When You Bury Me Make Sure It's a Huge Party

Today I attended a funeral. It was the most difficult funeral I have been to in my life. I wasn't friends with the guy, though we were sometimes at some of the same functions and had even gone camping together. But the family was good friends of good friends of mine so I often heard about them. And up until a couple of months ago my husband and the wife were involved in professional circles together. He was killed in an accident in his garage. He left behind a wife, three beautiful young daughters and many, many friends who will miss him dearly. He was 34 -- the same age as me. As I said, it was absolutely the most difficult funeral I have ever been too in my life. As my husband and left the funeral home and were walking through the parking lot, I looked at him as said "When you bury me, make sure it's one big ass party." He looked at me odd and kind of tried to smile. It wasn't until later that what I had said started to sink in.

My husband and I have only been living the "chronically ill" life for a few months now. The whole concept of pills and doctor's appointments and lab work and research and lifestyle changes and diet adjustments is still pretty new to us. I know that much of my new life still hasn't sunk in with me yet. I know that I am still not slowing down the way I should be or learning to prioritize rest over other things. I know that the fact that I have severe kidney involvement that could potentially lead to renal failure if I do not respond to the medications hasn't totally been absorbed and processed by my brain. I would think if I had I would be far more concerned than I am. Maybe because I try to make light of things so as not to worry my family and friends, I myself have taken that "it's no big deal" attitude. Don't get me wrong though, I still take all my meds as prescribed, attend all my doctor's appointments and have the required lab work done in time for results to be available at the appointments. My husband and I are making changes to our diet as I do more research. And I am beginning to research alternative therapies to work in conjunction with the pharmaceuticals. But I just don't think the idea that I will be living with this for the rest of my life has entirely sunk in yet.

Years ago a Lupus diagnosis was a like signing a death certificate. Patients generally only lived 5 to 10 years if they were lucky. But that was because diagnosis took so long that significant organ damage had usually occured and there was no way to treat it. Now, with earlier detection and better medications, patients are living longer, normal lives. (There's that normal word, what exactly is normal in a Lupus world?) But I wonder if that means I will be living until 60, or 80 or 100? Will my husband bury me or will I bury my husband? Is this disease going to rob me of years with my family, or will I die old like my grandparents? Will I dance at my children's weddings? Or my grand-children's weddings? Will I get to continue to work or will I be forced to retire young? Will I get to start my second career the day after my youngest graduates from high school or will that become a lost dream? There is just no way to know. There is no predicting anything. I almost wonder how one is supposed to make plans for the future, for next year, or for next week when one lives with Lupus. I sent in my registration for a conference I have to attend for work next month. Registration monies are paid and hotel rooms reserved. But in the back of my mind I wonder if I will feel up to going. And if not, will I still go anyway and put on the brave face because I want to keep my job, or will I have the strength to let my boss know that I can't go. There is just no way to know.

Until next time, take care of you.
Nicky