Category: Gastroparesis

This will be a short update. In part, because Xena Malka is noticeably less tolerant of my arm movements than Dancer eventually became, and typing is a bit difficult right now. But also because I am tired from an extended walk around the block and apparently I have to navigate an airport in two days.

At the moment, the whole airport thing feels a bit terrifying to me. So many complicated questions. Assuming I disconnect to navigate the airport (I assume at some point, some security entity is going to want me to disconnect and then I would need to do a flush to disconnect at security–something I would rather have more control of elswhere) I will be denying myself calories just when I need them most. Do I just deny myself the calories or shorten my 4 hour intestinal recovery break?

Normally, I would just shorten my break, but I am currently acclimatizing myself to a whopping 27 mls per hour, up from being stuck at 25 for 5 months. Which means that my breaks are really critical right now. I will just have to see how I am feeling on Tuesday.

There are also the physics questions of how we get 3 carry on suitcases to the gate if I am being pushed in a wheelchair? I am relying on the folks at the airport to have a plan in place for just such scenarios. But I really hope that one doesn’t come back to bite us on the ass.

I also made the decision to leave my cane chair behind because we don’t want it confiscated at security if they deem it not carry-on. It is not your typical cane chair, it is actually a collapsable camping chair that David carries in a handy carrying pouch when we go out for walks. It is much more comfortable and does better on uneven ground than the typical cane chair.

That will limit how far I can walk if there aren’t conveniently located resting spots for me. Obviously we are leaving my transport chair at home. Everything I have every read on the topic says in big red letters something along the following lines:”DO NOT BRING WHEELCHAIRS ON AIRPLANES UNLESS YOU ABSOLUTELY HAVE NO OTHER POSSIBLE CHOICE. THEY WILL GET TRASHED”

I suppose if we really want to get adventurous, we can rent a wheelchair on the other side. Fortunately, our hosts primary prerogative is to get guests to sit in their living room and look at Puget Sound through their windows. So I guess I am well positioned to fulfill their intentions.

This post comes to you with all of the misery that comes post vaccination, as I am suffering the impact of having had my covid and flu boosters. No regrets here, but, I am not exactly comfortable. As always, it is a good reminder of just how much more miserable I would be if I were to actually get Covid or the flu. I will take my masks and my vaccinations, thank you very much.

This time my vaccinations are part of a plan to fly for the first time since The Before Times. Hard to be sure which Before Times I am referencing here because it is not just the first time I am flying since the beginning of the pandemic, but also since I got Etisarap, my feeding tube. Because both bring a whole host of complications.

Covid precautions are relatively easy. We got our boosters and we intend to mask for the trip. No different than our usual practices. We have negotiated with our hosts for them to up their own covid precautions and test before we arrive so that we can stay with them.

I got this far in writing this post before I got waylaid by a UTI. Far be it for me to waste effort these days, so you will just get a bifurcated post. Pre and post antibiotics.

As I was saying, the Covid precautions are pretty straightforward. And we have traveled by car, so I have at least a sense of what packing will look like. Although, everything needs to be more consolidated by air, so we will likely need to buy a new piece of luggage. We actually have plenty of luggage. In storage. But we only brought two carry on suitcases with us because we figured we only every travel carry on only. Well, those days are over.

The first thing is my formula. Because I have yet to get confirmation from my supply company that my formula was approved. I was able to find a way to order my formula directly from Nestle. It has arrived and I am back on the adult formula. This presents me with an opportunity, rather than carry nearly a case of formula with me to the west coast, I am going to ship a case of formula directly to the friends that we will be staying with. That will save some misery because we have a lot to haul with us.

Obviously, I have to travel with more than 3.5oz of liquid. I have filed my notice with TSA and gotten their confirmation. I am not quite sure what this will look like when we actually hit security. But I do know that we are going to want to leave plenty of time for them to be confused by me. Just because everyone seems confounded when they encounter my G/J tube.

David requested a wheelchair for me when he booked us our tickets. There is no way that I have the energy to navigate JFK airport. Speaking of which, how ridiculous is it that we live 3 miles from LaGuardia airport, but we are flying out of JFK which is nigh impossible to get to from here. For clarity, both airports are located in Queens.

That is as far as we have gotten in our planning. I already miss the days when I just threw my clothes and meds in my suitcase and went anywhere. But this is my reality and I have no choice but to own that travel has just become much more complicated for us. I am grateful, however, that difficult doesn’t mean impossible.

