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!

Wedding Planning with Chronic Illness

One of the first things my now-husband and I did once engaged (after telling our families) was pick a date.  Since I’m on Entyvio, which typically has an eight-week infusion cycle, and we knew we wanted a fall wedding, we picked a few dates that would be in the middle of my infusion schedule.  We chose this because my immune system would be stronger than immediately following an infusion, and if I were to pick up germs from either wedding guests or our honeymoon at Walt Disney World, I would have time to recover before my next infusion.  Thankfully, the only thing I suffered from was additional fatigue, which I would take over catching a cold.

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Painted initials

My husband proposed a week before I started with my current company.  Since my previous company did not take me up on my two weeks, I had one week to plan as much as possible before beginning my new job.  Our wedding was going to be in my uncle’s backyard right on Lake Michigan.  Between this and our theme being Pixar’s Up, we had many DIY elements to our wedding.  I enjoyed this aspect quite a bit, because I love crafting and it is one of my stress relievers.  While you’re in the planning process, pace yourself, practice self-care, and lean on your fiancé and family/friends/support system.  Some of my wedding party helped with crafts and my wedding shower favors.  My husband also helped with much of this.  We made our own mailbox, adventure book, Paradise Falls jug, compass escort cards, painted initials, and other items.  If crafts aren’t your thing or stress you out, don’t go this route and find something else that is relaxing and cathartic to include in your wedding planning process.

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Clay “Carl & Ellie” chair cake toppers

We were planning our wedding while living 4 hours away from our venue and any potential vendors.  If you are planning a destination wedding, I would highly recommend planning a trip to meet with your vendors before the wedding, if possible.  We had a short engagement, so we only traveled once to meet with our vendors before traveling for our wedding.  Luckily, my parents and other family live in the town we were being married in, which helped.  We were able to much of the vetting with the vendors via phone and email prior to our visit and narrow down who we wanted to book.  Our trip to my parents included a tasting with our baker, one with our caterer (who did a full plated meal of each appetizers and dinner for both my parents, my fiancé, and I), had an engagement shoot with our photographer, and a quick consultation with our florist.  Though it was a busy weekend (that included me forgetting my purse that had my meds for the week at our baker’s kitchen an hour and a half away), it also made a lot of the other planning easier.

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Original Venue

Though we planned quite a bit, and may have over planned, we still did not have a plan C.  I had created binders with multiple checklists, an alphabetic list of guests to help organize the escort cards, pictures my bridesmaids had chosen as hairstyle inspiration, and sketches of where each table should go and each item on each table should go.  As I said, I thought I was overprepared.  Since we were having an outdoor wedding, our plan B was to use my parent’s event tent in the chance they called for rain.  Instead, the forecast was calling for 100% thunderstorms all day.  Thunder and lightning under a tent on the beach did not sound like the safest plan, so we ended up taking the Wednesday before our wedding off work to call different venues and locations to find something.  Anything.  At this point, we were even considering the library, VFW hall, or the old middle school gym – as long as it was indoors and could fit us and our 60 guests.  Luckily, an event barn only 8 miles from our original location had a cancellation and was open all weekend.  On our drive up north, I called all of our vendors to let them know of our change in venue.  Our caterer drove out the day before our wedding to scout the new venue for setting up.

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Actual Venue

We were able to use the barn on Friday for our rehearsal, rehearsal dinner, and to set up most of the wedding decorations with our families and wedding party.  They also gave us access to a condo on the connected golf course to get ready the following day.  During set up, my husband and bridesmaids created a strict rule that I was not allowed to decorate and risk over-exerting myself while setting up.  Though it was hard not to help execute the plans I had created, with how much pain I was in, I appreciated it.  I was feeling so poorly that had it not been the weekend of my wedding, I would have gone to the hospital.  The stress of final wedding items and finding a new venue last minute didn’t help.  My fiancé set up a chair for me in the middle of the venue where I could instruct others in decorating by referencing the diagrams I had drawn.  With the venue change, these diagrams and other items I had included in the binder helped smooth the transition, as they translated well to the new venue and helped make sure we didn’t forget anything.  We loved our new venue, everything went amazingly, and we were very happy with the change.  Learn from me and have some plans and ideas in place in case of emergency.

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The biggest tips I have for day of is having your support system protect you from stressors, wear comfortable shoes, rest when you can, and make sure you eat!  There were a few minor things that happened on our wedding day in final set up with the venue that were kept from me until after they had been resolved, and I am so thankful for that.  My Maid-of-Honor’s boyfriend drove about 20 minutes to the nearest Joann Fabrics to get a new frame and also helped resolve other issues.  Not needing to stress about a problem that would be resolved was lovely.  If you have people who can act like buffer, it will help ease your stress on your big day.  Making sure you’re comfortable is also very important, especially if you suffer from chronic pain.  I wore flats with my dress and broke them in with thick socks around the house before the wedding.  I didn’t even notice my shoes because they were so comfy!

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Make sure wherever you’re getting ready has plenty of places to sit and rest and have anything you may need both for your health and for the wedding.  During pictures and before the ceremony, I sat as much as I could and took the opportunity to conserve energy.  During the reception, I took many breaks and tried to stay as well hydrated as possible.  In addition to staying hydrated, I did my best to eat throughout the day.  We were getting our hair done at the condo, and I was the first one to arrive to have my hair curled and pinned so it had time to set before styling.  I forgot to grab food and needed to be there at 7:30am, so the first bridesmaid to arrive brought me eggs from a local café.  Around noon, my mom and one of her best friends put together a cheese and fruit plater and brought gluten free pretzels and hummus for us to snack on throughout the afternoon.  Once we were dressed and ready, we did pictures with me and my side of the wedding party, the first look, pictures of my husband and his side of the wedding party, all of us, and then family.  After that, the whole wedding party went back to the condo to relax during the guests’ cocktail party before the ceremony.  Our caterer made a special tray with a variety of the hors d’oeuvres and had one of the waiters deliver it to the condo for us.  We had decided to do the whole wedding gluten free, as we did not want to take the chance of me being glutened on our wedding day.  Our caterer was very understanding, took great safety precautions, and created a delicious menu.  We thankfully were able to eat our whole dinner and our cake without interruption during the reception.  Eating throughout the day definitely helped keep my energy up.

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Resting and eating pretzels

Lean on your fiancé and the rest of your support system during planning, prep, and the big day.  It’s your day, so don’t plan anything that you and your fiancé do not want or would stress you out on your wedding day.  Wear what makes you comfortable, rest, and make sure you eat and stay hydrated.  And most of all, enjoy this celebration with those you love!

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**Some of the photography is by Thomas Kachadurian**