Advocates

[Guest guest]

I've been reading over the emails and find a theme here.

All of us know that the day will come when we need someone to be our voice. While it is normal that we don't want to concern our family, it will be your husband or kids that most likely will need to speak on your behalf.

Every hospital in the US has a Durable Power of Attorney form. This form allows you to put in writing what you would want done should you find yourself unable to speak. You can choose to have your life sustained with Life support, ventilators, drugs, feeding tubes, etc.

You can also choose to for go those life supports and put in writing just how much support you want.

One thing to remember, if you call 911 and have an ambulance come out, they are required to do al they can to keep you alive, including zapping you back if your heart has stopped.

If you call the LOCAL ambulance number, then the paramedics can honor your Durable Power of Attorney.

The other half and most important part of this issue, is that as we refuse to explain our illness and educate our family on what this illness does over time, we DISSEMPOWER THEM to be able to help us.

I know it's so very hard to discuss this illness with our kids and spouses. They don't want to hear that we could die from this. But they need to know. They need to be able to walk into that ER room and tell the MD that we have advanced Neurosarcoidosis or Multi-system sarcoidosis. They need to understand that this will cause TIA's or CVA's. They need to know that the advanced pulmonary disease Stage IV carries with it a high risk or pulmonary hypertension.

They also need to be able to explain that we get heart arrhythmia's because often the sarcoidosis causes inflammation of the pericardial sac (the sac that allows the heart to float in electrolyte fluid and beat properly). They need to understand that if we get dehydrated, or if we have scarring or valve issues that it could very well be the sarcoidosis.

They need to be able to say "My wife, husband, mom, has advanced multi-system sarcoidosis, and doctor, you're looking at the 5% of all sarcoidosis patients who's life is threatened by the sarcoidosis.-- Look seriously at what is happening, and please-- do not jump to the mental health, depression issue. We need to make sure that the loss of speech, the loss of word comprehension and hearing is not a stroke." "Or that the pain in the gut, the belly, the abdomen is not an aneursym."

Yes, I'm going to the extreme. It has kept me alive. It has kept several others alive.

I do understand that this will be the most difficult talk you'll ever have with your family. I know that it means that we have deal not only with our own emotions around all this. By opening this door, we will have to deal with the families emotions also.

I do understand that when you're so stinking tired, and can hardly deal with your own stuff- that this is the brick wall we'd all rather avoid.

I know that i have to do this with my guys, and family. It's hard. I also know in my heart that they want to know-- and need to know. Please, seriously consider talking with your family. Honor them by giving them the information they need to help you. If your family isn't willing to help- or is just too far away then confide in a friend or minister or neighbor that is willing to step up to bat for you.

For all of us,

Tracie

NS co-owner/moderator