Letting go and trusting in Him

Well, in a nutshell, a lot has happened since I last wrote. I sort of suck at getting my thoughts out as they come… I often think of the notes I should be making to write about. When the time comes that I want to write, I struggle with where to start, or I don’t feel well and put it off. I find writing therapeutic and hope that my writing will help others, so I’m going to try to stop putting so much pressure on my writing and just simply write to share my heart (and then AJ will go through and fix my typos – and add little funny things like this).

I started this post in the air on August 25 – somewhere between Baltimore and Detroit – and it’s taken me a bit to be able to come back to it and process everything. I was traveling back from a visit to the Jemsek Specialty Clinic where my Mom and I spent several hours exploring a different approach to treatment. Before I dive too deep into that I have to share a pretty big milestone in our lives.

Just a few weeks ago AJ and I celebrated our 10th year of marriage! This January will be 14 years for us, if we include the years we dated!! We have spent nearly half of our lives together and, wow, has it been quite a roller coaster!! These years have included 3 moves, 3 kids, several job changes, and more obstacles than either one of us can keep count of. I feel like each bump in the road has brought us closer to one another and has forced us to seek God in all things. I hope that the years ahead bring us more fun roller coasters (hopefully smaller, though) and that the painful memories of struggles these past 10 years will continue to influence our strength and love for one another.

Speaking of strength… My hubby is one tough cookie. In true Teachout fashion, nothing goes according to plan. As I mentioned, my Mom traveled with me to D.C. instead of AJ. Praise God he was not with me and was home to be with our oldest, whom he rushed to the hospital in the wee hours of the same morning that I had to fly. Carter had been complaining of abdominal pain and it is uncharacteristic of Carter to complain of pain. Sure enough, as my Mom and I waited to board our flight out of Detroit, we got the news that Carter would have to have an appendectomy. At this point I sort of expect these wild things to happen, but it still doesn’t make it easier to process! My heart ached to be leaving my sweet boy, but I knew that AJ was right when he said that I had no choice, because this appointment couldn’t be rescheduled for months. To be honest, Carter was in better hands with AJ, since he’s always been so amazing with my surgeries and he is (usually) calm during such storms. I prayed with Carter via FaceTime at the gate and knew that I couldn’t be in two places at once, but that God would be! I still can’t believe I got on the plane and felt peace. Once again, we have been surrounded by the love and help of our friends, family, prayer warriors, and an AMAZING pastor who stayed by my boys’ sides all day and into the evening, until Carter was in recovery! Who does that? Pastor Tom does! What a memory for Carter to have such strength and love poured into him during a time that he was fearful and in pain! I am so grateful for the gift of time you gave my boys- thanks again Pastor Tom! Carter has recovered slowly, but steadily, from the appendectomy. He had some additional complications and the poor kiddo has been through a lot, but hopefully we won’t have any more complications or setbacks from this mini roller coaster.

Before I get back to the update on our trip, I want to share some good news. Sydney has been off all meds for 5 weeks and is hopefully in remission. She had a bit of an advantage though, as she was on some heavy-duty antibiotics for unidentified issues from an early age and I think that has helped her to progress so quickly. AJ finished his protocol and has been off meds for two weeks now and is also doing well. 2 out of 5 is amazing progress! Carter and Mason still have a way to go.

Our travel was eventful and gave us the full experience of public transportation including being ripped off for our $20 subway fare! I admit I was insane and stubborn thinking I could travel alone in my current state of health and I needed my Mom’s shoulder to cry on at least three or four times! My appointment was thorough, went well, and provided a very different path to treating than the one I have been on. It was good to hear they believe I’ve had some good die-off of Lyme, but I’m not sure how accurate that is as my recent labs do not indicate any improvement whatsoever! Basically, my lovely co-infections need to be treated more heavily in combination with the Lyme in order to make any substantial improvements. I really liked the staff at the Jemsek Specialty Clinic and the treatment concept makes sense to me. I believe in their protocol and firmly agree with their recommendation to focus on stabilization before beginning their aggressive treatment. Getting my pain and sleep under control, in addition to another infection that was identified in the past few weeks, are critical before we can treat effectively and my body can handle the bacterial die-off of treating with multiple IV antibiotics at once. The approach they have presented includes pulse IV therapy (3 days a week of antibiotics, lactated ringers and heavy detox on the other 4 days, and one week off each month). The goal is to teach my immune system to strengthen itself and fight for me, not against me. This treatment comes with a big price tag, travel back and forth, and the same goal of remission. While the treatment makes sense to me, I left the clinic feeling discouraged by its expensive price tag and wondering if that was God’s way of closing the door on this path. My Mom said to me that day, that no matter what we decided to do, I needed to have complete faith in order to move forward and all I could articulate was my confusion and that the faith I have is in my Father (sorry Ricky, not you. The other one). I once again needed to be still and wait for His direction. After days of praying for discernment and for God to make it abundantly clear which path I should take, all I could hear was walk by faith, not by sight. Since I was first diagnosed, I really have tried to limit myself from seeking advice from others about treatment. This is due primarily to the controversy of this disease and the corruption surrounding it, but this time, I felt that I needed to seek input from a few medical minds, as well as our aforementioned Pastor.