Experimenting is over and we have called it. My old formula was the problem. Problem solved, right?

Not so quick. I emailed my new tube GI and asked her to order the new formula for me. She wrote back and asked me how much per day. I responded. And then radio silence. And as of Friday afternoon she has not put in the order. I emailed her, but didn’t get a response. Not that I expected to.

I have finished the sample case of the new formula. So my choices were to either buy more while I wait for the GI to put in the order, or go back to my old formula to wait it out. The answer to that one was simple.

The new formula is a Nestle product. And yes, I have lots of ideological issues with the fact that I am now on a formula made by Nestle. But I also like being a functional human, so I am buying it anyway.

Anyway, I purchased a case from their official store on Amazon. And they sent me the pediatric formula. The formulation is close, but not identical to the regular one, but what else could I do? I am using the pediatric formula.

I wrote in and complained, and I got a refund, but no way to get any reassurance that when I order a second case, I will get the adult formulation. It will probably take a couple of weeks to get my new formula sorted, so I can’t just wait it out and hope. So today, I hunt online for legitimate sources of my new formula.

If all else fails, I can always go back on my old formula. It is not ideal, but it will keep me fed in the interim.

This week I had the last of the GI appointments that Mary set up for me back in June. This one was the fan favorite. Every time someone in one of my Gastroparesis groups asks for the name of a GI in NYC, this guys name comes up. So I figured that I needed to check him out.

He absolutely lived up to his reputation. He is the doctor who knows the most about gastroparesis of any of the GIs I have seen. And he confirmed that I have been getting excellent care. He also suggested that since I have lost my most effective motility medication, I try a very low dose of Erythromycin. The naturopathic doctor that specializes in GI issues and has experience with gastroparesis had previously suggested the same drug. Apparently at that level it functions as a motility drug, not an antibiotic. But even so, my body could get used to it. So I am on a three weeks on, one week off schedule.

And because we weren’t already messing around enough, I recently upped my dose of cymbalta. The lower dose didn’t do much and my brain is still misreading motility as pain.

Let it not be said that chronic illness doesn’t leave you with a full plate; all in an effort to have what approaches a normal day.

Hold on to your hats folks. This is a pretty big deal update. The change in formula has been absolutely transformative. I am on day 4 and I feel like me again.

I spent an hour knitting yesterday and a half hour knitting today before I decided to write this post. And that was after running out to the pharmacy alone (David is feeling under-the-weather from a med change), where I made two additional stops and walked a couple of blocks. Which was after an hour and a half long telemedicine appointment.

David even said he felt like he had his Eva back.

The transformation has been like night and day. I was even able to up my feed to 27 for a few hours.

It is possible that this is a coincidence and I just hit a new nutrition threshold. So after a week or so of the new formula, I am going to go back to my old formula for a bit just to be sure. But the amount of progress I have made in just 4 days has me thinking that I have a formula change in my future.

I have already met with my nutritionist and she is totally on board. I will be sad to give up the easy supplemental nutrition of drinking my formula, but I have also had the best couple of eating days these last two days. Which means that with some careful pre-planning and understanding that some of my food will inevitably go to waste, I might be able to maintain good nutrition even as I ever-so-slowly increase the speed of my pump.

That’s its for now from the very rarely heard from Good News section of this site.

Rosh Hashanah was very nice. David found me a round challah, even though he had to dig for it. The services were very well done, with a major yasher koach to Rabbi Kelilah Miller for an extraordinary job. She is a fabulously talented musician, and I would recommend checking out her music on Soundcloud. To top it off, we even bumped into the local Conservative synagogue at the park yesterday where they were doing tashlich.

Now back to our regularly scheduled medical update.

Tuesday’s appointment with the GI was In the Heights, and arriving there was a total nightmare. Ambulances were double parked pushing their gurneys with people on them through a lane of traffic into the hospital. Fortunately, they have valet parking because David was thrilled to be able to hand over the keys and make them deal with parking. All in all, it was 4 hours door to door, with only 45 minutes of that being my time with the actual doctor.

The doctor himself was good. Just a bit of background. I originally had an appointment with a different GI at Columbia. But when Mary sent in my chart, the practice switched me to their gastroparesis expert. So there really is no one better at Columbia.

