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.

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