In Which Humble Pie is Eaten, Along with Cookies (or “The Adventures of Radioactive Man and Fallout Boy”)

It turned out that Sarah had long-ago scheduled to go away this weekend as well, and my memory being what it is (more like a steel sieve than a steel trap), I had forgotten until two weeks ago.  So all of a sudden, I found myself with another opportunity for a civilization game!  Hooray!  That one which I had thought would be the last pre-kidlet would merely be the penultimate, simple, cozy, and all could be right in the universe.

I invited a bunch of folks, most of whom hadn’t been able to make it to recent games, and one of whom has a gluten and soy intolerance, necessitating calling the amazing chosenbites.com: two dozen soy-free, dairy-free, gluten-free cookies made of pure awesomeness would soon be mine!  Muh-wah-hah-ha-ha!!  The chocolate chip cookies are great, but the ginger snaps are magnificent.

Of course, Der Menscht trakht und Gott Lakht (man plans and God laughs), or “life is apparently what happens while you’re busy making other plans” (John Lennon).

I ended up in the hospital this week for unexplained vomiting which the ER docs thought might be my gall bladder due to a worrisome ultrasound.  An amusing side note: Sarah posted a note to Facebook mentioning that we were in the hospital and mentioning “ultrasound” -and apparently a bunch of folks thought we were there for her which thankfully was not the case (I had a bunch of folks tell me that they were glad it was me and not her – me too!).

Sibley Hospital is still really nice, and their staff is still the most pleasant of any hospital I’ve ever been to.  However, I think with their purchase by the JHU team, they’ve now been discovered by some of the rest of region- the ER was actually really crowded and we had a multi-hour wait (which is much more typical for the region).  The staff said they hadn’t seen it that crowded before.

They kept me there for about a day and a half on some saline, Phenergan and some IV antibiotics.  Interestingly, the nurse told me this time about some people’s complications from IV Phenergan, and that they try to use Zofran instead, but I’ve never had the slightest benefit from Zofran.  Looking now at the pharmacological differences, that makes total sense – they work on completely different receptors, and one of Zofran’s known side effects is headache (while I’ve gotten Phenergan for migraine-triggered nausea in the past).  Anyway, I was kept NPO because the ultrasound and physical exam showed me as a possible surgical candidate.  It’s like Tisha b’Av, but colder!

So they performed a HIDA scan, which was my first exposure to nuclear medicine.  I was injected with Technetium-99m (and some other goop), and told to lie very very still for about 90 minutes. Frustratingly, Sarah was not told how long this test was.  Happily, I apparently studied hard, because I passed this test with a negative, and managed to avoid surgery.  The half-life of the Tc-99m is about 6 hours, so it should be quite gone by now, but I figure I did a reasonable Tony Stark impersonation for a while there, so at least that’s some geek cred.  I had a good time talking to the doctor about how the detector worked and what it was showing.

Sarah did a heck of a job taking care of me through this – I fast really poorly, and so my ability to think straight was reduced.  I can’t say enough how much that meant.  She’s the best.

After they reviewed my results with me, they let me eat (I have never been so happy to see a hospital TV dinner in my life) and let me leave.  They didn’t punch my frequent-flyer card.

But then came the game!  Sarah decided that she was too wiped out from taking care of me to travel for multiple hours each way (and enjoy where she was planning on going) so she stayed, but because she is awesome, she was ok with Civ happening anyway.

The game was shorter than usual, and ended one turn earlier than we thought we would – one player needed to leave, and we called it then.  I got the first civil war early on, and then an iconoclasm & heresy in the last turn took me down to two cities in the final round.  Ouch!  Africa was our bye country, and interestingly, that was precisely what rebelled during my civil war, and I never actually rebuilt any cities there.

