Sick of biting my tongue . . .

I think I’m an amazing actress! For the past month I have been bleeding everyday, severe bloating often, severe fatigue, and insomnia but somehow I am able to commute and work 40 hours a week, all with a smile on my face.  I should win an Oscar because I don’t believe the average person can do that. I’m surprised no one at the new job has asked if I’m okay, but I guess I use all the energy I have during the work day and pass out when I get home on my bad days.

I am no longer afraid of Humira, I now look forward to it! Anything to make me feel better. Trying to clean my room for the past month has been a struggle, the last time it was this messy was right before I was admitted. I just don’t have the energy. The other day I had to lay down after taking a shower, and last night I woke up around 3am still in my work clothes and laptop in my lap. Unfortunately, this is becoming a regular thing, I’m so exhausted.

I finally spoke with my Humira Ambassador, she seems really nice and helpful and sent me my Humira welcome package. When speaking with her she mentioned that I have Crohn’s Disease . . . I immediately corrected her and said, no I have UC . . . she responded by saying on the application my GI’s office submitted, they wrote down Crohn’s. I immediately rolled my eyes and barely paid attention to the rest of the conversation because I was slowly becoming frustrated. When I saw my GI briefly last month, he did mention crohn’s but i assumed he misspoke and confused me with another patient, I guess not. I sent an email to my GI’s office asking what is my diagnosis among other things, OF COURSE the PA responded and stated, I quote, “I​ ​completed​ ​your​ ​paper​ ​work​ ​with​ ​Dr.​ ​F.​ ​He​ ​felt​ ​your​ ​Colitis​ ​was​ ​more​ ​of​ ​a​ ​Crohn’s….”  What the hell does that mean?!?!? I mean let’s continue to play this game of what illness does Krystal have today! I would appreciate it if he would say, your diagnosis cannot be determined  at this time, but you have active IBD, I would respect him more for that. So out of frustration I responded back with the below message, a bit stern but I felt like it needed to be said.  And when probation ends at the new job, my first request for leave will be to see a new GI.

​I​ ​find​ ​it​ ​very​ ​surprising​ ​that​ ​Dr.​ ​F​ ​all​ ​of​ ​a​ ​sudden​ ​believes​ ​I​ ​have​ ​crohn’s​ ​disease,​ ​I​ ​think​ ​he​ ​might​ ​have​ ​me​ ​confused​ ​with​ ​another​ ​patient,​ ​which​ ​is​ ​definitely​ ​possible​ ​since​ ​prior​ ​to​ ​August​ ​31​ ​I​ ​have​ ​not​ ​seen​ ​him​ ​since​ ​I​ ​was​ ​discharged.​ ​​ ​In​ ​the​ ​hospital​ ​Dr.​ ​H ​stated​ ​that​ ​I​ ​have​ ​crohn’s,​ ​but​ ​Dr.​ ​F was​ ​quick​ ​to​ ​disagree.​ ​I​ ​guess​ ​I​ ​don’t​ ​understand​ ​how​ ​my​ ​diagnosis​ ​changes​ ​within​ ​months​ ​without​ ​any​ ​additional​ ​procedures​ ​since​ ​my​ ​stay​ ​in​ ​the​ ​hospital​ ​this​ ​past​ ​April.​ ​I​ ​understand​ ​that​ ​at​ ​this​ ​stage​ ​the​ ​treatment​ ​is​ ​probably​ ​the​ ​same​ ​for​ ​both​ ​conditions,​ ​but​ ​it​ ​is​ ​important​ ​for​ ​me​ ​to​ ​know​ ​what​ ​I​ ​have,​ ​or​ ​if​ ​Dr.​ ​F​ ​does​ ​not​ ​know,​ ​just​ ​tell​ ​me​ ​i’m​ ​undiagnosed​ ​with​ ​active​ ​IBD.​ ​​ ​I​ ​don’t​ ​like​ ​the​ ​idea​ ​of​ ​my​ ​GI​ ​guessing​ ​what​ ​I​ ​have,​ ​or​ ​changing​ ​my​ ​diagnosis​ ​every​ ​few​ ​months​ ​just​ ​because.​ ​I​ ​know​ ​my​ ​case​ ​is​ ​considered​ ​mild​ ​(is​ ​that​ ​still​ ​true?),​ ​but​ ​I​ ​have​ ​never​ ​had​ ​to​ ​take​ ​10​ ​pills​ ​a​ ​day​ ​or​ ​be​ ​admitted​ ​to​ a ​hospital​ ​ever​ ​before.​ ​​ ​My​ ​life​ ​has​ ​completely​ ​changed​ ​in​ ​the​ ​past​ ​9​ ​months​ ​and​ ​it​ ​would​ ​be​ ​nice​ ​if​ ​I​ ​didn’t​ ​feel​ ​like​ ​I’m​ ​the​ ​only​ ​one​ ​taking​ ​my​ ​illness​ ​seriously.

