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My Story (I wrote this as a letter to anyone who would listen
Note: At the time I wrote this letter I had been diagnosised with ulcerative colitis (the other form of inflammatory bowel disease) the following March it was changed to Crohn's disease. I am also not on steriods any more and have many more (and different) medications than I did then)
October 14, 2003
October 14, 2003
Dear Reader,
Ever see the commercials on TV about diseases? You know the ones that mention some illness and then a medication or product to assist someone living with that diseases? Of course you have, we’ve all seen them. Ever wonder who has these diseases or what its like to live with a chronic/life threatening disease? I don’t have to wonder what its like, I have to live with chronic/life threatening diseases, as if more than one, everyday until a cure is found. If you were to see me on the street, what do you think I’d look like? Do you think I’d look “sick” or have some sort of sign around my neck that says “oh here look at me, I’m sick” no, that’s not how it is. I look “healthy”, I look like everyone else, but I’m not. I’m not like everyone else. I have type one diabetes, ulcerative colitis, chronic sinusitis and migraines. except for my insulin pump, which you may not notice I look fine, but what's going on inside of my body isn't.
Let me explain a bit about how the body is supposed to behave with said that you understand why mine doesn't. Everybody has an immune system which protects them against viruses and bacteria, basically, we think of the union system as an army to keep your body healthy, but sometimes when it's your army is fighting off infections or viruses it gets a bit over active and intense fighting off itself as it gets to the point where it cannot distinguish between a bad cells and good ones, causing an autoimmune disorder. In my case this happened after had strep throat when I was 13, my immune system fought off its own islet cells so that my body and no longer produces insulin, a hormone that allows the body to absorb sugar, without it you die. Now, recently, my immune system has gone haywire for second time, but this time it was in my:, which led to an inflammation of the colon, when that happens it produces closer's which reduce cost and lead and that leads to chronic diarrhea, among other symptoms. That's a bit about the cause of diabetes and most of colitis, now that you know more about the body and how it supposed to function. Now on to bit about how I live with these diseases.
For diabetes I take insulin continuously via an insulin pump which is connected to me through small catheter that I change every three days in my abdomen. Also check my blood shares at least four times a day and watch what I eat, before ulcerative colitis I would normally eat three meals a day, with lots of fresh fruit and vegetables. I also have lab work done every three months to see how one doing, and except for going hypoglycemic which is when I don't have enough insulin I'm pretty used to diabetes, and even though there's no cure for type one diabetes, it is a very controllable illness and in that regard very predictable.
But ulcerative colitis is a very different story. First of the symptoms can be quite severe, and it and so can the side effects of the medications used to treat all some of colitis. Also colitis is not predictable as diabetes is and there is no guarantee that the medications will always work, and it is not entirely clear as to what causes most of colitis and the only way to cure it is to remove the entire colon, which has problems of its own. more about it day to day life with ulcerative colitis. For starters I take between 30 and 40 pills a day, most of which are ulcerative colitis a few are for allergies and asthma. the treatment for ulcerative colitis involves the use of a 5 ASA drug, mine is colazal, mesalamine, the 5 ASA drug is used to soothe the large intestine a.k.a. the colon, and it is a localized immune suppressant. There are not many site of fax with long-term use of five ASA's. Next If the five ASA’s are not enough to induce a remission then the next step is to be put on prednisone, which is also used to treat severe asthma attacks, certain types of cancer, systemic lupus, rheumatoid arthritis, prednisone is an extremely powerful medication. What it does is it reduces inflammation anywhere in the body by suppressing the immune system which makes it easier to get a cold or infection well on it.
Prednisone has able list of side effects including; heartburn, insomnia, bone density loss, headache, round face, hair loss, facial hair growth, acne, weight gain, water retention, increased appetite, mood swings, and permit it hit displacement. Prednisone also causes the body to stop producing natural corticosteroids which can take anywhere from two months to two years for the body to recover and you cannot get any vaccines or immunizations while on prednisone. I already experienced many side effects for instance I take Zantac to relieve the heartburn that prednisone causes and I take extra calcium to help prevent from losing bone density. I it also take doxepin which is normally used as an anti depressant but also has been relief or pain control which is why I take it because pain can be quite severe with ulcerative colitis.
