Ok, I know that I am usually an eternal optimist and have sort of touched on this subject before but I need, at this time of post op stress and the begining of another complication, to know...where do you find your joy?
I am broke, unemployed since all of this surgery and can no longer reach down to tie my shoelaces....scared that meat is very soon going to become a luxury item in my life and the dollar store (we have a €uro store here!)is where my Grand son's birthday present is going to be bought...
So, before my mainline incision splits open...where is the joy?
Sharon

Oh, man. At least many kids like stuff from the Euro store! (It's "Action" here.)

I need my garden. My mood is instantly lifted just from sitting in it! Need flowers, good thing they are so cheap here.

Rely on my faith a lot; rely on good friends. Often feel lonely and removed, living over here, but know they love me and are praying. Read a lot.

I pray a lot. I complain, ask, say thanks. I try to count my blessings every day, even though some days I force myself to do it through the complaining and the tears. Funny thing is, I always feel better after doing that and saying thank you...

Hang in there; so sorry.

Gin

I sometimes find my self asking when will I feel happy again? Then I look back to my worse days of UC and see that I was asking that question then and would have given anything to be where I am now. I guess for some of us happyness is in the moment and joy is knowing that it will get better......the sun always rises

ooh Sharon, I feel your pain. I just came out of an office procedure that cost 2200 not covered by insurance because I chose to go to a non-par surgeon due to his expertise with jpouches. I too have been out of a lucrative career for several years due to my illness. After having these surgeries my expectation was to feel better, but truthfully most days I feel much worse.

I guess somehow we have to find the strength to move on and fight as that is what we have been doing for most of our lives with chronic illness. I cannot help but envy those who are able to get up without pain and and function without thinking about their bodily functions and how they work against them every day.

Stay strong and hopefully you will heal better than you anticipate and you will get past this difficult period even though I know it will seem like a lifetime before you get there. The best of friends always help in the worst of situations I have found. God Bless.

My joy is found in music. Simply put that's what gets me through the rough times, along with support from friends and family.

Your answers are all so healing....I am presently beating the crap out of bread dough...that is as close as I can get to forgetful/happy...I think of nothing when I am kneading bread...I love the silky feeling.
I spoke to the surgeon about the scar and the fact that he cut right through my old stoma scar and did not even bother to remove the scar tissue or clean up the edges(as discussed)...I now have a brand new 8inch horizontal scar on top of the fact that he didn't remove any of the old ones!!!! I am pissed.
His answer as to WHY he didn't do what was arranged? We can always go back and do it later!!!!! ARGH!
Why oh, why do they think that life is just a ferris wheel of surgery after surgery without end....
I want my joy back!
Sharon
ps. My bread, like my mood, went flat....they looked like snakes that got caught in cross traffic....squash! I had to start all over again...second batch came out fine.

This message has been edited. Last edited by: skn69,

Hi Sharon,

There is nothing worse than feeling you have no joy. I have been there, sometimes still visit, and fight with it everyday that I awake to feel pain, etc. There are alot of days that I have to FORCE myself to feel joy.

You are dealing with alot of disappointment (SHAME on your surgeon!!!) and trepidation as to what tomorrow will bring. I am so sorry that this time is upon you now. I guess the joy comes from the hope that tomorrow may be better? Knowing that you have friends and a hubby (I know your family is not exactly helpful for you from reading your posts) who love you can bring comfort, which in tough times may have to be a substitute for joy? In my many years in this battle, joy has often eluded me, but then there are times where I feel it is most powerful because there are people that truly love me and have gone down this road with me (albeit as passengers, not the driver) and have borne witness to the ugliness of this disease and have not looked away from me.

I wish you some answers, which may bring peace... which I hope will lead you back to joy.

It's cliche, but I find my joy in my family. My husband, my sister, and my parents. I am never happier or more relaxed than when we all get together for dinner and just eat and laugh. I never worry about how I look or what I say. It's life at it's best.

Sure, there is little joy in thinking about how little you have to spend on your grandson's gift - but think of how much joy there is just in having him!

