Friday my Doctor recommended some new supplements to further my care and seemed pleased at some progress revealed in retesting of my gut health. But neither product is available right now; instead I had to crash in bed that night and most of Saturday.
Yesterday I thought I would work on trimming a sterile plum tree in our backyard that is riddled with black knot disease. We are trying to save it for a few more years of it’s flowering glory in the Spring and rich wine-colored leaves in the Summer. It was not to be so today.
Tomorrow I hope that my trial of THC-free hemp oil will resume with receipt of a shipment in the mail. I didn’t realize when I started it recently, how much I would need nor the extra timing needed for shipments across our country. This could help resolve the seizure attacks as soon as this week . . . if I get the dosing right . . . and if the next shipment arrives shortly thereafter. But there was a fire in a warehouse between here and there, threatening my continuity of care. Maybe I will have enough? Maybe not? Lord knows that one day we will have figured this all out!
When today came I thought I might clean our bathrooms and floors then complete an infrared sauna treatment before heading outside. Instead I was sick. Only the sauna treatment happened.
Then later and just when it looked like the core of my treatment plan was coming together, another infection sent me and my beloved to the walk-in clinic of our local hospital. Geez oh man. Steve offered to take me out to dinner last night but I could not make it. I was hoping to take a walk with him and the pup in the sunny, 50-degree weather. Nope, not today.
I cried a lot before proceeding with what we did need to take care of me today. Life sure is funny. Perhaps some medical appointments this coming week will clarify what I should do next to get well in addition to responding to urgent changes that seem to come along every few days. And maybe someday, one day, we will make plans for something fun and they will really happen!
In the meantime, date nights will be at a clinic or pharmacy at Walgreens or driving to the nearest metropolis for a fancy NeuroQuant brain scan. At least in the case of the latter, we got to see a dear friend, Mary, for a quick lunch at Freshii’s in Chicago’s Loop. Now that’s making the most of a day, eh?
Straining to trust in my Lord this night. Choosing to trust in His Word and promise to carry me through it all no matter what may be one day for:
There is a time for everything, and a season for every activity under the heavens:
2 a time to be born and a time to die, a time to plant and a time to uproot, 3 a time to kill and a time to heal, a time to tear down and a time to build, 4 a time to weep and a time to laugh, a time to mourn and a time to dance, 5 a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing, 6 a time to search and a time to give up, a time to keep and a time to throw away, 7 a time to tear and a time to mend, a time to be silent and a time to speak, 8 a time to love and a time to hate, a time for war and a time for peace.
9 What do workers gain from their toil?10 I have seen the burden God has laid on the human race.11 He has made everything beautiful in its time. Ecclesiastes 3
I remember hearing this advice when being introduced to softball as a girl. It didn’t help my game much then but it does now!
Navigating the healthcare system when battling a serious illness requires patience, persistence, and push. (Now that motto DID help me when swimming my 1/2 miler!) You are your own case manager, not your Doctor. Getting this fact into perspective quickly was required for me to endure nearly five years of a long and winding road that first appeared to lead to no where. I am still sick but some things are markedly better. More about that fills the pages of this blog. Now back to the brain dump that comprises the topic at hand . . .
Getting labs written and drawn for treatment coordinated between 3 healthcare providers and their respective offices has required hours of work this past week. At this time we are good to go for everything to come together tomorrow. It is no small matter to have to drive to my primary Doctor’s medical office to obtain the corrected piece of paper then scan and email it to the office of my home infusion nurse. (Two phone calls confirmed that an incomplete copy was faxed to her agency 2 days ago.) These results will be valuable for my appointment with the naturopath in about 3 weeks via Skype. Gotter done.
Researching a new theory about a latent infection that may be contributing to this illness has become a new project. I will allow several weeks for all parties to review my report and, if appropriate, order, interpret, and advise on the laboratory testing that would follow. This process should take over a month. Meanwhile the wretched illness continues. Gotter started.
