Tagged: chronic illness
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.”
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!
Have you had people tell you they are happy you’re feeling better because you look great?
How does the comment “you look great” make you feel anyway?
Have you heard the ever familiar “you don’t look sick?”
What does sick look like anyway? I discuss my recent feelings towards people telling me I look great.
To have any chance at living a normal life I must spend my time at the hospital every 7 weeks getting an infusion with other patients who need life saving medication or blood transfusions. It’s still weird to me. To look a me with my hair and makeup done looking like a normal person, and yet I am sick.
Crossing my fingers and toes that myself and everyone else I know on biologics never face the terrible side-effects possible.
This is my remicade infusion from the 19th of February. Next one due April 9th.
See I told ya! I am so behind at getting things up on this blog.
So you have Crohn’s disease or you have ulcerative colitis. When I tell people the physical things I have gone through they are shocked. The blood transfusions, the IV feedings, the surgeries, hospitalizations, etc., all seem brutal, and they are. But the physical things for me are so much easier than what the disease has actually done to me as a person.
Do you agree?
Take for instance surgery. Many of us have had complete intestines removed or even more than that. Some of us less. The physical part of my surgeries were grueling. The first surgery alone to remove my entire large intestine and rectum which was so diseased. But then to take my small intestine and reconstruct it and attach it to a different area of my body. And then to create an ostomy by attaching another part of my small intestine to an opening in my stomach. THAT was a lot to handle. Waking up with a wound half the size of my torso and also an ostomy bag attached to my stomach…
The physical wounds heal.They heal a lot faster than the emotional wounds. The pain goes away. It is how the brain psycologically handles having an ostomy or jpouch that is harder. My body looked different. It behaved different. Do we hate it? Do we love it? Will someone love us? Will life always be this way?
Think about medications. It’s easy to swallow a pill. It’s not that hard to sit for 2 hours with an IV in my arm while I receive an infusion. Hell, even injecting myself with medication isn’t that bad. But what medications do to us is where it hurts. I take remicade. People can get lymphoma from remicade! People risk getting serious infections from it. My immune system is suppressed, I must be careful around sick people. That makes me feel “different”. Methotrexate can cause all sorts of nasty things to happen. It’s freaking chemotherapy! What about the prednisone almost all of us have taken? It’s the weight gain, the insomnia, the moon face, acne, joint pain, hair loss, infections, cancer, etc. that we have gotten or can get that is the real hard part about taking medication.
Don’t get me wrong, the physical part of this disease is beyond awful, there is no denying that. But the lasting impact it has on who we are as people can sometimes be harder to heal from. I like to think that I am a strong person. I think that in spite of all that I have been through and will go through that I have managed to find all the positive in this that I can. In a lot of ways I have learned to like myself more because of my disease. But now, as a leader of this community and interacting with so many of you on a daily basis, I see patterns. I hear the same stories over and over of fear, embarrassment, pain, depression, and anxiety. I don’t often get emails about the physical stuff. I get emails from lonely people who need someone to listen to them. Someone to understand. You are tired, but you are not just tired from the physical. You are mentally exhausted. You are living the lives of people with a chronic illness and that takes a lot out of you that no one in your lives can understand unless they have been through it themselves.
There is a silver lining to all of this but the difficult parts should not be ignored. The difficult parts are why we are all here. This blog exists because I know that there are others out there who need support. It is here so that you don’t have to feel so alone and it is here to help me too.
There are those of us who have grown up with this who have never learned how to grow into real independent adults.
There are kids who are too sick to go to school. Their friends tease them and ask them questions because they miss so much or because their face is puffy from steroids.
There are teens in high school and young adults in college who have been forced to grow up too soon. Worrying about things that young people shouldn’t be worried about.
There are boyfriends and girlfriends fighting with each other and husbands and wives divorcing. Parents who are struggling financially and children feeling like guilty burdens.
We worry for what the future has in store. We have anxiety that spirals out of control. We wonder if anyone will accept us for who we are. We hope our friends don’t forget about us when we are constantly cancelling plans or are away in the hospital. We go through depression. We face crippling anxiety. We isolate ourselves. We battle self-esteem demons when our bodies drastically change due to surgery, medications, weight fluctuations, or a combination of all three.
And this is only touching the surface on all the things that you or I have felt. And though that all just sounded like a bunch of negativity it’s real. You might not be going through this right now but you probably have in the past or will again in the future. We have all been scared.
