If you missed my IBD Pajama party you can watch it here!
For those of you who came, THANK YOU! I was so proud of you girls for chatting with me. I expected a lot of dead air and everyone being afraid to talk but you all were so amazing! I loved all the questions that were coming in. I couldn’t keep up! You deserve the biggest hugs and pats on the back ever! <3
Sooo…here is where I tell you I’m an idiot. I thought I would be able to go back to that page page later and see all your questions and respond to them but I can’t. Or at least I can’t figure out how to yet. :( I don’t want you to feel like I am ignoring ya. So we can do two things:
1. We can do another PJ Party again where I will answer more questions.
2. Message me your questions and I will respond in a blog.
For all of you beautiful girls who attended, what did you think? Your feedback will help me for future things like this. Did you like it? Should I do it again? Did you feel like this helped you in any way? What would you like to see done differently?
I am listening my little muchachas! I love you all soooo much and I am supporting each one of you as we go through life with chronic illness together. You are NEVER alone!
I woke up to the flu this morning. Ugh! Trying to stay hydrated when you’re missing a colon and have the flu is a full time job! But since I am home I am posting a video I recorded last week and have been trying to edit since. My stupid editing software is for the birds.
Anyway, I wanted to share this video with you guys. It’s posted on my other YouTube channel but I have a lot of thoughts on it related to the chronic illness community. Plus during last nights IBD chat on facebook a lot of us talked about the New Year and just planning for the future in general.
So this video is about creating a vision for the upcoming year. The idea behind it is that if you have it hanging up somewhere that you see it often, it will remind you all year long of the things you want to see out of your year.
Where I work we are required to write a vision for the year and we share it with our boss during our annual reviews. She then gives them back to us a year later and we can assess our year. I must admit that I turn into a hot mess around the time that we have to write our visions. Last year I wrote and re-wrote mine over and over for weeks because everything I wanted to accomplish scared me. My thoughts are always, “that would be nice but I’ll probably be in the hospital.”
I’ve honestly had panic attacks over writing my visions and used to hate hate hate it! To be even more honest with you guys, last year I tried to make my vision simple. I wanted to finish my apprenticeship at work, and my big goal for higher education was to travel to Premier Orlando with one of my co-workers and best friends where we were going to take classes and have fun and soak up some sun. TWO goals. Just two! I kept it simple in my career life I had thought and do you know what happened? Guess when I was in the hospital last year? Right when we were supposed to be in Florida. We had our plane tickets, our tickets to the show, our hotel room booked, and a few days before we left I was hospitalized. That hospitalization also made me miss Get Your Guts in Gear New York.
I cried. I broke down and sobbed because I was so tired of my disease ruining my plans. It’s just not fair, I thought! And…it isn’t. All I could think was if I didn’t have this stupid disease I would never have to worry about these kind of things. I then started to feel guilty that my friend had to miss going to Florida too and it spiraled into me feeling like none of my friends would ever want to make plans with me again because I am so unpredictable and unreliable.
That’s the thing about living with a chronic illness. It IS unpredictable. You just never know when your life will take a 180. Usually out of nowhere I take a turn for the worse and end up sick and just days before I could be feeling fine.
Point being, I have hated resolutions, visions, and making plans in general for a long time. I feel like I am just setting myself up for failure. It’s hard to get excited about something when you know that you usually miss out on things you want to do. This is still something that I am working on. It’s a work in progress and something I will always be learning … simply how to be okay with the fact that my sickness will sometimes get in the way of my plans and in the way of things I really want to do.
On the other hand I think it would be insane to just stop looking forward to things. That wouldn’t be good for anyones mental health. It is important to hold onto hope, to believe that things can change, and to look forward to the future. Do I think that I should just give up on looking forward to things because I am sick? No.
So I am looking at this New Year and setting out to do the best I can. If I acheive these things then that would be sa-weeeet! If not, I will deal with it. So those are my thoughts behind this vision board. I like it, It’s by my vanity in my room and it has things on it that keep me looking forward to the year ahead. Some of them are:
*Write a book (been wanting to do that for awhile. Will ya read it?)
