I was just reading my friend Melissa’s blog (hey M!) and she was saying how people sometimes throw around phrases like “I thought I was going to die” or “I could just die”, all the time but really don’t mean it. She then went on to talk about how she really did think she was going to die…
Totally relatable right? Well it was for me anyway. I DID think I was going to die at one point in my life. Maybe more than one point in my life, but I certainly remember the last few months with my large intestine being scared every day that I was going to die. No really!
On the flip side have you ever been in the position where you almost become so used to things that you find yourself saying/thinking “I had no idea I was that sick!” After months of going to the bathroom only to find a toilet full of blood, it had become sadly normal. It started out as terrifying and turned into life. Only to go to the emergency room to receive 3 blood transfusions and work for weeks and weeks to get my blood levels to go up. As I lay there in the hospital getting those blood transfusions I was thinking wow, I am actually this sick.
Those last few months with my large intestine were months I was sure I was going to die during many nights. The blood loss. Visible evidence right there in front of my eyes that I was bleeding internally. Downright terrifying! The pain is something I still haven’t worked out how to describe accurately to friends and family. Pain that knocks you to the floor in an instant. Pain that makes you certain that your intestine is about to perforate and you’re going to go septic at any second. Pain that feels like raptor talons are scraping down your insides… nope. That still doesn’t seem to make it sound as bad as it was.
Then there were the high fevers. A sign that my body was working hard to fight off what was going on inside. Waking up with soaking wet sheets, soaking wet hair and clothes every.single.night. By the end it was the pain, the bleeding, the fevers, the night sweats, the numerous (over 50 once) bathroom trips, the arthritis that made it difficult to walk, the medications, weight loss, and so much more that made me sure that I was going to die. My body was losing this battle.
And then you’re mind starts thinking about that. About death. About what sick people must feel like. Then you laugh at yourself because this IS what sick people feel like. YOU’RE sick. It wasn’t a laughable joke or a silly phrase, “I thought I was going to die”, was real. After that came surgeries, complications, and lots and lots of time in the hospital where I brushed death. I spiked a fever of over 104 degrees and was convulsing only to be rushed to the ICU and wake up days later to find out I had an awful infection.
Now, as sad as it is, these things don’t scare me. I hear friends, family, and co-workers who have never been sick before or hospitalized before tell tales about how they are scared of needles. They speak about things that scare them medically and I am all…no big deal. It’s life. I forget that to a normal person my life would scare the shiz out of them. I see needles all the time. I am hooked to an IV every 7 weeks. I’ve done injections on myself. I have spent more time in hospitals than in some places I have lived. So on one hand there is the “I thought I was going to die” part of me who gets scared of her health and the things that are going on. Then there is the other side of me that is all “I had no idea I was that sick” because I get so numb to this that it all becomes no big deal.
So yeah. It’s Crohn’s & Colitis Awareness Week. I guess this is my obligatory awareness post. This entire blog is awareness. My videos are awareness. It’s what I do all the time, not just this week.
It’s day 29 in Wego Health’s #NHBPM and let’s be honest here, I didn’t exactly write every single day this month. Ah well, I tried. Today’s prompt is: Write About Unexpected Blessings of Your Health Condition.
This post somewhat ties into yesterdays post and will probably go off in all sorts of different directions because, if we’re being honest again, you know that I tend to do that!
Remember her? Yeah, that’s me. I used this picture when I wrote about how “my disease made me ugly.” Not physically ugly, but internally nasty. This picture was taken probably during month 3 or 4 straight in the hospital. I was going through a lot (read the post) and had become a miserable person. No seriously, read the post - it’s a good one. I was so so so scared for the future that mentally and emotionally the only things that existed inside were depression, anger, fear, and sadness. I was angry and upset that this was my life and that the life I used to have was taken away from me. I was fearful that I would never recover, that my pain would never go away, that the terrible complications I was having would exist for all time…and I could not deal with it. If you told me then that I would be here typing this out to a large audience who reads my words and watches my videos I would not believe it for a second. I would not believe that this girl, the person I am today, was my future.
And that is what leads me into today’s promt, write about unexpected blessings. Last night I was feeling extremely blessed. I was getting those warm fuzzies you get when you’re feeling so lucky you could just burst. I was filling out holiday cards to some of you because I said on facebook that I would send cards to the first 10 people to message me their address. When I checked 4 hours later I had an overwhelming amount of messages from you guys. I am still amazed that so many people care so much and would want to receive mail from me. I was also reading messages and emails from you guys and hearing your words and your thanks makes me so happy that I can help some of you in some way.
This life. This life is something I never pictured for myself. My life dream was to finish college and go on to be a high school teacher. I saw myself married by now, I saw myself financially stable (ha!), I saw everything basically opposite of what it is. I don’t have that job, I’m financially drowning, I’m not married, I’m not “perfect”…and I love it. Because what I am is happy. So here are my unexpected blessings due to my disease.
1. Being able to say that I am blessed because of my disease. Not many people are able to look at it like that. Hell, I didn’t look at it like that for a long time. So this in itself is a blessing.
2. If I had never gotten sick I wouldn’t have the job I have today. I found my job 2 months after being discharged from the 6 months I was in the hospital. I said this before but I was underweight, weak, had very thin thin hair because most of it had fallen out, and just didn’t look good. I saw an ad on craigslist for a salon that was looking for someone to work their front desk and I randomly applied. Why not?, I thought. Applying for that job was one of the best things I have done. I work in an outstanding salon and 4 years later I am trained to do hair, nails, makeup, and some other random things. The energy in that place is second to none and you can’t help but be inspired. Then there are my friends. This morning I woke up to another one of my very close work friends who shared my blogs facebook page with others. Jessi was one of the first people to donate about 4 years ago when I did the CCFA walk because she had a friend who had Crohn’s. I never have forgotten that, and since then she has become a great friend of mine. I already told you about Nadia, and then there is Sarah. Those are just my closest people but I can pretty much call almost everyone there (we have around 60 employees) a friend. My boss is a woman I look up to in so many ways. I don’t think i’ve met anyone like her. She’s beyond beautiful and has this balance where you know she is a powerful leader but you also know you can count on her as a friend, a coach, and everything. If there is a go-getter in this world it’s her. In fact, you have to be careful about telling her your plans because if they slip out she will put them into action whether you are ready for not! I love that. She has done so much for me in ways I don’t think she even realizes and I am thankful for that. I want to be a beautiful blonde powerful leader who also has a heart of gold just like her. Can you guys tell I am blessed to have my job?!
3. Being sick brought me closer to my parents.
4. I honestly don’t think I would have been a happy person had I not gone through all the trauma. I look at life completely different than I used to. I think I am grateful for this one the most. Even if I had it all I probably wouldn’t have been happy with it. I appreciate life, the little things, the big things, and everywhere in between. I am a better person.
5. I have purpose (well at least I feel like I do).
6. The relationships I’ve built with so many of you. There are some of you that I have built very close friendships with and each a little different kind of relationship. I don’t want to name out everyone specifically because there are so many of you. I just hope you know who you are.
