer absurdity, one kind scheduler in the dark web of Geisinger found one lone appointment with one lone physician “in my area” who could see me the next day.

I took the appointment, trusting it was what God provided.

I explained the darkness. Told him I didn’t think I was absorbing my mental health pill due to my new system.

Are you going to kill yourself?

He asked.

No

I replied.

Then you’ll be fine.

WE HAVE TO DO BETTER.

With tears in my eyes, I advocated hard with every fiber I had left in my being to get my mental health meds re-prescribed to liquid (ileostomy surgeries are notorious for malabsorption problems).

I write this because had I not been a therapist who knows a thing or two about mental health, I wonder where the non-therapist Tiny House (and big house) girls and boys of the world would be.

Sadly, I don’t have to wonder.

It is absolutely not ok for anyone, let alone a physician to declare the mental health baseline to be death.

I have also since advocated for a complete blood work up and found some other contributing factors to my floating out in the abyss. Which, once corrected will also help my mental health.

I write to hopefully remind us all that we all have struggles.

You are not alone.

None of us can know what others are going through.

Ask the questions.

If your mental health is struggling. Reach out. I’m a huge advocate of talk therapy (yes therapists need therapists!) along with medication.

988 is a valuable resource.

As a society, as friends and yes in the medical profession.

We all must do better.

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Learning a new way

As I approach the two week mark of this new broken body of mine there are so many highs, but I also want to acknowledge the lows.

The highs involve being nearly pain free for all but one or two days. For a girl who has lived in chronic pain, I can’t express what this means.

My beloved sister coming to care for me for several days and doing the dirtiest of dirty work (think Mike Roe would have loved to do an episode dirty work).

Being stronger mentally than I have been in months and the ability to lay on the couch with the sun streaming through my puppy kissed windows, does something deep for the soul.

Enjoying the company of friends and laughing until it hurts…more.

I, however, must continue to acknowledge that my body is broken.

With this broken body, it hates new things. In turn, it tries to reject that which is new. Namely in the form of hives.

I have a large outbreak that I have been battling for about the last five days. I’ve said it before and I’ll say it again, I am convinced that in hell, there will be eternal itching.

Unfortunately the hives are underneath my wafer which has to be worn, or else mount saint stoma spews…EVERYWHERE.

This is my current battle zone.

Speaking of Mt. saint stoma. She does spew, with no warning and no control. She also speaks…a lot! So if you’re coming to visit, get ready for the show!

Regardless of the highs and the lows, God is still faithful. I will never be whole this side of heaven. If God heals me or if He doesn’t. He is still good.

All in all, my heart is full of gratitude. I continue to heal. I continue to learn. I continue to lament. I continue to celebrate. Namely, I feel it all.

The highs. The lows. Everything in between.

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