Fellow IBDers

Team Wade's Wish is actively raising money for the upcoming Take Steps Walk 2021 Boston Event. If you would like to donate to our newest team member Leonelly, please do so by following this link: https://bit.ly/3d0y7U6 

I have been honored this year as the Adult Honored Hero for the Take Steps Walk 2021 Boston Event. If you would like to show your support, please feel free to donate by visiting the above link. My mission this year is to not only reach my fundraising goal, but also the goals of the my fellow teammates who have decided to raise money alongside me for the cause closest to my heart. Crohn’s affects me on a regular basis and now more than ever due to the fact that I am out of remission and am currently flaring. This year hits different because of that reason. If you know anyone that would like to donate, please feel free to share the link as they can donate directly through the website. One thing I know about our community is we know how to stick together and support one another as to why I wanted to post it on my blog.

Thank you in advance,

Okay, so I know I haven’t updated my blog in quite some time and it is due time that I do. I recently, within the last two days, just found out that my inflammatory markers are up again. I am a bit nervous when I had taken my blood test the other day and saw that result. I e-mailed him and then I called him. I was initially supposed to have my colonoscopy on February 10, 2021, but because of the not so good blood test results, he has decided to move this up to January 11, 2021. I always say December is the roughest month for me and I got this news on my diagnosis date, so the irony was just so uncanny for me. I am going into 2021 not knowing once again what is going on with my body. I find myself asking the questions of why me and why now? My marker went from around a 7 to then a 22 in January 2020 (normal range is 10 and under) and now it is has jumped to a 56. I was asking my GI if I was flaring, but he was saying there’s no way to tell until I get scoped and we see what is now going on with my body.

The idea of me going through all this impending hell scares me to pieces. I know I am strong, but this all will test me once more. We discussed the possibility of me needing to adjust my medication. I am hoping he doesn’t take me off of it and maybe just increases the dose. Starting a new medication worries me because I have already failed on one once before, so I know medicine is not a guarantee when it comes to working in aiding to calm the inflammation that is obviously now apparent in my body. This all truly came as a shock to me to be quite frank. I am not really sure how to process all of this because this is not the way I ever saw myself going into a new year. My greatest fear is that of the unknown and that is where I am finding myself right now. 

Positive Vibes Always,

I was invited to be part of this webinar today as a patient panelist and I found it very helpful for me to be able to interact with other patients like me. I know Zoom has becoming this emerging platform due to the recent times of quarantine and Covid, which are two terms we are using interchangeably these days. I think that having more of these webinars would be a good idea because we should have more open forums where patients have the opportunity to share their voices with each other. I learned a lot and when prompted, I enjoyed giving my responses to the questions that were received. One of the answers that I gave is what I wanted to address here in this blog post as I was referencing Tumblr in my answer. The question was: “What advice would you give a newly diagnosed patient?” I answered: You are not alone and that you need to find the right support. The right support for me ended up being here on Tumblr. The Crohn’s Disease and Ulcerative Colitis community on Tumblr has truly helped me a great deal. I am able to express myself regarding things surrounding my disease openly and honestly and it feels great. I think it is also important for a newly diagnosed patient to either find a creative outlet or stick with one they may have already had prior to diagnosis whether it was singing, dancing, poetry, acting, and the like. The webinar experience gave me a glimpse into what I have always wanted since the start of journey: face-to-face interaction with other patients and I think that Zoom could allow it to be more frequently. It was awesome to give my perspective on particular issues and to see others nod in agreement is always the best because at some point we all go through similar things one way or the other. I really and truly hope I get the chance to participate in future webinars as I learned a lot about mental health and my disease and this term, GI Psychology. I wish I had learned about that in the beginning when my emotions were completely all over the place and I felt like I couldn’t collect myself. I was most happy to hear from my fellow patients and see how similar we are within our own experiences. I hope everyone has been doing okay and this made me realize more than ever how much I have missed blogging.

I wish you all the best,

We were able to raise $2,523.00 for our team, Wade’s Wish, for the Take Steps + Virtual Boston event. I know my first walk ended up being virtual, but I made the most of it. This was the first time I have ever raised money like this for a charitable cause and I never thought we would be able to reach our goal, so I am proud of what we did as a team. I am beyond grateful for all the donations that helped me reach my fundraising goal. Yesterday was the Take Steps + Virtual event and I reached my goal just in time too. I know I want to participate in future walks because I want my efforts to make a difference in the lives of others that share my struggle. We were able to raise money for a charitable cause closest to my heart. My team members helped raise money alongside me and that support and encouragement is what I needed to continue. Crohn’s Disease may affect my life on the regular, but I was able to have this small victory that will change the lives of someone someday. 

--Your Fellow IBDer,

It’s crazy because I was supposed to be on the schedule for work this week and I was frustrated at first about it, but the other night I was throwing up. I then thought to myself that it was a blessing in disguise. I know my family thought that my job wouldn’t believe me if I did have to go in and if I was out for weeks and then when I have to go in, I would all of the sudden get sick. I was telling my family that if I had to call in, I would have because we certainly don’t pick which days we get sick. That’s the difference from the way we think about it as opposed to your average healthy person. I know the greatest lesson I have learned during my near decade with this disease is that you know your own body more than anyone else. When I said I was going to vomit, I knew it was going to come no matter what I did. When the nausea pills do not work, then you just sit and play the waiting game for when you will rush to the toilet. Sometimes it is just better to get it up and out of you, so that way you’re not lying down afraid to fall asleep because you don’t know when it will heighten and attack. 

