Breathing Through the Journey

Okayyy… hello again.

I know I’ve been very MIA with my blog updates, and honestly, life has been life-ing lately.

For anyone new here, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension. I spent three weeks in the hospital, and during treatment, we also had to make the heartbreaking decision to terminate the pregnancy.

So yes… it has been a season.

The past month has been full of healing, adjustments, setbacks, progress, and trying to feel like a normal human again.

Recovery Update

Last time we talked about medicine, I shared that we would likely be starting the “miracle drug” soon.

Well…

I started it.

So far, no brand-new side effects—just the side effects I already had deciding to become louder and more dramatic while my body adjusts.

So what does that mean?

It means Imodium is currently my best friend, and my face/body likes to stay red from flushing. Cute.

Right now I’m only on half my dose and won’t start the full dose until April 23rd.

My numbers are improving, but they’re still not where they need to be yet.

We are still very much in the year of recovery.

I’m learning how to manage everything better while slowly trying to gain my life back. My biggest hope is that by the end of this year, I’ll be off the pump and onto all oral medications—as long as I keep responding well and continue progressing.

The Hard Part Right Now

Now for the less glamorous update.

I’m currently in what I lovingly call hell week.

If you know, you know.

This is the rough stretch after changing my site, and it is brutal. Usually the worst days are days 2 through 4, and as of today, I’m two days in.

This time the pain started within the first 24 hours.

I think part of the issue was not having my dry site in for long enough beforehand, because by day one I could already see redness and inflammation starting.

Today it is bright red, swollen, angry, and honestly rude.

The angry belly is back.

I’m doing all the remedies—ice packs, meds, creams, patience, deep breathing, mental negotiations with myself.

But it still takes so much energy.

Trying to remain calm.
Trying to breathe through the pain.
Trying not to snap at innocent people.

This week will likely be a cycle of sleep, ice packs, work, meds, and counting down the days until it settles.

Finding Normal Again

Even with all of that, I’ve also had moments where life has felt normal again.

Brandon and I started going on walks.

Just ten minutes for now, but we’re working our way up. It has honestly been such a peaceful way to start our mornings.

I also went to my future sister-in-law’s bridal shower, drove the 40 minutes there, and then drove about the same distance to a friend’s house afterward.

That may sound small to some people, but for me, it felt huge.

I haven’t done something like that in a while, so it felt really good to have the strength and confidence to do it.

Things to Look Forward To

Our May trip to Pittsburgh had originally been canceled, and we had even tried selling our concert tickets.

At the time, it felt too expensive and not worth the stress. The trip was supposed to be our chance to breathe a little after everything that happened this fall and winter.

Then we randomly checked Airbnbs the other week… just for a quick peek.

Almost everything had dropped more than half the original price.

Our tickets still hadn’t sold, so we looked at each other and said… okay, we’re going.

So now the trip is back on.

We are so excited to get away for a few days. I’ll still be working half days for two of those days, but realistically we wouldn’t have been doing much in the mornings anyway.

We also went on a little shopping spree for the trip.

And by “we,” I mean Brandon did.

He has lost a lot of weight with the new diet and all the house projects, and I have to say… he is looking good too.

A very deserved shopping adventure.

Meanwhile, I’m still trying to figure out what to wear because if I’m inflamed or pants hit the wrong spot, it can make my SubQ site really uncomfortable.

So fashion is currently a tactical operation.

Home Projects & Heart Projects

We also decided to start another side project for the house… a patio.

I miss sitting outside and enjoying fresh air. We have the sunroom, but it’s just not the same as being outside when the weather is nice.

We found a way to make it happen while keeping costs reasonable, and if all goes well, it should be ready by Memorial Day.

I’m genuinely excited for this one.

We also have a tattoo appointment in May in memory of our baby boy, Wyatt.

Although we never got to meet him, he was still part of us.

And in many ways, he saved my life.

We still believe we’ll have a family one day through surrogacy.

We are hopeful a family member may be able to help, but that is a journey for another season—after I’m healthy enough to go through egg retrieval.

To Close…

Life lately has been exactly that—recovery and real life.

Some days look like pain, ice packs, medication schedules, and frustration.

Some days look like morning walks, trip planning, patio dreams, and hope.

Some days somehow look like both.

And I’m learning that healing doesn’t always look graceful.

Sometimes it looks red, swollen, emotional, funny, hopeful, exhausted, and still moving forward anyway.