"We will walk to the edge of the earth with you, because we need you to be willing to carry us to the edge of the earth when we are too weak to walk along." I wrote this in my last entry, while I was deeply struggling with my decision to hold on or to let go of my 5 year relationship with my fiancé. I painstakingly made the decision to let go and choose myself! This is really the first time, since my diagnosis in 2005, that I face my battle with Crohns alone. While somewhat scary, I am rather excited to embark on my new solo mission! I am older now, wiser and still so eager to learn and grow. Now this isn't to say that I will always be positive and upbeat, but I will ALWAYS grow and learn, even in the midst of the little battles that I lose. I choose to love, respect, cherish and value myself and I hope that if there is someone out there reading this, while struggling with an unhealthy relationship, that you make this day the day that you choose yourself as well! It's not easy; I have moments of hurt, anger, resentment, sadness and of course, missing him. I have given into some of these moments, but letting myself feel the full range of emotion is helping me to face each element, so that I can let it go, forever. As I reflect back, I realize that not everyone is capable of handling this disease. What do I mean by this? I mean that living with someone who is chronically ill requires great sacrifice, understanding, compassion and a selfless, humble heart. It means having to put someone else's needs before your own, time and time and time again. It means extra responsibility. It means being a shoulder to lean on and an ear to listen, as we vent and get it all out. It means being a cheerleader and a motivator. It means way too many doctor's visits and ER trips in the middle of the night, uncomfortable procedures and surgeries. It means working hard all day long and coming home to no supper and a messy house while your partner lays in bed and doesn't even look sick. It means picking up that slack and then putting down the frustration that comes along with it. It means looking beyond the disease, loving through the disease and no matter how hard it may be, it means never losing sight of the value of the heart in front of you. I could keep going here, but the point is, that not everyone is capable of being this kind of a rock to someone else. Some people are only capable of love to a certain extent. That's not to say that they are a bad person, but that's also not the person that we should journey along with. We (the intestinally challeged), need to recognize the entirety of our situation and if you have a partner, ask yourself if they are truly a good fit for your situation. First and formost, negative stress is the WORST/BIGGEST trigger of our disease. Everything that goes straight to heart, also goes straight to the gut. If you are in a toxic relationship, you are not only allowing yourself to be hurt, you are KILLING yourself. Whether we want to acknowledge this or not, many people, of all ages, have lost their battle with this disease and this will continue until we find a cure. Some people still think that our disease is no big deal, that it just means that we need to change our diet. You need to know for yourself how big of a deal this is and not allow someone (especially your partner) to tear you down for what you have no control over. This disease impacts not only our intestines but other organs too. When your body isn't absorbing nutrients, it impacts the entire body and your organs aren't 100% healthy enough to work properly. Negativity and stress induce flares, which lead to malabsorption and malnutrition which affects the organs, as well as causing blockages, strictures, fistulas and can eventually lead to death. Recognize this and be proactive about this. We only get one body. Diseased or not, it is our job to make sure that we push this body as far as it will take us for as long as it will take us. Having a partner is a wonderful blessing. It truly does make it a million times easier to face the daily battles when you have someone to face it with, but there's a flip side. Do you know what is worse than facing your disease alone? Being with a partner who doesn't get it, (whether it be ignorance or just plain cruel intent) and takes the disease and uses it against you, making you feel lonlier than before, that you deserve every bad thing and that you're a horrible human being beacause of the things outside of your control!! You suffer enough as it is, so love yourself and believe in yourself enough to know that you can face this disease on your own, versus additional suffering because of another. You deserve a partner who will be there for you, willing to lend their stregnth to you when your stregnth is depleteted. You deserve someone who will make you smile and laugh, when all you can think about is curling up in a ball and crying. You deserve someone who will take some of the hardest moments of your life and turn them around into beautiful memories. Now, if you want a worthy partner, this means you must be a worthy partner in return.... Everyday, look in the mirror and get real with yourself. What is one thing that you can change about yourself today? Start small, but do it! Baby steps will turn into leaps and before you know it, you will be the absolute, best possible version of yourself and you will attract the same in return. Recognize that you are a strong individual and embrace it! Every person who suffers with this disease has undeniable stregnth. We may have been forced by the disease to find our stregnth, but all that matters is that we found it. So take it and apply it to other areas of your your life as well. If you are single, start thinking about what is that you need from a partner. Talk about this to your potential mate from the very beginning. Like I said above, not everyone is capable of taking on such a responsibility. What is the point of allowing yourself to feel for someone if you ultimately know that they are unable or unwilling to take on such a task? Talk to your potential mate about it before you allow feelings to develop. Stop following your heart and start leading it. Be your own advocate, be self-aware, be strong and as always, be encouraged and be encouraging!