The doctor had clearly looked at my chart before he came in to meet with me. And it was nice to have an actual conversation with a doctor about the mouth twitches. All of my exchanges with the non-communicative GI on the subject had been on email over the portal.

As expected, there was little the new GI could do for me. He concurred that I am now off my most effective med for good. And there aren’t any other magic pills or procedures waiting in the wind. He made a minor adjustment in one of my other motility meds and made some suggestions for the psychiatrist if the cymbalta doesn’t play out as we hope. And, and this is a huge and, he would want to discuss that with the psychiatrist. This guy is clearly a team player. Something I have desperately been searching for.

David even asked explicitly who he has covering for him when he goes on vacation. he said that he has people that he refers his motility patients to when he is out of the office. So no more waiting through 4 days weekends to get any kind of answer out of a doctor. I’m sold.

I do have one more appointment with a potential GI in October. That one is a fan favorite in my gastroparesis groups. I am keeping that appointment just to be sure. But for now, I am comfortable with who I have.

The neurologist was a very different story. Let’s just say that there is a reason that Mary was able to get me an appointment with him so quickly. He did his residency in Staten Island. For you non-New Yorkers, Staten Island is truly the red-headed stepchild of New York City’s 5 boroughs. And thanks to “What We Do in the Shadows*” I can only hear it said in Nandor the Relentless’ voice.

Clear disparagement aside, the neurologist was comfortable that since the mouth twitches are continuing to dissipate since I went off the medication, there is no serious time-sensitive emergency. He ordered a couple of MRIs of my brain and C-Spine which I am getting done this coming Thursday. He also referred me to a movement clinic, which Mary is working on getting me scheduled with.

Also coming up next week is an appointment with a psychiatrist who will be working with my GI on the gut brain issues. That sums up my medical life for now.



*What We Do in the Shadows is a brilliant mockumentary series on Hulu and has done more to raise the esteem of Staten Island in my mind than anything before it.

Mary managed to get me an appointment with a neurologist for this coming Thursday. This was no mean feat. She couldn’t find me an appointment with one that accepts my insurance at all. When I told her we would pay out of pocket, she found only one who could see me so quickly. She said that she has never seen such a dearth of provider appointments. Everyone else was scheduling into October and beyond.

It was a similar story with the psychiatrist. There we had less time pressure, but no one takes my insurance. So once again, we are paying out of pocket. For context, we get our health insurance through the ACA, off of the New York State Health Exchange. We have the best insurance plan that the exchange offers.

The tremors are slightly improved. But my jaw is sore and my tongue and mouth rubbed raw. They are also agitating in general. A few days ago, I was so agitated that I snapped at David about them. Xena Malka immediately looked at David accusingly. To be clear, David did absolutely nothing wrong, nor did he warrant me snapping at him. But apparently I left Xena Malka with the impression that he had done something horrible to me.

After we calmed her down and made it clear that everything was reasonably alright, David and I walked down to the convenience store to get me some gum. The gum was David’s brilliant suggestion. It keeps my mouth busy and therefore keeps the tremors away. Turns out for tremor management, Dentyne sugar free cinnamon gum is the way to go. I was not paid for that endorsement.

I already had an appointment with a new GI scheduled for this coming Tuesday. One of the appointments Mary made way back in June. It actually comes at a good time as I am now no longer on my primary motility drug and I don’t know where we go from here. My uncommunicative GI was characteristically silent on the subject.

Some of you may have also noticed that Rosh Hoshana starts Friday night. So we are just packing the week absolutely full. It took a long while, but I finally decided which service we would Zoom in to. It is nice to have so much choice, but it is truly getting wearing to not have been to High Holidays in person for so many years. I am missing the prospect of people watching folks in all of their high holiday finery. Honestly, I am mostly just missing the people.

But this is not the year. I already know that I will not be able to make it through the whole service. That will just be way too exhausting for me. For those not in the know, Rosh Hashanah Services can go as long as 5 hours, although the ones I go to generally run closer to 3. Regardless, that is a lot of attention span for my poor, nutrition-starved brain. So I will just be doing the highlights. But I am a huge fan of the rabbi and I am looking forward to getting the parts that I can.

I know folks are going to be anxious for updates after my two doctors appointments. We will have to see how quickly I can get them up given how packed the week is. I will do my best, but it may just have to wait until after Rosh Hashanah.

