Still in shock from the news, with tears coming forth without notice
I grieve the sudden death of my brother and all that it means.
Where do I begin to tell the story of his life and mine intertwined?
I just can’t write very well right now.
One dynamic is clear though.
Just before he died, he had come to know and convey despite horrific suffering
That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.
I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.
With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.
Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.
I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.
Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.
Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,
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
The weight of my world is heavy on my shoulders right now. To move forward (or to even make my way through the current burdens) seems too much to bear. I seek my Lord’s face, lie face down in front of His cross, and just hold on for dear life during the hellish parts. In fact, holding on, just trying to breathe was the most I could do yesterday afternoon.
The local oral surgery group that helped me in the past, finally decided to move up my appointment for a consultation. I need an infected tooth extracted ASAP. Once I found out that it could be contributing to the worst of my health issues, my focus sharpened on getting it outta there! But that is a tough goal to achieve when the world is shut down due to the coronavirus pandemic. Most dental and hospital services are shut down if deemed “non-essential.” The definition of “essential” seems to vary among various medical specialties, however. Three weeks went by after my need was identified; no one could help me anywhere in my state or the country unless I waited at least two months!
After an hour wait in the waiting room of the oral surgery practice, everyone equally spaced for social distancing and many persons donning some type of mask, I was led to a dark and cold dental suite. A metal tray table near me was covered with layers of sterile tools and surgical draping. The medical assistant had already screened me for COVID19 by taking my temperature, instructed me that a new panoramic xray would be needed because they couldn’t get my CD or thumb drive from my referring dentist to work right, uploaded the new pano, and begun to review the consent forms for a tooth extraction procedure. Say what? TODAY? This wasn’t just a consultation?
Five years ago another oral surgeon in this practice required that extraction of what would be discovered as 2 infected teeth, had to be done in a hospital setting. Dr. R didn’t want the liability and clinical risks of a seizure occurring in their outpatient office setting. We agreed and braced ourselves for a $10,000+ bill, out-of-pocket! Such is the nature of dental care when done in the outpatient department of a hospital these days. The procedure was successful and miraculously our medical insurance paid for everything! The drain on our household emergency fund was reimbursed. We were amazed! And many of my symptoms improved over the subsequent 6-8 months of healing. I also had fewer triggers of convulsive episodes as a result. That is, after one hell of an initial recovery process, with virtually NO PAIN MANAGEMENT due to medication side effects. That part was hell.
So flash forward to yesterday, when I knew that this new oral surgeon would probably need a reason to schedule the extraction sooner rather than later, if it couldn’t be done with a simple numbing procedure in their office. Some Nurse Practitioner thought it would be alright to do so even after reviewing my case on the phone a second time. Not! But I still knew that Dr. S would probably have to see a seizure to make this determination. I know. Every single type of healthcare provider that I have seen while battling serious illness over 8 years has not take me seriously until he or she sees a violent convulsive episode in-person. And even when the Practitioner does witness one, the clinical assessment of my condition varies widely. Would Dr. S believe me that jaw pain and an infection was in fact triggering seizures like they had in the past? I came into this appointment having had only 2 hours of sleep the night before, hampered by a 40+ minute episode in the middle of the night when unable to fall asleep. Just tap on my teeth buddy, I have a feeling that you will find what you are seeking.
Dr. S said that the new pano clearly showed evidence of infection. Then he examined and tapped on my teeth. The violent hell that ramped up thereafter prompted him to schedule an extraction in the hospital as soon as possible!
It all started with a little shaking then quickly ramped up into twisting/writhing movements of my torso, intermittent vocalization, head-banging, and desperate gasps for air. “Just breathe. Breathe in through your nose and out through your mouth,” was the broken record I heard from the voices around me like a thousand times before. I was able to blurt out not to touch me (for additional sensory stimuli makes the episodes worse) and that supplemental oxygen might help. They put an oxygen saturation monitor on one of my fingers and wrestled a larger cannula around my face. My eyes pulled shut and my photo-sensitivity kicked in from the uncovered window in front of the exam chair, burning through my eyelids. The Doc braced me from the right and had another staff person brace me from the left so that I wouldn’t fall off of the chair. My arms yanked inward to my chest in a flexion posture, typical of these episodes. My head rolled back then pulled forward again and again like dead weight on a pulley. Finally I was able to get enough respiration going to push out the words for someone to get my husband. “Have him bring the glutathione . . . . from a bag in our truck.”