*Drink more water! And cut back on my coffee (just a little) ;)
*Get more sleep and have a better night routine
*Go to New York and attend IMATS and IBD Prom
*Be active - my new clogging classes are fun!
*Buy better equipment. My computer sucks, I don’t have good lighting, etc.
*Finally file bankrupt and get rid of this medical debt
*I also think I want to work on my anxiety revolving around doctors. I even put off simple things like scheduling my remicade infusions because of some strange anxiety. Need to fix anxiety related to other things too - answering my phone, emptying my full voice mail box, checking the mail, etc. (Yep. I could be certifiably crazy!)
Please help me with my YouTube channel by subscribing. https://www.youtube.com/user/sadiessecrets?feature=watch
Time for me to continue my story…
I left the hospital after six months on December 22nd and a few days later it was time to celebrate Christmas. When I left I had only been off TPN for two days. Prior to that it had been months since I had been eating real food except for a few mini Reeses Peanut Butter Cups I would buy at the hospital gift shop as part of my daily routine. In fact, they wanted to send me home on TPN but i had no health insurance and there was no way my family could afford that. So I was sent home to learn how to eat and I was sent home on subutex, a drug normally given to addicts to wean them off and help with withdrawal. That earned me an alert in my files and during an ER trip later on I was refused pain medication and told I was a drug addict until my surgeon showed up to yell at them and have them treat me and remove that from my file.
Don’t even get me started on what six months in a hospital with no heath insurance does to you…
Everything felt different coming home. I was different. Six months is a long time but in a way it’s also not very much time at all. Not enough time to wrap your head around an ostomy, a j-pouch, what surgery does, and everything else that had happened. So while my hospitalization felt like it was forever, in the grand scheme of things not enough time had passed for me to adjust to my new body and my new life. In fact, I didn’t know what life would be like at all.
I didn’t feel like I was part of the festivities at all that holiday season. My mom asked me what I wanted for Christmas and I didn’t know what to tell her. “Clothes I guess”. I needed clothes to fit my new body. I hadn’t put on makeup for about 8 months, I hadn’t styled my hair in just as long. I lived in hospital gowns and sometimes pajamas.
It was a little after Christmas that I took this picture. As you can see my room was decorated for Christmas. Indicated my the reindeer on the door handle. lol
My hair had almost all fallen out and my skin was ghostly white. My body underweight and my skin as pale as a ghost. I forgot what it was like to feel pretty. I forgot what it was like to be normal. To just do very “normal people” things like have routine. Get up, shower, get ready, to go a job or to school, come home and do things. It had been so long.
I was gross.
My mom took me to the mall to look for some things to wear and to my surprise I couldn’t find any jeans that fit until we went into American Eagle Outfitters where they sell size 00. I put them on and they were still baggy but we went with those. I got a pair in 00 and a pair in 0. After that we went to Forver21 where I found long john style pajama pants that were gray with little blue hearts on them. These would be nice to keep me warm and they’re cute. So we got those too. After that we found some sweaters and called it a day. For the next few months any time I needed to wear real clothes I would wear my double zero jeans with the long john pajama pants under them to help hold them up.
Christmas morning came and we were going to my Uncle Tim’s house to see all of my dads side of the family. Today I was going to wear real clothes! I was going to try and do my hair and my makeup.
I went. It was different. I kept thinking about everything I had been through. Weird thoughts like;
This is my first Christmas without a large intestine.
Can I even eat any of this without a colon?
What do people without colons eat?
The whole thing just ended up being a strange day. I enjoyed time with my sister and my cousins but I was so exhausted. This is the most I had done in so long and I hadn’t really been sleeping for months. My Aunt and Uncle ended up offering their guest bedroom to me where I went and fell asleep until my family was ready to leave.
That was my first Christmas after it all changed.
Living! All this living going on out here.
Those were my exact thoughts when I walked out of the hospital on December 22nd after my six month hospital stay. I’m going to start telling the rest of my story here so I have to go back a few years. I want to share with you all what life was like after that hospitalization so prepare for the next series of blogs to be a bit of story sharing.
