It’s been a very long time since I shared a personal update on the blog. I’ve written about a wide swath of subjects in my random non-news, stream-of-consciousness posts over time.

I’ve talked about scripture, about prophecy-related news, about politics, I’ve shared my writings, and interacted with readers, who blessed and encouraged and prayed for me. I want to thank you all for that. I look forward to putting faces to names when we get to heaven.

I never paid attention to blog “stats”, other than when getting it up and running, when that serves as sort of a guide for engagement and getting it seen.  I considered the whole endeaver, a “casting of bread upon the water”. Ecclesiastes 11:1 says “Cast your bread upon the waters, for you will find it after many days”.

I’ve spoken about how God takes the broken pieces of life, and makes the most beautiful mosaics. All we feel is the pain, all we see is the mess we have made. One day, He will raise us high above for a birds-eye view, and it will all make sense. He’ll show us what was taking place in the spiritual dimension simultaneous to those trials. I consider it sowing the tears of my sorrows, for whatever God can do with them. You never know what life will spring up, but it’s redeeming bad for good. Only God can do that.

The blog flowed and meandered alongside my real life. Our two boys were in 8th and 10th grade when it started, and now both married, and the oldest has two little ‘uns. I dropped off almost entirely, thought maybe God was done with this particular ministry’s purpose. (Attention spans becoming shorter, many taking it to video.) Sometimes things that happen will strip you of your ability to write. I was Elijah under the Juniper tree for a bit.

In November of 2021, my Mom finally had a needed surgery that had been delayed twice already. It went nearly10 hours, and ultimately created multiple new problems, not even really solving the original one.

She had prepared herself that she might not survive the surgery, but woefully underestimated the effort and determination she would need, for rehabilitating afterward if she lived.  I did my best to make her understand beforehand. And the one singular reason I thought she had a good shot at regaining some strength and quality of life, was the notorious bull-headed stubbornness and determination with which she always approached anything that was important to her. Absent that, I would have tried to talk her out of it. The risks were high, but quality of life is a pretty big deal, and no telling how long she would linger or how bad her health would get if the problem was not addressd. And so thus began in November 2021, a phase in which my own life would change in ways I (fortunately), never could have imagined over the intervening years to present day.

We are meant to follow Christ’s example of serving others.  Whatever we give, God will give back, multiplied. But not always in this life. Treasures in heaven.

My own health issues have been substantial, in that there’s a cluster of them, and if one or two are well managed at any given time, one or two of the others are flaring up. Sometimes they all gang up at once.

When I had windows of time in which I was faring better, I exercised, I caught up on things I had been unable to accomplish when sick, got out more, re- connected with friends, served in church or the kids schools. Prior to 2011 I also worked when I was able.

Stress always exacerbates chronic stuff. Mom lived in the next state. The timing of her surgery meant me postponing and rearranging my own medical care and procedures. I had started having some alarming neurological symptoms in 2011. That bout lasted months, and was the most extreme, up until now. Transient, intermittant, sometimes several at once, here and there some little quirky smaller thing that was weird, but not particularly alarming. Telltale. Spaced out as the symptoms were, it wasn’t until after Mom passed that I had the opportunity to again pursue answers. My symptoms had been frequent enough, consistent for me to finally write them all down and consider as a whole. I started to see the pattern, and remembered a patient I had taken care of, that she had a lot of the same symptoms.

In the back of my mind, I was very aware that none of the already diagnosed stuff explained the new stuff that started in 2011. Don’t get me wrong, that was a clear cluster of enough things, that my primary got all the labs for autoimmune stuff, and sent me for a neuro consult. Fatigue has always been my heaviest, most persistant symptom. But by 2011, My narcolepsy and apnea had been treated and managed, for 3 years yet my energy had not improved much and at times it was still getting worse. Test results showed some elevated inflammatory markers, but no specific clinical picture for any certain condition really congealed out of the tests done. Nobody explained that many of those tests did not difinitively rule out the thing tested for. Back then, I didn’t have time for so much research anyway, and symptoms that eventually pass, are easily dismissed, until that happens several times. Some lab values only show anything helpful when symptoms are active. Long wait times for specialists often land your appointment in a period when symotoms are no longer active. Having been given the impression that all those things were difinitively ruled out, coupled with the fact my doctor tended to dismiss my ongoing concerns, I just stopped reporting it to him when minor symptoms were active. He generally seemed to blame everything on the extra weight I carried anyway. I consulted with another rheumatologist around 2018 and a different neurologist in 2021. That neurologist did some tests, then retired at end of day when I came for the second visit. He said he was going to order MRI, but didn’t. Sheesh. When I requested my records, it was clear that although he was present in body,  his notes didn’t even make sense! He had already retired mentally. Balls dropped meant starting over, finding a new neuro guy. So, yeah. I have serious white coat syndrome. (And also a little teensy bit of rage in the privacy of my car after I leave their presence, from time to time).

