Lyme – Page 12 – Jesus is for the Wounded

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

What could be better than that?

Published on June 27, 2016June 27, 2016 by Jesus is for the WoundedLeave a comment

Tonight on Facebook I got a real education.

I learned that naturopathic doctors are getting murdered by the pharmaceutical giants and that chemotherapy never works. Obamacare may be exposed for what it really is and I can sign a petition with a few strokes and clicks to make everything all right again.

I learned that the media says that Clinton is leading Trump in (crafted?) “polls” and that extremist demonstrators stabbed a bunch of people while I baked cookies on a beautiful night.

I learned that all I have to do to clean my colon is to drink a blueberry concoction and that the sunset over our town was a blessing from God.

I learned that the USA should withdraw from the United Nations now that the UK has withdrawn from the EU but the vote may be reconsidered too.

I learned whose family did what this weekend, the anniversaries that were celebrated, and the babies-n-pets who have done the cutest things lately.

I learned that those with chronic illness, chronic pain, chronic fatigue, and the like are still suffering out there making me really sad.

I learned some cute slogans to remember with some attached to Bible references and cool photos. Are they be real or photo shopped?

I learned who is selling what, whose stuff is still cool to look at, and what stuff we should all win/buy/enjoy before we die.

I learned about the upcoming webinars that will cure this or that, make fat melt away, or make my business succeed if I really tried hard enough to win!

I learned how to waste just under an hour pouring into the what-you-can-see lives of others and the social media marketers of fairy tale realities, stuff, skills I need, emoticons, or whatever advertisements to distract me from living my own life.

I learned that God is more popular than Jesus . . . as a matter of fact I did not see the name Jesus Christ mentioned at all.

Most of all I learned that my daytime spent sick in bed was probably still better than the mindless, numbing, lying, evil crap that often goes on in the world around me and gets posted on Facebook. So please send me pictures of puppies and maybe a cute kid or penguin. Scripture rocks too. The rest is quite meaningless.

We’ll see if tomorrow on Facebook is any better? (I never learn!) JJ

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The Dad that never left

Published on June 21, 2016June 21, 2016 by Jesus is for the WoundedLeave a comment

Perhaps it is more of a blessing than anything else that I have more time for reflection these days. After the double-loads of laundry, medical management, treatment-and-recovery, self care, and various household duties are completed, there are generally more hours than in my past to think about the stuff of life. On Father’s Day yesterday, I started to notice some new parallels between my past and present. It went something like this.

I was posting a picture of my Dad and me on Facebook when I realized how his generosity when he stepped back into my life has become an important part of my current recovery from serious illness. His gift about 6 years ago allowed me to create a garden oasis in our backyard. Here are two of my favorite areas:

And the landscaping is all grown up now creating a lovely oasis. So grateful!

Creating the flagstone patio area required graph paper, a ruler, tape measure, and endless gazing from all angles to make the kidney-bean shaped layout meet the vision the Lord had given me. In the next 2 years the process continued with a pair of 8-foot custom steel trellises then a “secret garden” area (basically a re-purposed dog pen!). The planting beds came later as I decided that we needed more privacy from our neighbors behind us and that I wanted to have a garden-view beyond each room of the house. The bed on the right in the 2nd picture is largely of native plants and a key component in earning a Sustainable Garden designation from our local cooperative extension office. The aqua custom shade sail was an incredible find from the “sale” page of a company by the same name. Now that the design is complete the plants have matured and my heart is home.

Dontcha know that my mom was a gardener? She would hunt down the groundskeeper at the local zoo if needed to obtain a plant start of a specimen she just needed to have in her yard. Composting, vegetables, a mounded hill, hanging baskets around the hot tub spa . . . she had all the elements that made her heart happy out there in her suburban back

Mom in Spa

yard. Her creation came together because of the generosity of her parents too. Some may call it an inheritance. I call it the chance to create something beautiful from the sorrow of a lost family member. And I think it’s o.k. to spend some of it to make the process of going on without him or her a little nicer. Do something that makes your heart happy!