It was July 6th when I was admitted to the hospital and December 22nd when I left. In so many ways it felt like an eternity and yet at the same time it felt as if time stood still.
When time stands still.
July. I had high hopes of going to see fireworks a few days before for the 4th of July but wasn’t able to make it. At this point I was no longer living. Let me say that I use the word living differently than just meaning: being alive. Living to me is something more then breathing air in and out. It is more than just existing. Living requires quality of life. I was not living back then, I was just alive. No firework shows, no anything. I actually couldn’t walk very well because steroids (or arthritis) (or arthritis from steroids) had caused my ankles to swell and hurt. Arthritis back then was something new to me. It was one of those things I had read about when researching my disease. I knew it could happen but it always felt like I was reading a fictional story and not real life things that could actually happen to me when I’d read those websites. These patients with their arthritis and their severe disease and their surgeries and such. That wasn’t me. I wasn’t that bad. But now I was. I WAS that bad! And that summer was the summer arthritis and I met for the first time. To this day my ankles have never swollen so bad. I couldn’t walk, I cried just to get up, and it took me awhile to get going. Not that I was going anywhere…the only place I was going those days were to and from the bathroom. In and out. In and out. I’d spend my nights like this in the worst pain ever crying even more when I’d see how much blood I was losing. I’d collapse in my bed and shiver from the high fevers. The fevers, the pain, the blood loss, the trips to the bathroom, and the medications that were failing me. That was my life. My existence.
My friend Steve came to visit me one day that summer and we took a walk down my street and I could barely walk. He helped me around as we talked about how sick I had gotten. Steve used to be my workout buddy. We were always in the gym and he used to come up to the dance studio to watch me dance. Now I couldn’t walk. I was embarrassed but I also knew that out of everyone, if he saw me like this, then he could validate for sure that this wasn’t good. Then one day I was crying so hard because my ankles hurt so bad that I was holding onto the railing of the stairs slowly lowering each foot making my way down the stairs to the kitchen. My mom insisted we go to the ER. For weeks she had been pleading with me to go in. Looking back I don’t know what took me so long. But we have this funny way of tricking ourselves into thinking we are not “sick enough” for the hospital. Just wait a little longer…maybe the medication will start working…what will they do anyway?…last time I was in they just sent me home on higher doses of steroids…
But this day I agreed. I couldn’t do it anymore. I still didn’t go in ever thinking that this was the day that would lead to the biggest changes in my life. I wasn’t prepared! I had no idea! I REALLY had no idea just how critically sick I was. So we drove to the ER and I thought I would be coming home a few hours later. I didn’t even know what to say when I showed up.
"Uhhh well. I can’t walk."
"I also have ulcerative colitis (still had the wrong diagnosis back then)"
Once I saw a doctor before they really assessed what was going on they gave me a vicodin for the pain in my ankles (this was also before I had built up a high tolerance to pain medication) and it actually worked. My ankles felt better. Cool! I could walk. I thought I was going home.
But no. They wanted to run some tests on my legs. They wanted to do an ultrasound and check for blood clots and in the meantime they would take my blood and whatnot. And that is when everything changed. They drew my blood and I became much more of a priority to them after that. My white blood cells were crazy high, my blood levels too low. I was going to be admitted.
Still I didn’t think it would turn into six months. I didn’t know that my colon was about to come out! In a short amount of time I was hooked up to an IV where my steroids were transferred from oral to intravenous and the dosage was increased. Not long after that I was given a PCA pump for pain. My very first ever pain pump and OMG THIS IS WHAT I HAD BEEN MISSING OUT ON! For the first time in MONTHS my pain felt better. That night was the first night in I couldn’t remember how long that I didn’t have the pain that I usually had. Not long after that I received blood transfusions to try and get my blood levels up but they didn’t budge. Then they decided to take me off of all food and liquid and see if complete bowel rest would help at all so I was given a PICC line and put on TPN. All of this was new to me back then.
