Tag: chronic

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