Thursday, November 21, 2013

Part Seventeen: Living with Chronic Lyme Disease: a long and difficult journey

Part Seventeen: Encouragement to Never Give Up

I have completed five successive years of treatment on the Marshall Protocol and six months of other treatment prior to starting it. This does not include other treatments that have lasted days, weeks or months before.  The end will be determined by my body versus the number of years. I did suffer a minor stroke in the middle of this treatment, and was fortunate that my return of function was no less than remarkable.

I don’t count the days till the end of treatment Iike I used to. It is a way of life for me right now.  I take few prescription medications. Although I still suffer Herxheimer reactions, I am otherwise comfortable in treatment. These reactions, I am told, are signs that the MP is still finding bugs to kill and is considered good, no matter how inconvenient. I am learning to live with this paradoxical thought process.  It isn’t too different from other sorts of disciplines. Persistence in the day to day tasks is never easy, though the outcomes are desirable.

Life is good and getting better as my health improves. Will it make me well?  Who knows, nor do I know how long its effects will last. That is not what matters. It is the necessary investment in living my life as completely as I can. Of course no one knows the course of their life, and it is just as well that we don’t. I simply live it prayerfully day by day.  This has been a long and difficult journey, but there seem to be no losses without gains and no gains without losses, and I am ever so grateful for my life, no matter the hardships and struggles.

I sometimes worry about my girls and their future or even sometimes about my own and my husband’s.  His recent lay-off was another "bump in the road", but I am learning that in all issues we experience in life, there are opportunities for creative problem solving and all of us will, no doubt, get ample chances to courageously and creatively live our lives, taking one challenge at a time, one day at a time.

I hope that my journey will in some way encourage you or another to fight the fight, keep the faith, seek knowledge in whatever illness or problem you struggle with so as to better advocate for yourself and be a careful consumer of medical care or other forms of support or assistance.

There are no perfect doctors or nurses or counselors—trust me on that one! Though trust is important in a patient-doctor-therapist relationship.Trust yourself even more to know when to seek more information and dare to ask the hard questions.  Where is my illness going?  Am I overcoming the issues that I have and how can I change the direction of their course? What can I do to take better care of myself?  Is there something that my present doctor or treatment isn’t providing?  This isn’t about being critical, selfish or demanding. This is about maintaining what is most important to your life, your health and well-being.

For me living is about loving our families and friends and taking care of ourselves and our homes and creating bits of what is beautiful and comforting—a form of prayer and praising the God that has blessed us all. Do take care of yourselves, each and everyone.  We may well live a long time and where will you live, if you don’t have a healthy mind and body?

(This is the end of my seventeen blogs on Living with Chronic Lyme Disease.  Know that at any time I welcome any questions you may have.  You may post them in the comment section or email me privately at  I would be happy to answer them from the experience that I have lived.  I am not an expert on the care of others with Lyme Disease or Chronic Inflammatory Illness, though I have become an expert when it comes to my own care. None of my blogs are meant to be actual medical advice but rather meant only to empower others to face health issues as equal partners with their medical providers and/or counselors and never give up questioning and exploring what alternatives may be available for conquering the issues that you are facing.  Living life with 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.)

(The illustration above is done by Hannah McMillen and the figure drawing by Sarah Kate McMillen.)