I can't make plans any more because I never know how I'll be feeling. I can be fined one minute within the next minute have to rush to the bathroom with such intense urgency that I am not even able to describe. Sometimes the pain is so intense that I cannot eat or am to nauseous or fatigued that I am not able to do anything but lay in bed awake and in pain. and ulcerative colitis is a very unpredictable and I hate sometimes and feel so sad that all wanted to is crying I don't know if it's the prednisone or if it's sadness about the disease sometimes ask myself why me? why did I have to get sick? I don't have any answer for that. Try explaining living with a chronic disease that is so wildly unpredictable to friends and family who only see the outside that looks fine. But it won't ever be fine no matter how could any feel on any given day and still have to fight for my life each and every day, some of the medications I'm on cannot be skipped other not even once. Some days I struggle to get enough calories. Before ulcerative colitis, nutrition was not a problem, but until I am safely in remission which is of prednisone and doing well that I can eat what effort I will whenever I want right now I eat foods that I know will not irritate my large intestine which does not include foods that contain lot of fiber foods that are normally very healthy for you like fruits and vegetables and nuts, my favorites.
How odd for my dad to buy me cookies and candies, foods that are high in calories but do not have a high nutritive value foods that do not leave the residue in the large intestine. I've even taken to drinking in sure on days when I don't feel up to even I never know how field so I just take it one day at a time, which is difficult for someone who was only 20 and trying to enjoy a college life while still making plans for the future. I want to be well in I'm so tired. I'm tired of my stomach that abdomen hurting all the time and tired of having to run to the bathroom, 5, 10, 15, 20, 25, 30, times a day and spending more time on the toilet and off of it. Having almost constant diarrhea that is bloody, bright red blood like you'd normally see when your period but isn't.
I felt ill for so long I almost forgot what it was like not to be. I'm not able to do as many extra activities as my friends are, I have to spend more time resting. But I know I am wiser than my friends are because of the experiences I have been through. I know when it comes to certain topics, like life I'm way ahead, you see, I don't take life for granted the way many people my age do. I've watched too many of my friends die from chronic illnesses. When I was 14 I have a friend die from AIDS which she got from a blood transfusion when she was a baby, when I was 15 a closer friend lost his battle with cancer. I know what really matters, I know it has nothing to do with what you wear or how people view you but how you view yourself. I also know that illness can strike anyone anytime and anywhere and that it does not discriminate between races or economic groups.
My career goal is to become a physician, specifically when I want to be a pediatric hematologist oncologist at Miller's Children's Hospital, where I've spent plenty of time. A want to help children with cancer and other blood disorders. I think I have a unique perspective because I've been a pediatric patient at Miller's five times. Recently to, a just under a month ago I spent three weeks in the hospital. I know firsthand what it is like to be in the hospital, something else that most people my age do not really understand.
What do I want from someone reading this? I want understanding. Questions are fine, but what I do not want is pity or assumptions that just because I'm smiling then fine, all to our I'm just putting on a happy face as the expression goes why? Because sometimes and I don't all, and also because people don't like it when someone complains that they don't feel well frequently that is just not socially acceptable, while neither is talking about diarrhea and nausea but we are working on that. I'm always more hot and have been to answer questions even if their personal because I want people to understand the challenges I face each and every day living with chronic. People who live with chronic illness are still people, people who want to be loved, included, and treated like like people and not just diseases and for the most part what we want is understanding. Just because you cannot see that I am set that doesn't mean I'm not. And hope this gives you a just a glimpse into my world.
Yours truly,
Leah
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Journal
Tuesday, July 17, 2007 4:26 PM PDT Hi. I'm in the hospital now. I'm at Long Beach Memorial Medical Center. I'm in room 660A (i was hoping to get assigned to 6th floor as all rooms are private and i got LUCKY!). My direct phone number is (562) 933-6601. I don't know how long I'll be here...I'm hoping for a short of a stay as possible. I know that I will be having surgery at some point and as to when that will be will also play into how long i'll be here. I would LOVE to have visitors and phone calls (and emails too!)
I will try to send out updates as to how i'm doing and what's going on.
Hope everyone is doing as well as possible!
Looking forward to hearing you soon!!
Leah
Hi.
I just found out today that my latest blood cultures are positive, which means I have an infection in my blood. i went to an urgent care center today (as directed by my doctor) and recieved a dose of IV antibiotics, which i'll have repeated tomorrow. then on monday i'll be directly admitted to the hospital and will have my port-a-cath removed (surgery #6) sometime during the week. i was also told that i'd have a PICC line put in again (groan) for several weeks as i'll have to have IV antibiotics at home for sometime to make sure the infection is completely cleared. anyways, i'm sending out this email to let you know that i'll be in the hospital starting sometime on monday, july 16th until ??? (whenever the doctors decide i can go home). i will be at long beach memorial medical center. the general phone number is 562-933-2000. i plan to send out another email once i'm settled in a room with my specific room info. i LOVE having visitors, phone calls, and emails while i'm in the hospital! anyways, i thought i'd let everyone know what's going on and i'll plan on sending out another email once i'm there.
i hope to hear from you soon!
Leah
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