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!

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

DF-09134 Nativity , May 18, 2006 Photo by Jaimie Trueblood/newline.wireimage.com To license this image (9139053), contact NewLine: U.S. +1-212-686-8900 / U.K. +44-207 659 2815 / Australia +61-2-8262-9222 / Japan: +81-3-5464-7020 +1 212-686-8901 (fax) info@wireimage.com (e-mail) NewLine.wireimage.com (web site)

When you are afraid of everything

Every once in awhile I emerge from the fog of battling serious, ongoing illness and realize that the way I view the world is not the same as that of others around me. I am often afraid of everything!

Folks are dressing up for special Christmas celebrations and with it comes perfumes, colognes, hair spray, and lots of pretty/smelly stuff. I just practice what I call a “virtual hug” during greetings and keep my distance from any close contact where something might rub off on me. It’s awkward but works better than being triggered.

Venture out to a social gathering and I’ll wonder what particulate matter rests in both the upholstered seat upon which I am sitting or the coat that the person next to me is wearing. The mycotoxins from mold persist forever and easily transfer from one cloth surface to another. How many of us have our winter coats dry cleaned each year or launder them? Our vehicles and outerwear can carry with them the toxins from anywhere we have visited in the past. Some items simply cannot be cleaned of these toxins. And even if they can be cleaned, who else but another “mold avoider” uses anti-fungal agents like we do when washing clothing? Or tosses coats in the dryer under the sanitize cycle before putting them back into the closet or wearing them again? Probably nobody I know!

We brought a nasty scent home with us inside our new-to-us truck, from a recent trip. The sour smell is from a water-damaged building where any contact has the potential to trigger a violent convulsive episode. Maybe this low level of exposure that remains will somehow de-sensitize me to this type of mold? Yeah, right. The portable ozone machine that we really can’t afford right now, came in the mail from Amazon today. I’m going to try to zap that stinky smell out of there soon and hope that the remaining fragrance in there from the dealership goes with it. Cleaning, vacuuming, essential oils, charcoal packs, or baking soda haven’t worked on the latter. Driving with the window slightly open hasn’t been enough to ward off fatigue and the risk of pre-tic symptoms when I am in there. I need to drive to medical appointments. We will fix this soon, Lord willing.

Sharp, loud noises have become an instant trigger again and quite a nuisance. Twice in the past 10 days, my husband initiated an innocent action that resulted in a high-pitched, short, loud “olfactory stimulus.” Immediately I felt my ear drum move inward and a convulsive episode ramped up quickly thereafter. These are really bad. One happened last weekend as I was riding home with my beloved from a sweet date viewing Christmas lights, listening to music on the radio coordinated with each display. I could barely open my eyes for the last display as the head-banging had not yet subsided; my biggest fear was that the hand I struggled to push near my head wouldn’t adequately stabilize the wrenching of my head/neck. Steve fed me a rescue remedy when we got home while I still sat in the frigid air on the passenger seat of our truck. My left leg dragged as he was eventually able to guide me into the house (with me struggling yet determined to try and walk under my own power and not be carried). We removed my outer layers of clothing in case the scent of the truck was on them; I crashed into bed and slept for over four hours. I woke up in the middle of the night very hungry, ate a very late dinner of sorts, and was not able to sleep again until after sunrise. The new day was trashed. We had already cancelled attending the Holiday Pops concert downtown to avoid loud music. But I love Christmas decorations and music! This really sucks man.

Everywhere from public restrooms to the open door of a neighbor’s home exudes air fresheners these days. A package of new neighbor was accidentally delivered to our home so I thought, neat, I’ll take it over and get to meet them. A waif of something fragrant washed over me as soon as the sweet gal opened the door; “c’mon in!” she offered in a friendly tone. A quick, I can’t due to sensitivities nearly killed that friendly encounter. Fortunately the late fall day was a little milder and she didn’t mind chatting on her front entryway outside of her home. Sigh.

I would LOVE to invite all of our new neighbors over to get acquainted later this Winter. We did this very thing with our neighbors before I got sick and it was a sweet time of fellowship. FOUR of the eight homeowners have turned over in our neighborhood court in which we live. Someone needs to organize a get-together and I wish it could be me and my hubby! I simply cannot do that. I’ll have to wait until the warmer weather comes and we can sit outside on our patio. I guess that’s alright too . . . five months from now when the weather thaws and warms.

We still practice a relatively high level of extreme avoidance that is getting OLD after all these years. Perhaps progress on treating a particular type of sinus infection will reduce my sensitivities. Let’s repair that blood-brain barrier already! I am grateful that I can finally treat the chronic MARCoNS infection that is characteristic of biotoxin illness. This makes me hopeful that maybe more than the olfactory cranial nerves will heal as well. Over time, of course. More time. The trigeminal nerve that gives rise to TMJ pain and had triggered episodes has already healed quite a bit with my specialized dental appliances from a craniomandibular specialist.

