S
Sparrow
Guest
I use to be a regular at the healingwell crohn's forums for a while and even became a mod there for a short time till I got pretty sick and unable to log in to help with the forums.
There was a nice girl on the forums who posted a few times, I forget her name but she posted the following and I cut and pasted and kept this and read it now and then because I can really relate to what she says, and I'm sure you can as well. And its always nice to know you aren't alone. So I really hope she wouldn't mind me sharing this on this forum:shifty-t:
Not sure if there are any rules etc on reposting things from public forums like this so I will delete this if thats the case.
I sat down today and decided to write out how I am feeling, as I was asked, yet again, what this cd is like, and how it affects me. Here is what I wrote, let me know if you all feel the same, different, or if I forgot something:
I have been asked many times what this disease is like, how it affects me, etc. Well there is the med ical explination which says something like: mild to severe: diarrhes, nausea/vomiting, abdominal pain, dizziness, weakness, malnutrition, fistulas, arthritis, liver and kidney problems, higher risk of cancer, fevers, chills, etc, etc, etc.
Then there is what I call the human side of this cd:
The FEAR it causes: -of pain, surgery, getting worse, not getting better, dying os starvation (I know that is rare, but I came too close to that once, right before my first resection, dropped to 80 some pounds, GI kept saying nothing was wrong for months, then he found the stricture), more symptoms, never getting pain relief, of embarrassing ourselfs with accidents/ public farts, that our partners may leave us because they can't deal with the cd anymore, or never finding that special someone because of this cd, of judgement by others, Dr's, & Gi's, of not being HEARD by your dr, gi, of being alone, etc.
The craving: someone to support you, to be close to, to feel "normal", to be pain free for at least 1 day, 1hour or even 1 minute, not to mention the foods you can't touch.
The Desperation: to get out of the hospital, to get better, to never have to go for another test, surgery, dr's apointment, or hospital stay.
The Guilt: of being jealous of those who can eat anything, and do anything they want and of those who are not ill, of not getting anything done today/yesterday/tomorrow, of having to have others take care and support us- family, friends, loved ones, gov't
The Sadness: that we will never be the same, of what we have lost physically, emotionally, financially, loss of stability, even loss of a good night's sleep
The Frustration and Anger: of the inability to afford good (or any) medical care, dr's appointments, medical tests, and perscriptions, that others don't understand what we go through, that dr's and GI's don't/won't always listen, that others with well known/different diseases get better care, and pain control, but we have to "make do" or ""deal with " the pain, or are told by the all-knowing Gi's/dr's that we SHOULD NOT be in pain, as so therefore we are not in pain. Anger at those who distance themselves, or leave and/or make excuses because they dn't want to deal with cd, that the medical coverege covers meds like viagra, but not someof the meds we need.
Anxiety: of being alone in the ER, during med tests, waiting for results, waiting for the pain to go away, waiting to get worse, waiting to get better, waiting to see if your partner will leave or stay, waiting to see if someone, anyone will listen when you talk (TG for you all at HW!!!!!! )
The Needy part of us: needing so much support, need to have others "do" for us (cook, clean, listen, give support), need to be HEARD by our dr's, to be loved as we are, as we love others, need for action (to actually have some sr give us meds that work, or to have him/her actually listen and want to help us feel better, not just et better)
Tired: of being ignored by GI/DR's, of being thought of as whiney or drug seeking when in pain and needing relief, of being weak, sick, tired, of wanting to do so much, but only bale to do so little, of crying when f gets to be too much, being sad, of the D and all the other symptoms.
There, now that describes it for me. Does it describe at least some of it for you?
There was a nice girl on the forums who posted a few times, I forget her name but she posted the following and I cut and pasted and kept this and read it now and then because I can really relate to what she says, and I'm sure you can as well. And its always nice to know you aren't alone. So I really hope she wouldn't mind me sharing this on this forum:shifty-t:
Not sure if there are any rules etc on reposting things from public forums like this so I will delete this if thats the case.
I sat down today and decided to write out how I am feeling, as I was asked, yet again, what this cd is like, and how it affects me. Here is what I wrote, let me know if you all feel the same, different, or if I forgot something:
I have been asked many times what this disease is like, how it affects me, etc. Well there is the med ical explination which says something like: mild to severe: diarrhes, nausea/vomiting, abdominal pain, dizziness, weakness, malnutrition, fistulas, arthritis, liver and kidney problems, higher risk of cancer, fevers, chills, etc, etc, etc.
Then there is what I call the human side of this cd:
The FEAR it causes: -of pain, surgery, getting worse, not getting better, dying os starvation (I know that is rare, but I came too close to that once, right before my first resection, dropped to 80 some pounds, GI kept saying nothing was wrong for months, then he found the stricture), more symptoms, never getting pain relief, of embarrassing ourselfs with accidents/ public farts, that our partners may leave us because they can't deal with the cd anymore, or never finding that special someone because of this cd, of judgement by others, Dr's, & Gi's, of not being HEARD by your dr, gi, of being alone, etc.
The craving: someone to support you, to be close to, to feel "normal", to be pain free for at least 1 day, 1hour or even 1 minute, not to mention the foods you can't touch.
The Desperation: to get out of the hospital, to get better, to never have to go for another test, surgery, dr's apointment, or hospital stay.
The Guilt: of being jealous of those who can eat anything, and do anything they want and of those who are not ill, of not getting anything done today/yesterday/tomorrow, of having to have others take care and support us- family, friends, loved ones, gov't
The Sadness: that we will never be the same, of what we have lost physically, emotionally, financially, loss of stability, even loss of a good night's sleep
The Frustration and Anger: of the inability to afford good (or any) medical care, dr's appointments, medical tests, and perscriptions, that others don't understand what we go through, that dr's and GI's don't/won't always listen, that others with well known/different diseases get better care, and pain control, but we have to "make do" or ""deal with " the pain, or are told by the all-knowing Gi's/dr's that we SHOULD NOT be in pain, as so therefore we are not in pain. Anger at those who distance themselves, or leave and/or make excuses because they dn't want to deal with cd, that the medical coverege covers meds like viagra, but not someof the meds we need.
Anxiety: of being alone in the ER, during med tests, waiting for results, waiting for the pain to go away, waiting to get worse, waiting to get better, waiting to see if your partner will leave or stay, waiting to see if someone, anyone will listen when you talk (TG for you all at HW!!!!!! )
The Needy part of us: needing so much support, need to have others "do" for us (cook, clean, listen, give support), need to be HEARD by our dr's, to be loved as we are, as we love others, need for action (to actually have some sr give us meds that work, or to have him/her actually listen and want to help us feel better, not just et better)
Tired: of being ignored by GI/DR's, of being thought of as whiney or drug seeking when in pain and needing relief, of being weak, sick, tired, of wanting to do so much, but only bale to do so little, of crying when f gets to be too much, being sad, of the D and all the other symptoms.
There, now that describes it for me. Does it describe at least some of it for you?