IC - the "I can" or "I can't" disease

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.

A story of recovery

One of the blogs I follow on here is called WANDERLUSTED: Travel, Beauty, Fitness, Life. This lady Jess lived through a bad case of IC and does a fantastic job telling her story - one of the things that prompted me to tell mine. It's also hilarious.

Be sure to read Part I and Part II
http://wander-lusted.blogspot.com/2012/02/how-i-healed-my-interstitial-cystitis.html
http://wander-lusted.blogspot.com/2012/02/how-i-healed-my-interstitial-cystitis_23.html

And her awesome FAQ page here, because she got so many responses from her post: 

http://wander-lusted.blogspot.com/p/ic-faq.html

This is a great story because it's so real. 19 year Jess who comes down with IC and cures herself in 4 years. I CANNOT imagine going through this as a 19 year old. It has shaken me as a 30 year old, with all the resources that I have available to me. And Jess makes it seem like there is a real roadmap to recovery. She sums it all up like this at the end:
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So to summarize, this is how I went from being a girl crying on the bathroom floor to leading a normal life:

1. Strict elimination diet
2. Omitting all caffeine and acidic beverages
3. Avoiding products with strong dyes or fragrance/essential oils
4. Drinking 2-4 ounces of aloe juice every day
5. Drinking a cup of herbal tea whenever I felt a flare or symptoms of a UTI

Unfortunately there is no magical cure for IC. But I feel that if you are strict with your diet that you can achieve a very manageable condition, and perhaps even heal, like myself and lead a perfectly normal life.
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It took her four years to return to a normal life. But the point is SHE RETURNED TO A NORMAL LIFE. Many people with IC never do. My hope is that I can heal up even faster because I was able to find information and stories like this so quickly and begin my fight sooner. Speaking with my friend Rachana who struggled with her IC for years, I told her that I wish I had a roadmap - a timeline, where I could tell myself that by 2015 that this will be all over. That I will graduate from film school and go back to Africa and working on films and doing anything. Go back to that bubbly, wild, life-loving spirit I was before this hit. She responded to me: "YOU WILL BE PAIN FREE IN 2015! You have to visualize that! In fact, you will be in pain free before 2015! By the end of this year!"


Cultivating hope has been my mantra for some time. I've only been experimenting with the diet for a month and a half now, so it's early in the game, but my hope is that in the next 6 months I can start to feel some real relief. That I won't be that girl running to the bathroom four times during a one hour class. I don't expect I will be able to drink for many years. That's hard too, but I can deal with that. I have a very important goal that I am dedicated to - being able to return to the person I knew as myself. Getting my identity back. And getting back to life.

I would like to introduce.......... Interstitial Cystitis (updated)

Yours truly at 30 years of age, with IC.

A humorous depiction of my lovely condition. Thanks for reading.

This is going to be an ongoing topic of discussion for me. I'm not going to sugar coat it, only present things as they are. The truth is I am totally overwhelmed. My life changed dramatically 4 months ago and ever since I have been on the most difficult physical and emotional roller coaster. That sounds very dramatic. But I have been pushed to the breaking point most days. As it stands, I have no guarantee that things will change for me, but I cultivate an awesome amount of hope, because I believe that I can heal myself. I have to believe. If I want my life back, I'm going to have to cook almost all my meals for at least the next six months and adhere to strict elimination diet - a plan where I take very good care of myself, and be extremely cautious not to slip into the deep end. It is a very complicated balancing act. I have Interstitial Cystisis. I don't know where to begin.

Basically - Interstitial Cystitis or IC is kind of an umbrella term for when your bladder breaks and the doctors don't know how to fix it. There are several theories about what it actually is and what causes it - whether it's repeated infection that breaks down the bladder lining, an auto-immune disorder where your body basically attacks your bladder and you produce inflammatory "mast cells", or simply a bacterial infection that our urine cultures can't detect. I think most Drs however can agree that IC usually involves an inflamed and sensitive bladder due to the fact that the mucous layer of my bladder has worn away or been scarred. And so in a nutshell everything I consume comes in direct contact with my bladder which gets very irritated and inflamed and then I actually grow more nerves so I develop a kind of "pain memory" down there. I'm in a lot of discomfort almost all the time, sometimes a great deal of pain, and I constantly feel like I need to use the restroom. Sometimes I feel I need to run to the bathroom every 10 minutes, on a normal day its about every 30 min. On a good day I can hold it for up to an hour, but that usually causes me a lot of pain afterwards, and more frequency to follow. In terms of diet I can't eat and drink a great deal of things including coffee, alcohol, most fruits, anything acidic, vinegary, or spicy. And here's the catch........ there is no cure. 