These are only a few of the examples of how chemical sensitivity, mold sensitivity, Chronic Inflammatory Response Syndrome (CIRS) play out in a person’s life. Gene expression gets turned on for persons with particular HLA types for mold illness, contributing to abnormal responses to everyday sensory stimuli. Turning it off or lowering it requires removal and avoidance of triggers, various types of testing (home/work/school environment then specific lab testing), dietary changes, and a hierarchy of expensive treatment protocols. I am grateful that not only am I able to tolerate a complex combination of nasal treatments, there are fewer food triggers of symptoms now than in the past. Some of the labs used to diagnose CIRS have normalized or are only slightly elevated. My local Functional Medicine Doctor versed in these protocols will re-test me for MARCoNs early next year. I am hopeful that I can finally clear this infection; the sinus headaches have already subsided. (This Doc is so very nice to me as well! Love that!) The laundry list of other medical conditions that has come alongside this nightmare are not nearly as disabling as CIRS. I never lose hope that many can get better or even be cured this side of heaven, Lord willing.

When you are afraid of everything, it is really really hard to want to try new things, meet new people, or go to new places. My confidence in virtually every aspect of living has suffered. Expertise, proficiency, and tolerance for the work environment of my profession of occupational therapy have eroded and I am not sure that I will ever be able to get it back (or even tolerate working with all of the potential exposures of a clinical setting). Indeed I have developed new skills during this period of time and you are reading one of them right now. I am grateful to have designed several websites and am the editor/assistant editor of 2 publications. Medical research has become a necessary pursuit. These are worth something I suppose and can be done in the middle of the night when needed. Gardening has sustained me throughout these 8 years of battling a serious illness and 6 of them with biotoxin illness in particular. Sometimes I am taking care of our yard or a public rain garden after dark when I feel better but hey, that’s what flashlights are for, right?

Perhaps I need to re-read John Maxwell’s book entitled, Failing Forward. While this time in my life is not my failure per se, the effect of repeated trials and traumas is very similar. Better pull it out again. In life, the opposite of fear is courage and perseverance is a requirement to succeed thereafter. Somehow I do although this has been one of my greatest challenges when feeling like a beaten puppy. Further, some would say that the opposite of fear is love as in the perfect love that comes only from our Lord and Savior, Jesus Christ. For if we truly know His love then nothing in this world can separate us from it, including the powerful tool of fear, fear of failure, fear that things will not change, fear that we are alone to suffer, and so on. The truth is that those in Christ will never again be alone, the same again, or away from the Divine plan and purpose He has for our lives. Knowing this truth brings not only courage to go on but hope. And my Jesus’ love and care has helped me move forward to even get to this day, to think that one day even if it’s in heaven, all will be made new, right, and good. That’s the kind of love in action that obliterates fear.

Sigh. I’m tired tonight. The shingles is healing. Some medical questions are now answered resulting in closing some doors and leaving others precariously open. I’ll need to meditate on these topics some more. Still, I think I have a better perspective, more hope than when I started writing to you, Gentle Reader. Do you deal with fear too? JJ

You just don’t know what you don’t know

I’ve got 2! How about you? Ugh.

When I was ruminating about how to manage some new symptoms, I stumbled upon the benefits of unsweetened bitter herbs in balancing blood sugars. This discovery has helped manage some wild fluctuations but it is not a fail-proof strategy. I still bottomed out yesterday with seizure attacks at the kitchen table about an hour after following this new sequence. My beloved had to feed me while I shook, leaning precariously on our glass dining room table. It hurt. This situation is still hell.

It’s clearer more now than ever before that the swinging of my blood glucose levels is contributing to seizure attack episodes and the difficulty managing both of them. The endoscopy ultrasound (EUS) this past week found a particular type of pancreatic cyst, pre-cancerous but one in which surgery is not currently recommended. So while I grasp the magnitude of what a 6-month surveillance program looks like for the potentially deadliest of cancers, I am dealing with yet another new diagnosis: pre-diabetes. Say what? Tis much to bear right now.

I’ve spent most of my adult life managing “borderline hypoglycemia” with diet. This means no concentrated sweets, higher fiber foods, protein-rich snacks between meals and only low-sugar fruits with the baseline concerns of dairy-free, gluten-free, low-medium oxalate, largely organic/non-GMO, and lower in the categories of red meat and night shades. Whew. It’s a miracle that I have found anything to eat at all! Or that I have not gained a ton of weight when battling serious illness these past 8 years. Food is fuel and there are now more specialized products on the market from which to choose. Thank you Lord! “They say” that hypoglycemia can turn into diabetes sometime in a person’s life. I also understand that pre-D can be reversible with lifestyle changes. O.k., so let’s go for that option.

