illness as symbolic invitation for bigger change

    "Every illness...is an onslaught upon the person as he or she is. Things have become so bad, and he or she is so alienated from the whole of life, that a very extreme invasion is necessary to break so loosened and liquified that, finally, the LIFE spirit can flow into him or her. To be sick is to be shut off, to be isolated. Every disease is like an invading force trying to destroy our rigid forms and make us whole. With every invading illness comes a symbolic content, and it is the task of the soul to expand itself so that is can encompass the invading images and symbols. This may be a struggle, though ultimately it is not a struggle but an expansive, releasing process as one grows beyond his or her former boundaries.

    The disease won't let us live the old ways. It actually comes to destroy the way we are. The blockages in your respiratory tract, the stiffness in your movements-these exist because of the way you have held yourself. They emerge from the guarded, fearful, cautious posture and a carefulness to control tears, and blushing, and anger and free spontaneous movements. The symptoms are the body crying out, telling you it has had enough. The symptoms will tear you apart at the very places where you have held too tightly.

    When you become ill, it is as if you have been chosen or elected, not as one to be limited and crippled, but as one to be healed. The disease always carries its own cure and also the cure for your whole personality." 

years from now

years from now shit's gonna be good. so good. for now just gotta keep sucking it up. keep taking the baby steps. eyes on prize. I've never been handed a problem I couldn't attack and beat.

this guy knows his stuff:

Pain

Chronic pain.

Unfortunately most of the reports I'm reading, antibiotics doesn't work for folks with Trigonitis. So I'm left waiting for the doc at Highland to email me or call me with some kind of plan. I imagine it could be a while. In the meantime I am in pain. Sometimes the diet and Ibuprofen keep it under control enough that I can go to work and fake it through the day. Today I'm home editing a video due in a week and the pain is bad.

I can't live like this forever. Feeling like I have no options. I have lost my social life. My athleticism. My ability to travel. My ability to eat and drink like a normal person. My peace of mind hangs on sometimes. I still have my partner, however dysfunctional our relationship. I have Grad School in the Fall - which I'm not sure how I'll make it through. I don't know quite what to do a lot of the time. There's only so many Ibuprofen you can take. Hot baths. Menthol patches. Physical Therapy sessions. It's been 6 months. Sometimes I feel like I've been tortured for 6 months. Like I died and they kept on going. That sounds dramatic.

My job is to be allergic to self-pity. To be conscious of it and smile at it and nod and keep going. I feel utterly helpless, but I keep going, hoping that some wave of hormones or some Kidney evaluation will send me to a new medication that will give me some relief. So I will keep waiting.

Body Update

OK. So at the moment it looks like IC is not the culprit, but Trigonitis, plus a kidney issue. This is my hope, anyway. My cystoscopy did not display as a typical case of Interstitial Cystitis, instead it showed Trigonitis - white inflamed cobblestone pus around my ureteral orifices - that is the ducts where stuff from my Kidneys comes. Basically the triangular region of your bladder where your ureters connect - called the "trigon" takes on almost a scaly appearance. According to Wikipedia they don't know what causes it and how to treat it, but other tests show that many people find relief from Doxycycline - which is extremely exciting for me, which means I may have the opportunity to assume a normal life, won't be in constant pain, suffer from Pelvic Floor Dysfunction, painful sex, won't have to run to the bathroom constantly, and will be able to eat and drink like the rest of the world. I'm going to stick with this optimistic view and assume I can heal, instead of whatever Wikipedia told me. It may be naive however as some people suffer from Trigonitis their whole life with no relief. I found this blog page about it in Spanish: http://trigonitis.blogspot.com/p/mi-experiencia-personal-con-la.html

The scaly appearance of this trigone area of my bladder I associate with the following. Basically the skin of that part of the bladder is different from the rest of the bladder, biologically. And it basically wasn't robust enough to stand up to the infections or whatever my Kidneys are dishing out to it, and thus the normal quality of my tissue cells matured and took on the appearance of white scaly blobs. Yeah. 

Here's the hopefully internet thing about Doxy and Trigonitis, but it seems to refer to patients with Trigonitis that has not develeoped too far - not like the Spanish blog above where the patient had it for over 17 years (gulp). I'm going to assume I belong in the category below - potentially treatable - given that it didn't show up for me as a chronic condition with Pelvic Pain until November 2012. 