Pain changes a person. I can speak for hours about the negative impact (and I will in the future), but today I want to focus on the positive aspects of pain. Some of the most incredible, inspiring and selfless individuals, that I have ever known, have been chronically ill. Now, I'm not saying that we are all this way, because there are many out there, who are still bitter and struggling to come to terms with their illness, but think about the ones who who have accepted this for themselves. What do you see in them? I'll tell you what I see- I see someone who will give you the shirt off of their back, even if that shirt is the only thing that they have in this world. I see someone who will rush to be by your side and do whatever they can, just to see you smile or to make your day a little easier. I see someone who will go up to bat for someone they don't even like. I see someone who will research your symptoms and make your cause their own cause, advocating on your behalf. Why is this? Remember when I said that pain changes a person? Well THAT is your answer. When you live with daily pain, that disrupts everything that you thought you knew about life, you begin to see things differently. You begin to realize that you took everything for granted, up until this point. The statement, "You never know what you have until it is gone", is no longer a phrase, it is your life. With that being said, long-time sufferers are fully aware of just how bad things can be, how bad the pain truly get and just how low the low points can get. Many chronic illnesses, Crohns disease being one of them, are dubbed "invisible illnesses". People have a hard time wrapping their brains around they can see in front of their face, much less what they are unable to see with their own eyes. Because of this, many suffer alone and in silence! When you have suffered alone for so long, it crushes your soul to see another suffer in this way, so we automatically reach out to them. We reach out because we don't want to see another person hurt the way that we have hurt. There are forces and experiences in this life, that are bigger than us, big enough for us to step outside of our comfort zone to be to another, what another wasn't to us in our time of need. The positive doesn't just reference the way we interact with others, but aspects of our personal daily lives too. There are still many bad days but the good days are phenomenal! I'm talking about bouncing off the walls kind of phenomenal! A boring, uneventful day without pain or symptoms, is like a day at Disney World! I'm smiling, I'm dancing and twirling and acting like a fool and happy doesn't even begin to describe the feeling. We take more pictures, way more pictures - We want to capture and remember every detail of treasured moments. In fact, we have WAY more treasured moments than most, because we are able to find and see the beauty in moments that others would overlook everytime. (The same things that we would also overlook if it weren't for our own struggle). We look beyond the surface. We know, all to well, what can lurk below, so we look beyond a smile and we look INTO the eyes of others! There are many ways to mask pain, but if you truly look into someone's eyes, you will see the full story that lies beyond words and beautiful smiles.
We love harder. I'm not sure if it is out of fear or greater appreciation or maybe a combination of both. When we love someone, we love fully, unconditionally. We recognize that in order for someone to love us, they have to look beyond our disease and be willing to sacrifice in many ways to be our partner. In recognition of this, we know that if we want them to love us uncontionally, we must love unconditionally in return. We will walk to the edge of the earth with them because we need them to be willing to carry us to the edge of the earth when we are too weak to walk along. We watch them as they take on our slack and it makes us love them deeper. We study their smile, the twinkle in their eyes and the sound of their voice. We memorize everything about the little moments, when their laughter makes you forget everything else, like it never even existed. Those moments save you and ultimately, their love becomes powerful enough to make you feel alive, even in your worst moments. Once you find it, you don't want to let go because the journey is hard to face alone and because they make you feel like you again, when "you" had been sucked dry by the disease. Just as I can go on for hours about the bad side of crohns, I can go on for many more about the good. We analyze and reflect often, We say, "We're sorry" from a humble heart more often, we live for the good days and we celebrate them when they arrive. There are so many other wonderful things I could mention, but I will leave you with this. We are stronger and we know it. If we can survive this with a humble heart on a daily basis, then we can face and overcome anything!! Be encouraged and be encouraging!! [And thank you to everyone who has taken the time to come and read this. Thank you believing in me and giving me the opportunity to show you my heart] As I sat down yesterday morning to write, my words took on a direction of their own. Before I knew it, I was revealing the darkest secret of my life, my decision to check out! I planned to leave it with that entry and only talk about it if someone who is struggling came to me and wanted to talk about the subject!! As evening approached, news of Robin Williams