Living with hepatis c

Every few months my disease gives me a new challenge. In May I was able to eat many things that since then I've had to entirely give up. I kept getting so ill with Ascites. Before I could truly get hold of how Ascites worked I went almost all the way down. I was not able to feel my trunk when I hoop danced. I learned that because I could not feel my trunk, it could not give out strong enough responses to my arms and legs to make them perform as I was used to. It was difficult to jump and spin or to get any kind of a lift off. The limitation was shocking. I was holding 16 pounds of fluid. I was not able to drive my car. I could not sit up and I could not walk about for more than a few minutes. I spent an entire month in bed almost entirely. Now and then a friend would show up and I would manage to get myself off to the shore with him or her. I was at once filled with gratitude for the forces that combined to make it possible for someone to show up in my life and spend some time with me and to help me get to the shore and hoop dance as well as swim but along side of the gratitude sat the almost remorseful feeling of the situation I seemed to be trapped inside of. I hated looking 4 months pregnant. For the first time in my life since I was young, I look like I enjoy looking and therefore I also I also feel fantastic because it takes a lot discipline to get here and be here. I'm about to turn 61 and I feel so young. If only I did not have wrinkles on my high cheek bones then all would be jammin'...I'm ill but I am not lazy. I keep pushing myself because I am so curious as to what I can next draw out of myself.

I am up again after a couple of months down and one entire month nearly in dire straights. I've given up all drinks except for lemon and water, water and I drink a lot of carrot juice everyday. Now and then I have a cup of green tea but I drink it for hours and weaken it very much with water and ice. I can only eat sprouted wheat. I am able to eat no other wheat at all, no pasta and no bread that is not made from sprouts. Fortunately I can still eat Walnuts. I am fine eating a quart of yogurt a day. I can eat lentils and I love lentils. I am able to tolerate most vegetables and fruits except I must be careful with greens because they have so much iron content. The one treat I am able to have is Frozen Yogurt and Haagendaez makes one that has a very low sodium content. I try to keep the sodium down to under 700 grams a day, some days it is far far less but it is rarely more and for now the carrot juice that I buy freshly made at the health food store in Haleiwa is moving everything I eat through my body. It and the oatmeal that I eat do the job that bile used to perform as well as albumin. The oatmeal must be cooked an entire hour to make it possible for me to digest it easily. I've learned to eat it cold and make it into a mold like jello and think of it as Japanese Mochi. It works for me, I love it like that but it was an adjustment just as the entire diet has been and everyday I am grateful I found how to eat so I do incite the Ascites but also aware of feeling that there are obstacles around me, walls and barriers that I can get around. Its just a feeling, it passes. Its normal. I am sure.

The reality is that I live like a queen. I am in peace and quiet on the north shore of the Pacific Ocean. There is more water around me than any other place on the planet. I can swim and be in the sun. My liver responds to swimming and cycling as well as a heck of a lot of hoop dancing on the shore and all of it happens in the sun. I appear to be super healthy. I even look like a jock but my liver is no jock but it is one hell of a contender. I applaud it for that. I reeled myself in and recovered from the worst most edgy experience of Ascites yet. I was not sure I could do it and everyday I fight to keep from having to return to full blown Ascites. Now I only have a small pouch of fluid in my liver about the size of my fist, sometimes it is twice that size at night and sometimes there is a larger pouch near my spleen but not in my spleen but with morning they shrink and smooth out. At night sometimes I can see their shapes lying on each side of my abdomen. I am very intimate with my illness and my body. I can focus on it. I am loaded with feeling. I am loaded with emotions. I am full of life and never stop seeing the shadow of this disease over my shoulder. It has caused me to fall deeply in love with myself and live and to put it all in the proper perspective while I still have time to. Now that is a stroke of luck but we make our own luck, life does not hand it to us.

I've never known the person I have become. I can see in myself all the people that I've been but now I have on my hands an entirely new self and it is constantly surprising me. I am able to get thru some tough places alone in life and with only a little help emotionally from my friends. I'd like to be closer to some people and I'd like some new people in my life but you can't nudge someone closer to you and life has its own time, it just does not give us what we need when we need it every time, sometimes we have to think and reason our way into new territory. I'm patient. I can do that but don't expect for me to bullshit you about the meaning of patience. I will promise you though it increases endurance as well as performance.

Now back to my life of bird coo and breaking surf.
Aloha

Isolation

I never know what I am going to feel like. I have periods where I am almost super human, strong as an ox and optimistic as a rainbow. I bounce. The sun is the one thing that can hold me steady. When the island is warm enough to swim, I am even more steady. Even the slightest over cast to my day can throw me into the deepest confusion. No one talks about the confusion related to End Stage Liver Disease caused by the Hepatitis C Virus. It is documented in medical journals but no one seems to realize what it feels like. Mostly the depression that comes with the de-compensation of the liver is over looked, it becomes more of a personal judgment that is concluded. I'm alone a lot. My disease causes me to live a limited life. I can't eat the same foods any one I know can eat. I'm not able to eat out in restaurants. I can only eat a few things or I will become so ill I am not able to function at all until I quit eating and wait for the wrong things that I ate to pass through my body so healing can occur from their damage to my body. I can't eat ice cream. I cannot eat animal fat other than organic chicken. If I eat ice cream or anything of a fat content then I throw up and eliminate at the same time. My body goes into extreme rejection of the substances. Holidays everyone is together and eating wonderful foods and I can't join in, if I join in to even the smallest measure then the spasms begin within a few hours and it takes days for my system to adjust. My gut will swell so tightly that I heave to breathe. If I take Tylenol to get the inflammation under control then my nose bleeds. I have a low platelet count in my spleen and it causes my blood to be slow to clot and it causes me to bleed easily. I bleed internally to some small measure. Tylenol is the only medicine that I can even tolerate for pain but I rarely take it because the nose bleeds do not go away as soon as I quit taking the Tylenol, the effects of the Tylenol cause my nose to bleed for days even if I have only taken a small amount of it for 3 days.