You have the people that cannot fathom how you’re so positive and upbeat and then when I have times like these, I just want to tell people this is why. I cannot go through life like the rest of them without a care in the world and live my life. I have to care because a bad day will come eventually without much warning. I know it partly is due to my own forgetfulness. I fell asleep without eating anything and then I woke up with nothing in my stomach. I woke up nauseous and then I knew it spelled trouble for me. During my time with Crohn’s Disease, I have always said I would rather have diarrhea than go ahead and vomit. Unfortunately for me, vomiting has happened more often than the diarrhea, so that’s why I always carry nausea pills with me everywhere I go. It’s all about being prepared with inflammatory bowel disease. We get locked and loaded for pending disasters. 

Sometimes I look back on everything I’ve gone through over this last decade and I still don’t believe I have had Crohn’s as long as I have. Crohn’s Disease has certainly made me a stronger person in so many ways. You have that added motivation to fight that much harder to achieve your dreams. I had someone actually ask me what motivates me and I told this person that my disease motivates me as well as the people who have it as well. I want my fellow patients out there to know they can do it. We can do it and we will show the rest of them to never count us out even though we have a disease in tow. Hope everyone is staying safe and healthy during these difficult times we find ourselves in these days. We may be confined to our homes, but we IBDers know how to combat social isolation. 

Love and Hugs,

I have finally decided to join the Take Steps Walk that the Crohn’s and Colitis Foundation of America holds every year. I have been wanting to do this for a while now and I wanted to wait until I will have nearly 10 years under my belt experiencing Crohn’s Disease. It’s quite the milestone to have for ten years and realize that a cure still does not exist. I wanted my first walk be for a cause that affects my own life and that’s what I am intending to do here. I have a fundraising goal I have set for myself and I am very thankful for the friends that have donated or shared my posts in regards to it because I know it won’t be easy, but I also know I have time because the walk is all the way on June 13, 2020. I have always known what my team was going to be, but I wanted to wait before I registered with it. I will be walking in the Boston area as I am in Massachusetts and my team name is Wade’s Wish. I have two friends that have signed up so far to join my team and I am going to ask around and see who else would like to join me on such an important walk.

I know it will probably bring out a whole range of emotions for me being out there walking for something I deal with every single day. The Take Steps walk has been on my bucket list to do for a while now, so I am look forward to it. I am a rookie when it comes to fundraising, but I spoke to the coordinator and totally open for suggestions is what I told her today. I feel like this is the next step for me in my journey with Crohn’s Disease. I want to immerse myself physically in my community. I know a friend of mine who did it last year and she said she liked the experience. She has Crohn’s Disease and she said she will be doing it again this year, so this added extra encouragement for me to go ahead and sign up. I wanted to share this with you all because I wanted to let my extended family know that I am doing it for us and I am ready for it, both on an emotional level and on a physical level. I know the coordinator said it was a mile, but regardless of how long it is, I think it’s going to be quite the experience for me as a whole. Hope everyone has been feeling well and I wanted to wish everyone a belated Happy New Year!!

Love and Hugs Always,

Today is Day 7 of #IBDAwarenessWeek2k19 and I wanted to commemorate the ending of this week with a video talking about my 2019 with Crohn's Disease and also how it affects me and many others. The road hasn't always been easy, but I am blessed to say I have had certain individuals in my life that have been in my corner these past nine years. I think I can be my authentic self here because I wanted to end this week by sharing my thoughts surrounding my Crohn's Disease. Feel free to share with your family and friends out there whether you have IBD or not. I hope to continue to have these types of discussions in order to have people know there are people out there in this world with either Crohn's Disease or Ulcerative Colitis.

Love and Hugs Always, 

I slept right through the remainder of the sixth day of our week, but I still want to put up a blog post for it, so here we go. I achieved what my gastroenterologist called remission from my Crohn’s Disease on December 19, 2012, so it took me nearly two years to reach this milestone. Being in remission, I went and hit the ground running with respect to applying for jobs. I had realized that I can pick up the speed applying because my life after college had promise and it had hope if that makes sense. I struggled so much going through college and being very sick. Luckily, I was blessed with some awesome college professors, one notably that I know is responsible for my continued success back then. Remission allowed me to see that better days do and will come.

I know to be very thankful for the days that remission gives me because I know there’s a chance that it is not going to last forever. I have bad days here and there, but there are not as frequent as when I was flaring and my disease was active as heck. I am able to eat more foods and not have to worry about the effects they were going to have on me upon consuming them. Six months after remission, I was hired at the job I have been in for the last six and a half years. I was able to see that my dreams can start coming true. Just like I worked very hard to be in remission, I have to work that much harder to maintain it. I want to one day create my own nonprofit organization for people with Crohn’s Disease or Ulcerative Colitis. That’s one of the things that is high on my bucket list. I know my health can change at the drop of a dime, so I need to know as much as I can while I am as healthy as I am, so that way I can possess the proper building blocks to propel myself forward in life. Remission does not mean I am cured and I wish that people understood that better. I still have bad days, so when I am having one of them, please don’t tell me that you thought I was better and I shouldn’t be having those because it seems to always come from someone who doesn’t have my disease. Thanks for reading up to this point and I hope everyone has had a good day six of our week.

Love and Hugs Always,

IBD Awareness Week 2k19 Day 5: Wearing Purple with Awareness on Display

Today I made sure to wear my purple to show my support for the cause closest to my heart and one that affects my own life as a Crohn’s patient. I am thankful for my co-workers who showed support for the cause along with me by wearing an item of clothing or jewelry that is purple. It meant a lot to me today. This world can be changed together and getting the word out there about inflammatory bowel disease and its existence is what I strive to do. I don’t want another patient that has been diagnosed with either Crohn’s Disease or Ulcerative Colitis to never have heard of either of these upon diagnosis like me. I did not know nor had I ever heard of it prior to receiving my proper diagnosis. I certainly enjoyed the 5th day of our week and this is how I celebrated it. 

Love and Hugs Always,