I can’t keep myself out of the bathroom today! Luckily I am not working, just a doctors appointment to attend later.
I went to a meeting at work like THIS last week! lol
I had an accident a few days ago sleeping. Awesomeeeee! :/
I *think* I have been seeing blood in the toilet for the past 3 days. I say think because I can’t tell if it’s blood or something red that I ate. Then I try to go through the things I have recently consumed and can’t recall anything red. But I argue with myself that perhaps I did eat something red and have just forgotten about it. Blood…I don’t have time for blood! I don’t have time for this!
Pain is there too but not severe enough to make me worry. Is it weird that it takes a lot to make us worry these days? Had a doctors appointment yesterday where they were concerned about my extremely low blood pressure. It’s always low I say…but I have been feeling especially dizzy this past week. But is it the disease or side-effects of medications, or something else? Round and round in circles my mind goes. The littlest of things are taking all of the energy that I have. I worked 2 hours yesterday and didn’t work today and all I can do is lay around.
I eat or drink and it hurts and my belly becomes hard and distended and then I start to feel caught. Do I eat and suffer with the pain or do I not eat and suffer with lack of energy and fatigue and dehydration?
But really, I DON’T HAVE TIME FOR THIS! I leave for New York in 2 days. My whole summer is full of exciting plans and things I do not want to miss out on. I can’t be getting sick! And so my mind pleads with my body. It tells me to just wait, remicade is at the end of this month, maybe you will feel better then. It tells me that this will pass in a few days and to just keep pushing through it. Isn’t this life now anyway?
My friend Lisa put it really well today when she said: “For as much as I share and discuss, I hide twice as much.”
This weekend it’s time!!!
Come meet me along with Brian and Marisa from the Intense Intestines Foundation. Celebrate World IBD Day weekend with us at this super fun event! There will be opportunity to meet with me one on one, be part of a video with us, take pictures, etc. Plus raffle prizes, giveaways, food, drinks, rock climbing, after party, and more!
Please come if you are in the NYC area. I’d love to meet you!
**ETA: After writing this blog I realize it’s all ovah the place! What’s new. ;)
What is going on in this head of mine?
I’ve never claimed my coping mechanisms were healthy but they served a purpose. I have learned how to bury feelings and abolish emotion so fast that it’s almost frightening. I can become mechanical and non-feeling in a blink of an eye, resulting in a hardened person. I don’t like saying that. It makes me feel bad. It makes it sound like I don’t care about anything or anyone which is the furthest thing from the truth. I have a heart that is so big and cares so much for others but when it comes to me and my life and how I deal with things I have watched myself push everything away at times. The walls I have built up have hurt others. Friends don’t understand me when I go through phases where I seem to drop off of the earth. They take offense to my lack of phone calls or lack of communication. Romantic relationships have suffered because I push everyone away from me at times. I don’t want to talk, I don’t want to open up, I just want to deal on my own. Give me space and i’ll be back…
I might seem cold and dark and unfeeling but the truth is that during those times I am suffering a lot. I need the patience and understanding of my loved ones. I need to trust that they will still be there when I come out of this. It isn’t that I want to be like this, but for some reason this is who I have become.
MECHANICAL: Before I had to learn to deal with the trauma IBD would place on me I had to learn how to deal with other less than pleasant events in my life. As a child your brain isn’t fully developed. You are learning and growing and the environment around you plays a huge role in how you adapt. My world was chaos. It was scary and unsafe and I had no way of learning trust. The people who were supposed to protect me and keep me safe from the world were making it unsafe and scary. As a result I went through a lot of things to cope, but in the end I learned how to depend on myself and how to NOT feel. It was easier than feeling. Throughout this I was also growing up sick and through the things I have faced with my disease over my lifetime I have had to become mechanical in a way to deal with them.
You become robotic (and by you I mean me). When I was marked for where my ostomy would be it was like a dream. It was almost like it wasn’t happening or never happened. I could stare down at the dot on my stomach written in marker marking the spot where my stoma would be, but for some reason I got through surgery mechanically. I went through a lot of surgeries, procedures, complications, transfusions, etc. mechanically because if I let myself feel what was happening I would have lost my marbles. You know that quote that goes something like,
you never know how strong you are until the only choice you have is to be strong?
