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

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

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

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