I'm not going to lie

Just when you think you have figured something out, it’s really maddening to realize that there is more to know and you simply are clueless!

laxative, medical humor, gallows humor, Lyme disease, chronic lyme, catamenial seizures, non-epileptic seizures, coping with illness, chronic illness Hope Beyone

Hi, my name is Julie and I am the reluctant writer behind this blog after I got sick on October 11, 2011 and never recovered. I started my journey here online in August of 2012 after reading the blogs of 2 acquaintances. Journaling had been a life-long practice of mine, beginning with a diary that I wrote as a girl. The cover was shiny and flowery in white, pinks and reds. It had a little flap over the edge of the pages that I could lock with a tiny key. That still wasn’t enough to keep out my brother, Mike, to my horror! I don’t recall what I wrote but I do recall that he teased me mercilessly just the same. After that I got better at hiding my private things.

Flash forward many dozen years and the trend these days is to pour your heart out in a blog to the watchful eyes of the world. Just when you think that no one really cares about your stubbed toe or smashed fender, you realize that some stealth follower from another part of the world relates and responds to you in kind. I find it a kinda special occurrence and a reminder of our shared humanity. Still there are some topics better left untouched and facts left unsaid of course!

Be careful in sharing good news. If you are disabled, the government might use your day of reprieve as evidence against you that your life is restored when clearly it is not. That examiner probably won’t read the hundreds of other blog entries that describe some personal hell of one type or another. Like the convulsive episode I had this afternoon that yielded only after a prescription intervention, followed by a 5-hour nap. Or the second seizure attack a couple of hours later that yielded only after another type of remedy that actually worked this time. Thank the Lord that my beloved was home and willing to help me. I am grateful. And it all came just hours after helping our local Park while sitting here alone through the night to update their website: a good thingy!

If you happen to have dysfunctional family members or friends reading your blog then there might be entirely different consequences to complaining about blah, blah, blah over and over again. To this person I say well then don’t read my blog or (limited) Facebook posts honey! How about minding your own business a little more? Isn’t keeping a positive attitude, getting up in the morning, saving enough money in the bank for emergencies, and the like hard enough to manage these days than to meddle in someone else’s daily drama too? Do you really think I would fake this hell for self aggrandizement? I am not that kind of a sick puppy lady! You’ve got it all backwards. I’d rather remain anonymous or conversely, receive recognition for an admirable accomplishment. Like raising a rank as a Master Gardener largely from publishing our county’s newsletter in the middle of the night. Or volunteering in a public garden despite the heat exhaustion that came alongside many of the hours out there. And it all came on the hundreds of days each year when I did not have to crash back into bed, unable to function normally. Got it?

So where does a thyroid biopsy to rule out cancer fit into this muddied scenario? Will having major surgery thereafter legitimize my enduring serious illness and the varying opinions of persons on the sidelines cheering at times or throwing barbs at others? Nope. Others simply give witness to your life for the parts that he or she can see, to the extent that he or she can step outside of his or her own story. And none of us can do that fully. The peeps who truly love you will come closer to a sense of understanding. That is a gift for sure. However, it is only in a personal relationship with the Lord, Jesus Christ, in a life surrendered to Him that you will feel completely validated, loved, understood, accepted, and forgiven. He created you and ordains all that you are, what happens, when your life begins, and when your life will end. All for a purpose greater than anyone else will ever know. Lord willing, He will grant you insight into some of your life’s meaning along the journey and be merciful. He loves you so!

I’m not going to lie. Everything from what other people have thought and will think about me to questioning the Lord’s plan for my life is smeared across a messy collection of hundreds of blogs over these 8 years of chronic illness. Will it be cancer on top of everything else? Cancer: the one diagnosis that suddenly legitimizes one’s fears and suffering and need for compassion? So what. This stuff could really mess with my head. But what is really going on inside my mind? Not that much really. I feel like my Jesus is simply carrying me through it all. I feel numb inside and out. Often my thoughts are blank. When the tears come they are shallow, like a reservoir running dry after years of siphoning off for this trauma or that one. There’s not much left in my fuel tank. With no catharsis left for my angst, one might wonder who or what will nourish me now?

