I haven't been on here in about a year. It seemed every time I tried to blog, something was wrong with the site. So here I am today. I know there are a lot of us who are sharing our stories and the reason we do it is to educate others, to help those who may be afraid to ask anyone questions, or because we have people who think they know what is wrong with us, or we are making up our DISEASE. Many do not know our daily lives and how many of us have to fight with ourselves just to get up out of bed. A doctor appointment that is cancelled because we can not stay too far from the bathroom. Many do not understand what it is we go through and just don't care.
I have had people tell me to get off my ass and get a job! Yes, I am serious! Was told there was nothing wrong with me that I could still work, I could get a job working on a computer. While that sounds fantastic, as I hated leaving my job and now on SSDI I can't imagine how someone could ever go with out ever having a job. That is just not me. I raised two children and worked a full-time job. Most of the time I worked between 75-90 hours a week. But, I had a brand new home in a prestige part of town. Working has always been a big part of my life. I found it hard not having a routine anymore. When Crohn's Disease literally just about killed me, I was working 2 jobs. I loved my job! I was independent, if I wanted something I went out and bought it.
Crohns Disease is ugly and what it puts you through is even uglier. I love when people tell how sick they are with the stomach flu. Try feeling that way x100! No Joke! This isn't a weight loss diet. I lost from 120lb-65lb at my worst. Then I would be put on Prednisone, Humira, and Entyvio and guess what they did? They put way too much weight on me. And, this is where the Gastroparesis comes in. I don't absorb nutrients, I am malnourished, anemic, and sometimes my iv fluids don't keep me hydrated. I have learned that with Gastroparesis I can gain weight because my blood glucose levels spike, they are always all over the place.
I did have someone tell me to quit taking all my medications, and go to work. Unfortunately, my meds I need to feel half way decent, and no one should tell anyone to stop taking their prescribed medication, because at that moment you truly don't understand the disease.
I have an ileostomy, had it since 2011. Best thing that ever happened to me actually. It gave me my life back. Before, I was stuck at home and usually in the bathroom with my phone and charger.
Yes, I may not look sick. Yes, you might ask how I am feeling, and I will say fine {only bc you seriously don't want to hear me complain.} No, you can not see my ostomy through my clothes, I hide it very well.
You never know what might be our biggest issue for the day. Today, it has been my ostomy, It was already red from the barrier strips and inflamed. I have had to change it 3 times today. My skin has come off with the strips because of the trauma, and is on fire! I have tried every know remedy I can use.
So, next time someone tells you, "You don't look sick" tell them "and you don't look stupid." There are always going to be those who think we are faking, but most of it is because they choose not to read all the information that is out there, or reading other blogs. Not everyone's Crohns is the same, nor Ulcerative Colitis, nor Gastroparesis.
I have had people tell me to get off my ass and get a job! Yes, I am serious! Was told there was nothing wrong with me that I could still work, I could get a job working on a computer. While that sounds fantastic, as I hated leaving my job and now on SSDI I can't imagine how someone could ever go with out ever having a job. That is just not me. I raised two children and worked a full-time job. Most of the time I worked between 75-90 hours a week. But, I had a brand new home in a prestige part of town. Working has always been a big part of my life. I found it hard not having a routine anymore. When Crohn's Disease literally just about killed me, I was working 2 jobs. I loved my job! I was independent, if I wanted something I went out and bought it.
Crohns Disease is ugly and what it puts you through is even uglier. I love when people tell how sick they are with the stomach flu. Try feeling that way x100! No Joke! This isn't a weight loss diet. I lost from 120lb-65lb at my worst. Then I would be put on Prednisone, Humira, and Entyvio and guess what they did? They put way too much weight on me. And, this is where the Gastroparesis comes in. I don't absorb nutrients, I am malnourished, anemic, and sometimes my iv fluids don't keep me hydrated. I have learned that with Gastroparesis I can gain weight because my blood glucose levels spike, they are always all over the place.
I did have someone tell me to quit taking all my medications, and go to work. Unfortunately, my meds I need to feel half way decent, and no one should tell anyone to stop taking their prescribed medication, because at that moment you truly don't understand the disease.
I have an ileostomy, had it since 2011. Best thing that ever happened to me actually. It gave me my life back. Before, I was stuck at home and usually in the bathroom with my phone and charger.
Yes, I may not look sick. Yes, you might ask how I am feeling, and I will say fine {only bc you seriously don't want to hear me complain.} No, you can not see my ostomy through my clothes, I hide it very well.
You never know what might be our biggest issue for the day. Today, it has been my ostomy, It was already red from the barrier strips and inflamed. I have had to change it 3 times today. My skin has come off with the strips because of the trauma, and is on fire! I have tried every know remedy I can use.
So, next time someone tells you, "You don't look sick" tell them "and you don't look stupid." There are always going to be those who think we are faking, but most of it is because they choose not to read all the information that is out there, or reading other blogs. Not everyone's Crohns is the same, nor Ulcerative Colitis, nor Gastroparesis.