Aaron Blocker

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Aaron Blocker

Rare disease and IBD advocate since 2010, raising awareness, sharing resources, and empowering patients.

Living with Crohn’s and Hypophosphatasia, I work to educate, advocate, and support those navigating chronic illness.

11/07/2025

TREMFYA infusion #2

I had my second infusion this week. Here’s what I’ve noticed post infusion and what has changed after the first one. ⬇️

Since my first infusion my symptoms are better.

I had a fissure and some blood loss, that has healed up and my labs look better.

After my first infusion I was very fatigued. I’m much less fatigued this time.

Overall things are trending in the right direction. I’m feeling much better.

Still having some minor symptoms but hoping now that I’ve had my second loading dose I’ll get even more improvement.

10/07/2025

This week I had my yearly Rare Disease Appointments in Nashville.

I got some good news at this one!

Once a year I get a kidney ultrasound to check if there’s any damage to my kidneys from Hypophosphatasia and I also get a bone scan every other year to see how my bones are doing.

Thankfully my kidney ultrasound was normal and my bone scan actually showed a 10% INCREASE in bone strength in my arm!

This is a significant increase since my last bone scan. Meaning Strensiq ( my enzyme replacement therapy is working)

Overall it was a good appointment and things remain stable.

30/06/2025

One thing about chronic illness I don’t think people understand.

It’s legit like having a second full time job and I don’t think people without chronic illness understands.

We have to manage all the doctors appointments, calls to/from the doctor, dealing with the pharmacy and insurance companies, prior authorizations… the list goes on.

I spent 4 hours on the phone a couple of weeks ago with the insurance and doctor’s office about a procedure. In one day, 4 hours.

There’s no great system in place to help either because if we don’t get involved in certain things then unfortunately they won’t get done.

What about you? Do you feel like it’s like having another full time job? How do you manage?

27/06/2025

Injection Realness.

This is one of 3 doses of my rare disease medicine I do each week.

And it gets really hard sometimes to continue to do them when they’re so painful.

Don’t get me wrong I’m grateful for this drug. But doing 6 injections a week for the last almost 8 years that are painful and I have scar tissue to breakthrough gets challenging.

It makes it hard to stay on track sometimes as well. It just gets mentally and physically draining to have to do so many of these painful injections.

The alternative is much worse I know that but I think it’s fair and valid to acknowledge how hard this is.

20/06/2025

I’ve always stood up for science and the harms of pseudoscience.

Right now we are seeing pseudoscience being pushed at high levels. We are seeing anti-vaccine advocates who question some of the best science we have being put on prominent vaccine advisory committees.

Science is under attack in a way I don’t think we’ve ever seen and the impact will last for decades.

People will be harmed even if you don’t think so, they will. Misinformation kills.

Staying silent isn’t an option anymore if we want to continue to find treatments for diseases. Keep preventing the preventable diseases and finding cures.

This shouldn’t be political. We should all want this. We should all want to support the science that saves lives and truly keeps us healthy.

16/06/2025

My Infusion Tips:

Getting an infusion can be daunting if you’ve never had one before.

Here are some of my tips to help.

1.) Hydrate! Hydrating the day before and day of the infusion helps with getting the IV started. I’m a very hard stick and a lot of times IBD patients are dehydrated in general. So try to hydrate beforehand.

2.) Bring Entertainment.
- Most infusions take longer than an hour so having a book to read, something to watch or just anything to distract you can help pass the time.

3.) Bring Snacks
- Making sure you aren’t hungry is beneficial because it just makes being stuck there miserable. So try and eat or bring some snacks that don’t hurt your belly.

4.) Wear Comfortable Clothes
- Just be comfortable. Often times you get some Benadryl and makes you tired so wear comfortable clothes, get comfy in the chair and take a nap.

5.) Rest After
- Plan for some rest time after the infusion. Between the pre-meds and the infusion itself can make you tired just plan for some rest.

What are your infusion tips?

11/06/2025

Scenes from my first TREMFYA infusion.

I had a nice little room with a TV.

I brought some entertainment and snacks.

Overall it wasn’t a bad experience. Felt fatigued the last few days. Will get loading dose #2 in 4 weeks.

09/06/2025

After 10 years on Humira for my Crohn’s I have officially transitioned to TREMFYA.

Was more nervous than I anticipated but even after living with Crohn’s for 15 years it’s still nerve-wracking starting something new.

But I’m happy to finally be getting some medicine that will hopefully get me back into remission.

Here’s to new beginnings!

31/05/2025

“I don’t always look sick.”

But that doesn’t mean I’m not fighting every single day.

Chronic illness isn’t always visible — some days I’m smiling, others I’m hooked up to an IV. This is the reality so many of us live with: bouncing between moments of strength and moments of survival.

💬 Have you ever been told, “But you don’t look sick?”
💜 Drop a 💜 if you’ve felt unseen in your chronic illness journey.
📲 Share this to help others understand that illness isn’t always visible.

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