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Keep your eye on the ball

Published on August 5, 2016August 5, 2016 by Jesus is for the WoundedLeave a comment

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

1 Peter 4:13, glory, Lord, trials, overcomer, trust, endurance, fiery

Missing you terribly

Published on April 14, 2015April 15, 2015 by Jesus is for the WoundedLeave a comment

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

Waiting on the Lord

Published on September 12, 2014 by Jesus is for the Wounded2 Comments

Waiting on the Lord,

Clinging to this keyboard,

Playing the “how long psalm” in my head.

Where does my help come from?

So obvious that it’s Him once again

And yet the troubles trouble on.

“God is not Santa Claus,”

I once wrote a fellow sufferer, or

One who hands us our lottery happiness ticket.

The Lord knows no boundary of time

So our journey must not be measured so

Lest we push ourselves out of His perfect plan.

For if we take the reigns

And steer off course by will

We may never see His glorious promise revealed.

He will never leave us or forsake us.

He is with us now and til the end.

His mercies renew and He graces us with abundantly more.

Humbly shall I remain

Waiting on my Lord with open eyes

For His return in glory: it will be soon.

And on that day I know I will be glad for all.

Just Julie Treatment Update

Published on September 10, 2014 by Jesus is for the Wounded5 Comments

Brief update: I seem to be in what an airline pilot might call a “holding pattern” lately. When I can break through the perpetual feeling of sickness and get myself out of the house, even if it is to our backyard, there’s always a backlash of noxious symptoms. Recently my chiropractor recommended a heavy metals blood test and after a month of getting the paperwork and procedures right we have the results: high potassium and very high mercury. Yipes! So my husband and I are investigating chelation therapy. I have an appointment with a Doctor of Osteopathy who provides chelation and other medical, nutritional interventions. In the meantime I’ll check with my family practice physician and see if there’s enough data to proceed with caution. We will be covering this in prayer. For most folks chelation is a difficult journey. But hey, I’m familiar with that already, eh?

More details: The daily 2 to 5 hour waking seizure attack episodes continue. One day each week the episodes exceed 8 hours on and off during which I am largely bed bound. If I have pushed myself to complete heavy gardening tasks or more than about 2 hours of appointments outside of our home then the episodes can increase to 12 hours. The rest of those days is pretty worthless. I have at least two “worthless” days at home each week anyways, regardless of my activity level. These are days where I pretty much take advantage of the lovely “3 hots and a cot” afforded by our home. I may see you here at the computer and mope through other very sedentary tasks. Dinner may or may not get prepared. Thank goodness for my homemade freezer meals and frozen burritos for Steve on days like these!

The normal sleep-wake cycle remains elusive for me. When I do go to bed around midnight it is usually because Steve has carried me there in the neurological collapse-mode of a seizure attack. This happens twice per week. I’ll pass out at some point thereafter only to awaken in less than 4 hours, usually with another episode of tazoring. Many days the tazoring wakes me up in the middle of the night. Good grief! That’s what happened last night prompting this blog. When I do wake up in the middle of the night I have to find a way to yank myself out of bed or they will continue indefinitely! This also happens twice per week on average. The other nights I endure an episode sometime between sunset and midnight then I am wide awake until 4:00 a.m. or so. If I can wait until I feel sleepy then the episodes falling asleep will usually be shorter and sometimes not at all. I love it when the latter happens! The best schedule for me then is to be up late, go to bed and sleep until noon-ish, endure a shorter waking tazoring then attempt to move forward with the day. I love days when I do not have any appointments that disrupt this schedule!

The only “treatment” I can tolerate at the moment is a strict diet, coconut oil, colon hydrotherapy to detox, and extreme mold avoidance. Occasionally I can take a short walk late in the afternoon or use our elliptical for 5 minutes, usually in the middle of the night before bed. My diet is mold-free, gluten-free, sugar and sweetener-free, dairy-free, and low oxalate. The latter has produced some detox reactions that appear to be beneficial; bone broth is incredibly nurturing to my digestive tract. Most medications, pharm-grade supplements, and typical detox/immunity foods (such as lemon water, probiotics, ground flax seeds or oil) produce convulsions. Not good. This syndrome has a name: Chronic Inflammatory Response Syndrome or Multiple Chemical Sensitivity. The good news is that my gut health is better than it has been in a long time. That tells me that the dietary strategies are working! There are times when I feel more alert and my thinking is clearer. At times my memory is better. To my delight the creative juices are flowing again as reflected in my latest designs at Trinity Jewelry by Design. And sometimes I am even able to make jewelry during the daytime instead of just with the crickets outside the window of my cute little studio area . . .

October 11th will mark the 3 year anniversary of becoming sick. (For more on that story, see the About Julie page.) I’ve been off from work for 2 1/2 years now, the longest since I started working in at the Penny Candy Place as a teenager. No work or disability income is in sight. The Lord has provided for my every need through my gracious husband and His grace. Through it all Steve and I have been challenged to the ends of our human strength through unbelievable trials yet somehow feel closer to each other and to the Lord than ever before. Steve is my hero! We trust in Proverbs 3:5-6, Psalm 41:3, Psalm 71:14, Revelation 21:1-8 and more. The Lord is faithful to His Word: we have seen it, we hope in it, and His living Word carries us through it all. Even in those split seconds when it feels like my heart, my breathing, and my brain waves have ceased to function and I do not know if life will continue for me, I am no longer afraid. That’s how real the hope of heaven, the reality that my eternal life has already begun as a child of the King, the loose grip I have on the things of this earth are to me. Oh Gentle Reader, can you say that too?

