I am a face of “Invisible Illness”. I want to show you what one symptom of living with an “invisible” me is like, in hopes others struggling with illness, disease & the purgatory of Undiagnosis know “I see you” to give others insight what my invisible illness looks like. So let me take off my mask..
I live with multiple Autoimmune diseases; often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with Autoimmune diseases, like Crohn’s Disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.
My invisible illness means taking upwards of 20 pills a day.
It doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,. Caregiver/Family tip: They may not always know what to say or how to offer help, but even offering to come over, sit with they & just stay awhile speaks volumes. A little help gives a lot of hope. Pain is incredibly lonely.
to read the whole article, please visit inflammatoryboweldisease.net
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.
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
To read the rest of this blog (I highly encourage it!), please click:
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.
See the rest of the post by clicking below.
See original content at: Inflammatory Bowel Disease . Net
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?
Photo by Pixabay on Pexels.com
Read the rest in the original article here:https://inflammatoryboweldisease.net/living/guilt-failing-meds/