Final scores:

Italy: David: 1336

Illyria: Merideth: 1655

Thrace: Erin: 1642

Crete: Michael: 1853

Asia: Toby: 1585

Assyria: Rich: 1534

Babylon: Shoshana: 1933 (winner)

Egypt: Larry: 1425 (new)

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garlic-ring pineapple fried rice (no added salt/gluten/soy free)

one wasserman & lemberger garlic ring (like a bratwurst)

one can pineapple tidbits (or chunks, but cut the chunks in half).  Drain, but reserve the juice.

bunch of scallions

2c cooked white rice, chilled.

three halves of peppers (red/yellow/orange) chopped finely

one onion, chopped finely

three cloves garlic, minced.

sriracha (optional)

 

I needed to make a dish with no added salt, gluten or soy for a fleishig meal, and didn’t have time to make it to a market for many ingredients – I think this experiment pretty much worked, so I’m preserving it.

I don’t have a wok, so I had to use a flat-bottom skillet.  Chop the garlic ring into bite-sized pieces.  Sauté the garlic ring, and that will produce grease for the pan.  After the garlic ring is browned, add the onion & garlic until the onion begins to get translucent.  Stir often because it will tend to stick.  Add the rice, stir often.  When it starts to stick to the bottom of the pan, add a little of the pineapple juice.  Repeat this for about 7 minutes or so.  Add the peppers, most of the scallions and sriracha, continue frying until they start to soften, and then add the pineapple and the juice.  Cover and reduce the heat until the liquid is absorbed.  Garnish with some of the green parts of the scallions.

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Where I’ve Been

I haven’t been writing much, for reasons which will become obvious. Last year, I tore a tendon and ligament in my right elbow, and went through a whole set of trouble trying to do something about it. Early this summer, Dr. Ibrahim gave me some unpleasant news about this: my two courses of prolotherapy and one of PRP had fixed the tendon and UCL well, but the pain was continuing, and the culprit was that I was continuing to injure the arm due to usage patterns. He warned me that if I didn’t take care of this, I would end up permanently disabled, which was a remarkably ice-water-to-the-face sort of wake-up call. Obviously, drumming (impact) and riding a bike (vibration/impact) were out, and guitar is only doable in small amounts as directed by a PT (my current allotment is 10 minutes at a time, once per day)

He wanted me to get an ergonomic assessment of my home and work environment, and improve those to avoid the repetitive strain problems, and sent me to PT to try to improve it. After fooling around with Georgetown (who have a hard time understanding what “closed chain” means – the stuff they had me do was thera-band open-chain, and could have been making me worse), I got a better referral, and happily Dr Gnip knows what he’s doing.

But the upshot of the assessments were that a whole lot needed to change, and to an extent I’ve not wanted to talk about the impact because the means making it real. But the furniture is ordered (due on Wednesday), and so it is.

I converted half of my baker’s rack of music equipment to a makeshift standing desk immediately after getting the wake-up call, but now I’ve got a real standing desk coming, and that’s going to displace the music gear for real.

I’m sad about this: the last three years of medical problems have really gotten in the way of playing music, and now it feels like that’s going to get even harder and less likely. Obviously all of the rational reasons to use this space for the desk are correct, but it still feels like closing a door. I’d rather have an option which didn’t involve having to make that decision, but I don’t.

Perhaps this will lead to some greater and better or more use of that room downstairs – as a library, playroom, or something entirely different. For now, though, I need to recognize the loss of how things have been – no matter what, it’s going to be different, and I’ll have to accept that.

Ping… Echo Reply

There are times when “fake it till you make it” is the operative thought process. There are some things in life about which I admit total ignorance. Occasionally, these are the same thing.

A very long time (so it seems) ago, Sarah had heard from friends that getting a fetal doppler was reassuring, and our experience was that the ultrasound at clinics had been able to detect the heartbeat at 5 1/2 weeks. So we purchased one at 8 weeks, and this thing caused no end of trouble. The how-to videos on YouTube were no help whatsoever – apparently people only post videos when it works.

After hearing a whole lot of nothing with it, I was convinced that the unit we had was a piece of junk. At 9 weeks, our RE tried using it, and also couldn’t hear anything, seconding my opinion (although he said he had never had any luck with any of those). The trouble was that it had, when we used it at home, worked me up into quite a lather, while I was trying to reassure Sarah that, yes, everything is okay(tm), but it introduced a gnawing fear into my night until our next visit.