Prior to Mom, and actually during Covid, I finally had time to take care of myself! I’d had my hip replacement and lost 64 lbs, and was doing well by the time the masks, lockdowns and distancing stuff started to lift.

After Mom passed, I hit an absolute mental, spiritual, and emotional wall. I had tried so many times to make my own self- care a priority. I used to love working out and walking. But the energy deficit was severe. Having repeatedly set my self-care on the back burner for other people’s unavoidable crises, (family, close friends only) it was like my whole spirit decided “you’re not moving another inch until you properly allow your body and psyche to recover.” Even my mind was numb. Tried to read, couldn’t concentrate. Tried to embroider, tremors too bad. Not depression. Lived with that for many years, and God delivered me out in 2009. Now I have slumps, like everyone has, that lift after a week or so.

When someone I love has a legitimate need that I am able to help with, I do. Period. Non-negotiable. But I count the cost, and make clear my limits.

Now with Mom, I didn’t have a choice in a whole big chunk of what I ended up carrying. Her adult grandson, whom my parents raised, handled the physical stuff I was incapable of doing safely, (her safety and mine).  I was her medical power of attorney, and as her daughter and a former RN, I was “care manager”,  insurance liason, and dealt with all the nurses, doctors, physical therapists, paperwork, various agencies involved, all while traveling back and forth from my state to hers, and when home, often having our grandbaby when two military parents traveled for training, TDY and drill. Wouldn’t trade that time for anything, but restful it was not!

I was also forced by circumstances to play several other roles at once, and into a lot of peripheral aspects of, lets just say “her life and affairs”, which I absolutely never signed up for. (I’m sure that is nearly always the case for the ones that do care for aging parents, but as a first-timer, I didn’t know that. Ironically, I had bought the book “Dancing at Deaths Door” ,which is meant to prepare you some, but had yet to read it. After she was gone, I donated it! ). But there also were issues in my relationship with her that made it extra hard in several respects. It gets into personal history, as well as some family dynamics, nothing I will go into, but the toll that it took, just when I had entered an upturn healthwise, prior to her surgery, which had given me more hope about my own quality of life than I’d had in a couple of decades! Was a najor blow to absorb. It not only halted that trajectory, but sent me back into an active phase of illness. I gained back dome, but not all of the weight. Now it  seems to have now accelerated into a more critical advanced stage at this point. The good news is, that’s providing insight into what this may be. The bad news is, what’s been recommended that I be tested for is a class of disorders for which there is no treatment or cure. My first inclination was: “then I see no point in testing”. My thought process was: I’d rather retain hope I don’t have it, than possibly test positive and lose that hope and live in the dread of how bad it might get, because it is progressive and debilitating in most cases, if you live long enough.

When a patient reacts like I did, it tells an astute Doc the patient is not ready to face more in that moment, and that possibly they are the type who is gonna lean into denial. People cope in different ways. I hate unknown variables. I can’t even write fiction, (too much of a realist). Needless to say, the knee-jerk initial reaction was a placeholder. It can take me a right good while to process certain things before I can know how I truly feel about them. The first week, I wanted to not think about it at all. By second week, former nurse me said; “Guess it’s time to do my research”. The first thing I realized is that the doctor should probably have gone at least one step further and divulged what the consequences might be, of not finding out whether I have it or not. Since it can effect any organ or system in the body. One difference knowing that would make, is it would allow my doctor to monitor more regularly, anything that’s already a little off.

Finding out it is genetic, added the incentive to provide our kids relevent family medical history that their own doctors should know, if they develop things that cause them enough concern to see a doctor about. By week 5, I had read a lot of peer-reviewed articles, and the more I learned of how the condition manifests, the more my experience of symptoms seems to fit the profile. I contacted my doc and requested to go forward with the muscle biopsy test.

Don’t get me wrong. I am not assuming I have it. (Though I have let people in my life know what’s up). There’s so many symptom crossovers between various conditions. Hard to pin down. I am just doing my best to prepare for the worst, and hoping for the best. Muscle weakness, both transient, and as of late, progressive, as well as fatigability are  major features no matter which particular version of the disorder.  Exercise intolerence. Lack of energy. Mitochondrial disorders all do that because mitochondria are the powerhouse of every cell in the body, and at the DNA level, it effects everything.