I can only be real with you. I have said from the beginning that I am honest and real. Therefore it isn’t positive all the time because I’d be a liar if I said I haven’t struggled with all the same things you struggle with. I am positive no doubt, but I am also real. And being real means telling you that these things affect me too. That even with as positive and self-assured as I am that I still go through this.
What do you think about all this? Is the physical harder than the other stuff? Or is everything else where the real pain lies?
Have you ever felt trapped?
I have once or twice or a gazillion times. Disease is trapping. It feels like a loss of control because there are so many factors in your life that you simply can’t control. Do we cling to the things we can?
In conversations with my friends online this afternoon the theme has been trapped. Me, my friends, we are trapped.
A friend on disability who so badly wants to work again but is in the hospital too often. She wants her life back. She DESERVES her life back. Disability that is a blow to her pride after working a great job for 10 years. Me and this friend we talk, and we both share the same trapping feelings. I too applied for disability in the past but never followed through because of my pride, and so instead I just sat here for years hoping to get better and not receiving assistance. Stupid. Every now and then I would get back to work but never working enough hours to make much of a difference and soon I would be sick again. Trapped. Both of us both needing of it, deserving of it, but not wanting it. Both wanting so badly to work because we just want to go back to our normal lives. I am working now… Both feeling like if we did get disability then we would have to stay on it because if we did go back to work then we would lose our disability and our health has been so unstable that of course once we got back to work we would get sick again and then be without the disability we just had. Trapped.
A friend who lost her house and her job and all that she worked for and at my age is back with her parents. All she wants is medication. She needs it and she deserves it. But she gets denied. Trapped. What is she to do now? How much more does she have to lose? How is she to afford medications that cost thousands of dollars? She feels trapped.
A friend who just got laid off from work after 3 months of fighting with HR to get her FMLA papers. They said it wasn’t because of her health but… Trapped.
I have felt trapped so often it’s crazy. And now what I do is I ignore it. I ignore so much and pretend it doesn’t exist because it’s easier that way. I’ve been doing this for years, it’s my coping mechanism. Yes, I know it’s not healthy. I scare myself sometimes with how emotionless I can be. But years of trauma hardens you in ways. I’m working on it, promise.
Me? I need to file bankrupt. I have millions in medical debt from the first time I didn’t have health insurance and went through medications, doctors appts, and six months in the hospital with 2 surgeries. My debt keeps me from being able to have bank accounts, credit cards, or anything really. But my pride gets in the way and I get paralyzed and can’t apply. I don’t know why, I have no good explanation, but I can’t. I kept telling myself that I would apply when I knew that I wouldn’t rack up anymore medical debt. And here I am now just having lost my health insurance again and sure to acquire more debt. Trapped.
My remicade infusions cost $10,000 and now I have no insurance. I am supposed to get them every 7 weeks but with the loss of insurance had to wait 13 weeks to get assistance for that last infusion I had. I got sick.
I am trapped. Trapped trapped trapped. I need to see a doctor now because the 13 weeks without my medication bumped me out of remission but I can’t see my doctor because I have no insurance. Trapped. I am scared the longer I remain uninsured the sicker I will become, and then I have to stop working again. That is the last thing I want. Trapped.
If I stop working again I lose everything I have been working so hard for in the past few months. Trapped.
Why isn’t it easy? Why can’t it be easier?
I trap myself too. Not on purpose, but I know that I do. I have thoughts that trap me from reaching my fullest potential. I tell myself that I don’t deserve nice things or nice people in my life because I have nothing to offer. Who wants a girl with no health insurance, bad credit, and a disease? I know I am being silly and I know that I am beautiful, smart, driven, and passionate but I can’t say that those thoughts don’t cross my mind.
I feel scared a lot. Trapped a lot. I want nothing more than to work hard and succeed. I want that so bad. I know that all of my friends want that because we hate being sick. The last thing on earth we want is to be in the hospital or at home with little quality of life while we are forgotten about by friends and family who are healthy and out living their own lives. Right now, today, I feel trapped.
One foot in front of the other…
Tomorrow is a new day.
It started with happiness. With energy. With relief.
