Sunday, June 23, 2013

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." 

Friday, May 31, 2013

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:




Sunday, May 19, 2013

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.

Saturday, May 18, 2013

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.

Tuesday, April 23, 2013

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.

Thursday, April 18, 2013

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/

Monday, April 15, 2013

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.