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I just don't know what to do to get my mind right.  I want to spare anyone who reads this a poor me book so I will tell the extreme short version. I will keep it to a couple of poor me paragraphs. Was diagnosed 12 years ago.  In twelve years I have been in remission for a grand total of 3 weeks.  8 surgeries.  Couple of dozen stays in the hospital.  Crippling arthritis. 6'1" 113 pounds with winter clothes on.  Became totally disabled and not able to work about 4 years ago.

In a way I'm fortunate because Social Security approved me for disability and I was able to upgrade my medicare so I have some coverage.  That was needed because after all my treatments, experimental treatments, and surgeries failed my wife gave up on me with everyone else and tossed me like a worthless piece of trash after 10 years of marriage.  My friends and family have done the same thing.  People just get sick of having pain and bad news in there life after a while.  They can get through a battle with somebody for a year maybe two.  But if the battle is never ending sooner or later they amputate it.

My question is.  Has anyone been through illness this severe and come out of it with some kind of life?  I just don't see a way for my life to get better again. I worry about losing the only income I have because it seems we won't be able to afford it if things don't turn around with the economy.  If I do get better and they cancel SS for people my age (36) I am up the creek.  I have blown everything I had for retirement / to old to work on hospital bills.

Got anything I can think positive about were the future is concerned?  I really need something to focus my thoughts on at this point.

 Reply posted for Putter65.

There's always someone doing better, and someone doing worse.

When I'm the most down, I try to help another in some way -- tutor a child, help someone online with a technical problem they're having, hold open a door for someone.. so that even if things are going as bad as they can be for you, you can make a positive difference for someone else.

There are many, many treatments available; every one will work for some portion of people, and not for others; diet, lifestyle, etc.

Have you read about the "hygiene hypothesis" and the work done in Dr. Weinstock's lab at Tufts since 2005?

 Reply posted for Putter65.

I appreciate all your kind words.  The problem I am having is I am past all that.  I don't know if there is anyone on this earth  who has spent more hours studying this disease.  Thinking positive about the next treatment.  Positive about every surgery. Tried everything.  I was not kidding about the amount of surgeries, hospital stays, TNA treatments, Clinical Trials.  I have tried everything.  No remmission.  That means not one single break from this disease in 13 years.  Always makes me chuckle when people talk about flares.  Try being in one for 13 years straight with no break.  It comes back before they remove my staples after surgery.

So again. I'm left with.  Does anyone have anything to look to after all this?

 Reply posted for Lizzies Mom.

I second Lizzie's Mom! 

I am living proof that there is a future.  I am finally financially, emotionally, and physically recovering.  I had to take total control of myself.  My kids love me but they have no patience with my health anymore. 

The doctor's method was not working so I went my own way.  It takes a while to heal.  The foods I eat play a major role in my emotional and physical health. 

I have spent countless hours researching.  I am determined to dance like no one is watching!  I live a very normal life now.  Sometimes I have to say no and take a nap.  I had to start healing emotionally before I really started healing physically.

People who walk away, well, I was taught to say nothing if I could not be nice.  Know that you have a cyber "family" that is here for you. 

Hugs!

Breezy

 Reply posted for Putter65.

The answer to your question is absolutely, YES.   People do have this illness or another in the like and live very productive lives.   My daughter for one.  Imagine if I just gave up on her once her diagnosis was confirmed.....she was 4.  I am happy to tell you she is a very intelligent, kind, compassionate girl, a gifted/strong gymnast, and will be turning 11 in January. 

You are not alone in this battle....there are many, many people just like you.  I have always preached to not let this disease define you......you need to define it!   Really, when given lemons....what is one to do???  Make Lemonade.   

Take small steps, make a small change every day and see what happens.  If you continue to do the same thing, day after day and not get anywhere, then you need to change it up to get a varied result.  I learned that early in my career.   Change your mindset.  You can't change the past, let it go, it is behind you....but you can change the future.   What are some of your  interests??  Start doing them again.  

Educate and read, read, read.   Start right here on this site..."Alan"  has some good advice about nutrition/diet and always recommends certain web sites to check out, books to read.  You have nothing to lose by looking into them. We are all here to help each other. I hope this gives you a "nudge" in the right direction.  Stop what you are doing, get up and do something.  After all, something is better than nothing.

I wish you the best and Happy Thanksgiving.  

Lizzies Mom