I remember sitting in my hospital bed and for the first time in many months feeling relief. I was hooked to a pain pump of dilaudid and for the first time in months I wasn’t in pain. I recall laughing and conversing with the people that came to visit me in my hospital room dropping off gifts for me to spend my time on. Coloring books, crayons, puzzles. In a way I regressed back into a child. I was scared, weak, tiny, and in this big place where finally people were there to take care of me. I could breathe a sigh of relief. I would sit in my hospital bed and color pictures or play with play-doh as if I were a child passing the time, and I was glad to have nurses and doctors trying to make me better. Things are going to be okay I thought.
It was all fake. The new “energy” that I felt was just high doses of steroids being given to me through my IV. It was the three blood transfusions I had received since I had lost so much blood by then. It was the IV nutrition trying to replenish the lost nutrients. In truth I wasn’t getting better. The steroids were not working, the transfusions didn’t really raise my blood levels, and the TPN feedings were…well, at least they were helping a bit. But no matter, I was happy there in the beginning. I was hooked up to this and that and things were going in and out of my body and just for once it felt good to have more than just myself taking care of me.
The months prior to those six months I had barely held on. My life was stolen from me. I am in every way a driven, motivated, competitive person in a teeny little blonde girls body. If I am told that I can’t, I do everything to prove that I will. So when my sickness caused me to fail the whole semester, quit my job, and move back into my parents house I was devastated.
Why did I have 3 blood transfusions? Because every day, without fail, I would stand up from the toilet and stare at a bowl full of blood. A clear sign that my large intestine was bleeding so bad and was so inflamed. The blood loss caused me to be anemic and extremely weak and tired which resulted in my fun life dwindling down to laying in bed and making trips to either the bathroom or the kitchen. The pain was pain that I never knew could exist and it was there every single day. I was so tired of the pain, and from the pain. I was also going to the bathroom on average 15-20 times a day but at my worst I counted 52 times. 52 times in a day that I stared at my blood loss staring back at me. During the night I would experience high fevers and usually after making several trips to the bathroom I would come back to my bed freezing cold and sit there and convulse because the pain and the fever made that happen. Once I finally fell asleep I would get night sweats that were so bad it was as though someone had thrown a bucket of water in my bed from sweating out the fever. Then I would wake up the next day and do it all over again. The medications that were not working, the pain, the fevers, the shaking, the laying around watching my life go by.
I was 95 pounds. I was bleeding internally. I was in excruciating pain. I had fevers. I couldn’t walk sometimes from the arthritis that often comes with IBD. I was having accidents.
That, for a young girl was terrible. To me it was the end of the world. I couldn’t tell anyone. HOW could I tell them that blood was coming out of me when I used the bathroom? How could I tell them about the pain, the fevers, the accidents, the medications, etc? I was so embarrassed and so alone. I was so so so alone.
And ashamed. That too. I don’t know why I felt ashamed, but I did.
Sick. Embarrassed. Isolated. Disgusted. Ugly. Scared. Alone. Ashamed. That is what I was. I was no longer a college student on my way to becoming a teacher. No longer a driven, smart, successful young woman. No longer a talented dancer. No longer pretty. I was nothing in my eyes if I had this disease.
So after months and months of being sick and all these failed medications I was hospitalized. And in the beginning I was okay, until the strong IV steroids were not helping, my white blood cells were still too high and my blood levels still too low. They say, it’s time to talk to a surgeon Sara…
Enter Doctor F. He explains to me my options as far as surgery. I had three and they all involved removal of my large intestine. Either take out the large intestine and rectum and go for a permanent ostomy, take out the large intestine and connect the small intestine to the rectum, or take out the large intestine and rectum and create a ileo-pouch (j-pouch) out of the small bowel and connect it to the anus. Option 3 was the winner. Doctor F explains what life should be like after surgery. I am told things like since you have ulcerative colitis (I didn’t. I was misdiagnosed and actually have Crohn’s disease but they didn’t know that back then) that you will no longer have to take medications anymore. You will no longer have to worry about being sick like this. You will live a good life. You should feel better as soon as you wake up from surgery like most patients do. They stop feeling sick, they are relieved because the diseased organ is gone.