It’s like that. There was no other choice, I had to go through these things, and so to get through them my brain has been trained to think it’s no big deal. I can bury down emotion and feelings so deep it’s scary, but they don’t stay buried forever…
That brings me to the point of this post. Recently I have been having flashbacks (welcome to the crazy head of Sara Ringer). These have been of both things that have happened to me regarding my disease and regarding other things in my life. A couple weeks ago it happened twice on my drive to work and the last time resulted in me crying hysterically and having to call in for that day. That in itself is a HUGE deal to me, because I NEVER let people see me like that. Yet I found myself on the phone crying to our office manager (and one of my best friends) telling her I couldn’t work.
PTSD is the real deal in my opinion. There has been a lot of talk about it in regards to the IBD community but even with the recent talk I still don’t think there is enough out there about it. Some people like to say it’s PTSD and others will argue that PTSD is only reserved for those who fought for our country. Either way I argue that if you’re not dealing with something now, you’re going to be dealing with it later. I also argue that going through traumatic events like surgeries, long hospital stays, or serious changes to your health qualifies as trauma.
Here is where I can get into how crazy I am, but I’ll spare you the details. The flashbacks, the triggers that set me off, the things I avoid, etc. What I want to stress is that mental health is just as important as physical health. We have to take care of our whole bodies. I wish certain doctors acknowledged this more. In the hospital I have many triggers and if I explain them to my doctor it is as though I am looked at like I came from outer space. It’s horrible to be made to feel crazier than you already feel inside. My stays in the hospital could be so much better if my anxieties were realized and I was given the help I need.
May is Mental Health Awareness Month. Last week I took myself to a new doctor to get help for the recent happenings in my head. When I lost my health insurance last fall I also stopped taking my anxiety medications because I couldn’t pay for them. Unfortunately I still had to pay $100 out of pocket for the new medications I am on now, but they have set me up with a patient advocate to get working on getting my insurance back. Having anxiety or depression does not mean you are weak. Having a serious disease and going through what you go through means you are strong! And you are even stronger when you can acknowledge you need help.
As for me? I am working on undoing the hardened person I have become. It’s not that I don’t want to feel, it’s that I can’t. I certainly don’t want to build up walls or push people away or deal with life on my own. One trauma after another and I am always on edge…
What is PTSD: Post-traumatic Stress Disorder (PTSD) is an anxiety disorder that can occur after you have been through a traumatic event. A traumatic event is something horrible and scary that you see or that happens to you. During this type of event, you think that your life or others’ lives are in danger. You may feel afraid or feel that you have no control over what is happening.
Anyone who has gone through a life-threatening event can develop PTSD. (from http://www.brainlinemilitary.org/content/2008/07/ptsd-fact-sheet-frequently-asked-questions.html?gclid=CIbtlf-oibcCFaNhMgodCS0A9Q)
Last November I participated in the Crohn’s Disease Blogger Summit that brought together prominent people in the IBD community who all share the common goal of changing the lives of the Crohn’s disease patient. The panel was sponsored by UCB Inc., a global pharmaceutical company along with Crohn’s & Me and the Crohn’s Advocate.
Expert panelist include:
Dr. David T. Rubin, GI at The University of Chicago Medicine.
Ally Bain of “Ally’s Law” or The Restroom Access Act
Jan Jeffords-Schenck of UCB Inc.
Michael Christiano of Crohn’s Advocate
Along with some advocates in the IBD online community.
I think what happened here is very important to the future of the role the internet plays for the IBD patient. Check it out! I am pleased to announce I will be participating in the next panel coming up soon.
Check out Crohn’s & Me and The Crohn’s Advocate!
**I have been given permission to share this video on my sites.
Did you know I have a zazzle store? I doooooo and it’s full of things you may or may not want. Even if you don’t want them you should get them because nothing says I have IBD and I’m proud like a mug. DUH.
No seriously, if you are interested I do have a zazzle store and it has mugs, buttons, stickers, shirts, and some other things with a bunch of different designs and styles. I make a teeny percentage off of the items sold and I put it right back into this blog. What things do I pay for? Simple things like the domain name or the cost of ordering and shipping out wristbands or things like ordering business cards. Other costs are silly things like costumes for YouTube videos and bigger things like I just bought a new microphone for doing voice overs on my videos. The costs do add up and in order to keep doing what I am doing (and start doing it better) I could use the support.
