Explain your disease in 30 seconds!

UC blog

Does anyone find it difficult to be brief when you try to explain your illness? After writing for this blog for two years and all the research I’ve done I still don’t have that “Elevator Speech”.  An Elevator Speech can be defined as a clear, brief message or “commercial” about you . When I was first diagnosed and people were asking what is Inflammatory Bowel Disease (IBD)? I think I was a little too detailed. To me, explaining IBD was to discuss the many symptoms I had so the person could picture it lol which is a little much . . . but it was my daily life at the time, I only shared what I knew.   Even though now I know much more about IBD, I still don’t believe I am capable of explaining to someone on an elevator, in that short period of time, what is my disease. I came up with the following exercise to create my Elevator Speech :

  • What is the goal?
    • To spread awareness about IBD and share what it is like to live with the disease.
  • What disease?
    • In order to be brief, it’s probably best to talk about which of the IBD diseases you have, if you’re diagnosed. After a recent follow-up with my new GI, he believes I have Ulcerative Colitis (UC), . . . I swear it changes every year, but UC is my current diagnosis.
  • What type of disease?
    • I would say an autoimmune disease of the digestive tract, which still might confusing, so instead; a disease of the digestive tract.
  • How it affects your life?
    • For those that have had surgery or their colon removed you can say that, it’s very brief and a clear picture of how it affected your life. Since my disease is not as severe, I would say, I have to avoid eating certain foods that could cause severe pain.
  • End it on a happy note.
    • Since it’s a brief statement you want to leave it in a positive light or a call for action, which is something I always do when I end a blog post. “As always taking one day at time, and remaining hopeful”. Or you can end it with a call for action to find a cure, or want to become an IBD advocate, etc.

After doing this exercise my Elevator Speech is as follows:

I have Ulcerative Colitis which is a disease of the digestive tract that makes it hard for me to eat certain foods because it would cause severe pain. Even though it can be hard to live with this disease, I remain hopeful that one day we will have a cure.

I think it covers all the basics, what do you think? Do you have your own “Elevator Speech” about your illness?

 

Typical IBD struggle . . . .

A week ago I attended onsite training at my job, total training session was 4 hours. Prior to the training, the idea of being stuck in a quiet room with people where I’m forced to be social for four hours spiked my anxiety.  Not just for the social aspect,  but the past couple of weeks I have had digestive issues and a recent fit with diarrhea, on average I was going to the bathroom at least 5 times a day. My secret spot became the lobby bathroom to avoid the shame of co-workers knowing who “blew up” the bathroom, sorry for the visual lol. Overall the training session went better than I expected until it was it was lunch time. . .

We were asked to pre-order our lunch so I chose a meaty chef salad that was gluten-sensitive . It was basically lunch meat and lettuce, but I forgot to specify the dressing and discovered the default dressing  for this salad was Ranch dressing, I subconsciously smacked myself. Since I was one of the last people to return to room for lunch after a dash to the restroom and checking my emails, by the time I arrived everyone was eating I did not want to look like the odd ball refusing to eat, and was glad I ordered a side soup. I ordered  a cup of organic vegetable soup thinking that would be safe but of course my order was mixed up, I received a tomato soup with cheese instead. That’s when my stomach started to ache, thinking about my  GERD and the two hours of training remaining in this quiet room with 8 other people. I quickly observed the small group of us in the room and noticed everyone was eating all the food that was provided, someone was enjoying my soup! I just put the tomato soup to the side, saved it to eat for dinner in the safest environment, aka my apartment.

I was glad I missed half the time allotted for our lunch break so I could no longer torture myself by eating the ranch covered salad. When it was time to re-group I quickly put my salad and soup aside in the back of the room however, I noticed  that whenever someone stepped out they quickly looked at my half eaten salad and cup of soup uneaten. I’m glad no one said a word, I was okay with being quietly judged.

Nearing the end of the training session, my stomach was killing me, I had to go. I continuously looked at my phone counting down the minutes that I could escape to the lobby restroom, but people kept asking questions! I’ve noticed I like to torture myself. I could have easily said I have to go, meeting in 5 minutes but no,  I sat there began to sweat and shaking my leg to distract myself from the pain I was feeling, and of course we went 5 minutes over. When it finally ended and we all clapped and said goodbye, I ran to my desk to get my Mask spray and quietly walked to the elevator like nothing was wrong. Got to the lobby and ran to the restroom, first time I felt relieved that day .  . . literally .  . I hate ranch dressing!