7. Camp Oasis and GYGIG. My two IBD families.
8. I am proud of myself.
9. I have a very unique outlook on life and people that most people do not have. I think it’s going through this. We are all changed by this aren’t we? It’s just how we change that makes us different. I have this knowledge of knowing what it’s like to be that bad. I know what it’s like to be that sick, that scared, that un-human. I also know that I have gone from there to get better at times and then I get worse at times. I know that as good as I am feeling at this very second - that it will not last forever. I know my future may have more surgery. That medications sometimes come with consequences. That medications that work now can fail later. That many days I hurt and I am tired and just want a break. So that has made me into a person who appreciates the good days so much. I appreciate people in my life and I just look at the world differently.
10. What I do now. This blog, my videos, my facebook page. The work I do all over the internet and out in the real world. My job. Everything.
Everything now. It all would not be here had I never been sick.
Write about: Life and Death
Recently we lost Mimi to our community. I can’t pretend that I knew Mimi well, but I did know her on twitter. I have been keeping up as her family members have updated us on her life and death. Earlier this year we also lost the young Alison Atkins whom Jess Grossman wrote about, and after that we lost Jennifer Jaff. A year ago death hit me personally when I lost a friend of mine. A few years before that I lost my childhood best friend. What all these people have in common is that they have Crohn’s disease.
Death from cancer most likely the side-effect of medication. Death from bowel surgery that went wrong. Death from cardiac arrest. Death from a body that gave out too soon? Death from “complications of Crohn’s disease”. Though the direct cause of death in all of these cases wasn’t Crohn’s disease itself, I can’t help but think that had the Crohn’s disease never existed in the first place would this have happened? I don’t believe so. In the end, it all comes back to the disease. A disease that is so awful that surgery is required for so many of us. Surgery that took the life of one of my very own friends. A disease so strong that harsh and terrible medications are required and we are forced to choose between living with the affects of the disease or taking a gamble and using a medication that could have the potential to even kill us. Doctors always say, “Fear not, the risk is low.” Yes. It is low. And yes, I do take these medications knowing that. But the risk IS real. It’s so real that people in my very own real life have been taken away too soon.
This spring I had that terrible realization that I am perishable once again. I sat there as my doctor had just suggested I start doing weekly methotrexate injections and still continue doing my remicade infusions. My mind started to swim and my vision went fuzzy as he started listing all the potential side-effects. Even the most common side-effects sounded scary! He explained the need to monitor me very closely with regular blood draws and how X Y and Z could go wrong. I left not scared of the needles or scared of doing injections on myself, but scared to death…of death.
I think that if you live with a chronic disease death has to cross your mind once or twice at least. The first time I saw the amount of blood I was losing through my bowel movements I was scared to death! This wasn’t right. This wasn’t supposed to be happening. This can’t be good! There have been many instances where I have that the realization that I am perishable. Everyone knows that. We, as human beings, sick or not, know that at the end of life comes death. But in our world I think we are forced to think about it more often. I have watched friends I love and people I only knew online taken away because of disease.
Today, I am supposed to write about life and death. And so now that I have written about death I want to talk about life. Without coming so close to death myself I don’t think I would appreciate life in the way I do. We all will have our last day. Until then, let us make the most of it. Let’s cherish the sunshine on our faces because it might be the last time we feel it. Let’s be thankful for the things we have. Let’s love the people in our lives and try to leave a legacy. Let us be remembered for the people we want to be remembered as.
This is our time, right now, here on earth. Every time someone is taken away from me I am reminded just how short our time is. I remember to be a better me.
Today I am to use a picture to inspire a post. I have this one picture of myself from when I was a kid that I have been thinking about a lot recently after looking at it not long ago. I look at it often now these days and all these feelings from my childhood and adolescence rush back into my mind. I think about those times and I wonder how I got from there, to here. Today is one of those days where I am letting you in a little bit more than usual, to the person that I was and to the person that I am today.
I wanted to use a few pictures for this post. So this girl right here
is me. Yikes right!? It’s okay, you can laugh. I do.
I want to tell you how I went from that girl to the girl I am today. Crohn’s disease played a big role.
As a little girl I got teased often. Bullied a lot. I was small, quiet, afraid, and walked with my eyes on the ground. By all outward appearances I was the exact opposite of cool and I was an easy target to tease. I had freckles the size of continents on my face that I absolutely despised, and a retainer in my mouth that flopped around when I spoke and caused me to talk weird. My hair was thick and unmanageable, and my growing body was skinny and lanky when the other girls were developing curves.
During puberty when other girls were getting boys attention I was lucky if I wore clothes that matched, brushed my hair, or put shoes on. It’s a miracle that I have any style today. On more than one occasion neighbors wondered why I was running around without shoes on outside even in November. To this day I still hate wearing things on my feet and if I am home alone I’m a big fan of the no pants rule! I was awkward, shy, and very unconfident. When I was growing up super models were Cindy Crawford, Tyra Banks, and Claudia Shiffer. They all had curves. They had boobs, they had butts, and they had clear picture perfect faces. Me? Well, I had freckles. Freckles everywhere. Big ones. I had no curves. I didn’t even hit 100 pounds until I was well into high school. I was embarrassed of my long skinny legs and skinny body with it’s protruding tummy. What I didn’t know then was that super models were going to have long skinny legs when I got older. I didn’t know that freckles were not going to be considered “different and ugly” but “different” like a rare gem. Why is it that when I got older my freckles faded and I grew curves? Cruel cruel world!
Anyway outwardly I was a mess, but inwardly I was worse. The only place I felt happy and free was when I was in the dance studio or on stage because I could pretend I was someone else when I performed. I was good at something and I ran with it. I loved that I could lose myself in dance and forget the world.
and this, is also me.
I was sick here.
Not sick with Crohn’s disease. Sick with self-hatred. Sick with low self-esteem. Sick starving myself from food because that was how I dealt with inner turmoil about things I will never blog about. Today people call me a “perfectionist” and I have to laugh because I have eased up a lot on myself. Back then I would freak out if I did anything “wrong”. By the time I was 20 years old you would have thought I had it all looking in from the outside. I had been working at the same place for 5 years and was assistant manager of the bakery department working full time and the lead cake decorator. I did that full time and taught dance lessons 3 nights a week so that some days I would just go from one job to the other. My students were the best in the studio and winning top scores at competitions. On top of those two jobs I went to school part time with a 3.8 GPA. My “free time” was spent working out in the gym, choreographing dances, cutting music, etc. for my students, and spending time with the boyfriend I had by that time been dating for 4 years. I fully supported myself living in my own apartment and made more money than I knew what to do with. On the inside however I was a mess. My life was “perfect” but nothing made me happy. In fact, I feel sorry for the people that had to spend time with me back then.
