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 helpful at the time, I woke up in a lot of pain the following morning, so I haven’t felt terribly inspired to try it again.  I have also started to take baths most nights.  The hot water has helped to relieve some of the pain and combined with reading, it helps relax me and allow me to evade the ever persistent painsomnia.

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I have also started to work on puzzles more frequently.  Whether solo or with Alex, they are also a calming activity to use energy towards that helps me focus – especially in days of intense pain.  Since I am not working at the moment, I have been able to put those spoons towards other things – such as visiting with family or doing housework.  Chronic illness has really helped to put things into perspective for me.  I never thought there was going to be a day where folding laundry or emptying/loading the dishwasher would be exciting, but as a Spoonie, I see it as an achievement.

Sometimes, I am still having trouble balancing the number of spoons I use.  It’s not uncommon for me to be in the hospital the week leading up to my infusion.  Because I had energy, I pushed myself too hard the week before my infusion, and though I had fun, I definitely paid for it.  Dinner with former coworkers, dinner with my brother-in-law, his wonderful girlfriend, and her adorable dog, seeing my grandpa for the first time in over a year, hanging out with one of my best friends, and finishing the week with my Entyvio infusion and MTX shot made for a very lazy weekend. 😊  I worked on cross-stitch and dusted off my drawing skills for something my husband and I are working on.  Once I finished the book Big Little Lies, I began the series which is really good so far!  After some rest, I started the next week by having my friend and mentor over for dinner before she moves to start her new venture, which made for a really lovely night.  Later in the week, Alex and I went on a craft date to Joann Fabrics to get materials for a few different projects – he is seriously the perfect person for me!  Since 2+ hours walking around wore me out, I got to start the next day by catching up with one of my other best friends and watching The Bachelorette together over video chat.  She is someone who has always been by my side, and I love that we can still connect, even when we’re not as close location-wise as we once were.

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Medical updates within the past month haven’t been too vast.  I had my first appointment with my new primary doctor – who I learned was originally training to specialize in GI during his residency.  I also made an appointment with a new GI in my hospital system who my primary recommended.  The only other notable update is that once the insurance company processing my Short-Term Disability claim received my files, they decided to look at my records and evaluate my case for both Short-Term and Long-Term at the same time, because they recognize that my conditions – individually and combined – make for a complex case.  I was originally only going to file the LTD paperwork if I need it, but it is nice that I will likely know whether or not that would be approved prior to needing it.  They reached out to my employer for additional information and requested my medical records from both my current GI and my rheumatologist.  They have all of the information they need, and now I am just waiting to hear their decision!

I hope all my fellow spoonies are doing well!

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, a doctor’s office, and at home.  The total costs have ranged from $2,500.00, on the low end, to $22,000.00 – for the same drug, with the same premeds, being infused over the same period of time.  The price difference between the two hospitals was even shocking – a delta of $18,500.00.  Thankfully, many biologics and other drugs offer co-pay assistance plans, which have helped a great deal.

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The good news is that you can compare prices for procedures or medications at different facilities to keep from being surprised.  In my role as the benefit administrator for the company I work for, I learned of Healthcare Bluebook during this year’s open enrollment period.  A rep from one of the carriers I work with brought it to my attention.  It allows you to search in your area by either typing in a specific service or by selecting a category such as hospital, physician, imaging, labs, medications, etc.

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Once you search or select a service, the site will give you the low, fair, and high price for the area – 90210, in my example.  Depending on what your searching for, Healthcare Bluebook also offers prices for facilities in the area.

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This post is not endorsed by Healthcare Bluebook in any way, I just wanted to share this helpful resource with my fellow spoonies and warriors!  I hope this helps you navigate the health care system while saving some money in the process! 😊

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!

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?

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.

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).

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I was prednisone dependent for most of college – being thrown into a flare anytime I dipped below 15mg a day.  Once I began biologics, starting with Humira, I only needed prednisone during a flare.  I don’t know if it was because the length of time I was on steroids or due to other factors, but 3 years ago, prednisone stopped working for me.  I was no longer seeing any benefits or improvement from it – only the negative side effects.  Thankfully, my doctors have trusted me and my body, and I have not been prescribed it during a flare since then.

My moon face while on prednisone was one of my biggest insecurities.  Hearing strangers mention it was one thing, but comments (even the most well-meaning) coming from family and friends were definitely rough.  A few weeks before my final year of college began, I was in Resident Assistant/Housing training for the fourth time.  I wasn’t able to go to the camp outing that year due to a ulcerative colitis flare.  Though my GI at the time couldn’t get me in, one of the campus clinic doctors was very concerned and ended up giving me her cell phone number in case my condition worsened.  Though she couldn’t do much, she wanted to do what she could to help keep me out of the hospital.  When training resumed after camp, one of my fellow staff members exclaimed, “Oh! You weren’t at camp because you were getting your wisdom teeth out!”  This is my clearest roid rage memory.  In my head, I was screaming, “no, I didn’t get my wisdom teeth out, stupid!  It’s because I’m on fucking prednisone!”  Since she was a team member I liked, and I knew it would be inappropriate to scream at people during training, I responded by explaining that I had not and it was a side effect of one of my medicines.  Though I felt like the Hulk on prednisone (and the steroid-induced insomnia didn’t help), I had become quite skilled at hiding my rage and keeping up my Bruce Banner front.

