I have had peripheral neuropathy since 1/2/94 when I was 24 years old. I had recently graduated from college and had my whole life ahead of me. Then, on a plane ride home, my legs began to burn and this tortuous saga of 19 years and counting started.

I was diagnosed with mild postganglionic autonomic neuropathy in August 1994 at Mayo. Well, it was mild until about a year ago. Since then, my life has been a living hell. My wife was diagnosed with breast cancer last year, and my heath is falling apart. I have three beautiful boys under ten, so I cannot leave this realm, but every day hurts to stay too. Most days, I pray that God might come take me so that I didn't have to do it myself. I wonder every morning when I wake whether I will be able to get out of bed, get to work, and make it home again. When I do, I feel like I've been put through a sausage grinder. I fear for my innocent beautiful children and what might occur should I not be able to provide for them. The anxiety from a new job (taken a year ago, not coincidentally) is awful. I can't sleep through the night ever because I feel overwhelmed. I don't know what to hang my hat on to sustain me and provide hope.

And it is hard to find anyone to empathize, because you don't really know what neuropathy is like unless you actually have it. So mostly people tire of me talking about my pain even as my suffering gets worse.

I pray that someday they will find a medication that truly makes a difference, because everything thus far has been a small band aid on a gaping wound, so to speak. While remarkable advances are made in other fields, not nearly enough has been done in our field, and I pray that we will band together as one voice and demand action from our government officials. Far too many people are suffering from a disease that not only do too few even know about, but most that do think you must be exaggerating.

I grow weary from the fear of my future and the incessant anxiety. May God's strength sustain me until hopefully I return home tonight.

Be well.