What people didn’t realize (besides those closest to me) is that I was obsessively working out in the gym all the time and spiraled out of control into such an unhealthy relationship with food and my body. My hair started falling out in clumps, I had stopped having periods, I had constant headaches, and was freezing cold all the time. I had the whole world in my hands but was too miserable to appreciate any of it. I would freak out if I didn’t choreograph an award winning dance for my students. Freak out if I wasn’t the best. The best at dance, the best at work, the best everywhere. I would freak out if I ate too much, if I didn’t do a good job working out in the gym, etc. etc. etc.
Then this happened.
My disease got worse. Worse than it had ever been in the many years before.
This got in the way and no matter how bad I wanted to go to school at the time, I couldn’t. No matter how bad I wanted to dance, I could not. It didn’t matter if I wanted to work, to hang out with friends, to have a relationship. None of that mattered because I was sick and my disease stood in the way.
My health took everything away from me. It took my good credit and gave me medical debt so large that I can’t even face it because I had no health insurance. It took my flexibility, muscle, and athleticism I worked a lifetime on and erased it in what seemed like an instant. I lost so much muscle I couldn’t walk up the stairs. It destroyed relationships, it destroyed my body, and nearly destroyed my world. My health took away my dream I had to become a high school teacher because I couldn’t remain out of the hospital for more than a few months time and would not be able to work standing up, full days, for a full year. My health took away EVERYTHING and I had no choice but to accept it.
I got angry. I got so angry I took it out on everyone. I got depressed. I got sad. I constantly thought about what my health took away from me and I didn’t know how to move forward. I had no idea how to accept not being able to do what I wanted to do in life because I had always pushed myself to “perfection”. But now I had to learn how to do difficult things. I had to learn to be easy on myself. I had to learn to give up dreams and find new ones. I had to learn that I have to be flexible and accept that there are going to be times where I can’t do the things I want to do. It’s still hard, but I’ve gotten there.
Now I’m her. I’m that pretty girl up there (yup, I called myself pretty. Sometimes I believe that now) who writes this blog and has become somewhat of a leader in this community. I have a purpose. I feel more proud of what I do now than of anything I have done before. I feel beautiful. I NEVER felt beautiful until going through all of this. My scar doesn’t make me hate my body more. It helped me love it. I don’t work out obsessively any longer and I don’t dance but I like myself and the way I look more than I have previously. I learned to let go (mostly) of obsessing.
I want to say this to you if you don’t know how to deal with things being out of your control. I want to say it gets better. I hated that there was nothing I could do to control my health and I was just along for the ride. I hated nearly losing it all and having to change the entire direction of my life and pretty much start over. It is unfair. We didn’t deserve this. But - it can be a blessing in disguise if you let it. It can be one of the best life lessons you’ll ever have the pleasure of learning.
Today, I still strive to be my best. But I have a new idea of what “my best” is. I have a new career, and one that I love. I have the best boss and the best co-workers who have become some of my best friends in the whole world (total overuse of the word best). Yes, my credit was ruined, and that sucks. Yes, I had to move back home at one point and yes, I had to quit school. That all sucked. But when you lose it all you somehow learn that life goes on. You HAVE to learn to accept it or else you just live angry and miserable and who wants to do that forever? I have finally accepted that my health, for the most part, is out of my control. I have a disease, it’s not my fault, but I can’t change it. So what I do now is appreciate and love the good days. I work my hardest when I can and when I can’t I do my best to be okay with that. I love this blog and what it has become. I love who I have become.
If Crohn’s disease hadn’t taken away what it took, it would have never given what it gave. And what it gave me was me. A happy me.
As “sick people” we sometimes focus solely on our physical health and forget about our mental health. I can see how that happens. We get so caught up in trying to put symptoms in remission, on our meds, on our pain, fatigue, etc., that we forget to take care of what’s upstairs. Sadly our doctors are not great at taking care of our mental health either. They focus on treating the physical aspects of our disease and forget to point us in the direction of support groups, chronic illness counselors, and helpful websites.
There is a direct link between our mental health and our physical health. Of course, our mental health DID NOT cause Crohn’s disease or ulcerative colitis. I can’t stress that enough. However, it would be silly to say that you could go through all of this and NOT be affected mentally. I know that in my worst times I have gone through some serious depression, anxiety, and isolation. It can work the other way too - when our mental health is off balance it can trigger flareups. Point being, our mental health is something we shouldn’t ignore. It’s not something anyone should ignore whether they are healthy or not, but certainly something we shouldn’t ignore.
This morning I woke up in pain. I’ve been doing that lately, where I wake up and can hardly sit up straight because the pain in my abdomen is so bothersome. For some reason a few hours later it seems to calm down enough to get through the day. I also woke up stressed. I imagine part of that has to do with having a very real dream about someone I try not to think about. Ugh. My mind was also cluttered with a long list of “to-do’s” and I have to work this evening and knew that before I get there I somehow had to write a blog for today’s topic, and do some other things. I didn’t like today’s prompt (your life as a reality show) and had been sitting here stressing over writing it. Then i realized that I don’t HAVE to write anything. Why am I stressing? Why don’t I just continue the “me day” that I started yesterday?
#NHBPM Day 16 bonus topic: How do you take time for yourself? So here I am. I AM writing a blog for today, but I decided to not write about today’s topic and pick from the bonus list and write about how you take time for yourself?
I used to never take time for myself. Ever. Until I realized just how important it is to take a break from life. Yesterday was a day I used to just relax. No pressure, no deadlines, just relax and focus on myself. I woke up when I wanted, wrote a blog, and decided to call work to get in for a pedicure. That was nice! I must say our pedicure thrones are awesome. It’s a whirlpool of heaven for your feet. Just sit there and relax with your favorite beverage and read a book or a magazine while your feet get pampered. (If you live in MI you should come see me for one). After I got home from that I put on my most comfy pajamas and gave myself a manicure (pictured here) and waxed my eyebrows. The rest of the night I spent watching trashy reality television and relaxing. It was nice!
Taking care of yourself allows you to take care of other things better. When we let our mental health suffer all other areas of our lives suffer as well. Sometimes I like to detox. Not detox as in fasting or doing some silly colon cleanse (who has a colon anyway?) I detox by removing the negative things in my life. How can you “detox”? Here is a list of things you can do to remove life clutter and start new.
- drink hot herbal tea
- go makeup free for a day
- journal about changes you want to see in your life
- cut out sugar for a day or two (or for good)
- run/sweat for half an hour
- drink lemon water
- eliminate caffeine
- take a hot bath with epsom salts
- get a massage
- open windows in the car or house to let fresh air in
- write down negative things you want to get rid of in your life and burn them
- take a walk in silence
- practice deep breathing for a minute
- do yoga
- go outside into nature
- give up alcohol for a week
(I swear I’m not naked in this photo)
My first boyfriend asked me out in traditional 6th grade style by writing me a check yes or no letter and in it included that he wanted me to be his girlfriend because I “was the only girl in class who could make him laugh.” Just a couple weeks ago I found a silly to-do list a friend of mine made at work and on it was to write down the funny things Ringer says. It’s no secret I’m a bit of an oddball. I march to the beat of a very different drum and still possess and use the imagination of a 5 year old. I’m a weirdo, it’s okay you can say it. You guys have said it to me many times when you’ve watched some of my more silly videos where my personality shows a bit more. I just like to call it quirky. ;)
Today, for day 10 of NHBPM, we are supposed to write an LOL post. To write or share something funny, but this post isn’t going to be funny I’m afraid. You’d think I would have a whole bunch of funny health related stories to share (and I do) but the more I thought about it, the more I wanted to touch on WHY we use humor in our community.
