Embracing A Terrifying Anniversary

Valentine’s Day

One year ago this day, at approximately 10 p.m., I rushed Jacquelynn to Bethesda North Hospital in Cincinnati with a kidney infection so severe that, mathematically, it should have killed her.

Those of you who have been reading this blog for a while (or have gone back through the archives and caught yourselves up) know what has happened since, but in shorthand, two bouts of “Severe Sepsis With Acute Kidney Damage”, a number of terrifying “psychotic episodes”, and a diagnosis of Acute Early-Onset Alzheimer’s Dementia.

Today, twelve months to the day later, we celebrated our 19th Valentine’s Day together as a couple, and our first as man and wife.   I’m more than thrilled to tell you that there is more of Jacquelynn present and interacting with me each and every day than there had been for nearly a year prior to last year’s cascading events.

Jacquelynn awoke to another Valentine’s Day card (she’s gotten a card or gift every day for the last week, which I’ve been doing for many years) and we were on the go for quite a while afterward. Amid our errands, she got to spend some time catching up with a dear friend and is still talking about it.

Karen was a terrific sounding board for her. Sympathetic and understanding, she, like us, wants only to see her friend recovered and vital once again. With the exception of that conversation, the subject of Jacquelynn’s illness didn’t enter into discussion a single time today. Of course, I administered her meds and supplements as necessary and fed her only the clean, organic and unprocessed foods she’s allowed, but these things are quite ordinary now, and occur without any overt need to discuss them.

This was 100% by design, by the way. I began this day with a silent commitment to purposely avoid any mention of Alzheimer’s, recovery, or doctors at all unless I absolutely had to.   Catching up with Karen aside, I wanted for her a Valentine’s Day as close to normal as I could possibly arrange: we’d stick to our regimen of meals, supplements, meds, exercise, and meditation same as always, but all talk would be uplifting and without dread, tears, or fear. I figured if I could manage this for one day, just one day, then I could maybe manage two. And if I do actually manage two, then I figure the sky’s the limit.

And it was a terrific day on all accounts. Romantic, relaxed, and quiet, we adhered to her regimen, but watched television, cuddled, and napped as well. And, as we prepare to call it a night while trying to pry ourselves away from a compelling documentary, she’ll tell you that it’s been a great day, and she feels blessed, happy, and blissfully sleepy. She’ll also tell you that she feels wonderful; healthier and more robust than she has in a long time. She knows that there is far yet to go, but she’s 100% committed to her path and her health.

Health and healing are made possible by the heart and mind, after all.   Yes, medications and professional medical input are essential, but if the mind and the heart aren’t 100% committed and aligned in their purpose, if fear and dread rule the day, if the focus is the disease and not life, then no amount of medicine, nutrition, exercise, or “Doctor’s Orders” have a hope in hell of healing you.

Only you can make your own healing possible.

Only Jacquelynn, albeit with all the help I can muster, can make her own return to full health possible.

And By God, I’m going to do everything in my power to enable her to do just that. With her strength and focus, nothing, and I mean NOTHING can stop her.

Progress Tries To Trump Fear (and mostly succeeds)

There are days I really wish I were better at this.

Jacquelynn really is doing better, and we’re both very much looking forward to our first appointment with the new doctor on the 19th.

Jacquelynn’s exercise time on the stationary recumbent bicycle has improved and increased all on its own. We started off just at any pace her body set, just trying to get 5 minutes of pedaling in. I made the decision very early in that I wouldn’t inform her of the elapsed time unless she asked, so as not to artificially limit her time. Initially, she was asking at 2-3 minutes, and I was gently nudging her to complete the five minutes. Today, she finally asked how long she’d been going at 9:40, and at a much faster pace as well (the display on the bike fritzed out a week in; what you expect for $70 at Play It Again Sports).

We are also meditating together twice daily now. We’d been talking about it for a while, but she finally reached a point of willingness dovetailing with awareness that it’s a viable activity now, and she’s really taken to it. Again, we started just a week ago at five minutes per session, and that has very easily ballooned to 15-20 minutes each time. I put on some gentle isochronic tunes (try the Insight Timer app; wonderful source and free as well!), and softly guide her through a breath-focused meditation that helps her create a place of calm and peace within that she will eventually be able to return to at a moment’s notice whenever she feels frazzled or afraid.

We’ve already noticed a considerable improvement in her focus and even her conversational skills immediately following meditating; words come more easily to her and even when the precise word or phrase she’s looking for isn’t readily available, her reactions are much calmer and gentler. Without a doubt, this will be a boon of ever-increasing value as she continues to heal.

 

But, as I stated in my opening sentence, there are definitely days when I wish I were better at this:

 

For many years, Jacquelynn has been subject to late-night leg cramps.   Occasionally, they’re so bad that she’s woken up screaming, feeling as though she were being skinned alive right in her bed. We used to treat these with an over-the-counter pill called, appropriately enough “Leg Cramps”, and of course, plenty of water.

Well, the pill was essentially a potassium supplement, and that is now officially a no-no. Her potassium was WAY too high upon testing last fall. So, with those same cramps shocking her awake two of the last three nights and three times in a week, that leaves water as our only recourse.

