Ten years ago I was Divinely selected to endure an often horrific chronic illness. I trust that the Lord ordains this plan for my life for my highest good and perhaps something good for the people around me. Certainly there was much bad for me and for the people around me, especially my husband of 3 years at the time, Steve. A decade later I am not exactly sure where Steve is on things at the moment but for me my mindset remains: WHATEVER IT TAKES!!! But maybe not in the way that you might think it does.
We have endured much, Steve and I. The stress level was so high during the remediation of our home for mold in 2013 that one night we nearly breached the fatal blow of divorce. I stated that “I would not hurt me to love you.” We just stared at each other. I had been living in a hotel at the time which was during the 76 days I was away from home. We were hemorrhaging money trying to figure out what to do and each of us had different ideas that barely overlapped. My Doctor had prescribed both traditional and alternative medicine treatments, one of the latter of which had made my condition much worse only we didn’t know that at the time. Steve was travelling between the house and the hotel while his adult daughter chose to stay in the house. With full time work and other obligations ongoing for Steve, his stress level was visible, tangible. And then the work on our house was done and I was able to come home. But unfortunately, the daily violent convulsive episodes quickly ramped up again. We were exasperated. The hardwood floors in our home are still nice though.
Ten years of researching, doctoring, extensive medical testing and treatments, genetic coaching, physical rehabilitation, trips to major medical centers, supportive counseling, pharmaceutical grade supplements, science-based modalities, specialized and traditional dental interventions, and finally pain management have improved my quality of life. My worst symptom, the convulsive episodes, have diminished; there’s about one bad episode every 5 days now; tic attacks most days with at least one day per week without one at all. Score! Yay God! I still have to avoid most strong noxious sensory stimuli such as sustained loud noises of a certain pitch and some types of mold that grow inside buildings, homes. We practice a version of extreme avoidance to make our home (and travel trailer when on the road) as safe for me as possible. The ongoing re-testing and treatments are still very expensive, limiting our budget for other projects and interests. The ongoing whacks of illness are still very costly in terms of social engagements and recreation. I still sit home alone a lot more than before I got sick with a serious illness and yet the isolation is breaking somewhat as I learn to navigate some improvements in functioning. It’s a natural process. I feel better and do more. I feel sick and do less. Such is the life I have come to understand.
Then one Friday night came with a major setback. I had recently pursued pain management services and was prescribed a few interventions largely for neck and headache pain that have reduced my symptoms up to 50%. After experiencing headaches so bad for the past year (and earlier in this illness) that I couldn’t get out of bed, THIS IS HUGE!!! The progress is tenuous however. Just like any chiropractic care or physical therapy: the next seizure attack episode wrenches my neck so badly that the gains can diminish or even disappear. This happened again with the surgical nerve blocks about 6 weeks prior. Dang. The violent convulsive episode 2 nights after writing this blog was so bad that it erased all gains from the Pain Management clinic completely! Not only was I horrified by the violence and scope of the episode, I have a new whiplash, a new back injury with which to contend. I AM CRUSHED!!! It’s spring for crying out loud. I’m an Extension Master Gardener who uses her better days to get outside in the dirt or serve as Editor of our county Extension’s newsletter. It’s a real struggle at times but it’s my “job” right now. I still rarely get out for anything social or worship-oriented, however. The challenge has always been to figure out how I was going to do anything in the post-ictal/recovery phase of the daily episodes when I can’t even figure out how to get out of bed? I had a setback like this on Friday; it was that bad all day yesterday.
For some reason yet to be determined, Steve was 42 minutes late picking me up at the local grocery store. I had a minor tic episode about 3 hours earlier and was fatigued from the recently diagnosed dehydration and other abnormal labs, troubling symptoms. IV fluids and more labs were scheduled the next week. We really needed groceries so I talked with Steve about how I could get the shopping done and best manage my depleted energy levels. The plan was for him to drive me to the store and pick me up later. But for some reason our timing got way off. I was left standing in an exceedingly moldy entryway of the store, not realizing what was going on, exhausted plus trying to stay calm and manage the thirst and need to go to the bathroom that were increasing. I had forgotten my phone. He knew that. I felt vulnerable standing there as I was getting sicker, worried that I would have an episode in public. People came and went and I just stood there, checking for Steve in our truck about 18 times. Maybe he forgot me? I was panicking. Somehow I exchanged eye contact with a very friendly-looking woman leaving the store with her own full grocery cart and figured out how to say the words needed to ask her to use her cell phone. (Forgetting my phone should have been another clue that I should not have gone to the store for and hour and a half of shopping. Maybe I should have done the remote shopping service we had used in the past? I just didn’t want to use up my Saturday dealing with 2 weeks worth of a grocery order while my husband was away at a sporting event. I wanted a day-off too. But you don’t get a day off when battling a serious illness, even when in the slow-mo phase of what appears to be recovery.) I made the call on her phone. Steve arrived 24 minutes later. I raced back into the store to use the bathroom while he loaded the groceries into the truck.