So you get IBD merch and I get to continue helping others. Win win! Check it out if you want. <3
Leave it to me to rain on parades!
Hello my lovlies. I have been “awarded” two awards lately and I must say how fantastic it feels to be recognized. Thanks! That made me feel pretty awesome that my fellow activists chose me for these “awards”. It really does (thanks you guys!)
Why does she keep putting quotation marks around awards?
I think one of the most important things to understand about a journey is that it isn’t always a steady uphill climb. There will be ups and downs along the way…
Self-esteem. Does it get you down? It sure gets me down at times, and lately it has been one of those times. I’m kicking myself saying things like “how can you write a blog and inspire others Sara when you’ve been so down lately?”
I talk beauty and self-esteem a lot and wonder…do I even LOOK like I know what I am talking about? I confuse myself most times so if you understand me then you deserve an award of some sort. ;p
I tell you about how beautiful my disease has made me feel and that it has made me feel better about myself than any time before and then a few months later I will come back and tell you how ugly I feel. It’s all a part of the head games I am playing with you and my plot to take over the world. No. No, it’s not that. It’s just because it’s okay to have ups and downs. The truth is my disease has made me feel more confident and sexy than ever before and at the same time uglier and more ashamed than I have been in my life. How is it that it works like that?
I posted this picture a couple days ago showing off my surgery scars. You know what? I LOVE my surgery scars. You know what I don’t love? My weight. This is the highest weight that I usually ever get to.
No actually this was the highest weight I have been in years. When I was in Chicago in April last year PROUD to show YOU that you can get through it. That even though I am not perfect and don’t always have the best self-esteem that I am a work in progress. I am proud of a lot of things that I have done and going through this (disease) is what I am proud of most. It’s hard. You all should feel super freaking proud too because it takes a strong person to get through this. And feeling proud makes me feel a bit more beautiful…
Those pictures are not by any means “fat”. I wasn’t even over weight. Even at my high weights people tell me I am thin. But because of the strange strange way I have grown up and adapted to life with a disease when I get to this weight I feel horrible. My self-esteem plummets and I don’t want to leave the house and wah wahhh wahhhhh! WHY? How terrible of me.
It’s about control. It’s the lack of control that comes with having a disease and how it ravishes your body. I think this happens more so to IBD patients who have grown up with the disease. Who have gone through childhood and puberty while sick. And then food…there is a lot of disordered eating in the community. Not necessarily anorexia or bulimia but disordered eating. We find our “safe” foods. There are those of us who have not been able to eat for months but rather were on IV nutrition. There are those of us who find pain in eating and fear in eating. Rituals, habits, and “safe” things become routine practice.
Medications cause weight gain out of our control. Malabsorption causes weight loss out of our control. Disease and all that comes with it is mostly out of our control.
It’s not your fault.
Look. It’s like this. I’m crazy.
Haha kidddinnnnng! I am for certain not a perfect person. If you were looking to read a blog of someone who is perfect you should move along. I have my ups and downs too. There is a real girl behind this screen and she has bad days too, just like you. And that is the beauty in it all. We can relate. I feel beautiful because of the things that I have done. Because I have gone through things that no one should have to go through and I have made it through. That’s pretty rad. I feel beautiful because I am able to help and inspire others and I have the bravery to share my story. I feel beautiful because I am a nice person and I care for others and I try. And some times I even see the beauty in my outward appearance.
Self-esteem is a tricky thing for me. My body is constantly forsaking me and I am left wondering where “I” went. There are a lot of days lately where I absolutely hate things. I hate the acne that I get. Quit screwing with my skin, body. Methotrexate made my skin horribly dry and patchy and my eye lids and cheeks would sometimes dry up so much that I could pull patches of it off. Suuuuuuper attractive. Try working in the beauty industry then. I could go on forever and rattle off a list of things that make me upset.
Oh weight. At my lowest I was 82 pounds. In the picture above I had probably gained up to the low 90’s. People would tell me that they could use my legs as sticks to start fires. People would tell me they were jealous of me. JEALOUS? I had just gotten out of the hospital after SIX MONTHS and had spent so much time in a hospital bed that I lost the muscle to even walk up steps and you are jealous of me? Hang on while I curb stomp you!