Still I have come to the end of my ability to figure out what to do now. The Docs say that the pancreatic cyst, even though it’s in the organ that manages blood sugar for the body via insulin and glucagon, has little to do with blood sugar difficulties per se. Full blown diabetes is associated with a greater risk of cancer when you have a pancreatic cyst. What about pre-diabetes? “I can refer you to a dietitian if you like,” said the Nurse Practitioner in the gastroenterology oncology department. Why sure! What else have you got that I haven’t tried already folks? Exogenous ketone supplements without the sweeteners? I’m on it, however even the ketogenic diet under the direction of a hospital dietitian didn’t help me two years ago. Too much fat these days triggers belly pain anyways. Tough challenge for sure. Referral is now pending.

Call me cynical because I am. I am in shock. Thankfully there are Facebook and online support systems, even apps for these diagnoses so I will avail myself to them. The isolation of being home alone dealing with all of this is crushing however. I tried leaving the house the day before the EUS procedure to get some errands done and came home really messed up. I always carry a lunch bag of special foods and water with me when I leave the house. And now it’s just not enough. I’ve reached out to my Doctors at Mayo Clinic to see if there is more expertise out there on these matters, particularly in connection to the seizure-like episodes. I cannot get into see an endocrinologist locally until JANUARY!

I just don’t know what I don’t know right now. Are you working Your plans somehow through all of this my precious Lord? Help me Lord! JJ

P.S. My new favorite snack is Hippeas Himalayan Happiness

HIPPEAS Organic Chickpea Puffs + Himalayan Happiness | 4 oz, 6Count | Vegan, Gluten-Free, Crunchy, Protein Snacks

More arrows pointing at a target

Seems like there are more arrows pointing at the same target this time, but will the archer get it right? You know, the one in the white coat with the big degrees, fancy knowledge, and ticking watch?

doctor, stethoscope, diagnosis, pancreatic cyst, EUS, endoscopy ultrasound, insulinoma

Too bad that it was me and not one of them that pointed out that the pancreatic cyst mentioned on the CT report still needed some kind of follow-up! But maybe it’s alright that things happened in the order in which they did? At least my 32 year relationship with thyroid medication has ended and removed one more factor in an equally puzzling dance with hypoglycemia.

Peripheral neuropathy, heart disease, hypoglycemia, insulin resistance, pain, nausea, and a pancreatic cyst were all written down but no one put them together in the same story until I brought the report to my Doctor on September 11th. Let’s add daily seizure attacks for 7 1/2 years shall we? You know, the ones that we recently discovered can go away sometimes with a blast of sugar? The glucose monitor doesn’t scream answers yet as to why this occurs and how to manage it, try as I do, but some other labs are finally leaving clues.

An MRI and MRCP are behind me and an endoscopy ultrasound (EUS) shall commence but not a 72-hour fasting blood test (used to diagnose a particular type of pancreatic mass associated with hypoglycemia). Oh well. We opted for the local specialist to evaluate me but he only does the former test not the latter. I just hope it wasn’t a mistake NOT to return to the Mayo Clinic and the Pancreatic Clinic this past week. Travelling there is a big deal and trying to get home after procedures is a bear dontcha know.

I’ll try not to ruminate about the potential for pancreatic cancer and hope that this miraculous little finding is ordained by God for a time such as this, to point the new “archer” to a cure for my worst symptom. Who knew that these days when you have hypoglycemia they look for a cause? Decades ago the medical folks just had me eat small meals of particular food combinations; “it may or may not turn into diabetes someday” they said. Similarly I have seen just this year how medical treatment protocols change! Yes, thyroid nodules have not been treated with medication since the protocol changed in 1986! The researcher of that study turned out to be my endocrinologist at Mayo Clinic in March, starting me out on a plan of action that ultimately calmed my fried nerves, weakening bones!

Keep your eye on the ball I keep telling myself. One step at a time: live around the nausea, pain, and increasingly unpredictable convulsive episodes. Figure out what to eat. Cancel plans with your husband and stay home where it’s safe. Yuck! Venture out when you can regardless of how you feel. Keep up with the IV fluids every 2 weeks and take 2 cherries before bed in case the sugar spike prevents the episodes that meet you there every night. Then try to sleep knowing that the tempest beast who has ravaged your neck and back and head thousands of times before is lurking before you fitfully pass out by morning . . .

This hell. The joy is gone. And yet as I have stated to myself before in the words of Moody Church pastor Erwin Luitzer, “when going through hell, don’t stop.” Count your blessings including some new ones here at home; embrace your beloved hubby dear who loves you so. Dwell in the presence of your Savior. Reach out to friends in Christ. Talk to Jesus . . . He is here right now, back there, and out there too.

Twelve more days will have passed and chemically-induced rest for the EUS will be here soon enough. You got this! JJ