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 since I was in the hospital, and I’ve been trying to balance work, family, friends, health, self-care, and The Misadventures of a Spoonie without much success.  This past month has been mostly filled with work, some family time, and interrupted sleep/painsomnia with some eating sprinkled in when food actually sounds good.  (Typically, banana bread with chocolate chips, in case you were wondering! 😉)  Thankfully, I love what I do and the people that I work with, which made the past month much more enjoyable, even though my health wasn’t great.

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Since before I went into the hospital, my husband and I have been discussing the possibility of me using FMLA and Short-Term Disability.  Because I enjoy my job and have workaholic tendencies, I have been putting off this decision, but have reached a point where I know my health will continue to decline if I don’t take this time to heal.  I feel really lucky to have the support system I do in making this decision.  Though it’s been difficult, having the support of Alex, other family members, close friends, my incredible supervisor/mentor, and the C-level team of the company I work for has made the decision easier.  With each person I spoke to and felt supported by, a weight was lifted from my shoulders.

This will be a big shift for me, but I am looking forward to having this leave – which begins next week.  My main focus during this time will be getting second opinions, trying to find additional answers, working with doctors to create a treatment plan that works better than my current one, and all the trial-and-error that comes along with it.  As many of you know how exhausting “doctor shopping” can be—and any travel that comes along with it—I will also be trying to be better at practicing better self-care and listening to my body.  Personally, writing content for The Misadventures of a Spoonie and The Great Bowel Movement is quite cathartic for me.  Being able to express my thoughts, feelings, pain, and experiences through writing helps to keep stress levels down, and I love being able to help others in the process.  Through this blog, I plan to document my experiences of being on FMLA, applying for (and hopefully getting) Short-Term Disability, doctor’s appointments, and any major changes in my diagnosis or care.  Plus, I have a stack of mystery novels to read while resting with my pups.

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Here’s to the next three months!  I’ll be posting again soon. 😊

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 Inflammatory Bowel Disease, ulcerative colitis and Crohn’s disease (respectively), and met at Camp Oasis – a summer camp program established by the Crohn’s & Colitis Foundation.  After establishing a bond and becoming friends, they created GBM, which is run by volunteers, a collection of patients and caregivers, who are equally as passionate about this movement.

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The organization started with the shirts – Andrea’s idea and Megan’s design – as a way to start conversations, empower patients, and make an invisible illness visible.  When people ask about the shirt, an opportunity is presented to share your story of how IBD affects you – it’s a tool to increase awareness.  As I mentioned in “Changing the Conversation,” my “Ask Me About My Colitis” shirt was a great resource in helping me educate my co-workers on one of my chronic illnesses and why I was taking the extra precaution of wearing my Vogmask.  With my first shirt order, I also received two pins, a bathroom card, a “Mad Libs” style IBD elevator pitch, and information for caregivers.  I wear the two pins on my coat, which have also started conversations and education.

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They also publish articles and provide resources and tools to patients and caregivers.  Though their website is in the process of being redesigned, they will be bringing back the content and resources along with new posts when they launch!  One of the new posts is a guest blog I wrote about going through the job search and interview process as someone with a chronic illness and deciphering your benefits package – a piece I’m very excited for you to read!

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As they say on their website, “We all have stories that matter.”  This is one of the things I love most about GBM – they foster a community where we can feel comfortable sharing our stories and experiences with each other and educating those who have not yet heard of IBD.

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 it may have been “contaminated” throughout the day.  I also shower when I return home from work or other outings.  Because of this (and my health & fatigue), I am thankful for my work-from-home days and being able to stay at home most weekends, as it gives me a chance to rest and recover from the week.  As I’m sure is the case with many fellow spoonies on immune suppressants, anytime there’s signs of an infection, my doctor has me go to the hospital for a slew of tests, and I am unable to take my medication until I’m in the clear.  There have been cases where there was no infection, but I was still unable to take my medication while we waited for tests to come back.  Though I fully understand this, not taking my methotrexate definitely worsens my symptoms and pain.

Thankfully, my employer is incredibly understanding.  My supervisor is an amazing mentor and since she trusts me and my work, she has allowed me to work-from-home 2 days a week since my health has worsened this winter.  This self-care has been so helpful and conserving this energy has allowed me to increase the quality of my work.  She is also understanding when fellow employees are sick and allows me to work-from-home to protect myself.  Last winter, a colleague on my team was sick when she came back from the UAE.  My IBD specialist was very concerned and wrote a note that I should be working from home for 2 ½ weeks to protect myself from infection.  Though the note helped, my director was very understanding and respected this anyway.

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Earlier this week when I was remote, a co-worker I share an office with notified me that someone had been coughing near my desk, so I could take proper precautions when coming in the next day.  He also offered to wipe down my desk after the coughing and again before leaving for the day – which I totally took him up on!  With the flu and other winter colds circling around, I was nervous returning to the office the next day, but it was a necessity.  Another precaution I take is wearing my Vogmask, though I had only worn it once before in the office.  I typically used it for hospital trips, doctor’s office visits, and the occasional errand.  Because the next day was pay day and passing out checks is one of my responsibilities, I knew I would have to take this extra measure for my health and safety.  Though I was nervous of how team members might react or what they might say, I would much rather wear a mask than catch the flu that is going around this season.  I only encountered a handful of employees the previous time I wore it, and I received multiple questions and comments.  Because of this, I was a bit self-conscious going into the day, as I knew I would be interacting with all of our company’s employees.

Though I was nervous, I realized this was a moment I could embrace as a chronic illness advocate and use it as an opportunity to change the conversation.  For a long time, my immediate team and a few work friends were the only ones who knew of my health hurdles.  In the past 6 months, I’ve become more open and vocal about my story and experiences.  Along with my Vogmask, I put on my “Ask Me About My Colitis” shirt from the Great Bowel Movement, whipped my hair into a Katniss-esque braid, and prepared for my day.   Many people genuinely were concerned about my health – thinking I had caught the flu.  When asked about my mask, instead of being ashamed, I was able to educate people about IBD and other autoimmune diseases and how the medication I take weakens my immune system.  Everyone was extremely supportive, commented on the cute pattern, and some even said they are interested in getting a mask of their own with how bad the flu is this year.  It was a very pleasant surprise – I know that I work with such high-quality people and this experience confirmed it.

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I actually ended up not passing out checks, because though I had my mask, my team was still very concerned about me getting sick, and offered to do it for me.  I was also told that I could go home and work remotely for the afternoon and Friday because of how many people were sick in the office.

Overall, this was a great experience!  I pushed myself out of my comfort zone to advocate for the autoimmune community and I feel so proud.

 

**If you are interested in getting a Vogmask, “sickchicks” is a promo code for $10 off that is good through February.  I am not employed, sponsored, or affiliated with Vogmask.  This is just a tip I saw in a support group I’m in from someone else who is also not affiliated with Vogmask.  I just wanted to pass the savings along!