In my journey I have found that while in flare-ups I do not absorb. I do lose weight rapidly and am usually hospitalized and put on TPN. I find that when I am absorbing that I start to eat like crazy and binge eat during my “healthy” times because I have been so hungry and deprived for so long that I don’t have a sense of normal anymore. So much plays into the ups and downs of my weight and people always have to comment.
WHY do people have to comment?
Worse yet is that I have been “taught” that you can only be sick if you look sick. People take my disease and illness more seriously if I am underweight. Stupid.
Ohhhh the mind games.
And you men! You men who are underweight have it the opposite of us women. It’s looked down on to be male and so skinny yet as females the skinner you get the “better” you become.
Dumb dumb dumb!
Again taken at my high weight but yet I was feeling okay with it.
You reading this. You ARE beautiful. So am I. We are because of who we are. We are because we are strong people. My disease has given me a lot more self-esteem than I used to have in so many ways. I think the reason I like my surgery scars so much is because they tell a part of my story. They say “i’m strong” for me. But I can’t lie and tell you I love myself all the time. This disease has also taken away so much from me. At times it has left me so low that I didn’t know if I would make it. There are times still when I get so down that I can’t seem to pull myself out of it. This has made me ugly at times physically AND internally. I have lost my dignity and so much more than my large intestine over the years. But I have also gained so much.
It’s a journey. It’s up and down. Right now…as I weigh more than normal…my self esteem is low. It’s a stupid mentality and I know it. I KNOW it.
Love you guys!
Lately I’ve been kicking myself for not appreciating the body I had 10 years ago. It was energetic, flexible, muscular, and strong. Where did that girl go?
(Alright, sorry about the terrible quality of this photo but it was the only one I could find! No idea what I was doing with that purple scarf or why I was wearing dirty socks instead of my dance shoes. lol!!)
I often find myself thinking “Is this real life?”
And what I question even more is if this is reversible. I think I only question that because I want it to be reversible. Where do we go from here? And by we, I mean me and my body.
Will it get worse? Can it get better? What will I feel like when I actually am elderly if I feel like this now?
I am talking arthritis people. Like so many others out there with Crohn’s disease and ulcerative colitis I have the lovely extraintestinal manifestation of arthritis. It first showed up 5 years ago in my ankles when I was in a never ending flare-up for a very long time. At the time I was at my worst I was non responsive to the high doses of prednisone I was on, along with the other IBD medications I was taking. For awhile there were days I couldn’t walk because my ankles hurt so bad and had become so swollen, but I didn’t do much walking anyways those days. I was so ill that my days were spent in bed all.the.time.
It was actually my arthritis that got me admitted to the hospital and that was the hospital stay that resulted in my 2 surgeries and my six month stay of complication after complication. I simply could not walk the pain in my ankle was so bad that my mom drove me to the ER where after running tests and finding how low my blood levels were and how high my white blood cell count was there was absolutely no way they would let me go home. I was admitted, had some blood transfusions, and from there my six month stay began…
So anyway, that was when my arthritis showed up for the very first time. The three years following it pretty much stayed in my knees and ankles until last summer it moved into my shoulders. The shoulder pain was excruciating and left me crying just trying to do simple things like put a shirt on or brush my hair. Luckily I was out of work (yeah…lucky?) so I could be a dirty girl and not shower. But trying to sleep or even drive my car some days was too much because I couldn’t turn the steering wheel. This was when I had to make the decision not to do hair any more. If I was going to have days where I couldn’t even lift my arms up then how would I use a blow dryer or a round brush? I decided that doing just nails and makeup would be better because at least I can sit most of the time and I also don’t have to use my shoulders as much.
After a visit with my rheumatologist (who is awesome and treats the whole body and knows about my IBD) he decided that methotrexate injections were my best option. Since I was already on remicade he felt like adding methotrexate would not only help my arthritis but also help my Crohn’s disease. Remicade alone wasn’t quite cutting it and by suppressing my immune system even more this was a shot at feeling better. It would also slow down the development of antibodies to remicade. And so in March of 2012 I was put on methotrexate injections.
