In one of my dad’s last sermons he said, “anger and sorrow, joy and hope, can be intermingled.” These are words I have clung to, desperately at times, easily at times, but forever I have held them tight. We have been on a three year journey with Johnny’s health. It came almost immediately following a seven year journey with my chronic illness and when Johnny’s health issues began I don’t think either of us had any idea what we were headed into. I believe that was the grace of God. What started as occasional and mild symptoms that seemed like exhaustion from parenting little ones, or possible burn out from being a full time caregiver to his chronically ill wife, symptoms we assumed would pass with time, rest, more vegetables, an earlier bedtime, has turned into much more.
When you are dealing with a chronic illness, often the severity of it is lost in the gradual worsening of symptoms. If one day you are running a marathon and the next day you can scarcely drag yourself to the bathroom, that would be alarming indeed. But when it takes weeks, months, even years for your illness to progress it can somehow become terribly normal. Slowly energy fades, more days are spent in bed than out of bed, symptoms increase and you adjust to a “new normal” that tricks you into thinking this is just your life now. You manage symptoms instead of searching for answers. You make it to bedtime and then prepare to do it all again tomorrow. Survival mode isn’t meant to be permanent but chronic illness makes one forget that.
For the past three years I have slowly watched my husband’s heath deteriorate. Slowly, stealthily, so gradually that I have to fight to remember that this is not who he is and that when healthy he is energetic and vibrant and full of life. He is also the most generous, servant hearted, loving, funny man I know. He is still all of those things even in his illness, but so much of his joy has been stolen.
Over the past three years we have seen countless doctors. Read endless blogs and articles. Searching for what we could be facing. Johnny has swallowed thousands of pills and supplements. We have tried medication. We have sought out experts of every kind, Medical Doctors, alternative health care providers and more. Each had a different answer for us, a new treatment plan each time, some threw their hands up in defeat, and some tried to tell him it was all in his head and he should learn to manage his stress.
Hope is difficult to cling to when answers don’t come.
Doubt creeps in when hope slips away.
Yesterday, after a particularly disappointing month with what we thought were answers and then they turned out to not be answers after all, we decided to visit a doctor a few hours away who specializes in complicated chronic illness cases. Johnny has spent the vast majority of his time in bed since New Years Eve and enough was enough. We didn’t have the money, or hope, we needed, but what else could we do? Desperate times and all that.
Yesterday everything changed.
Yesterday we got answers and a lot more questions.
Yesterday we were handed a true diagnosis.
For the chronically ill patient, as hard as diagnosis day can be, it is also a celebration, a milestone, a turning point. It means the enemy has a name, the fight has a direction, and the suffering might just possibly become healing. When you’re handed a laundry list of health issues you can formulate a plan and find purpose in your days. No more waiting. It’s time for battle.
Yesterday we were given the following diagnoses for Johnny:
* Active epstein barr virus (this one we did already know about, but it was a confirmation)
* Active HHV 6 (a virus almost 100% of people acquire as a child and then it remains in the body, dormant, but can reactivate later in life and cause a myriad of issues)
* Parasites (which I literally saw with my own eyes in his blood under a microscope. Very disturbing and also a lot like 7th grade science class.)
* Autoimmune dysfunction
* Chronic Lyme Disease as well as FIVE other tick borne infections (ticks carry multiple types of infections and most Lyme Disease patients are infected with several of these tick borne co infections.)
When I said it was laundry list, obviously I meant it.
We knew many of these things were possibilities, but to type them out and look at the list is overwhelming to say the least. We are concerned about and addressing everything, but are most concerned about the Chronic Lyme Disease diagnosis. We have experienced the impact of Chronic Lyme on many people we love and care about, most notably with our beloved Burd family and we know this is not a disease to take lightly. We are prepared to fight hard and do have access to many different treatment options for the Lyme, co infections, as well as the other diagnoses.
While right now we are not looking for further treatment recommendations, we are asking for your love and prayers as we know this is not the end of the journey but the beginning of perhaps the most trying part of the process.
Lyme disease is difficult to treat, and because we believe Johnny was likely infected during our last All Access tour on Long Island over three years ago (as that is when his symptoms began) he has been infected for a while and we do not know exactly how far his illness has progressed. We have been asked to do further testing to identify more of that information. We are also exploring the options we have with a few different doctors, but we are grateful that there are Lyme literate doctors within driving distance of us, as many Lyme patients have to travel great distances to find a doctor who can understand and treat their disease.
We know the power of prayer, we know that our God can heal whether through miracles or treatment, and we believe that Johnny will be fully restored so that he can enjoy this crazy beautiful life we’ve been given in a way that he hasn’t been able to for the last several years. Would you join us in praying? We are hopeful but weary. The words of my dad’s sermon are ringing in my ears. I’m angry and I’m sad, but I will not let go of the hope and the joy that comes even during trials. And I will fight with every single ounce of my strength to get my husband his life back.
We are so grateful for our people. For our tribe. For our ministry and leadership who are so gracious and understanding and patient with us as Johnny works hard when able but often a half day of work knocks the wind out of him for the rest of the day. Or week. We are so lucky to have friends and family who would do anything for us. We feel your prayers, we have this whole time. We are sorry we haven’t shared more along the way. It is difficult to know how and what to share when you yourself don’t understand what is happening. But now that we have a set of diagnoses, and are working towards a treatment plan, we will keep you updated as much as we are able. Thank you for your grace with us and for believing with us for health. I have claimed and prayed over 2018 as our year of THRIVING. I still believe it is possible. And would love for you to pray that word over our family in faith.
Thank you from the bottom of our hearts. We love you all deeply. We need you desperately. And our thankfulness for you is beyond words I can find. And we all know I’m hardly ever left speechless.
Kelsey for all of the Koslowskis