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!

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!