Another Direction, Wannabe

Two weeks, 6 Dental considerations, 10 prescription medications, numerous rescue remedies and supplements later, the complete resolution of a dental procedure remains in the distance! Perhaps you know the story here and here where I suffered with anguish then crawled my way into renewed hope with the extraction of an infected tooth. Yes, the tooth is out. And no, I am not convinced that the infection is resolved. Some goo came out 3 days ago and the gum is still somewhat inflamed. Pain is not yet resolved. How can inflammation go down when there is goo? No one seems to believe me that this nightmare is not yet over, that there is more that can be done to help me.

The struggle continues this night with a less-clear course of action from here. Dr. L, the oral surgeon, says everything is normal and won’t see me until a month from my call last week. Dr. K, the referring dentist who diagnosed me, says the medications prescribed are “strong,” what else do I need? Yeah, I agree they are strong and the side effects created 2 new symptoms! I don’t need stronger. I need a modification in my treatment plan! Dr. J, my medical Doc, says it’s healing epithelial cells that oozed out; use some anti-microbials topically. Already on it sir but one of them has inflamed my gums so I had to discontinue it. Oh and the antibiotic tore up my esophagus so I had to discontinue it too. Dr. R, the Biologic Dentist out of town, still won’t see me in this COVID-19 pandemic even though he is the one who has the procedures and expertise to clean up this mess. Then there is Dr. B: the one whose office WILL treat me with IV Ozone this week because hey, I am willing to pay for it. So it is to the office of Dr. B we will go for a systemic treatment of infection and inflammation. Lord willing, I am hoping it helps!

Lots of tears have drained from my face these past few days. I went 8 days with nary a convulsive episode then they returned as my intolerance to pain medication of any type progressed. I went off of icing 24/7 only to return to this treatment so I can sleep at night; it seems to reduce the risk for seizure attacks as well. But make no mistake: the cranial nerve complex in my face, predominantly the trigeminal nerve (teeth) and vestibulocochlear nerve (ears) on the left side are still inflamed. A sharp banging sound of my hubby pounding a board while putting together a raised bed triggered all matter of hell breaking loose! It was all I could do to slam myself down on the sectional before the episode of involuntary shaking, gutteral screams, flexion posturing, leg posturing then flopping, writhing, and finally weeping in exasperation. I was helpless. And I am really spent after years and years and years of this hell.

Somebody please figure out how to calm down these nerves in my face, k? Can’t some dental, medical or otherwise knowledgeable person figure out how to fix it? Will the Great Physician speak healing into my life soon? I know that healing will take time from the second tooth extraction procedure from hell. (The first was in 2015 with extraction of 2 infected teeth and virtually NO PAIN COVERAGE after the first day! It was just too much to bear.) The trauma of these repeated incidences of convulsive episodes, complicated/painful medical procedures, and waning compassion from the medical community create a type of Post Traumatic Stress Disorder. Each new procedure brings grief and tears as I earnestly try to work through issues of appropriate pain management and recommended treatments that my body ends up not tolerating. IT IS NOT MY FAULT THAT I CAN’T FOLLOW YOUR TEXTBOOK PROCEDURES PEOPLE!!! Welcome to chronic illness! Even when I do the work of researching everything and writing down what works for me, they really don’t care much past the initial service or consult. Dr. L changed one med then prescribed what Dr. L prescribes. ISN’T THIS PART OF YOUR JOB PEOPLE!!!

Looks to me like there is a subset of Docs within any area of practice that really doesn’t like a smart, engaged, researched female patient who is really trying to make your job easier. When I bring a list of questions and show it to you it’s because I am scared and don’t want any further harm than the illness or the potential procedure otherwise might bring. I am trying to make things easier on BOTH OF US. Please listen to me. Please bring your best to our appointment as I will too; I have taken hours and hours to prepare already. I am scared; please be nice to me. Please follow-up with me and allow me to participate in my care. I want to be YOUR BEST PATIENT EVER! If we are successful together then know that I will write your praises everywhere with a clear and compelling testimonial. Isn’t that worth something to you?

I wannabe well. I realize that I might not get to be well. In the meantime I hope at least to have some good moments beyond the medical crap that dominates my life. I fight for moments of normalcy every day despite chronic pain and numerous medical problems. It might be too much to ask for the Docs to want something bigger for me beyond the procedure he or she is rendering. I get it. You have lots of patients and a practice to run and can’t get bogged down with one more problem to solve. Well just maybe this is why you got into the dental or medical field to begin with some years back? Saving lives? Bringing cures? Helping people feel better? Something more than money and prestige must have brought you into one of the most respected professional titles on earth. You can do it Dr. L, Dr. K, Dr. J, Dr. R, and Dr. B. Let’s see you try a little harder for me.