began to spread and everyone seemed to have an opinion and I knew it was my time to speak up. You see, there is power in our mistakes- two kinds to be exact: Negative power and positive power. The negative power creates consequences and chaos for ourselves as well as the ones we love. The most damage is done in the immediate wake of the discovery of our mistake. The negative power is a given, it's an automatic; it is what ends relationships and friendships, causes the happiest of people to cry themselves to sleep, jobs lost, houses lost and on and on and on. The positive power, which is actually the stronger of the two, is optional! If you embrace, overcome, grow and change, then you have an opportunity to take the negative power and turn it into a positive. People struggle in various areas of life everyday and if you have truly overcome your mistake, you now walk around with a key, a solution, a testimony. Unless you have experienced the same thing as another, you are unable to get on that level with them. While you may be compassionate, you will lack the ability to be able to feel the exact emotions of the message that those words are trying to convey! When you have experienced what they are currently experiencing, you can say to them, "I've been where you've been and I know how to help you through this and how to help you find your way back to you, a stronger you!" This is why I say that the positive is stronger than the negative! It's easy to fall into negativity but it is HARD to rise above. It is HARD to openly admit your weaknesses and failures out loud to others, but hang with me, because this is where it gets good!! The power comes in when you no longer let it be the shame that weighs you down. When you release your past demons, you take the control and place it back in your own hands! To then reach out to another and help them change their life or possibly even save their life, will ultimately have an impact on your life as well . You will still have that key at your disposal, but now there are TWO of you walking around with this key. This can have a domino affect and before you know it, there are keys all over town, ready to unlock doors and help people drag out the pain and hurt and replace it with peace, love and happiness. When your thinking is skewed, it can be nearly impossible to find the exit sign in the dark and sometimes we just need someone to take our hand and lead us out.
Pain is real and it comes in various forms with differing intensities. Some forms of pain are obvious to others, while many are not. Obvious or not, it does not change the fact that it is real and it hurts! Physical pain is hell, I will not deny this, but it can only hurt on a surface level. Emotional/Mental pain takes it to a whole different level! That kind of pain cuts straight through your body and into your core, your very soul! Physical wounds tend to heal but there is no way to put a bandaid on this kind of pain. The wounded soul is very difficult to heal, especially if there is a chemical imbalance in the brain, which hinders your thinking process. When the brain is sick, it malfunctions, just as the rest of our organs do when we get sick. A healthy brain will not obsess over negativity, but when things aren't going well and there is a trending topic that is going on inside, your brain will take that and run with it. It will go into overtime analyzing, processing and recirculating it in your brain over and over and over. For some people, without help, this spirals and spirals until the only viable solution within their mind, is to cease to exist. How does someone decide this? Truthfully, for someone who does this, many times they were dead inside long before that final moment. Smiles and laughter mean something, but they don't mean everything. When smiles and laughter are used as a mask, many times that person is just going through the motions, hoping that they can fake it until they make it or just to hide the truth altogether. Everyone wants to be seen in their best light and there is so much shame attached with depression. But why? Why are we judging these people while we sit back and do nothing? Do you really get an input, after the fact, when you did nothing to try to stop it? I include myself in this; It has been years since my attempt, but I could have spoken up a long time ago and I do have friends who have succumb to this since that day! If I had spoken up, maybe they would have known that they could talk to me. I won't dwell on that, but I will carry it with me so that I never forget to be that key for another. If you really want to make a difference in the world; if you really want to find peace and happiness - Step outside of yourself and do something from your heart for another. Drop your agenda and see what happens when you push out the hatred and judgement and simply choose to love another heart and value that heart enough to get down on your knees next to them and help them rise again! Your life, your outlook and your heart will change! If you are someone who is hurting today, let me tell you something. YOU are stronger than this! You don't have to change everything all at once, but it's time to take some baby steps! RETRAIN YOUR THINKING- something that I did for myself, was everytime I had a negative thought, I got an index card and decorated it and put a positive quote, affirmation or scripture and then I hung it up in my bathroom, bedroom, kitchen, my car and so forth. I took each negative