My Beautiful Rage-My Battle with Crohn’s Disease

In the midst of Crohn’s Disease my body literally was in pieces. It was as if I had swallowed a nuclear bomb and my insides were blown apart. At times I was sure I was being punished for something I must have done in a past life. The pain, the searing pain was payback. My thoughts were morbid. I would try to distract myself by counting the tiles on the bathroom floor, or sing as I sat hunched over the toilet but the pain like a knife kept cutting deeper…

When I was in the hospital I was wheeled down the hall into an elevator that took me down to where procedures were done. The day before they gave me a liquid to drink that tasted like nail polish remover and acted like liquid plumber. I was doubled over all day and night running to the bathroom. When they came early to collect me, I was spent.  The lights were bright, humming out electrical wattage. I was cold, clammy, and scared. What next, what now. I was put on a gurney and wheeled into a space with a tv mounted on the wall, 3 “doctors” “the best” were there as a courtesy to Marvin, my father. They looked at my beautiful face, now pale and bluish like hurried businessmen. I made jokes through my tears, I turn into a stand-up comic when sadness and terror set in, I really had them laughing. They took my arm and tried to find a place to insert the needle since my vein had been stuck so many times it was drained and hard to get into. Once they got it in they sent the Demerol flowing. They turned me over to my side and spread my butt cheeks again, then with a-lot of poking got inside of me where the camera attached to a tube, or scope, proceeded up my intestines while they all talked about the news and looked at the tv screen where through my blurred vision I saw my insides go by. I mustered up a few more jokes…”Oh hey, look at me! I’m on TV! Hi mom” my voice slow and dry, they all laughed, my heavy eyes would open and shut until they were done. They left me there on the gurney with out a word. Just a tap on the shoulder. Still on my side in a lump my eyes stared straight ahead then filled with tears.  I felt like I was abducted aboard an alien ship where there was no love, no warmth, just cold prodding, slicing, and sticking, while their beady eyes looked at my insides, and how I bled. It didn’t seem they were interested in learning from me at all, just procedure. Just hanging out shoving a camera up my ass for nothing but their own voyeuristic enjoyment. I was never told what to do, what to eat, or how to deal with it on any level. They never asked me a thing and I never learned a thing nor gained an ounce of wisdom from them and they never learned anything from me. My head pounded, my stomach hurt. This is how I lived my days, I am a slab a meat. I am nothing, I am cold and hurting and I want a life away from this even if it’s the afterlife.

Yet I still kept waiting for something, someone, outside myself to step in and save me. The next day the nurse came in and removed the IV from my arm where the steroids had been flowing for 10 days. Its removal felt like someone had pulled the plug and the light went out. “Ok you must be happy you’re leaving today!” she said. My head was pounding so hard I couldn’t speak or move. My face had ballooned up and my features were gone. My knees swelled to the size of large grapefruits and I could not bend them, all side effects of steroids. I was done. How am I going to leave? I can’t walk. Nobody was there to receive me. My thousand pound body was too much for me and for everyone. I hoped lightness would come soon. The gravity thing was not working for me.  After years of emotional and physical trauma, drug abuse from 23 prescription drugs a day, intestinal ulcers and severe blood loss, IVs of steroids, osteoporosis, and too many side effects to list, my body and immune system were shot. There was nothing left the “doctors” could do for me but I knew the reality, I was not important enough to those around me to look beyond sticking more needles in me and more pills down my throat. I was an annoyance. They had exhausted their limited knowledge on pills and pilling me to death was not working, I was proving to be bad for business. What’s wrong now and please go away was the type of vibe they gave off. And I was ready to die. They’d convinced me it was time for me to go. It seemed like heads nodding with closed eyes all around me ushering me off to leave was a reality I had known all my life, kind of a sick fucking realization and why was my body so stubborn as to hang on? Life in its infinite forms knows and is programmed to experience itself and to survive. Tears fell from my eyes as I sat on the bed bent over by the weight of my head. The room was empty and the bed was made ready to receive the next body. Please help me I thought. 