The answer would have to be the Lord Himself. Hold me please. I hereby place my journals, my blog, my illness, my life in your lap. Cover the Gentle Readers out there with your loving care too. Send forth your angels and Holy Spirit to care for, to guide us all. This is a tough world to live in these days. The suffering of your saints is great. We need you NOW!

That was quick!

If we ever get the answers to the questions why, why me, or why not then we will truly have arrived in a place of peace. Will it ever be this side of heaven?

This side of heaven, life moves quite quickly. The agonizing wait for a package to arrive, bringing the compounded, whizbang elizir to remedy some malady, can be mind-numbing. It’s all you can think about. Then before you know it, you are opening the package and quickly moving on with the other tasks of the day. If only this would apply to a workup to rule out cancer . . .

My days are blurry now yet not without a moment of reflection: largely on how the year we just finished has actually prepared me for the lump that is on my plate right now. Or more accurately, 7 lumps. Ruling out autoimmune disease, being diagnosed with hyperthyroidism then switching back to hypothyroidism, placating the diagnosis of Functional Movement Disorder, ruling out hyperparathyroidism, and narrowly escaping a diagnosis of pancreatic cancer with surveillance puts 2019 on the map for me, so to speak. Every step of the way, my main concern was beyond the testing and treatments glaring on the surface; I was asking if this or that could be a cause of the more important strife in my life: daily convulsive episodes, my worst symptom.

Autoimmunie disease = Episodic Ataxia? Nope.

Hyperthyroidism = Seizure disorder of organic origin? Nope.

Functional Movement Disorder = Rehabilitation to resolve? Nope.

Hyperparathyroidism = calcium trafficking issues? Nope.

Pancreatic mass = insulinoma and blood sugar dysregulation that triggers seizures? Nope.

WTF is it then? Excuse my French and excessive use of metaphors. I am about to go mad and cannot use direct language anymore. How many near-misses can there be? The answer: at least one more.

A thyroid ultrasound just 8 months after one earlier in 2019 found SIX NEW NODULES with suspicious characteristics. Then there’s the hard one in my neck that didn’t go away with the common cold after Christmas. How can this be? Labs don’t lie but they certainly don’t explain this new, worrisome finding. It’s all I can do right now to keep from screaming while I research the good, bad, and ugly possibilities. Looks like at the very least, another Fine Needle Aspiration is indicated and will be completed under conscious sedation due to the seizure attacks that come with needle sticks. My only saving grace in this hot mess is that at least I don’t need to be awake this time when someone in a white coat puts a very long needle in my neck. UBER-EWWWWWWWW!

Someday to preserve the remainder of my sanity, I will list all the treatments, dietary habits, rehabilitation strategies, lifestyle changes, mold avoidance, and medical management that I do because some professional said it would help me. The list is burdensome. And expensive. But nothing compares to this. I have never had major surgery before let alone a bonified diagnosis of cancer. My heart races with the potential implications, my mind numbs the rest of the way after pressing on to complete some volunteer work on the computer, and of course I am hungry . . . again! If only I had taken that walk with the pup when she was whining so loudly this afternoon. I really should have, even in the freezing temps looming out the front door.

I talk to the Lord all the time now. It’s like breathing a prayer all day long. He’s here with me alone at this computer, this I know. Graciously, my beloved is more tender and sweet of late than any day prior in this almost 9 years of battling serious illness. I am so glad for Steve. Life’s skirmishes over here are about to escalate to battle and war. We both can feel it with the data on the ultrasound reports.

My, how quickly things changed. But like Barry Manilow once sang, could this be the magic at last?

Your Action is Needed Now!

Please sign this petition to stop the FDA and government from interfering further in the supplement, alternative health industry. They have already banned several key compounded pharmaceuticals that help tens of thousands of persons like me battling serious illness. What’s next? Organic food? Non-GMO food?