This is probably the most frustrating thing I will ever have to deal with in my life. Learning that it is chronic and there is no cure comes with a lot of emotional ramifications on a daily level. The hope that I cultivate is based on other people who have had this condition and have mostly recovered. And there are remarkably a lot of stories of people who have recovered, and even books written about it. So I'm not totally alone, but given that I've only personally met two people that know what I'm going through because they've been there, it makes for a very alienating condition.

So I am now my own clinician. This is what the one Bay Area woman with IC passed down to me - you are now responsible for your own health and you will have to keep a bladder diary pretty much chronicling what you eat and how you feel. You will start with eating just a few items and then after two weeks or so begin to add in one item at at time. Elimination diet.

At this moment, my bladder is inflamed and my crotch throbs and I feel like I have to go. It's hard to know if its the leafy greens I ate with my breakfast or the acupuncture herbal tea that I drank, the flouride in my drinking water, the combination of everything, or just my damn bladder itself being upset in general. That's part of the problem. IC patients really need to go on a strict elimination diet to determine what is causing their pain and what their "triggers" are. Dr. Matia Brizman out of LA, when she starts patients on an elimination diet, she makes them remove drinking water and drink only spring water, as well as taking out things like Flouride toothpaste. Super intense. Thus far I know 100% without a doubt that I cannot have beer, caffeine, chocolate, almost all fruits, anything acidic, anything high in Vitamin C, or anything on the spicy side. Anything artificial usually does it too. As for the rest of it - I'm trying to figure it out every day of my life what might increase my pain and discomfort. 

I have wanted to write about this for ages but I don't know where to start. The last 4 months of my life my world has been spinning. Crashing down. I cry a lot. Almost every day. Sometimes in public. Sometimes in private. I like to imagine myself healed in a couple years. I'm committed to doing whatever I can in the present to return to my regular life in the future. At the same time, I can no longer afford to think about much more than the present moment, as the rest is too overwhelming.

Of the course the flip side of all this is that I have learned a lot. I have learned that my life before IC was pretty fantastic. I can see now how capable I was, what a blessing it was to go through life not being in chronic pain, not having to stress about everything I consume or if I will be comfortable in any given situation, where the bathroom is, etc. My eyes have definitely opened up to how health is everything. 

<<<<<<<<<<<<<< SKIP ALL THIS IF YOU DON'T HAVE IC IT'S RATHER BORING>>>>>>>

Honestly, I've had bladder and UTI problems for many years, including one where I pissed a small amount of blood as a small child, but that was a one-time deal. I think the real problems started when I became sexually active. In college I didn't get too many infections. My senior year however, I had a boyfriend and got an UTI. I drank so much cranberry juice trying to get rid of the infection that I literally shat myself running to the bathroom. It was then that I was dawned with the nickname "uti". A sad omen for me. Living in Russia in my early 20s, I came down with a few UTI's and a Kidney infection and was in bed for two weeks. An ultrasound showed my Kidney was inflamed. I remember the lower back pain and remembering feeling like I couldn't sit or sleep in certain positions. But after that I returned to a normal life.

After Russia I moved to Egypt for two years, and I remember having a particularly painful UTI at Temple Karnak in April 2010, crying in pain when the bathrooms were not yet open because it was too early in the morning and I needed to go so I ran and found a place out in the open to go where no one would see me. I also remember trying to do Yoga through the UTI and being in horrible pain and returning home to get in the bath before I went out to get meds. At one point I was getting extremely uncomfortable lower back pain, making it really difficult for me to sit at the desk and process my photos for work. I went to the local pharmacist who asked me a couple questions and told me my lower back pain following a UTI was likely a kidney stone or something along those lines. He sold me Moxiflox, a flouroquiloline and some very strong antiinflammatories. The Moxiflox or the unfortunate combination of the two gave me a very serious panic attack, which left me up shaking all night in terror, unable to sit still, and shaken up for more than three days afterwards. Luckily the UTI and back pain went away.

