specialist – Jesus is for the Wounded

The things we do for some sun

Published on January 18, 2019January 18, 2019 by Jesus is for the WoundedLeave a comment

We’re home from our whirlwind trip to Florida that almost didn’t happen so soon after being diagnosed with new gut issues then battling the flu followed by it’s aftermath for 2 weeks thereafter. We did it anyways! Four long days of driving for 3 days in the Sunshine State. Here was our itinerary:

4:00 pm January 9th decide to pursue reservations and plans to go to Florida; finish seemingly endless packing, food and other preparations.

2:00 pm January 10th: Elle pup is the first in the truck as we depart Huntertown, IN for the campground south of Atlanta. Arrive around 2:00 am.

1:00 pm January 11th depart for Seminole, Florida. Arrive around Midnight. Set up our campsite at Bickers RV Park.

My mobile clean room amidst the palm trees!

9:00 am January 12th was Steve’s first day of the USCA Annual Meeting. I rested from various convulsive episodes en route and travelling.

6:00 pm we make our way to the banquet at a seaside restaurant. Had episodes later yet I was grateful for a dinner out with my beloved Steve.

8:30 am January 13th: Steve heads out for the wrap up of the USCA Meeting, lunch, and paddling 6-man outrigger canoes on the ocean. Great fun!

11:00 am My day begins with self care, laundry, doggie care and some time sitting outside. Some restoration begins, however convulsive episodes persist at night. Make pre-planned dinner anyways and prepare for appointment tomorrow.

10:00 am Appointment with Craniomandibular Specialist, Dr. Ralph Garcia, for adjustments to dental appliances. Begin to question where the 80% improvements of last year have gone? Drop off thank you gift to a friend, lots of driving in the Tampa area, and fit in a 45-minute walk along Clearwater Beach before returning to the campground. Even 60 degree weather could not keep us away! Episodes were discouraging to both of us later that night.

11:30 am Pack up and depart for Chattanooga, TN. Arrive after midnight. My Nissan Frontier is a workhorse yet requires stops for gas every 110 miles! Elle pup made the entire trip nicely.

1:30 pm Pack up and re-winterize Camplite for our return to freezing temps back home. Depart for Huntertown, IN by way of Nashville.

3:30 pm EST meet up with Steve’s sweet daughter, Rebekah, for early dinner. Ramp up of convulsive episode at older Thai restaurant prompted me to leave, scramble to the truck, and take some Prednisone. Episode resolved (meds prevented further episodes later on this night), so we head to Panera Bread across the street for a nice visit. Got back on the road around 6:00 pm.

3:00 am arrive home and start unhooking the travel trailer, unpacking, decontamination procedures, urgent laundry. Grateful for the ability to do all this work on a short night of sleep followed by long days of travelling. The Lord added His increase once again!

5:30 am: heading for bed with prayers of gratitude for safe travels, the Lord’s provision of this trip, some sweet moments, and fewer symptoms between us of the flu/cold that began 3 weeks ago. I’ll spend the next week cleaning the Camplite, doing laundry, restocking, and reorganizing as required when camping in our “mobile clean room.” Maybe I’ll get to finish 2 sewing projects for the bunks soon too?

How amazing it is that I got to go to Florida! “Warm sunshine” is very therapeutic as is getting a change of scenery. Yeah God! I love travelling with my Stevers. My heart is filling back up again . . .

Something old, something new

Published on October 3, 2018October 3, 2018 by Jesus is for the WoundedLeave a comment

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

I’m still here

Published on April 16, 2018April 16, 2018 by Jesus is for the WoundedLeave a comment

A brief update:

A second trip is now behind me to see my Craniomandibular Specialist in a southern state and the problems plaguing me for 6 1/2 long years are significantly less and yet my progress has plateaued. Maybe it’s still the fatigue of travelling alone for the first time in 11 years? Holy cow, I did it! And ugh too. It was hard. Regrouping and resting now, changing up a few things, and I am noticing that those changes are already helping, for example, to reduce the daily headaches to a trace level. Amazing!

I am tempted to be discouraged about the plateau in progress and some setbacks but I will choose not to be so. Both happen in the jagged line of recovery from serious illness.

