I hope you keep feeling better Alison. Many many being sent your way.
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Where I've been...and where I am.
- Thread starter alicatjoy
- Start Date
You have been through so much. I hope you continue to feel OK now.
Thinking of you sweetie, and sending LOTS of get well soon vibes your way!
Also, please know that anytime you want to talk, vent, etc. always feel free to PM me.
Get well wishes for Alison
I hope you're feeling even better today...
How are you feeling? Hope you're better!
- Thread Starter Thread Starter
- #27
I'm sorry I haven't updated this thread sooner. Things have been difficult lately on an emotional level and I've not felt up to posting about serious life issues much. And, I just had a very scary moment here at home, but that's a whole other story (and I will be posting about it, but first I need to calm down).
As far as my health goes, things are up and down. I did take the advice of others and get tested for C. diff and the result was, thankfully, negative. My GI issues have calmed down quite a bit, but I can tell that I'm having some residual issues as a result of the medications I was on. I was checked for a UTI/kidney infection again last Friday and the results came back positive. But, due to my GI issues related to antibiotic use and the fact that I struggle with resistant infections, I have held off on taking anything for the "infection." The results from the culture came back this afternoon and it was a good thing that I opted not to rush into taking antibiotics as this was not an infection. More than likely, I am having a severe flare up of my interstitial cystitis. The interstitial cystitis continues to progress and worsen, but most doctors do not want to treat me for it. I do what I can to maintain my health and wellness, but it is a chronic "disease" which causes chronic symptoms and pain. Thus, I have been struggling with a lot of discomfort, malaise, and pain. But, I know that this will pass and it will get easier -- I just need to remain patient.
Even though interstitial cystitis may not be a very common or well known health issue, I would think living in Cleveland would have its benefits. We have a number of excellent hospitals in this area, but many are unwilling to accept interstitial cystitis as a diagnosis (despite positive testing having been done on multiple occasions) and even more know so little about the condition that they choose not to treat it. My family medicine doctor is terrific and I adore her, but she is fighting me on some issues. Mainly, I am having a hard time getting enough nutrition and fluids in. This does not help my health issues nor does it help me emotionally, but it's where I'm at right now. She does not want to try a diet elimination trial with me (which, for some people, has proven beneficial in managing interstitial cystitis symptoms) since she feels I need to get my intake up first. I don't disagree, but between my not feeling well and some other problems, it's easier said than done. Nevertheless, I am trrying and hope to begin doing some research to better my quality of life in spite of a chronic health issue (only one of many issues I currently face).
I'm still in pain and am weak, but I'm getting stronger every day. I am also dealing with neurocardiogenic syncope (which was formally diagnosed -- I am waiting for testing for potential seizures) and my health issues now directly impact that condition. But, it's day by day. And, I'm thankful to be as healthy as I am...even though, by some standards, I'm not...
I don't know if that was a good update or a bad one. I'm just hanging in and hanging on. Sometimes that's all any of us can do, right? Thank you for all hanging with me
.
As far as my health goes, things are up and down. I did take the advice of others and get tested for C. diff and the result was, thankfully, negative. My GI issues have calmed down quite a bit, but I can tell that I'm having some residual issues as a result of the medications I was on. I was checked for a UTI/kidney infection again last Friday and the results came back positive. But, due to my GI issues related to antibiotic use and the fact that I struggle with resistant infections, I have held off on taking anything for the "infection." The results from the culture came back this afternoon and it was a good thing that I opted not to rush into taking antibiotics as this was not an infection. More than likely, I am having a severe flare up of my interstitial cystitis. The interstitial cystitis continues to progress and worsen, but most doctors do not want to treat me for it. I do what I can to maintain my health and wellness, but it is a chronic "disease" which causes chronic symptoms and pain. Thus, I have been struggling with a lot of discomfort, malaise, and pain. But, I know that this will pass and it will get easier -- I just need to remain patient.