My physical discomfort came down a notch as I walked from the store back out into the cool spring air to the truck. I hoped it was reviving me some for the chores to follow at home of dealing with the groceries and making something for us to eat. That’s not what was to be, however. My mind was clearing enough for it to register that I had been in a moldy foyer of the grocery store too long and that the continuous opening-and-closing of the automatic doors did not protect me from a major mold hit. I quickly became aware that I was in the pre-ictal phase: the ramp-up to a major convulsive event. My gait got stiffer as I honed in on the door of the truck just wanting to avoid tripping and falling in the darkness. Steve was holding the door open for me. I could not speak. I believe I thanked him. Maybe I didn’t.
What followed can only be described as a waking hell-on-earth. I don’t know why I have to be awake for these violent convulsive episodes but that is what happens for me. I would rather pass out and deal with a bump on my head than know the horror of the wretchedness of my limbs shaking in various combinations that ramps up to spontaneous vocalizations of terror, writhing like a child with severe cerebral palsy, then hanging like a limp doll until the next wave hits. Whiplash, repetitive motion injury, flare of painful peripheral neuropathy in my fingers and toes, back pain, gasps for air, inability to speak, loss of motor control (aka hemiparesis), and increased sensitivity to all 5 senses that can intensify the episode, filled the next hour or so. My body extended so stongly, it pushed me between the front seats and into the back passenger area. Finally I could sit in the front passenger area and Steve fastened my seat belt for me. I couldn’t use my hands that were involuntarily drawn up to my chest in a flexion posture. He drove us home as I continued to seize. I remember Steve opening the car door once we were in our driveway and asking me what he could do, what did I need? Somehow I blurted out that the frozen food, now thawed, needed to go in the freezer. My eyes were open, my eyes pulled closed then they were open again. My left arm was already useless then my right arm fell lifeless off my lap and into the space near the seat belt and out the open door of the truck. The cool spring air blew over me and I was simultaneously chilled, re-awakened, and glad for my choice to wear flannel-lined jeans. The jeans kept me warm. Steve left my door open as he unpacked the groceries. The tears flowed and my face became a mess with snot and tears. It all burned on the skin of my face: another hypersensitivity anomaly. My mind moved in slow-motion, desperately trying to assess the situation, this medical crisis, from every possible angle. Most importantly I begged the question in my mind: how the hell do I make this nightmare stop! I prayed.
Many minutes passed. I couldn’t hold up my head any longer. It fell forward creating even more of a neck strain and worry about how I was going to continue to breathe let alone deal with the increased pain that would surely follow. I now have pain medications to take for specific symptoms but my liver enzymes are elevated. I have been cautious to only take a drug when absolutely necessary. The only “alternative” method that works is icing so I do that every night. But in that moment I couldn’t do anything but try to keep breathing and hope Steve didn’t accidentally close the door on my ankle dangling off the side of the floor board, out the door. I prayed some more. I always do in these moments, pleading for the Lord’s mercy. As during many times before, I asked for wisdom even on how to wipe my nose to stop the burning feeling on my upper lip. Maybe I could twist my torso in an attempt to reach my arm to wipe my face with my sleeve? I thought it was the last bastion of function left in my battered frame. Big mistake. The episode ramped up to a whole new level of hell as my torso extended, twisted and writhed to the left, sliding me off the backrest of the passenger’s seat AGAIN and into the space between the front seats. My head hung overstretched into the backside of the driver’s seat. I couldn’t stop it. Any of it. This new neck injury further crushed my spirits. And all I could do was hold on and try to breathe some more . . .
