Chronic Illness/Autoimmune, fmla, Infusions, short-term disability

FMLA Update – Week Two – Five

For the past month of my FMLA leave, I have been trying to balance living in the moment and doing things with friends and family while also taking care of my health.  I’ve begun taking longer walks than I had previously over the past month and even tried some yoga for arthritis.  Though it felt… Continue reading FMLA Update – Week Two – Five

Chronic Illness/Autoimmune, non-profit

A Big Announcement

I realized today is exactly one month since the last blog post that I’ve written.  Everything since has been written by my wonderful, caring husband (for Alex’s Caregiver Corner) who has been helping not only with covering blog posts, but also by being my rock during this hard time.  My health has continued to worsen… Continue reading A Big Announcement

Alex's Caregiver Corner, Chronic Illness/Autoimmune

What Is a Spoonie?

Over the past few posts, I have discussed caring for a spoonie, the stress of social situations, and helping a spoonie. After all this, I think it is important to explain what a spoonie is to those who may not know. Some people might know what a spoonie is already, but for those who do… Continue reading What Is a Spoonie?

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

Alex's Caregiver Corner, Chronic Illness/Autoimmune, Infusions

De-stressing Family Situations

Hello everyone, Alex here again. Lauren had her infusion today, so I decided to do another edition of Alex's Caregiver Corner. Today, I want to talk about family and friends, those wonderful crazy people that helped raise you and made you the great person you are. Family and friends can be great, but when you… Continue reading De-stressing Family Situations

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, 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, 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, Travel

Theme Parks: Spoonie Style

Though it can be rough to travel and enjoy vacations with a chronic illness(es), many theme parks across North America, Europe, and Asia make an effort to help make the trip a bit easier and more enjoyable.  Many parks have accessibility programs for guests with disabilities and/or chronic conditions.  In this post, I am going… Continue reading Theme Parks: Spoonie Style