misdiagnosed and a ray of hope.

yesterday we met with a specialist in San Diego who confirmed we were right in that I had been misdiagnosed…that for the last four years I did not have relapsing-remitting multiple sclerosis, but, in fact, have had Lyme disease all along. at the stage I’m in, it’s referred to as chronic Lyme disease and is complex to treat. it’s incurable when it reaches this stage, but with the help of treatment I should have hope of a better lifestyle in the future.

it will be a long road, as she told us to expect two years of treatment and can’t promise exactly where I’ll be by then, as every patient is different. she explained that I not only have Lyme disease, but also have at least one, if not more, of the co-infections that are commonly associated with Lyme. the combination of diseases is no surprise with the wide range of symptoms I experience (I just added symptom #64 to the list this past week – I wish the bugs understood that this is not a competition). we also know that most, if not all, of the treatment I need will not be covered by insurance and we can’t afford it on our own…treatment will be somewhere between $20,000 – $25,000, with the bulk of it needed in the first year. some dear friends are helping us put together an online fundraiser that should launch within the next week. your prayers are so much appreciated, as well as helping us spread the word about the fundraiser once it’s launched.

in my treatment, I am to expect having days, even weeks, that will be even worse than what I’ve experienced thus far. thanks to some friends and acquaintances that have Lyme, we were expecting this news, but it’s still really hard to prepare for. I think of my worse days thus far and I want to burst into tears thinking about the journey ahead…those will be very difficult days. but, with Lyme, the general consensus on how treatment goes for patients is you get worse before you get better.

 I feel my heart swaying between emotions as I’ve been processing this over the last few weeks. I’m holding onto hope, yet feeling the often indescribable weight of this journey. this is the tension I’ve always felt in really difficult times…and this one is no exception. sure, we are thrilled to have the right diagnosis, as well as the proper treatment and a hope for a better lifestyle. but, having walked through the thick of the past 14 months and only our eyes and hearts knowing what it’s truly felt like to walk through our journey, the weight has not yet been fully lifted. even more patience will be asked of us in the days ahead. as we prayed yesterday on the drive home, we are asking God to continue teaching and molding us in this process, and for strength – for our tattered hearts can often feel weak and worn.

since I know the next two years will be very hard, I find myself in an inner struggle over how to respond to those whose reactions to our news focus only on the good prognosis. I guess I want to say two things. first, thank you for your love and support. we do value your happiness with us over our news of hope. but I also want to ask: please don’t just check out of our story in response to the good prognosis….but rather, would you be willing to also feel the weight with us of what this journey has already been and what this means for the years ahead. this journey is not over, especially considering that the hardest days are still ahead of us and, as I mentioned before, my treatment is only beginning and will last about two years.

we have such a hard time in our culture with sitting with people “in the weeds” and endeavoring to feel the weight of their circumstance or season. a teacher once shared in church how in Jewish culture, sitting Shiva – a seven day period that takes place after the loss of a loved one – requires the visiting friend or family member to remain silent, unless the griever starts the conversation. totally sounds uncomfortable to us, right? we constantly seem to feel the need to fill the silence in hard situations with something, anything, but how is the one who’s suffering left feeling? something for us to consider.

thanks for taking the time to read this, and, in a way, “sitting in the weeds” with us for a few moments. none of us were meant to walk alone and Trev and I are thankful for those who have chosen to walk with us. <3

{{ for those interested in learning more about Lyme disease
(including how to protect yourself) here are a few links: }}

about Lyme disease

top ten tips to prevent Lyme disease

co-infections + Lyme disease

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