Fast forward a month later. I didn’t get out of the hospital in a weeks time like I was supposed to. I didn’t feel better like I was supposed to. I had this ostomy bag now. I could see my small intestine, right there! Right there sticking out of my stomach. My insides were sticking out of me and I at first didn’t know how to adjust. I went through a little depression, panic about what clothes I would wear, thoughts about my future that was now sure to be lonely because no one would ever love me like this. It seemed as though nothing was going the way it was supposed to go. My ostomy output was so fast and liquid some nights that I literally had to set my alarm clock on the hour to wake up and empty the bag or it would burst. My family was falling apart. My brother was away, my mom was trying to hold it together and visit me but all I could do was yell at her because I was depressed and angry and took it all out on her. My sister was young and scared and wouldn’t come visit me and my dad was away for long periods of time working. In some ways it brought all of us closer together, but in so many other ways it drove us to our limits. Illness hurts family in so many ways.
I was supposed to be getting better but my pain was worse. It was scaring me because it was even worse than before I had surgery and this time pain medication hardly helped. I needed a break from the pain so badly because it was keeping me up at night and causing me things mentally that I don’t even know if I can ever explain. All I remember is just wanting out. Wanting to have a test where they would put me to sleep so I could escape, wanting another surgery so that I could have anesthesia and be knocked out, wanting to die. I just wanted it to end so badly and sometimes I wished for death. I wasn’t supposed to have my 2nd surgery to take down my ostomy and start using my j-pouch for three months but I was progressively getting worse. I was back on IV feedings and in constant pain. Soon I was in even worse pain and was constantly throwing up large volumes of bile. It was decided by my surgeon that we had to get me into surgery to fix the problem and that we would take down my ostomy then to see if maybe I would do better without it and just start using my j-pouch early.
So around month 2 in the hospital I had my second surgery where we found that adhesions were strangling my small bowel and that was causing the extreme pain and constant vomiting of bile. Again I was told that things would get better now and I lied to myself and tried to believe that it was going to get better. Doctor F tells me that most of his patients who have a j-pouch go to the bathroom a lot more in the beginning. He says to me that my body will take awhile to adjust and that I can expect to use the bathroom about 7-9 times a day and maybe even 1-2 times at night. Me? I don’t go to the bathroom at all. For days I can only just hardly use the bathroom or on a good day I go 2-3 times. This has doctor F stumped and we discover that I have a motility disorder. Then he says we will try a catheter and see if that helps drain my j-pouch because I must be getting backed up.
So now I am around 90 pounds and I have a tube coming out of my behind. Because of said tube I had to wear a hospital gown with no underwear on because how can you wear underwear over a large tube? Nurses had to empty the waste that the catheter collected. I was mortified. My dignity near gone. The pain? The pain was still there.
Month three. One day I am laying in my bed with my mom by my side and I start convulsing out of control. In no time nurses were being rushed into my room and I was being covered in an ice blanket. I wake up 3 days later in the ICU not remembering what happened in-between. Turns out I had spiked a fever of 105 or 106 and was rushed to the ICU because I had a terrible blood infection from my central line.
Month four. My tooth chips. The first of many due to years of malnutrition, steroids, and vomiting taking it’s toll on my teeth. I lay in bed running my fingers through my hair pulling out clumps. It’s mechanical. I don’t even care, I do it to pass time. I throw the hair balls on the floor and admire how much is there. I have been wearing adult diapers at night because my body was not used to missing it’s large intestine and it didn’t know how to work. I was so weak and in pain that someone else always had to clean me up and put me back to bed.
Month five: Someone had been doing everything for me for a long time by then. I was showered, dressed, and cleaned by a nurse or a loved one. I wasn’t eating at all but still being fed through my IV. My family eats Thanksgiving dinner in the hospital cafeteria while I watch them because I am still unable to eat. To make matters worse in my family my uncle had recently been diagnosed with brain cancer and had brain surgery and was put down the hall from me in the hospital. I hardly turned on the lights anymore in my hospital room, I was so depressed. I was tired of the doctors, nurses, and hospital staff waking me up at all hours to draw blood or do vitals when I had just finally caught a wink of sleep. I was tired of the pain and the way that this shook my family and friends. I told everyone to stop visiting me and was a jerk to anyone who did. I was just scared. Scared that I would never get better and that the rest of my life was going to be this way. I knew that I couldn’t live like that. I couldn’t take the pain for much longer. Nurses started to try and cheer me up by doing my hair and makeup or pushing me in a wheelchair around the hospital.
Month six. Month six not much happened. They were trying to get me off IV feedings and off pain medication. I was working with a pain management specialist and really just existing in the hospital for the TPN and the pain meds. My days consisted of someone pushing me around in a wheelchair or me wandering around by myself. It was December and my room was ready for Christmas and then…I went home.