"Several antibiotic regimens have been used to relieve lower urinary tract symptoms in patients with pseudomembranous trigonitis. Recently, Burkhard et al. [15] studied the efficacy of doxycycline in 103 such patients.  They received 100 mg doxycycline twice daily for 2 weeks, followed by 100 mg once daily for another 2 weeks. In 30% of the cases complete response was recorded while 41% of the patients reported improvement of the symptoms. In 8 of the 31 patients that consented to followup cystoscopy pseudomembranous trigonitis resolved completely while in 12 cases a decrease in the degree of squamous metaplasia was revealed." (http://www.hindawi.com/journals/au/2010/269254/)

In the 5-10 minutes that we had to talk, my Urologist (Michael Jacobson, head of Urology for Alameda County) said he wasn't concerned about the Trigonitis - sees it all the time - it was the strange thick mucus-like appearance of my urine during the Cystoscopy that disturbed him. He wanted to order a CT Scan. He had a couple suspiscions - First, a Matrix Stone in my bladder. Second, Renal TB - meaning Tuburculosis that spread to my Kidneys. Third, Hematobia - a parasite that shows up as a chronic bladder infection, but is actually some worms laying eggs in your bladder. He seemed to get excited when I told him that I had lived in Egypt for a year and a half and I did get in the Nile. Now I'm realizing I was also in the Nile in Uganda as well... anyway, Doc ordered a CT scan to check for matrix stones or TB or signs of Renal Disease, and during that hour or two that my Scan was ordered and I got it, I saw my life flash before my eyes. I saw them finding the matrix stone or evidence of TB or whatever, just something treatable by antibiotics. I saw myself going to Congo making my dream film, having new relationships, generally going back to being the awesome person I used to be. Independent. Happy. Healthy. Yeah.

Well, the Doc saw nothing except that I was very constipated. But then he did a standard old urine test with the paper dipstick and said he's never seen anything like it - said the protein level is off the charts. Which indicates to him that something is up with my Kindeys. I asked him to give me a number, he said simply "off the charts". So perhaps that Kidney infection I got in Russia 5-6 years ago and self-medicated with a friend's antibiotics was never resolved. I never did see a Dr. for that - and I did have a lot of lower back pain issues... So Dr. Jacobson said he needed to consult a Nephrologist and do more work. Hopefully I will hear from him soon and we can get to the bottom of this. This is turning into some page turning Indiana Jones Saga of my pipes. They also biopsied the lump in my thyroid gland - so hope to have answers on that next week. Given that trigonitis pretty much exclusively happens to women of child-bearing age (me:30) and that they suspect hormones might have something to do with it, I dont think it would be crazy to find out there's some connection there.

One more thing, many patients with IC start out with a diagnosis of "Trigonitis" (the symptoms and diet are exactly the same) and then discover under a Cysto with Hydrodistention ( where they stretch out your bladder with water to look at it ) that they have IC. I'm going to pretend like I just have Trigonitis and hope that I can just recover from this.

Given that the two are pretty much identical in terms of symptoms a lot of people suspect IC at first too:

http://www.empowher.com/community/ask/why-there-very-little-information-about-trigonitis-and-what-can-i-do-about-it 

Then you find out what you have, you google it, and there is almost zero information. I just have to believe it will heal. BELIEVE.

I'll upload Cysto pics soon.

Feelin' good feelin' great how are you

Mandatory cheesy picture taken for loved ones waiting patiently for good news.

Successful Cystoscopy today under anesthesia at Highland Hospital. For those who don't know what a cystoscopy is - it's when they stick a camera on the end of a cathetar and stick it up your urethra into your bladder. Yay! What's even better is that Dr. Jacobson (Head of Urology for Alameda County) didn't have to dialate my urethra, thank god, and didn't do a biopsy - that's when they steal a snatch of your bladder flesh for the microscope. He basically asked me if I wanted the biopsy, even though I assumed that was part of the deal. I questioned him about whether he would get it done if it was him and he said "no" straight up. Because he thought the chances of having bladder cancer with my history are slim to none and the biopsy could give me more symptoms, do more damage, and that I could always come back to do a biopsy if they suspected bladder cancer. Usually, he told me, the biopsies didn't really tell them anything at all. In terms of treatment, he reiterated that I should give Flomax another shot, a drug usually given to men for enlarged prostates that made me feel like a zombie. Not so sure about that one. And Quercetin, a powerful antioxidant found in plants and which has been shown to have amazing medical properties, such as potential anti-inflammatory and mast cell inhibitory properties - mast cells being the thing that causes inflammation in IC (Interstitial Cystitis - my new partner in life) and Fibromyalgia patients. And apparently much placebo-blind research has shown that this thang helps IC patients recover. So I'm on it. Also considering Wobenzym again, if my bladder can handle it, we'll see. 

Anyway, I was cool and relaxed till the IV man couldn't get into my vein and for several minutes my vein kept rolling until finally my vein blew on him and he had to have the anesthesiologist stab me in my arm instead. Ugh. And then she had some trouble with that, commenting on it the whole way as she kept fidgeting with the needle. At that point my cool was gone and I started to tear up and got the shakes, which remained with me until they gave me the mask and I went under. . . I remember rolling down the hallway in the bed feeling like every film scene that opens with that perspective looking up at the ceiling lights, only this time, I could feel the cool breeze of the air moving all around me and felt vaguely like I was going to Heaven, where I promised I would say what's up to my Dad.