So many unknowns fill our days. We can respond with woe and fear or we can respond with FAITH. And our faith is only as strong as that to which we apply it. I hope that you will join me or have put your faith in the omnipotent God over all. Yes, I wrote all.

Nothing less will do when faced with the next, er, bite in the shorts. You know I had to say it didn’t you?! :]

Into the Night

Published on January 26, 2014January 26, 2014 by Jesus is for the WoundedLeave a comment

I am finally awake, stable, and coherent all at the same time! It is now 12:48 a.m. Such is life.

On a good note, I was able to march around outside this evening in my snowshoes for about 30 minutes this evening. The night air felt bitterly cold yet the sky was clear with all of the stars visible in our Midwestern corner of the world. I love seeing our German Shepherd, Elle, jump from one snow drift to the other as she chases after my husband and me. But perhaps my most favorite moment was seeing her waiting for me as she looked into the house from outside on our covered porch. Steve had taken off cross country skiing in the backyard and pond area. She usually follows him closely, often pouncing behind him in his tracks when the snow is deep. Today she knew that I would be headed out with him shortly after he left and there she was: waiting with her big expectant brown eyes. Ah the love of one’s pup!

Sometimes when I am alone it is hard to feel the love that I know exists in my life. When I am the sickest each morning this is especially true. For me it seems that so much of the success of recovering from this time of illness will lie in what I do with the grief of the trauma I have experienced. For over two years now, I have felt traumatized by the wretched seizure attack episodes that wrench my body with pain, headaches, cognitive changes, ringing in my ears, crying, spontaneous vocalizations, and violent seizing. For over two months, the episodes last around four hours total per day with the worst ones occurring in the evening. The sadness can be overwhelming; the disappointment each time they return can be heavily discouraging. Both can lead to a sense of emptiness that is devoid of love, hope, and meaning. At some point I recover enough from an attack to get something to eat or drink. Even eye contact with the lone pet left behind with me when everyone else in my life has gone off to work or some other noble activity can be a mixed blessing: comforting and protective (yes) yet a pittance for more meaningful human contact. By the way, where is God?

Yes, I often long for Jesus with skin on at these times. I am grateful that most recently I have found Him in the caring voice of a friend on the phone and always in the loving embrace of my beloved Steve. Sometimes I miss picking up the phone and calling my mom. This desire to connect with her seems stronger the more the years go by since she passed away nearly seven years ago. I guess it is normal when a person goes through a time of testing or sorrow to desire the comfort and wisdom of a parent no matter what your current age might be. If my mom were still alive today I think she would want me to keep moving, keep going, keep trying despite the setbacks. O.K. mom: will do. For tonight I’m going to call on the One who sees me whether or not my husband is around, the dog is awake, a friend is home to answer the phone, or my self-soothing words in my heart to my deceased mother means anything. I’m going to the throne of grace.

My dear friend mentioned Psalm 91 yesterday. Here are some gems from the Psalm to which those with an anxious heart often turn:

Psalm 91

¹Whoever dwells in the shelter of the Most High will rest in the shadow of the Almighty.²I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”

**************

¹⁴“Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
¹⁵He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
¹⁶With long life I will satisfy him
and show him my salvation.”

From Bibleclassics.com I found this little gem of insight into Psalm 91 that spoke to my heart this night: “Whatever happens, nothing shall hurt the believer; though trouble and affliction befal, it shall come, not for his hurt, but for good, though for the present it be not joyous but grievous. Those who rightly know God, will set their love upon him. They by prayer constantly call upon him. His promise is, that he will in due time deliver the believer out of trouble, and in the mean time be with him in trouble. The Lord will manage all his worldly concerns, and preserve his life on earth, so long as it shall be good for him. For encouragement in this he looks unto Jesus.”

Yes, thank you Matthew Henry. I will hold onto the psalmist’s words of comfort inspired by my Lord who sees me on my bed of sickness, who promises He will never leave me or forsake me. And if it be His will, He will deliver me from my suffering. Into this night and for the rest of my nights I will ultimately rest in the loving arms of the one who is showing me His goodness despite the darkness. No matter what the next day might bring I will trust You. No matter what the next hour may bring I will wait on You.

No matter what you too may endure Gentle Reader, I hope that you will be encouraged that your sadness or disappointment does not go unnoticed by the Lord who loves you too. He is worthy of our faith. And I know if we both but believe in Him, we will be blessed in some special way that will transcend our nights, our days. In the meantime He will not frustrate us beyond our ability to cope and will provide a way out when overwrought with temptation. These are promises in His Word and truths by which we can endure all things. We will never be alone. His eyes will always be smiling towards us through the looking glass of life. JJ