14 Years Later – A Family Room Perspective

Full disclosure: Out of all the blogs I’ve written, I’m particularly proud of this one. I really hope you take the time to read the whole thing (the whole article can be found here & also again at the bottom of this page). I poured my heart and soul into this particular piece, as sitting in this room brought back flooding memories into my heart and mind. Our family spent a lot of time on this floor, sometimes particularly in this room. I hope this resonates with patients that have gone through similar serious situations and also with the family members who might have had to say goodbye to a family member at one point not knowing what the outcome would be.
Today I celebrate 14 years living with this diagnosis; a day that would alter the course of my entire life, unknowingly. There was so much we didn’t know that day – the bad & the very good.

To read the full article, click here

This room is full of emotions. This is the room that 14 years ago, my parents would be pulled from and told that I have sepsis, pancreatitis, and needed surgery for ruptured cysts from endometriosis, and also later told that this might be a goodbye.

Goodbye.

It’s a strange notion, knowing you survived death.

I “celebrate” my diagnosis day on July 13, 3 days after a milestone birthday. Just a young girl navigating the world when suddenly shocked by Crohn’s Disease.

I was so fragile, my body being kept alive by TPN (Total Parenteral Nutrition). There was a picc line placed in my left arm & through that line, nutrition was given to me through feedings to my heart.

Today is the first time I walked back into the family room. It was eerily quiet enough to hear a pin drop, but my thoughts were louder than my head could contain. What did these 14 years contain that this room could barely hold?

Full blog here: 14 Years Later: A Family Room Perspective

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To read the rest of this blog (I highly encourage it!), please click:

Shout Out to the Caregivers

Shout out to the caregivers.

The ones who take off from work to be with us during long and sometimes tough procedures.
The ones who would drop anything to take you to where you need to be.
The ones who hold you when you cry and make you feel safe when you are most vulnerable.
The ones who would do anything to switch spots with you in a heartbeat and want to take the pain from you.

Shout out for staying in my hospital room on a cot, watching me sleep while you get none.
To the ones who attend every single appointment with you, taking the time out of their jam-packed day to listen to our options and how to move forward.
To the ones who ever give up on us, when we want to give up on ourselves.
To the ones who kiss us in our hospital beds and sometimes, even crawl into bed with us.
To the ones who drop everything to come and make sure that you are situated properly.
To the ones who don’t know what they can do and fear is plastered across their face.
To the ones who lose just as much as us when we are hospitalized, require surgery and have a much longer road ahead of us.
To the ones who never let us say “I quit”.

See the rest of the post by clicking below.

 

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See original content at:  Inflammatory Bowel Disease . Net

Being the Sick Friend

The unspoken label no one wants, but is referred to anyway.. the “sick” friend. Not everyone has one, but in a world full of amazing scientific research, as well as the best diagnostics that we’ve ever had….. there is likely more than one in a group of friends.

I’m not talking about the friend that has migraines once in a while that seem to go away with Excedrin. I’m talking about the friend that misses parties, weddings, or their own graduations because they are too sick to leave their house, their hospital bed, and their safe space.

I’m that friend

As much as I hate saying it out loud, much less typing it, I’m that friend. I’m that friend that has to send text messages that start with an apology and usually end in an “I promise we’ll catch up soon.” I’m the friend that makes promises that I can’t keep. I’m the friend that’s easy to drop, gets left out of group text messages, and soon, doesn’t get invited to nuptials that as kids, was the only thing best friends dreamed about.

I’m the friend whose illness is inconvenient, but not just to me. It’s inconvenient for someone trying to plan dinners. It’s inconvenient when you think I’m not the life of the party because I can’t make a drunken toast at a bachelorette party because my meds interact. (I’m still me).

I’m the friend whose hospitalizations, procedures, and doctor appointmentsyou get sick of hearing about. Sure, you were very supportive when I found out I was sick, but where did you go after?

I guess I was a friend when it was convenient.
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to read the rest, read the original content here: Being the Sick Friend

The Guilt of Failing Meds

Let’s talk about an uncomfortable topic today: when medications fail you.. rather when YOU failed medications.

There is much guilt, anger, and denial that is not talked about enough, and I hope that through this piece, we can come together and speak about what isn’t spoken about enough: failure. When we were growing up, we were taught that from all mistakes, come lessons. We learn, we gain wisdom, and we grow. But what about when the failures aren’t our fault?

Let’s talk about failing a medication that was supposed to be “one of the greatest medications to treat “disease A” and you immediately fail it. What then? There is a sense of hopelessness that rushes over you of guilt that maybe you are that patient. The patient who doesn’t respond to any meds. “What did I do? Am I at fault? Could I or should I have done something that could have prevented this?”

You are not your prescription failures

(You’re simply a unicorn that is hard to treat because your genes are simply magic).

I’m going to be very transparent in this article. I’m TERRIFIED I will fail this next biologic. There is a certain guilt that resembles shame when you fail a very expensive medication. You are forced to put all your eggs in one basket. It’s not talked about enough.

After you fail all oral medications available to you & realize that the remainder of your life you’re expected to take these drugs to have ANY quality of life & to control active disease. There’s a certain emptiness. And a LOT of guilt.

Fear of failing

There is so much energy (doctors appts, procedures, weekly labs) that go unseen, but the most invisible is FEAR. fear of failing. Time after time. GUILT. That you spend so much money per year trialing new drugs to improve quality of life. No room for error for many of us.

After SO many failed attempts, I don’t blame patients for feeling self-shame, because I’ve been there. I’m there now. I cry when I think of finding out I had RA after becoming allergic to Humira – a blessing in disguise. I cry when I think about the number of attempts we gave Humira.

 

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Read the rest in the original article here:https://inflammatoryboweldisease.net/living/guilt-failing-meds/