I moved to California in July 2010 and got together with my boyfriend started to get UTI's quite regularly. Often I would go back and forth between a UTI and a resulting Yeast Infection from the UTI antibiotics. It became a vicious cycle that many women are familiar with. Often during these bouts with UTI's I started to fight them with Cranberry juice, but when that didn't work I moved onto other things: Cranberry pills, which are very potent, Uva Ursi, shots of Apple Cider Vinegar, Stress tabs, Vitamin C tabs, you name it. All of those things that I just listed are incredibly bad for someone with IC - as they all cause tremendous pain and damage to an IC bladder. Looking back, I wish I could have known in hindsight what was going on - I could have seen an acupuncturist or a nutritionist... attacked the problem differently... I could have changed my diet... something, anything, but firebomb my system with antibiotics and supplements that were destroying my bladder lining.

So, I can say that the IC symptoms probably began at the end of 2011 when I got what I thought was a UTI (burning urination, frequency) but 3 courses of antibiotics later, I was still running to the bathroom constantly. Now here's the catch. This time I had some Macrobid leftover - half of a week's course, I took 3 days to releave my symptoms, and then asked to have my prescription refilled to finish the course. This is all without a pee test. No culture. I think I returned to the free clinic at this point and they put me on Cipro. I don't remember if I had a clean urine culture at this point, but I went through with the Cipro, and I was still in agony. I was drinking pure cranberry juice. I bought into health insurance because I was desperate. I went to the real Dr. and she tested my urine and it came up CLEAN. I constantly needed to go - I would go the bathroom, urinate, stand up to wash my hands, and desperately feel like I needed to go again. Bad. I can't really emphasize how maddening that feeling is. The Dr. was stumped. But prescribed me Bactrim, not knowing what to do, assuming that maybe it was a different strain of Bacteria that the urine test wasn't picking up. I called my Uncle. 3 courses of antibiotics in a row, my body was starting to feel really weird, creaky, lethargic. I told him about the clean urine culture. He told me to get off the antibiotics as I didn't have an infection. So I did, probably stopped drinking cranberry juice too. And after a couple weeks, things eventually cooled down and I was able to resume a normal life.

This happened again once more in 2012. And then again over Thanksgiving 2012, when the shit finally hit the fan. I tried to cope with it this time - assuming that it would eventually return to normal - like last time. Come December, I was starting to lose my mind. One day I had to leave my job at the Berkeley Farmers Market because I just had to run to the bathroom every fifteen minutes and I was in a lot of pain. I left in tears and road my bike to the clinic to get tested, all the while having a premonition that something was different about this. Unlike a UTI or Bladder Infection, I wasn't having the classic burning sensation when you pee. Instead I felt a pressure in my bladder and the overwhelming need to go constantly. My fears were confirmed. They didn't find much in my urine. But they figured it was just an infection anyway that the tests didn't pick up on so they prescribed me Cipro and gave me some Diflucan to take with me too. I flew home for the holidays, concerned that my family would once again be disappointed with me in this poor state. The same way I was for Thanksgiving 2011.

I remember the flight very well. I got an aisle seat knowing it was going to be extremely tough for me. I was very nervous and uncomfortable and on the verge of tears. I asked for apple juice and water, unaware that even something as innocent as apple juice causes flares for someone with IC... My mother picked me up from the airport, and I tried with all my might to act normal. But eventually I broke down.  I knew everything was not OK.

I didn't take the antibiotics. I was pretty sure I didn't have an infection, but didn't know what to do. After a couple days of increased discomfort, I called the lady from the clinic and admitted I hadn't started the antibiotics yet, but that I was getting some really intense lower back/pelvic pain which I was worried might be Kidney related. She encouraged me to take the Cipro, reminding me of how serious Kidney Infections are - how they can spread to the bloodstream, etc. I started the Cipro. At first nothing. Still uncomfortable. Still running to the bathroom constantly. Still depressed and stressed out. Strangely enough, on the third day I remember feeling almost normal. I started writing in my journal again about my plans to go to Congo this summer, get a new DSLR and start working on a story there with my filmmaker friend. I felt a great deal of relief. The next day, however, I went back to feeling shitty all over again, bladder pressure, running to pee constantly.