You decide. JJ

FDA Comment

The next day

Getting as much done in a day as I can on good days has been my mantra of late. Make shopping lists organized by store. Prioritize errands and organize them by regions of the moderately-sized city in which we live for best travel efficiency. Put Amazon items on my Wish List for bulk orders about twice per month. Put appointments, key things to do/questions to ask at respective appointments, and errands on the calendar app in my phone so I will always have it with me. Record “to do” items on the calendar as well then just move them to another day when sickness takes over and everything needs to change. Make sure to record the places that I went, dates/duration of major convulsive episodes, start/stopping of new treatments, and aberrations in sleep habits to track this serious illness for trending. Use the note function in the glucose meter when compelled to take blood sugar levels. And stage lists, paperwork/medical orders, supplies, lunch bag, water, etc. by the front door so I don’t forget anything when I can finally get myself out the door. Works for me!

It’s no wonder that I am exhausted after a day with a few appointments and errands completed in this way. Marked fatigue with a difficulty functioning follows even if the first appointment isn’t until after 1:00 pm in the afternoon! Still I would really rather block off parts of days and push through, even if it means sitting in a parking lot somewhere resting between destinations for up to an hour, than to have 1 or 2 commitments every single day of the week. I sit a lot in my truck between destinations: eating a snack, sipping some water, checking my lists or phone calendar, and getting my head together (i.e. if the environment I had just left was ridden with noxious environmental stimuli that is still difficult for my brain to process). All of this completed with some safety measures in place of course.

I figure that I can always rest the next day . . . or the next morning at least. Scheduling my days this way is a form of chronic illness survival, especially when you have to come home, change clothes, shower, and clean everything purchased after every trip. (We still must practice a fair level of extreme avoidance due to my ongoing sensitivities.) Perhaps if I were my own occupational therapist, I might advise a better strategy of energy conservation and pacing. Oh dear, another example of the therapist not following her own advice!

All bets are off as they say, the next day, if there is a major convulsive episode the night beforehand. Appointments get cancelled and re-scheduled. To Do List items get moved to another day. A call is made when I can function, to my hubby-dear to pick up critical items when needed. And if the difficulties last for a few days then I am grateful to be able to use our local grocery store’s shopping and/or delivery services. Sometimes supplements and compounded medications can be sent over in the mail. These are wonderful services that really help on days when I am more home-bound: as recent as 2 weeks ago.

Things are really hard when medical appointments fall two days in a row; these meetings are always stressful for me anyways. Things are equally as hard when illness factors worsen around special occasions and holidays: when things simply cannot be rescheduled. This happened today after a wretched convulsive episode last night. I had planned on preparing a meal and some treats for family members who were visiting and it was all I could do to pray my way through the completion of the project. Gratefully my beloved husband was willing to prepare part of it, but sadly after I awkwardly blurted some speech that was a little too pressured, a little too much reflecting the exhaustion I had not yet yielded to the strength of my Lord’s. I had to apologize. Eventually, I got outside in the milder Winter weather of late and for the first time in the three days that I had hoped to do the same. The Pup and I came home then I finished my tasks (’cause there’s always another thing or two to do before you can sit on the couch for a couple of hours and REST!!!).

Probably a few hours too late to be as effective, I did rest. Even the editing volunteer work on the computer got done. And a whole lot of food got consumed while watching cooking shows on Public Television. (We don’t have cable TV.) Such is life in survival mode I guess. The balancing act begins again tomorrow with a family Christmas gathering at a local cafe. It all reminds me of the Capitol One Bank commercial here in the States where the viking character asks his slain comrade or opponent, “what’s in your wallet?” I always hope that it will be fuller on my next day . . . Tomorrow we shall see! JJ

What’s in Your Wallet?

It's not time yet

While it may be time for celebrating a Christmas holiday, preparing for the new year about to begin, or maybe completing something else on the “to do” list, one thing is for sure: it’s not my time to go yet. But what does it all mean?

Sunday was a particularly difficult day. Taking a particular anti-viral medication in the wake of a return of shingles left me with few options other than continuing it for awhile longer than in the past. I had just sent a message to my Doctor via the patient portal at our local health system asking if he would he extend the prescription? He agreed. But what was I thinking anyways?

