A diagnosis and strength, one day at a time
I have been working my way up to writing this post as it’s not been an easy one for me to address. I’m struggling for words, still teetering in and out of a state of denial, and am faithful, yet anxious, for what the future holds.
First off, I want to thank all of you who have been here for my family and I through the trials we have faced these past few years. I feel especially grateful for the support, love and prayers that have grown exponentially since I have gotten more and more sick. I am tremendously grateful for my husband who has embraced me and love me unconditionally as the storm seems to sweep us further away. Lastly, I am thankful for my family. My Mom and Dad who have loved us unconditionally, and have sacrificed so much for us.
I finally have a diagnosis!!
I have Chronic Lyme Disease – a horrible, debilitating infection that cannot be cured, but can be put into remission. God gave us this answer at a time that I could remain strong in the midst of all of the trials that my body has faced, and will face in the future. I have to admit that I have been rather vague in the past with broadly explaining my ongoing struggles, as they are just that…very broad. This disease is the master imitator of all things. I have a 3″ binder of all of the tests that have been done on me, hospitalizations, procedures, surgeries, and the sickness that I’ve dealt with – all pointing to many different diagnoses. What is even more crazy is that this likely has been going on for even longer than I have known…potentially 14+ years! This may date back to my junior year of high school, when some of you may remember that I had a case of Bell’s Palsy which caused temporary facial paralysis!
Since starting our family 8 years ago, my health has been like a roller coaster – a lot of ups and downs – including being diagnosed with an autoimmune disease, called Celiac Disease. I have also had varying health issues, including during my pregnancies. I hemorrhaged after delivering our second and third child. I’ve had blood transfusions, developed uncontrolled hypertension, tachycardia, exhaustion, optic nerve paralysis from a TIA/stroke, and last, but not least, have had neurological issues.
You may be wondering why it’s taken so long to figure this out. I too wonder the same. Medically, I know that this has surfaced in hidden ways for years. In my heart, I know that all things happen in God’s timing. He has used this time to grow my inner strength and protected me for so long- which is a miracle in itself! I believe this is in part because of the support and prayers! I also believe that he has been working in me to prepare me for the battle that comes next. There are a lot of unknowns, but my tests are raging positive. My “littles” (Sydney, 3, and Mason, 19 months) have to be tested for this also. Mason has benign external hydrocephalus, and this could be the answer for the mystery that we have been trying to uncover with him. I ache and feel the deepest anxiety over the fact that I could have passed this along to my babies. Carter is old enough that if he’s not exhibiting symptoms, he should be in the clear – praise God!
There are a lot of differing approaches to treating people with this disease – let alone diagnosing it. The CDC has flawed standards that ignore the majority of people that actually have Lyme Disease and only acknowledge a small sample that have only recently become infected and have tested positive on one, very narrow test. This test is, at best, unreliable in diagnosing Lyme Disease in people that may have had it for a long time, often leading to other diagnoses, such as Fibromyalgia, Multiple Sclerosis and other auto-immune disorders. Through the grace of God, an angel was put in my life who urged me to be expansively tested for this after she too received this difficult diagnosis.
Over the past few days, I have met with a few doctors, spoken with fellow lyme patients, and have begun my research to seek treatment in order to eradicate this active bacterial infection from my body. That process will come with its own set of challenges, starting with finding the right Lyme doctor and treatment plan. Also, my body will endure more pain than I can probably imagine as these toxins are destroyed and released for my body to detox. This article is a pretty great summary of chronic Lyme and what I will face throughout the rest of my life. While the tone is light, the message is loud and clear – Lyme is a constant, uphill battle.
In my research, one thing is clear – this is a huge problem in this country and the right testing is not being done (see this article) to help people get diagnosed! There is a lot of controversy, and in my opinion, corruption of the medical system. Lyme specialists (Lyme Literate Doctors) have long waiting lists and the majority don’t take insurance due to the controversy behind Lyme and because health insurance companies are following the direction of the CDC that Chronic Lyme Disease is not real. I can tell you, it’s real. Once diagnosed, starting treatment NOW is critical; and that means starting antibiotic therapy slowly so that my body doesn’t have a strong herx reaction.
Today, I took my first dose of antibiotics and will continue to increase them over time, and for today I feel confident that my decision is the right one. One of my sisters in Christ inspired my subtitle for this post, and I will end it by saying that my body sometimes struggles to make it through the day, but when I focus on Him and the miracles He has worked just in my life alone, I can focus and have strength, one day at a time.