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.

IMG_3501

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.

IMG_3503

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!

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.

IMG_2224

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.

IMG_2225

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.

IMG_2402

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.

IMG_2258
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.

March Awareness Month

March is the month of awareness for endometriosis, autoimmune diseases, and colorectal cancer.  I’ve written and rewritten this post in the notes on my phone a few times.  All three of these things are very important to me, so I wanted to make sure I got it right.  I am affected by two of them, and the other is something for which I am at a higher risk.  Between my flare this month and a little, good old-fashion procrastination, I unfortunately missed the deadline I set of completing this post in March.  I hope this post can still help explain why awareness is still important – even in April!

Ever since a young age, I have had horrible abdominal pain since I was pre-menarche and equally bad cramps and heavy periods since.  During a hospital stay for my ulcerative colitis, they found what looked like a cyst on my left ovary during a CT scan and scheduled a pelvic ultrasound to get a better look.  It was discovered that I had not only a cystic ovary, but what looked to be endometriosis.  There isn’t nearly enough research done on endometriosis and there is so much more that needs to be discovered.  My gynecologist and I decided surgery for both would be the best option.  Unfortunately, my surgery needed to be rescheduled twice due to ulcerative colitis flares.  Finally, on Christmas break of my final year in college we were all set to remove the cyst and any endometriosis that we could.  The game plan was to try and save the ovary and just remove the cyst, only to learn that the entire mass was a cystic.  My gynecologist wondered if there ever was truly and ovary or just a cyst.  She also found that the endometriosis was binding part of my colon to my uterus, but was able to laser the endometriosis off.  It was a laparoscopy surgery done with the da Vinci machine, so though I have five scars, they are all small and three have faded well.  Since surgery, I’ve had far less cramping and pain due to endometriosis, and I haven’t had a notable reoccurrence.

IMG_2207
My oophorectomy scars 4 years after surgery

Autoimmune disease is also something that is very important to me, and thus, so is spreading awareness.  I personally am diagnosed with Inflammatory Bowel Disease, Endometriosis, Celiac disease, and had drug-induced Lupus from Remicade treatments, but believe that spreading awareness for all autoimmune diseases is important.  Though there are studies done, there is so much more that is still unknown with autoimmune diseases.  Many people need to see multiple specialists before being diagnosed or set up with a treatment plan right for them.  Awareness leads to the spread of knowledge and drive for research funding which leads to better treatment options and hopefully – one day – cures.  American Autoimmune Related Disease Association is a national non-profit that is focused on research, advocacy, and providing patient resources for all autoimmune diseases (and is actually located local to me in Michigan!)  They have great resources on diagnosis tips and having conversations with your doctor(s), as well as studies on the connection between women & autoimmunity.  Great discoveries are fueled by funding and knowledge gained from advocacy and awareness of autoimmune diseases, so speak up and tell your story!

IMG_2226
Baby Lauren deep in autoimmune research

March is also national colorectal cancer awareness month.  Though most IBD patients won’t develop colorectal cancer, the risks are higher for us than those without IBD.  It is recommended that people with Crohn’s disease or ulcerative colitis receive a screening colonoscopy once they’ve had the disease for eight to ten years – especially if there is a family history of colorectal cancer.  My maternal great-grandma died of colon cancer when I was young, so I am extra diligent and so is my GI team.  I had my first cancer screening colonoscopy in January of this year, and sixteen biopsies were taken, including the removal of one polyp.  I am happy to report that I am in the clear!  These screenings are very important, especially as someone with IBD, and colorectal cancer is treatable when found early.

All three of these diseases are near and dear to my heart, as they affect myself and those I care about.  Even though it’s April, it’s never too late to keep spreading awareness of our stories!

#IBDAdvocacyTag

Megan from The Front Butt Youtuber channel started the #IBDAdvocacyTag, so this week I am answering her five questions to help spread awareness & challenge you to answer them too!

What form of IBD do you have?

I have ulcerative colitis – specifically ulcerative pancolitis, meaning my entire colon is affected by the disease.

Why is IBD advocacy important?

IBD advocacy is important in helping to educate others to bring a better understanding.  A great example is with my team at work.  Though my colleagues were supportive off the bat, the more I tell them about IBD, my other diseases, and how the conditions affect me specifically, the more supportive they are.  The more awareness we can provide about IBD, the more understanding people can be.

Awareness and advocacy also can bring advancements in treatments and eventually a cure.  The medicine I am currently on for my ulcerative colitis was not available when I was first diagnosed.  Everyone’s disease is unique to them and the medication that could help someone else could still be in trials or not even thought of yet!  The more IBD patients speak out and participate in studies, the more research will be done leading to better treatments and the closer we will be to a cure.

Describe a socially awkward moment with IBD.

The first story that comes to mind occurred when I was working as a manager at a restaurant on my first shift after being hospitalized.  The General Manager of the restaurant and I were standing at the “seating chart” podium while guests were standing and sitting in the lobby waiting for tables to open up.  Loudly, he begins to ask me about my “irritable” bowel disease and how my “irritable” bowels were.  Super weird conversation since I wasn’t that comfortable with him, only made weirder by the ten other strangers in the lobby.  This was earlier in my disease when I wasn’t as comfortable discussing it as I am now, so I awkwardly let him know that the “I” stands for “inflammatory” and just kind of shrank in size and stature, not saying anything else.  Not my proudest advocacy moment, but it does lead into the next question…

What is a common stigma you run into?

The most common thing I run into is people thinking IBD is the same thing as IBS.  I’ve had people who have/had IBS tell me that theirs improved by eating better and managing stress, and I would be cured if I did that.  Though there can be food triggers or foods to avoid and stress doesn’t do anyone any favors, IBD is so much more than that.  As an autoimmune disease, IBD is our bodies attacking their own (what was at one time) healthy tissue.  When I encounter this misconception, I take the time to explain the differences and share my IBD story.

What do you want other people to know about IBD?

As I said earlier, everyone’s disease is unique and it affects people in different ways.  A treatment that worked for one person might not work for another.  There are different factors that go into everyone’s IBD symptoms and it is not fair to hold everyone to a single standard of what it looks like to have IBD.

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 it doesn’t reduce my pain, soft, smooth, flowing fabrics help reduce any additional pain.  Two of my favorite shirts are cotton/polyester blends that have been worn and softened through washes for years.   When it’s colder, flannel button-up shirts are another go-to of mine.  Especially with my powerport, button-up shirts are one of my go-tos for infusions and long hospital stays – definitely more comfortable than a hospital gown and it still allows people to my port site.  I also wear a Christmas sweater (around the house) all year round because it’s so comfortable!

IMG_1652

Though not flowing, I have also found a pair of soft leggings that have good coverage that I love.  When I moved to my current company a few years ago, I took advantage of their casual dress-code and bought 6 additional pairs – so I could wear them all week.  If I’m not at home in my sweatpants, I am wearing leggings with a soft shirt and a sweater.  Though I still have a few pairs of jeans, I prefer not to wear them because my skin has been much more sensitive to rough fabrics.  Ever since I began showing fibromyalgia symptoms, my skin hurts when wearing rough fabrics – even with my sweatpants when it gets really bad.  The stretch of leggings is also more forgiving and as comfortable as possible when I’m distended.

What is your favorite thing to wear on bad pain days?  Why does it help you?

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.

IMG_1468

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.

IMG_1470

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!