It wasn't until I got back to California that I finally got a call back from the clinic, regarding my urine culture. Again, my fears were confirmed. The lady at the clinic left a message saying she was so sorry but they found nothing really wrong with my urine sample, but that I should consider looking at Interstitial Cystitis as a possible culprit. It was what I had feared all along.

A BRIEF TIMELINE OF THE ONSET OF IC

These are the more recent incidents I can dig up. I'm sure there's a million others that I don't have record of.

• Jan 2010 UTI, followed by antibiotics, lasted nearly 2 weeks?

• Aug 2011 UTI lasts a week, Macrobid, cranberry pills, cranberry juice, pain comes back, so followed with Cipro, more juice, more pills, dandelion tea. This is followed by feeling soar in my seat. Pain over my tailbone and centered above my buttocks.

• Nov 2011 - Dec 2011 UTI, Macrobid, no success. lower back pain over sacrum. Cipro. No relief. Urine culture coming up clean. Dr. stumped. Prescribes Bactrim. Called uncle. He said if you have no infection get off the pills. Got off antibiotics. After several weeks, achieved some normalcy. I plead and demand to see a Urologist at Highland Hospital where I am covered by my poor people insurance. They give me a referral. I never hear back from them until over a year later. 

• May 2012  - UTI, Cipro, Vitamin C, very potent Cranberry pills (4-6/day), D-Mannose and Uva Ursi. Followed by pain during intercourse. Lower back pain. Feel like I can't empty my bladder. Tried Acupuncture for first time. First time I start to suspect IC. I read on this website: "IC is often misdiagnosed as a urinary tract infection. Patients can go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. Symptoms: Pain during intercourse, Pelvic pain, Urinary discomfort, Urinary frequency (up to 60 times a day), Urinary urgency." Gulp. 

• June 2012 - I start to suspect that the cranberry pills and acidity was making me worse. I am still peeing constantly. Sex without lubrication also makes me flare up. Begin to shy away from sugar, caffeine, and cranberry pills. I write to my mother, "When I wake up in the morning, I can really feel the burn from my urine hanging out in there all night." My mother suggests that maybe it is emotional. I admit I may not travel so much if my bladder problems continue. Makes it too difficult. 

• November 2012 Persistent Yeast infection. Try Monostat 1. The insertion of this thing into my vag seems to make me burst in pain. Burning pain. Way worse than the yeast infection. Also the yeast infection does not go away. I go on Diflucan. Extreme diarrhea. I feel weak and awful. This is Nov 13-18th. Maybe it wasn't a yeast infection at all...

• November - December 2012 - The frequency starts on Thanksgiving Nov 22nd. Similar to the symptoms of a UTI but something feels different this time. No burning when I pee. I consider maybe this is IC but don't want to consider it too hard. Urine comes up clean upon visiting the clinic, they send my urine for culture for further inspection. Fly home for the holidays. Take Cipro. Feel relief on last day. All symptoms come back. I fly back to California. My urine culture comes up negative. They suspect IC. I start to leave urgent and persistent messages on the voice machine of the Urologist at Highland Hospital, begging them for an appointment.

•  January 2013 - Urology Apt 1 - Dr. prescribes Maalox and asks for a X-ray next time. 

• February 2013 Urology Apt 2 - Xray reveals I am very constipated still. Dr. orders bladder and thyroid ultrasound and cystoscopy. I begin IC Diet.

• March 2013 Urology Apt 3 - Cystoscopy fails as my parts are too small and tight and Dr. is afraid to hurt me. Order cystoscopy under anaesthesia for end of April. Urology Apt. 4 - Ultrasounds. I am not told the results. 

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Looking back, it's easy for me to see now that if I was with one Dr. this whole time, or if Highland answered my pleas to see the Urologist back in December 2012 when I desperately needed to, I would have been diagnosed with IC back then and I could have controlled it with diet. Unfortunately, I was allowed to attack my bladder for another year with antibiotics, yeast meds, and acidic foods, drinks and supplements that may have made my condition irreversable. To think that I could have simply invested a couple grand in getting myself to a reliable Urologist who was versed in IC breaks my heart. I've come to terms with this. But it's like that question you ask old men in jail - if you could say one thing to the young man who was you what you tell him - I would have told me to dump all my money into finding an IC knowledgeable Urologist and fought my condition while I still had time...

