Alex's Caregiver Corner, Chronic Illness/Autoimmune

Helping Your Spoonie

Some of you may already know, but Lauren has not been feeling well.  Between her lack of energy and the new added responsibilities at work, her spoons have been at an all-time low.  In an effort to help her, I figured I would make Caregiver Corner a little more regular.  In addition to writing more,… Continue reading Helping Your Spoonie

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

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