and I turned it into a positive and everytime I brushed my teeth or washed dishes, I forced myself to read these words over and over again! Another thing is the gym- When I am stressed, upset or feeling depressed, I put on some angry music, I let myself get MAD and then I work out as hard as I can, then I leave the frustration right there in the gym! It is another way of redirecting; Instead of letting it eat me alive, I take it to the gym and I let it fuel me to build my strength [getting sexy in the process is just a bonus ;)]. These are just two examples but maybe you can build from there! You can be happy again but it will never happen if you aren't willing to reach out to another or take steps on your own! Again, I am ALWAYS here for someone who needs someone to talk to. I have the key and I'll be more than happy to share my key with you and eventually give you a duplicate! =] I made a video today, I invite you to watch it. My phone stopped recording at the end, but I still wanted to share this with you! (At the end, I was only trying to say that I will spend every day from here on out trying to be better than the day before, to be a person that my children will be proud of and a person worthy of forgiveness) i attached the link but i am including it right here - you may have to copy and paste or type it into your browser) http://youtu.be/mJJ_qUSpqN4 A new mother, a sailor, a wife... That was me! I thought I had a pretty good handle on life and I just knew that I had forged a path that would carry me straight into my future. I was wrong! I woke up, days after the birth of my daughter in the worst pain of my life! That is the day that my world flipped upside down and nothing has been the same since. My final diagnosis came 3 days before my reinlistment and then after a 1 yr long medical board, I was medically retired from the Navy with a sick twisted gut and a broken heart! I loved my job-Cryptology, Intelligence field - I was looking forward to the day I could say that I am a 20 year veteran, but here I am, 8 yrs post retirement, still trying to find my way, unemployed and stuck in this bed.
Reflecting back, there is one symptom that sticks out in my head. The constant pain, diarreah, vomitting, extreme weight loss, loss of hair and lack of energy were pretty bad, but there is a symptom that is far worse-GUILT!!! When I was diagnosed, my disease was out of control and surgery happened months later. At the time of surgery, I had 6 strictures. Strictures occur when your intestines continue to get inflamed and swell, scar tissue begins to build until your intestines are too closed off for anything to pass. When this happens, weight drops dramatically, pain is at an all time high and vomitting happens all day, every day, because food isn't able to pass through the body. Everytime I visited with friends, family or my ex-husband's family, I would get up in the middle of dinner, be sick and have to spend the rest of the evening in bed. I feared that they would think I was bulemic, but the truth is, I WAS bulemic, but not by choice, so hear me out... As soon as I would eat, the pain would immediately intensify and when the pain was at its peak, it caused me to throw up. I would eat and become petrified of what was to come, all the while beating myself up for even trying to eat (How dare I?) and so I would make myself throw up in an attempt to avoid the pain and another ER visit. Then lastly, my body was so used to throwing up that I would throw up for no reason at all other than my body doing what it had learned from my own actions. Vacations ruined, Holidays ruined, Fun days out, ruined.. I ruined everything and I was sure to let myself know this, every step of the way. I was burdening those around me and I knew it. Every day I was in the doctors office and what seemed like every night I was in the Emergency room. I was letting down the people I work with, because I was never there anymore. I let down my husband who didn't ask to be a part of this and I essentially let down everyone close to me, at least that is what I told myself. I was so very sick, that I would collapse down the stairs and my ex husband would have to pick me up and carry me back up and to the bathroom where I would be sick again. I was so weak that I couldn't hold my head up and he would have to hold my head up for me and then put me to bed. I still remember saying to him that if I ever got put in the hospital for a long time that I wanted him to take a lover on the side. This broke my heart to say these words to him, but I did mean it. I loved him and I wanted him to be happy! I couldn't bear the idea of him suffering forever bc of me. I wanted him to have someone to go on dates with and laugh with and to have intimacy and all the things that a young man should have... all the things that I didn't know if I could give to him any longer. I would beat myself up every step of the way, worrying only about how I am ruining things and affecting others. I still do this, but not as bad because I recognize and accept the truth now. What is beyond my control is not my fault and if people love and care for me, they will accept the disease as it is a part of me. What has made me take a look at my own guilt is what I have seen from others. I am very active in several online Crohns support groups. I see posts all the time that say, "Weekend cut short, I've spoiled it for everyone". "Supposed to go on a date tonight but as usual, I'll be stuck in