Funny thing about anesthesia is you don't remember falling asleep and you don't remember waking up. I remember only being spoon-fed ice chips by a beautiful dreadlocked man and asking him two questions, which he told me I already asked him 3 or 4 times already. My first question being - is my boyfriend here? Yes honey, he's in the waiting room. And were they able to do the cystoscopy? Yes, honey, they were. You asked me that already.  I started grimacing as I woke up a bit and had some urethral pain, my nurse asked me what level of pain it was - to which I replied 7 and he immediately gave me morphine straight into my IV, which I felt shoot into my neck and down into my body- like getting into a hot bath of quicksand. Whoaaaaauhhh. I don't need all that morrrpheeen, but he emptied the whole thing. And my pain disappeared. AND I got to pee in a bedpan for the first time. Bonus. With some minor bleeding.

Dr. Jacobson gave me some neat pictures from inside my bladder. They aren't pretty pictures, but he said "now I can see why you are in pain." For someone in chronic pain who doesn't look sick to anyone on the outside - that's kind of a huge relief. I'll go into more details about the results of the cystoscopy later, as the results were described to me after I came back to consciousness and I don't remember everything. But basically I have some areas where there were dense spiderwebs of blood vessels - red spidery vascularity, as well as these white inflamed blobulates of flesh on my bladder at various points. Yeah I said blobulates. These looked particularly disconcerting and unhealthy - not sure what that's all about. One more unusual thing that Dr. Jacobson had never seen before. My urine appeared slimy - thick. More like a gel than a liquid. He wants to look into that so ordered a renal ultrasound for May 15th - basically to check and make sure my kidneys are OK. That's also when I get to talk to him more thoroughly about the results of the cystoscopy as well as my blood tests - to see if my thyroid hormones are ok. Lately I haven't had any energy to do anything - which is unlike me - usually I can kickbox for 2 hours a day and bike everywhere. Lately I can't even bike long distances or drag myself to yoga. And I've got a persistent lump in my throat and another in my thyroid gland that also needs to be biopsied. So yeah, something else is up. Although I'm learning that Adrenal failure is typical with IC, thanks to the book my sister spontaneously sent me in the mail after reading my previous not-so-happy blog post. The Better Bladder Book is a great resource and features a whole chapter on Adrenal failure. Hurrah. 

Another strange thing happened - I have had an unusually excellent week. I haven't been able to say that in a long time. Something clicked in me one night while reading the story of a young woman who went through hell and back and cured her IC and other serious problems, sure it wasn't the first success story I had read, but something about reading this story changed something in me. I think I just came to a decision. I stopped with the whole "cultivating hope" and "I'm trying to believe that I can heal" crap to just owning it. I decided screw all that "hope" business. I am healing. Today tomorrow and everyday after that. That it might take years, but that I'm already on the road to recovery. It's just like that a switch was flipped in my brain and ever since that I've had plenty of pain and discomfort but it doesn't effect me the same way anymore. It hasn't been able to break me down or send me to tears. So far, I own this. So far this good feeling is mine and nothing can penetrate it. Two quotes spoke to me and have become my new mantra(s):

“If you are depressed, you are living in the past. 

If you are anxious, you are living in the future. 

If you are at peace, you are living in the present.” 

— LAO TSU

“Forget everything bad that ever happened before today, it was all a big nightmare. 

My reality is only what I chose from now on.” 

- some other holistic healing naturopath dude

7 hours later, I'm doing great. Matt was fantastic, waited for me to reach recovery and sat and took care of me and then took me straight to Trader Joe's where I had a fantastic time wheeling around in the handicapped motor run cart thing, high on morphine, bumping into stacks of food, staring deeply into the aisles at all the products Fear and Loathing style, and shopping for chicken soup and other IC friendly things. We had a good laugh. I think the other customers enjoyed it as well. The only slightly disconcerting thing was I went to pee and the pain was like knives slicing through my urethra. I survived and hobbled out of the bathroom, and Matt quickly took me to our most visited Sushi restaurant for some hot chicken soup and vegetables. I've gone to the bathroom again since then, and the pain is totally manageable now, so I think everything is going great. Besides a badly bruised hand and some urethral discomfort, it was a great day. I had some fantastic laughs and was very well taken care of. Thank you Dr. Jacobson, Mama, Sis, and Matt for your support! And to my IC lady friends, who know what it takes to beat this monster. Roar. I'm a win this.

Another IC success story

http://scaseyquilts.wordpress.com/2013/02/09/its-a-miracle-success-at-last/

A "pain pump" installed in the bladder. IT WORKED. 

And her sad and painful history before the pump was installed: http://scaseyquilts.wordpress.com/about/

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.