I'm hungry for everything. I'm thankful I can eat oatmeal, yogurt, organic chicken, plain pasta, olive oil, fruits and a few vegetables but there are many that my digestive system will not tolerate. This is serious intolerance. I go into spasms every time I ingest anything except the most simple foods. I can eat a small amount of nuts. I'm extremely happy about this. I can eat small amounts of dried fruits, YUMMY. I can have a bite of chocolate now and then but not often. I'm able to tolerate a small amount of salt. I make my own bread so I can count the sodium. I save my sodium for bread, there is a bit of sodium in yogurt. My liver does have a small bag of fluid that stays full at the base of it so it is best to not eat any salt at all. I can eat sugar still but it is best to eat very little of it. Still, I'd lose my mind with no choices. I am doing all of this so I don't have to take medicine to throw off the salt and fluids. I exercise 7 to 14 hours a week extremely hard and I cook all of my own food to stay away from those medications, they clearly make the condition harder faster even if you can eat the foods you want to. So, a birthday party, me a guest, "no thanks to the cake" people soon learn to ignore you and let you disappear. I say this because it is a reality. I do feel badly for myself no doubt. I'd like to be with people but word gets out, signs show, only a little time passes before people know I won't be able to keep up with them. I am very busy keeping up with myself. I am the only one that can keep myself strong and functioning. If I am having a day like today when thinking is very difficult then I have to close up around myself and be alone with my confusion. I have to find things to do to pass time and feel like I've managed to be productive in some way today.

I've never known anyone who lives as alone as I do. I do not have anyone to call me on the phone every day. Days pass and I see no one or speak to no one. I'm everywhere alone. I am on the shore alone. After awhile the disease seems to have become part of my nature. Its something I share with myself. I've learned to hold back so avoid the moment when people realize I am not strong enough to keep up with them or to engage in life activities the way they are able to. I need more silence than anyone else I know. I believe the Ribivarin Inter-feron treatment for a year to kill my virus as well as the progress of the de-compensation of my liver have formed an entirely new life for me to manage and its one that I am only able to understand with great effort and will so how can I imagine that anyone else could possibly realize why and how I am now living. I cringe when I think of the moment that always comes when I have to begin to explain any of my limitations of fatigue, needing to exercise so extremely much or that I am not able to join them for a meal anywhere.

     Okay I am over it, I don't mind talking about my diet any longer. I just spell it out, "I know what I can eat, no need to suggest a thing." I've turned hard core. I do it to remain fluid and flowing. I won't touch a thing that is not working for me now. Every day its the same, oatmeal, lentils. sprouted bread, organic chicken, carrot juice organic freshly juice, beet juice organic freshly juiced, fruits and vegetables some walnuts and I can eat frozen yogurt but it must be a low sodium one and I can't eat as much as I'd like because I have to be diligent about sugar and no matter how I try, I still eat too much sugar but it is the one thing that cools my liver off, the fire burning in my body and radiating through my being. I am on fire, I am burning up, the virus is eating my liver as I think, spin, write, cook, it never leaves me alone and it never will now as I have been to Queen's Hospital and seen my new doctor and its too late for any more treatments but it has long been I am sure.  A treatment to kill the virus now would only end up killing me too, my liver can't endure it and in 2004 it then could barely endure it, I was not able to walk without a cane after I began that treatment for 3 full years. I could not get out of bed, push myself out of bed without it. Now I am sure if I need to I could beat someone with that cane. I could protect myself with it but instead I turned into a benevolent Hoop Dancer. My spirit is being disciplined, my mind is being forced into submission to its anger and range and is being slowly replaced with peace and acceptance but its not easy work, there is a bounce in feelings about my disease, there is a sinking at times into fear and then comes the rebound when I am able to rise out of that repression and anger to hoop dance again.

So far I've managed to keep the fluid off my organs and out of my abdomen since my last horrible round with Ascites. But the fatigue is daunting even without the 16 pounds of fluid that can suddenly build, some people gain 60 pounds of fluid so I am always in a state of weighing fear against gratitude when I am hit the hardest but its so hard to keep a positive attitude and pull myself out of the throws of depression that this disease saddles me with. How I wish I did not have this virus so that I could see what I am like in life, I am sure I would be super powerful and successful now that I am living as I live if only I did not have this damn virus eating my liver, giving birth to stronger loads of it and all the time its numbers mount, I think I have 6 million or 6 billion of the Hep C virus and that was measured 3 years ago. Soon I will have a new count that Queens Hospital has from the blood work they did. I so wish it would just disappear and I could live but it looks like it won't and that I can count on being flat and sick the rest of my life and trying every time I go down to pull myself back up again.

If I was well I'd join a cycle team. I would travel around the world somehow. I would buy myself a sewing machine, I'd probably do dark room work again with my photography but as it is it feels like I am dying and that I might as well let go and do a few things well and just rest the rest of my life doing these simple things, hard hoop dancing, beautiful smooth hoop dancing, cycling, water color and writing as well as lots of swimming. Pushing much always lands me in bed trying to recover but it is shocking how hard I can still push and how powerful I am the days I am pushing but I can feel with every few months more loss of stamina and endurance. Where is this headed and how will I ride it? I love life. I want to remain a part of its vital force and take on the planet and life.