I have wondered what to write about this journey I am on with DH. How have we done it? Because we had to. This is my Lyme resumé. This is more or less just the facts of my illness since 1995.
There are many more things going on in our lives than this: amazingly we travel, sometimes for access to medical help; sometimes with friends and sometimes just us. We listen to live music when we can. We eat good food, and drink good wine, when we can. We garden, we research, we fight for our elected officials. We write.
About what we have learned; about what we love.
We have lost a lot: friends, family, our livelihoods, our home. But given just a tiny chance we live well and savor the moment.
This is my story, so there is no judgement to be passed. I came from the straight and narrow engineering world and western or allopathic medicine. But I have learned some things: there is never a bottom to the humility one so sick must learn; there is no medical stone that can't be turned over, which includes Naturopaths, who look at us in the face, and feel our bodies to see where we need help. It takes a team of medical help and a variety of specialties. It takes money we don't have. It takes energy and will we oftentimes don't have.
Many doctors have saved my life over the years. It has gotten harder to say "Yes!" I'll give it a go. But DH hasn't given up, so neither may I.
Update: I know this is long , and not a particularly writerly read, but it took some courage to get this out in public and just to get out the facts of my last twenty years was a way to break the log jam I have going. Thank you so much
May is Lyme Disease Awareness Month. The CDC recently changed their yearly new case count from 30,000 to 300,000. Because many with symptoms like mine are diagnosed with MS, Fibromyalgia, Chronic Fatigue, ALS, Parkins and other "auto" immune illnesses, the diagnosis of a treatable bacterial disease complex is delayed, leading to intractable illness. As with Borrelios (Bb), the diagnosis of these is with markers and rule outs rather than tests.
Follow me below the Kos doodle to read my resumé. Open your hearts and open your minds, there is no one answer and while I welcome support, please don't pity me.