I go back and forth between feeling like I can conquer this condition and feeling completely held hostage by it. I think most people with chronic conditions just get used to their limitations, and I understand that. But there's something about this thing, that really gets me. It's the feeling separate thing. At any given point on any given day, I usually don't feel alive anymore. On a good day, at a good moment I will be smiling and laughing and knowing that my lust for life with conquer all this BS. On all the other days, which seems like pretty much every day, I live a detached life. A lot of the times I don't feel alive anymore, I don't feel like I am living. I am "coping". I am surviving. I am living in pain and discomfort. The wheels in my mind are running, rolling, looking for the next dietary solution to experiment with - do I alkanize my diet, drink raw vegetable juice throughout the day, take Colostrum, Collodial Silver? Do I switch boxing out for Yoga? Do I ditch this all and move to a healing biosauna in Baja California to heal once and for all? Do I say fuck it and move to Congo and just try to survive on painkillers and joints? Do I continue to cope and survive through two years of grad school? Will I come to realize that I can't hack cooking all my IC meals and dealing with the pain and discomfort and stay on top of my Master's program?
As I have said before, my life has changed dramatically. I see now the person I was before and how I could have been more careful - how I tried to heal myself from repeated infections so desperately, swallowing every supplement and drinking every tincture, and how I ultimately destroyed the lining of my bladder. This tiny little mucous lining is the source of so much grief for me. My main goal in life has now become how to rebuild this lining. To regenerate something I destroyed. I ask crazy questions to myself like - what do I need to consume to produce mucoa? Should I be eating nettles all the time? Boiling broth and breaking my chicken bones so the marrow can seep out? Boiling chicken feet as one lady friend recommended?
It's extremely difficult to live like this day in and day out. What began as just frequency has evolved to chronic pain. What I thought I could control with diet, has evolved to waking up in the night and several times in the morning to an intense urgency and pressure in my pelvis. It is how I come into consciousness everyday - it is the first sensation I know. Sometimes it is in my dreams as well, the pressure, the pain. To feel it in my body all day 24/7. And its evolution. Some days it feels like an infection that is seeping into my organs, a painful throb throughout my pelvis, a heavy weight hanging from my crotch, some days a burning UTI sensation, some days a feeling of retention - a horrible feeling like I cannot go even though I feel intense pressure and pain. It's just strange to live day in and day out in debilitating pain and not really know what's happening inside you. I mean I think I know but I don't know for sure...
Which brings me to the real question I want to address here - to Cystoscopy or not to Cystoscopy. I'm scheduled to go under anesthesia next Wednesday the 24th for a Cystoscopy. I think I'm going to cancel. It seems like the cons just out-weigh the pros here. The cons being - I could make my condition worse, do more damage to an already very painful condition. The pros being - I get a picture of my bladder and how fucked up it is... I get a "diagnosis". I used to think I needed this diagnosis for people to take me seriously. Now I stopped caring about other people and started caring about myself more. Protecting myself.
I have projects up to my ears. An overdue photo project due last week. A video project due in a couple weeks. Another one due a week later. And then there's life - getting to the east coast to see my family. Getting into the Tassahara Zen Center so I can be alone for a month or so, so I can collect myself, so I can be in the world again.
The last thing I want to touch on is Awareness. Nobody fucking knows what this condition is because nobody talks about and yet hundreds of thousands of women in America have it. Ever since I came down with this crap I've been determined to start a support group - raise awareness about this shitty condition, and get political. Apparently September is IC Awareness Month - as trivial and meaningless as that sounds, I hope I can get involved. I did just get into one of the best doc film programs in the country - and I did just declare war on the Western medical establishment. I know firsthand that I wouldn't be where I am now if I had had a primary care provider who knew my history of UTIs and all the supplements I was taking to try to heal myself. I also know that if it weren't for the thousands of other women suffering from chronic pelvic pain and for the thousands of women who will experience their first bout of IC this year or next year - that I might not be here anymore. This is probably the big reason I'm sticking around. I have an opportunity to save a couple people from this misery. To say hey! Don't overdue it with the cranberry supplements and the Uva Ursi and all that. To say hey! Make sure you get a urine culture that tests positive for bacteria before you go on that 3rd course of Antibiotics! We should address the causes of why these things happen, not blindly stab at them with nuclear weapons. I had had many days where I have said to myself - if this is how it's going to be for me for the rest of my life - then I don't want to be around for that. For now it's much too early to throw in the towel. And besides, I have people who love me and a lot of awareness spreading to do, so at least one less young lady has to have her life ripped away from her by a painful pelvis.