The Sunday after I requested to go forward with the biopsy, I went to church with my anointing oil in pocket, intending to ask the pastors and elders for anointing and laying on of hands in prayer fir healing (James 5:13-15).

I did not get the chance to do that, because I went into respiratory arrest just after the sermon got started. I already was feeling weak, straining to hold my posture properly upright, beginning to trmble with the effort. What I experienced was my breathing slowed and became shallow because my diaphragm muscles just could not draw downward forcefully enough to get full breaths. As oxygen saturation drops, the body’s reaction is to faint, ostensibly you fall over, making your heart level to the other vital organs, and that is enough to ease the hearts now-somewhat frantic effort to perfuse the vital organs, only it doesn’t do a dang thing for a diaphragm that’s struggling. I don’t think it’s strictly weakness. Neurologically, something could have interfered with the nerve signals that drive respirations, but MRI in Oct, and CT last week, all normal, I was told.   Since I have type I narcolepsy with cataplexy, my husband assumed at first that it was cataplexy even though it’s been so well controlled by my medication and improved sleep that I haven’t experienced an episode in nearly 2 years. He was trying to hold my head up to keep my airway open, but was also trying to ascertain if I was breathing. It was the loud labored gasping breath I tried to take that alerted a Nurse Practitioner who leapt in and took charge, along with an RN and a surgeon who were there that day. The Dr called 911 immediately, the Nurse practitioner was doing sternal rubs (pain stimulus) to try and keep me conscious, and had to give rescue breaths when I paused too long or got too shallow. The other nurse momitored pulse and fetched the AED (defibrillator device). I was in normal sinus rythm, so that was good. EMT’s arrived in 4.5 min, got me on oxygen and to the hospital in maybe 4 more minutes, and I was already much better after oxygen. My husband says the period I was unresponsive was about 15 minutes. I was actually somewhat conscious until I got to the floor and in and out of consciousness during that. The NP was a former cardiac nurse, and she later told me she fully expected cardiac arrest any second. Satan didn’t want me to get prayed over by the pastors, he tried to prevent it, but of course God outplayed Satan’s hand, and instead 150 people, including all the pastors, were praying for me. One reason I think Satan did that is, because I’ve prayed and fasted for my aunt (who is a JW) for many years. Been having some conversations lately that seem like the gospel may be getting through.  Also, I have a neighbor I intended to give the gospel that week, which I did get to do. What the enemy intends for evil, God always works it to be for good. The pastors still came to my house and did the anointing and prayed for healing later in the week. Knowing heart block is one of the major risks of the disorder, I dutifully saw a cardiologist, and am wearing a monitor to record my ecg for 14 days as I write. He ordered a chemical stress test as well, though the way I am feeling, I’m not sure I should do it, because if I have a mitochondrial disorder, metabolic stress could easily lead to catabolic crisis, if that’s not already what is happening. I’ve had very little appetite for weeks, but thought the intermittant fasting, which I had stopped in early Feb, had shrunk my stomach capacity. I’ve now also learned fasting is no bueno if you have this thing, so there’s that.  I’d been feeling bad 2 days prior to the Sunday event. Haven’t felt really any better, except maybe for an hour after I wake up.

Whatever is going on, it has effected my quality of life a great deal since 2011. In conjunction with my other health issues, it’s a lot.

I’m content to go or stay, whichever the Lord has lined up, if that’s where it’s headed, and we all could be getting our glorified bodies any minute now anyway. I kid you not, I have had more stress over additional doctor visits, having to make decisions about tests, and having more tests, than any stress over what happened Sunday, but you know how it is. Doing what’s prudent, for the sake of those that care about me.

But I wanted you guys to know why, (aside from burnout),  I hadn’t gotten back to the blog in any substantial way. Prayed about shutting it down. Writing just wasn’t in me still, even up until the past couple months.

Sometimes you just gotta be still and let things perk for as long as it takes. I think more of the figuring-out-of-stuff happens in the subconscious than we realize. Or maybe it’s just us overthinking neurodivergent folk that don’t realize it until our whole entire being goes on a sit-down strike, lol.

The mystery continues. I’ve been told twice that Myasthenia Gravis is ruled out. In absence of the antibodies, while exhibiting most of the symptoms, plus ptosis and hearing loss, is why we are now testing for the mitochondrial stuff. But none of my 3 EMG’s were the single fiber type. That’s the only kind that can rule it in or out with 98-99%accuracy rate. I will see my primary Doc Monday, for my physical. Plans may change entirely at this stage.