I've been off Cimzia (my last biologic medication option) for about 7 months now due to anaphylactic reactions beginning with that med - as I did with Remicade and Humira. I'm on oxycontin (60mg) 4x/day, Percocet 4-6 tabs/day, and Neurontin (1800mg/day), plus my thyroid med b/c I have Grave's disease too and Xoloft and Klonipin for the depression and panic attacks.
I lost my job over one year ago and while I am married I have 2 kids from a previous marriage who my ex does not support financially. My husband has 2 kids from his previous marriage that due to his income (he's a Forensic Pathologist) pays a hefty child support-and that's fine b/c that's the right thing to do. BUT....when people look at you and assume that your life must be so easy b/c your husband is a doc and you have access to great military healthcare, etc....it's just so wrong!!
Yesterday I was in bed until 5:30pm. I hurt all over from head-to-toe even with the narcotics. I am in pain all of the time. I can't seem to lose weight even though I've got diarrhea bad enough to have accidents at this point. I have nothing in me to help with my disease and just feel like I'm a "sitting duck" so to speak for my disease to regain control of my body.
No one seems to truly understand how much this disease hurts. How much this disease limits your abilities. How much this disease depresses you. And moreover, how much this disease changes you.
I don't feel worthy of love from anyone but my parents. My marriage has major unresolved issues and my kids are, well, they're kids (14 & 11). I want to be a great mom and try to be a great wife through all of the emotional hurt, but when it's compounded with the physical pain, how can I do that????
No one seems to understand or want to give patience to the fact that I'm depressed, feeling unloved, unwanted and moreover unattractive as a woman. I hate this disease and how you scream for it to never identify you, and encourage others to challenge the disease and to not allow it to identify or label them, but try as I might it is doing just that and it will not stop. It seems I am forever stuck. I want to lose this weight that the meds made me gain even while only eating oatmeal and a small portion of dinner with my family, but my body won't lose the weight. It's yet another battle. I used to run- literally run marathons with my now husband, but I destroyed myself and was down to less than 120lbs at 5'8". I was malnourished and he never saw it or wanted to see it, my family pleaded with me to stop b/c I was destroying myself and all I could see was that I was DOING IT! I was pushing past the barrier of this disease (even when pooping in the woods along the trail while running, chugging a whole bottle of Imodium before a run and taking pills during a run, not eating before or after because of the cramping), but I was doing something normal. And now I can't.
Does anyone understand the hurt? Does anyone understand the reasons behind the isolation I put myself into? Does anyone understand the feelings that I can't do anything, not even get a job b/c I have so many appts and b/c I have physical limitations. Does anyone out there understand me?
Does anyone know how it feels to look nice on the outside but inside all you can think of is how your body is destroying itself. Sure, I stand at 5'8" and am fairly attractive with auburn hair and blue eyes, nice clothes that make me look "put together", kids who behave in public, and a smile when required. But inside my mind I'm drowning and all I want is a touch, a physical acceptance and to hear that I'm beautiful, wanted, accepted, worthy, etc....and that my disease as disgusting as it is doesn't change how people view me and that I'm okay.
I'm d-o-n-e and alone. I'm surrounded by pets and a family and yet feel alone and like I can't carry-on.
Kate
I lost my job over one year ago and while I am married I have 2 kids from a previous marriage who my ex does not support financially. My husband has 2 kids from his previous marriage that due to his income (he's a Forensic Pathologist) pays a hefty child support-and that's fine b/c that's the right thing to do. BUT....when people look at you and assume that your life must be so easy b/c your husband is a doc and you have access to great military healthcare, etc....it's just so wrong!!
Yesterday I was in bed until 5:30pm. I hurt all over from head-to-toe even with the narcotics. I am in pain all of the time. I can't seem to lose weight even though I've got diarrhea bad enough to have accidents at this point. I have nothing in me to help with my disease and just feel like I'm a "sitting duck" so to speak for my disease to regain control of my body.
No one seems to truly understand how much this disease hurts. How much this disease limits your abilities. How much this disease depresses you. And moreover, how much this disease changes you.
I don't feel worthy of love from anyone but my parents. My marriage has major unresolved issues and my kids are, well, they're kids (14 & 11). I want to be a great mom and try to be a great wife through all of the emotional hurt, but when it's compounded with the physical pain, how can I do that????
No one seems to understand or want to give patience to the fact that I'm depressed, feeling unloved, unwanted and moreover unattractive as a woman. I hate this disease and how you scream for it to never identify you, and encourage others to challenge the disease and to not allow it to identify or label them, but try as I might it is doing just that and it will not stop. It seems I am forever stuck. I want to lose this weight that the meds made me gain even while only eating oatmeal and a small portion of dinner with my family, but my body won't lose the weight. It's yet another battle. I used to run- literally run marathons with my now husband, but I destroyed myself and was down to less than 120lbs at 5'8". I was malnourished and he never saw it or wanted to see it, my family pleaded with me to stop b/c I was destroying myself and all I could see was that I was DOING IT! I was pushing past the barrier of this disease (even when pooping in the woods along the trail while running, chugging a whole bottle of Imodium before a run and taking pills during a run, not eating before or after because of the cramping), but I was doing something normal. And now I can't.
Does anyone understand the hurt? Does anyone understand the reasons behind the isolation I put myself into? Does anyone understand the feelings that I can't do anything, not even get a job b/c I have so many appts and b/c I have physical limitations. Does anyone out there understand me?
Does anyone know how it feels to look nice on the outside but inside all you can think of is how your body is destroying itself. Sure, I stand at 5'8" and am fairly attractive with auburn hair and blue eyes, nice clothes that make me look "put together", kids who behave in public, and a smile when required. But inside my mind I'm drowning and all I want is a touch, a physical acceptance and to hear that I'm beautiful, wanted, accepted, worthy, etc....and that my disease as disgusting as it is doesn't change how people view me and that I'm okay.
I'm d-o-n-e and alone. I'm surrounded by pets and a family and yet feel alone and like I can't carry-on.
Kate