As you may imagine, Jacquelynn drinks a good bit of water, taking 20+ pills every day. Or at least it would seem so. Measuring it out, I have apparently allowed a significant lapse in her intake. Even with constantly topping-off her small pill-taking-glass with lemon water, she’s getting less than 16 oz daily. Add the 8 oz glass that begins every morning, and she’s still well under the recommended minimum for every human, not to mention someone with her medical history.

You see, historically, the leg cramps begin a month or so before her next trip to the emergency room for kidney stones, signifying a dangerously low water intake.

So, today I increased her water intake. An additional 32 oz daily to begin with, eventually to level out at 48 oz over and above what she gets taking her pills.

Here’s where I should have known better.

Now, I know full well that change isn’t Jacquelynn’s best friend.   Where she used to be unbelievably flexible and resistant to routine, exactly the opposite is the rule today.   Structure is essential, and any blow to that status quo is very difficult for her to adjust to. This knowledge in hand, you would expect me to just subtly sneak in a few extra glasses of water each day, gradually getting her comfortable with a new routine without announcing such a substantial change.

And you’d be a damn fool to expect me to be so wise. The first two-plus hours of the day were spent going back-and-forth from consoling and trying to put her at ease to explaining and finally arguing over the necessity of it. It finally calmed down when I turned the tables on her (albeit unintentionally) when I admitted my terror that I had already killed her by letting her go so long without drinking anywhere enough water to stave off another bout of stones and eventual sepsis.

Yes, these fears live within me. Yes, sometimes when I’m in the bathroom for an hour and a half, I’m weeping uncontrollably rather than taking a shit. Yes, my nightmares often involve losing her to my own inaction. Yes, I can meditate and calm those fears to return to my true faith in our path. But, No, I never intended for her to know these things. I did NOT consciously dredge that out to use it against her.   I would never conceive of that.

 

It worked, but I should be smarter than that by now. I should damn well know better.

 

She’s 4/5 of the way through today’s allotted water intake as of 3 p.m., and I’m charting it for her to observe and to help her know what to expect.

Goodbye, Savannah

I am definitely NOT enjoying this process, and I’m hopeful that it proceeds in a professional, patient-first manner, but I am in the process of “interviewing” new doctors for Jacquelynn.

As regular readers are aware, her original doctor on this protocol was, by all evidence, a tremendous physician, but in the long run, her office’s unresponsiveness and lack of follow-through doomed this relationship.   We have never, from the first scheduled-and-twice-delayed-without-warning follow-up video conference appointment, felt as if Jacquelynn’s case was treated with any level of priority. I listened to all the stories of staffing issues and taking over patients from other doctors mixed with the pressures of opening an office on the West Coast and serving as CMO for the entire institute while mired in an ongoing legal battle over the flood damage to their primary office, and while I sympathize and empathize with all these difficulties, to be brutally honest, they mean shit to me.

What matters to me is my wife, and all the explanations in the world aren’t going to get us past the fact that she deserves and needs to be a priority to her doctor. This is a very hands-on process, and we need a physician with that same philosophy.

I actually thought we had this all ironed out last Thursday (1/25/18).   With the doctor’s finally reviewing with us the three-month-old results of her Lyme screening (positive for four strains which we could have been treating all this time) and promise to get the information for how to proceed as well as scheduling follow-up labs and our next office visit to me that evening or the next morning at the latest.   But it’s been a week and I’m still awaiting that information. I’ve emailed a firm but polite reminder, which has also gone unanswered.

So, earlier this week I logged onto the MPI Cognition site and searched for doctors/practitioners nearer home. Mind you, this is a very new feature, only live for a little over a month, so not an option that was available to us when we desperately needed to get Jacquelynn seen as quickly as possible. I had at that point written Dr. Bredesen’s office directly to request a practitioner referral and was told that their referral system was under construction and wouldn’t be live anytime soon. That is when they referred me to the first doctor we saw. Even though she was in Georgia, 600+ miles away, it was our only option at that time east of Los Angeles, so I called and got us a very difficult-to-schedule appointment. We even got bumped up once due to a cancellation.

To my surprise, the site showed me two offices within fifty miles of our home. The nearest is an MD, Naturopathic Doctor (ND), and Functional Medicine specialist who has long specialized in treatment of toxicities, with Lyme being one of her primary focuses.   Our first appointment with this new doctor is Monday, February 19th.

Bonuses, as I see them:

This doctor (who shall remain nameless until I know for sure if this relationship is going to work out) is about 40 minutes from home. In addition to the benefit of no more travel/hotel/fuel (or plane ticket) expenses, her listed office visit prices are significantly lower than the first doctor’s.

For the first 6 months, this doctor wants to see ReCODE patients monthly, to monitor progress and stay on top of any adjustments which need be made.

Following that, every 3 months.

I’m deeply hopeful that this proves to be a terrific relationship. As many of you know, my personal philosophy is that life happens for us rather than to us. I believe that I was led to this conclusion and that it is the right thing for Jacquelynn at this juncture. We NEEDED Dr. Ross at the beginning of this process, and remain hugely grateful for her and to her. Without her help in September, it is unlikely that there would be enough of Jacquelynn remaining at this point to save, and I will always feel indebted to Dr. Ross for that. But every situation evolves, and this is how it has unfolded. I’m honestly excited to proceed.