So it went into the drawer, until our 14-week appointment with the regular OB, who used one which looked remarkably like the one we had purchased – he found the heartbeat in all of about 12 milliseconds. He then showed us that our unit worked fine (!)

And so finally this week we’ve figured out how to use this thing ourselves, and can hear it fine (and it turns out that, according to real doctors, 13-15 weeks is around the time that one can actually hear a heartbeat.

My lesson is that things only work in the right time, and doing something at the wrong time leads to trouble.

Exiting Radio Silence

There is a Yiddish saying: Man Tracht, und Gott Lacht, which could be translated as “people plan, and God laughs.” I think that’s about right.

On April 14, I wrote about how Sarah and I were giving up on the fertility meds and moving to IVF. Earlier that month, after the last failed cycle of the injectables, the nurse at Columbia Fertility (CFA) had told us that due to cysts (open follicles) on Sarah’s ovaries, the month after that cycle would also be a dud as well – thus, we would need to wait for the cysts to go down before IVF could start, and of course, their presence is expected to prevent regular ovulation as well.

I need to say a few words here about injectables. So those are basically a percentage of the same medicines as are used in IVF, but you’re basically relying on timed intercourse to try to get everything in the right place at the right time. Now, the problem there is that the husband ends up being something between a trained monkey and porn star (which is far less hot than it sounds). So with all of this, I can’t say that I had such a warm fuzzy feeling about how those work. In fact, those are definitely part of the “affliction” to which I had been referring.

Anyway, the injectables tended to be “one month on, one month off” because of cyst development (and continued use at that point would be dangerous). So we booked a bunch of appointments for IVF consultations, and decided that this was where we needed to be going. We met with Dr. Frankfurter at GW, and I must admit that all of the Rocky Horror jokes were running through my head the whole time (“Come up to my lab… and see what’s on my slab…) – none more than when he said that his main embryologist was named “Dr. Scott” (Brad! Janet!) (Note: Studio Theatre is showing Rocky this year – can’t wait!)

However – remember that I wrote that piece on April 14.

On April 29, we learned that Sarah was pregnant.

When we went in to CFA to confirm the pregnancy, Sarah asked “how could this happen??” Dr. Sacks replied, without missing a beat, “I think sex.” Oh, you scamp! That was too early for a non-IVF sonogram, so we went on about our day.

We decided to keep our appointment with RMA in New Jersey – they take forever to schedule, we had filled out probably three inches of paperwork, and honestly, having lost three pregnancies relatively early, we took a cautious view of chances, and at the least, wanted to find out what we thought of them relative to the folks in DC. Dr. Drews in NJ was amazing. I don’t hesitate to say that if we ever do need IVF, that is totally where we’d go, and that’s where I’d recommend anyone else go. I am blown away by their approach – they basically look for all of the various and sundry ways to get each extra .25% improvement in outcomes (like “use this particular type of air filter in the lab”, “use only this particular type of lighting”, “perform transfers only at this particular stage of development”), and then do them. The net effect of all of those little things is that their actual success rates are dramatically higher than clinics in the DC area – for women Sarah’s age it’s over 46% (national average 32%) (by way of comparison, CFA’s success rate for women Sarah’s age is 29%, and GW doesn’t brag about their statistics online, but according to what they’ve published to the CDC’s ART report, their success rate is 21%). According to Dr Drews, RMA doesn’t turn any patients away (we had been told that their numbers were the result of patient selection, which from my perspective he refuted).

They did say “most people don’t come here when they’re already pregnant,” but the consult was very informative. Dr. Drews did our first sono, and was excellent – he warned us that it was early and we might not see/hear anything, but he wanted to get a baseline (apparently this is standard of care for a first appointment there – which is also impressive). And there was the heartbeat!

w00t!

But of course, we’ve been there before. And so, the fear began (along with prayer).

