Chronic Illness/Autoimmune

Prednisone, Roid Rage, and Moon Face

I had started drafting this post about a month back, and Dynamo (Steven Frayne) coming forward to speak of his Crohn’s disease seemed like a great reason to finish and post it.  Here’s the link to a wonderful The Mighty article that includes Dynamo’s video and more information on the “MoonfaceForDynamo” movement (link). I was… Continue reading Prednisone, Roid Rage, and Moon Face

Alex's Caregiver Corner, Chronic Illness/Autoimmune

Caring for a Spoonie

As many of you know, Lauren normally writes a post every Tuesday, however this week has been rough.  Because of this, I offered to help and write something for her – creating Alex’s Caregiver Corner, where I will be contributing semi-regular posts. Today’s post is about caring for a spoonie and the adventures (or misadventures) that… Continue reading Caring for a Spoonie

Chronic Illness/Autoimmune

#IBDAdvocacyTag

Megan from The Front Butt Youtuber channel started the #IBDAdvocacyTag, so this week I am answering her five questions to help spread awareness & challenge you to answer them too! What form of IBD do you have? I have ulcerative colitis – specifically ulcerative pancolitis, meaning my entire colon is affected by the disease. Why… Continue reading #IBDAdvocacyTag

Chronic Illness/Autoimmune

Hospital Essentials

As I’m sure many of you understand, I never want to be in the hospital.  I never get much rest, am at higher risk of infection (especially if I don’t have a private room), and would much prefer to be home with my husband and pups.  Because of this, when I am in the hospital,… Continue reading Hospital Essentials

Chronic Illness/Autoimmune, Infusions

Keeping Cozy

Today’s post is a bit shorter than most, as I haven’t been feeling well.  With pain top of mind today, I wanted to touch on what clothes I find the most comfortable on bad pain days. When I’m in a lot of pain, the texture of clothing is a big thing that helps me.  Though… Continue reading Keeping Cozy

Chronic Illness/Autoimmune, Infusions

The Agony of Clostridium difficile

Clostridium difficile (C. diff) typical comes on after normal gut flora is destroyed or altered by antibiotics.  It grows and multiplies – overpopulating the bacteria in your intestines.  C. diff damages cells and mucosal, triggers inflammation, and forms a yellow plaque over the damage.  Common symptoms are fever, cramps, abdominal pain, and uncontrollable diarrhea. Since… Continue reading The Agony of Clostridium difficile

Chronic Illness/Autoimmune, Infusions, Travel

Wedding Planning with Chronic Illness

One of the first things my now-husband and I did once engaged (after telling our families) was pick a date.  Since I’m on Entyvio, which typically has an eight-week infusion cycle, and we knew we wanted a fall wedding, we picked a few dates that would be in the middle of my infusion schedule.  We… Continue reading Wedding Planning with Chronic Illness

Chronic Illness/Autoimmune, non-profit

The Great Bowel Movement

There is another non-profit I wanted to highlight that is very close to my heart – The Great Bowel Movement.  It is an IBD and ostomy focused non-profit focused on empowering patients to start conversations and educate others. The Great Bowel Movement was founded by Megan Starshak & Andrea Meyer in 2010.  Both women have… Continue reading The Great Bowel Movement

Chronic Illness/Autoimmune, Infusions

The Adventure of My Port & Me

February is my Portiversary month!  I have a single lumen power port that was placed two years ago. Once upon a time, I had good veins that nurses were able to access.  After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt… Continue reading The Adventure of My Port & Me

Chronic Illness/Autoimmune

Changing the Conversation

Being on multiple immune suppressants, especially in a year where there are so many flu-related hospitalizations and deaths, I work really had to control my environment and limit my exposure to germs.  Even though it takes extra spoons, I always wipe down my desk, phone, and chair at work each morning and at any time… Continue reading Changing the Conversation