Meanwhile, back at home

While David is on his long anticipated cross country trip (he started dreaming of this trip long before we decided to move back west), the cats and I are at home. We are watching his adventure unfold with the rest of you.

Fortunately, life at home is not much of an adventure. There are regular lectures from our Nommie and Xena Malka is being a little extra clingy. On the other hand, she has an itchy ear and is getting ear drops twice a day, so she has more than one reason to be a bit out of sorts.

I am doing better than I had feared/anticipated. I haven’t ventured out of the apartment yet, but I did have an excursion planned for today that got rescheduled for Thursday. I will also need to go visit our friendly pharmacist in the next day or two to pick up a refill. So I have adequate motivation to get out of the apartment. It does absolutely blow my mind that bu the end of next week, I will be living in California.

But first, some absolute road warrior machinations by David. He and our car are scheduled to arrive in Marin in time to meet up with our new landlord, do a walkthrough of the house and get the keys on March 1st. That is a Friday, so he is staying the weekend to get some things set and he will need Monday to do things like get our free P.O. Box because we are going so rural that we won’t even get regular mail deliveries (UPS and Fed Ex both come to the house).

My job in David’s absence is to get things like utilities and the internet set up so we can live like civilized people. We already had to change our phone provider from Ting (whom we had for over a decade and loved, but their wireless calling is tied to a mobile network and we don’t have cell service at the house either) which literally was a multi-day process, and not because of anything technical. Today I dealt with getting our propane deliveries set up. I am dreading PGE., so I am pushing that one off for last.

David flies home on the 5th to help me and the cats get ready for us all to fly out on March 8th. The cats have been to the vet, have had their rabies shots (and have their requisite certificates) and we have gabapentin for both of them to make the trauma of a cross country flight more bearable. And an anti-emetic for our Xena Malka who gets motion sick.

Once we get settled, David heads back to the airport to meet the movers on Astoria on March 15th. After a few extra days for our cleaner to come do a deep clean, returning keys, etc., he finally flies back to Marin where we can start settling in. Well, as much settling in as we can do until our crap–including all of the crap that has been in storage for almost two years–arrives at some date to be magically determined by the mover.

Footloose and Fancy Free

The thing about chronic pain is that when it goes away, everything feels so much lighter.

When I am in pain, it feels like weights have been attached to my body. It is just so hard to move. Today is my first (relatively) pain free day in a month and I feel like I have suddenly been set free. I can do and be again. At least as much as my current malnourished state allows.

How do I know that it has been a month? Funny story, that*.

You know how generic drugs are supposed to be bio-identical and work as well as each other and the name brand? Well, that’s not quite the case. In fact, it has been fairly well documented that some generics are just different, despite looking bio-identical to the generics that work. But it hasn’t gotten much press. I have seen maybe two articles ever. And one goes back so far that I read it while we were still living in Portland.

A bit more than a month ago, the pharmacy sourced the duloxetine I take to convince my confused brain that gut motility does not equal pain, from a different manufacturer.

Maybe it was a bit cheaper, maybe it was just what was available, who knows. but it happens all of the time at most pharmacies. No ill intent. Just how the generic wholesale pharmaceutical market works (as I understand it from those two articles I mentioned. I am in no way an expert on such things).

Anyway, over this past month, I have certainly noticed that the pain that the duloxetine had been managing was back. So much so that I am in conversations with my doctors about weaning me off the duloxetine and trying a new antidepressant. It has been a very bad month, pain-wise.

A couple of days ago, I refilled my duloxetine prescription and I immediately noticed that it was from a previous manufacturer. A previous manufacturer whose product had worked for me. So I was optimistic when I took the first dose of the refill last night. And today I feel amazing!

I am completely overdoing it today, and I know it. But I couldn’t help myself. It has just been so long since I felt this pain-free. I know that I will pay for it tomorrow, but I have no regrets. I am thinking about it as the very occasional decision one makes in middle age to screw your bedtime and hang out with your friends until late. You know you will be paying for it for the next few days, but are enjoying yourself too much to care about future you. And even future you agrees that it was well worth the cost**.

I have to give full credit to my friend Jemiah for aiding in the solving of this mystery. She recently went through the exact same issue and it definitely helped the penny drop.


*We have been rewatching Lucifer and I seem to have picked up some of his verbal quirks.

