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

Chronic Illness/Autoimmune, Medical Benefits

My Home Infusion Experience

I have tried my fair share of medication to find the right one(s) – including Humira, Remicade, and Entyvio.  Humira provided some relief, until my 4-month bout of c. diff – afterwards increasing to weekly injections without a difference.  During my last “loading” dose of Remicade, I began having drug-induced Lupus symptoms.  Though I’m not… Continue reading My Home Infusion Experience

Chronic Illness/Autoimmune, Non Profit

Fund A Life

Today, I want to talk about a non-profit that, though I only recently became aware of, I am deeply passionate about them and their cause.  I first learned of it through a coworker who is the sister-in-law of the founder, Mark Howell.  In October 2012, he was diagnosed with Stage 4 Metastatic Melanoma.  Mark’s community… Continue reading Fund A Life

Chronic Illness/Autoimmune

Slug blood

Now that we’re a couple of posts in, I thought it would be a good time to regale you with a tale of one of my many misadventures.  Since I’m on a biologic and methotrexate, my rheumatologist has instructed me to go to the Emergency Room for labs, blood cultures, a urine culture, and sometimes… Continue reading Slug blood