I think when anyone comes down with this condition, there is a lot of emotional baggage that comes with it - that in combination with the physical distress, can be enough to push anyone over the edge. I can say from my own experience about the past four months is that the main thing about this condition is how alienated it made me feel. Alienated from my friends. Alienated from my mother. Alienated from my sister. Alienated from the new people I see at grad school orientation. Alienated from my lover. Alienated from myself. Alienated from the food and drink put in front of me. Alienated from these words as I write them because I can imagine how they sound to someone who doesn't understand what I am experiencing. I was once a person so excited about life. I was really getting on top of it. Learning to love myself and all my achievements and potential. Preparing to head to the DRC and get a lead on a story to make a film. I just got my new passport and was even looking for a subletter for the summer. I got into grad school. And then this.

As soon as I came down with IC, I had to stop taking all my supplements because my bladder can no longer deal with ingredients as simple as ascorbic acid which is found in Vitamin C products or in my Fish Oil, in the Adrecore I was taking in the morning and the Travacore I was taking at night. Even my Probiotics are on the "No" list for now. The only supplement I am taking is Magnesium - which is for constipation and clenched muscles down there, which I'll get into later. All the good things that were balancing my digestion, my nuerotransmitters, my everything, poof. Overnight.

I'm guessing anyone who has read this far is bored by now or losing interest. I understand, if I were on the outside, I would have lost interest too. Who wants to spend their time reading about this and thinking about this? That's precisely why I'm so upset. I had planned to be in Africa right now shooting photos and video! But this is what I'm going through and writing about this is just the beginning of a long healing process that I need to go through.

One of the strange things I've been noticing about my IC is that it seems to be getting pickier and pickier. At first I just seemed to have frequency. I coped with that for years. Then the frequency got very intense. And then eventually I started to get pelvic pain, urethral burning, clenched muscles, hesitancy and a host of other symptoms including painful sex, constipation, etc. There is a lot of science to back this up this spiked increase in pain and sensitivity. IC patients often see a breakdown in the mucous layer that protects a healthy bladder. So everything I consume comes into contact with my bladder and the bladder is like an open wound in my body. Unfortunately I cannot simply dress the wound, cover it up, put it aside, and let it heal. Wish I could. Instead it's constantly being bombarded with food and drink and toxins. And so my bladder is actually building new nerve endings, creating further inflammation and that dreaded "pain memory". Super fantastic. Hence the pain seems to be getting more intense. The flares are lasting longer. Sometimes I feel like I am in constant flare. I am having trouble discerning if I am ever not in a flare. I am prepared to do anything to achieve some level of normalcy in this department.

I'm going to stop writing for now, but here's a list of what I'm trying, tried, and what I look forward to trying. And on a closing note I just want to add a few positive notes. First, if you're going to come down with IC, the Bay Area is probably one of the best places in the world to do so. We have a host of alternative healers including acupuncturists, herbalist, massage therapists, etc who are familiar with this shit condition. Two, I have faced this shit directly in the face and told it it will not win. All of the depression issues that have followed me my whole life now seem laughable and I have been forced to look at myself, unable to run from my problems. If I choose to look at it this way, this IC has forced me to grow up, fast. I am no longer the carefree whimsical bubbly young lady I used to be, but I am tackling the ugliest demon of my life - a demon that has forced me to come to terms with all the other shit that used to haunt me. I am on the path of self discovery. God willing I am on the path to health as well.

TRIED

• Hydroxyzine (anti-histamine to control bladder inflamation, started it a few weeks ago and went off it in less than a week because it made me so lethargic. Was sleeping 9+ hours a night on it.)

I AM TRYING

• Strict IC diet as laid out by Dr. Matia Brizman out of L.A.

http://www.icaroadtorecovery.com/diet.htm (this is the old version there is a more updated, more intense version here: http://www.icama.org/iaic-diet

• Acupuncture 2-4x month (when I'm not beating myself up for spending money on it, at first I was going twice a week for a month - that equals $600. )

• Painkillers and Pyridium for pain management

• Hot Epson baths and heating bad for more pain management, and clenched and aching pelvic floor

• 2-4oz of Aloe juice a day (the real stuff, not the stuff you see at the grocery store)

• Hell of exercise, meditation, and chamomile tea

And a list of things I have not tried yet. Reasons to be optimistic and believe that my life may some day go back to normal....