Considering it a good idea to add a a supplement that fights viral infections, two days prior I had added a low dose of one about 2 hours after the dose of the prescription medication. That was a BIG MISTAKE. Within the hour I would begin what would become a day and one-half in bed with on-and-off convulsive episodes. Holy cow! Here we go again! Was it die-off? Overdose? Redistribution of toxins from another source other than that which I had intended to target? Who knows?! The result was disastrous. Too bad that the weather was very mild and sunny for a December day; my hopes to get outside and take the pup for a walk were trashed. Hubby went for his 20-mile cycling ride. I had to stay in bed, taking 2-3 hour naps after any activity such as making a meal. Another weekend was LOST to factors of illness.

Perhaps it is exhausting to be battling FOUR infections at the same time? Indeed it is. Yet that is exactly where I find myself: 3 strains of herpes infection (zoster plus the reactivation of EBV and HHV-6) in addition to a MARCoNS sinus infection. Treatment for the latter has included a complexity of rotating nasal sprays and rinses. I was nine days into the treatment of shingles with famcyclovir TID. Yes, shingles had flared up for the third time in as many years, this time with severely itching and burning lesions on my upper back. Increased fatigue was profound. As the days wore on, the convulsive episodes appeared to be coming down again as well as reactivity to sensory stimuli. It seemed like progress. However, this trending did not last beyond that extra dose of an antiviral supplement called Lauricidin.

Evening came and my saint-of-a-husband had already helped me with a couple of rescue remedies in the afternoon. He lain beside me as another episode ramped up, this one more aggressive with guttural utterances that were as frightful as they were embarrassing. Seizure spikes and vocalizations emerge much like vomiting does during the flu. It just comes out of you and there is nothing that you can do about it. One arm shakes repetitively so fast that you think you will either sprain something or fling a hand right off the rest of the extremity into the air . . . then a leg on the opposite side repeats the pattern about 9 inches up off of the bed! Try to cover up to stay warm and just the initiation of movement exacerbates the intensity of the convulsions, sending my body further out of my control. I gasp for air then pant vociferously lest I pass out for a lack of oxygen. Then the pattern cycles again with new, involuntary movements that send my head and neck into spasm, along with great pain. I could not even grab my neck this time to protect myself from further injury. A headache follows every time.

Tears pushed out from my face with weeping when I could breathe more than a couple times in a row. Somehow I blurt out to Steve to please pray. These episodes have appeared demonic more than one time in the past and I sensed that could be the case on Sunday night as well. It was just too frightful to be a simple seizure. Precious Lord, why do I have to be awake and witness this hell, burning it into my memory then try to function sometime later as if everything is alright again with the world when it certainly is not? It’s like an abusive trauma that repeats over and over again so that your spirit never can heal, always remembering, always fearing its return. I may never know the answer to questions that I have asked, researched, prayed over with THOUSANDS of convulsive episodes over 8 years of chronic illness. And grievously, dozens of the episodes have been really dark ones like this one. But only 2 have been true near-death experiences.

My breathing got shallower yet I was not gasping for air anymore. The room was already dark from Steve turning out the light for me to decrease sensory stimuli; my vision was dimming further as I felt my very life closing in on me, my left eye pulling shut on its own. I started to feel as if I was leaving my body and wondered if I would pass out before my breathing would stop altogether? Is this how it works when people die in their sleep? Or does their heart stop beating before they gasp one last time for air? Do they know what is happening and does it terrify them when they cannot stop the train wreck from reaching its fatal impact? Why did I seem so far away in my mind’s eye yet still feel the painful stiffness of my weary frame shoved into the foam topper on the bed?

Somehow I became aware of my beloved lying behind me and blurted out my final goodbye, “I love you Steve.” He replied, “I love you Julie.” It’s all I could say. Then I saw him in front of me. Well not really but in my mind’s eye, I saw the archangel Michael coming for me. He told me to follow him and drew me away from the present tense towards another dimension of space and time. “Follow me,” he repeated. I saw no white lights as the scene was actually rather dim making it difficult to see anything else but the back of his right side as he turned to lead me away somewhere. I didn’t ask where, I just “went.” Then I became aware of another figure. This one did not show me His features but I knew Who it was. It was Jesus. He looked at me for awhile with tenderness yet directness all the same. Time did not stop or move forward . . . it simply was not there. It appeared that some sort of evaluation was going on or maybe it was some sort of test. I had no thoughts. I just waited there before His presence.

