I am not really certain how it is already the first of July, time continues to run away from us. Between working, keeping my husband a priority, helping Kyra through treatment and taking care of the baby, my memory blends into one giant time fog. Without viewing a calendar, its hard to recall if this is week four or five of the latest trial life has handed us, but I know each day, we all look for the beauty and gratitude to sustain us. The hope that can only be found in Jesus.
As we travel through the extensive healing process and protocol, its important to both Kyra and I to update everyone so people can see, if it works for her, it might work for you or someone you love as well. So, as of my last post, we had determined which parasites we are at war with. Last Friday, Kyra and I headed off to CVS to pick up three antibiotics, her new protocol for the month of July. Kyra had no idea of my secret prayer that somehow, someway, these antibiotics were not going to cost us an arm and a leg. With no health insurance at this time (honestly, most Lyme doctors worth their weight don't take health insurance anyway), and unable to work due to the extreme all over body pain and shakiness in her hands, Rich and I have budgeted $2,000 a month for this care for the next two years, all the while helping Richy and Lauren pull of a glorious wedding this November! Talk about leaning on the faith of God's provision! When it comes to picking up new medications each month, I just told Kyra "Download the Good Rx app", and I prayed for a miracle! Good Rx doesn't help with the holistic supplements she will be sent each month directly from the doctor, but we will use it when we can.
As we began to talk to the kind woman in the pharmacy (I note that she was kind because, is it just me, or is it very difficult to find kind, caring employees anymore?), she said to Kyra "I need a new insurance card". When Kyra told her she doesn't have insurance, she said, "You know which medications you were prescribed right?" I immediately interjected, "We know, it's not a problem" so there would not be a hyper focus on the cost. I already know Kyra feels bad that we are paying for this and there is no reason to add guilt to the list of stressors she already has. She was given hydroxychloroquine, cefdinir, and azithromycin and told to start one every few days. By the grace of God we had that Good Rx app, which, if you haven't heard of it, I highly recommend you download it. I can't wrap my simple mind around how it works and honestly, I do not care. That medication would have been $1,000, but as soon as they scanned Kyra's Good RX app, it went down to $150. Praise God!!!! Financially we also had more good news as, the initial $550 doctors fee turned out to just be an initial fee. All appointments after that are "only" $400. I know that is still a lot, but we will take any reduction at this point and the doctor is so worth it. Also in the budget this past week, a test for mold toxicity. Mold toxicity tends to go hand in hand with Lyme, so the doctor mailed Kyra a test to take and send back. We are awaiting the results of that.
I list all of the costs, not only to praise God for providing, but as another thing that needs to be addressed regarding Lyme Disease. I am normally not a conspiracy theorist, but there is some sort of correlation between this being a government created disease and some insurance companies not covering it. I will talk about this more in future posts. Imagine the hindrance if you do not have the finances to pay for all of this care AND your insurance company doesn't pay for the treatment or you do not even have health insurance. I mention that because I know there are a few people on my friends list who have had or have Lyme Disease and I would be curious to hear other experiences with reference to how care was paid for.
So far Kyra has only been able to start one of the antibiotics due to a drug reactions between the combination of two of the medicines, today we go to pick up a replacement for the one that causes the reaction. This past week she had another terrifying episode of her temperature dropping to 95 degrees combined with extreme weakness. She was basically home alone and her brother and I had to cut short what we were doing so we could run back to their house and make sure she didn't need to be hospitalized. She is experiencing a lot of dizziness, and, though I didn't mention it to her, I noticed on Wednesday when we went shopping she got extremely fatigued and we had to walk a little slower down the aisles. It was very reminiscent of the previous week when she had taken a long walk on the beach with her precious sister-in-law carrying the baby for her, but paid the ultimate price as the exhaustion from that walk left her too tired to stay at the beach and we had to leave early. But she pushes through and spent the week cleaning her house as they will have visitors this coming week.
The dizziness reminded me of yet another time in her youth when I should have known the Lyme was still attacking her body. She was ten years old and we lived in our beloved rental "Barny". Her Daddy was in Iraq for the second time and coming home, so we were about to catch a plane to Northern California where he was being flown to, for a much anticipated family vacation. Always prone to a bit of anxiety (now I know, due to the Lyme Disease), two days before we were leaving, she began to feel extremely dizzy and weak, her temperature was nosediving. Not one to rush to the doctor, ever, I began to become extremely worried and called our dear friends at her pediatricians office. Though I have had a severe skepticism of MD's since my husbands near death experience at the hands of one in Massachusetts, in our new small town in West Virginia at the time, both of our pediatricians went to church with us and were two of the most amazing women we had ever met. So I called them, and off went Kyra and I while her brother went to hang out with a friend.
My sweet doctor friends immediately knew she was dehydrated and tried to find a vein to hook her up to an IV, but they could not find one. As they tried multiple ways of helping my baby, it was clear she was becoming drastically weaker right before our eyes, so they made the decision to transfer her to ICU. Looking back, you know, I don't even know if I informed these ladies that she had ever even had Lyme Disease. Why? Because we had been told she was cured when she was four, so why would it even cross my mind that this could have anything to do with it? How I wish it would have. Our pediatricians were the best of the best, but what we have found out over the past few years is that, due to no fault of their own, most MD's really don't know anything about Lyme Disease and they get no medical training on it in med school. Lyme is not part of a standard blood panel that you would get to see what is wrong. If you want to know about Lyme, you have to learn on your own, much like the Boston Oncologist I mentioned in my previous post.
Once in ICU, she stayed overnight until she was stabilized and then they released her to come home. But now, fresh out of ICU, and with no diagnosis except for dehydration, it was time to drive to Charleston and board the plane. She still felt as though she had been run over by a train, and her anxiety levels were at an all time high, which we now know as a Lyme flair up. But we had to take this trip. We hadn't seen Daddy for nine months! And for months we had been planning our stay in Northern California, followed by a flight to Southern California where we would stay at the military friendly Lawrence Welk Resort and take the kids to Legoland (How funny looking back that we were clueless to the fact that in six short years, we would be living 20 miles from that resort! Had you told me that at the time, I would have called you a flat out liar and out of your skull!!)
As we sat in the tiny boarding area at CRW, she looked at me and said, "Mom, I can't do this". Always one to want my kids to be tough (just ask her about the time her Uncle Frankie accidentally broke her finger playing football with her and her brother and we didn't find out until six months later at her next sports physical!), I was compassionate to a point, but basically gave her a "Buck Up" attitude and said the trip was paid for, and Daddy was waiting for us in San Francisco, we could not disappoint him. I will never forget the look of shear panic on her face when she realized I was going to make her stay locked up on an airplane for over five hours. In my own mind I was envisioning an emergency landing somewhere over the Mid-West due to my poor babies panic attack, but I never would have told her that! Of course she did it, because she's Kyra, and we made it, and, in the end, that vacation ended up being one of our best family memories we have.
It wouldn't be the last time she would have to be tough. I know that her faith plays a huge part in her intense determination, and I do believe her level of determination is extreme. Right now, she is being tough for this little one pictured below, her life, her joy, her baby girl! Many nights her Daddy and I just sit and talk about how remarkable her will to push through as she faces two turbulent issues at the same time, two things a person should never have to experience at the same time, but she just carries on, takes care of her baby, does her protocol, prays and tries to learn. She might stop for a cry, text me a mile long text to vent, or spend an afternoon talking it out with her sister-in-law who is also her best friend, but then she puts her big girl pants on, does the right thing for the sake of doing the right thing and carries on. Short of Jesus Himself, she is the biggest inspiration in my life right now.
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