What do we joke about most? Poop, butts, and bathrooms. No wonder people wrongly interpret Crohn’s disease or ulcerative colitis as a “pooping disease”. We make fun of ourselves because it’s easier than getting real with another person about what is going on in our bodies. Let’s face it, it’s not easy to talk about. How unglamorous is a disease of the digestive tract? It isn’t exactly dinner conversation. Well, it is in my house but not most peoples!
What is really happening? Disease. Disease that causes damaging inflammation in the digestive tract. Usually in the large intestine and end of the small intestine but for some of us it can be in the mouth, esophagus, or stomach too. The word inflammation comes from the Latin inflammare - to set on fire. Inflammation is the reaction to injury or infection causing swelling, redness, and pain. In our case our insides react to what it thinks is “bad” bacteria by attacking itself with inflammation. If you think about what happens when you have had an injury on the outside of your body, say your elbow. You fall and scrape your elbow and it becomes swollen, red, and inflamed. This is your immune system trying to push out bacteria and viruses in the wound. Once the immune system has finished it’s job the inflammation turns off and you start to heal, the redness and inflammation goes away. In IBD, bleeding open wounds (ulcers) appear within the GI tract and the immune system tries to heal it in the same way that it would with the cut on your elbow. However, unlike the cut on your elbow that heals in a few days our immune systems don’t turn off and inflammation is chronic. Thus the ulcers remain until they are treated with medicine or surgery.
So what does this really mean? For one, pain. Not pain like a scrape on your elbow but pain like a raptor was scraping it’s talons on your insides and causing them to bleed and shred apart. This chronic inflammation causes the symptoms of Crohn’s disease and ulcerative colitis…read on.
Why do we make fun of ourselves? Who wants to tell their friends how many fingers they’ve had up their butt not for fun? I’m sure none of my non-IBD friends have gone to the bathroom and stood up to stare at a toilet full of nothing but blood. It’s not easy to talk about, it just isn’t. So we use humor to explain things to others or sometimes because you just have to laugh. You have to laugh or else you’ll cry.
Inflammation in the colon makes it hard for the colon to do it’s primary job of absorbing liquid and turing waste into it’s solid form, thus resulting in diarrhea. Not diarrhea like you’ve got the stomach flu, but diarrhea like you went to the bathroom 30+ times in a day (I have). This inflammation causes urgency. Not urgency like gee I really gotta use the bathroom so I better find one soon, but urgency like you can’t even walk across the hallway or you’ll have an accident. Above the age of 3 you should not be crapping your pants, but we are walking talking people of all ages who can’t even control their own bodily functions at times. Mortifying and scary. I have had such terrible internal bleeding that I would literally just poop blood at times. After I lost my large intestine the accidents didn’t get better, they got worse for awhile. I wore adult diapers for months because I had little control over my new pouch made out of my small intestine that had been stapled to my anus to act like a large intestine should.
(Here is a collage of some of the times I have made fun of myself. The first is from camp this past summer being super heroes. I was Gut Girl and my friend was Super Pooper. The 2nd is me with some of your favorite Crohn’s and colitis bloggers during a bathroom photo shoot with toilet paper. The 3rd is from the same photo shoot and the 4th is the sand toilet my campers made for the sand castle competition this summer.)
This is why we laugh. We laugh and poke fun of ourselves because sometimes it’s easier than facing what is really happening. Disease in your bowels is not easy. In order for a doctor to get a good look at what is going on internally he has two options of accessing your digestive tract (3 if you have an ostomy) either your mouth or your anus, and it’s usually the latter. I can’t tell you how many times I have had a doctor stick their finger in my butt and it never gets any less humiliating as they put their gloves on and lube up their finger and make you roll to the side. I have had too many scopes done where my behind has been on camera for all in the room to see. I have had numerous butt related tests (who knew there were so many!), been in positions I don’t even want to think about during surgery, had to have a catheter up my butt for a week to drain my jpouch, etc. It’s humiliating. I have no dignity left which is perhaps why I don’t mind sharing this with the internet. And everything I have written above doesn’t even begin to cover it. It doesn’t touch on skin tags, fissures, fistulas, abscesses, rectal disease, strictures, weight loss, side-effects of medications, skin problems, joint problems, eye problems, liver problems, etc.
We laugh. We laugh so we don’t cry. We tell poop jokes, butt jokes, and spread bathroom humor because it’s easier. We make fun of ourselves to get through the more difficult times. We laugh…
(This is still my favorite bathroom humor picture from our photo shoot in Chicago)
In truth, our disease is no laughing matter. It’s serious and people need to know that. That is why we should always use a dash of reality along with our humor so that people understand it’s not just a pooping disease.
We’ve all felt tired. I thought I knew what tired felt like. In the past I had been known to hold 2 jobs at once while going to school and teaching dance lessons on top of fitting in time at the gym and then maintaining a relationship and social life. I was tired! Or at least I thought I was.
Then I learned what absolute exhaustion felt like and I realized I had never felt anything ever in my life like this. My body required 3 blood transfusions once I was admitted to the hospital in 2008. Okay, so I suppose losing so much blood over the previous months could make a person feel tired. On top of that I had been sicker than I had been before for months and had lost a lot of weight. My white blood cell count was way too high, my blood levels way too low, and I wasn’t eating anymore but being fed intravenously. So that contributed to the tired too. Oh, and I just had a major surgery where they took out my entire large intestine and rectum and gave me an ileostomy. Yep. A part of my small intestine was now poking through a hole on my stomach and I had to wear a bag around it at all times to collect waste. But that’s not all! During that surgery they also took the end of my small intestine and with some cuts and staples here and there formed a pouch out of it and then stapled it to my anus. Sexy right? Hardly. And this is where my story of tired begins…
Today is day 9 of the Wego Health NHBPM and the topic is to tell a descriptive story about a memory. Descriptive you say? Stapling a pouch to my anus wasn’t descriptive enough?
My memory begins at home. I had been in the hospital for a couple months now and was discharged. I had been discharged once before this but was readmitted the same day that I left. This time I had made it one day and I was hopeful that I would be able to stay home now for good. Or at least for the next few weeks leading up to my 2nd surgery. I was wrong again! Anyway, I decided to get back into the swing of things and take a shower and get ready. It would be my first time taking a shower not at the hospital in I don’t know how long, and the first time wearing make-up and real clothes in just as long.