The higher doses of steroids were not helping, the TPN wasn’t helping, and they couldn’t even complete a colonoscopy because the inflammation was so bad that the procedure was too risky. Surgery. I needed surgery. Before I knew it I was talking to a surgeon, meeting an ostomy nurse, getting more blood transfusions so that I’d go into surgery with enough blood, and then I was waking up without a large intestine and with an ostomy.
It all happened so fast. And then you know how the rest of it went. Six months. My world became the hospital. It became the 4 walls of my hospital room and it revolved around being a patient. My world stopped. Time stood still. Yet out there people were living. My friends had all gone back to school to start the fall semester. People were doing things and I wasn’t. Summer ended, Fall came and went, and then it was winter. I left and it was snowing. I hadn’t really been outside in months. Last time I was out here it was warm and sunny.
How did this happen? How did this time pass for everyone else and my time stood still? Christmas was in three days and people had their gifts and they had their trees up and… life! Life was going on out here.
Do you guys ever feel like that? Friends stop calling because life just keeps going on and people keep on living while sickness has stolen your time?
I haven’t posted this yet on this blog but I wanted to share my new YouTube channel with you guys. As you know I started YouTube talking about life with IBD. I have to say, I’ve really gotten into sharing a little bit of myself with others through video. I wanted to create a channel that was for all the “other stuff”. Anything NOT related to my life with a chronic illness. It’s FUN! It helps me focus on who I am outside of being sick and it gives me something to do since I spend a lot of time at home. I really hope that you guys will subscribe. There will be vlogs on topics that I don’t talk about on my other channels, DIY projects, tags, hauls, makeup, fashion, life, etc.
Please please subscribe and share!
Thanks you guys. Love you!
I just have so much to say I don’t know where to begin. It’s not typical that I come here to blog and don’t have the words. I usually know what I want to talk about or am able to eloquently write a blog post that makes sense and gets my point across.
Today my brain is as much a mess as my body. Just… I don’t know how I’m doing it. It’s crazy isn’t it? How strong we are without even knowing it. I think back to the months before my surgeries and I was still going to work, still going to classes, still the Vice President of a student org, in a relationship, and trying to have a social life. I did this through excruciating pain, through such low hemoglobin I needed blood transfusions. I did it through blood loss and fevers and taking all these crazy medications. I pushed and pushed up until my body completely gave out and then I had to quit school and work. To this day I have no idea how I did it. I think somehow we don’t even realize how sick we are until we have no other choice. Until it gets so bad that you can’t do anything.
This is how I am feeling right how. I don’t know how it got this way and so fast. The hardest part is right now I just need someone to talk to. Usually I am here to provide a place for all of you - through my videos and my words I want you to know that you are never alone. Whether it’s just reading what I have to say or listening to me talk but never interacting with me, or if it’s sending me an email or message and actually interacting with me. I just want you to have an outlet, a place to get it all out and to not feel alone. Sometimes I forget that this is MY outlet too. And so here I am just writing to you. You don’t have to say a thing back, I just want to talk.
I.don’t.feel.good. I just know something is off, something is not right, but what is it? I’m not losing blood (that I can tell, unless it’s occult blood). I’m not in a ton of abdominal pain. These two things confuse me. They make me wonder if my Crohn’s is the culprit or something else. But then again since the removal of my colon this is how my disease operates. It’s not the insane amount of blood loss and the pain that makes you think you are dying that lands me in the hospital. It usually starts with fatigue. Fatigue so bad that right before I end up in the hospital I have to steady myself with the walls as I walk down the hallway to the bathroom or to my bedroom because if I don’t I just might fall. I tend to get dizzy and fatigued to the point that I can only lay on the couch and get up to get to the bathroom and when I do get up I am so weak that I need to steady myself. Then I start losing weight rapidly which contributes to the fatigue and the dizzyness. The weight loss is a sign that my Crohn’s is active and when I go in there is inflammation and ulceration everywhere. Which indeed means I actually am bleeding internally, I’m just not seeing it. The weight loss happens because I am unable to absorb nutrients due to the inflammation and ulceration in my intestine. Towards the end I also get really crazy hand and foot cramps that actually get so tight that I am unable to unlock my hands or feet and not only does that make me look crazy but it also HURTS. That is when I need to go immediately to the hospital because my electrolytes have gotten so out of whack that I need an IV to fix them. These are how my flare ups have been over the past 5 years. The pain is there, oh yes. The pain is there. But I always feel like I’ve been through worse so no big deal. Sad that you get used to certain things.
