If it weren’t bad enough that the beast meets me as I am falling asleep each night and before most naps, add to it the treatment rituals that make my bedtime routine laborious to say the least.
Here’s my brain dump to maintain my sanity, my health . . . Such as it is, that is!
Turn on the electric bed warmer pad ahead of time to warm the sheets then turn it off when going to bed. Warm sheets decrease the shock of otherwise cold sheets that have triggered episodes in the past.
Adjust the thermostat if the weather is cooler so we don’t overheat when sleeping.
Remove the comforter and 2 decorative pillows from the bed and place in guest bedroom.
Position a pillow where my knees would go and another where my back would go and another to hug in front of me. This allows positioning for what therapists call “back precautions.” Knees slightly bent with “neutral spine” alleviates pressure on my low back.
Foam pillow top over the mattress cushions the bony prominences and joints. So comfy!
My Pillow-brand pillow contours to the head-and-neck nicely for switching from side to back overnight without pushing my head too far forward off of the mattress.
Wear a long-sleeved shirt over my bed clothes to keep my neck and shoulders warm overnight.
Take nighttime supplements and hormonal creams but not too close to bedtime for the former.
Moisturize with various products for various body parts!
Now apply an eye cover to create darkness for better sleep.
NEW: pack of ice wrapped in a hand towel placed mid-sternum. Calms vagus nerve to actually decrease convulsive episodes!
Temporary addition: cardiac event monitor control pack tucked into a pocket for 7 days. In the event of an episode or worrisome symptom, get up and go into the bathroom to record the incident. (The unit has no night light!) This is one of SIX tests in a workup going on right now before seeing a cardiologist who specializes in electrophysiology. This all came about when I noticed some heart rate variances during episodes. More clues towards a potential cure? We shall see.
Get up in the middle of the night (or morning) to complete sinus rinse procedure if I wake up with annoying sinus drainage. Go to the front bathroom if Steve is still sleeping. Attempt to go back to sleep or do a passive activity until I am tired again. Eat, take care of the dog if needed.
Do you see a typical nightly skin care routine in there? Nope. I guess I am a “high maintenance” woman of another type. Exactly what type is that? A very odd one perhaps! Such is life. Better go start the routine . . . It’s nearing 5:00 a.m. and my bedtime is approaching. Yes, things are nearly reversed again in an attempt to wait until I am exhausted before trying to sleep. Seems to help, except when I have an appointment the next day. Then I spend the next 24 hours trying to catch up. Ugh. Sigh.
Our pup is so very confused by this routine! Good thing she has furry eyelids to keep out the light. Maybe I need them for my nightly mayhem too? JJ
Like many times before in January these past 7 years, I am seeking a new direction for my medical care as a serious illness continues. A recent autoimmune blood test found antibodies for a particular type of central nervous system disease. So of course we are off now pursuing the next big thing! Here’s an initial brain dump on the subject (absolutely no pun intended!).
Autoimmune disease (AD) is a disease in which the body’s immune system attacks healthy cells. There are up to 100 different types of AD (depending upon which resource you use) and 3 triggers that I can discern that initiate the onset of symptoms:
Gene expression that gets turned on. This is where your have genetic markers for a particular condition coming from somewhere in your family tree that starts to express itself as active disease when triggered by stress, infection, toxicity, or some traumatic event.
Infection by bacteria, fungus, or viral agents. This appears to apply when the infection is severe or chronic.
Cancer. This may be a chicken-or-egg type of dynamic where a patient may never know what came first.
Docs have diagnosed me with a few conditions in the past that may be considered autoimmune disease. But it wasn’t until my Doc finally decided to start testing me for AD antibodies (Cyrex Array #7) that something concrete was identified and it is serious. The condition mimics a neurological disease that my Father had. The biotoxin illness that triggered my 7 years of chronic illness (beginning the same year in which he passed away, interestingly) and subsequent infections may also contribute to my situation. Thankfully, no cancer has been identified so we will stick with the first 2 triggers as entering me into the AD phase of my long term treatment plan.
So I started researching as usual and discovered two primary approaches to neurological disease in general: 1) manage the symptoms of a debilitating, degenerating course, or 2) treat it with immunotherapy and medications that have the potential to reverse its course when there is an AD component. My Doc suggested continuing various supplements and physical therapy. A second Functional Medicine Doc suggested a “functional medicine chiropractor” and a neurologist who specializes in Parkinson’s Disease. Of course I will consider these but I am also not going to wait around while my body deteriorates without seeking something more substantial! Fortunately it appears that for me, there may be medical treatment options including what is called IVIg that have the potential to REVERSE THE EPISODES THAT APPEAR SEIZURE-LIKE, VIRTUALLY EVERY DAY FOR NEARLY 7 YEARS! Yes, let’s do that!
Yesterday I set up an account and submitted a brief case history for review by the Autoimmune Clinic at the Mayo Clinic in Rochester, Minnesota. Their neurologists specialize in neuroimmunology, participate in the latest research, and are willing to initiate trials of immunotherapies and medications to help their patients. I had contacted a couple of researchers directly, consulted the leader of a regional support group, watched lectures and interviews, and reviewed the literature on the factors relevant to my case. “Time is brain” and “time is cerebellum” appeared several times in the studies, suggesting not waiting around for something to happen. Overall, this field of study is very complex; I believe that I understand the main principles enough to share with my beloved Stevers and, as one accord, proceed in this new direction in my medical care.
As with anything new and complicated, there are many unknowns ahead of us. Will the neurologists accept my case and when will I be able to schedule my consultation, testing, treatment? How much, if any, will my insurance cover? How will I tolerate a lumbar puncture procedure likely needed for comprehensive diagnostic work-up even if administered under anesthesia? Will we be able to pay for the travel and out-of-pocket expenses that, for immunotherapy, could exceed tens of thousands of dollars? Can any of the treatment, if indicated, be completed locally and how many times will I need to return to Mayo Clinic (a full day of driving away from home)? In the winter when it’s too cold to camp, will I be able to tolerate staying in a hotel often laden with fragrances that trigger convulsive episodes? Will our aging and endearing pup Elle be able to travel and stay with us?
You know we are praying about all of these questions already! I am a bit frightened by the diagnosis I have been given, having worked with persons with movement disorders during my career as an Occupational Therapist. Yet I am also in awe that this information came NOW and not 3 years ago when I first considered a consultation at Mayo Clinic. We have learned so much since then, ruled out other conditions that don’t apply to me, treated conditions that put me in a better position to benefit from an Autoimmune Clinic, confirmed that this illness is not psychiatric, and know the process of travelling for medical care (as in my craniomandibular specialist whose care continues).
I feel like the expression on Elle’s face in this picture. Three paws in view and one paw under the rug with the unknowns lurking underneath there as well. Will there be Rubber Duckies or sweetness from the Lord to lighten this journey? Surely. Each phase of this time in my life has brought blessing with the hardships. Besides, you know I love road trips with Steve! And Elle!
Hang tight Gentle Reader. We may be headed north really soon! JJ
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.
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
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