Life goes on and the care of a family member in that same southern state began before the first medical trip. Looks like the Lord had more planned than we originally thought when my hubby and I took a leap of faith to seek treatment 1,000 miles away from Indiana! We are now preparing to welcome my Aunt into our home for 2 months this summer after many hours of preparation, work, and communication with multiple parties. There is much to do!

Seems that the Lord wants me to keep moving forward as he has created a new role for me with increasing responsibilities: caregiver. I never thought that it would be harder to care for one tiny lady than the TWENTY I served in a day in my professional role as an Occupational Therapist. Right now it is!

My Doctor’s office cancelling 7 medical appointments already this year due to chaotic scheduling issues confirmed my pursuit of a new integrative medicine specialist. My Doc is upset and I am proceeding to transition some of my care to her anyways. The change is refreshing and creates hope in some areas not addressed of late.

Steve and I have several decisions to make should my family member decide to move in with us later this year after her summer visit. Some parts of our life could accommodate her easily, others not so much. We will have some financial decisions to make involving vehicles, housing, and several lifestyle choices. Could be good? We are exploring many options and leaning on the Lord as we go . . .

I am a bit overwhelmed with the new modalities that have come since pursuing specialized Temporal Mandibular Disorder treatment, from application of a TENS unit to switching out dental appliances every time I eat or sleep. Wonder where I have been instead of writing updates on the Hope Beyond blog? I am still here, flossing my teeth 4 times per day! Spitting mouthwash into a baggie in my truck after eating between appointments when away from home is not that unusual for me now . . . from the back of the parking lot where no one can see me of course! Oh my!

The biggest change of late is having a bit more energy and mental capacity to do a little more a few days per week. I am exceedingly grateful for this. Thank you Lord! We anticipate a lot of changes, projects, and the need for both physical and mental stamina this coming year and looks like it is coming little by little. I hope the finances for everything will follow as my Go Fund Me campaign has also plateaued! We will figure it out, so no worries. The first of the two medical trips is now covered, gratefully. God is good and the Great Provider has always cared for our needs. I can see a possibility of working some within a year a so depending upon the needs of our “new” family member; she may move in with us permanently or choose to live closer to her adult children in Michigan. Just not sure yet.

I am tired. Healing takes sooooo much energy from healthy food and rest, good supplements, time with the Lord, and restoration activities with my beloved Stevers. Sunday was my birthday so we did that last one. A simple day was a great gift with my bestest buddy. I love him so much. I am so very glad that you are still here too. I could never have made it today without you Babe. Thank you Jesus for Steve. Please bless him this week and encourage him as he works so hard for both of us. Infuse him with your Spirit to lead us through this maze of life in which we bumble along. Help me to love him, respect him better and better too.

woman, birthday cake, birthday, carrot cake, celebration, lunch, with husband, Christian, woman kissing cake, table by the window, lake view — Carrot cake was my birthday treat at the Oakwood Resort on Lake Wauwasee

I know that the Lord has gone before me and been with me, drawing me to Himself and bringing me to the moments He planned for me yesterday, today, and tomorrow. I lay everything named here in your mighty hands as I prepare to go to sleep. I know that You are still here too.

And on that promise all of us here may rest. You too. Godspeed Gentle Reader, JJ

I gotta change my teeth!

Published on March 18, 2018 by Jesus is for the WoundedLeave a comment

Alright. It’s a few decades too soon in my life to be fussing over fake teeth in a restaurant but that is exactly where I have landed. Or an acrylic mouthpiece of sorts, that is. Then there’s the one with metal wires in it. Aaaargh! This is all kinda gross, especially with bits o’ lunch in thar!

It’s not your average bear that carries around a bottle of mouthwash in a gallon Ziploc freezer bag with 2 paper towels, a funny little brush and a clam-shell plastic box with air holes in it with a spare mouthpiece in tow. Gentle Reader, you knew I was not undergoing a normal treatment plan when I signed up for this next phase in my recovery from a serious illness. After all, who said that specialized dental appliances would stop almost 7 years of daily seizure attacks?