For those of you trying to do an armchair diagnostic workup at this point in my story, please stop. Thank you for your care and concern. I’ve seen the best medical providers in the country and completed all of their recommendations. And here I am. My own research led by the Lord and all I have learned from these professionals has brought me the most effective improvements overall. Please just pray for me and Steve. The Lord knows.
Eventually my beaten frame settled back into the front passenger’s seat and I was able to open my eyes, to breathe somewhat freely again albeit labored. I searched my frame and shifted my torso for signs of life in my limbs. Could I move my arms and legs yet? At this point probably 45 minutes had passed since the episode had begun. Steve had asked twice if I wanted him to carry me into the house. I couldn’t reply. My thoughts went elsewhere. I was aware of what was happening and the circumstances leading up to them yet not sure enough of the reason why Steve was late; I didn’t want him touching me just yet. I needed him but didn’t want his help. I was upset at so many levels and my remaining shred of personal dignity required me to find my own way to get into the house. I reviewed the steps over and over in my mind of how to ambulate into the garage, what I could use for support, how to disrobe for a shower, then how to wash off any mold residue on me into the cleansing comfort of a long, warm shower. By the grace of God I was able to advance my left leg by dragging it as I pulled myself out of the truck, limped into the garage then house, drag my dead leg down the hall, and get into the shower. I was so very weak. The pain was excruciating throughout my beaten frame. What is going on? I thought I was getting better? I had endured several mold hits in April in Florida and yes, had some minor episodes but NOTHING LIKE THIS ONE!!! Perhaps my seizure threshold had gone way down with the repeated exposures during that trip. WTF? This far down? I don’t get it. Eventually I lost it and could not hold back my angst any longer. No matter how many incidents like this we endure, each one is difficult for both of us and traumatizing for me. Please pray for us. This serious illness is really, really hard for both of us to live with, to try to live around.
Another thing is as clear for me that Friday as it was in 2013: I will endure whatever it takes to fulfill the purpose the Lord has for my life, no matter the level of suffering or loss, no matter what it takes. Each major “hit” like the one shared above challenges everything I know about life and death, love and hate, Divine Providence vs self-determination, the Lord’s provision, the economy of time in our finite lifetimes, and the question about where the heck did my serenity go if it can leave so quickly? At times of crisis I am ready to run away. Then wonder where would I go? We take ourselves with us when we run away, which includes virtually all of our problems with us wherever we land. It’s like the yellow felt banner painted in purple letters in the office of a counselor I knew in 1983 that read, “Bloom where you are planted.” Funny to recall this now. That was long before I would ever get into gardening. But even back then it was decades into living through the tragic hardships of my childhood and young adulthood. I did try to run away from my problems at home after I finished college. Turns out about a year and one-half later after I moved out of State I realized that I had taken most of them with me! The dysfunctional dynamics of my biological family were reflected in the relationships that filled my “new life” 300 miles away. How is that even possible? So much seemingly had changed. I took the geographical cure, right? Wrong. That’s just the way it works when you “do what it takes” to try to improve your life without first surrendering those dreams to the Lord, Jesus Christ. He knows the desires of your heart and has a Diving plan for our lives. Flash forward about 4 decades and He has fulfilled more of those dreams for me than I could have ever imagined. My life is better overall than I ever dreamed could be. I didn’t know Jesus back then. I know Jesus now. And life is still really hard at times.
To do whatever it takes to stop wretched convulsive episodes is not the most important task in the overall view of my life. Friday night I was in survival mode. I/we did whatever we had to do to get through it and will do the same to deal with the aftermath. Perhaps you get what survival mode is like? Sometimes we must focus on the task directly in front of us and simply HOLD ON. We have to make the hard decisions to cut the cancer out, end the abusive relationship, quit the job that puts our professional license in jeopardy, sacrifice resources usually spent on pleasures for medication or emergency food supplies instead, and move out of state to find yourself, to find Jesus. When those decisions are rendered unto the Lord, He will bless them and ultimately use them for His glory. We will be fulfilled beyond our wildest dreams. The pain of the suffering will diminish while the lasting joy of walking everyday with the Lord magnifies. And when we need to grieve, crash on our bed of sickness, the Lord Himself will meet us there in a tender embrace. He did that for me today at 3:30 in the morning on the day I described above. I had almost built that wall between Steve and I in my heart that we faced in 2013. I was ready to run away again or worse. The pain of the incident that Friday, the trauma of what had happened AGAIN, the loss of nearly 2 days afterwards trying to recover/manage the physical and emotional hurt, the burden of tasks not completed, and the lack of clarity of what to do from there are all just too much to bear alone. But I do know from past experience that I can separate my feelings from my faith. My faith is stronger. My trust in the Lord has been built over many tragedies that I have been entrusted to endure. Yes, it’s a kind of stewardship. What will I do with what has been ordained for my life, the good, the bad, and the ugly? Perhaps I will know someday.