The input I received from each was all very similar and each person challenged me on the real reasons I was feeling uneasy. While I was trying to figure out where the devil was in all of this, Pastor Tom suggested that I look at where God’s hand is in all of this instead. And so I did. God has taken me out of a place of discomfort and concern and placed me with one of the top physicians treating Lyme in the country. I was constantly being introduced to people who told me about this doctor and had many other “coincidental” signs that led me to consider Dr. Jemsek. Anyone who knows me well, knows that I don’t believe in coincidences. I kept hearing that I “am so complex and so complicated” because of all of the co-infections I have (not including the new, additional infection on top of all of this) and that was making me uneasy and causing me to question my treatment. I even received a letter in the mail from someone I don’t even know who treated with this doctor. Then, after many months of treating locally, and having some of my heart symptoms flare again, I was finally accepted to be seen at this clinic in late August.

If it hadn’t been for the monetary sticker shock, I don’t think I would have been in such turmoil over all of this. At the end of the day I could end up spending just as much money, if not more, and taking more time to get better if I continued treating here. So, this may be the ultimate test of faith, because we have decided to fully surrender this to God and move forward with this treatment protocol.

We are working on getting this new infection under control (I feel like I should start naming these things), stabilizing the limbic seizures I am having, and addressing my lack-of-sleep issues. I have begun an oral antibiotic protocol that they have tailored for me and so far, I am doing ok with those. I have struggled with the neuro/anti-seizure meds and am not sure I will be able to work through the side-effects of them, because my stomach can’t seem to handle this particular medicine and it’s also making my vision so blurry that I couldn’t even see my phone the other night, which AJ might say is God telling me to put my phone away. So, I’ve backed down on the dosing of that specific med and will see how I do at a lower dose. I also need to add a number of supplements to support my system and aid in detoxing. I have a few weeks to get all of that on board and will return to D.C. for my first infusion appointment on October 1st. The clinic is predicting that I will need 12-15 months of treatment, inclusive of 7-9 months of IV treatment, and then I will be able to transition to only oral antibiotics with the goal of getting down to a maintenance dose shortly after.

So, I am beginning this walk in faith, not by sight. Not by thinking about the tough road that likely lies ahead, but by counting down the IV bags and setting my sights on short- and long-term goals about how I feel – optimistic and FAITHFUL. Faithful in the treatment plan and how it will help put this terrible disease into remission, making how I feel today a distant memory and making how I want to feel, my reality.


Working my way back (part 3 of 3)

Never Give UpI am now 9 months into treatment, and am sad to say that I am not healed and not better. However, I am getting better at hiding my pain, living a lie and saying that I am “ok,” all while holding back my tears. Physically, I hurt in ways that I cannot even begin to describe! While some days are better than others, my headaches, cramps, body aches, and fatigue are the worst they have ever been. I feel as though lightening shoots through my central nervous system with even the littlest amount of stress. My blood pressure has gotten better, which is a huge improvement, which I am so thankful for! My tachycardia is off-the-charts terrible right now. I lie awake some nights feeling like I have an elephant on my chest and my heart rate can be as high as 150-160. It has recently started plummeting from that extreme high to an extreme low of 50. It is difficult to breathe, likely due to one of the co-infections that I have, called Babesia. I can’t regulate my body temperature; it could be 90 degrees and I am still shivering. I sleep with ice packs on various parts of my body most of the time. I have four identified co-infections in addition to Lyme and each of those adds more complications and makes it more difficult to treat. I’ve spent days and weeks in bed at times. I’ve had to go down the stairs on my bottom some days. I have to limit my driving and cannot drive at night, because my field vision is terrible and my peripheral vision in my right eye is gone! I have new pain that I didn’t have before and some days, I’m not sure if treating is easier than living with the disease! I do know that I don’t have a choice if I want to fight to live.