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Wow!! Thank you guys for all the support! I started this blog last year as a coping mechanism, a  way of dealing with this major lifestyle change of having IBD. I started writing not knowing what I was talking about, but just documenting my daily struggles. 

Thanks to all of you for joining me on this journey and the continued support.

Thank you! 😘

Lost a fight with onion rings . . .

So I know eating fried food is never a good decision when you have IBD, but whenever I visit my mother she never has safe food for me to eat and I was too broke to buy anything. Late in the evening I was still hungry and didn’t think the frozen Nathan’s onion rings that I’ve had before would hurt, I was soo wrong. After 20 minutes  my stomach was sooo tight and I felt so nauseous. Then the stomach cramps started, I felt miserable for a good 2 hours. Exactly a week later I had my first experience with food posioning.

Now as I sit waiting to see my GI for a follow up and realizing I’ve been on Humira for 7 months and still have symptoms, I’m starting to wonder will anything work? 

Being Vulnerable . . .

It’s been a while, sorry 😦 but I do miss writing it soothes my soul lol

Just went to a friend’s farewell party and to be honest wasn’t sure I was going to go due to the headache I’ve had all day, but she was leaving to follow her dreams and moving to the big city NYC! So I wanted to be there. It was a very emotional night, a lot of kind words were said about her, then it came time for people to speak. I didn’t want to speak because I’m terrified of public speaking and my voice seems to always crack even when I’m confident. But, all the ladies at my table got up and we have all known each other for a long time, since undergrad, so we all said something. I was the last to speak and right before I didn’t know what to say, until my friend before me said how our friend was there for her in her lowest moments. I started to think of my lowest moment, which was in the hospital last April and how the young lady we were honoring visited me at the hospital. As soon as I opened my mouth my voice started to crack . . . oh god . . .

I started to say how she was always a positive person, even when I wasn’t and was there for me when I was sick and wanted to thank her for that, and started to cry and couldn’t speak. I think for one second I was speaking in tongues, it was so bad I thought. I got a big hug from her and quickly sat down because I was slightly embarrassed, I usually don’t allow myself to cry in public like that, and of course I never want people to see me in that way. . but even though I was embarrassed I was also proud of myself. Not only did I express true gratitude to a friend, but I let complete strangers know about my sickness all at one time. Something I would have never done in the past. I’m growing up. Allowing myself to be vulnerable which is something I would never allow people to see , has always been a fear of mine. I combated two of my biggest fears in one night and I’m okay, I’m fine, not hurt in anyway, other than my ego being slightly bruised 😉

I spoke to my grandmother afterwards, and she was like Krystal you’re human! Another friend mentioned, “I’m sure no one else thought it was out of place , but felt unusual for you.” It felt very unusual . .  Overall a good night,  and a learning experience.

Going to see my GI tomorrow to figure out what’s going on, haven’t been this nervous in a while . .

As always, living one day at a time and remaining hopeful.

 

I hate winter . . .

I’m a summer baby and love warm weather, and love it even more as I get older because it never causes hazardous conditions. Ever since I got into my accident I refuse to drive when there is any possibility of icy roads even when it comes to my health. I ran out of my Apriso pills yesterday and had every intention to refill the prescription but oh golly gee, I actually had a date for Valentine’s day, and it lasted longer than I expected, which was a good thing (will discuss in more detail in a later post). But sucked because the pharmacy closes early on Sundays, and its been snowing all day. As a result I have felt more tired in the past day, but i think it’s mostly due to my hectic, stressful lifestyle lately. Conference at my job finally ended and I can’t even relax, why is that?!? . . I’m still trying to figure that out myself. And I’m moving exactly a week from today and haven’t packed, I just have too much going on and no energy. As I continue to lay in my bed, and dreading going to work tomorrow, I’m reflecting on my recent lifestyle choices. I have been mentally and physically exhausted for the past two months, how much longer can I keep this up?

Life is already difficult, adding a chronic illness to it . . . just sucks