IBD back at it again . . . :(

As I embark on my 31st first birthday tomorrow, I’m reflecting on how 2017 has been so far , and it’s been a busy year. In addition, I’ve been eating what I want, not exercising, candy/soda galore. It was like YES! I’m on Remission so I’m going to eat everything I’ve denied myself for two years, and as a result I have gained weight which are normal consequences for such a diet.  Until last week .. . I saw blood for the first time in like a year . . . I didn’t think anything of it since it was not consistent. For the past two days, I have seen significant blood when I wipe and  today was the first time seeing it in the toilet, but I’m still hesitant to contact my GI. I’m scared . . . .

I really do not want to go back on meds and my financial situation isn’t great at the moment so I cannot afford anything extra right now. I do have hemorrhoids so my grandmother suggested hemorrhoid suppositories? never used them but I might try it to just see if it stops the bleeding. I have no other symptons, other than fatigue at the moment but that’s been constant for years. Sighs . . . I have been highly stressed out lately. I think my boss is purposely sinking the ship of our organization and a co-worker told me she’s quitting after our conference next month and I’m sick of putting out his fires . . . I’m just fucking tired . . . So as a way to relax I will be in a spa for 4 hours tomorrow and a custom makeover afterwards, it’s the way I decided to celebrate my birthday this year.

Trying to remain hopeful, taking one day at a time  . . . .

Empathy vs. Sympathy . . . .

When you tell someone you have a chronic illness what is the typical response? “Aww I’m soo sorry, but you don’t look sick?” “You look good and at least you’re skinny” have been common responses for me.  I always felt  the need to change the subject as soon as a person say , “but  you look really good”. I always took that response as “Why are you complaining?” . . . . Maybe I’m being oversensitive, but its hard to connect with people that do not live with your illness.  So the response of “well you look really good” is their way of being sympathetic because they can’t relate. Unlike a response of , “Wow I can’t imagine the pain you go through but thank you for sharing  and if you ever need anything . . . . ”

I found the below video which I think perfectly illustrates the difference between empathy and sympathy, do you agree?

Life is precious. . .

Last week I went to my great aunt’s funeral. She was terminally ill and bedridden for the last ten years of her life. After surviving a stroke, she could no longer speak and eventually lost her battle with cancer. It was hard for me to visit her because growing up she was such a boisterous woman and to see her so fragile, it saddened my heart. I believe that the last 10-15 years of her life would have been more pleasant if she received proper care/treatment, but insurance is a bitch. After her stroke, once her insurance no longer covered physical therapy she stopped going. When she started chemo for cancer, her body could not handle it, so she stopped treatment.  She was suffering for a long time and like many of my family members, we were sad but relieved that she was no longer in pain.  At the funeral, one of my cousins spoke about the last conversation she had with our aunt before she became terminally ill.  My aunt told her, “if you don’t feel well, get yourself checked out, don’t ignore it.”

Those were some powerful words. You have to take care of yourself. I know having Crohn’s will always be a battle, but my goal is to live the most comfortable life as possible. I am grateful for the insurance I have and even though my GI drives me crazy, I am grateful that I have been seeking some type of treatment. There are different treatments for IBD, and standard drugs (Aminosalicylates & Corticosteroids) is my first choice. Has it worked so far? No, but hopefully biologics will work *fingers crossed* You can only live one day at a time, trying not to stress thinking about the future.

Remaining hopeful.

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.

Kudos to: Sean Ahrens :) . . .

I found a  website called Crohnology, it’s a social network website for people that have IBD.  It was created by a young man named Sean Ahrens, he was diagnosed with Crohn’s disease at the age of 12.

Since my diagnosis at age 12, I have had a dozen major flare ups of the disease. I found that, for me, diets and supplements, stress reduction and mental relaxation, and exercise help. I heard many people on the internet claim that they had found the magic bullet, but I thought it was irresponsible to be so confident.
Just because these things worked for me, I wasn’t about to claim that they work for everybody. Instead, I decided to build a patient-powered research network that would allow patients everywhere to be contributing their own treatment experimentation in a way that could be aggregated for us to learn what actually works for whom. — Sean Ahrens http://www.crohnology.com

The site is pretty cool. I like the reviews of treatments and diets.

Spread the word! It’s a site in it’s infancy stage, the more people that know about it the better! Check out the videos below 🙂

Kudos to Sean Ahrens for spreading IBD awareness!

Sean Ahren’s story below