When we got back, we resumed working with Dr. Sacks – he had been our regular RE at this point: he told us that the genetic/chromosomal die had been cast already (true!) but there wasn’t any way for us to know how it fell for a while, but he would monitor us closely. Each appointment was nerve-wracking, but the heartbeat was strong. Apparently “made with love and science” was going to be more like “made with love, watched closely with science.” Maybe the s/he will have a future with the NSA?

So we’ve had a whole heck of a lot of ultrasound pictures of the stringbean-variety – not the ones which look like a kid (those are the 20-week anatomy scan), but oodles of early ones. The jarring moment happened when we got to about week 12 – we were discharged from CFA and sent to our OB – that had never happened before. Now we had to go from the high-touch world of “lots of imaging, can we buy a sonogram machine for the house like Tom Cruise?” (answer: no, they’re regulated medical devices) into the normal-pregnancy world of “I wonder if everything is okay?” which is of course the world in which most women (and men!) are 99.99% of the time.

But it’s an awesome kind of jarring.

We went back and forth on when to start telling people – we’ve previously been public very early, but this time decided to wait a bit longer. However, one practical component is that apparently pregnancies after the first show much faster than the first, and a comment we received from a family member upon seeing a picture was “I don’t know who you think you’re not telling.” Well all-righty then.

We’re due January 1, 2014 – sounds like a great way to start a new year (or, perhaps Dec 31 would mean that the IRS would be nicer to us this year). Then again, I was multiple weeks late (setting a pattern for my life), so who knows – Elvis Presley’s birthday is January 8…

So now we can just thank God for bringing us to this day, and count on Him to sustain us in the days ahead (and perhaps try to save up on some sleep a bit).

One ligament to bind them

Last Thanksgiving, I spent hours making a tasty onion recipe and then when I handled a turkey at arm’s length, I felt a “pop” and my neck and elbow started to hurt like crazy. I treated this on my own for a bit, and then eventually saw my regular physiatrist, who diagnosed me with tennis elbow, gave me an OT routine and a brace, and told me to otherwise rest (making me completely nuts).

Rest was making me nuts because it was no biking, no exercise, and worst of all, no drumming! Augh!

So after roughly four months of that, a cortisone shot, and some custom bracing, I still wasn’t getting better. I also was getting really frustrated because the treatments and descriptions of tennis elbow all referred to wrist-based flexion problems, and yet I was also having pain when I did things with my wrists In a neutral position (like tie my shoes, lift a glass, or pull my pants up).

So the OT gave me a referral to a different physiatrist who did sports medicine – Dr. Victor Ibrahim, who is the doctor for DC United, and of course his is a non-insurance practice.

But when we went in – I had asked Sarah to come with me as a second pair of eyes – I noticed a difference: I described my history and asked “what treatment should I be doing?”

His response was “well, when you have a treatment which isn’t working, either you need to change the treatment or you have the wrong diagnosis. Let’s confirm your diagnosis.”

And so we went to the ultrasound machine, the first imaging used in the $5000 of treatment I’d had for this elbow, and he said almost immediately “I see the issue- your tendon is inflamed, but the one below that – the one which controls pinching motions of the fingers- it’s torn through” and of course no amount of OT will rehab a torn tendon – it will generally make it worse! He kept looking, and also saw that the ligament at back of my elbow (the UCL) was also torn through- he showed this by pulling my arm while under ultrasound- you could see inflammatory goop shoot out (ew), and even visually you could see a radical difference between my right (bad) and left (good) arms- my right arm basically looked like it came out of joint. Dr. Ibrahim said that this sort of damage probably built up over a while, so it wasn’t like this was something which I had done in the last four months while attempting to rest.

So this is a spectacular misdiagnosis, and is exactly the type of thing which could have been prevented (along with spending thousands of dollars of my own money, and thousands of dollars of UHC’s money) if the diagnosing physician had used imaging. Now, I know that there is a push to do exactly the opposite in the name of cost reduction, and that’s one of the reasons why I thought it was so important to document precisely what happened here: lack of information at the outset led to an incorrect diagnosis, led to lots of expensive, ineffective incorrect treatment (and lots of patient suffering).