Then my Lord spoke. “It’s not time yet.” I wondered in my spirit what He was talking about? I couldn’t process the words. I actually do not recall breathing just then. By this point, Steve had reached his arm around my waist to check if I was still breathing. He would tell me later that he was wondering in this moment if I was going away for good? The seizing had stopped. I had become unusually quiet. And I had stated the phrase that many people say before they take leave from this life: to express their love for the ones in life they hold so dear. I do recall hearing him sniffling. At some point, he got up to blow his nose. I was becoming aware of my surroundings although still engrossed in the encounters I was having: quiet in my spirit, listening submissively, starting to realize how similar the present reality really is to that of an eternal one. THEY ARE ONE AND THE SAME. I had felt myself “leaving” but never felt separate from my body per se. What was happening to me?

Michael led me backwards, fully back into my fragile frame and the place of brokenness where I have spent tens of thousands of hours, there on our bed. I wept deeply. Bitterly. Tenderly. To the point of emptiness. I took inventory of my self, my situation. Where am I now? Let’s see, I am still lying here and yes, still breathing. Steve is still here with me and the room is still dark. I am not convulsing anymore. I am finally warm. My body feels war-torn with pain throbbing from every joint, burning flaring in the tips of my toes and fingers. (That burning is an indication to me that these episodes are a medical crisis yet to be solved as it has a name: peripheral neuropathy. It gets worse during and after episodes.) My mind was too empty, too traumatized or maybe in shock of what I had experienced to say anything aloud. I just had to dwell there with my beloved for many moments before I could re-orient myself to life again. I wasn’t 100% sure that I was back in the world yet.

Finally I asked Steve, “Am I still here?” “Yes,” he said quietly. He would later say how grieved he would be if he had lost me that night. His eyes reddened and we both cried on the inside, me crying all over my face as well. Eventually I asked him if he wanted to know about what I had experienced and he did. He believed my story. Something had stirred in his spirit as well. I believe that is why he reached out to check if I was still breathing. We didn’t and don’t really now how these things work, the Biblical perspective on near-death experiences, nor what it all meant for our lives together. Does this mean that I am cured now of the seizures? Did it mean that I would now be free from demonic oppression? Did I really have an encounter with my Lord and Savior, Jesus Christ, or was it some cruel trick by Satan and his minions? If it was a test ordained by God, did I pass?

I crashed into a deep sleep for a couple of hours, even though I had slept or napped most of that day. I woke up in the middle of the night ravenously hungry with gunk in my nose, forcing me to get up to do a nasal treatment and make some food. By the time I was done with all of that, I was wide awake and it would take hours for me to get back to sleep. Too soon I would need to be awake for a medical appointment, some errands, and a visit with the first of Steve’s family now in town for the holidays. How in the world would I do all of that on THREE HOURS OF SLEEP, an ENTIRE WEEKEND OF SEIZURES plus a NEAR-DEATH EXPERIENCE? By the grace of God, of course. And so I did. I made us a fabulous breakfast and did everything I needed to do, albeit loopy and somewhat forgetful in a health food store later that afternoon. It was over 18 hours before I could get back to bed again . . .

I have come to see that time and eternity might not be that different from one another. We measure time with our watches but our Lord measures our hearts within the experiences He ordains for His purposes. I need to reflect and study all of this some more. How I managed to get my errands done plus a short-and-sweet visit with Steve’s family is beyond me, perhaps supernatural. The day after was a mixture of sleep and a return to sickness with a terrible seizure spike right before I was hoping to go to a Christmas Eve church service with Steve and his family. It didn’t happen. Dang. Very sad. One thing has became very clear though: I am done with famcyclovir! My time on that medication is NOW OVER.

The rest lies at the foot of the cross with my Jesus. After all it is Christmas: when we celebrate His victory over death with the miracle of His birth. Maybe there will be a miracle for me too? JJ

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