My life With
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Welcome! My name is Sara, President of The Young and The Rectumless. There really is no such thing, I just made that up, but there should be! #NoRectumNoProblem #UnlessThereIsAProblem
It’s not just my rectum that I’m living without; I don’t have my whole dang large intestine! Who needs a colon anyway? I mean they’re cool and all but they’re soooooooooo common. *yawn*
Anyway, welcome to my little corner of the internet! Inflamed & Untamed is about the area of my life that is my health but I am much, much more than chronic illness. In fact when I’m not doing advocacy work online or in the “real world” I try to make everything I can NOT focused on illness because it shouldn’t be an identity. I think that is important.
The long and the short of it is that I have Crohn’s disease which is a type of Inflammatory Bowel Disease (IBD) that often gets confused with IBS. THEY’RE NOT THE SAME!!
No. Nope. No sir-ee! It definitely does NOT bother me when people believe the misinformation they read online about IBD. Why do you ask? I also welcome the advice I didn’t ask for about how to cure my incurable chronic illness. Love that!
Anywho! If Crohn’s disease wasn’t enough I won the jacked up GI tract lottery because I also have a rare disease called, Chronic Intestinal Pseudo Obstruction (CIPO). It is considered the most severe form of gastrointestinal dysmotility with the highest morbidity and mortality rates. Fun! Because of CIPO I have intestinal failure and rely on Total Parenteral nutrition (TPN). I have some other health conditions as well but I mainly focus on the two just mentioned. Some of the others come as a bonus gift from them and others randomly decided to set up camp in my body all on their own. You can read my health stories in the next section if you’d like.
There is one other thing you should know about me that you may or may not have already figured out by now. I am in the gifted program for sarcasm so you’ll find a lot of that here. If it’s not your cup of tea I understand but I do hope it translates well over the internet and you can tell when I am being sarcastic vs when I am being serious.
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There are a few things I focus my advocacy on, one of them being evidence based information. I want patients to have access to high quality, accurate information which I believe to be essential right now with there being so much misinformation online. To be blunt I dislike the majority of what I see online from patient advocates and large health websites and I have a lot of thoughts on those things and how they influence patients. If you’d like to hear more from me about that you can visit this page (coming soon). Some of my other goals are:
I believe when people have the right information about their health condition it leads to empowered patients who take an active role in their health care and who can make informed decisions; all which lead to better outcomes. I also delight in sharing my story as a patient in hopes that others find some comfort or understanding in a world that can seem very isolating when you’ve got a chronic illness.
I just want to be honest and say that I do not accept friend requests on my personal social media accounts but you are more than welcome to communicate with me through the Inflamed & Untamed Facebook page or any other social media app associated with this website. I love talking to you guys and getting to know you through those accounts.
I hope you will understand that I like to keep my personal social media accounts separate from those through which I do patient advocacy simply because I don’t think it’s healthy to constantly be seeing nothing but people and things that involve chronic illness. For that reason I keep my personal social media apps full of other things I like and devoid of illness related content so that I can appreciate all the other things in life that make me who I am.
Patient Horror Stories on the internet
It’s important to me that you know that I speak my truth here but it is just that; MY truth. I love that the internet connects people who are living with chronic illness in the positive ways that it does but it can also do a lot of damage. Reading other patient’s stories can frighten people; especially those who are newly diagnosed who read about others with the same health condition they have going through very difficult things.
The chronic illness community online can be heavily sided in the most extreme and negative because most people tend to turn to the internet when things are going wrong. Those that are doing well usually don’t pop in just to say they’re doing great (I wish more would) because they are just out there living their lives. This leads to people becoming quite anxious about their future because they are exposed to many horror stories and not many success stories. Thankfully this unbalanced content does not reflect reality.
With that said, I share both the good and the bad of my experiences as a patient here because I’ve found both kinds of content to be very beneficial to me when I’ve needed it. When I needed hope I liked to read stories of other patients who had been through the things that I was facing and had a positive outcome. When I needed someone to relate to when I was struggling I searched for other patients who were in similar circumstances so I could connect with them and feel less alone.
Trust me when I say that there are people with chronic illness who are able to accomplish the desires they have for their lives. Many work full time, complete college, are able to be athletes, get married and become parents, and so much more. Alternately there are those who are on the severe end of the spectrum who struggle more than most. No matter where you fall I think it’s important that you don’t compare yourselves with others. If you are unable to do the things you see others doing it’s not because you are weak, are not trying hard enough, didn’t pray enough, don’t think positive enough, or anything else. ENOUGH of that crap! It all comes down to what illnesses you have and how they affect you specifically. Sadly it also comes down to how privelaged you are. Not all of us have health insurance, money, supportive family, live in an area with excellent hospitals and doctors, and so forth.
I’m so glad you stopped by and I hope that my little corner of the internet here has provided you with something positive – a laugh, some hope, new information, comfort…
With love, Sara