Flash forward 4 years from when the “bones” of our own garden were installed and I am exceedingly grateful for what the Lord has allowed me to design, to create. Lying sickly on that chaise lounge last summer when it looked like there would be little hope for recovery, brought solace of sorts. Lying sickly on that same chair this summer after taking treatments that are slowly giving me my life back is bringing hope and the flow of some new creative juices. My husband, Steve, just smiles a bit when I talk like this. He knows that could mean a little more trimming around a new garden bed or hauling of something heavy to make it happen. Oh how he loves me so! Well I’ll let ya all know how it turns out for sure!

Steve brought me to see this home on our fourth date. He wanted to know, “if things worked out between us could you see yourself living here?” Talk about pressure! I was visiting him in Indiana for the first time from the Chicago suburbs and certainly was not about to make a decision on the spot. At least out loud, that is! But I knew that the bush in the front-and-center of the bay window was a Miss Kim Lilac and just like the one I had lost with the townhome when my former spouse left me. I also knew that the bush next to it was a burning bush that gets a magnificent, fiery shade of red in the Fall and just like the one I . . . well you can see where this is going. It’s like when I viewed Steve’s profile on Yahoo Personals and saw a picture of him with a radio-controlled airplane that reminded me of the flying competitions in which my dad and brothers flew line-control planes when we were kids. Of course I knew that the house was a great idea; I just wasn’t going to tell Steve anything just yet. The home he purchased before we were married became a blank slate for me in remaking so many years that the locusts had eaten . . . . (Joel 2:25)

So I hope you can see how a simple thingy like some flower and vegetable gardens can be so meaningful to someone like me. The draftsman in my Dad has become the designer in me. His surprise generosity allowed me to create a living oasis that was an interest I shared with my mom when I became an adult. Finding a loving place to realize these gifts would come in a way like never before when I found my intended beloved in the arms of my Stevers. Solace, restoration, and hope were all set in motion regardless of my life’s circumstances according the plans of my Heavenly Dad, my Heavenly Husband; He knew all along the seeds He had planted in my heart long before I could ever dig in the dirt of life myself. And just as life on this green earth began in the Garden of Eden, so do our own lives thrive in the planted spaces in which we are tilled and turned, watered, pruned, and nurtured until beauty bursts forth in scented color, in hope beyond that which we can see.

How can I be sad about the losses in my life when my Heavenly Dad has always been there with me? From my garden bench I bid you a “Happy Father’s Day,” Gentle Reader. I pray that you, too, will live in the fullness of life that grows more grand with each passing day: a garden oasis in your soul where the One Who knows us so well can make everything meaningful, anything beautiful in the noon day sun or under the shade tree too. JJ

Dad & me at his trailer

Spacey but upright

Published on June 8, 2016June 8, 2016 by Jesus is for the Wounded1 Comment

There’s no pretending when the story gets bizarre. I mean who could make this stuff up?

As the grace of the Lord has blessed, I am not bedridden thus far in the ramp up of treatment for a serious protozoal infection. Just headaches, increased convulsive episodes at night or morning, achiness, and fits-n-starts of my ability to function. While this is certainly awful, I was sick like this every day for the middle years of these 4.5 years of illness so I am kind of familiar with it. This time we can call it a “herxheimer” (die-off) reaction and temporary! I am thinking that I have benefitted from a pretty comprehensive protocol that has finally come together:

Ongoing IV Rocephin and fluids via home infusions 3x per week for the treatment of chronic Lyme disease, per my Lyme Literate Medical Doctor (LLMD).
Weekly injections of a compounded B-vitamin and prescribed nutritional suspension.
Weekly injections of a bio-homeopathic treatment for a newly diagnosed autoimmune disease (to start in 2 days).
Additional IV fluids now pending to combat dehydration and the effects of the anti-fungal protocol.
Supplements to improve calcium trafficking as prescribed by my naturopath and genetic coach.
Pharmaceutical grade supplements including an iodine protocol.
A switch from filtered water to non-fluoridated, purified bottled water.
Anti-fungal and biofilm busting treatment of protomyxzoa rheumatica (formerly known as FL 1953).
Continued mold/sugar/sweetener/dairy/gluten-free, low oxalate and glutamate diet.
Mineral baths and celtic sea salt supplementation.
Detoxification via far-infrared sauna, nutritional binding compounds, and periodic colon hydrotherapy.
A fabulous support system.
Rest. Gardening when possible. Rest.

