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, Infusions, Medical Benefits

Healthcare Bluebook

In the United States, health care and cost of services can vary between both doctors and facilities.  The most extreme example of this that I have personally witnessed is the cost for both Entyvio and the nurse to infuse it.  I have received Entyvio infusions from four different locations – two hospital outpatient infusion clinics,… Continue reading Healthcare Bluebook

Chronic Illness/Autoimmune, fmla, short-term disability

FMLA – Week One

Week one of my medical leave has been going well.  Though I still feel weak, fatigued, and pained, I can feel myself and my body moving in the right direction.  I tried not to put too much on my plate, focusing mostly on self-care, getting my FMLA and Short-Term Disability paperwork filed, and making appointments.… Continue reading FMLA – Week One

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

Brainfog & Painsomnia

Hopefully I can get through this post without losing my train of thought… Brainfog is sometimes my most frustrating symptom.  Consistently loosing words, names, or what I was going to say is worrisome to me – as someone who has been known to be good at remembering details.  It’s something I’m often concerned is going… Continue reading Brainfog & Painsomnia

Chronic Illness/Autoimmune, Non Profit, non-profit

March Awareness Month

March is the month of awareness for endometriosis, autoimmune diseases, and colorectal cancer.  I’ve written and rewritten this post in the notes on my phone a few times.  All three of these things are very important to me, so I wanted to make sure I got it right.  I am affected by two of them,… Continue reading March Awareness Month

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