**Clearly, I am getting excited at the prospect of getting to hang out with friends again once we move!

Big News

Want to know what life with a chronic illness is like? We have big news. Like huge. But instead of excitedly announcing it to the world, I am spending my days in bed laying stiff as a board, because curling up in a fetal position, no matter how much I desperately want to, is just too painful.

To make matters worse, my presumably more communicative GI didn’t respond to calls over two days. he did respond over the portal (which I didn’t use initially because it says it is only for non-urgent issues and can take 2 days to respond). He told me what to do, but that was all. There is no indication that he called in the necessary Rx changes and he has failed to respond to my follow-up question for 24 hours and counting. I am considering myself ghosted.

This is where the big news comes in. We are moving to Woodacre, California in March. It is in west Marin County and is the most rural that I have ever lived. There is no mail delivery. We have to get a P.O. Box. Even the goat farm had mail delivery.

But it is not as isolated as it sounds. It is 45 minutes from San Francisco where there are world class medical facilities. It is also, where we can socialize outdoors 3+ seasons of the year. And the house we are renting has beautiful decks and a bathroom that we can isolate from the rest of the house. Guests can use it unmasked without putting anyone’s health at risk. Most importantly, there are lots of friends and family nearby to socialize with, those 3+ seasons of the year.

My point? Maybe my new doctors will be more responsive. I already have one doctor in place. He is a Naturopath with extensive experience with gastroparesis. He is located in Oregon, but he is licensed in California so we can do televisits. Worst case scenario? I have to make a trip up to Portland to see him. I am sure my friends will be crushed.

But not today

We have been back from the west coast for a week and I feel like…something bad. That is how badly I am feeling. I have lost my metaphorical skills. At least temporarily.

Seriously, the nerve pain that the cymbalta is supposed to be managing is back, and has been plaguing me for days now. This could be blowback from the travel or it could be a random flare. Doesn’t actually matter because either way, it is disrupting my sleep.

I have a call into my doctor (the new, more responsive GI) and am waiting to hear back. My guess/hope is that we change anti-depressants and the magic starts working again. And hopefully soon , because my tube is scheduled for replacing on Friday.

Catching Up

I know I have been particularly quiet lately. Part of that is the impact of travel on me. We went to the West Coast for a week and that wiped me out for the following week too.

Then things were nice and quiet so I started increasing my feed. This involves anywhere from 2-3 days when I am in pain and out of it, followed by a day or two of feeling ok before starting the process all over again. But it is paying off. I am now at 38 mls per hour.

As a reminder, the highest I have ever been was 54ml per hour and that was nearly 7 months ago. And it was not my goal nutrition rate. It was just as far as I had gotten in my upward titration.

In fact, my GI doesn’t even know what my target rate is because I have just never reached it. The target she ultimately chooses in consultation with her nutritionist will include allowing me to drop down from feeding 20 hours a day to feeding 18 hours a day. Which my jejunum will appreciate. But I probably won’t learn that number until I see her next given the speed at which I am going.

Speaking of my GI, Etisarap is getting a new look. On February 2nd, I am getting my tube replaced with one that will need regular changes every 4-6 months. My current iteration will reach a year in February and that is its general lifespan.

Going forward, with this new style of tube, my tube changes will be able to be done without anesthesia by the interventional radiation department. Nope, I didn’t know such a thing existed either. And yes, I am damn grateful that I have Mary to navigate how to get those swaps done.

In other news, we went to visit my in-laws in Boston over Christmas where we tested my limits and, well, wiped me out for the following week. Next week, we are heading off to the Bay Area to see family and friends. But we are getting to be more strategic and extended the trip to give me some recovery time in the middle. We will see how that works out.

My brain is ever-so-slowly beginning to catch up with the additional nutrition, but instead of doing something useful like allowing me read or knit, I am just getting emotional waterfalls that I am not yet equipped to deal with. So I have periodic meltdowns about things over which I have no control. Not the funnest way to spend an afternoon.

That is the short and the sweet of it. I am planning/hoping to start posting more regularly again, even if they are just short posts. But I know that will be a struggle even as I write this. Travel just truly takes it out of me. You probably won’t hear much out of me until I have recovered from the Bay Area trip, but I will try.

