I hate this ******* disease! it has taken EVRYTHING

I have major experience in suffering from severe diseases, but eventually, it's the EM along with its accompanying symptoms that seem to defeat me. I can no longer live this way.

My EM is so severe, and since it has spread to my hands, there is no place for hope left.

The worst part after all is that probably my EM is mainly secondary (though I have a non-classical genetic predisposition). If the docs had listened to me everything could have been prevented. All that would have been neccessary to heal the EM at this stage would have been heparin treatment . I had come so far, but everything was in vain.

I can no longer live in agony. I dont deserve it after having fought a brave fight against my other severe diseases and IGNORANT and ARROGANT doctors for so long. I don't want to give up but I hope something happens very soon that changes my situation rapidly.

I am so sorry that all your conditions have left you feeling so low, pelztier86. Do please use the services of the crisis helpline (see the box on the right of your screen) if you feel unable to cope. Kindest, Jules

I am so sorry. Please don’t give up.

People suffering through this… we reach our limit sometimes. And then some.

When this happens to me, and somehow I keep going even though I just can’t bear it anymore… Then it gets a little better somehow. Or I get stronger. Sometimes I just focus on the people who love me.

And then I look for things that help. And there are things that help. I think about what situations where it is the worst, and figure out ways I can get cooling to me or get off my feet during those times. What can I make or bring with me during the times that it is the worst? Some of these message boards are really helpful. Finding something that helps is always amazing. It takes away some of the helpless and trapped feelings. Not everything works but some things do. You keep going and trying things and ideas until you find one that is a winner.

My own EM started in my hands. It was awful. Especially at night. Then it mostly moved to my feet. And that was the real agony. And the disabling thing.

Here are the things that work best for me:

For hands, these type of cooling scarves (link below) work so well for me. I could plunge my hands into freezing ice and get no relief. But I hold onto these through the night and it brought so much comfort. Even though they are less cold, they get the cooling deep inside my hands more. I actually make my own or buy the cheap ones, open up one end, add more filling, and close them. I sew them shut but you could just tie a knot.

The puffier ones are the best, they look like this after adding water:


You can buy the filling for cheap. This makes a whole ton of the stuff. When it hydrates it grows 5 to 10 times.


These are the cheap scarves that I add filling to, because there isn’t enough filling in them:

And these are very cheap and we’ll made, but thinner and smaller:

if your skin gets moisture sensitive, I put them in cheap plastic bags and use them that way.

When you have run out of the ability to cope, it means that you haven’t found the right coping techniques or tools to see you through.

The anger at the doctors and the injustice is difficult. I have seen terrible injustices myself, and the feelings involved are complicated and intense. The stories I could tell… but won’t. Nobody needs to hear about a suicidal 7 year old.

But I’m still here. You are too, I hope.

There are terrible things that happen to us, and sometimes the effects are permanent. My only advice is to not let the feelings of being wronged cause apathy, as tempting as it is. Keep trying. Keep struggling. Find the things that work for you. Make things that work for you. Don’t stop until you do. Find ways to help others, that brings even more peace. Your life is changed, and it is awful sometimes. I know. But it is not over.

If you keep trying, even when it feels like it’s to hard or too painful, even if you need to blow up once in a while… thats ok. We have all been there. And so long as you keep going and trying, life does get better. Especially if you find people you can talk to along the way. Friends or good professionals who Care… either ones help.

You may not need this… but I have lost friends before. So I think it is better to put this here even if you don’t need it, than it is to ignore the possibility that you might.

So here are some places you can call or find help with suicidality. Even if you are not terribly at risk, sometimes these hotlines help keep a person from getting worse. They really helped my brother once upon a time.


Like I said, please don’t be offended by my over-abundance of caution. I’m just tired of holding desteoyed, broken people whose lives are ruined because someone they loved gave up. And if you need help, please get it. Or message me.