THINGS TO TRY

• Marshmellow root (very excited about the pain relief this might help with)

• Prelief (anti-acid for IC patients, just got some in the mail) 

• Baking soda in water?

• Bikram Yoga (probably better for me than kickboxing right now, so will probably switch next month)

• Physical therapy (starts Monday morning)

• Weekly meetings with other women who suffer from chronic pelvic pain (starts Sunday)

Please help me.

A small miracle occurred. After waiting over 13 months for my "referral" to see the Urologist at Highland Hospital to go through and become an appointment, my prayers have been answered. Right at my breaking point. Tomorrow morning. 9am.

Silent Reflux

 


Something unbelievable has happened in the process of writing and rewriting these damned grad school application essays. I was about to hit the sack tonight, and I reconnected with someone I haven't spoken with in years. A very special, amazingly talented musician friend. We were chatting for hours online. Turns out he has come down with a horrible disease. It's called "Silent Reflux" and basically your stomach acid travels north to your throat and destroys it so you can't hardly eat, can't speak, and you are in a lot of pain and have to sleep sitting up. He cannot make music anymore. He is on a shit ton of scary medications and is losing hope... My whole essay has been going off about how I've been drawn to the disenfranchised as a storyteller, "courted the underdog" was my phrase, and telling the stories of silenced people. Well, shit. This is too fucking literal to be true. I told him from the moment we started talking that I will have to make a documentary about him. It only clicked later how he is the most literal example of a "silenced person" that there is. Weird coincidences like this keep happening. God, are you trying to communicate with me?

of course

i will walk into the room and you will not recognize me.
i became a woman this spring -
the cultivation of 29 years.
you push your glasses up to your nose like allen ginsberg
all of your life you have honed a craft,
finely tuning your tongue to speak revelations
and epiphanies, a dime a dozen
of course i cannot impress you with mine.

the human experience

documenting the human experience. the human spirit. that is what i am doing and that is what i want to do with my life.

remember to breathe in. and then to breathe out.

missing

i miss everyone and everything

the now thoughts

 

 

i think i'm gonna tutor kids

be a teacher

and then maybe get my masters in multimedia journalism

and make multimedia pieces using audio, stills, and video

i think that is my jam

and also become an amateur kick boxer

or do none of those things and all of those things

and have a good time of it

everyday awakenings

sometimes i paint a grim picture when the picture is not so grim. yes i am suffering from chronic headaches, migraines, and pressure in my brain. yes i get an aura that takes over the entire left side of my vision when i do push-ups. but i will see the dr. tomorrow. the things you don't hear about is how i sparred naked with my man until 1.30 in the morning until i knocked the bulb out of his light and the room fell fully dark aside from the blue glow of the mac screen. what you do not hear about is manning the telephones at the radio station or getting stoned in the parking lot with the most exquisite human being i know. you don't hear about the late-night banter about life, the backyard bonfires, kick-boxing, and biking everywhere. yes sometimes the world closes in on me. i never made it to the river this summer, it was a tragedy. i never audited arabic. i never got the job at Berkeley or MECA or Global Exchange. i lost my waitressing job, the farmers market turned me over twice, and the heavy lifting job hasn't come through. but i'm reading the autobiography of Malcolm X and dreaming of the day when my head stops hurting so I can pick up and go back to Africa. So I can take that temp job in Sudan photographing for the UN. So I can go back to that invincible person I once was before I gave my heart away. To men.

We are all responsible for our own happiness, don't get me wrong. I take full responsibility for the last couple weeks of panic and depression. I will run now everytime the fear hits me. The fear of life. The fear of shooting that wedding next year or shooting the guys at the kick-boxing gym. The fear of the fact that I've been on unemployment for a year, that I don't own a car, and I haven't fully come into my own.

Yes I crave the life-partner, the stability, the home, the job, the car. But moreso more than anything I crave self-contentedness, self-assurity. Confidence. Pride. Self-respect.