In the meantime I will rest in the arms of Dr. GP, the king of surgery of the heart, mind, and spirit. One day I know that I will be whole again in Your presence. Oh dear Jesus, is this all there is this side of heaven? I’m just so very broken. Thank you for listening. Thank you for your provision in my life including the most incredible helpmate and love on earth for me in Steve. Thank you for the ability today to make a nice meal for us despite the pain and problems. Thank you for protecting us from the virus that is wreaking havoc on our world. Just thank you. JJ

Spring brings the promise of newness of life. It just does. May it do so for you too Gentle Reader.

Something old, something new

Soon I will come up on the seven year anniversary of when serious illness entered my life.  No, I won’t be kayaking in the Cedarville Reservoir to commemorate October 11, 2011!  That’s the day I contracted viral hepatitis and never really recovered.  It’s been a complicated journey since then, trying to get well.

Soon I will meet with my Doctor and see what he thinks about a new treatment with which I have been experimenting.  Recently I wrote about how devastated I was when  some vascular studies revealed no new information about why the convulsive episodes continue.  Over the next week I dwelt at the foot of the Cross of my Savior and He showed me some things I had not considered before:  many of the triggers of episodes have had something to do with my neck.  The CT Angiogram helped me examine this issue more closely and led me back to a comment by an ENT specialist back in January.  He said I should look into vagal nerve seizures and so I did.  That process led me to pursue specialized dental appliances that helped take pressure off of most of the cranial nerves involved in episodes and they started coming down within a day or two.  Adjustments in the appliances helped further then the improvements waxed and waned as time went on.  It is now 7 months later.  They are a pain to wear and look weird.  What else could be going on?

Soon I may have more of an answer to that question as I experiment with specific stimulation of one of the 12 cranial nerves:  the vagus nerve as it travels through my neck area.  A person has to be careful with this as it lies in close proximity, distal to the carotid arteries, thyroid, and parathyroid glands in the front of the neck.  Indeed vagal nerve seizures is a part of some forms of epileptic seizures and is treated with a surgically implanted vagal nerve stimulator.  A person has to have a diagnosis of intractable epilepsy or migraine headaches with treatment failures from trials of two types of medications before it is deemed medically feasible.  For me, no epileptiform activity was ever detected in EEG sleep studies even though numerous convulsive episodes occurred during two different studies in two different clinics.  I now wonder if they should have been watching the heart monitor not the EEG monitor when the episodes spiked.  Changes in heart rate and other vitals can accompany a seizure.  I have experienced this.  Were these factors recorded but missed in my clinical studies?

vagus nerve, vagal nerve seizures, vagal nerve stimulation, non-epileptic seizures, psychogenic seizures

Hopefully soon my experimentation with two different vibrating wands will stop these wretched seizure attacks altogether.  I found 2 very simple devices that I could carry with me, experimented until I figured out which ones work better at a given time of day.  The high-frequency wand makes me sleepy so I use it at night.  The lower frequency wand is more effective during the daytime should I feel the symptoms of a pre-tic episode.  How cool is this?  Yes, I still need to avoid certain head-and-neck positions due to other cervical spine issues, get back into either chiropractic care or physical therapy, and review everything with my primary Doctor.  I will continue wearing my specialized dental appliances.  In the meantime, it sure is nice having a better option than Prednisone (which I can only take in emergency situations!) to bring real relief for daily involuntary head-banging!

Will letcha know really soon, Gentle Reader if this all leads to something GOOD.  In the meantime, I am encouraged.  And grateful.  Thank you Lord, for bringing hope beyond what I can see once again.  JJ

 

The times inbetween

Tis a time for more resting than doing

And it is unusual for me to give into the slower pace

But give in I must.

The rain garden project awaits an instructor’s touch

While our own landscape decides if bushes or an Amilsh “mini garage”

Will grace the outer banks of our bedroom.

Shall I attempt to rip out the red twig dogwoods,

My fav in garden beds here and the ‘burbs of Chicago

That don’t really like their sunny home but delight the view out the bedroom window til late summer?

The dog days of hot weather have sapped my zest for projects, most anything green

Or maybe it’s from having to stay home when hubby got to go without me

To his National paddling competition afar; yeah I was too tired to even go.

Yeah, I’m kinda down about all the failures these past 2 months —

Alas the Lord spoke to my heart; now maybe they shall give rise to something better for me?

The times in between the hills n valleys can bring a fresh new look

If I but heed the call to slow things down a bit, to rest

There are but a few tic zips here and there so I do believe something is going right at last!

Thank you Lord for seeing me through to this day

For allowing me to pass through the fiery tests, the times of despair, and hopelessness too

I may even get to go paddle locally tomorrow with my beloved River Bear.  Now won’t that just be saweet if I do?  JJ