So there I was. Up in the room that used to be my sisters that had a little bit of her things and a little bit of my things in it. It was the smallest of 4 bedrooms in my parents house and not really being used anymore. I had just moved back into my parents house a couple of months before being admitted to the hospital because I was so sick that I could no longer work, go to school, or make any type of living to support myself. I lost it all and had to admit defeat and move back in. They kindly paid the ridiculous price for my medications because I had no health insurance and my mom so badly wanted me to get better. I moved back in from my college dorm so my new room in my parents house looked like a college dorm, complete with mini-fridge. Oh, and I had no bed. No bed because I slept on a futon at college and it broke. So when I moved back home I threw the futon matress on the floor and slept on that. I was too sick to care…
Anyway, there I was in that small bedroom in my parents house trying to start the process of getting ready. I chose this bedroom because it was the only room with a full length mirror in the house and had a large desk where I could put my ostomy supplies. I looked in the mirror trying to recognize who I was now. Red hair, so thin. Acne on my face from the months of prednisone and IV steroids. Me, with a swollen belly from the air they pumped into me for surgery, and a skinny malnourished body. My surgery scar was still fresh and red and had the steristrips on it. And there was my ostomy bag… I stood there and wondered if I should shower with the bag on my stomach or if I should take a shower with it off and just let my stoma breathe. Is this real life?
Dear god am I tired. I sat down on a chair at the desk. My body was so weak from this past year and it was finally taking it’s toll. I couldn’t believe it. Did I really just sit down before I got started? I stood back up and placed all my ostomy supplies out on the desk before me. I figured this would be a nice place to change my appliance. I placed the curved scissors, the stencil I used to measure my stoma, adhesive remover wipes, a new bag, a trash bag, deodorizer drops, and some gauze before me and decided I wanted to shower with the bag on because I was just too tired to take it off right now. So I walked to the bathroom and stripped myself bare and stepped into the shower. Tired. So tired. Why is it that shampooing my hair and washing my body seems so difficult? It still felt nice to clean myself somewhere other than the hospital and to be independent. Everyone was worried. Knocks on the door checking to see if I was okay. My mom didn’t even want me to shower alone. “Leave the door open” she’d say. “I can stay in there with you” she’d tell me. ”Have someone in there with you”. Yes mom, I would say back. Did I look that bad? I WAS that bad.
Somehow I finished my shower and that took everything I had. Everything. I sat down and I cried because I forgot how easy it used to be. How you never think about things like your morning routine. How fast and easy it is to take a shower, dry your hair, put on clothes, put on makeup, and get on with your day. I had never felt tired like this. This was exhaustion. This was something worse than exhaustion. My body was weak. I imagined that this was what it must feel like to be sick. To have a terrible disease. And that was when it hit me that I AM sick. I HAVE a terrible disease. All of these things had happened so fast that I was still trying to catch up. I was so tired after my shower that I walked back into that tiny room and sat down again. I waited a few minutes and then changed my ostomy bag and looked at my emaciated body in the mirror. That bag looked even larger than it was up against my small body.
This was not tired. This was something worse than tired. This is exhaustion that you can’t even describe to another person. This is something no one could even comprehend unless they themselves have gone through it. I never did finish getting ready that day and I was admitted back into the hospital a couple days later only to continue to lose weight and become more weak and more tired for the next 5 months until I couldn’t even walk up the stairs…
This office is obviously designed for a child. It’s happy, inviting, and most likely designed to ease the anxiety and fear associated with a visit to the doctors office. There are many things on the wall to keep a childs eye busy, the exam table looks fun, the color choices work…
Why do our doctors offices look like this, or in some cases worse than this? The fear and anxiety of going to the doctor does not go away as we age, but the way we are treated as adult patients is extremely different than pediatric patients. Nothing about this office is welcoming. It looks cold, sterile, and maybe for a new patient even a bit scary.
He looks like he’s having fun…
Anyway you guys, I LOVE to design. Actually I love anything where I can put my very right brained brain to work. It started with dance and choreography, then becoming the lead cake decorator in a bakery, now working in a salon… I love telling a story through something, whether it be a dance that I have choreographed and carefully selected the perfect music, costume, and “look”, a piece of furniture, or even the way I dress myself from head to toe. My shoes, clothes, hair, makeup…it all tells a story. It’s a form of art and expression. In fact, since I was younger getting dressed has always been more than just putting on clothes that looked okay together and I still love making costumes! The funny thing is this - I am awful when it comes to computers and designing anything using one. Haha awesome right? Makes blogging a piece of cake. *rolls eyes at computer-stupid self*
I especially enjoy taking something drab and turning it into fab! And doctors offices (hospitals too) are soooooo drab, don’t you agree? I was thinking this the last time I was in to see my GI. To a new patient I would imagine it would look scary. A poster of diseases on the wall, exam table all alone in the center with it’s paper liner. No paint on the walls, cold tile floor, and not much else in the room besides a sink and a chair for the doctor. It’s hard to remember what it’s like to be a new patient but I could imagine that nothing about this room would calm anyones anxiety. To me the room just looked uninviting. As patients we come in when we are sick. As patients not only are there the physical ailments of our disease but there is the anxiety of visits with our doctors, fear of the unknown, and often depression. People fear hospitals and doctors offices because we associate that with receiving bad news or a place we go when bad things are happening.
There have been many studies that have looked into the psychology of color. Certain colors have an effect on people’s mood and even performance. A color can calm, excite, encourage, or even send positive or negative messages. Hospitals, especially older hospitals, could really do with a coat of paint couldn’t they? The hospital I used to go to (pictured to the left) had just updated everything and had large private rooms with beautiful wood floors. They used calming paint colors with a touch of modern design. There was art work on the walls, your own closet, fold out bed for guests, and a large private bathroom with shower. My new hospital has cold tile floors. It has old white egg shell paint that is stained and smudged. There isn’t much in the room to look at except the curtain separating you from the person next to you. The chairs for your guests were small and hard and unwelcoming. Can you guess which hospital I prefer to stay in? I noticed a serious decline in my mood at my new hospital because of those little things I missed from where I used to stay. I felt more comfortable there. I felt welcome and taken care of and my anxiety was a lot lower. Hospitals and doctors offices really need to spend more time on patient comfort and care. It makes a HUGE difference.
Anyway, now that I have gotten all that out I am going to tell you what I think is key to a good doctors office.
1. Wall art: There should be interesting things on the wall to command your attention and keep your mind off your worries. Here are some cool medical themed things I would like to see on the walls of my ideal doctors office.
Teddy and Tunes x-ray art found on badcontrol.com
H.Pill by Jamie Jeong. Society6.com
X-ray art by Nick Veasey
Phrenology head. urbanoutfitters.com
You Are Here medical poster. urbanoutfitters.com
Art made out of discarded aspirin pill packets by Akiko Diegel.