Unfortunately the bills are piling up as Steve and I go along. At some point we will need to decide how comprehensive of a plan is really needed long term due to the significant expense when insurance covers virtually nothing. For now all I can say is that I continue to move in a direction of recovery and we will figure out the rest as the Lord leads. Our prayers, your prayers are being answered. Thank you for praying. Praise the Lord!

Thank you Jesus for the hope we have in you and that I can see in my life. And please bless my faithful husband, Steve! Lord willing, I am going to get well! :JJ

Psalm 20:7 (NIV)

⁷Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.

Anticipation

Published on May 31, 2016May 31, 2016 by Jesus is for the WoundedLeave a comment

One could say that the days before a cross-country trip are usually filled with a multitude of tasks and anticipation of the good times to come. I’ll give a “yes” to both accounts and now we are back from coastal Alabama with pictures to share.

20160523_181947 — Paddling the Stellar S16S felt good in Perdido Bay off Alabama/Florida waters

20160526_104127 — Steve and I congratulated Elizabeth and her husband Daniel as she earned her wings to become an Army Blackhawk helicopter pilot

20160522_131937 — Our happy travelling companion Elle

helicopter, flight, pilot, family day, Army, ride, flight, school — Elizabeth piloted a helicopter ride for each of us after graduation. Awesome!

I did a lot better travelling this past week than our last trip in November of 2015, that is for sure. I was able to attend all but one planned activity by pacing myself, meticulous planning, and some improvement in my overall health. The convulsive episodes that still accompany the serious illness I am battling kept themselves largely to the overnight hours and travelling in my truck. And they were much less! Yeah God! It’s amazing how much life can fit in between the setbacks these days . . .

Now that 11 loads of laundry are done, the travel trailer and vehicles are cleaned, and even some garden chores completed I am ready. A nasty new treatment begins later this week. Resuming the infusions of IV antibiotics, a few scheduled appointments, grocery shopping, and making sure our support systems are in place come first before the darkness falls. It really could be that bad. Or maybe not?

They say that breaking up stealth biofilm and killing protomyxzoa rheumatica (formerly known as FL1953) can render a person useless. Or bedridden. Or really, really sick. Then after around 4 weeks, there can be miraculous improvement. My trial run 2 weeks ago of 1 capsule of the anti-fungal brought dizziness, light-headedness, and cognitive slowing. My Lyme Literate Medical Doctor was thrilled when I told him. (He is kind of kooky that way!) “It’s affecting your brain! That is good!” he exclaimed in a way that only a master diagnostician can. Oh boy. “I wonder what the full dosing will be like?” was all I could think about. And how will I eat? Get to the bathroom? Keep up with all of the treatments while home alone when Steve is at work? So many questions remain unanswered at this point.

This is what I know for sure. In a way, the break in treatment for a week of vacation came too soon. I was not ready to go without the IV antibiotics and daily routine that has facilitated this turnaround without some extra struggle. There was a lot of stress amidst the good times. In another way, the break fed my soul! I got to see what living was like for everyone else while being with everyone else. I got to kayak with my beloved River Bear . . . . TWICE! I did more than one thing each day and did alright trying to do so. When we got back home I got to work in our garden two days in a row. Wow, Lord. Then I read an adventure novel in 2 days! How lovely it was to immerse myself in a bit of life again.

So for the unknown treatment coming in a few days I will say this: bring it. I have faced worse than lumbrokinase and prescription Lamisil. I will go slow if I can and employ every herxheimer (aka die off) remedy I have in my arsenal if needed. The Lord has brought me through near-death experiences, daily hell on earth, despair beyond belief. I have been given a taste of life again to encourage me and those around me as well. It is time to dig a little deeper, literally. We have found The Beast in the recesses of my brain tissue. This is war. Lord willing, I am going to get well.

If we don’t chat for awhile, please pray for me and Steve, k? Thanks a bunch Gentle Reader. I am grateful for you. With love, JJ

Julie BH Crop