Feelings, nothing more than feelings…

This has been a busy week. I broke up with the uncommunicative GI because I now have a new motility doctor whom I see next week. It was a mutual parting, as I got the sense that he was not unhappy to see me go. Regardless, it is done.

I finally had a follow-up with the neurologist about my MRIs and he deemed me fine, but with an aging neck. Fair enough. Since we had the car out, we drove to our favorite kosher bakery and got sufganiot (jelly donuts) for Chanukah, as well as enough treats to literally last us a month!

And if that wasn’t enough of a day, that evening, we went to a Chanukah candle lighting at Athens Park, surrounded by statuary. Please take a moment to appreciate the irony.

Anyway, I also walked a fair amount (for me) that day, going to and from the garage and I walked part of the way home from the park. I was exhausted the next day, but seriously, Go Me!

I have also started walking stairs on the days that I don’t go outside, unless I feel really crappy, then I listen to my body.

In some ways, it feels counterproductive to me to expend calories on exercise when I am barely just beginning to scrape by with something nearing a sustainable daily caloric intake. I wonder what I am trading off. But I think the movement is important and after two years of this shit, my muscles have definitely atrophied a fair amount. So I walk what feels comfortable that day. Sometimes more, sometimes less. But always trying to push myself just a little, but not too much.

The big news of the week was that my niecelettes turned 16!!!!!!!!!! I have so many Feelings about that. The important thing is that they are impressive young women (eeek!) who have so freaking much to offer the world. I am super proud of them and love them so much.

The following day, Facebook, in its infinite wisdom, showed me a memory from 16 years ago, of Natalie on the day she was born. Exactly my thought. What a journey from such a tiny newborn to the woman she is today. This Sunrise Sunset Moment has been brought to you by Facebook.

Progress!

I haven’t been up to posting in a while. First I was recovering from our trip. That took a while. Then I really started seeing the benefit from the Nerva hypnotherapy and the Cymbalta.

The pain that has been a constant presence for the previous 6 months had quietly moved into the background until it just faded away. If you have even mild IBS (what it is labeled for) or gastroparesis (what I used it for), I cannot recommend Nerva enough. Available on both the Apple and Google app stores. Worth the $149 and the 15 minutes a day. Truly.

With the motility pain gone, it was finally time to see if I could start increasing the speed on my pump. In just a few weeks, I have gone from being stuck at 25 ml per hour, where I had been for months. I am now up to 33ml per hour. And based on how I am feeling today, we will stay here for another day or two before I am ready to increase to 34ml per hour. It is slow going. But, it is progress.

My body is responding by storing all of those new calories because I am gaining weight again. I don’t know for sure that this is the case, but I think it is the cymbalta. I gained a whole bunch of weight when I went on it the first time.

I am almost up to 1,000 calories a day. Sadly, since so much is going into storage, I am not getting the benefit of those new calories. I remain stuck in limbo where I can only knit a couple of rows on really good days. I want more functionality. But wanting is not enough to make it happen, so I will just have to go back to radically accepting my reality and go back to being patient.

December is a month of GI visits, as I have appointments with 3 of them. Including my tube GI. I am planning on asking her again about when I am due for a tube swap. I am not eager to get rid of the one I have. We have a working understanding and it doesn’t cause me undue pain. But it feels like it may be getting a bit worn out. I would rather plan a tube swap than wait until the tube flips or there is some other emergency. We will se what she has to say.

We are home

…and jetlagged. So today’s post will be comprised of a bulleted list of facts in no order whatsoever.

  • It was beautiful.
  • The PNW will always feel like home to me.
  • There were many birds. Notably Buffleheads and Bald Eagles.
  • We saw a sea lion taunting birds with a fish in its mouth. Presumably trying to upgrade its meal from seafood to fowl.
  • Their trees had better colors than ours right now.
  • It was exhausting.
  • Not so exhausting that we aren’t already discussing our next trip.
  • Our friends harvested delicious Eva-sized apples from their trees.
  • We were sent home with apples in many forms, including sauce and chutney.
  • It was really nice to get to hang out with good friends for a week .
  • It was a relief to be able to hang out indoors without having to mask up (we followed agreed-upon covid safety protocols prior to and during our visit).
  • We had an amazing time.
  • Xena Malka is making me end this list now because I abandoned her for a week and she needs her scratchies now please and thank you.

And Away We Go?

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.

The Better Option

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.