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. 😊

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, her lack of spoon has got me thinking about other ways to help.

My first post covered dating a spoonie, this post will cover caring for a spoonie.  Spoonies are, in my opinion, some of the strongest people around.  Lauren has a strength that astonishes me at all times.  How she manages to do all she does through the day, dealing with all of the issues, all of the chronic pain, and the constant lack of energy.  I honestly could not be more amazed by her strength.  That being said, even the strongest spoonie needs the support of friends and family.

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If you are caring for a spoonie, I strongly recommend open communication.  Make sure they know you want to help and that you care.  Lauren and I talk often about how she is feeling and what she needs.  We also have many conversations about what is important for our family.  It is important to determine what you and your spoonie need.  For Lauren and me, the most important thing is for her to use her spoons on work first and then use the rest on things that make her happy.  Though we could manage without her working, she really enjoys the people she works with and the company she works for.  Without her working, things would also be tight, and though my job offers good healthcare plans, they are not as good as our plan through as her job.  I can take on all of the house work, cooking, cleaning, the dogs, really anything outside of work.

I take on all of these tasks because I care about her.  She means the world to me and I can see as she uses each spoon.  I know I cannot make her pain go away, but I make sure she knows that I am here to help.  That is the second thing about taking care of a spoonie, make sure they know you are there for them.  It can be hard for spoonies to ask for help, they want to keep their independence, and they can feel like a burden if they are not able to help.  It is important for them to know that you are there to support them.  Lauren loves to do things on her own without asking for help.  For example, I ordered the dog’s food the other day and it arrived in the mail today.  Rather than waiting until I got home to carry it in, she picked up a 25 lb box and carried it to the garage.  I know she is capable of doing these things, but I also know that every time she does this, she uses multiple spoons that she does not always have.  As someone who cares for her a great deal, it is hard to watch her use spoons on something I can do.

Finally, make sure you take care of yourself.  As the caregiver for a spoonie, it is easy to forget this important part.  You can feel like you have unlimited spoons and can do anything.  In reality, there is only so much time in the day and only so much can be accomplished each day.  This is something that took me a while to accept.  I wanted to help and do everything for Lauren.  I would take on more and more things, trying to get it all done.  I have come to realize that I need to prioritize the important things and plan out my nights and weekends, making sure to take care of myself, which allows me the ability to continue to care for Lauren.

Caring for a spoonie can be tough, but when you are madly in love with them it is totally worth it.   Love makes you do crazy things and gives you strength to take on things you never realized you could do.  What recommendations do you have for caring for your spoonie?

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!

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 raised hundreds of thousands of dollars to help him and his family cover medical costs.  Because of these neighbors, he was able to travel around the United States and get the care he needed to help beat cancer.  Mark wanted to give the same opportunity to others going through catastrophic life events.  In 2015, as a cancer survivor, he established the Fund A Life Foundation to support this effort.  They do constant fundraising so funds can always be available for those in need, instead of fundraising on an as needed basis.  As of now, Fund A Life focuses on the Michigan community, but has a vision to expand their outreach across the country.

Another one of our coworkers in no stranger to chronic illnesses.  His amazing wife has been battling multiple heath issues for years, only recently getting a diagnosis – Long QT Syndrome.  Many of her treatments aren’t covered by insurance, so hospital bills have been piling up.  She is one of the most giving, caring people I’ve crossed paths with – even when enduring tough times of her own.  She has helped family members get the proper resources when overcoming addiction and has saved dogs from abusive homes.  She has also volunteered her time to create a fundraising event for SADS (Sudden Arrhythmia Death Syndromes), a wonderful resource for people with heart disorders.

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Once Fund A Life became aware of their story, the began putting the plan in place to help and set up a surprise reveal of their grant approval.  I was brought into the surprise-planning process to help ensure he would be in the office.  I scheduled a fake meeting so he would be in our HR office – a more secluded area.  A few moments after he arrived, Mark walked into our office with a Publisher’s Clearing House sized check.  The recipient was truly surprised and very grateful.  He shared an update of their most recent medical battles and that his wife has been feeling anxious about the bills they owe.  I am also grateful to Fund A Life for providing an opportunity for this family to pay off medical bills and help in the recovery process.  It was a very special moment that I feel honored to witness.  Our company’s motion graphics team also caught the reveal and is putting together a video for the Fund A Life website, so you can share in witnessing the moment once the video is posted.

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I have reached out to Mark, because Fund A Life is a foundation which I would love to be involved.  If this non-profit could help you in your health journey or it’s a cause you want to help with, follow this link to learn more:  http://www.fundalife.org.