I looked in my throat with a flashlight to see what was going on and saw a 1" gouge on the left side. I couldn't see the real painful part that was located lower in my esophagus. The first couple mornings after the endoscopy I woke up with bloody drool on my pillow. When I see the doctor I'm going to ask him what could have caused this. I can't afford to lose more fluids than the chronically dehydrated state my body is in nor can I afford not to eat like that for a few days.
The night sweats have started back again.
Thursday night I developed some sort of stomach bug which left me feeling ill all day Friday as well. Needless to say the past few days have been difficult physically.
Today its been difficult being upright. I get up from the bed to go to the bathroom and within two steps I'm so fatigued I just want to lay back down or pass out. It's probably the worst I've felt since getting ill. I think the weight loss and everything have caught up with me and my body has just shut down.
I've increased my Cortef as well as started drinking Gatorade. I'm very grateful I'm able to drink fluids again without pain
I've been spending my days in bed listening to Stephen Levine's "Soft Belly Meditation" and trying to read his book "Healing Into Life and Death." I've read most of his books. He and his wife did a lot of work in the field of death and dying. I'm finding his book to be comforting and appropriate.
I don't know what's ahead for me physically. I don't know if I'll have more improvement or not. But I can work on healing my heart and soul.
I was listening to the meditation on my ipod and Stephen Levine said "it's okay to trust the process" which led to a bout of painful tears (painful because when I cry or burp it hurts my throat). I cried because I became aware of how much damage this illness has done to my heart and soul. I'm turning into someone I don't like. I've become angry and more times than I care to admit have been filled with self pity. Granted it is hard to live like this and it is difficult to deal with the level of abandonment that has occurred, not to mention the medical neglect, the stigma of not being believed or being told the gastritis is a muscle strain, and on and on....the isolation and sense of deprivation have taken its toll on me but its up to me to heal my heart and live from that place. I don't want my disease to be my life story.
[As an aside people who aren't ill might wonder why I spend so much time talking about my disease. It's very simple. It's because its overwhelming.]
Levine (1989) writes: "Illness causes us to confront our most assiduous doubts about the nature of the universe and the existence of God. It tears us open. It teaches us to keep our hearts open in Hell." (p. 30)
I have often said that these past few years have felt like living in purgatory or Hell or like an extended version of the movie Groundhog Day. I'm going to change that regardless of my physical abilities. It's going to take work. If I have to listen to mediations and affirmations 8 hours a day by God I'm going to change my internal state. I cannot and will not live like this anymore.
It's time for me to stop fighting and surrender into a peaceful acceptance. Since getting ill I've relentlessly research and pursued every treatment I could get my hands on (although I haven't done chelation or neural therapy or dealt with my amalgrams but I'm out of money so none of the above is an option)
My body seems to live in a precarious balance that is easily tipped into being bedbound by simple procedures such as partial toenail removal or an endoscopy and when that happens my emotions follow suit. I end up feeling frightened, hopeless, and discouraged. So I will pin my hopes now on shifting my state of mind, heart and soul.
I want to trust in the process again. I want to make peace with death not because I feel like its my time or anything like that but because when I develop symptoms I don't understand I get scared. This latest scare with my stomach was too much. It wasn't the pain so much because I have a high pain tolerance but its been the weight loss that has freaked me out and the fact that my symptoms matched so closely with my mom's months before her death. At one point I looked on the counter and saw the Pepto Bismol, and Mylanta sitting there and flashed back to my mom's counter which had the same things. When I first got sick in 2007 I asked my dad what my mom's symptoms were and he said "she had a lot of nausea." She also burped a lot which we naively joked about at the time.
What I realize is I don't want to live the rest of my life in fear. I don't want to be hounded by the "what if's."
I'll end with this passage again from Levine (p. 36) who articulates some of what I've been trying to say in this post:
Loretta told us of a two-year battle with cancer she had waged. "I fought it so hard to stay alive, but then they told me I was going to die. I was so exhausted I just didn't know what to do.I could feel death coming,so I began reading your book "Who Dies?" and started to say goodbye to all my loves and friends. But as I started to say goodbye to life, I was kind of shocked at how little I had ever lived. And even though it had seemed to me I was trying to stay alive before, it was only when I saw how much I had put on hold that I was pulled back into my life." She said that as death approached she at last saw the value of getting on with her life. She spoke of how she had been so busy trying to get well physically that she had never paid attention to the places in her that had always been so distressed, so unhappy,and perhaps forever ill (emphasis mine). She felt very fortunate that death acted as a mirror in which she saw, "really saw" how precious life was....I was so busy trying to get better that I never really acknowledged how bad off I was. I have never really treated myself with much kindness. I was angry at my body for punishing me, for betraying me. I was angry and frightened most of the time. But then something as you might say "Let go and let the healing in."...."What a miracle to send forgiveness and love into that which we have so often met with fear and loathing. To meet our pain and illness with loving kindness instead of hatred and anger brings a new trust in life. It allows the confusion that often constellates about the discomfort to release its suffocating grasp. It offers an alternative to suffering.
And now with my stomach in bad pain and sweating from the exertion it has taken to write this post I will end here.
Much peace and better health to all-