So back to Dr Ibrahim. He gave me some options, which he listed from most invasive to least invasive:

  • I could have a Tommy John surgery, guaranteeing that I wouldn’t have a 95 mile-per-hour fastball ever again (because that is a worry- I’m certain I can get at least a 9.5 mile/hour fastball within a radian of my target…)
  • I could have a stem cell transplant, where they perform liposuction, spin off the fat, do some magic and turn it into stem cells which regenerate the tendon and ligament. Science!
  • PRP – he recommended against this because spinning my own plasma and injecting it into the joints could further spread babesia and Lyme, which meant that he got a gold star for caution in my book
  • prolotherapy – this is an injection of dextrose into the ligament and/or tendon which can trigger an inflammation and cause healing. Mechanism of action is unknown, but hey, it is with aspirin too, so not such a shock.

Sarah has had both prolo and PRP, and they’ve done wonders as stabilizing her pelvis is concerned, but she described them as excruciating.

Dr Ibrahim offered me these choices, but recommended prolo- and amazingly, when I accepted that option, was willing to do it right then (!) and doesn’t even charge for it (!!) [his argument is that the cost of dextrose and a syringe is next to nothing, so should be included in the office visit]. So I had a few shots, and they hurt about as bad as you would expect a gigantic needle being shoved into a torn tendon to hurt- which is to say, OW. I’d put it about a 5 on my pain scale, but that’s only because the testicular torsion blows everything else out of the water as a 9 (I presume 10 would be my head spinning around Exorcist-style).

So after painful things it takes me a few minutes to recover, so I was lying down, and Sarah was talking to Dr I about the pain in her arms, and her Lyme disease. He said, “let me take a look at those” (!!!) and proceeded to ultrasound her arms (the first imaging ever done on her arms, which have caused her disabling pain for 7+ years) where he then said “I see a whole lot of scar tissue- this looks like the type of stuff that can be caused by infectious disease- this looks excruciating”. At this, Sarah started crying, because this was the first real validation she had ever gotten that there was an actual physical, measurable, objective source for the pain she has been in for most of a decade. The real kicker was when he said:

there is something we can do to remove the scar tissue and make you feel better.

Holy $h!7! Really?

The treatment is called a debridement, and basically it’s an injection of some goop which dissolves scar tissue and allows the body to function normally.

Woah.

So we scheduled a follow-up- a joint appointment where Sarah would get a debridement and I would get another prolo if necessary (expected). That was last week.

I had my second course of prolo- it turned out that my UCL only needed one (yay!) and my tendon seems to be doing pretty well. Sarah, on the other hand got under the ultrasound, and her sinovium lit up like a Christmas tree – Dr I said that this was likely active Lyme. He said that the risk of doing the debridement when the infection was live like that was really high, and could leave her bedridden, which would be intolerable, so he had to delay her treatment. Mega-bummer.

But it does impress me all the more, that here you have someone who was all ready to perform a weird procedure on someone, and then didn’t, because he didn’t feel like it would be in the best interest of the patient. Yay Hippocrates!

And He saw our affliction

And He saw our affliction (Deut 26:7) This refers to the disruption of family life as it states, “And God saw the Jewish people and God knew.”
Passover Haggadah

It is no news that Sarah and I have been going through the amazing suck-fest that is infertility for the last several years.

There’s a lot of moments of trying to hold it together while acquaintances are gushing about the latest {pregnancy | childbirth}, (the friends mostly don’t do that to us) and there’s the pit in the stomach that comes once that gets started – the sense that this is not going to be a good night. There’s the intrusive medical stuff – shots, pokes and prods, testing, monitoring and sampling, the mind-numbing expense of it all, but the worst for me is the question of why God puts this particular barrier in our way – given that the first commandment is to be fruitful and multiply, how is this fair at all?