It has been a while since my last post. Unfortunately, chronic illness can be boring. I spend my time sleeping, being bored out of my gourd (but not in a creative, let’s build a space station kind of way, but in a I’m bored, but too sick to think or read or do anything interesting kind of way), being a good girl and drinking my formula and most importantly, spending time with David and the cats.

Apparently, even boredom abhors a vacuum, so here we are, with another update.

After several cancellations, I did finally see the nutritionist. She is good. She got the extent of the impossible puzzle we are in when it comes to my nutrition. She suggested that we try a new formula. The formula I am on is the absolute best, but anecdotally (and she was very clear on that word, which won her points with us), she has seen patients have abdominal pain with my formula.

For reasons that defy logic, almost all tube formulas have soy and or dairy, both of which are common allergens. I am allergic to soy, so she was able to narrow the choices down to a single soy-free peptide formula. Unfortunately, it has almost the exact formulation as my current formula, but it is worth a try. She is trying to get a sample from her sales agent so we can see if that makes any difference in my ability to increase the rate of my pump.

Additionally, she suggested that I try a protein rich soup in addition to my formula to get my calories up. David dutifully made me two containers of soup, just in time for a heat advisory. The soup is waiting patiently in freezer for the outside temperature to drop below soup temperature itself. Then I will add that to my daily intake as my stomach allows.

I have now been on 60 mg of cymbalta for just over a week. I am definitely feeling it enter my system, because some unwelcome, but familiar, constipation has returned. I am, however, still struggling to move my pump up from 25ml/hour to 26 ml/hour. I was able to white knuckle it for 14 hours, but when I woke up in the middle of the night and unable to fall back asleep, I finally gave it and switched it back down to 25ml/hour.

As anticipated, the psych nurse practitioner in Plattsburgh that the Stony Brook GI put in charge of managing the cymbalta has fallen down on the job. Mary is on the job trying to find me an actual psychiatrist to manage my medication. She hasn’t been able to find someone with explicit knowledge of the gut/brain connection, but she has found me one that has experience with chronic health issues. We are calling that close enough. She is working on getting me an appointment.

All of that would make a reasonable enough update, but hold on to your hats folks, because here it where it gets exciting. I have developed mouth tremors.

Turns out that mouth tremors are a rare side effect of domperidone. Domperidone is my most important motility drug. It has exactly one alternative that not only doesn’t work for me, but has lousy side effects, including depression. The anxiety-inducing impact of developing a rare side effect of my most important medication when I have a chronic disease without cure or treatment cannot be overstated. Turns out, anxiety exacerbates mouth tremors. Who knew?

My uncommunicative GI told me to go off domperidone immediately for 48-72 hours and asked if I had seen a neurologist. I responded that I had not and what would happen at 48-72 hours. In response I got the name and the number of a neurologist who is scheduling months out.

Just a quick timeline here. I wrote to the doctor about the tremors on the Friday before Labor Day. He did not get back to me until Tuesday. Today is Wednesday, and I have been off the domperidone (and the tremors are continuing) for 24 hours. 72 hours is Friday. He does not work Friday. So once again, he is forcing me to wait an additional 3 days an answer about my most important medication. Something he offhandedly acknowledged in his original reply. Mary is seeing red and intends to start calling his office Thursday morning until I get some kind of response from him. We also both acknowledge that his ultimate response may remain useless.

Now we get to add a new doctor to my stable. Mary very quickly found me a neurologist who could see me next week. But before Mary could ever update me on the appointment, I got a call from the doctor’s office cancelling the appointment because that doctor doesn’t deal with facial tremors. Who knew neurologists were so specialized? Mary was particularly pissed because that particular doctor’s website explicitly says that they deal with tremors of all kinds.

So that is where I find myself now. Twitching away while Mary works her magic for me. I remain immensely grateful for Mary, because I could not be doing this research myself right now. Not in my nutritional state.

I want to add a grateful thank you to those of you who have been checking in on me. I may not always be up for responding right away, but I appreciate the messages immensely. They make a huge difference for the state of my mental health. Thank you.

We are back from our travels, and it is nice to be home. But Dancer’s absence remains a keenly felt hole in my heart. I feel like I am letting his memory down by not giving him the tribute he deserves. But I am so exhausted and numb I don’t feel like I could give him his proper due. I still can’t bring myself to look at pictures of him. So it will be a bit longer until I share the wonder that was Dancer with the world. I don’t know if the tribute will be worth the wait, but he certainly was, given that we didn’t see him for the first few weeks he lived with us. But that is a tale for another time.