Adjustments in my treatment protocol above the core prescriptions, occur on nearly a daily basis led by what I can tolerate at any given time. Detox remedies get rotated and new treatments that are prescribed take weeks to fine tune, if tolerated at all. Beginning a new treatment often takes several weeks by the time I find it either online, order it from one of 3 compounding pharmacies (locally and across the country), correct mistakes made about 20% of the time, and find the best timing to work with the rest of my treatment plan. Prayer helps a lot. Just started something that I ordered almost 3 weeks ago. Parts 2 and 3 are still pending. Oh well. Gotter in.
Not all the testing that is recommended needs to be done RIGHT NOW. After hearing back rather quickly from my naturopath about my concern that I might be dealing with a latent toxoplasmosis infection, he recommended 2 new lab tests. One would cost over $900 out of pocket and the other would likely be covered by insurance; both cover important yet different aspects of my care. But hey, if we figure out what infection is causing my symptoms and kill it then I won’t need to know how it is affecting trafficking of various neurotransmitters. The problem will already be solved! I made the decision; the next steps are in play including copying my primary Doctor on everything. (His email system failed so I drove my report to the office today.) Getting her moving forward.
Behind the scenes, the ordering, billing, organizing, preparing, and administration of IV infusions-with-related-supplies continues. I had a question after reviewing the mighty bill from my home infusion company. I thought they may have over-billed me 15.75 hours at the cost of $945 (which equals the cost of 2 weeks of nursing care!). They billed me one way at the Start of Care and another way the subsequent weeks. Over the course of 2 weeks of various chats with my home infusion nurse and 3 staff at the agency, it turns out that we both misinterpreted our initial agreement: the written contracts have blank spaces. They have chosen to bill me at a lesser rate given that their billing methods changed in January of this year and prior to my Start of Care with them. The savings to me and my husband will be substantial. Gotter blessing!
Sometimes supplies get sent with errors. This happened twice this past week. Gratefully I have come to trust the overall process and not worry about some delays too much. In one example, it actually hurt less to use a smaller gauge Huber needle to access my port when it was sent by accident. The infusion did not take that much longer so my nurse and I agreed to continue using the one sent by mistake. We tried this in the beginning and did not have this good of a result. Flash forward 3 months. Yellow is my new color instead of white or red! Gotter figured out!
So who is minding the hen house? All of these exhausting details? This serious illness I am battling includes chronic Lyme disease but who is tracking my progress after 6 months of IV infusions of antibiotics? The last appointment with my LLMD focused on other labs instead of ones related to the co-infections of Lyme disease. Geez oh man! I should be ready to focus on the co-infections Lyme by now since there is still one major problem to solve: the convulsive episodes at night and in the morning have not stopped yet. WHO CARES ABOUT THE OTHER LABS? The LLMD says that the updated and gold standard, Igenex lab results have not come into their office yet. Alright so we wait. Then as I was checking out with the nurse after my appointment my LLMD handed me a piece of paper upon which was written the name and brand name of an herbal tincture to add next for Babesia (a co-infection). He says it will help with the symptom of night sweats and yes he put it on my clinical report sometime after he had left the room. I guess I will figure out where to order it from, the dosing, and the schedule. No problemmo. Got this one in the bag so to speak like so many others.
Surely I am a “problem child” of sorts for some of my healthcare practitioners. My condition, orders, and treatment are not written verbatim in any text book. Is that not the joy and challenge of practicing medicine? Especially when your client is paying you CASH? An informed patient partnering in her care is your best patient, right? I try to be nice about everything and express gratitude for their care. However it is with respect that I say in my heart that dear practitioner, ultimately “you are not the one in charge of my care.” My Jesus is! And under His guidance, I am! My husband and spiritual leader has much to say in this journey as well! We are in this together for better, for worse right? Indeed!
Know what I mean Gentle Reader? Have you ever gotten a little crazy managing the details of your care or the care of a loved one? Even the insurance company who holds the purse strings of coverage for services rendered are not in charge of what happens to each of us. Thank goodness as I have to deal with 2 of them! So for those in Christ Jesus, in the end finding the best care, the best outcomes require us keeping our eye on the ball as unto the Lord and His will for our lives.
Perhaps that bears repeating, IMHO:
The best care requires us keeping our eye on the ball as unto the Lord and His will for our lives.