And then I beat myself up for asking about fairness – because honestly, I’ve had more than my share of blessing in this world, and “fairness” would mean that all I should get is an unmarked grave. Didn’t the patriarchs and matriarchs all face this? Yes, but according to the text they were pissed off too, so maybe that’s okay.

So what’s new in this is that Sarah and I have finally come to believe that IVF is the way we need to go. Sigh.

There’s perfectly valid medical reasons for this, and we’re investigating multiple options for clinics.

Now, this morning, I mentioned this to someone, and s/he told me “you can always adopt”. I presume s/he was trying to offer helpful advice, but s/he was actually being extremely hurtful. I pulled him/her outside and corrected him/her privately, and let the person know why that was such an unhelpful suggestion.

First, neither Sarah nor I are genetic snobs – we both believe that love is thicker than blood. I learned this from my maternal grandparents zt”l (may the memories of the righteous be for a blessing) – our family would routinely pick up “strays” for lack of a better word – family friends, distant cousins, in-laws, out-laws, etc, and then a gathering just wouldn’t be complete without them. This is a characteristic of my grandmother in particular which ranks her as a person whom I want to emulate – she and my grandfather are two of the finest human beings I’ve ever known. Sarah and I have long said that we want to be parents more than we want to be pregnant, so adoption was certainly not ruled out.

That said, adoption does have challenges, and only a fool would ignore that, so we had looked at it as a “second” choice, but preferable to IVF, when we started having miscarriages two years ago. We went to an informational session at a local agency (not linked for their privacy), and what we learned shocked us.

We had always thought that there was this vast number of children waiting in orphanages to be adopted, that there was a need for parents to step up, and that the real challenge was just getting qualified as an acceptable home.

HAH!

We could not have been more wrong.

So it turns out that in truth the number of infants who are adoptable in public adoptions (and by that I mean by non-relatives, via agencies), is a tiny fraction of the number of parents who are waiting in line to do the adopting. That agency we went to was one of the largest in the Mid-Atlantic region, and they placed 40 children in their busiest year recently, with a more typical year being closer to 25.

According to an adoption advocacy group (you have to dig for the number here – it’s table 1, column 7), 22,291 infants in the United States were placed for adoption in unrelated domestic adoptions. (Statistics on adoption are extremely opaque for some reason, and get aggregated in ways which obscure that truth).

By comparison, according to the CDC, the various types of Assistive Reproductive Technology (ART) which includes IVF, IUI, and procedures which happen in an office but does not include fertility injections or pills, 61,610 infants were born as the result of ART in 2011.

So adoption is actually, from a statistical point of view, not a better bet than IVF.

So why was it so bad for him/her to suggest this?

First, it was unsolicited advice, which honestly isn’t welcome on touchy, sensitive subjects. I don’t know how other people who are going through infertility feel, but as for me, I’m mourning the loss of some innocence – that something which I thought would be easy is going to not take climbing a mountain – it’ll take picking up the mountain and walking under it.

Second, the adoption agency said that you have to “market” yourself – you have to “sell” yourself to the birth mother, who will select your family from several families who are presented to her. So you’re competing with other families who all have similar if not the same dream of being parents, and remember what I said about “fair” before? Well, that applies here too – so how can I feel good about competing with other people in a way where if I win, someone else loses their dream? Geez, that’s horrible. That’s zero-sum thinking at it’s worst, and yet I can’t seem to escape it when thinking about how the agency presented how you have to behave. The agency (and everyone we’ve talked to about it) says you basically have to be willing to throw the extremely sharp elbow to be successful – you have to be completely focused and goal-oriented, and willing to be “that guy.” Even if you go the “hire a lawyer to do a “private” adoption, you’re basically outsourcing the problem of moral agency – I’m asking someone else to throw the sharp elbow on my behalf.

I’m not willing to rule it out – I won’t say I wouldn’t adopt, but after that info session, it dropped to the bottom of the pile below IVF.

