Eye on the prize

Thanks to the three of you who posted yesterday to me. It's 7:15 or so as I'm replying to you now and I had about 30 seconds after I first awakened this morning til the same old hellish morning began. Hubby gets up with me now most of the time as I jerk myself up and out of bed in tears and sadness most of the time.

It's a strange feeling to be sleeping fairly soundly and then to find yourself almost automatically jolted from that sleep to an upright and standing position just to keep from throwing up. Maybe in 3 more days it will all be over.

I find something very interesting from a psychological perspective - the all too human meed to blame something - blame yourself, someone else or something in your life for this condition (or any other condition) when you can't manage or control it yourself. I think that feeling "guilty" about it all after a prolonged period of time of not understanding what's happening to you may be more common than we think.

I have tried to be "logical" about this condition. I've tried to be "spiritual" about it. I've approached it from a medical/health perspective with well-intentioned doctors and medications and even nose, sinus and tonsil surgery and even counselors and all to naught. The condition has had a life of its own and has continued to play itself out over the last 20-some years in my life no matter what I did.

Well, I'm tired of trying to "reason" myself to to health. I'm going in for surgery on Monday morning at 6 am and saying my prayers that I'm doing the right thing. I really don't know how anything could be much worse than what I've been slowly coming to over the last 3 years. And the last 6 months have literally been hell.

On the other hand, I'm grateful there is surgery for this condition whether it works for me or not. I'm grateful to have a caring husband who so patiently looks after me and our home since I've become nearly incapacitated. I'm grateful I have any strength left at all. I don't have much because I've become very weak. I sit around in my recliner most of the time just to be able to manage the pain and to keep from throwing up. I'm scared to death of food and eating and I'm scared of being scared. It's not much of a life but I'm moving on with it.

I thank all of you once again for being there. On days when I'm completely convinced that there is nothing wrong with me, or that it is "all in my head" or that I really could do something about it if I were strong enough - those are the days when I'm so grateful to read old posts and new ones about others who have the same feelings. I'm so very grateful because it gives me a glimmer of hope that I'm not alone and that I'm more normal than I think I am.

I guess this is the morning "rant" that my husband would normally have to listen to - poor man, same thing every day. "I don't understand. Why is this happening to me. I didn't eat anything bad, I took my "medicine". I think I'm dying" and on and on and on.

I want that kind of morning to be over with. I don't mind the pain from surgery. I just want these horrible mornings to be over. I want to be able to lay my head on my pillow at night and not be traumatized at the thought of waking up sick again. I just want it over . . .

Thanks, everyone who reads this.
It just helps to know that I'm not alone.
Rita

Joy, I've looked but don't know how to find what you're referring to. That thread is the only one I have a hard time navigating through. Any hint to find your short story?

rita, try this link go down to the post with the line of dancing men.

https://www.healingwell.com/community/default.aspx?f=45&m=2135666&p=6

I nibbled at a lunch today with a cousin I hadn't seen in a while. He wanted to know more about my surgery. As I sat there and explained the surgery to him he wanted to know why "I" was going to have it.

I explained that little concept to him and that was when he said, "Well, Daddy had it too but it never stopped him from eating."

Then he looked at me with this puzzled look in his eyes as if I were duty-bound to explain to him why his daddy could "live with it" and I needed surgery.

It was then I knew it was all going right over his head. All the way over his head.

I enjoyed the lunch - all 12 bites of it - and decided maybe "explaining" isn't all it's cracked up to be.

And so it goes . . .

I feel the same way when I have to explain my newest diagnosis- Lupus. They say Loop-what? I can't seem to get them to understand the sun and even fluorescent lights make me sick. It's too much for them to process.

I ate some homemade chocolate pudding last night. about one cup. It didn't taste all that good but I know it was because I made it from scratch. I wanted a little 'last supper' dessert. I never have dessert anymore.

The chocolate kept me awake last night and I felt hot all over. I couldn't relax or get comfortable; just kept tossing and turning. It was the middle of the night before I figured out it had to be the chocolate.

Big mistake on my hyper-vigilant esophagus/stomach.
I just keep learning the hard way.

Big day today with some out of town company this morning, some friends dropping by tonight. I'm not used to too much socializing these days. It's so hard to talk about anything with much feeling or to show much interest with "normal" folks conversations.

I used to be that way. Normal, that is.
I remember it well.

Maybe again one day.
I can dream . . .

Rita

I feel like such a big baby and such a whiner. Maybe other people are whining but I don't see too many who are. Everyone seems to be in some stage of recovery or have recovered completely from their surgery.

I still think the most surreal part of everything I'm going through is that it seems like it is not real at all. To have come to this forum and found all these people with the same symptoms who are going through or have gone through the same thing is just bizarre.

