We live as a group on a very high stress level, using our adrenalins and cortisol to the extreme...at first it's mostly healthy and a bit sick and then it becomes mostly sick and a bit healthy...And we accept it while negotiating with God...'I can live with this...if only it doesn't get any worse' or 'just let me survive this one and I won't ask for anything else'...then it becomes a permanent state of war between us and our bodies, constant battles and struggles just to survive the day, the night or the weekend without falling apart...Then finally there is the moment when we reach the last straw...the public embarassement or the private hell or the night when we can't stop soiling ourselves and just sit in the tub and let it pour out of us...we all have the moment When we finally decide to jump...And then we pray that the surgeon is skilled, the surgery goes well and the post-op is without complications...which are often the norm for most of us.
And then if we are lucky, a month, a year or 2 later we get our lives back. We don't realise the milestones at first...a movie with friends, a dinner out or a night when we sleep 8 hrs...they are nothing for most people but for us they are tiny miracles.
And then we look around us and see the shambles that has become our life.
Lost years often means lost jobs, friends, family, mobility, finances and general health. Children who have grown up without our presence, bosses who have forgotten our names and bodies that have forgotten how to function normally. And that is if we are lucky.
I woke up yesterday and hit the wall. I have lost my last job. I can no longer afford groceries, I am living off of what is left of my meager savings. I call my old clients and they barely remember my name...it has been over 5 years.
I have cancelled cell phone and magazines and am down to the bare minimum. I am out of options.
And I am still paying the medical bills. (private doctors cost a lot).
I seem to have lost me to my disease...And I am not cured, just better.
And suddenly I have the time to realise that I cannot afford the next surgery (spoke with dr. C who needs to reattach my pouch before my valve is permanently damaged and I just can't afford to bring him over or go there to do it)...
I have too much time now and realise that there is nothing left of my life or dreams. Not even a wish.
Hubby is exhausted from all of the yrs of my health and wants a little 'him time'...I don't have the energy.
I want work, I want income, I want my independance back but it feels like it is too late...I have sent out 100's of C.V.s with no responses. I feel lost. And lonely. The phone no longer rings..Days on end of silence.
This illness has just taken too much out of me.
Sharon
Original Post
Sharon,

I relate to you in so many ways. Going from being a type A respected business professional to not leaving the house is where I'm at. When I do try to do something other than medical related appointments I pay for it the next day, because of my fibro.

I know you have been dealing with this almost your entire life. Keep looking and can you file for disability again? You are just one interview away from a job. Maybe you could also look for lower paying jobs that your last ones. I'm not talking about fast food or retail. Just something else you can do in your field - like starting over again but in the middle. I know many that are in the same boat as you are and personally I think they are being discriminated because of being middle aged.

I wouldn't have the energy to start my own business again and can't handle the stress but I wish I could get to feeling better so I could go back and get a less stressful job.

Where there's a will there is a way. Keep on being the beautiful dynamo you are.

Take care
Thanks Tough,
I know that I Should be happy right now, and I am often happier and in less pain than before but when I see the ravages that are what is left of my life after all of this time I am heartbroken.
I never told my family or friends of the pain that I was in (I have a reasonably high pain threshold) but cried alone in the tub or shower...sometimes not being able to move my right side/hip without horrible pain...I never went to narcotics but limited myself to tylenol or advil...I never shared my fears and terrors with my family either...they couldn't understand...they are sort of colour-blind to it all...
Hubby tries, explaining that he will just put off his retirement for another couple of years (he was supposed to retire 3yrs ago!) to pay the bills but he is exhausted too...he puts in 60hr weeks at 65! It just isn't fair!
I want to be useful again...I need to contribute to this world, society, the public...I need to pay my bills...I miss teaching, helping the kids and being part of something bigger than just me and my pouch! I feel like I have been living inside my stoma for the last decade and want out!
The only job offer that I have has thus far is an independant teaching job where the guy wanted to pay me 17€/hr...3hrs travel time each way for a 2hr class and no travel expenses...after charges/taxes & transport it worked out to 3€/hr or 6€ for an 8 hr day! My ex cleaning lady earned 10xs that!
Just demoralised at the moment...nothing a good job wouldn't change.
Thanks for listening.
Sharon
Ps...mom does not have lukemia but some other blood disease...probably auto-immune!
I know how up beat you usually are. You've cheered a bunch of us up on here.

You had to get past not being able of working and you've fought so hard that now you are able to work some there's a huge let down due to the lack of opportunities in the type of jobs that you can do according to your still physical limitations.

You have a wonderful supportive husband and once you get back working you can contribute financially.

I'm glad your mother's illness isn't as bad as they first thought. It would be expensive to come over this time of year as it's vacation time. So you don't need to worry about that, right?

I wish you could get some publisher to look at some of your writing. Have you ever tried sending out a few chapters to see if there is interest in your work?

You got one job offer, if you can call it that, so there's got to be a good one around the corner. I wish you knew when that will happen. Please don't quit trying. After all you've been through to beat the ravages of disease you will be able celebrate in style soon.

I hope you guys have a lovely weekend and the weather cooperates.
Oh Sharon, my heart goes out to you. It seems like there's no justice that you could through it all with the disease, and then the fallout now. You write so well - I'd partly forgetten what it was like at the beginning, and you've reminded me.

I'm wary of saying this to someone who is going through so much, but my mantra has always been: "everything happens for a reason". There are days when I feel like I'm being punished for something I haven't done, and I don't understand why, and the only thing that keeps me sane is the thought that someone, or something, somewhere, knows, and it's part of a bigger plan.