My good days have been few and far between and that makes me want to cry. This brings me to another thing I’ve been thinking about. I’ve been thinking about what my life looks like on social media. My instagram pictures show me happy, smiling, stylish, doing things. My facebook pics are the same. But that is everyone. Everyone looks better on social media. We post pictures of trips we take, our outfits of the day, the food we ate, what we bought. Not a lot of us post the reality of what our lives are actually like.
Truth. I give myself two hours to get ready. It takes me that long because I am so tired and have so much trouble with it that I need the extra time. Then I head to work where it’s getting harder and harder to make it through. I sit here tonight feeling so nauseous that I am afraid I’m about to get sick. Then I fear for tomorrow and what that brings and if I will feel worse and how I will get through it and when I will reach my breaking point. I am having so much trouble getting up in the morning and my body hurts so bad. This time of year my arthritis is worse because of the weather but it just feels extra bad right now. That also makes me think I’m in a bad flare up because generally my arthritis flares with my Crohn’s disease.
I look at my calendar and panic. I work Thursday (today), Friday, Saturday, Sunday, and Monday. Tomorrow is Christmas shopping, Saturday is a Camp Oasis counselor holiday reunion, Sunday is a white elephant party, Monday is bar night with some co-workers. I have a feeling I will not make it to any of those extra obligations and if I do it’s just more places where I will be wearing a fake smile. I cancelled two appointments I had yesterday and only made it to a dance class (YES!) because it was later in the evening and because I really really wanted to try it out.
I just can’t do this anymore. I hate to believe that I am this young and my body feels like it does. I want to have the energy of normal people. Going to work shouldn’t be this hard. It shouldn’t be hard at all. Doing extra things should not be difficult. I can’t even make people in my life understand this. Saying “I’m exhausted” isn’t easily understood because they associate it to what they feel like when they are tired. But this isn’t your average tired.
All I want to do is cry. I’m not usually like this. I am usually strong and positive. I just hate this so much at times. On top of the exhaustion, pain, and arthritis I have a cold that I can’t rid myself of because I don’t have the immune system. I need a break. I want a damn break.
Tomorrow I will get up and I know it will be a struggle. I know I will wake to terrible joint pain because I sleep and my body stiffens up and when I wake up I just hurt. I will then take my two hours to try and make myself look like your average glamorous salon girl. Then I will put on my smile and I will give my clients a damn good service and I will love every second of it despite the way I feel. I will love them for giving me a few hours that isn’t focused on this. Then I will go home and I will feel this way all over again.
I’m sorry you guys. I know that you look to me to be positive but you also trust me because I am real. And everyone, EVERYONE, isn’t positive all the time. And that is okay. I will be okay.
Thanks for listening.
NEW VIDEO: The Masks We Wear
I really don’t know that I even explained myself well enough in this video. All I know is that my health is really struggling at the moment and it’s hard to keep on smiling at times.
Did you miss my one on one interview with Frank Garufi Jr. at The Crohn’s Colitis Effect?
Watch this one on one interview where Frank dives into who I am as a person and who I am in the IBD world.
Just here to ruffle all your feathers again and this time I’m talking about the CCFA. The Crohn’s & Colitis Foundation of America.
So there’s been a ton of hate going around about the CCFA. Hate posts, revolts, look-at-me-and-my-ccfa-hate-letter, yada yada yada and I keep getting tagged in it like somehow you borrowed my brain and know what i’m thinking up inside of it, and decided that I agree with your CCFA hatred too, and then you post it and I’m all tagged up in that.
Lookie here. We all have opinions and we all feel entitled to them, and the world would be pretty boring if we all agreed with each other all the time. So cool, you have your opinion, and I have mine, and lets all live like little peaceful dolphins and unicorns sliding down rainbows.