I know three people personally who have had NF. They are all well and their surgeries were a while ago or many years ago. They still remember their suffering (that sounds so dramatic) and they have shared it with me but I don't talk to them - have only had a half dozen total conversations about it with them and when I hang up and get back to my abnormally normal life I feel weird again - as if I were the only one this was happening to.

I'm quite sure many/most people here are worse than I am or they were worse at some point. My symptoms have just gone on so long that they became a way of life until they started to become unbearable.

I miss breathing. I have dreaded breathing for so long because it hurts so much. I miss all of the life I had before I became acute. I guess that's the best way to put it - I became acute.

Now to start the day. Maybe it won't be over 110 degrees again today.
Oklahoma in the summer. I'll never get used to it.

Rita

Post Edited (halloweenbaby) : 7/30/2011 8:54:33 AM (GMT-6)

Dearest Rita.

Please give yourself permission to whine as much as you like or as Sandi said 'scream, shout, cry' whatever helps you to get through your day.
Even though thousands of miles separate us I still feel your pain & can share your frustrations. Know that I think of you often & wonder how you are doing or how your day is going.

Hang in there, Monday is just around the corner.
Take care

Lynda

Rita-
Good luck tomorrow. I now everything will go well. I probably won't be online after today until I get mine at home up and going again. I hit a brick wall trying to get mine fixed. They have made silly excuses not to repair it and wish for once a doctor would stop beating around the bush and just say what they really mean.

Take care,
Bill

Rita-
I too had symptoms very early, since 17 or 18. I did talk with the surgeon again a bit ago. He was willing to explain himself by talking human to me. Since the hole in my esophagus has only officially healed this week. There was still a hole until the did the last ct scan. They won't do any surgery on the esophagus unless emergency for 4 to 6 weeks. He wants me to come back then to have it repaired. He asked if the Nissen help much when it was good. I told him Oh yeah! was the best I felt in years until the tear in the esophagus anyway. Guess all this anxiety of knowing one wrong move has caused me tons of near unbearable pain, ruined a perfect nissen, and has put me in a position of dealing with more pain and another surgery has gotten me quick to jump the gun. I usually am more tolerant, but when I have been passed from hospital to hospital and doctor to doctor you can get the wrong idea easily.
I am so happy for you having your surgery tomorrow. Remember there will be bumps in the road durng recovery, but keep you eye on the horizon and things will get better. sometimes not as fast as we want, but it will happen.

The biggest thing to remember is do as Denise says, let yourself go with the recovery. your body will let you know when it's ready for the next step. Just because they have averages on this and that, everyone is unique and you follow your unique healing process. I am with you in spirit the whole way and hope to stop by from time to time .I feel as though I am being a crummy moderator since my financial situation I am without internet right now. when things get bad try to think me as a tiny little ornery devil on your shoulder reminding you to take is slowly and all will work out. The little devil thing goes back to when I was stuck at Loyola and we all picked our own smiley thing as ours. I got the little devil.

soon you will be a full paid up member of the "wrapped club" I want to welcome you now just incase I am absent for a while. I have complete faith in your choice of surgeons and am praying for a great out come. Hope today you are able to find peace knowing your journey to less pain is almost over.

Take care my new friend,
Bill

Rita-
I was having an upper scope done on feb. 28th and they tore my esophagus with the scope. I went home and started to have heartburn like symptoms and took so malox chewables. Laid down and was woken up again about 30 mins laer with the same pain, but this time it was a wider area. Did the same as before and laid down. Was woken up again about 2:30pm and my whole chest hurt and it hurt to breathe. I called my wife, who called the GI office and they said he would meet us at the ER. Did a barium swallow test and ruched me to Iowa City. Very distinct pain, not like heartburn, but way worse.
That leak and when my stomach had 2 holes it and was leaking are the only times I can say I have had a "10" on the pain scale or maybe they were a "12" not sure.
You have it pictured right, me and the laptop in my designer green gown.....breezy in the rear!

I am so anxious for you tomorrow. Hope you get to feeling better soon so, so you can post how you are doing.

Take care,
Bill

Bill,

Thanks for filling me in about your torn esophagus. I was afraid it was done during your NF. Do I understand that you've had two wraps? I get confused and can't keep people straight. If so, did the first one fail or why did you have to have a repeat? Thanks again and I am so hopeful you will be back as good as before very soon.

@Joy,

Thanks for the note. about 10 years ago with my first really huge bout with GERD my husband and I purchased a very expensive adjustable bed. It makes very little difference now if it's up or down although it helped a little for a few years. I look forward to never having to raise it again because it makes my back hurt, I end up just slipping down in the bed and all the covers slide onto the floor.

To everyone who has posted to me and encouraged me in any way, I thank you.
This is one of my favorite poems and I hope you enjoy it too.

Hope - by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all.

Carpe Diem

Post Edited (halloweenbaby) : 7/31/2011 1:30:37 PM (GMT-6)