Even though interstitial cystitis may not be a very common or well known health issue, I would think living in Cleveland would have its benefits. We have a number of excellent hospitals in this area, but many are unwilling to accept interstitial cystitis as a diagnosis (despite positive testing having been done on multiple occasions) and even more know so little about the condition that they choose not to treat it. My family medicine doctor is terrific and I adore her, but she is fighting me on some issues. Mainly, I am having a hard time getting enough nutrition and fluids in. This does not help my health issues nor does it help me emotionally, but it's where I'm at right now. She does not want to try a diet elimination trial with me (which, for some people, has proven beneficial in managing interstitial cystitis symptoms) since she feels I need to get my intake up first. I don't disagree, but between my not feeling well and some other problems, it's easier said than done. Nevertheless, I am trrying and hope to begin doing some research to better my quality of life in spite of a chronic health issue (only one of many issues I currently face).
I'm still in pain and am weak, but I'm getting stronger every day. I am also dealing with neurocardiogenic syncope (which was formally diagnosed -- I am waiting for testing for potential seizures) and my health issues now directly impact that condition. But, it's day by day. And, I'm thankful to be as healthy as I am...even though, by some standards, I'm not...
I don't know if that was a good update or a bad one. I'm just hanging in and hanging on. Sometimes that's all any of us can do, right? Thank you for all hanging with me
Sounds like you have your hands full right now!Originally Posted by Alison Joy
I'm sorry I haven't updated this thread sooner. Things have been difficult lately on an emotional level and I've not felt up to posting about serious life issues much. And, I just had a very scary moment here at home, but that's a whole other story (and I will be posting about it, but first I need to calm down).
As far as my health goes, things are up and down. I did take the advice of others and get tested for C. diff and the result was, thankfully, negative. My GI issues have calmed down quite a bit, but I can tell that I'm having some residual issues as a result of the medications I was on. I was checked for a UTI/kidney infection again last Friday and the results came back positive. But, due to my GI issues related to antibiotic use and the fact that I struggle with resistant infections, I have held off on taking anything for the "infection." The results from the culture came back this afternoon and it was a good thing that I opted not to rush into taking antibiotics as this was not an infection. More than likely, I am having a severe flare up of my interstitial cystitis. The interstitial cystitis continues to progress and worsen, but most doctors do not want to treat me for it. I do what I can to maintain my health and wellness, but it is a chronic "disease" which causes chronic symptoms and pain. Thus, I have been struggling with a lot of discomfort, malaise, and pain. But, I know that this will pass and it will get easier -- I just need to remain patient.
Even though interstitial cystitis may not be a very common or well known health issue, I would think living in Cleveland would have its benefits. We have a number of excellent hospitals in this area, but many are unwilling to accept interstitial cystitis as a diagnosis (despite positive testing having been done on multiple occasions) and even more know so little about the condition that they choose not to treat it. My family medicine doctor is terrific and I adore her, but she is fighting me on some issues. Mainly, I am having a hard time getting enough nutrition and fluids in. This does not help my health issues nor does it help me emotionally, but it's where I'm at right now. She does not want to try a diet elimination trial with me (which, for some people, has proven beneficial in managing interstitial cystitis symptoms) since she feels I need to get my intake up first. I don't disagree, but between my not feeling well and some other problems, it's easier said than done. Nevertheless, I am trrying and hope to begin doing some research to better my quality of life in spite of a chronic health issue (only one of many issues I currently face).
I'm still in pain and am weak, but I'm getting stronger every day. I am also dealing with neurocardiogenic syncope (which was formally diagnosed -- I am waiting for testing for potential seizures) and my health issues now directly impact that condition. But, it's day by day. And, I'm thankful to be as healthy as I am...even though, by some standards, I'm not...
I don't know if that was a good update or a bad one. I'm just hanging in and hanging on. Sometimes that's all any of us can do, right? Thank you for all hanging with me.
Lots of vibes heading that way for you to feel better soon!
My mom has interstitial cystitis and takes some supplements for it that seem to help her! I can ask her what she uses if you'd like...may be worth a try! She also uses this website for information/help