So where do I stand? I DON’T hate the CCFA. I do hate the Escape the Stall Campaign, like many of you do too. Even with hearing and understanding why it was chosen, I still hate it. BUT I haven’t forgotten all of the good that the CCFA has done for us too. See, they can’t be perfect. They will never make everyone happy all of the time, that just isn’t possible. Right now I am making some of you guys upset because as an IBD Activist I can’t please everyone. You will disagree with me at times. A National Organization certainly will upset people.
Everyone hating on awareness week. WE WOULDN’T HAVE AWARENESS WEEK without the CCFA. They were the ones who got that passed by the US Senate. Not you. They did that work and because of that we all came together for a week and spread more awareness than most of you did in an entire year. Instead of focusing on small things you dislike about the CCFA that week focus on the fact that we have awareness week at all. They reached out to Frank and the rest of the Round Table to work with us and while maybe they didn’t do it exactly like we wanted them to, it was a step in the right direction. And they helped us promote it, and … well, we have to see the good in the bad. Who knows, maybe one day the President of the CCFA himself will join us for a Round Table. Mr. CCFA President dude sir, you are cordially invited to host an IBD Round Table with us.
They were around long before we were. They are a National Organization. They were one of the only sources of information about Crohn’s disease and ulcerative colitis around before we showed up. They were a resource for lost and scared patients looking for help. THEY started Camp Oasis which is what helped ME turn into who I am today.
Chances are if you’re taking a newer medication that helped put you in and keep you in remission, they probably helped make that happen.
Clinical Trial you say? I bet they helped fund that.
Running a National Organization is hard and it can’t be done perfectly. There is a lot of money involved and a lot of politics involved. While I completely agree with a lot of your thoughts and opinions, I certainly don’t hate the CCFA. Rather than revolting against them, maybe we can work with them. Yes I don’t like certain things they do but I think the only way to change that is to work together. Lives have been changed for the better because of Camp Oasis, Team Challenge, Take Steps, support groups, awareness week, new medications, education, etc. We can’t forget that.
I’m not trying to upset anyone, really. I just wanted to vocalize my opinion and have been thinking about writing this for awhile. I will continue to be me. To share my story of what this disease is like. The good, the bad, and the ugly.
Attention teenage and young adult girls!
Come hang out with me on Friday, January 3, 2014 at 7:30 PM EST
I’m inviting you to a pajama party in my room! What does that mean exactly? I will be broadcasting live from my room and you get to watch and type in your questions that I will answer while we are hanging out.
Put on your comfiest pajama’s, make yourself a warm delicious drink, and chat with me! I’ll be live and you’ll have an opportunity to ask me questions. This chat is geared towards teen and young adult girls living with Crohn’s disease or ulcerative colitis. We will talk school, relationships, makeup, hair, body image, growing up, etc. Don’t hold back, ask me any question. It’s going to be a ton of fun. Love you girls!
Please visit the link below and let me know you’re attending. If you scroll down a little you’ll see the event. This will not take place unless there is enough interest.
If you are not comfortable asking me during the chat, you can email me privately or message me here. All my contact information is in the about me section of my blog.
Can’t wait for our girl talk! Big hugs to all of you!
Can you believe that’s me!
Hair. It is so important to a woman.
I was born with a full head of thick hair and by the time I was 2 1/2 it had grown past my butt. My mom was one of those mom’s that didn’t want to cut my beautiful blonde hair.
See what I’m saying? lol
My hair has been nearly every color and every length since the days of my creepy long haired little girl phase. But it had always been in my control until I got really sick. It was just a fun way of expressing myself but then my disease got worse and worse and I started to lose my beautiful hair.
You guys have seen this picture of me before. One of the only pictures I have of myself from this time in life. You can’t really tell by the picture, but I had lost about 70% of my hair. I remember laying in my hospital bed running my fingers through my hair and (not exaggerating) pulling it out in clumps. I’d throw it on the floor and continue because at that point I gave no fucks about whether or not someone would find it nasty to walk into my hospital room and find hair balls on the floor.
