I have missed doing the things i love, like writing for this blog . . . Past few months have been annoying! I refuse to say hard because overall i’m living a good life and is now grateful i’m healthy again . . “now” is the keyword.
Last time I chatted with you I was going in for a colonoscopy because the bleeding, stomach pains, and frequent trips to the bathroom came back with revenge. The results of the colonoscopy showed I had proctitis which is an inflammation of the lining of the rectum. So I was immediately prescribed Canasa which didn’t work at all. I got so sick i took 3 days off of work and was on a gatorade, chicken broth diet. After another visit to my GI’s office they put me on Cortifoam as a temporary solution until . . . .dun dun dun!! . . they put me back on Humira! Sighs . . . as I sit slumped in a corner feeling defeated. 😦
Humira has been my saving grace in the past and I hope it works again this time around but reality is beginning to set for me . . . will I have to be dependent on medications for the rest of life with this disease ?!? Almost three years in and it’s still hard for me to accept, I just cannot grasp that this will be lifelong . . . wow . . . it’s such a defeating feeling. Prior to getting sick I took the initiative to be more healthy. I signed up for a gym membership, got a personal trainer so I can exercise safely this time around, then I got really sick. When I was diagnosed in 2014 it was too after I was physically active, I was diagnosed 4 months after doing my first Mud Run obstacle course, I was in the best shape of life. Could this be a trigger? Can’t be right? Another topic for another day.
I have officially started Humira, completed the horrible 4 injections starter pack 2 weeks ago and starting to wean off the cortifoam which was my 2nd saving grace. I’ll take cortifoam any day over prednisone. I’m back at the gym, PT sessions are over and I have now become a gym rat, at the gym like 4 days a week, cray cray! But I’m proud of myself! I overcame a flare to going back to doing something I enjoy. Now just need to get rid of this job (which is the main reason why I’m in the gym 4 days a week, another post for another day).
As always, I remain hopeful and taking one day at a time.
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 found this awesome article on BuzzFeed titled, “What you say to someone with chronic pain, and what they hear”. . It displays images of typical conversations that people with a chronic illness have with “normal” people everyday. I loved the article because I could relate, but then I thought, “why isn’t it okay for me to take people at their word? Why must I think more into it?” I have my many reasons and have been suffering from anxiety and insecurities long before I was diagnosed. . . . But being diagnosed with Crohn’s (Yes, I am accepting this crohn’s diagnosis for now) which is a chronic illness and how my life has dramatically changed in the past 9 months, these images spoke volumes. I’m always questioning people’s’ intentions. It’s the reason why lately I no longer openly discuss my illness outside of my immediate family, unless someone ask. I can just imagine someone rolling their eyes when I talk about my illness, even though I have never seen it happen, I can just imagine it or expect it to happen. . . I know . . .a sad, exhausting way to live that’s why at times I hate being alone with my thoughts.
BuzzFeed posted another interesting video “what anxious people actually hear”, of course it has a comedic twist, but I’m sure many can relate 🙂
It’s hard for many to understand . . . . . . .
I’ve been writing this blog since January and it’s been such a great experience! Not only has it been therapeutic, but also enjoyable. I have a new love for writing!
The one cool thing about this new job is that I maintain all social media and the website for our association, all new skills for me. Our website is run via Wordpress and I already discovered a new social media tool called Tweetdeck. By next year with these new skills, my blog is going to be fancy!!
If you haven’t already, please checkout my facebook and twitter account for TummyWoes
IBD Warrior @TummyWoes
Follow my blog with Bloglovin
Thank you! 🙂
Earlier this week I FINALLY saw my GI, even though it was only for 5 minutes. .The PA and my GI both agreed that the next step of my treatment is Humira. Since I’ve been bleeding for the past month and the low dosage of prednisone has had no effect, and Apriso has never worked (I believe), they believe Humira is the next best thing. My application has been submitted and I assume I just wait to hear from my GI office to pick it up or it’s being shipped to me? Of course I’m confused as always. I’ll send an email to followup.
In the meantime I was given a practice pen and a pamphlet to read, still haven’t read it just tossed it to the side. . . I really should care, but I’m not excited. To be honest, I rather take pills any day over an injection. It’s like my condition is at a new level when pills are no longer working, its scary. The PA highly suggested that I come in for my first injection but of course her earliest time is 8:30am, I need to be at work by 8:30 . . . so I said that’s not going to work. I can’t take time off right now. I’ve been at this new job for 6 weeks and they know nothing about my illness. I would like to keep it that way for as long as I can. Also, I don’t believe its smart to get an injection of a new drug and go straight to work, I might have bad side effects. I’ll just have to be a big girl and do it myself, I think I’ll be fine. Also, I have been playing phone tag with my Humira Ambassador. I plan to take time to actually speak with her, but its difficult to have any private conversations at this new job . . I’ll have to figure it out.
I’ll admit my biggest fear with this disease is the possibility of living with an ostomy bag. Just the thought of a bag being “attached” to me gives me chills. I hope that day will never come. When I found the below video on YouTube of an ambitious young woman who had to make the decision to have her entire colon removed, it touched my heart. After watching the video I cried, not because her life seemed to be difficult with an ostomy bag, but because she persevered. The video is very inspirational and I plan to download the entire film, I hope you do the same.
Kudos to Rebecca Zamolo for spreading IBD awareness!
I have to lighten the mood. My postings lately have been “ruff”, so today I would like to share one of my new favorite products, Poo-Pourri! For my fellow IBDers I hope you have heard of this product and yes it works!! When I was on vacation my poo-pourri was used often. I remember being at the San Diego Zoo when my stomach started hurting and having the urge to go in a crowded public restroom. I sprayed the toilet water with poo-pourri before use and to my amazement, I left the stall smelling better than when I entered. I was so shocked and had the biggest smile on my face when leaving the restroom, never felt so comfortable shitting in public lol.
You can buy Poo-Pourri at your local Bed Bath & Beyond store or on Amazon. Check out their hilarious commercial below 🙂
When you get sick I have noticed how people act differently around you. The people who I thought would be there and very supportive, did not appear . . . that’s different?!?!? Then you have the people who “tried to care” by saying all the rights things, but actions have always been louder than words for me.
Out of the blue, the people who I have not talked to in years have reached out to me with their kind words and well wishes . . . that was different . . but in a good way 🙂 I am grateful.
And then I have the friends that are still around, awesome, and have not treated me differently in any way, so I wanted to say thanks to them. 🙂 Even if they never see this post, I just wanted to acknowledge the positive people in my life. Without their love and support the past 6 months would have been very depressing. And for me it’s not always about having someone to talk to or getting me out of the house, the littlest things make me happy. I jokingly asked a friend that loves to bake if they could bake me a loaf of gluten-free bread and how it would save me $6 lol I didn’t think she would do it, but she did. It was one of the sweetest things anyone has done for me, I almost cried 🙂
I am grateful for the friends I have and If I can just get over my anxieties!! . . . . I look forward to meeting new people 🙂