I arrived back at my parent’s house in my childhood bed and after a day or two I became calm and ready in full surrenderence of my life. Goodbye. I am ready to go. Goodbye people, goodbye beautiful earth, thank you for all the animals and trees and sunsets I’ve seen. I am at peace. I feel it coming like slowly peeling a sticker off its sheet. Goodbye. I’m almost there. I hear my father, come in and lie down next to me putting his arm around me, “You were such a good kid,” he says ushering me off to the unknown as he weeps then falls asleep. I’m shaking. I’m shaking violently all over as if I had Parkinson’s. My bones are fracturing in my vertebrae, ribs, and knees, from osteoporosis a side effect of years of steroids. Goodbye. I am still, peaceful and ready. Goodbye. Peel me off and let me be light. I worked so hard to get here, my passive aggressive form of suicide, the victim. Can’t wait to be light again. Here it comes I’m leaving… I’m floating…. off to a white place… a bright white light surrounds me I’m in an icy snowy place. I look back for a moment and see my father as and I keep floating away. I walk towards a Native American Chief in full regalia. I stand before him. “I know why you’ve come,” he said. “But before you pass on from here I will put a call out to the spirit world to see if there is anything out there willing to give its soul in order for you to live” “No please don’t! I am ready to go! I’ve said goodbye please don’t do this! I don’t want anything to die for me, I want to go!” He was chanting and holding his arms stretched out as he shook beaded strands intranced not listening to me. He looked out to the sea just there to my right. “There has been a response, a dolphin has offered its spirit to you, its on its way.” “No please I don’t want the dolphin to die please no! I want to go!” The dolphin swam up to shore and it was placed into a grave made of ice. I cried. The shaman made it clear that it is not my time and I was being sent back and anytime I was to try to leave, a being would give its soul and spirit for me to remain.  There is something I have to do here.

I am a teacher. I have to use this pain for good. Yeah yeah yeah. Fuck! I’m still here. Now what? I open my eyes. I was 24 with no roadmap and no clue. 

“Please help me,” was my mantra Id say to myself – only to realize over the that I would be the one and only one to learn how to help myself and it would be by trail and error.  I would try to have some sort of normal life, working as a bartender, hostess, and coat check, doing stand-up comedy, and singing in a band but this only could be accomplished by taking pain killers (up to 11 a day). Id ration out my 24 various pills a day given to me by doctors which did little if nothing but create further problems from side effects. I was in nowhere land as far as my understanding of what was happening in my body; that it was all immune related that my immune system was hyper active and misfiring. No “doctor” ever took the time to explain this. But over the years, I realized not even the doctors knew what was happening. They were all armed with the same dangerous meds and no real knowledge or understanding themselves. Having a father as a doctor was a disability since he was so insistent on me being seen by his colleges.  When I wanted my fathers attention I used to say, “My fathers a doctor and it was hard to get his attention growing up. I could just never be sick enough.” 