Vintage medical art. urbanoutfitters.com
x-ray art found on pepilotta.blogspot.com
2. Seating: Often once we are put in the room we are left to wait for long periods of time and a lot of the time we do that while we are not feeling well. Personally I do not like to sit there on the exam table and wait because I feel vulnerable up there. It’s also not comfortable. My ideal office would have seating that was comfortable and unique AND had more than one chair since a lot of the time patients bring someone else with them. All of these are from anthropologie.com and of course super expensive so no doctors office would really use these. But I can dream right?
3. Flooring: Obviously it would be ridiculous and super unsanitary to use carpet in a doctors office. I get WHY they use the cold tile floor, BUT…can’t we have something as easy to clean that looks nicer? I vote this
4. “Extras”: Just little touches here and there to make the room more inviting. Some interesting art, cool books to read on your disease and just other random stuff too. Maybe a funky book about odd medical practices from the past. There should be a place to hang your coat, a clock, etc.
I thought this was cool. It’s a skull made out of pills. I suppose that not all patients would like this but I do. That’s all that counts! ;)
This is a coat hanger. I like it.
Music. This gallery speaker from anthropologie.com is studly it’s it not? Music can surely have an impact on a persons mood. I think it should be a part of the office experience. Even cooler if you could choose the tunes yourself.
5. Patient Support System
Newly diagnosed patients could really benefit from this, but even veterans too. Doctors offices should have things in their room to connect patients with other patients or useful information. In our case, brochures from the CCFA would be nice. A bulletin board with local support groups, information about Camp Oasis, Team Challenge, Take Steps, and other IBD events. There should be a list of useful websites and blogs to read, etc.
In conclusion! Of course, if you put everything I just shared together the room would be waaaay too crazy and not relaxing at all. My suggestion is a calming wall color with a few statement pieces. Art, furniture, etc. And every exam room should be completely different so that each time you visit your eyes have new things to explore.
Most importantly every doctors office should have a snuggly puppy!
Another new video: 30 Things to say when someone asks you why you can’t work!
Invisible illness week came to a close last night and I wanted to share my final thoughts: All last week I saw a lot of bloggers and others talking about whether they wish they had an invisible illness or a visible one, and I suppose there are advantages and disadvantages to both. People have been saying things like, “I really wish my illness was visible because then people would really know what I go through!” But do you really want something visible like scabies, shingles, psoriasis, elephantiasis, or herpes of the eye? No. You don’t. Well, I hope not anyway. Do you want to be in a wheelchair missing both of your legs just so people can SEE that you are suffering? Probably not.
But I get why people sometimes wish their illness was visible. You want validation. When you say you are in pain or suffering you want people to believe you without them looking at you and quickly seeing that you look fine and therefore coming to the conclusion that you must be faking or over-exaggerating. It’s not wrong to wish that you looked sick so that people would take you seriously. The thoughts have definitely crossed my mind. As soon as I gain weight, the side-effects of medication subside, and I am not in the hospital or in a major flare-up, people think I must be better. I assume it’s because they’ve never lived with a life-long illness themselves and can’t grasp the term chronic. I can’t tell you how many times I go back to work after being in the hospital or getting really sick and I hear “You look great, so glad you are feeling better!” or people ask me about a new medication I am on and they assume that it’s a fix-all for my disease. Because when I look better they assume I am better and sometimes I get angry and frustrated. It’s difficult when the outside doesn’t match what is going on on the inside. But then I ask myself, why do I care? What does it matter if people don’t understand that I can look okay on the outside (I mean c’mon! I’m pretty fine if I do say so myself. Kidding! Just kidding..) but I’m still walking around missing my entire large intestine and rectum and surviving! I still take these crazy medications to get by. I still have a disease that causes ulcers, inflammation, pain, strictures, fistulas, blockages, and all sorts of horrible things. And the only conclusion I can come to is that I want validation. I want people to know exactly what Crohn’s disease and ulcerative colitis can do to you because I am annoyed that no one understands. But then the other half of me knows that it shouldn’t matter and that most people are never going to get it, and that’s okay. It’s not important to them. Not even trying to sound mean there, but it’s just not as important to them as it is to me because it doesn’t affect them. And until it affects them or one of their family members it will probably never be anything they understand, and that’s okay.
Do I really want a visible illness? Nope. Perhaps it’s a blessing to have an invisible illness. No one needs to know you have an ostomy unless you lift up your shirt and show them. No one needs to know you’ve had tubes placed to drain a fistula or abscess or that you are bleeding internally because they can’t see those things. Though there have been times I have been visibly sick from this disease, most of the time no one would know. I’m glad that for the most part my disease is invisible. I’ve made it visible in my own life through this blog and the work that I do. It’s a personal decision to let people in, and I’ve chosen to make it visible in the healthiest way I know possible and that is to write my story, to proudly show my surgery scars, to wear my “Ask Me” shirt, and to record videos. This past week is about that. It’s about bringing invisible illnesses to light so that there is more understanding in the world.
These were your responses to the question “What has been the hardest part about living with an invisible illness (Crohn’s disease or ulcerative colitis)?” that I asked yesterday on my facebook page:
"Hardest part is I always feel as though I have to defend myself to others. People see me smile or having a good time and they think I’m fine and I’m over reacting or just faking my colitis. I find it the hardest with people at work!"
"I hate how people think that this disease is just a walk in the park. As I always say to others, "You will never fully understand until you experience it yourself.”
"When people ask me to come out or help them out with something and tell me you have to get out and they keep insisting. It’s like leave me alone, if I was feeling well I would come out and have a good time or help you move or whatever. I don’t enjoy staying home sick I have no choice so respect my wishes."
"When you’re going through the process of being diagnosed you’re constantly having to go through tests that in the end it still takes so long to find out whats wrong with you and have someone treat you properly. You watch everyone else eat dairy or veggies….milk….and i love milk….and they are fine but I eat any of that or drink milk and I automatically get really sick and tired and its like i have to take a nap to feel better. i can never finish a meal, red meat hurts my stomach….sometimes i just joke saying i should just skip out on the meals and just drink ensure or something."
"It’s tiring on a good day! Just goes to show how a common cold gets everyone else, yet we are still able to get on with life even though you feel as though you’re on deaths door!”
"Being told: Why are you so tired all the time? You look fine. Are you not in a good mood today?”
"How can you possibly be tired, you havent done anything today." At least if you have a broken leg people see the cast…no one see’s a broken intestinal system and what it does to you."
"My workplace is very supportive. However, it’s hard knowing that you’re going to run out of energy before you’ve achieved all you want in a day."
"I hate the comments, "You look fine", "Wow, you can eat whatever you want and still lose weight!"
"Because UC is so varying I find it hard to explain to people that I can be fine one day and knocked out the next, and trying to explain away the exhaustion is exhausting!"