Sharon - i feel your pain. While my GI situation is stable i am still dealing with the possibility of needing vascular brain surgery. Additionally my dad has parkinsons with louie body demensia and has not been well. My Alex still has the inflammation in his esophagus and we can't figure it out. Sometimes it is hard to find the good, but here are the things I focus on:

The extra hour of sleep we get when we roll the clocks back in a few weeks, the bright clear skies of fall in new England, the soaking drenching rain of earlier today, the laughter of my kids, the shrieks of the neighborhood kids riding bikes....

The peace of a hot bath, a good book, a favorite movie (Twilight series for me right now!) a favorite TV show (Friends - on 12 hours a day here sometimes thanks to DVDs)...

My favorite tee shirt, clean cool sheets that have yet to be slept in, what Meghan calls my "snuggly dress" - a soft jersey knit that feels like jammies, pictures and videos of my family on the computer...

Hi Sharon,
I find my joy in knowing that my life will continue beyond my experience with this body. I believe in God, and that he has eternal plans for all of us, as long as we believe and trust in him. Take things one day at a time, knowing that your struggles will one day be over. Focus on eternal happiness.

Ok, a little joy....I took the 'handibus' last night to go to my step-daughter's for dinner...the 'special' bus ...it is a door-to-door serive for handicapped people and only costs 2 Metro tickets (subway)...so nice to be able to leave my house again.
On the less joyous side...it is so disconserting to see how easily the children go back to 'don't touch Sharon's tummy' mode...I got 'air Hugs' and they kept a physical distance from me...no crawling into my lap or rushing into my arms...we don't think about it but they get damaged from all of this surgery too.
At least I got to tell them a story that had them rolling on the floor with tears in their eyes...if my tummy is 'broken' at least my story telling abilities aren't!
Sharon

The "We can always come back later." reminds me of my dermatologist who does one simple procedure and has me schedule a subsequent appointment for the other things I want removed. Hmmmmm! $$$$$$$$!

I'm trying to find more joy but have decided I need to deal with, as someone above said, one day at a time. I've been living off of the joy of my son's wedding a month ago. I got to see my daughter and my grandsons and we were all together. I love my new daughter and am glad I'm still here. When I look back to a year ago I was one sick puppy, so glad I don't have to do that year over!

Sharon, I thought he was to fix everything, did he just fix the 2 lbs of scarring hindering your K-pouch? Bad doctor.

Sharon just remember that there are other`s who are far more worse off than you.So I just think you have to take things in perspective.I`ll give you an example.I have been on high doses of a pain med which I am addicted to now.They say I am dependent on it but I call it addiction.Don`t get me wrong I don`t go buy it off the street or abuse it but my life right now concists of me taking my dose lets say at midnight and then looking forward to when I can take it again that`s it,I do nothing else except sleep on the couch get fatter by the day so I know where coming from about not being able to tie your shoes anymore.Its taking a toll on my family, thank God for my wife and 2 boys and 2 girls who have stuck by me thru thick and thin.So you see I`m screwed in one way but blessed in another.My joy comes from me knowing that no matter how bad things get there are always 5 people who watch my back.I pray that things will get better for you.God bless and take care.

Copperhead,
I know that there are many (oh, so many) people worse off than me (I was often one of them!!!)...so I am not lamenting lamely....I am far from a coward, am usually rather dynamic, optimistic, energetic and stubborn...but this spiral of sick, surgery, complication, convalesence, sick... this forever (its been 10yrs! & 14surgeries...not to mention the money!!!)circle is killing me, my carreer (dead and burried obviously!), my marriage (I was a newlywed when all of this started)and all of my relationships...I have gone from a dynamic, independant businesswoman with a super apt in the heart of Paris to a sick, broke and lonely housewife in the bad suburbs who no longer buys meat...not good.
Hubby is retired but forced to continue working because of me and resents me for it greatly...and I cannot find a job anymore because I can't get there from here! My medical bills ate all of my savings and I do not have the type of marriage/family that you have....I cannot call them supportive and understanding...they are barely tollerant.
I do not take pain meds out of fear of what you are going through, or any meds for the same reason...I tough it out and grin and bare it...so, yes, I am desperately searching for the joy...and need a bit of help here.
Sharon