With weakness I shall go forth. With a once baby faith that now roars like a lion I will trust that the Lord will lead me, give me what I need to live. It’s only in His strength that I have gotten through thousands of episodes just like the one described many times at Hope Beyond; any one of them could have killed me but didn’t. I survived. And having said that Gentle Reader, I will thrive from this day forward as unto the Lord. It just looks and feels a little different than it may look and feel for someone else, perhaps for you. Keep looking to the face of Jesus, little Julie. Keep looking at Him. You too Gentle Reader. We can do this if we but follow Him. It will all make sense one day. He promised. JJ
P.S. Steve and I worked things out. It was hard. We did it. Some better days followed and for that we are grateful. We are grateful for so very much . . .
Said goodbye to a group I started on Facebook that grew to well over 3,000 people, my Co-Admin and I helping them with mercury toxicity as best as we can. My leave-taking occurred over a period of weeks and ended yesterday. It was time to free up some energy for other projects. Still, you have meant so much to me.
Experiencing fewer serious convulsive episodes lately after embarking on aggressive treatment for systemic Candida albicans plus flares of herpes simplex, and herpes zoster. The ramp up was very difficult yet, coupled with another treatment for a chronic MARCONs infection in my sinuses, it appears the body burden of infection is going down. Along with it there are at least 2 days every week for the past 5 weeks without convulsive episodes or tics! Only one severe episode every 5 days! Having more moments of relative freedom means so much to me after 9 years trapped in a prison cell with fear-of-episodes: avoiding triggers seemingly present in every aspect of living. Thousands of convulsive episodes nearly destroyed my health, my life. Now the the beatings have lifted some.
Simple changes in the timing of compounded hormone creams coupled with specific pharmaceutical grade supplements to help regulate cortisol levels took about a month to affect my sleep-wake cycle. This all came together rather casually when my Family Doctor reviewed the treatments of my Integrative Medicine Doctor. Both of them contributed to a significant change and so did I. I ventured out to find yet another recommended supplement and braved taking it when literally hundreds of treatments in the past have resulted in disaster. The Lord guided me in tweaking the dosing. And now most nights I sleep at least 5 hours during the normal time of night. This means so much to Steve and me.
A quagmire of new dental issues furthered my belief that not much in the medical realm is simple for me anymore. A simple cavity took a total of 4 dental visits to resolve, 2 with conscious sedation and all with considerable suffering, serious side effects. The latter included another flare-up of shingles! But now the insurance coverage for ongoing treatment of HHV1 and HHV3 is better and I am tolerating the dosing most of the time. So what if I have to soak the dye off of the tablet so it doesn’t cause a headache. I digress. PTL, He helped me figure it out. After my mouth fully heals and I can return to regular wearing of my specialized dental appliance, I should be stable once again. No more pureed or chopped food. To be stable means a lot to me.
The diagnosis of Occipital Neuralgia dovetailed multiple cranial nerve issues (vagus, trigeminal, glossopharygeal) that result in convulsive episodes. This discovery has led to new treatment strategies that work for me. No, it’s not fun to sleep with an ice wrap around my head at night but if it largely prevents a seizure attack episode falling asleep then I WILL DO IT! Nerve block injections tomorrow have the possibility of confirming this dynamic. It means so much to me to have tools to help my symptoms, to lessen my suffering. Very sparing use of new medications has rescued me on my worst days. Over the past 5 months, it only took a failed visit to the Cleveland Clinic and four visits to the professionals at a local pain management clinic that actually listen to me to figure it all out. At long last, I’ve got tools that work to lessen pain! Less pain means fewer convulsive episodes. Who knew?