"I look normal on the outside because all I want is to make myself feel just like everyone else. So I do my hair, put on my make-up, select a nice outfit. I smile and laugh at appropriate times and hold conversations when I feel like I could fall over. I do this because the alternative is to let everyone know just how I feel and that would make me seem like a constant complainer and who wants to be around that? So people see a put-together person who seems fine, but on the inside I am bleeding. I am missing a large part of my digestive system. I have portions of my intestine that are narrow and cause pain and make it difficult for food to move through because of scar tissue. I am on strong medications that come with their own battles. My body is at war with itself. I suffer mentally from anxiety, embarrassment, constant worry…it’s all exhausting. That is what people don’t see. That is the hardest part. I am fighting and no one is there to say "way to go!" because on the outside I seem fine."
It’s Invisible Illness week and now that I am back home from the Get Your Guts in Gear bike ride (i’ll blog about that later) I am ready to focus my attention on II week. As I was browsing the internet last night on all things Invisible Illness one thing caught my eye - a video titled Who Am I Now? After Being Diagnosed. The title of the video alone struck me and I was already blogging away before I actually watched the video (which I am doing now, while writing this).
Who am I now?
Think about that for a second…
I know you have probably thought about it before. Maybe you think about it ALL.THE.TIME…your life has changed significantly since you were diagnosed with this disease hasn’t it? Do you often find yourself fantasizing about the person you used to be? Thinking about how able your body was, dreaming about a sport you used to play so well, or all the things you used to be able to do without thinking twice about it? Do you think about how your body used to work before a certain surgery you had, or what it used to look like? I know that I used to do this often, and still during tough times find myself thinking about who I used to be “before I got sick.” I spent time with a friend this past week who is a bit newer (newer? I made that word up) to being sick than I am. I have had more experience living this life and so maybe that puts me at a different stage in all this? That does not make me better or worse or mean that I have one-upped her in any way, but it made me realize that I have come a long way and that there is still room for improvement.
Here are my thoughts: Fantasizing about who you used to be isn’t healthy, though probably not always unavoidable. I admit it - I’m guilty. I think about the body I used to have and how capable it was. I miss the days that I danced, I think about how I used to go to school, work 2 jobs, and maintain a social life without thinking about it. When things get hard I get negative and wish that I could go back, or I watch my healthy friends and wish that I had their lives that they take so for granted.
There have been times that I’ve been flat out angry with life, my body, my disease…
Times where I have lost hope for a future that could be anything I wanted it to be.
Now I am able to recognize that those times come when my health is at it’s worst and I am fed up and frustrated and mentally it all becomes too much at times. Thankfully now, after so many years of being this sick, I have come to a point where I have mostly accepted who I am currently. And I know that things are always changing and that my health today is not going to be the same a month from now, or a year from now (it could be better OR worse) so I better learn to roll with the punches. I realized this as I chatted with my friend who is having a hard time coming to terms with life the way it is today. Like me, she is driven, hard working, and pushes herself. She doesn’t like to settle and maybe pushes herself too much (love you)? I listened to her talk to me about the life she used to have and I heard her question “is this my life now?” often. It’s not wrong, in fact, I think it’s completely normal to go through this. To mourn life the way it used to be, to dream of going back, to wonder what the future holds. Has our disease or illness taken away everything we wanted for our lives?
Here is my mission for you if you choose to accept it. Write about who you are now. For me it has certainly been a journey of coming to terms with what my life is now. I had to let go of some dreams I had and I had to learn to rethink the way I think. I am stubborn, and EXTREMELY driven, passionate, and maybe a leeeetle bit hard on myself. I don’t like to accept “failure” and used to have to be the best at everything. This past weekend during the GYGIG bike ride I realized how far I have come just by being able to say “I can’t” or “I need a break”. The old Sara would have beaten herself up for that. She would have thought that everyone must think she’s the biggest failure in life. She would have thought about how physically fit she used to be and what she used to be able to do and compared herself with that. Sure, she still feels bad, but she was able to recognize her new limitations and be mostly okay with them. Huge accomplishment.
Right now I can’t do some things I want to do…
In the future maybe I can?
Or maybe my health will never allow me to get to that point again.
I have to accept that because really I have no other choice than to accept it, do I? If I don’t life will be a lot harder. Some things are out of my control. Try as I might, I can’t control what medications will work or not work. I can’t control future surgeries and how they will affect me. I can’t control when ulcers and inflammation plague my insides, when I will be doubled over in pain from a blockage or scar tissue, or anything else that might happen. So I have learned for the most part to be a go-with-the-flow type of person. This is certainly not the type of person I used to be but as each year passes, and more and more happens, I realize that in the end it’s all okay. It’s okay because I am here, I don’t give up, and life is still filled with it’s good times. I have friends, I laugh, I have love in my life. In the end does it matter that I am a high school teacher, working in a salon, or doing something completely different? Does it matter what grades I got in school or how long I was able to ride my bike? I think not. I think in the end when I look back, all I want to be able to do is say I tried my best, I laughed, I smiled, and I have love in my life.
So write about who you are now. You can keep it to yourself or you can share it with me. Maybe I will share what you wrote with everyone here. It may seem a little cheesy or like you’re writing out positive affirmations but it helps. It helps to remind yourself that even though you are not doing the things you wish you were doing, that there is still so much you do. To give you some ideas - here is who I am now, after being diagnosed.
If you could pick one word or one phrase to represent the mark you want to leave on the world what would it be?
This was part of an exercise me and my co-counselor did for “Cabin Magic” this summer with our girls. I’ve been wanting to write about this ever since we did it, but because it was such an emotional experience for me (and them) I chose to soak it all in and reflect on it before I came back here to write about this. So first, I should explain what cabin magic is. Every night at camp after dinner we do a fun activity together with the whole camp or sometimes we divide the teens and younger kids up, but either way it’s a bigger group. But during cabin magic it’s an activity you get to do just with the people in your cabin, and the counselors get to plan it and surprise their campers. For the younger kids the counselors usually plan something really light-hearted like a movie night, or taking them out on the boat and letting them eat snacks, or doing a “princess party” for the little girls. For the teens we get to be more creative and the goal is usually to make them cry. That sounds mean right? I don’t mean we do something awful and make them cry, but rather we try to come up with something that will really challenge them, take them out of their comfort zones, or open up in ways they normally can’t out in the real world. We want them to feel safe and united as a cabin unit with us as their leaders.
I’ve never cried during a cabin magic before, I have shed a few tears, but never flat out bawled my eyes out like a baby until this year. Maybe it was because my emotions were already running high - I mentioned in a blog earlier that my co-counselor last summer had passed away over the fall and this was our first summer at camp without her. That is all I want to mention about that, but I felt I had to mention it so you can understand just where my mind was this year. It was focused on loss, friendship, relationships, being thankful, and so many other things during the week at camp that it was both emotionally draining but also freeing. For our cabin magic we walked them out into the woods and told them they were not allowed to talk but had to reflect on the week and our time together. As we walked I took my own time to reflect on the week and this is where I really soaked in camp. I breathed in it’s air so it’s scent will never leave me, I felt the sun on my shoulders, I took in all the beauty of the trees, the trails, the water. I thought about the week and what a great group of campers I had, and how much we had come together and grew personally. I thought about how lucky I am to get to come to camp and reflected on my own health journey. I thought about Katie and her energy being there…we walked…and walked…and I thought…and thought…until we arrived at a place in the woods near the creek.
