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. 😊

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.

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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!

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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!

The Adventure of My Port & Me

February is my Portiversary month!  I have a single lumen power port that was placed two years ago.

Once upon a time, I had good veins that nurses were able to access.  After the many IVs started during my hospitalizations over the four months I had c diff and received multiple potassium infusions (which hurt like crazy) and other hospitalization for my ulcerative colitis, I became quite the hard stick.  The journey to getting my port began during my final loading dose of Entyvio.  On a Friday at the University of Michigan infusion center, five different nurses tried to start an IV a total of six times.  They brought out all of the tools in their arsenal and were still unable to get one started.  The infusion center was closing in less than hour, and I was told that I would need to reschedule my infusion.  Since I am not able to infuse during the week (except for Friday afternoons) due to the way Entyvio affects me, I was quite concerned at the idea of waiting until Monday for my infusion, and the effect it would have on the rest of the week.  Though this is not something that is typically done, one of the nurses was able to schedule my infusion for the next day in the hospital on the Thoracic Intensive Care Unit (TICU) floor in a small infusion room.  This floor had a dedicated IV nurse who thankfully was able to access me in one attempt – using a vein that had never been accessed on the back of my arm.

After my loading doses had finished, my infusions were moved to a center closer to my home.  During my first maintenance dose, there was similar trouble getting an IV started, but since there was more time, they were able to get one started after an hour or two.  Though we had thought about a picc line or a port after the U of M infusion, this is where the conversations truly began.  My favorite nurse at this center was working that day, and she sat down with us to discuss both options in more detail.  With my infusions being every 8 weeks, it was decided that a port was the better option, as it could be deaccessed between infusions.

I brought this up to my gastroenterologist, and he was in full support of a port and referring me to a surgeon – as long as there was evidence the Entyvio was working.  We scheduled a colonoscopy and my first upper endoscopy – as this GI thought I might have misdiagnosed crohn’s instead of ulcerative colitis.  During this scope, my colon looked the best it ever had since diagnosis!  Because of this, my GI’s office set up an appointment for me with their recommended surgeon.  The consolation went great and he made me very comfortable with the procedure.  He even gave me a port that I could look at to get an idea of what would be going into my body (Honestly, it made me think of a mouse! Haha).  He was able to get me on the schedule before my next infusion – which was great!

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The day of my surgery, I was quite anxious, and since they wouldn’t allow my now husband to come back to the pre-op area at first, my anxiety was heightened.  While in pre-op, I debated with my husband whether or not I wanted to do this surgery.  (Spoiler alert:  I am extremely glad he encouraged me to follow through.)  When starting my last peripheral IV, the nurse injected lidocaine in my arm but I could still feel her digging and having a rough time finding the vein.  They ended up giving me two doses of a calming/anti-anxiety medication through my IV, before the surgeon came in the room to talk to me.  After speaking with him, I agreed to move forward with the surgery.  He did say he would check back in with me before I was wheeled down to the operating room, and when he didn’t, I started having a panic attack as they were transporting me.  They ended up giving me a third dose right as I began talking to the doctor and then they pushed the anesthesia.  And then I woke up with a port!  It was not my finest hour nor my proudest moment, but I am so glad that I pushed through the anxiety because the end result has made my life so much less stressful, as well as reducing my anxiety when going to infusions and hospital trips.

During recovery, the site was painful for a bit, but that didn’t last long.  Most of the discomfort was due to the skin being stretched out over the port.  I wore loose tops for the first week or so as that helped lessen the discomfort.  I did ice the site many times throughout the day.  While I was healing, I did somehow pull one or two of my anchoring stitches (the silicone on the side of the port is used to anchor it in place), which wasn’t uncomfortable for long and the only lasting effect is that my port shifts a bit if it’s not being held steady while accessing.

My first infusion with the port – and every infusion after – went splendidly.  I used to always dread infusion days even though it made me feel better because I knew what an affair it would be to get my IV started.  For my first few infusions, I did use the Emla cream prescribed, though I haven’t used it since.  It helped make me more comfortable as I was getting used to the port, so I would definitely recommend it.  One of my nurses suggested covering the Emla cream/port site with the Press’n Seal cling film, which worked very well. If you have IBD and are talking with your doctor and/or a surgeon about getting a port, I would suggest asking it to be placed on your right side.  Mine is placed on my left, and though I was still able to use it, it made things a bit tricky at my colonoscopy last month, as patients need to lay on their left side for that procedure.

Port Accessed

Caring for the port is pretty simple.  Thankfully, since the port is under the skin, there is not much risk except when accessed.  I am able to shower, take baths, or swim without having to take special precautions.  Since my infusions are only every 8 weeks, I get my port flushed and locked with heparin every opposite month.  When I do have a fever or other signs of infection, I have to have blood cultures taken from both my port and a peripheral site to verify that there isn’t an infection in my port.

Whether you have a port, picc, or get regular IVs, you know your veins best.  Advocate for yourself, and when you’re getting a peripheral blood draw or IV, assert that nurses access only the veins you’re comfortable having accessed.  I often have nurses insist that they can get a vein that many nurses before them haven’t been able to successfully access.  I have reached a point where I now stand my ground and only allow them to draw blood or start an IV on select veins.  Thankfully, many nurses I have encountered have the mentality that I know my body best.  I still come upon the occasional nurse who fights back, but I ask for another nurse in those situations.  I really stand my ground because that’s what’s best for me and my body.