Why did this happen? I can attribute it to a number of reasons. Mainly, the condition I was in at the time. Very underweight, being fed through a PICC line for months, steroids, undergoing two surgeries, malnutrition. I was so malnourished that my hair was falling out and I actually chipped a tooth in the hospital.
I used to be an okay looking person before then I thought. Now I had lost my hair, chipped a tooth, was pale, had fresh surgery scars, and was dramatically underweight. This is how I came out of the hospital after six months. So what did I do? Nothing at first. I was concerned with surviving. In too much pain to move or do much of anything. But a few months later I was miraculously hired at a salon and shortly after I cut my hair short. REALLLLY short.
In case you missed it, it was THIS short! Yikes.
Many studies have been done about women and the importance of hair. It’s important to us, to women hair matters. In some cultures it’s even seen as a psychological illness to removed the hair on your head. So anyway, when one loses their hair they are almost in a way losing their idenity, and that is exactly how I felt.
When I was hired into the beauty industry I realized just how much hair matters, and of course I was hired at a time when I was looking my worst. So I sat down in the chair of a stylist I trusted and I cut it all off. I didn’t tell anyone the true reason for going short, but I just needed to do it. I needed to start all over again. Not just because my hair had become so thin and brittle but because I wanted to let go. It was like shedding everything that I had just been through and starting over. Like a phoenix being born again.
My hair did start to grow and it came back incredibly thick (to my luck) and coarse. In this picture I had recently decided to try out hair extensions. The length of my actual hair was about the length of my front bangs in this picture. My short hair had taken away my feelings of being feminine and girly (and even attractive) and I wanted those things back. So I rounded up another stylist I trusted and she put in strand-by-stand hair extensions and I wore them for months (2010) until my hair had grown out long enough to where I accepted it.
At the end of 2010 I took the extensions out, went with really dark hair, and cut some bangs.
But not before deciding to go with an even more vibrant red! ;)
And in the summer of 2011 my hair was back! I went back to my natural color of blonde (to my mom’s joy) and that is when you guys met me. Over the course of the past five years I have lost my hair a few times. Not as severely as the first, and luckily I have thick hair so that it’s unnoticed until it becomes a huge problem.
Our hair is so important to us and losing it is just another thing out of our control that changes our appearance and makes us feel bad. It can be hard at times.
Last night during the IBD Round Table I did a little explaining about the differences between ulcerative colitis and Crohn’s disease. I just want to MAKE SURE you understand that these are not the only differences between these two inflammatory bowel diseases. I didn’t throw in everything.
Watch the Round Table here: https://www.youtube.com/watch?feature=player_embedded&v=IXf733zoYjs
I also want to point out that there are genetic overlaps between the two and than there can be changes in genetic expresion and IBD is being looked at as a spectrum disease (by some doctors) more and more and not as a clear cut you have A. or B. More on that here: http://www.newswise.com/articles/pouchitis-after-ulcerative-colitis-surgery-linked-to-changes-in-gene-expression
I also didn’t mention indeterminate colitis: When a patient shows inflammation in their colon but it’s not clear whether it’s ulcerative colitis or Crohn’s disease.
Unfortunately the Round Tables run fast and I have to give everyone time to speak.
Watch the Round Table. It was a good one.
I have a feeling I’m going to spark up some anger with this one. Don’t worry, I can take it.
There are two things I set out to do when I decided to become an IBD Activist;
1. Do my best to help others not have to go through the things I went through. Feeling alone, feeling ashamed, and being so isolated. Through my videos and my blogs I wanted others to hear me and feel comforted, to shake their heads “YES!” because they had been there too, and to relate to them because for so long I felt like no one in the world ever got what I was going through. Through my voice I wanted to tell your stories.
2. To raise proper and real awareness. I hated the myths and misconceptions out there about Crohn’s disease and ulcerative colitis. That people think IBS and IBD are the same thing. That people think these diseases are comparable to food poisoning or the flu. That people had never even heard of them. That people think that a simple diet change could cure me. Etc, etc, etc!!! So I shared my story, and I shared all the horrifying facts, so that people’s eyes started to open and ears started to listen to about what IBD really is. It is imperative to me that I spread information as correctly as possible.