The answer: no one really. Persons with Tourettes Syndrome, dystonia, and tics have found relief in addition to persons with severe TMJ or Temporal Mandibular Disorders. Only one expert mentioned “atypical seizures” and another “movement disorders.” It was the Lord who led me to examine my own pattern of symptoms and triggers, led by an observation from an ENT in a recent exam, and extensive research that seemed to indicate that I, too, might benefit from this highly skilled approach within the dentistry profession. It made sense to me that a Craniomandibular Disorder Specialist would be able to relief pressure on my aching jaw. If it relieved pressure on cranial nerves in the surrounding tissues as well, then there would be a good chance that many of the episode triggers and the convulsive episodes themselves could go down. So I interviewed thirteen professionals in the USA then said, “sign me up!” My beloved agreed. Graciously, many wonderful folks helped make it happen.

And I am glad that it did happen. The convulsive episodes are now EIGHTY PERCENT IMPROVED!!! Yeah God! Praise the Lord! Holy cow! Cool beans! Plus every other exclamation of joy I have ever used on this here blog. Just Julie is going to get well! I can now lie down and get up from bed most of the time without 30 or more minutes of convulsive episodes. THIS IS HUGE! Bonus: my reactivity to noxious sensory stimuli is also down. My posture is better. I am able to eat a few more foods that I have been able to in many, many years without triggering a seizure. Other symptoms have come and gone yet even the nagging jaw pain is also reduced. I am looking forward to seeing what will happen over time as the improvements continue . . .

The battle is not yet won, however, as my devices will need adjustments and I’ll possibly need new dental appliances as time goes forward. This will require significant travel to my Doctor out of State, a leap of faith in the Lord’s provision, and a massive testing of my health status to travel by myself. Am I up to the challenge? Absolutely. We will plan carefully and proceed with caution. Looks like I am on a good path for recovery at last. I am humbled and grateful beyond what I can put into words. Thank you Jesus!

Here are a few pictures from the process from my first week on this new journey. I look a mess in most of them yet that is because I was very sick going into these appointments. I had six violent convulsive episodes just trying to do the 5 hours of evaluation and was quite depleted by the time it was over. Afterwards, my hubby and I were so trashed that we stood in the parking lot late that sunny afternoon and ate every snack and drop of water we had with us! It took days for me to recover yet somehow I knew that my life was about to change very soon. Three days later I had another very long appointment to receive my mouth splints. The changes began within a day and continue three weeks later! Stay tuned for more good news as this story develops.

Gentle Reader, if you are struggling with serious health issues, I encourage you that the Lord sees your suffering, grieves for you, and promises to be there for you for each and every breath, now and forever. Call upon His name. There is “hope beyond” what we can see. Consider trusting the person of Jesus Christ Who will see you through, carry you this day and always. I would have never made it this far without Him. I hope we can share in my joy together someday Gentle Reader. Our God is good! JJ

xray, dental, appliances, TMJ, TMD, specialized, dystonia, seizures, atypical, tics, Tourettes, Dr. Ralph Garcia, craniomandibular, disorder, treatment — Assistant Josh took about a dozen x-rays to start the evaluation process.

124 — Dr. Ralph Garcia takes a detailed history; the smell of acrylics from the lab requires wearing a mask.

134 — Bite evaluation by Dr. Ralph Garcia

207 — Assistant Julie takes photos with and without the new dental appliances.

141 — Multiple impressions are taken with soft polymers that triggered episodes when the material was cold. Trying to stay calm to get the proper fitting was challenging.

20180219_133358 — Waiting room in Dr. Ralph Garcia’s office! We definitely are not in Indiana!

Sunset Beach, Florida, Tampa Bay, wife, husband, couple, married, sunset, sunrise — A little shy first time out in public wearing the smaller of the two dental appliances so I could have a snack while watching the sun go down on Sunset Beach. So grateful that my Dentist’s office was in sunny Tampa, Florida!

Julie’s Neuro Treatment

Published on January 27, 2018February 3, 2018 by Jesus is for the WoundedLeave a comment

Christian couple, husband, wife, marriage, God, centered, focused, pulling together, trials

In the stories entitled, The Next Big Thing and Pursuing the Next Big Thing, I described the rationale and planning for a new treatment of the serious illness that I have endured for six years. Steve and I are making our travel plans to see a Dental Practitioner out of State whom we are confidant can help me get well. There is much to do!