bed, alone" "Why do I have to ruin every special family event, can't we have just one?" I see statements like these all the time, so I know that the guilt isn't just my guilt. It is a part of the disease. This disease is so much more complex than most people can possibly fathom!! The physical aspects of Crohns Disease are horrendous but the hardest struggle with the disease, lies within our own mind.We are emersed in pain yet we have to push it down and keep a positive attitude so that we are not walking around biting people's heads off. Do you know how hard it is to be nice to people when you spent the 1st 3 hours of your day on the toilet, throwing up and having diarreah? When you are in so much pain that you not only want to pull your hair out but you actually pull your hair out? There are days where I would be tempted to sell my soul if it just meant 1 day of relief and I'm listening to you go on about some stranger who thinks that you are stuck up or your mad bc someone gave you a dirty look. Really? Personally, on my worst days, I want to slap you. I'll take a billion bad looks and tons of bad talk, just give me some damn relief!!! I refrain from the negative though and I put on the smile everyday, but it is hard, sometimes nearly impossible! I face a daily mental/physical battle just to survive. My guilt even led me down a dark path and at the end of that road was a bottle of ambien. I took that ambien and I swallowed them. I ended up on life support and I pulled through. I just thank the Heavens that God was there with me that day in all of my weakness, pain, shame and guilt. He saved me and He has been restoring me ever since! He has led me here to all of you, to be a voice and a source of support and hopefully preventing someone from making the same mistake as I did. It's hard for me to say all of this out loud, (most people do not know this about me) and I truly didn't expect to say that when I sat down to write this, but I know the only way to reach others is to be completely open and vulnerable. I let my guilt lead me there! If you are a fellow crohnie, please stop blaming yourself!! Focus on overcoming the disease and be sure to let go of negative comments of others and appreciate the positive things people say to you! The guilt will grow until it turns into a monster and it will truly have you believing that the world would be a much better place without you in it. This isn't true. Every person in this world is loved by someone and there are people out there who would be heartbroken and lost without you!! My door is always open to those who need a friend and a shoulder to cry on!! Be strong and be encouraged!! Every day is a chance for change and growth, you just have to take the first step!! For as long as humanity has been in existance, we have had an insatiable fascination with everything beyond our gravitational pull to the earth's suface. Today we have helicopters, airplanes, jets and even spacecrafts to explore, learn and transport us to places that our two legs could never never take us. Now, for just a minute, let's go back to the very beginning. Where did the inspiration that led to these amazing inventions stem from?? A bird... It's really just that simple..a bird!! We have all watched them and we have all had a curiosity about them at one time or another, even if only as a child. As a little girl, I tried to make my own set of wings and attempted to jump off of my bed, full of hope that I could fly as well. As I'm sure that you will know, without any form of explanation, this did not end the way I had anticipated. My attempt did not pan out, but someone was passionate enough to get it right and today we are able to fly through the skies and marvel at the beauty of our world from a different view, at any time we'd like! Now, I want to talk about the bird and the plane!! We are now able to see everything that the bird sees and we are able to fly side by side with that bird, but do we really know what it is like to be a bird??? Quick answer here: N-O!! We can fly a million times, but we will NEVER know what it is like to move our arms up and down and begin to rise into the air. So why all of the talk about birds and airplanes? It's an analagy-even if you are able to catch a glimpse, you cannot understand what it is like to be a bird, unless you are a bird. Crohns disease can be the same way. Unless someone has the disease, there is no possible way that they can understand what it is like to live with the disease!! I may not be able to squeeze someone into my body so that they can personally experience the torture within, but I hope to create an airplane, enabling people to see what our eyes see. The world looks very different from the sky, just as it looks very different from our perspective! I know that there will be people who refuse to step on the plane and take a little flight through our world to learn, grow and ultimately change their thinking, BUT, there are many people who will!! That is what excites me! Each person who takes the time to learn and change their mindset= More support and encouragement for each of us who have no other choice but to flap our wings and fly through the storm! It's going to take a while to build this "airplane", but I am lucky enough to have the support of so many people who struggle on a daily basis, just like me! Together, we will make a difference and I am so very thankful for each and every one of you!!
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