Tuesday, September 24, 2013

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

Part Seven: Life Goes On and Disease Symptoms Progress

We lived on the farm for six years before the owners decided to sell it. We were heartsick about the decision and yet knew it was time to quit renting and get back into a house of our own and so we relocated to the nearby town of Castleton, putting us only a short distance from the small city of Rutland, and still only a fifteen minute drive down the road from our collection of new Vermont friends, and also a bit closer to my husband's work.

We had learned the difficulties of being too rural and Castleton was a beautiful little college town, with more local ammenities and we moved into an air-tight almost new house.  Stress came with having to use our window shades for privacy once again, but it was still semi-rural, and our beloved Vermont countryside was still there to enjoy all around us. Our new home offered us walls without the scritch-scratching of critters within them and the cold didn’t blow in. It was very quiet and nice and we were ready for a more modern house, though it was a good deal smaller than the farm house.  It was a local move and easy next to our cross-country move.  We did miss the wood stoves we had on the farm when the power went out, but in our new home, the power outages were less frequent.

I was tying fishing leaders for Orvis then as my school job only lasted one year.Leader tying allowed me to stay home with my youngest child, and was relatively stress free, though the work wasn't always consistent,so I decided to return to nursing for greater job security and did a refresher course at a nearby hospital to renew my RN license. I went onto achieve this goal and the next, becoming a per diem office nurse in a family practice. The leader tying work became an extra job that my husband and I did on the side with the help of our girls. Working per diem was nice as it gave me the option of having some days off as I needed to accommodate days I didn't feel well  and with the side "leader work" our income was pretty steady. As long as I was on level ground and wearing "sensible shoes" I was steady on my feet. I was already noticing that with patience, it seemed that my symptoms would pass, but others would replace them.

Serious headaches and frequent bladder infections were my next symptoms. (Spirochetes move into the brain and also the bladder walls—again I learned this much later). I was under the care of my GP as well as a rheumatologist and a GYN doctor, and as with all my other symptoms, I was treated for separate acute illnesses and it was thought that CFIDS made me more susceptible to them.

My headaches would make me pace and cry in the dark or sometimes rice-bag my head to my pillow to decrease the dizziness that sometimes went with them. It was so bad one day that I had to call friends to pick up my kids from school and summoned my husband home.  I couldn't move without the entire room spinning. Dizziness had turned to vertigo and I remember sticking my head in a pan as I was so nauseous.  I even rice-bagged my head  to my pillow to slow the spinning sensation and crawled to the bathroom, as I couldn't walk. My doctor prescribed Antivert over the phone, and I saw him only when I was better and could travel.

Emergency care at our local hospital, I had already learned, was to be avoided.  I was chemically sensitive and so, many medications given to decrease my pain or alleviate my symptoms made me actually feel worse, not better.

UTI’s (urinary tract infections) were frequent and came on suddenly and violently.  I was on a standard antibiotic treatment for them and always kept a supply of bladder anesthesia medication in case I couldn't get in to see my doctor right away. I simply carried on doing the best I could to deal with chronic exhaustion, and these more acute flares, working per diem as an office nurse and helping to raise our two girls. I didn't even stop to consider alternatives to my treatment—which at the time, I would have simply asked, “what alternatives?”

I figured that pushing myself didn't really do any harm, as no matter what, I would be “down” the day after any good day, so I made “hay when the sun was shining”. My do-list was readied when I was horizontal in bed or on the sofa and I worked as efficiently as I could when I had a good day. I sought hormone replacement treatment (HRT) as I still felt like my illness was cyclical and must be related to the only cycle I knew I had, and was still trying to blame it on hormones or lack thereof. Our move to the country had not cured my ills, though small town living certainly made it easier to connect to our community and I don't know what we would have done without the support of friends. (to be continued....)

The illustration above is done by Hannah McMillen and the 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 their illnesses.  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.)


  1. lcodachowski@yahoo.comSeptember 25, 2013 at 6:28 PM

    Hi Jane, You write so clearly and honestly about living with a chronic illness.I am confident that it will touch many readers and hopefully be somewhat cathartic to you. Thanks I look forward to the next installment. Louise from Massachusetts

  2. Thank you Louise. In future blogs I will talk about the split in the medical community regarding the acceptance of this illness and the issues it causes for those struggling to get proper care. It is my hope that the telling of my story will add to the testimony of others that this illness exists and that the medical community needs to support research and education so patients aren't caught in the conflict. The illness is hard enough to cope with without persecuting the patient for having what is currently a politically unacceptable disease. My blogs are brief and will touch on all of these issues. A book would likely more adequately cover the subject of Living with Chronic Lyme. Thank you so much for your interest! Jane