Dr. Ralph Garcia uses state-of-the-art dental appliances, some that he has invented, to improve cranial-temporal-mandibular dynamics of the head and jaw. Dr. Garcia’s extensive assessment includes radiology imaging, electromyographic testing, clinical history, and a detailed assessment of the musculature of the face, jaw, neck, back, posture, and dental structures. Interventions can include manual therapies, medications, TENS unit treatments, and most importantly custom designed upper and lower dental appliances. The goals may be to extend the underbite of the jaw or increase the height of the temporal-mandibular joint (TMJ) to take pressure off of displaced or perforated discs in the joint. Adjustments in the device are often needed within the first week and at approximately 6-week intervals thereafter, up to 8 times this year. Just today I discovered that an orthodontic surgeon fairly skilled in this area of practice and residing in a major city 3 1/2 hours away may be available to make some of these subsequent adjustments. This is good news!

Over time the benefits of these specialty dental appliances can include relief from sleep apnea, pain, tinnitus, headaches, sensory changes, clicking or popping sounds, movement disorders (e.g. tics, seizures, Parkinson’s, Tourette’s, etc.), and more. The former have plagued me since an auto accident in 1996; the convulsive episodes began on a daily basis in April of 2012. Every night, sometimes overnight, and most mornings I wake up with seizure attack episodes of varying duration and intensity. This makes trying to get restorative sleep a frightful experience for me, knowing what awaits me when my head hits the pillow. Or in the evening when my body is tired and posture is slumped from the burdens of the day. Last night it was right here sitting at this computer that my body produced a gutteral utterance and repetitive head thrashing. When I re-gained voluntary control of my hands, I placed my fingers in my mouth to attempt to reposition my jaw, make it protrude forward. The episode petered out shortly thereafter. The same thing happened in a chiropractic adjustment today. This time I was able to mumble to the chiropractor to protract my jaw when some earlier neck stretches had triggered an episode. His hands pushing on my face hurt. He removed his hands and the neurologic event ended within 30 seconds. That just doesn’t happen! Wow! How cool is that?

We believe that we are finally onto something good and trust that the Lord has gone before us in leading us to this specialty treatment for a Temporal Mandibular Disorder (TMD). I am grateful to have a skilled chiropractor locally to address the related orthopedic issues, the dysfunctional dynamics of my TMJ. However, we have come to understand that the TMJ/TMD assessment and treatment are extremely expensive and will require out-of-State travel for almost 3 weeks. I have started a Go Fund Me campaign to raise $10,500 needed for my care as indicated below. Don’t freak out about the consultation and appliance fees! This figure is typical and even more for the top specialists in the USA treating persons in this manner with complex illnesses such as movement disorders. The research and science is established. The TMJ splint and later anti-snoring appliance that my local dentist made for me about 7 and 4 years ago, respectively, hurt my teeth or caused me to choke. Imagine waking up from a sound sleep whilst choking on an acrylic appliance in your mouth with your head-banging violently in an involuntary seizure attack. (Go here for videos.) Frightful indeed!

Budget for Julie’s Neuro Treatment:

$4440 initial consultation, testing, and fabrication of dental appliances.

$215 follow-up adjustment after wearing them 1 week and before we return home.

$2,000 for gas towing trailer (as I cannot stay in hotels without triggering seizures) and campground reservations.

$745 x 4 = $2980 For airfare, 2 nights hotel, and 2 days rental car x 4 estimated follow-up visits.

$215 x 4 = $860 For dental appliance adjustment consultations with Dr. Ralph Garcia; no monies budgeted for Dr. Richard Crowe in Chicago if appropriate for interim adjustments.

$10,495 Estimated Total for 2018

Here is the link to my Go Fund Me Campaign to support my neurological treatment with a donation of any amount.

Fundraiser for Julie’s Neuro Treatment

Please join us in prayer and donate if you can for this promising development in my treatment plan. Steve and I are very optimistic, feeling the Lord’s hand guiding us with your prayers covering us in love. Lord willing, I am going to get well! Thank you for being here online with me these past 6 years. Yous da best!

Godspeed,

Just Julie