Working with an IBD . . . .

I took a sick day and I’m grateful to say I do not regret it. We accumulate sick leave/ PTO for a reason. But unfortunately, when you have an IBD your sick days can add up, which will eventually worry me. Thankfully, I have a very understanding boss, which I’ve learned is very rare.

I posted a question in a crohn’s/colitis support group on Facebook aimed towards young professionals, asking do you fear your disease can impact your professional life? Should you bring up your disease at your job? Would you ever leave a job even if you had a very understanding boss? The responses were mixed and I noticed the older you are the more pessimistic. “No, I would never leave because finding an understanding boss is very rare”.  Some even stated, “bringing up your condition or leaving is  just stupid”. The younger people that responded were totally different (millennials! smh), they stated you should not allow your disease to hold you back or impede your professional growth. “If the job is not flexible,then it’s not the right job.”  The one thing that both sides agreed on is that you never mention your disease firsthand, because it’s a big possibility that you will be discriminated against, and I totally agree.

In my situation, I had been in my position for over a year before I became sick. So  my manager knew about my many doctor appointments because she approved my leave and when I finally got a diagnosis of course she was curious. At first I was afraid to tell, but I’m glad I eventually did.  Since I’ve been really sick lately, I don’t know how I could have kept it a secret. My situation is rare, and I’m very grateful for the support I have, but there are resources out there if you do not have support, you do have rights.

In the US you might be able to file for disability. According to the CCFA.org you may be able to apply for social security benefits if your condition is found in the list of disabling impairments, the CCFA pointed out 3 conditions where IBD would fit:

  1. Disorders of the Digestive System
  2. Malnutrition or Weight Loss
  3. Surgical Diversion of the Intestinal Tract

Read more at this link:  http://www.ccfa.org/resources/applying-for-social-security.html

CCFA also has an employee accommodation letter template that ask for office placement located near a bathroom; allowed to start work an hour later each day; and other accommodations. Letter may be given to healthcare provider to complete and provide specific needs for the employee. Letter is then provided to the patient’s employer.

Review the accommodation letter here: http://www.ccfa.org/resources/employment-accommodation.html

The CCFA also provides a summary of disability laws and even job search engines for persons with disabilities, CCFA is freaking awesome lol Check out the info here: http://www.ccfa.org/assets/pdfs/employment-and-inflammatory.pdf

Kudos to Dr. Phil :) . . .

I really believe there is little awareness in mainstream media about Inflammatory Bowel Disease (IBD), so when I see a clip about IBD on TV, I get excited!

Kudos to the Dr. Phil show for spreading awareness about IBD!

Please watch below and share with your family and friends. It’s a great video about what is IBD.

You gotta laugh :) – Superbowl AD . . .

I’m pretty sure you  guys saw the Doritos commercial where the guy is preventing people from sitting next to him on the plane.  I thought it was hilarious, and what stood out for me was when he was reading a book titled “How to manage Chronic IBS” Of course I bust out laughing and told my friend, “Oh that’s going on my blog!” 🙂 Then I thought would IBD be considered chronic IBS? But If the book was titled “How to manage IBD ?”, no one would have found it funny because no one knows what an IBD is, which is not surprising because I didn’t know until  I was diagnosed. I didn’t even know that there were Chron’s and Colitis walks to raise money to find a cure, or that a purple ribbon was the symbol for finding a cure for IBD. It’s really unfortunate that there is little awareness about this disease.

I think I took this commercial a little too serious, oops! Enjoy the funny commercial below 🙂

Also, did anyone take offense to the elderly woman’s reaction? I did lol I was grossed out when he was clipping his toenails, that’s disgusting!