I went home and I got worse. I lost more weight and I slept for hours and I still wore adult diapers at night. But over time I steadily got better. That is a small part of what my six months were like. I don’t know if I have ever described them besides just saying I was in the hospital for six months. I try not to scare others who are going to have surgery but I do want someone out there that has a lot of complications to know that they are not alone. During all of this I didn’t have friends like I do today who have Crohn’s disease or ulcerative colitis. I didn’t know anyone and I was so embarrassed about all of this that I lived it by myself. That is something I try to prevent for all of you. I don’t have a nice ending for this blog, I am tired and need some sleep.
Goodnight my strong friends.
December 22nd. It’s one of those dates. We all have them, dates that we remember. Anniversaries, birthdays, deaths…
I remember a lot of dates that relate to my health. I’m sure you do as well. December 22nd was the date that I was finally released from the hospital after six months. I remember it very well, this time I could tell something was different. This time I was going home and it was going to be for good. Before that I had been there six months. I did get discharged a handful of times but came back within a day or two, or a few days tops. This time I knew that I wasn’t coming back, but that didn’t mean things got immediately better. I didn’t come back, well at least not for almost a year.
I believe I shared this photo before. I don’t have many from around that time because I avoided cameras so I end up having to share the same photos over and over. This is probably one of the worst pictures taken of me. My hair had been falling out for months in the hospital that it got so thin that all I could do with it was stick it in a pony tail. My skin was pale and though you can’t tell, I was very underweight.
You know how certain memories just stand out more vividly than others? This one is one of those. I can recall scents, clothes I was wearing, even thoughts that I had. I can put myself right back in “her” body. By her, I mean me, but I am no longer the person that I was then. I for some reason don’t even feel connected to her because that whole time was so traumatic for me that I think I have somehow tried to block it or escape…the mind is a tricky thing in the way that it protects itself.
Anyway, I was so weak. Packing up my hospital room was almost too much. Just typing that amazes me. That standing up and gathering the things in my room was such a hard task. But I remember it, and it was. Plus, I was gathering six months of stuffed animals, coloring books, magazines, games, etc. that people had brought me as gifts that I hardly even touched while I was there. I felt scared to step out into the real world without the hospital…I actually felt safe (or something) there. So there I was all of 80-something pounds trying to pack my things and thinking about life. What would it be like now? I was still so sick. I was still in so much pain. I had just come off intravenous feedings after months of being fed through IV and would have to actually eat real food. Scary. After my surgeries I didn’t have it so easy with my j-pouch (obvs. six months in the hospital tells you that! haha) and I was experiencing incontinence at night almost every night. I was skinny and in pain and worst of all, having to tell my mom what kind of adult diapers I want her to buy me. If this doesn’t take you to low of all lows, I don’t know what will. If that doesn’t make you feel ugly and attractive, congratulations to you, but it sure made me feel that way.
It was Christmas time and I had decorations all over my hospital room. I had gifts that hospital staff had given to me. I had become used to my routine of walking down to the gift store where I would buy a few mini reeses peanut butter cups and that was all I would eat for the day. Now it was time to leave. I remember the walk to the front where I was being picked up and how it was the first time I had felt cold air that whole year. It was snowing, there were people out there, this was life. It was going on all this time while I had been in that building. That felt strange. It felt strange that I had entered the hospital in early July when it was summer and I was leaving when it was snowing. How did this happen? How was this my life? How did six months go by and all I did was suffer the entire time?
What do I do with all this medical debt? Will I go back to school and become a teacher? What if my body never starts working right? What if I am always in this pain? The pain! I am so tired of the pain.
December 22nd I got out. I lost more weight because I didn’t have my IV nutrition keeping me hanging on and I was throwing up a lot of what I ate. I slept hours upon hours because my body was so weak and tired from all it had been through and really needed the rest to recover. My hair was thin and hardly there and I had no color to my skin. I tried so hard to go out with friends but would be in so much pain that I would have to leave or I would get sick and throw up.
Somehow though after about another month I started being able to eat more and I grew strength back steadily. I learned how to use the muscles in my body again to climb stairs and have the strength to take showers and get ready. Within 3 months I found a part time job where I work now. Those people never knew where I just came from. I didn’t have this blog and I had never been to camp oasis. I started a new life and I moved on. In a way December 22nd is like a birthday. It’s like a new beginning. It’s to me, the day my life began.
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.