The difference between my self esteem getting bruised from chronic illness and graciously seeing the Lord’s hand in delivering me from the hardest parts of chronic illness often lies in the hands of nurses at various medical facilities. They run these places. When a nurse actually delivers care and not just a procedure or worse yet ABUSE, I can endure much. The nurse who shamed me, blamed me for things things at the infusion clinic yesterday that were not my responsibility was out of line. I wept once they pulled the curtain to start my IV fluids. I left there in a weakened state albeit made worse with the needle-stick pain of the Huber needle coming out of the infusa-port in my chest wall. I sat in an outer lobby and cried again before emotionally limping as I left the building to come home. I really hate this stuff. I don’t want to be there. Insurance changes then other problems required me to return to a hospital setting instead of continuing in home health. You have to do what they tell you to do much of the time no matter what it means to you.
We have come into a time of year that means the most to me. It’s springtime. The temperature outside is in the 50s and it’s the same to me as a warm sunny day if I can get dirt underneath my fingernails in a garden. Less severe illness symptoms parts of days a couple of days per week means that I can push myself to do more than my basic self care. And so I have. No one needs to counsel or push me to get up and get moving. If I feel better, activity follows. I don’t want to be sick anymore. I’ve learned a lot but never “got anything” out of being sick. I hate and hated being sick but it happened anyways. The Lord has seen me through it all and is leading me into some new projects. These activities stretch me greatly and increase my pain level temporarily. They also increase my interaction with other people, strengthen my broken body, stimulate my mental capacity, and add value to our home and hopefully the lives of others too. By the grace of God I have earned the title of Extension Master Gardner. By the grace of God he has called me to serve others with these abilities so I have chosen to step out in faith by hosting some community gardening classes and even repairs in our own landscape. Sometimes I have to take things an hour at a time. Steve helps, thankfully! I actually get to check things off of my To Do list! Praise the Lord!
We have no idea what tomorrow will bring nor how long it will stick around. When it’s bad news we all go through a process of questioning: why me? why now? What am I supposed to do to get rid of this or perhaps worse yet, deal with this? I submit to you that the only Person to ask these questions to is the Author of life, the Lord, Jesus Christ. He is the beginning and the end, all that the heart seeks to be fulfilled despite living in a fallen, satanic world. He has a plan and a purpose for each of our lives. Every detail matters and is ordained in His crafting of our days, the days of the entire world and its people. You matter. I matter. And that worth does not change based upon our circumstances, thoughts, or other people. No one wearing a badge can take away your ordained purpose on this earth, on this side of the grave. Even if you die, your life will have made an impact somewhere to someone. And if you believe in the sacrifice of Jesus Christ on the Cross, you will live on in paradise where everything is perfect, well, good, and beautiful. Thankfully we get glimpses of heaven here on earth, especially in the garden where His fingerprints color the fauna around us.
One of the most compelling truths I have learned enduring serious illness for nearly a decade is to walk softly when considering the hardest questions of life. Nothing is wasted in a life surrendered to the Lord, a life redeemed by the Lord. Everything will be alright in due time. We can bear way more than we think we can. We pray for the Lord to help us when we cannot see or trust, when the pain is too great. He will bless us. And further there is always something for which to be grateful. Even during a pandemic. Even during tyrannical events in society. Even when our relationships or health or finances suffer a seemingly fatal blow. We are not dead yet! We are also never alone. If we but walk softly as we consider the days of our lives then in due time, our precious Savior will reveal Himself to us. The seizure of our spirits will not last forever, Gentle Reader. One day we will know what it means to be truly free. JJ
Tears filled my eyes and grief my thoughts as I heard the words of a healthcare provider actually address my pain. Again. A few of her first recommendations for me seemed too risky so she called me back into the office to review my plan of care in-person. The insurance company denied a CT scan at this stage; I was exasperated. I had so much hope for relief. At least one of the tools the PA recommended during the first visit actually ended a migraine that had rendered me useless about a week ago. And this past Friday, she offered two more tools for my care. Really? There are more things to try?
For the second time visiting their office, I was overcome with the grief and traumas of my journey through serious illness. No one had looked closely at the role of headaches in the daily convulsive episodes that have created much suffering for me for NINE YEARS. Only 2 months ago I finally realized that many of the headaches are migraines. The so-called experts at the Headache Clinic at a regional medical center recently discounted me, told me to breathe deeply, and sent me off in a direction already worn from false starts in the past. The burden of suffering through many traumatic incidents recounted in this blog came rushing back like a movie fast forwarding through a person’s life when she is drowning. Yeah, there have been a couple of near-death experiences as well.