As I have said before, my life has changed dramatically. I see now the person I was before and how I could have been more careful - how I tried to heal myself from repeated infections so desperately, swallowing every supplement and drinking every tincture, and how I ultimately destroyed the lining of my bladder. This tiny little mucous lining is the source of so much grief for me. My main goal in life has now become how to rebuild this lining. To regenerate something I destroyed. I ask crazy questions to myself like - what do I need to consume to produce mucoa? Should I be eating nettles all the time? Boiling broth and breaking my chicken bones so the marrow can seep out? Boiling chicken feet as one lady friend recommended?
It's extremely difficult to live like this day in and day out. What began as just frequency has evolved to chronic pain. What I thought I could control with diet, has evolved to waking up in the night and several times in the morning to an intense urgency and pressure in my pelvis. It is how I come into consciousness everyday - it is the first sensation I know. Sometimes it is in my dreams as well, the pressure, the pain. To feel it in my body all day 24/7. And its evolution. Some days it feels like an infection that is seeping into my organs, a painful throb throughout my pelvis, a heavy weight hanging from my crotch, some days a burning UTI sensation, some days a feeling of retention - a horrible feeling like I cannot go even though I feel intense pressure and pain. It's just strange to live day in and day out in debilitating pain and not really know what's happening inside you. I mean I think I know but I don't know for sure...
Which brings me to the real question I want to address here - to Cystoscopy or not to Cystoscopy. I'm scheduled to go under anesthesia next Wednesday the 24th for a Cystoscopy. I think I'm going to cancel. It seems like the cons just out-weigh the pros here. The cons being - I could make my condition worse, do more damage to an already very painful condition. The pros being - I get a picture of my bladder and how fucked up it is... I get a "diagnosis". I used to think I needed this diagnosis for people to take me seriously. Now I stopped caring about other people and started caring about myself more. Protecting myself.
I have projects up to my ears. An overdue photo project due last week. A video project due in a couple weeks. Another one due a week later. And then there's life - getting to the east coast to see my family. Getting into the Tassahara Zen Center so I can be alone for a month or so, so I can collect myself, so I can be in the world again.
The last thing I want to touch on is Awareness. Nobody fucking knows what this condition is because nobody talks about and yet hundreds of thousands of women in America have it. Ever since I came down with this crap I've been determined to start a support group - raise awareness about this shitty condition, and get political. Apparently September is IC Awareness Month - as trivial and meaningless as that sounds, I hope I can get involved. I did just get into one of the best doc film programs in the country - and I did just declare war on the Western medical establishment. I know firsthand that I wouldn't be where I am now if I had had a primary care provider who knew my history of UTIs and all the supplements I was taking to try to heal myself. I also know that if it weren't for the thousands of other women suffering from chronic pelvic pain and for the thousands of women who will experience their first bout of IC this year or next year - that I might not be here anymore. This is probably the big reason I'm sticking around. I have an opportunity to save a couple people from this misery. To say hey! Don't overdue it with the cranberry supplements and the Uva Ursi and all that. To say hey! Make sure you get a urine culture that tests positive for bacteria before you go on that 3rd course of Antibiotics! We should address the causes of why these things happen, not blindly stab at them with nuclear weapons. I had had many days where I have said to myself - if this is how it's going to be for me for the rest of my life - then I don't want to be around for that. For now it's much too early to throw in the towel. And besides, I have people who love me and a lot of awareness spreading to do, so at least one less young lady has to have her life ripped away from her by a painful pelvis.
No comments:
Post a Comment