i know about long term illness. i am very familiar with the definition of “chronic.” that was my life for six years. days and weeks of feeling like i was all alone, in the middle of a foggy redwood forest, up to my knees in quicksand with no idea how to get out. sound familiar?
this is my story. at this time, i had no idea what lyme disease even was. the fog was too dense.
this is how i found my way out.
while it has been the hardest trial i have ever been through, i can say now that i am thankful for it. it has brought me to so many incredible people and experiences and ultimately, it brought me to this new chapter in life, becoming a health coach. if i can be that beacon of hope to just one person, that arrow towards the horizon of a better life, then that would be the greatest blessing.
it was 2010. my husband and i had driven four hours away to an adorable bed and breakfast for a weekend getaway. the previous year had been big- we were married in july after a three month engagement. after a ten day honeymoon, i packed up my life and moved to canada where he and his family were from. we had spent christmas all together in florida and while i felt off while we were there, i chalked it up to the late nights and holiday busyness. it was a great time, but a few weeks later will and i were ready to get away for a few days and relax. it had been a whirlwind 6 months since the wedding.
the inn was gorgeous– like, old victorian details gorgeous. but it was impossible to appreciate those details because that first night i didnt feel well at all. a fever started and then the pain. those three days turned out to be just the beginning- a major UTI hit me hard and we were stranded in the middle of nowhere during a series of thunderstorms [tornadoes touched down just a half mile away from us!]. i had no antibiotics, no cranberry juice, nothing that could help. the pain was unlike anything i had ever felt before. i cried with each trip to the bathroom – about every 15 minutes because of the urgency. will felt helpless. he had no idea what to do, poor guy. i had had a couple of UTIs in the past, but nothing like this. we found out later when we drove home straight to the doctor that it was a compound infection- meaning more than one type of bacteria had grown out of “normal” parameters and was contributing to that awful stinging, knife slicing you open pain that is a common sign of of a UTI. a heavy round of antibiotics helped, but our weekend getaway had been ruined.
over the next year and a half, i came down with one UTI after another, every few weeks. it was frustrating. i began to feel like i was “broken.” i became very familiar with my doctor’s office and the walk in clinic near our house, spending hours waiting to be treated. i was a pro at giving urine samples and predicting what type of bacterial infection it was depending on the type of pain i was having. it became a game to me. i would wait 2-3 weeks for ultrasounds only to have them come back “within normal range.” my periods started becoming really weird and i began to feel like a different person.
i was eventually given a standing order of antibiotics, to take every night and whenever i felt like an infection was coming on. hyper vigilance started, me analyzing every twinge of pain and bathroom trip, looking for signs of the impending doom. fear took over my life. as the weeks went on, i developed antibiotic resistance to the common drugs prescribed for these sort of things. my immune system disappeared and random fevers became common. i was working as a nanny then, and each time one of my charges came down with something, i would end up with that same thing within hours. i was exhausted, unable to sleep, and emotional. before this, i had never been sick worse than a sinus infection at the age of 12. but here i was at 23, suddenly realizing how much i had taken my health for granted.
in the spring of 2011 i was finally able to meet with a specialist, a urologist, one of the two in the city. i had waited six months for the appointment. after spending four hours in the waiting room for a 10.30 am appointment, i was finally ushered to a room at 2.45 pm. i was exhausted, hungry and on the edge of tears. the urologist came in, asked me a few questions and said, “well you’re just one of those women who are prone to UTIs.” i replied, “i refuse to believe that modern medicine doesn’t have a way to help women like me.” he seemed surprised at my words and begrudgingly scheduled a cystoscope to check my urinary system for any anatomical problems.
the procedure was done that fall and two weeks later i was back in his office. [after just a two hour wait. progress, folks.] this time, i brought will, who discreetly started the stopwatch feature on his phone when the doctor came in. the conversation went like this:
doctor: “well, your cytoscope showed nothing wrong anatomically with your bladder or urinary tract. looks like you are just special.” he smiles. it was the kind of smile that made you feel about two inches tall.
me, on the edge of tears: “i just cant believe i’ve had this many infections for almost two years now and there is nothing we can do. what am i doing wrong that i keep getting them?”
doctor goes over the usual- wiping properly, emptying my bladder properly, drinking lots of water. “i don’t know what to tell you. you are a woman, and women get UTIs. i don’t have any magic beans for you.” he stood up, ready to leave.
desperate at this point, i try one last time to speak through my tears. “is there anything natural i can do to at least try preventing them from happening? all these antibiotics are wrecking my stomach.”
“d-mannose.” the door shuts behind him. i wasn’t even sure what i had heard. will hit the stop button on his phone.
4 minutes and 28 seconds.
we went home, me crying, feeling like a total failure as a wife especially because of the effect my being sick constantly has had on our marriage. we had canceled trips, missed out on fun with family and friends and i was at my wit’s end.
by this time, i had stopped feeling the “usual” signs of a UTI and had experienced 2 kidney infections– the worst pain and sickness of my life. the first one came soon after that first urology appointment. my fever was 104 and will woke up one night to find me delirious and shaking uncontrollably in bed next to him. he rushed me to the hospital where they found me to be near septic- the infection was so bad it had moved to my bloodstream and was close to poisoning me. he had acted just in time. i hadn’t even felt the symptoms. (we later found out this was due to the scarring of my nerves in that area due to the repeated infections and drugs.) recovery took two rounds of antibiotics this time- 28 days of pills and a wrecked stomach. nausea and throwing up was all i could think about. my life was being controlled by tiny microscopic bacteria and i had no idea what to do about it.
that day, in the car home from dr no-magic-beans, as we have come to call him, we had had enough. i was trying to be brave, i was trying to be positive. but it was time to face the fact that something was wrong and we needed help. that day, we met our breaking point. something had to change.