We have learned that travel is possible, albeit a bit bulky, given how many medical supplies and redundancies that we have to pack. This most recent trip I forgot one of my pain medications. Fortunately, It was one that did not have any withdrawal symptoms. I left it behind on a Saturday and I didn’t hear back from my palliative care NP until Monday. I don’t seem to be any worse for the wear for not being on it, so that it one med that I can strike off my list.

I had been trying to wean myself off all unnecessary meds when I found myself suddenly needing to add several, so this is a small victory. Speaking of meds, I have now been on 30mg of Cymbalta and I think (hope/wish) that it may finally be working. We tried upping my feed from 25 ml/hour to 26 ml/hour overnight while we were in Lake Placid and I didn’t wake up in tears. But I was still white knuckling it. David didn’t think I was getting any more nutrition than I was spending gritting my teeth through it. So I returned my pump speed back down to where it had been.

I want to try increasing my pump speed one more time before I meet with my psych NP on Wednesday. If I can’t pull it off, I think I am going to concede defeat and go up to 60 mg of Cymbalta and see if that does the trick. I am beyond ready to start the long, slow slog to full, or at least, adequate, nutrition. Based on my previous experience, I was only able to increase my speed by 1 ml/hour every 3 days. So even if I succeed in my experiment, it will be months before I get back to a sustainable level.

I am drinking 1/3 of a container of the 1.4 formula at least once a day regularly now. And I am getting two servings in more than half of the time. That gets me to 1,100 calories, which does make a noticeable difference in my brain processing power. I am so depleted, the impact is short lived, but it is certainly an incentive to keep pushing it in.

The combination of the added exhaustion from the travel and my malnutrition has left me really bored. Sit coms have become too much. I can watch short clips of humor on YouTube and that’s about it. I can barely read anything of consequence. I am even struggling to watch baseball when I get tired. It is all just so cognitively overwhelming. Any and all content becomes an overwhelming noise in my brain that just exacerbates my exhaustion. I loathe it.

My appointment with the nutritionist was rescheduled to tomorrow. So hopefully she will help me come up with a feasible and sustainable plan to keep upping my nutrition. I can’t think of anything more than keep drinking my formula, but what do I know. Regardless, it will be nice to speak with a nutritionist who has experience with enteral nutrition.

I am in no shape to be writing this update. I am exhausted, in pain and my heart is broken into little bits. But there is news, so I am posting.

Quick update. For anyone who missed it, we came home from the Berskshires to a very sick Dancer, my much beloved cat of 13+ years. He left this world at home, in my arms, Sunday afternoon. He deserves a memorial post, but I am not yet ready to write it. Everything is just too raw right now. Given that we are heading to Lake Placid for a week with the other side of David’s family on Saturday, it may be a while. But he will get the tribute that he deserves once I am feeling up to it.

The Bershires went much better than expected/feared, but since we literally walked into an emergency at home, I have neither processed nor healed from that yet. Possibly more on that another time.

The real update is that I have medical news to share. After some to-ing and fro-ing my Stony Brook GI finally got in touch with my psych nurse practitioner who supervised me going off my psych meds. They have agreed to start me back on 30mg of Cymbalta to see if that works. I took my first dose yesterday.

Amidst the loss, I managed to pull off my 15 hour fast and SIBO test yesterday. David went into Manhattan for me to drop off the completed test. Results will take 5-7 business days. So we settle in to wait for news.

I have an appointment on Thursday with the nutritionist that the traumatizing GI referred me to. This nutritionist has experience with tube feeding, which makes her, in my experience at least, a bit of a unicorn. I am looking forward to having a conversation with someone who gets nutrition, but I am also anxious given the circumstances.

We now have both the original 1.0 and the 1.4 formula at home and I have been supplementing my nutrition orally. Occasionally I get fancy and can drink two servings in a single day and gotten in as many as 300 extra calories in me in a single day! But even the extra 150 makes a difference.

Of course, nothing involving my tube can be easy. When I tried to order my monthly allotment of formula and supplies, my supplier told me that my formula is backordered until the end of September. They offered me the option of ordering the 1.0, which would drop my caloric intake by a third, or get an Rx for another formula.

