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!

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. 😊

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!

Slug blood

Now that we’re a couple of posts in, I thought it would be a good time to regale you with a tale of one of my many misadventures.  Since I’m on a biologic and methotrexate, my rheumatologist has instructed me to go to the Emergency Room for labs, blood cultures, a urine culture, and sometimes a chest x-ray any time I have a fever.

One day this past summer, I was feeling really dizzy and had a temperature of 102.5*F.  A doctor at my local ER ordered all the tests above as well as fluids.  Since I have a medical port (which I plan to discuss further in a later post), I have cultures taken from my port and a peripheral site.  The nurse cleaned both sites before collecting the samples.  They kept me overnight for precautionary IV antibiotics and discharged me the following day.  Blood cultures take about 5 days to receive results – at least in my hospital system.  During this time – and until I got a negative culture – I was not able to take my immune suppressants.  Because of this, my pain and other symptoms increased.

I received a call the following week letting me know my peripheral culture grew, but it could have been a contaminated sample.  They wanted me to return to the hospital to repeat both blood culture samples.  I was initially admitted, but I fought to be discharged as the culture wouldn’t be back for days and they did not have a care plan in place.

The results for the second culture were released during an appointment with my rheumatologist, so she gave me the news.  This time, the sample from my port is the one that grew.  The bacteria were found to be Moraxella osloensis – a mutualistic symbiont of a slug parasite.  Since this was way out of my doctor’s wheelhouse, she called one of her friends who is an infectious disease doctor while she was still in the room.  Neither could figure out how this bacterium was introduced into my central line and the other doctor wasn’t able to get me on her schedule until 7 days later.  There were concerns from all ends of what would happen if it were in my blood and if my port would need to be removed.  Back to the hospital I went…

During this trip, I had one of the best nurses I’ve ever had.  She was unbelievably understanding and wanted to make sure this was the final round of my blood culture battle.  She wiped down both areas multiple times to avoid any contamination.  She also used a pediatric blood culture set for my peripheral draw, as it wasn’t giving her much of a sample and she didn’t want to have to poke me again.  As I said, one of the best nurses I’ve had.  Thankfully both samples came back negative for any growth, and I was in the clear to begin taking my medication again!

Being off of my meds for about 20 days was very difficult, as I’m sure you can imagine.  When getting cultures since, I always make sure they wipe down the area thoroughly twice to avoid a repeat of this situation, and so far, it’s worked! (Fingers crossed!!)  Please learn from this, and never be afraid to speak up.  You’re your own best advocate!

And still no answer to the slug-killing-bacteria contaminated sample…

A little bit about me

Hello! My name is Lauren, and I want to welcome to The Misadventures of a Spoonie!

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My rheumatologist always says that my body didn’t read the handbook and doesn’t follow any rules.  With many of my conditions not presenting themselves as “textbook”, I have encountered many hiccups in the healthcare system along the way.  Between these tales and my experience as a benefits administrator, I hope I can help others navigate their way through health care and life with chronic illness.

Personally, I have ulcerative colitis, endometriosis, ovarian cyst (removed), thyroid cysts, arthritis, and additional undiagnosed issues.  While on Remicade, I also began having drug-induced lupus symptoms, which have since stopped.

I am so thankful for my wonderful support system of my husband and our two cuddle-bug puppies.  There are two reasons The Spoon Theory means so much to me: 1) It helped me realize that it’s okay to ask for help instead of borrowing spoons, and 2) it helped my husband further understand what I’m going through.  He is a very logical person and the quantitative approach helped him comprehend my energy levels and symptoms beyond his initial understanding.  He always checks-in on my spoons and helps support on tasks that really wear me out.  When tasks do wear me down, I can always count on our pups to stay by my side when I’m stuck in bed.

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Thank you for checking out my blog!  I look forward to sharing my experiences with you!