somesickdude

This about sums up my situation. I saw one of the top neuro muscular specialists in the world and she flat out said to me, "Nobody wants to hear this, but I have to be honest with you. There is no cure and there isn't much hope for one. Since this is such a rare condition there is no money in trying to find a cure. All we can do is treat your symptoms and try to help with pain management. Beyond that just hope it progresses slowly."

I'm not posting under my normal account as would prefer not to publicly disclose this to everyone.

There is no right answer as to whether we should save for the future or spend every thing we want to do now and say fuck it since tomorrow may not come.

I do believe it would serve well to try and strike a balance if possible.

Forever I was only a penny pinching saver and thought everything could wait until I was able to retire (hopefully early).

Then at age 29 I went in to see a doctor after I started to get extremely sick. I was a health/gym nut, but over the course of a year I had zero energy and couldn't recover from workouts. I started having blurred vision, shooting pains, seizures, vertigo, random falls, blacked out a couple of times, dropped about 30 pounds, and most of my hair fell out.

After seeing quite a few doctors they found I had a developed multiple auto immune disorders, one of which attacks the pathways in the brain.

When I was diagnosed several neurologists came and spoke with me and explained they could treat the symptoms, but that was it. The prognosis was and still is, they don't know. The illness is remitting relapsing so I will get so bad I'm that I honestly want to just die so that my pain can stop. Then six months later I'll feel almost normal and wonder how long it will last.

The doctors say if I survive it long enough I will eventually be in a wheelchair or housebound. Maybe though my lungs will just stop working long enough that I suffocate.

The week before last I was back at the gym working out like nothing is wrong, then last weekend I collapsed in my driveway. Seizures are back and my wife wants me to get a cain or something to help prevent falls as this one about landed me back in the ER.