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.

I had an appointment with my rheumatologist – that Alex came with me to – where we went over my current symptoms and pain levels/locations.  My doctor increased my Cymbalta dose by 20mgs and agreed to fill out my paperwork, and I agreed to go on a walk every day – which I’ve done each day except for today.  The end of last week was filled with calls with my gastroenterologist’s office.  He had just come back from vacation, and the completion of the paperwork was taking longer than I was originally told to anticipate.  The calls back and forth were definitely causing me some stress, which lead to some retail therapy at Target where I added to my personal library collection, picked up a pair of comfortable shoes for the aforementioned walks, and strawberry blonde hair dye because I needed a change.

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On Friday, I made two appointments with specialists at Cleveland Clinic – an IBD specialist and one of the rheumatologists who run the clinic’s Fibromyalgia Management program.  The appointments are both later in the summer, but I am excited to meet with both of these doctors and see what other treatment options or plans are available to increase my quality of life.  I had a few extra spoons that day, so I decided it would be a good chance to dye my hair.  Though I love the color, I unfortunately misjudged my spoon count, and I was down for the rest of the night and into Saturday.

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Throughout the weekend, Alex and I watched both Grey’s Anatomy and Stranger Things while playing Stranger Things Monopoly (another item from my Target shopping spree).  I’ve also started reading Big Little Lies by Liane Moriarty and continued working on the jigsaw puzzle I was doing, in between naps with my pups.

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Come Monday, my paperwork from my GI was finally ready to be picked up, so I ran that over to work and faxed the Short-Term Disability paperwork over to the carrier.  Between being the benefits admin at the company I work for and being the first to go through the process from the employee side, I want to write a piece on FMLA and Short-Term Disability once I have completed the approval process with the insurance company.  (For now, they have all of the information they need from me.  They will review it and reach out to notify me that I’ve been approved, denied, or that they need additional information.)

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Other than the things mentioned above, I’ve been just trying to get as much rest as possible.  In “week two”, I want to start helping out around the house more or generally trying to be more active.  Not more active than when I was working, because that would not do me any good, but more active than I have been this week.  I do think it was important to take this first week to get a lot of rest, but I want to try and find the balance in this.

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. 😊

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 not, a “spoonie” is someone who deals with chronic illness and/or fatigue caused by various illnesses. My wife has ulcerative colitis, fibromylgia, rheumatoid arthritis, and other chronic conditions. These conditions drain her energy and make it hard to get through the day. Those with chronic illness and fatigue tend to use The Spoon Theory to explain their daily struggles.

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The Spoon Theory was created by Christine Miserandino and can be read at https://butyoudontlooksick.com/category/the-spoon-theory/. The basic idea behind The Spoon Theory is that people with chronic conditions only have a limited number of spoons to use in a day. Most healthy people have an unlimited number of spoons to use through out the day, however those with chronic conditions do not have that luxury. The limited number of spoons means that they have to conserve and use their spoons wisely. Everything takes spoons, though some activities take more spoons than others. A good example is getting up for the day. For a healthy person, getting up just means they have to hop out of bed and get ready. For a spoonie, each task takes spoons. Getting out of bed might take one spoon and walking to the bathroom takes another. Do you wash your face in the morning? Well that will take a spoon as well. If you have long hair and need to comb it, then it might take two spoons. Each task, even the simplest, takes spoons.

A spoonie only has a limited number of these spoons throughout the day, and unlike healthy people, spoonies do not recover spoons as the day goes on. If they wake up with only 10 spoons, that is all they have for that day. They may be able to borrow spoons from tomorrow, but that means they will start tomorrow off with fewer spoons. In addition to the limited spoons, their chronic conditions can steal spoons. Lauren might start with 10 spoons, but just dealing with the pain will use 3 spoons for the day. Putting on a happy face and using energy to pass as abled also takes spoons to accomplish. With any luck she will recover some when she sleeps, but even that is not guaranteed.

The Spoon Theory is probably the best way I have ever found to explain the struggles people with chronic illness deal with every day in regards to energy. The idea that once your spoons are gone, then your day is done is scary. I have finally gotten to the point where I can see the spoons being expended, and I know when Lauren is out of spoons, but it took a lot of communication between the two of us to get to this point. This is why spoonies need extra support and understanding. They work hard every day just to get the basics done. If you are caring for a spoonie, read The Spoon Theory and have a conversation with them about their spoons. Pitch in when you care, and take over anything that is not important for them to do. They are dealing with so much already, and they need your support!

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 to get worse as I age.

For me, my brainfog is always at its worst when I’m in pain and/or in a flare.  It’s feels like my brain and body only has so much capacity, that everything else becomes a blur.  Typically, pain will lead to painsomnia, which just makes the fog heavier the next day.  Thankfully, I have developed a few coping methods to help me on days where I’m extra foggy.

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Staring out into the fog that fills my brain

Notes, notes, notes!  I take notes everywhere, all the time.  To-do lists keep me on track – I keep my work one on my computer and my personal and blog ones on my phone.  Anytime something pops into my head, I will try to jot it down as soon as I can before it gets lost in the abyss.  If I think of something important that’s work related, I’ll email myself notes.  At work, I have also started asking people to email me if they request something of me in person and I can’t make note of it at the time.  I also take audio recordings during some meetings – especially with fast talkers, as long as it’s okay with them.  I’ve found it also helps to explain fog to family, friends, and coworkers to help them understand.  My husband does what he can to keep me on track when I forget what I’m saying.  Thankfully, with a reminder of what I was talking about, I can usually pick up where I was in the story or conversation.  It gets dangerous when I have thoughts I haven’t yet started to get out, because then no one is there to remind me!

Though the fog can be frustrating, there are ways to help remember, even if you can’t clear the fog.  I hope these tips are as helpful to you as they are to me.