It WILL get better. I don't pretend to know how, or when, but I promise it will. Hugs and prayers until it does x
Cdub,
Thank you for your kind words...it is like living on a roller coaster..;I celebrated the fact that my body was healing beautifully after the galbladder and I was feeling better than in yrs...and then my surgeon reminded me that I still need valve surgery, I am not out of trouble yet and that it is, no matter what, another 10.000€ and I just don't have them. (private medicine)...my galbladder was 6.000€!!!!! and there is not a job in site and my body/soul/life is in shambles.
I am a natural optimist, believe in 'all for the good...' and that something good is waiting for me just around the corner etc...but there are days when my dreams just tumble off the road and I end up in a gully...wondering how I got there.
Friends are marrying their kids, celebrating their graduation from university etc and I am counting surgeries! I want to be able to say 'ouch' in front of a loved one without them calling 911!!!!! I need to be able to talk about something other than sickness and disease...rambling again...sorry.
I will never be normal and most of my life is over so it isn't a tragedy...but I am angy at this disease for stealing my best years!
Sharon
Sharon-I'm so sorry for all the hardship you're dealing with now. I read through a lot of different posts and find that you're always there offering advice and help to others struggling. You have given so much of your time and effort to those in need here. Can we give back to you? Is there a way we an help? Not sure if this is a possibility or you'd feel comfortable but is there a way to set up a wiring fund system and we all do what we can to help get you to the next surgery? I would be in for contributing and would think lots others here would too. I hope others read this and jump in. I wish I could give you a big hug right now. You deserve it. I know I'm newer to the sight but I've genuinely found a special place in my heart for so many on here-even if they don't know it. Sharon- you're an inspiration to all of us going through these surgeries..please let me know if helping you in anyway is a possibility?
You are So sweet Randi and I immensely appreciate the offer but I could never accept a financial contribution (no matter how sweet and kind the donor)...I would be thrilled just to find work again...to be a living, breathing part of society and contribute my fair share...My dream is (and it is a pipe dream but heck....What are dreams for?) to create a Poucher's fund that will allow pouchers in need to have their surgeries, be able to stay in foreign hospitals if need be and have their families by their sides...a kind of give-and-take fund that people repay when and if they can....every time that I play the lottery (and I am ashamed to say that I play 1€ a week but that is my little luxury!)I dream of setting it up with the winnings and creating a fund for surgical residents to help them to specialise in k pouches and fistula surgery.
Maybe one day the dream will come true.
Until then I am sending out C.V.s and I have a r.d.v. with a potential editor for my book....pray that someone will want to read it! (or even publish it!).
Surgery can wait until the money comes in...until then, thank you for your kind offer and even kinder words.
Sharon
Sharon-I will pray for better things to come your way. Please pursue the dream of a pouchers fund. I think it's a brilliant idea. You're a beautiful woman both inside and out (I see from your pic) The world needs more people like you. Stay strong and positive and I will keep you in my thoughts.
Sharon...so sorry ot hear of your recent troubles......BUT hopefully thing will go your way soon...if all of our positive thoughts and energy are directed toward you....it WILL get better.....you have a ton of support here
Thanks Judy,
A bit better today, sending out my C.V.s daily for jobs that pay 1/4 of what I used to earn and will all go to 22yr olds but I am not giving up...I would love to go back to school and get a double diploma in psy and in nutrition but it may not be possible or just too late...I am looking into it anyway.
I need to be busy! And useful. (and earn an income)...so...I had may 3 day cry, my 3 day depression and now back to real life.
Thanks for be so supportive.
Sharon
I think it's when we get all better that PTSD can hit with a vengeance. Our brains are no longer occupied with all that other stuff and with all that new room available the trauma moves on in. Maybe a change or uppage of the meds might help for a while.

kathy Big Grin
Absolutely right Kathy,
It is when my stress level dropped the depression level (PTSD?) rose up and bit me in the rump...now I have doubled my level of exercise to try to lower the emotional charge and it seems to be working but I am now a bit of an insomniac and I am taking out the anxiety in food...
Dixie, for the moment the Ties is still in the early stages of testing and unavailable for residents outside of the county...they will branch out into Europe in a year or two so I am hanging on to the hope for now but I would still have to cover everything myself except maybe the surgical fees and even that is not sure...
To be continued as far as the Ties is concerned.
Thanks for the idea though
Sharon
It's not just you. This economy sucks. I was 2 weeks from being homeless when I finally landed a job. I've done all of this single, only 1 friend remains, and one side of my family has disowned me and the other side I don't talk to much anymore.

But on the bright side, I'm alive and I still have my dog. Without him, I don't know what I would do.

It all sucks. . .and so does the PTSD that goes with it. But hang in there!!
What would we do without loyal pets? They are the only ones who listen without interrupting and will snuggle up no matter what mood you are in. And they always have those dreamy eyes that make you melt. My kitties keep me smiling, but I love dogs too.

It is true what they say about cats and dogs helping lower blood pressure and getting those happy/good chemicals flowing in your body!

Jan Smiler
I miss my dogs...can't have them anymore, not with my crazy life...Too many hospitalisations abroad for me to be able to keep one...but I did love my puppy when I was a sick kid...she was the only thing on this planet that kept me going...and boy could she make me laugh.
After my dad's stroke (he became hemi-plegic) his maltese became his arms and legs....he would bark until someone came when my dad fell or bring him the T.V. control or go get his socks...he slept on the bed beside him and watched over him for years...He really suffered when he died.
I dream of one day getting another dog...
Sharon

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