It was always the same I’d have severe flare-ups and I’d go on the protocol of dangerous anti inflamatories or into the hospital. In 2007 I got pyoderma gangrenosum one on the most painful skin ulcerations imaginable on my left leg. I got one then another and I was back at my parents house ready to return to the white light. I tried to set my husband up with my best friend so I could go in peace knowing he’d be loved and cared for by the best woman I knew. I was in agony and my leg had a huge gaping hole that took my ability to walk. However I didn’t float away – so with my laptop by my side I began my research. Over the years I had tried juice fasts, colonics, acupuncture, Chinese herbs, vegetarianism, Mediterranean diet, macrobiotics, and hundreds of supplements but I would eventually cave in severe flare-ups and take steroids. There must be more out there. I researched healing the skin – I found out about nutritional IVs and Vitamin C IVs and found a doctor who did them in the area. I showed my mom and off we went my husband carrying me into the car and into the doctor’s office. They looked at me and said you’ve got to get on Humira and do the IVs not sure if I’d survive the week. Ok fine – I was again carried into the car and off to Manhattan where the doctor, a gastroenterologist friend of my dads had to come out to our car parked outside his office on the Upper East Side. He got in and gave me the starter dose of 4 shots in the abdomen in the car. I was delirious with pain. I had quit pain killers years earlier since I had an addiction to them and also all pain meds set off flare ups since they are so acid and irritate the intestinal lining. During this time My husband and I had had a restaurant and decided we had to sell. I was breaking down physically and so was our relationship-although there was so much love I couldn’t be anything to anyone in my state. I had music in me songs I had written and this dream that I was going to go to LA and record an album with a pianist composer I had met 8 years earlier. Once the Humira kicked in the ulcerations stopped ulcerating and spreading.  I continued with the IVs and the humira. Back home, I would drag myself around the house on my hands and elbows to get around until I was able to go to my knees then with a chair on one foot Id hop and then finally onto two feet. Once I could stand on two feet I would tape up my wounds and go do stand-up and sing again with my band-the pain was there but I could walk!  Once the restaurant sold I began my pursuit of the man who I wanted to do my album with and off to LA I went to record it. There I met a nutritionist who would teach me about the Body Ecology diet and mushrooms like Reishi, Chaga, Coriolus, that are called immune modulators meaning they balance the immune system by going where they are needed. I was taking so many mushrooms I was like a wet log. I also began learning about ionic minerals, candida, and acid alkaline balance with foods. I was feeling well, very well, still bandaging what was left of my wounds and still injecting Humira I decided to stop the drugs again and follow this path of new supplements and balancing out the acid in my diet. I would drink coconut kefir margaritas and have mushroom tonic cappuccinos with deer antler and deer placenta for extra nourishment. I got through the 12 – 14 hour days in the studio over 3 months even flying back to NY in the middle to do a concert and back again to LA. I thought this is it! I’m done! I had had these moments before where I thought I had it in the bag and I was done with the stupid doctors. That I had it all beat and figured out but ultimately it bit me in the ass. I had moved to LA and settling in nicely except for the lumps on my face and on my back. I learned to live with it somewhat and so did my husband. A dermatologist “the best” back in NY told me I was brave to walk in public this way and recommended the birth control pill, anti-biotics and Accutane, which has a side of Crohn’s Disease! I was like “fuck you,’ no way am I doing that. So I just kept on with my life dabbling in all I had learned so far. In December of 2009 I was getting a massage in my house in LA and I got a chill, that chill turned into a cold which turned into the flu which set off my immune system and sent me into a flare which had me chained and bound to the toilet over the next few months. I lost 20 pounds, and then to my horror the Pyoderma Gangrenosym came back this time on my foot and once again I’m in inconceivable amounts of pain and in bed crippled. I went to “The best” the IBD group at Cedar Sinai who low and behold had exactly the same things to offer. Prednisone, Humira, and for the Pyoderma, Cyclosporin, which is given to transplant patients to shut down the immune system totally so the body doesn’t reject the new organ and attack it.  I was admitted to the hospital where they got the IV in and the antiinflams flowing once again. Back to high doses of steroids once back home where I also had home visiting nurses come to finish up my IVs. I was hardly able to walk my skin was covered in blisters and was I still running to the bathroom. my foot was not healing. I got depressed and once again I pondered my life and how much longer it would last. I was not better at all I was the same if not worse after seeing the “Best” and we were out thousands of dollars since no health insurance company will cover me. I kept asking, “Was I born this way? With a faulty immune system? Or is it a result of a traumatic childhood and coupled with eating disorders and incredible stress-did I bring this all on? Can I fix this?” No doctor could answer me. I didn’t leave for house for weeks at a time-terrified to get into a car and have the urgent need to goto the bathroom. If I had to go somewhere Id panic, armed with toilet paper stuffed into my bra and pockets, my eyes would intensely scan every inch of the passing streets for what I could use as a make shift bathroom. 