Maybe a new title is in order here: Keep your eye on the Lord. Always. As it says in Psalm 55:22:
Cast your cares on the LORD and he will sustain you; he will never let the righteous be shaken.
I believe it is the Lord who gave me the ability to search, to research, to write, to endure, to overcome the trials he has ordained in my life for His glory, for my highest good. Lord willing together we are getting it done well. What do you think? JJ
There’s a Barbara Streisand song with lyrics that go something like this:
If we had the chance to do it all over again, tell me would we . . .
Could we . . .
The way we were.
It’s not that I would like to go back to my former self or anything like that. I have had chronic pain for most of my life and lived with pain inside my heart for longer than that. Many of my own mistakes were downright damaging. Still other experiences damaged me and it would take until very recently to be free of their dark spiritual underpinnings. The freedom I experience in today from the drama of yesterday’s trauma was worth the good and bad spent getting here. But there is one part I am not sure what to do with . . .
I was never really physically fit and virtually always held a critical eye toward my physique even when at my ideal body weight. All that did not seem to matter to the stream of the male persuasion that came my way, ever since I was twenty years old. (Not sure what they were waiting for before that!) I always rode my bike as a kid EVERYWHERE. I did not think of it as exercise at the time, just a means to get me to the home of a friend. Several times in college I tried running around the sidewalks of the sprawling campus. “Library Hill” was a killer! Maybe I should say that I ran on most paths except the 27 or so degree incline of Library Hill! Carrying a full load of books up and downhill to class or to study late into the evening at the library should have earned me an extra degree in something or another!
What I miss most is the innocence of moving without thinking about it. Every day lately brings stark reminders of the convulsions that have returned. Every day brings a new version of shaking that hurts my neck the most and leaves some version of a headache behind. Every day the hope of exercising for the enjoyment of it alludes me only because I cannot; I actually had grown to like high intensity workouts before I got sick 3 1/2 years ago. Even with chronic pain I worked out with weights, unloaded my truck bed filled with sod/dirt/mulch, and kayaked for a couple of hours each week. I loved being strong.
Today I miss being strong. The trauma of seizures and convulsions have taken their toll. The sickness after an episode usually lingers for hours, days. I never really know for sure when the next episode is coming although the bedtime and waking-up patterns have been fairly consistent throughout this ordeal. Somehow despite my weakness, I HAVE NOT GIVEN UP for more than a day. Yesterday Steve and I went for a walk with our pup, Elle though most of the time the walking is through the halls of our home or a medical facility . . . or this past Saturday’s date night to the grocery store. It’s something, eh?
O.K. so I am bummed out. I have missed writing and did not blog so as not to bum you out, Gentle Reader, in reporting that the surgery did not stop the episodes as I had hoped. There are tiny improvements and for these I am grateful. I think I’ll need a little longer to recover and clear the anesthesia completely out of my system. In desperation I went on a water fast for 24-hours last week. It was awful! Amazingly I did not have seizures until the 24th hour! I believe the Lord gave me the wisdom through it all to start a ketogenic diet so new research and a new direction began the next day.
A ketogenic diet is a high fat diet where the fat becomes fuel for the body instead of carbohydrates. The version for seizure control (generally used for children) is unlike the keto diet for weight loss in that fats are consumed more than protein “macros.” Grams of carbs are the tiniest portion of the three. The increase in ketones are measured in either the urine or blood and thought to be the mechanism that brings some level of seizure control in 25-50 percent of children. In children the diet begins after a 24-48 hour fast in a hospital. Hmmm. My great Physician led me here after my own fasting experience too. So with the MyFitnessPal nutrition app in-hand, I am moving towards the ideal ratios of fats, proteins, and carbohydrates. Good news: that means lots of bacon! And at least I am off the pureed diet now!
The way we were. Can it be that it was all so simple then? Or has time re-written every line? If we had the chance to do it all over again, tell me, would we? Could we?
Perhaps the real longing requires me to not look back at all. Then what is it Lord? Fill this emptiness, please. Ease this hurting. Thank you for new tracks to run on, so to speak. I still need you desperately to guide me. I realize that I may not be alone in this desire you know. Please comfort the Gentle Readers out there who need you too. JJ