Hear me out all friends who have known great desperation and most difficult times. WE ARE ALL IN THE GUTTER at moments. Sometimes we cannot always see the stars. But they are burning up there to remind us that the impossible is only possible when you can convince yourself thus. That is, we can have it all, all we need to do is hold onto hope. Pretend the world is a nicer place than it is. Put all our chips down on the optimists, on the people who take the time to say thank you and please and ask you how you are doing and call to check in on you. There is so much to learn from those people. 

let the good times roll

happy 1 year anniversary

start over

i would like to start all over again
from this hardest year of my life
with all of its heartbreak and alienation
illness and pain
i am ready to bury this person i am calling myself
this person who is calling friends and friends are
finding excuses not to visit or see or call
this person no one wants to know

the hard truth

so you can go ahead and tell your sons and daughters that the hardest thing that they will ever know in life is this: you will love one person fully. you will pour all of your love into that one person. they will be the secret behind your smile, your laughter, your confident stride, the whistled tune you carry with you as you walk the streets. it will not be the center of your attention all the time, but it will be the raison d'etre, albeit quietly. 

and this person that you pour your love into will someday throw it all away at a moment's notice. it will take you aback. months and sometimes years of love. it will be hard to swallow at first. impossible to accept. why? what for? but they will throw it all away and close the door on you. they will not want your words, they will not want to know the details of how they have hurt you. they will simply walk away in silence.

then you will have to find some way to continue being in the world without your smile, your laughter and your confident stride. you will feel ugly. tired. you will have to perform meaningless tasks like going to the grocery store and looking for jobs. this pain in you will not go away for many months. your appetite will sometimes be shifty, sleep will be mediocre. days will get longer. the sun will shine and the world will continue to be beautiful but you will only participate it with great hesitation, sometimes it will be dreadful.

loss is, by far, the hardest thing to accept. mike said it right - relationships are like dreams; when you are in them you cannot see out of them, and then once you are out of them, much later, you cannot believe the state you were once in. well, right now i'm kicking around on the edge of one, but he's pushing me out. trying to hang onto a dream that he says is dead. fumbling.

people always mediate these situations by saying there are many fish in the sea. but when you are hanging onto the one you loved, you cannot have eyes for anyone else. there is no medicine to help ease the pain. there is no 12-step program. no 5 year plan. loss is loss. i have lost someone i love. he says he cannot bring himself to love me. i have about a million words to tell him but somewhere i feel like i'm not supposed to share them. that i'm supposed to keep them to myself. i will probably write a letter, with paper and ink, the old fashioned way.

how this week or this month will transgress, i don't know. i think it will be many months of this feeling of being lost in the world. 2010-2011 has been a strange transition for me. from archeological photographer to unpaid intern. jobless american collecting unemployment. a lady full of love for a man who cannot love her. things can only get better i hope.

DJ Lafleur

On the death of Bin Laden

And how it signifies that we have a long way to go before we come to grips with who we are as a nation. 

This mass patriotism always makes me extremely uneasy and deeply worries me. Especially this, now. these events make America even more blind, make regular citizens once again overlook all the horrible acts that we are responsible for in the name of finding one man in a far and distant land that we somehow feel will bring resolution to what happened on 9/11. Anyone who knows anything about world conflict or any kind of conflict at all knows that the cat and mouse chase will just go back and forth. We have declared some kind of victory for killing Osama bin Laden and have taken this opportunity to act like a bunch of rednecks. Soon, I'm sure, some horrible act of "revenge" for the death of Osama will fall on us, and the cat and mouse game will pick up again where it left off. As my friend Dan Denvir rightly pointed out in his piece

Bin Laden Killing Does Not Vindicate Afghanistan and Iraq Wars

we need to take responsibility for the deaths that have taken place in Iraq, Pakistan, and Afghanistan. we need to collectively as a country realize that we are all guilty of these unforgivable crimes, and we all need to put down our weapons, and find peace in a way that doesn't involve murders. Islamaphobia will go on, probably fueled more by this event. Our military will continue to kill innocent bystanders. Middle Eastern people who have nothing to do with the conflict will die by "drones".

We need to step back and look at ourselves, and this so-called cause for celebration and rejoice of "justice" just takes people even further away. A great deal of Americans are sadly immature, and have equivocated this to some kind of sport, or cowboys and Indians-type game. It is deadly, complicated, tragic, and the longest foreign war in our nation's history has resulted from this "war on terrorism". As one bumper sticker in my Berkeley neighborhood joked "Iraq is Arabic for Vietnam". Often times, it just feels like we have no understanding, as a country, of what we are doing. In any case, Dan, thanks for your honest, home-hitting words. We need more journalists like you. In this day of journalism being called dead, we need you more than ever.