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My first hospitalization during the four-month-long c. diff ordeal, there was a mix up with my steroids that ended with a lot more than moon face.  I was with my parents in northern Michigan at the time, so they called and consulted with my GI downstate – prior to the c. diff diagnosis. They had me on patient-controlled analgesia (morphine) that also gave me a small dose automatically at a regulated/scheduled rate.  Though it helped with horrible pain of the combination of c. diff and ulcerative colitis, it made me less cognizant of the care I was receiving.  It wasn’t until they were coming in to give me what they said was my “second-dose of steroids” that day that I began to be concerned.  My GI had said 30 mg of steroids, but the hospital heard it as 300mg and did not question it.  They were attempting to give 3 100mg doses throughout the day.  They insisted on giving me the 2nd dose as I was beginning to fight back.  I got my family involved.  I was telling the staff that my GI never prescribed more than 45mg, so I knew this wasn’t what he recommended.  They called my GI back and he was outraged.  I was so glad that I fought back and they finally listened, but it shouldn’t have taken that much effort for them to realize they were administering much more medication than I should have been receiving.  Needless to say, I blew up like a balloon.  Think Violet Beauregard.  My fingers were slowly turning into Aunt Marge’s from Harry Potter, and they hurt so badly they needed to be iced.  Thankfully, the swelling didn’t last long, and I went back to normal prednisone moon face, but that is not an experience I would ever want to repeat.

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A few months after my c. diff was cleared, my primary doctor ordered a bone density scan, which showed signs of early osteoporosis.  That obviously wasn’t just from this event, but also from the years during which I was steroid dependent.  Steroids definitely have their benefits in reducing inflammation, but they do have many negatives as well.  Though prednisone once provided me relief, I am personally glad that I no longer tolerate them.  Each patient needs to weigh the pros and cons in their specific case and make their own decision from there.  Moon faces, unite!

Caring for a Spoonie

As many of you know, Lauren normally writes a post every Tuesday, however this week has been rough.  Because of this, I offered to help and write something for her – creating Alex’s Caregiver Corner, where I will be contributing semi-regular posts. Today’s post is about caring for a spoonie and the adventures (or misadventures) that that can bring. Life with a spoonie is always interesting, as it is hard to predict what will come day-to-day and you must be flexible and understanding.

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Day-to-day life for spoonies, and those that care about them, is an adventure all its own. I do not know what to expect when I wake up every morning. Will today be a bad pain day? Will Lauren have the energy to get out of bed? What will she be able to eat today? These are all questions that go through my head every morning. I try hard to get a routine and make sure I am prepared for anything that comes up. During the week, I will wake up early to take care of the dogs, prepare breakfast, and get everything ready for our days. I work hard to make sure Lauren gets to rest and recover as many spoons as possible for the day. On the weekend, I make sure she can sleep in as late as possible and gets as much rest as possible. I will handle much of the house work, so she can use her spoons on something fun that she enjoys.

When caring for a spoonie, you may find yourself taking on everything out of love. You want to do the best you can to make sure they do not need to worry about anything. This is a noble endeavor, but a futile mission. The fact is, you are one person and can only do so much. You have your own tasks to deal with like a job, yard work, or general house work. Make sure you take time for yourself, as well as care for the person you love. It is a balancing act that can be very challenging, I can say that I have not even found a perfect balance after 3 years. What I have learned is that you need to practice self-care both mentally and physically. Find things you love and make sure you find time for those, sleep in once in a while, spend what time you can with friends, and most importantly reach out for help when you need it. Also, make sure you enjoy the little things, when you can, with the person you love.

A spoonie’s life is not easy. They can miss out on a number of things because they are sick, too weak, or are in pain. It can be just as challenging for a significant other. You can get lost in a cycle of care and recovery that can engulf your life, if you are not careful. Take time to enjoy the small things with the person you love. Lauren and I enjoy baking together, coming up with new sewing projects, watching television shows, or going to a museum. Recently, Lauren and I enjoyed a wonderful day at The Henry Ford Museum where I wheeled her around and we talked about Disney movies while we learned about the animation process for Pixar. I could not imagine a better way to enjoy the day! The two of us needed the time together after a long winter avoiding the flu and colds.

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Meeting Dug & Russell on our honeymoon

My final advice to anyone who cares for and loves a spoonie is to be understanding. You cannot always see the pain or weakness, and you will not always know how to help, but you can be understanding and listen to them. They will tell you what they need and need to know that they can trust you to believe them. Spoonies can be ignored and dismissed by so many, so what they need most from you is your support and understanding. When they are too weak to get out of bed, help them by making breakfast. If they say that they are in pain, they really are in pain. If they tell you that they need to go to the hospital, get your butt in the car and drive them. Most of all, when everyone around them dismisses their pain and symptoms, even doctors, listen to what they are telling you and fight for them. You are their rock and support, the person they rely on to help with day-to-day tasks, and the person who is there when doctors give up.

Caring for a spoonie can be challenging, but it is a labor of love. Lauren is the most important person in my life and caring for and helping her every day is done because I love her more than anything. Even through the all of her illnesses and the days she cannot get out of bed, we still enjoy every second together and share everything. Every day is full of love and laughter. I know on my worst of days, she can make me smile and when she is in terrible pain, I know I can make her laugh and at least make her happier. When we fall for a spoonie, we know what we are getting into, and everything we do is because we love and care about them. They are the most important people to us and need our full support, care, and understanding.

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Paradise Falls at The Science of Pixar Exhibit