This is when we put paint on one of their hands, gave them a marker, and told
them to go leave their mark on the world. Our campers were the oldest kids at camp and they are entering a part of their lives where they are going to become more independant and responsible for themselves and their actions, and we wanted them to start thinking about that and start thinking about how they want to impact others. Once we explained the exercise we let them find a landmark of their choice to leave their hand print on (their mark) and then write the word or phrase that represented what mark they wanted to leave. As I walked around and chose my landmark I started to think about words that could represent the mark I want to leave on the world. Different words circled my head (inspire, educate, empower, etc.) until I came up with connection. That was my word. To be honest, I thought a lot about you guys. You who read my blog and watch my videos. Though I hope to achieve a lot of things, like educating you and others about IBD, empowering you, inspiring you, or helping you accept your disease and feel confident in yourself, the thing that stuck with me most was the word connection. I want you to not feel alone. I want you to feel some sort of connection with me or with others here. I want everyone who comes in contact with me to feel a connection and from that connection I want them to go forward and do something better because I did inspire them, educate them, empower them, or whatever. That is the mark I want to leave on the world. This extends to other things in my life too. Whether it’s clients I come in contact with at work, friends I have, people I love, all my relationships - I want people to feel some sort of connection with me. Because once someone feels a connection then people are more likely to open up and real relationships are born.
This of course was not the part of cabin magic that made me cry. This was the part that challenged me to think. Once we had all left our mark on the world we came together and shared with each other what we chose and why. It was the next part of our exercise that made me cry. We had them stand in a line and again we put paint on one of their hands and told them to leave their mark (hand print) on the person next to them and then share with that person how they had impacted them. This was where the “magic” happened. I watched girls who hardly knew each other in the beginning of the week say such touching things to the person next to them, I watched girls who had been coming to camp for a long time and were friends for years share with each other how much they meant to one another…as each person took their turn to leave their mark on the person next to them I watched tears fall as they encouraged each other and pushed each other to be their best. There were tears all around as they talked about camp and who they are when they are at camp and how they feel, tears as they talked about the person next to them, tears about so many things that I will keep personal between me and my cabin. SUCCESS! But still, I was not crying. I was not crying until my co-counselor left her “mark” on me. I cried because she and I have been through so much together this past year and once she started talking about that and how she wouldn’t have wanted to go through it with anyone else I just lost it, and even though we don’t have to speak a lot about what happened we just “know”. As we left our hand prints on each other I thought not only about my friendship with her, but my friendship with all of the other counselors at Camp Oasis. I thought about the connection Blake and I have through Katie and mentioned how she had left her mark on us both. The word connection was so fitting here as well as I thought about my connections at camp. At camp we are all connected through our disease, we are connected through camp and what it means to us, and we are connected through the friendships we make with each other. I can’t really express why this cabin magic was so emotional for me without going into much detail and I want to keep that detail to myself because it’s personal. After all the tears and all the mess of paint being all over us we ended our cabin magic on a much happier note. We built a fire and ate some smores and spent time together as a cabin. It was by far my favorite cabin magic.
So tell me, what word or phrase represents the mark you want to leave on the world?
New Video Blog!
Chronic disease and feelings of guilt/failure.
You guys, I’m angry.
If you know me, really know me, then you know that I hardly ever get angry. In fact, most of my friends are always hounding me about how I need to be meaner, stand up for myself, pretty much grow some balls. I may not be good at standing up for myself most times but when it comes down to the people I love, I have no problem standing up for them.
The reason I am angry has to do with my friend Amanda. This girl is incredibly intelligent, a brilliant writer, she’s beautiful on the inside and outside, and she is so giving of herself even when she needs so much. I can tell just from talking to her that she has so much passion and drive and that if she could, she would be out there showing the world what’s up.
But right now she can’t,
The frustrating part, and the reason I get so angry and personally involved/connected with what she is going through is that my health journey has a lot of similarities. You guys, people are telling her that it’s all in her head. They are telling her to just stop acting this way and go back to living her life.
Do you know how messed up it is to suffer and then have people tell you that you’re making it up? That screws a person up! I know from personal experience. Amanda, well, she reminds me a lot of myself. I’m a very driven, passionate, smart person too. And there was a time when my doctors were telling me it was all in my head, or suggesting I “talk to someone”, and then that I was drug seeking. My pain and suffering was terrible and when no one believed me…I don’t even know how to find the words to even begin to tell you how hard that was. What was worse was after hearing it for so long I would sit there and think to myself things like “maybe I am making it up?”.
I was there, laying in a hospital bed for months experiencing the worst pain I have ever felt in my entire life every second of every hour. I yearned for sleep just to escape the pain but sleep barely came because I was in so much pain that my body hardly allowed me to sleep. It got so bad that I just wanted to die just to end the pain. It’s a horrible thing to admit and I even get a little nervous writing those words out here on this blog for the world to see. I talked about it once on a video I did, but still, it’s a touchy topic for me. But truth is, I wanted out. People were telling me I was making it up and they were no longer taking me seriously and therefore stopped looking for answers. The worst part of all was not being taken seriously. Did they think I LIKED this? Do they think Amanda LIKES this? NO. I just wanted answers. I wanted a solution, a fix, ANYTHING, so that I could go back to living my life. I wanted to be out there being the driven girl that I used to be but I couldn’t do that until they fixed my pain.
It turned out that I just needed a new set of doctors. I was told “it was all in my head” for three years. My doctors (because they stopped taking me seriously) stopped looking hard for the answers. They got lazy. Until one day I had had enough and I went to a new hospital with new doctors and that is when I finally got my answers. But the damage done in those three years I am learning is permanent. I still have a hard time telling my new doctors what is going on with my health because I secretly wonder if they think I am a liar. I still have a hard time trusting them, and I have a hard time talking about my pain because I think they will think I am drug seeking when that is clearly not what I am doing.
I don’t even know how to describe how much it messes a person up to be told “it’s all in your head” when they are actually suffering. Like me, Amanda just wants answers. She wants to stop suffering and she wants to go back to living her life. Amanda (like my friend Marissa) has become a very good friend of mine. It’s so nice to have people to talk to who know exactly what a certain situation feels like. I just want to scream a big YES every time I talk to her because she gets it. I know that her and Marissa tell me that they are thankful for me because I have helped them, but truth is that the two of them also help me in huge ways too.
So today I am angry for my friend because what she is going through takes me back to my own struggles. I so badly want to fix this for her but I know that I can’t. Hopefully I do a good job at being an understanding friend and a listening ear. Girlfriend, don’t give up! You will find your answers, you know who you are, and you will get to the bottom of this.
(You can visit my friend Amanda’s blog at http://stopthinkingstartwriting.blogspot.com/ she’s pretty amazing!)