The PA stayed with me as I wept. The Medical Assistant gave me all of the time I needed to gather my composure before leaving their office. I’d had TWO HOURS of sleep in the last day! My sunglasses and the required face mask covered my sullen eyes, tear-stained cheeks, and swollen sinuses as I prepared to leave much later after my appointment had ended. It took another 30 minutes sitting in my vehicle replenishing my soul before I could re-gather my strength to drive again.
A friend has been tough to reach by phone lately including earlier that same day. I called her again. No answer. She had wept on the phone that she was very, very sick and losing weight; she didn’t know what she was going to do. This sounded more serious than when I first met her about 2 years ago through a shared healthcare provider. G was already severely underweight. Her father died then her mother died, they sold her childhood home, then her husband died all within the past year. She has only been a widow for 3 months. Her grief must be tremendous so it’s no surprise to me that she is struggling so. I called her son for the first time since he and G were at our home 2 years ago. How is your Mom doing? We talked for awhile and he asked if I could try to visit her. I was already on the same side of town where she lived and was thinking the same thing. I often called her to go for a walk together when appointments took me near her neighborhood. Of course I would.
My hubby and I have become snobs of olive oil. Once you taste the best varieties shipped directly from Italy to a local business that specializes in olive oil, you might never go back to the store bought varieties! I consider it a healthcare product, like taking a pharmaceutical grade supplement vs a brand off the shelf of a local grocery store. It really makes a difference! Olive Twist was between the medical office and G’s home so off I went to return our used bottles and pick up our tasty treasures. For some reason I felt led to pick up an extra bottle so I did. We do go through it rather quickly.
I caught up with G while she was out on a walk through her neighborhood. This is quite an accomplishment for someone who sounded next to death and in light of the sub-zero temperatures and icy streets in the neighborhood. To take a walk was her favorite thing to do. “Hey lady, whatcha doing out here in the cold?” I parked the truck at her house and braced myself to meet up with her out on those icy streets myself. The hug felt good for both of us when I reached her.
A couple of things transpired in the next hour that prompted me to write today. By the time our visit was ended, G had confided that the best tool she had to calm her upset digestive system was various types of vegetable oils. Little did she know that she would find a bottle of the best olive oil available locally sitting next to her front door by the time we got back to her house! The Lord knew your need G. And the Lord provided for it to be met on Friday. But that’s not all.
This time when G shared her fears, medical worries, “physical” feelings, and isolation over and over again (unlike our more newsy conversations just prior to Christmas), I felt led to ask her about her “emotional” feelings. Sad. Hopeless. Afraid. “I just don’t know what I am going to do?” she vented. Then we heard the wail of a freight train racing by her rather swanky neighborhood. Somewhere beyond the golf course and frigid air between us, inspired only by the Holy Spirit, came to me the themes of the Fact-Faith-Feeling train of the Four Spiritual Laws booklet. This booklet describes the gift of salvation offered to everyone through belief in the sacrifice on the Cross of our Lord, Jesus Christ. The caboose holds our feelings. The passenger car holds our beliefs, our trust. The engine embodies the Lord, Jesus Christ who leads and even pulls the train along when we surrender ourselves, our caboose and put our trust in Him. She wanted this free gift. She got it. Her spiritual birthday began with a simple prayer on her front porch that day. Praise the Lord!
We prayed again before I left. When I looked into her eyes afterwards, there were tears staining her face. She had told me when we were walking that she wasn’t even able to cry lately. She felt the feelings but the tears just would not come. I said to her, “G your cheeks are wet. Feel your face.” And with a muttering of how good our God is and how much He loves her, it was time for me to leave. There was nothing left to say, nothing left to do. The Lord had both of us in the palm of His hand that afternoon and will continue to do so from this day forward. I drove home with renewed hope and strength then slept a very long time over the next day.
Never, ever lose hope Gentle Reader. Our Divine Lord and Savior, Jesus Christ is there with us in every single detail of our lives just waiting for us to cry out to Him. He cried drops of blood for our suffering. His plan of salvation turns death into life. The Divine in due time covers all. JJ