People often question me as to why I haven’t gotten much better and need so many medicines, or why I look “ok” sometimes. I’m not one to admit or show my weakness, so this has been a daily internal battle. I push myself way past my limits and sometimes the smallest of tasks have me in so much pain that I am fighting back tears even trying to lift one of my littles. I have been prayed over and hear prayers for healing. I feel the power of prayer in a way I’ve never experienced. I pray for complete restoration for my three kiddos, my husband, and myself. However, I believe there is a reason my family has been given this challenge. I also believe that I have been healed – in a spiritual sense. I may never get better, but that doesn’t change who I am or make me less of a person, and especially not less of a Christian.

I literally feel like I am dying inside, and I am, but no one fully understands, unless they have this too. The severity of the disease goes unrecognized and even the closest of family and friends can’t begin to grasp how horrific this is. I am not one to just sit and let something define me or take me down without a fight. So, I push forward. Pushing forward is probably the best thing that I have done emotionally, yet the worst thing for me physically. I know that this is a marathon and that the ups and downs are part of treating this disease. The reality is that most people who have late stage lyme and co-infections are in treatment for years and are not cured, but can be put into remission. The infections attack each person differently, the bacteria are intracellular and can’t be easily detected or penetrated like a normal bacteria. I am learning that genetics play a huge factor in all of this. These suckers replicate on a cycle. The die-off of them can make you even more sick, and if you are not properly detoxing, they reactivate.

To answer the questions about why there is no end in sight, all I can say is that, as anyone with Lyme knows, treating is like playing a game of whack-a-mole. When you begin to treat one thing, more things pop up. While this has been true for me, it has also been a comedy of errors and mistakes by our medical community.

I had a PICC line for many months and then in May had to have that removed and had a port surgically implanted in my chest. My PICC was clotting and becoming sluggish. So, the plan was that when the port went in, a few days later the PICC would come out. Nothing goes according to plan with me, so this was not the case. A mediport is a more long-term solution, and it has been much easier to tolerate with the exception of the complications that came from that surgery. The surgeon performing the procedure punctured my lung and I have been dealing with the repercussions of a blunt trauma pneumothorax and a lung that does not fully inflate ever since! My lung is still not fully healed and such carelessness is hard to accept. The care I received in the hospital overnight was terrible because the medical staff doesn’t understand Lyme in it’s true form. As you can imagine, I was not happy! However, if I did not need to stay for observation overnight, I would not have met a nurse who herself has been dealing with Lyme, didn’t have a Lyme literate specialist, and was struggling to keep it together. I know we met for a reason! It’s interesting to see how a horrible situation and massive mistake led me to meeting yet another person that needed help and needed to talk to someone about Lyme Disease.

You see, doctors cannot treat Lyme effectively through insurance because the CDC guidelines are based on the guidance of the Infectious Disease Society’s absurd thought that antibiotics do not help with Chronic Lyme, let alone even acknowledge the diagnosis of Chronic Lyme. Subscribe to the blog if you want to hear my thoughts in a future post, because that is a whole different can of worms!

I continue to be blessed with a purpose to serve my Father and advocate for others by having this disease. I may live with this until my time here on earth is over, but I know that He has a plan and that He is bigger than anything that my body is fighting!

Thank you to all who have liked my page and are reading. I hope that you keep sharing this site and joining me on the mission to raise awareness, fight for the truth to be heard, and provide equal treatment for all. No matter how dark the days may be, this is my life and it is both crazy and beautiful!

Image source: https://www.flickr.com/photos/jayroeder/6708556981

Working my way back (part 2 of 3)

You may recall in one of my first blog posts, Giving Thanks In the Midst of Trials, I promised to work my way backwards with our story, as it could take me a million posts to properly share how complex our journey has been. I am working on that and continue to pray for God to help me to share my story, not for my sake, but to help others! Since my diagnosis, I have regularly been connected to people with Lyme; these people are also searching for a diagnosis or treatment options. My friends, as well as total strangers, have continually told me that I need to be writing about my story, my treatment, and my faith! I met several people in one week at my parent’s home in Florida – living in the same subdivision who all had Lyme or had a close family member with Lyme! I have met people on planes, at doctors’ offices, and church parking lots; I meet people everywhere I go that have been affected by Lyme, or who are seeking answers of their own. I have had people in the gluten free aisle at the grocery store ask me which brand is best as they are trying to go gluten free after having recently been diagnosed with Lyme! There are so many people suffering. I am not afraid to say that this is an epidemic, and it is much bigger than AIDS and Cancer!!! Some experts have even gone as far as saying that this is a plague.