Steve basically knows what to do to help me in these moments of crisis. But someone else putting a rescue remedy in my mouth for me usually won’t work well. If he misses and the liquid or pill or snack bar runs down my face then that light-touch sensation sends me into a more violent tailspin of seizing. I have to find a way to get my arms to work, to hold the medicine of sorts, and to get it into my mouth between waves of waking seizure attacks. It takes every bit of body scanning and mechanics, awareness of my surroundings despite the finding that my eyes won’t open, and numerous calculations to figure out how to get it done. It takes many failed attempts before success. Are my arms working again yet? Can I flex my trunk forward to put the TMJ dental appliance into my mouth since I can’t bring either hand to my face? We all gotta wait it out through my trial and error.
Initiation of movement worsens the episode at all points once it has started and even when finally nearing its resolution. If I employ whatever cognitive override I may have to grasp a bottle and squirt something in my mouth from my clenched fist slammed into my chest wall, there is often a price to pay even if I am successful. Initiation of active movement triggers another spike in the wretched involuntary posturing that follows. And it kills my neck! Then there’s the hemiparesis phenomenon: virtually always I either can’t move my arms, move my legs, or move some combination of either one. Trying to open my eyes too soon brings the sensation of glaring light that triggers a slam backwards again. The worst part is that I am awake the whole time this torture is occurring. Most people are unconscious during seizures. Not me. I am aware and feel and remember everything. And there is very little I can do to help myself. Guttural cries or grunts or fires of grief often explode from deep within me, sometimes yelling for the Lord’s mercy. There can be screams of terror. Tears drip from my eyes before most of these are over. The experience is a living hell. And they still happen virtually every day. For eight years!
The extra oxygen did nothing to help me. I wasn’t sure if it would help this time or not. There was a time in the early visits to the Emergency Room that pure oxygen calmed down the episode. Not today. The glutathione did reduce the velocity of the involuntary movements. The “waking seizure” transitioned to a pressured-type of shaking. Little breaks started where I could catch my breath and try to breathe in the O2 in from my nose as directed. But the episode wasn’t stopping yet. The area below my tooth was still stinging and I knew that the episode might not stop until the pain subsided. The tips of my toes and fingers burned. At home we had topical lidocaine, a numbing agent that my Craniomandibular Specialist in Florida had ordered in January. I asked for lidocaine and helped the nurse anesthetist figure out where tooth #19 was in my mouth. She didn’t know. The seizing slowed another notch. I struggled like an addict shooting up crack cocaine to switch out bite splints, hoping to take some pressure off of my jaw. Then suddenly, the hell was over. Eventually I was able to open my eyes. And all I could do was stare out there in front of me, or to nowhere, at nothing at all. Anyone think there is cranial nerve involvement in this serious illness? Mandibular branch of the trigeminal nerve? Yeah, me too.
The nurse needed consent forms signed for the tooth extraction to be scheduled in the hospital. Another 30 minutes later, I could move my arms and hands enough to manipulate a pen to sign my name. Over an over again, I worked hard to manipulate the pen. I had a little shaky spike. Eventually the papers got signed, I could sit at the edge of the chair, head to the bathroom for some supervised voiding, cautiously walk to the front desk, and leave the building as a beaten puppy. I was fried! And hungry!
I couldn’t wait to eat the food I had brought along with me while my hero, Steve, drove us to our next destination. I was faminshed. I had not had enough time to eat breakfast before the appointment at the oral surgeon’s office. Now there were more phone calls to make to set up my home healthcare that will begin this coming week. I needed to make arrangements for curbside pick-up with for essential and non-essential business we had to do before heading home. Life goes on and so do other aspects of my healthcare, my life. Steve had to get back home and back to work. Gratefully there were free plants in the mix as well. Maybe another time I can describe the score of free, cool-season flowers I acquired in exchange for a patch of yellow prickly pear cactus from our backyard . . .