The problem with many other formulas is that most of them have soy. And with me being allergic to soy, that makes them a poor choice. There are a few formulas without soy, but I don’t know if they have a 1.5 peptide option. Basically, it wouldn’t be an easy switch.

In retrospect, the following is something that I could have had Mary do for me, but I didn’t know that I was about to fall down into a rabbit hole. Hang on folks, this is where it starts to get weird.

I called the formula manufacturer, a company I have been ordering directly from for over a year now, to see if they have any of my formula in stock. When I told my tale of woe, I got transferred to their customer advocacy team. I once again, relayed my tale of woe and, once again, and they said they would call me back.

They did and told me that they had spoken to the sales team who assured them that the next time I ordered my formula, it would be in stock. I explained that that time was now, and I had just been told that they were out of stock until September 25th, which is why I called them in the first place.

They said he would call the sales team again. Shortly thereafter I got a call from the supply company telling me that there had been a miscommunication (although carefully, not an apology) and my order would be shipped tomorrow. I am still kinda holding my breath until I get the shipping notice from my supplier.

Tuesday, I had my appointment with the traumatizing GI. Fortunately(?), I had seen my family on Sunday and I was still exhausted and my dysautonomia was in full swing. Not even my anxiety could get my blood pressure up much. My blood pressure was just 98/63 in the office. Think about what your blood pressure looks like when you are anxious! That was the best that I could do.

The traumatizing doctor’s demeanor was much more chill this time. But she still didn’t know what to do with me. Like my main GI, she is also supportive of the Stony Brook GI’s theory that my issue is a brain/gut issue and supports the anti-depressant approach. Still no word back from the Stony Brook doc though.

But basically, this GI’s field is enteral feeding. And since my body isn’t actively deteriorating from malnutrition, I am not her kind of patient. She made it clear that she is not the GI that I am looking for. In fact, she doesn’t believe the kind of comprehensive GI that I need exists. Apparently no one specializes in motility AND PEG tubes AND nutrition.

But, she is willing to be a peripheral part of my team and my tube doc. For me, the most important part of the appointment was that she referred me to her Registered Dietician, who does specialize in enteral feeding. even though I am still stuck, she can at least help me with longer term goals, assuming that I can ever get my pump speed up.

Speaking of which, I think the small intestinal bacterial overgrowth (SIBO) is back. The pain in slowly increasing again. I had almost a week of stability after I went off the xifaxan. But since then, it has been a steady decline.

We picked up a SIBO test from my GI’s office while we were in Manhattan on Tuesday. However, I cannot take the test until I have been off the antibiotics for 2 weeks. So I am looking at Saturday at the earliest. Unfortunately, David needs to then bring the completed test back to Manhattan for analysis. We are leaving for the Berkshires on Monday, so it will be a week before David can bring it back anyway.

I am of two minds on the test. Part of me wants to take it right away just to get it done with. But I have to be fasting to take it, which means losing about 12 hours of nutrition. And no pain meds the following morning or during the 3 hour testing period. Regardless of when I take it, it won’t be a pleasant experience. So, it’s not like I want to rush in.

I have been eating less because of returning pain, so I finally gave in and have started supplementing my nutrition by drinking formula again. I was incredibly resistant to doing so, and started sobbing just at the thought of it. My therapist suspects that the sobbing is residual trauma coming out. But I have been pushing through and I can now get a glass of formula with just a few tears, so my efforts to just push through the tears seems to be working.

The original idea had been to use the oral formula to increase my caloric intake. Because the returning pain means that I am eating and drinking less, the formula is just replacing the 100 or so calories that I was ingesting already. But it is a start. And my hope is to slowly increase the amount of formula that I can get in orally. Pain-willing, of course.

The plans for the Berkshires are continuing afoot. Yesterday, the cat sitter came by to check her keys (it has been over a year since we used her last) and to get the updated routine. We are continuing to add to packing lists and there is now a pre-departure to-do list.

Despite everything that needs to get done, I am doing my very best to take every opportunity to rest. Every little thing just takes so much energy from me. As always, there is a lot that David can do for me, but when it comes to my health (including packing up my medical supplies) he still needs my brain to help. And those little consultations seem to add up and exhaust me. But we are doing our very best to have me in the best shape possible for our Berskhires adventure.