The combination of MTX and remicade did have me feeling better than I had before but the side-effects were terrible and the thought of putting those things into my body frightened me. So I stopped MTX for awhile until I lost my health insurance and couldn’t get my remicade for awhile so I went back to injecting MTX…then both…now just remicade again.
Now I mourn for the body I used to have. This month I have been noticing the arthritis in my left hip. Having it in my hips now is new to me. To date I have it in my ankles, knees, shoulders, hands, fingers, and now left hip.
And I question:
Are the medications I am on causing this or helping this?
Will this get better, worse, or stay the same?
I have been working out a little bit lately (I mean VERY little) and I am shocked at how out of shape I am. I did a 5 minute workout on On Demand and was like owwwwwww sunofa! I actually cried because I lost everything I worked most of my life doing. I was a dancer for so long and now i can hardly move. Just another thing that this disease took from me. It’s scary. I wish I appreciated the body I used to have. I took all that energy for granted.
“Be kind, for everyone you meet is fighting a hard battle.” - Plato
Don’t forget to follow me on instagram! Search sdringer
Congratulations are in order. I have made it out of the hospital for over a year for the first time in 5 years! Crossing my fingers that it stays this way for awhile.
Hi everyone! The time has come to announce my World IBD Day plans. I am teaming up with the Intense Intestines Foundation to raise awareness all weekend in New York.
I WANT TO MEET YOU!
If you are in the area you should attend The Climb for Crohn’s & Colitis at The Rock Club in New Rochelle, NY.
Who: Brian Greenberg the President/Founder of the Intense Intestines Foundation, Me (you know who I am), and Marisa Troy who is the newest member of the Intense Intestines Foundation and also writes her own blog.
What: An event where you can have fun and celebrate World IBD Day. This event raises funds for the IIF. Meet us activists and have a great time, even if you’re not a climber (like myself)! Ticket includes climbing day pass, harness, shoes, instructions, one drink ticket, one raffle ticket, food, after party, and more! Prizes, silent auction, giveaways, hear from the activists, etc!! I’d love to hang out with all of you and talk one on one. Hopefully I can give you all a hug in person and let you know how amazing you are!
When: May 18, 2013 3pm-11pm
Where: The Rock Club in New Rochelle, NY
Why: Raise awareness! Support a great cause! Meet others like yourself! Fun fun and more fun.
How: Visit IntenseIntestines.org for event details and to purchase your ticket. http://2ndclimbforcrohnsandcolitis.eventbrite.com/
So those are my plans on for Saturday. Then on Sunday we are taking over New York City!!! Not going to tell you all of our plans but we definitely have some great awareness projects planned for that day. Monday is all about recording videos and we want to hear from you. What topics would you like covered?
I hope that you guys are able to make it out. Let me know if you live in the area. <3<3
Where to find Brian and the IIF: http://www.intenseintestines.org/
Where to find Marisa: http://keepingthingsinsideisbadformyhealth.wordpress.com/
It’s fun to have friends with Crohn’s disease or ulcerative colitis. The tree bark cure will never get old. :p
I believe I have mentioned this before on this blog somewhere, but I have a problem with updating this blog on my current health. I love to share stories about the past but for some reason when it comes to updating about what is going on in the present, I suck.
I cried for two hours straight Thursday before the IBD round table that I spoke on. I just kept saying to myself that I needed to pull myself together because I was going to be on camera. This was a full blown anxiety attack at it’s best. I don’t know what is going on with me. The other day I was driving to work and started having flash backs to some more traumatic times and before I knew it was crying in the car. It’s things like this that I hate updating my blog about because for one, I don’t want anyone to feel sorry for me, and two, I don’t want it to affect relationships I have with the people I know in the “real world” who read this blog. However, I owe it to all of you to let you know that I struggle too.
So that is a part of where I am right now. Anyway, I love you silly billies and hope to have a new video for you soon. Hang in there and keep being the strong people that you are!
I had the pleasure of speaking again in the IBD Round Table discussion hosted by Frank Garufi Jr. of the Crohn’s Colitis Effect.
In the panel are yours truly plus Christina Matthies, Michael A Weiss, Sarah Choueiry, and Frank Garufi. To find out more about all of us you have to watch the video! ;)