No, it’s not all hell in my world. Yesterday there was much of it to bear though. Tomorrow will be better. The death of Jesus Christ on a Friday and His resurrection on a Sunday reminds me of this. One day, all suffering in this life will end including mine, including yours. Your sins can be forgiven, heart made whole, and hope restored Gentle Reader. Don’t bear suffering alone! I don’t. And I won’t no matter how much there is to bear. My Lord is the only reason I survive and in my spirit overcome the darkness of our fallen world to brain-dump here at 4:48 on a Saturday morning.
Two million or more people moved from wandering in the desert for some 40 years to a dedicated process of preparing to realize their mission, their dreams. Virtually every need had been met over 4 decades, every action guided by the God of the universe that led them there, and all transpired with displays of majestic power to encourage them along the way. They were free after years and years of harsh slavery, multiplied fruitfully, and were about to receive all that was promised to them. What more could the children of Israel have wanted? In their own minds, much more. They griped, built golden images to worship, and failed to heed their leaders over and over again. Many were punished and died as a result; many others just followed along while some questioned where was God? Gee, these people would make “good” Americans right now!
We gripe when our needs are not met within tiny frames of time. We worship people, places, and things instead of the Lord our God. We fail to respect the very leaders the Lord ordains for our lives whether it be our pastor or the President of the United States then wonder why we personally don’t feel respected either. We resist the natural consequences of our actions, fight for some lofty goal of social justice that will never fully arrive in this fallen world, and in doing so push ourselves further away from the God of mercy, true justice, grace, love, and peace. It’s a mad, mad, mad world right now. And the more we strive in our own strength, the more we will squelch our lives of the gifts of this unique time in human history. We are at war with an enemy more “unseen” than the (.3) micron coronavirus-19. Our enemy is our very own pride. A pride that separates us from God and each other, more than “social distancing” ever will.
I live in the heartland of the United States where hard work used to pay off. Whether you went to college or worked your way up the ladder of a manufacturing plant, worked in the trades, or built a small business, you could feed your face and that of your family if you just worked hard. No matter what life threw at you, you were going to be o.k. eventually. Eventually I would come to know my own work ethic as a virtue instilled by my Lord and Savior, Jesus Christ, who gave me the skills I would need to navigate life until I found a personal relationship with Him. Thereafter, my strength would not be enough to survive: the tests and trials were too great to overcome them on my own. And by seeking His face, my Lord sustained me, provided for me, grew me into the woman that I am today. Often I don’t feel these gifts of mercy, true justice, grace, love, and peace. More importantly, I know each are there all of the time no matter what else is going on.
I’ve had a rough go of things again lately. The serious illness that I endure has only become more complicated with new thyroid issues, new dental infections that need specialized care. The latter simply cannot be addressed for weeks because of the quarantine recommendations of our government (and governments around the world). There is very little that me and my beloved can do about the need to wait for medical care, even though this type of infection is known to worsen a person’s health. I also need to find a new clinic in our smaller town to provide the infusions that I receive twice per month; they have helped keep me out of the emergency room for over a year. But only essential and emergency care are now provided at virtually all medical facilities that are preparing for the pandemic. I understand these needs. I really don’t know if several hours per day of convulsive episodes qualify for essential and emergency care when no one has figured out how to treat or stop them yet. Specialized dental care twice in the past made a BIG DIFFERENCE, however. What shall we do?
I know that the Lord sees and grieves my suffering. I know that the Lord hears and grieves the suffering of people sick with this new virus and who are afraid of all the effects it has had on our society to date. I know He hears the cries of His children whether we have professed love for Him or not. You know that we are isolated and hurting. We do need you now. We are like your children of Israel wandering in the desert, needing to see the cloud over the tabernacle by day to know that you are near and what to do. With the presence of so much evil, the consequences of living in a fallen world, the events that puzzle us but you mysteriously have ordained, the leaders over us who shun you, and the tearing apart of these once United States of America, WE NEED YOU NOW. Might we catch a glimpse of Your fire, Your glory to help us, to help me carry on this night?
In the meantime Gentle Reader, please do take care of yourself and your loved ones. Here is my prayer for you as you seek the desires of your own heart. I submit to you that you will find everything you want and need in the person of Jesus Christ.
Thank you for being here with me. Godspeed one and all, JJ