Saturday, February 6, 2010

A Step at at Time....

The endoscopy procedure left my throat feeling so sore that I wasn't able to eat solid foods until today. Tuesday and Wednesday it was even difficult to swallow fluids so each time I had to drink anything I had to first numb my throat by sucking on throat lozenges.

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-


Toni said...

Hi Terri,

I'm so sorry that the procedure didn't go as easily as I thought it would. It sounds like the tubing scraped your esophagus. It's probably one of the risks we sign off on with those consent forms. I wonder how often it happens. At least it's clearing up. It must have been scary to wake up with blood on your pillow. Wow.

I mainly wanted to say that I think you're in good hands with Stephen Levine. I, too, find his writings to be helpful. You know I'm having this book published on living with chronic illness. Well, he's one of the people I looked to for inspiration in writing it. In fact, I start one of the chapters with a quotation from his book "One Year To Live." Here's the quotation: "When the heart at last acknowledges how much pain there is in the mind, it turns like a mother toward a frightened child."

When I read what you just wrote, I felt that this is exactly what you are trying to do when you talk about treating yourself with loving-kindness. I really think you're on the right track, Terri. I admire your courage so much.

Jo said...

I haven't much energy left in the tank to say much. Just that I was touched by your post and it put me in mind of what Renee was saying about the difference between resignation and acceptance. It's such a hard distinction to make at the best of times. Yeah, I worry about losing my 'self' to this illness too. Take care.

Pris said...

I think that scraping is unusual, but I'm sorry it had to happen with your procedure, Terri. I think we swing between acceptance and despair. I swing more into acceptance now than I did in the beginning. It IS a process. So true. We follow the flow of what life brings us and, without the constant struggle to be the 'old us', our emotions ease.

Renee said...

So sorry you have had to go through your throat being scrapped by the procedure! Good grief! Hope and pray it heals glad you can drink liquids now. Sorry you are losing weight still...wish I could give you some of mine....seems to be a lack of balance in many areas of our body when our health is not up to par.
I wanted to tell you how much this post has touched me. What you said about not knowing if you will improve or not .....but you can work on healing your heart and soul.... that is where I find myself right now. Your comments here echo some of my own thoughts and much damage our illnesses have done to our heart and soul...and to the heart and souls of those who love us! So often I have said lately, I don't want to live a life of fear anymore...I find I do the same thing as you mentioned..worry about new symptoms and new secondary health issues that keep coming up. I do like what Max Lucado says about fear~ "When fear knocks on your door, do not invite it to dinner and for heavens sake, don't offer it a bed to sleep in!" ....
You have given me hope today and encouragement and great "food for thought".
Thank you.
You are in my prayers.

Renee said...

Hi Terri
I just re-read your post for the
3rd time and caught what you said about this being the worst you have felt since getting ill. I am so sorry to hear that. I have heard often that a surgery can induce relapses in CFS/ME and Lyme...any trauma can...I hope that this lasts a very short time, and you are able to see a steady improvement...

Dominique said...

Terri, I agree with Jo in that there is a process of letting go and learning how to live with this illness we have all unwittingly found ourselves on.

I think you are facing this with everything you've got. You can't go wrong with that kind of tenacity.

I so hope you start to feel better soon. I know that day after day of feeling like hell is daunting and weary-ing.

My prayers and thoughts are being sent your way, right now and for the rest of the day.

Thank you for sharing your day with me. It lets me know that I need to keep you close to my heart and when you come to mind, to say a quick prayer!

Sue Jackson said...

Terri -

Sorry to hear you're suffering so much after your endoscopy. I've never had one, but any medical procedure can take its toll when you have CFS. I also think you're right about all the recent stress contributing to this crash. I'm sure you've been very worried, especially given your family history, and that the doctor's conclusion that it's not likely malignant was probably an enormous relief (which is its own kind of stress, even though it's good news).

Your renewed vows to heal your heart and soul are inspiring, Terri. You're right in that it's one thing we DO have control over, in spite of the lack of control over our physical symptoms, and I admire you for your strength and determination.

I've never read Stephen Levine, but some of what you wrote reminded me of a favorite book of mine, The Anatomy of Hope by Dr. Jerome Groopman. I'm glad you've found a source of inspiration.

In addition, remember that you have all of us - your online friends who completely understand your struggles and challenges and who are here to support you, even if we can't come over to physically help you!


dominique said...


Jennie said...

HI there, I came across your blog, I am a mom of a child with autism/immune dysfunction and our doctor believes she actually has CFIDS, but because of her age it manifests as autism...anyway, I was wondering if you may be reacting to the additives to the drugs? My daughter at one time did great on Valtrex, it brought her into our world but after a few months she developed a chemical sensitivity to it. Maybe that is a possibililty for you? Chemical sensitivity will show up right away after taking a drug and its different from die off. We have to treat our daughter for her food and chemical sensitivities using provocation/neutralization. It shuts down the immune system overreaction to foods, chemicals, mold, etc. It works as symptom control but I actually believe she has XMRV and until we can treat that we have to control her symptoms for now. I am so sorry for all that you go through. I hope and pray you get relief and answers soon!

Shelley said...

Terri, I am holding you in the Light.

Here is a (belated) Valentine that I hope might bring you some joy:


Barbara said...

Terri,I am now in the seventh year of this illness and have been through the gamut of emotions from rage to realising that maybe I will never recover.I have been seriously ill with cfs and on my own jouney made a peace with death.Rather than fearing my own end I view death as the just and good warden who will end suffering if recovery does not come in this life. We are IMMORTAL beings having human experiences
The trial you are under will end one day.

Lee Lee said...
This comment has been removed by the author.
Barbara said...

Terri Godwilling your general condition may well improve with time
and many of the more toxic symptoms can burn themselves out so that the illness becomes more manageable in the long term.Healing can be laboriously slow almost like one grain of sand coming through an hour glass at a time speeding up as your immune system gets stronger but it is cumulative so as Tolstoy remarked patience and time are your allies now.If perchance it might help any poor wretch trying to make their way through the underworld of this illness on my worse days I remember what old Winston Churchill
told his charges during the war IF YOU ARE GOING THROUGH HELL KEEP GOING.

Lee Lee said...

I have had a similar experience.
I had persistant pain upper right abdomen area. Blood tests showed I had pancreatitis so i had an endoscopy. The endoscopy confirmed inflamed pancreas but the Dr's had no idea why this was occurring and they basically just sent me home and hoe it would go away. Needless to say it didn't go away. I found another gastrointerologist who got me to do breathe hydrogen tests and that is where the answers came from!!
I was suffering from malabsorbsion. My pancreas was not producing the digestive enzymes that is should and it triggered a whole heap of issues - pancreatitis, lots of pain, bacterial overgrowth etc etc. All of this made my CFS symptoms go crazy and I just felt like I was going to die. I have now started meds and the pain is going and the CFS symptoms are starting to ease a little .... Isn't life grand!!!

Pris said...

I'm concerned. We've not seen you.

ChrisMooney78 said...

Fucking hell! My heart breaks for you. As someone who was very recently diagnosed with ME/CFS, this scares the hell out of me because the reality of the diagnosis is starting to hit home as I realise exactly what it could mean.