Throughout all of the people I have been introduced to or have randomly come into contact with, I have come to realize I am now being used to connect others to answers of their own. My communication skills, while significantly altered at this point and preventing me from my professional calling, are being put to use to remember details about the disease and explain treatments to people that are struggling to wrap their arms around it. It’s amazing, because I can’t remember how to get to my friends houses some days, but I can tell you names of medications, why the combinations seem to work, why one shouldn’t be combined with another, etc. My husband hates when I say this, but I feel like I have an unofficial medical degree. Sadly, you kind of have to in order to be able to understand this gray area of science and to navigate the unchartered, and individualized waters of this disease, as it stealthy attacks each person differently.

I firmly believe that I am being used in this way as a direct answer to many prayers and questions. When I begin to think of the answered prayers, I see the connections pretty clearly – even for my clouded mind. I have prayed for medical discernment since I first received my test results to better understand this disease. I have prayed for understanding of the medical jargon, the complexities of the disease, inclusive of the unnecessary controversy of the disease, as well as the medications and treatment avenues. I continue to question and ask God why there is so much unknown, why it’s so complex, why the methods for testing have failed so many, why, why why?

Through my interactions and late-night research, I have found many great resources, and while I don’t have answers or know how I will survive this, I do know that that through Him I have hope! I have been able to understand the corruptive behaviors that follow this disease and non-sense that has been taught to our medical community, which will never make sense to me and I will never accept, but I can rise above it – because of His grace!

So, for now I will push through the pain, the fog, the doubters and the mountain of questions and follow His calling. I will fight for fair treatment and a cure by sharing my story and continuing to educate and advocate to anyone that will listen – and even those that won’t.

In the next post, I will share an update on my 9+ months of treatment and then work my way back to tell the story of my family and their struggles with this disease too.

Working my way back (part 1 of 3)

In life we are faced with so many trials. For our family, health trials seem to keep surfacing- either replacing a prior one or adding on to the pile. I say that purely as a fact and not to draw attention to the challenges. When I first thought about starting a blog, I had so many ideas swirling around in my head and none of them were about Lyme, my health, or my faith. Neurologically, I couldn’t connect my thoughts and couldn’t find a way to work through the barriers in my brain to find the words to write about any of the topics I had been contemplating. Keep in mind that writing about my life with Lyme wasn’t on the radar, because I didn’t know I had Lyme!

I finally got the courage to start writing at a time that felt like a roller coaster full of emotional challenges. I thought it would be a good outlet for me. I thought I would have a little fun sharing some of our memories and traditions – acting as a distraction to my diminishing health. I thought I would use it to help me escape from the hell I have been living.

A huge part of my job involved writing and communicating, so it should have been second nature. I had spent my days at work coaching others on their writing and speaking skills as we perfected our sales plans and strategies. Yet, here I was/am with such brain fog that I can barely write an email. This was what I loved to do, but I was having such a hard time doing it. I couldn’t concentrate long enough to watch a TV show or read a book. My ability to hold an intellectual conversation had become increasingly more difficult – it was so frustrating that something that I used to do so easily had become such a challenge. Friends started to notice it more and more. I would get in the car and forget where I was going and/or how to get there. I have lived with headaches for years and they were becoming more frequent and more debilitating. I was spending more and more nights waking up drenched in sweat and shivering… I would spend hours in and out of the shower, laying on the cold tile of our bathroom floor, waking my husband with my sobbing pain and need for help to change our now-soaked bedding. Some days I spent lying in my bed staring at the ceiling in pain. Most nights I spent awake due to the never-ending insomnia and racing heart. While I felt ready to start writing a blog, my body said otherwise. Writing for fun was not in the cards! It still isn’t, but my perspective changed once I received my diagnosis and started treatment. Now, I’m writing with a mission – and with the help of my husband – to share the story of our crazy, beautiful life.

Thankful for answers

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!!