2 garbage cans, a bush in parking lot against a wall. But there were still the times when it was just too late and I’d go in my pants. Once in front of my mother who said, “Don’t worry your beautiful and it doesn’t even smell!” as she wiped my tears away and we rolled down the windows. I still wrote my comedy sets in my head and on a few nights would get my husband to drive me to the clubs and carry me in to the comedy store and put me on the stage to do my set. I would be on crutches with 103 fever and holding onto the stool for dear life. It was hysterical. I’d do my set, kill it and get carried off. I needed to do it to feel alive to honor my spirit. Back home Id sleep crawl to the bathroom where I’d continuously loose blood and cry. These were my days yet again. There must be advancements I thought and found out they were doing stem cell treatments in Europe which was basically a bone marrow transplant very dangerous and expensive and still in the beginning stages – this did not sound at all like an advancement. I believe in the power of nature to heal and in the body’s wisdom to repair itself givin the right support nutritionally but what was the missing piece the supplement I had not yet discovered? I went back to the nutritionist and started on his protocol finally with slight improvement and settled into sickness as a way of life. My friend Congressman Dennis Kucinich called me who also has Crohn’s saying that I need to be vegan, that I was not here to suffer but to feel joy. I had the nutritionist and Body Ecology Diet coach telling me I need to eat raw meat, cultured veggies, and mushrooms, my sister telling my to take hook worms, doctors telling me it doesn’t matter what I eat, my mother telling me to take Low Dose Naltrexone, my acupuncturist telling me to eat soups and get on the Gaps diet. My heads spinning, months go by and one day I’m looking at my ulcerated foot and I realize I’m trying to treat my foot Im looking up how to treat and heal from pyoderma gangrenosum when in fact it’s not my foot it’s my immune system attacking my foot . I need to calm my immune system. This seemed profound. I do an internet search “Calming the immune system down” and what came up changed my life. I found article from doctors in Europe in Switzerland that had a protocol in place consisting of a Saccharomyces liquid drink, and other immune calming supplements and a diet plan. This plan eliminates all sugars as sugars cause candida and promote infection causing the immune system to attack itself in defense. I had been introduced to this concept in the past but didn’t fully grasp nor did I want to due to my love of chocolate but out of desperation I gave it all up and somewhat comfortably by using sugar substitutes like stevia and Erythrotol. In two weeks my life had changed so dramatically: my thoughts, my energy, my bathrooms, my faith. Never have I ever stooped researching and as time went on each new thing I learned and tried was a stepping stone although its hard not to say I wish Id known this then.  When I really got it conceptually it was the simplest thing I could’ve ever imagined. Its amazing, the information I found to heal myself was free on the internet. I felt like suing the doctors and the hospitals for ignorance. I wanted my money back I wanted the year I lost back.  As an actress, singer/songwriter and stand up comic I’ve had to press the pause button on my professional life while taking time to deal with it, learn, and heal. It has been a year of incredible suffering and once again going to that place of full surrenderence and saying goodbye but It’s amazing how resilient we are. Dealing with Crohns has stretched me in every way like mental/spiritual yoga. It has inspired me to learn. I feel grateful for every moment for every step I take. When you loose the ability to walk its amazing how focused you can get mentally with visualizations seeing things clearly that I want to manifest like healing my body and walking again. The importance of having patience and good nutrition so there’s fuel for it all to happen. It has taught me about forgiveness, letting go of the past and being in the moment, that great suffering leads to great tenderness and compassion. To use my gifts, I’ve written songs while in the hospital like “Laughter in the Distance.” Being aware and feeling so blessed for the love and support in my life. For the brave hearts that have stood by my side through the worst of it all fully understanding the challenges in it for them to see a loved one suffer is very difficult and scary. I know it would probably be easier to run and so I am always amazed by my husband’s inexhaustible loving energy.

Overcoming Crohns is different for everyone. For me it’s been about knowing when to say I need help. Its been about seeing my patterns and changing them. Letting go of all judgment, loving myself, trying different healing modalities, coming to know what works for me and being ready to be well and independent. Its been about Breath, visualizations, and music that makes me feel my aliveness and brings me back from despair. I have come to know how to breathe with all things with all life to connect to my interconnectedness with all things in nature. I am a passionate and wild heart and will continue to create and make music I hope will inspire all.