Those are my two goals. I’m an advocate who wants to be real, to be relatable, and to help you all while I educate people about Crohn’s disease and ulcerative colitis along the way.
Here is where I make most of you angry… brace yourself
I fucking hate purple ribbons. You know why? Because someone just made up that purple was the color of IBD Awareness. It isn’t. It only is if you think it is. And butterflies? Where the fuck did butterflies come from? How the hell is this helping anyone? Dude, don’t get mad at me. I promise you I am not the only IBD advocate who feels this way. Chances are the other pages and blogs you see who don’t share purple shit feel this way too. I know because we privately vent about purple butterflies. ;)
Purple is the color of a whole bunch of things. See wikipedia. You know if Wiki says it’s true then it is. :p http://en.wikipedia.org/wiki/Purple_ribbon
Look. I’m not bashing you if you wear purple or like purple ribbons or want to share purple things you made, or have a tattoo of a purple ribbon with a butterfly. If it helps you personally, then I am for it. If it has meaning to you personally, then to each their own. It’s just not my style. I’m not that type of advocate. What you will see from me is real awareness. Stories. Pictures. Facts. That is the kind of advocate I am.
There are only a few colored ribbons that are easily recognized for a certain condition. For instance, everyone out there knows that a pink ribbon = breast cancer. But chances are you walk around with a purple shirt and purple hair and a purple butterfly necklace and whatever other purple shit you find and no one will know what it means. And it isn’t just the color of IBD, it’s the color of a ton of other conditions. As far as i’m concerned if we don’t have a color of our own (I pick chartreuse) then we don’t have a color at all.
I feel the same way about October and breast cancer month. Don’t get me wrong, a lot of good is done that month and to raise awareness. But as many people out there that are doing good, there are just as many who simply put on a pink shirt. Companies that wore pink but didn’t even make a donation. The month becomes so pink washed that the real reason it all got started gets lost.
Anyway, I had to let it out. I’m sorry. My apologies to purple ribbon lovers everywhere. You do know that I love you right?
*ETA: I also hate the term “crohnies” and hate poop jokes. I suck.
I am dedicating all my posts on instagram this week to IBD Awareness. You can follow me here: http://instagram.com/sdringer
Here is an example of types of things you will see;
First up is weight and appearance. Because of my Crohn’s disease my weight is constantly up and down. This year alone my lowest recorded weight was 102 and my highest was 115. My ultimate lowest was 82 pounds at 5’5”. Medications can cause a person who has Crohn’s disease or ulcerative colitis’s weight to fluctuate a ton. Especially steroids which can cause massive amounts of weight gain out of a persons control. For me, I am missing my entire large intestine and my other intestine is diseased. When it is full of bleeding open wounds I do not absorb a lot of nutrients. Not only does this cause rapid weight loss but also depletes me of vital nutrients. There are even more factors that cause a patients weight to fluctuate. Surgery, strictures, and more. I have often been fed intravenously, most recently this summer. What we’d like you to know: weight doesn’t mean a thing when it comes to health. A person can be extremely sick no matter what their weight. We’d also like you to know how hard this is on our self esteem and body image. For both men and women with Crohn’s disease or ulcerative colitis. In fact, I am currently struggling with body image.
Well, another awareness week is here.
Maybe you’ve noticed that I haven’t changed my facebook profile picture. Haven’t designed some unique cover photo or posted a bunch of statuses about my Crohn’s disease. There are no purple ribbons a plenty and no funny memes. Do I suck as an advocate? I hope your answer is no. (But I do hate purple ribbons. I know, I’m sorry).
See, the thing about me is that I make awareness something I do all the time. In fact, I consider it a 2nd job to run this blog, my YouTube page, guest blog, do the Round Table, Camp Oasis, GYGIG, and the many other events, activities, fund raisers, etc. that I do. It’s my life. Awareness for me doesn’t just occur this week, but every week.
I do however have some things planned for this week. Stay tuned for some videos you can share with others, a special Round Table, and more!
For all of you who are spreading awareness for the first time, congrats! Remember to double check the facts that you are posting. ;) Much love and support from me to you!