Thursday, August 29, 2013

Introduction: Living With Chronic Lyme Disease: a long and difficult journey

Doing What I Vowed Not to Do

I have decided to write my own personal story of living with Chronic Lyme Disease.  It is becoming an ever growing passion of mine that Chronic Lyme Disease become officially recognized in the medical community. It is one of the largest growing illnesses of our time, and its chronic form is largely denied by most doctors (ones Lyme patients refer to a non-lyme-literate doctors). I realized how much I needed to write about this when three more of my friends/acquaintances were recently diagnosed and treated for Lyme and still another  goes with no treatment after his parents found yet another tick embedded and his doctors simply want his parents to watch and report any illness that should follow.

None in my family can stay silent when we hear such news, as we personally know that Lyme is a disease that needs to be taken seriously. All of those affected by Lyme, we feel, should be fully informed regarding the status of this disease in the medical community, the different schools of thought regarding treatment and the consequences of not treating it sufficiently. Sadly, some will not want to be informed, though I respect their choice.

I feel sick inside when I hear of so many acquiring this illness, though I forget that for them it may be different.  Perhaps they will be one of the lucky ones that get adequate treatment in time so they will not experience the long term effects of this dreadful illness.  I was not so lucky.

I vowed when I started my blog, not to write about Lyme, politics or religion but I have decided to break this vow.  I am going to tell my story, including the politics surrounding this illness and the faith that keeps me going.  It will be a series of seventeen blogs for those that are interested and I will post them in between my regular home arts blogs.

My intent is not to scare anyone. I will merely tell my story of living with Chronic Lyme Disease.  I consider living with this disease to perhaps be the single most creative accomplishment in my life and perhaps telling my story of going too many years without a proper diagnosis, will prevent someone else from doing the same and avert the struggle that I have lived. Knowledge is powerful and I often wish I knew then what I know now.

I believe that it is a story of hope for whether you are dealing with this illness or another, there is much to be learned spiritually, mentally and physically from dealing with something bigger than oneself. There are many ways to live life to its fullest despite limitations, and I hope that my story will encourage others to do the same or perhaps be of support to those who find themselves in a similar struggle.  For Chronic Lyme Disease patients, this is actually not an uncommon story.

I have intentionally broken up my story into short readings. It is a telling of facts, as best I remember them. I have attempted to cut out the extra drama and complaints, though to be sure, as I struggle with this disease  I have and continue to live with plenty of both. I believe that long term treatment aimed at the cause of the disease rather than its symptoms has enabled me to greatly reduce, if not eliminate many of my symptoms and has increased my hope of arresting this disease once and for all. (to be continued....)

(The illustration above is done by Hannah McMillen; figure drawing by Sarah Kate McMillen)

(*Caution: These blogs are not meant to be actual medical advice but rather meant only to empower others to face medical issues as equal partners with their medical providers and never give up questioning and exploring what alternatives may be available for conquering any illness.  Living life with a chronic illness is a daily challenge and it is my prayer that no one give up on living their life to the fullest extent possible.)