Third – and this doesn’t, fortunately, apply to us – there are lots of couples where one partner is okay with adoption and one isn’t – the same is true for any other particular technology (egg donor, sperm donor, IUI, IVF, blah blah blah) – so saying “you can always do X” can be twisting a knife into someone who is already experiencing marital strife – and this is a painful, painful issue.

I can’t really explain the depth of feeling to anyone who hasn’t been through it – it’s experiential and awful, and can become consuming.

We’re happy to hear individuals’ experiences regarding their own journey, but suggestions like “have you tried relaxing” and the like are so profoundly not helpful, and in fact are hurtful.

So God willing, we’ll be able to say that we’d have children made with love and science.

Why do fast days go so slowly?

I was up late last night: The Franchise is back to recording, and we got an okay basic track for Don’s newest song “Best Day of Your Life,” although I don’t think that will be the final one we use. After that, Sarah was talking to an old friend whose mother is in hospice, so that was very emotional. So the upshot of this is that this morning I overslept, and it was only after I awoke that I remembered that it was Ta’anit Esther (the fast of Esther).

Normally, I prepare for fasting: I wake up early and have breakfast, with the all-important coffee and medication, and the day before I hydrate a bit extra (rather than drinking beer & rye with the band, which tend to dry one out). So my immediate reaction was “uh oh, I screwed up.”

Now, minor fasts (of which this is one) are just that: minor. If someone is sick, they don’t have to fast, and the bar is pretty low. But inherently, the lack of planning was my fault, not just some random thing, and I figured I’d give it a go.

Happily, I made it. This I see as a testament to my continued recovery from Lyme et al – it wasn’t so long ago that I wasn’t allowed to fast on major fast days. So this is a good reminder to be thankful for the blessings in life: I should not let perfect be the enemy of the good.

Gilbert’s Sour Grapes

pb130217

I think I’ve determined part of why things have been weighing so heavily on my the past couple of weeks:

lateral epicondylitis (or “tennis elbow” for those of you who chose to study more widely-spoken languages than Latin).

You see, the past two years have been a shrinking circle of possibilities as illness steadily took from me most of the extracurricular things I enjoyed doing (with occasional reprieves) – writing got hard, playing music was out, exercise was out, my various and sundry volunteer work was out, and even having the stamina to do reliably do pretty much anything was out. Layer on top of this the pregnancy loss and infertility business, and those years rightly sucked.

So I’m finally in remission. Yay! Back to bicycling, back to music and it seemed like life had finally turned the corner. However, the lingering effect of the illness is a radical deconditioning, so in doing food prep for Thanksgiving, I managed to injure my tendon because my muscles are so weak. So now, my OT has me on a “rest” program which effectively means that all of those activities are back out again. ARGH!

So no exercise and minimal extracurriculars – this is thoroughly dispiriting, and it doesn’t help that the supposed proto-Spring we have now is cold enough that I have to check my driver’s license to remember my gender. Worse, when I’ve asked how long this “rest” needs to last, the answer is “until it doesn’t hurt” – which is of course a wholly untenable answer: I’ve learned that waiting for things to stop hurting does not work – immobilization does not allow for beneficial hormesis to occur.

So taken together, all of this is a big pile of discouragement. But there are a couple of rays of light: in the aftermath of Sarah’s concussion this week, some friends took care of us, and that was lovely; and I’ve finally gotten an appointment with a sports medicine physiatrist (who treats the DC United) who can hopefully get me back to functioning.

Heck, Maker’s Mark put their bourbon back to the original recipe, so maybe I can move away from Rat’s view after all.

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Side note – the Binyamina Bin Cabernet Sauvignon 2010 is absolutely fabulous.

Back in the Saddle Again

20121203-075535.jpg

So with being in remission (yay!) comes several things: beginning the process of weaning off of my painkillers (I expect to be at zero schedule 2 narcotics in 28 days), dropping the other meds one at a time (bye bye atovaquone!), and general improvement in my overall well-being.

But the big improvements are twofold:

First, The Franchise is practicing again, and resuming work on our fourth album, tentatively titled “Movers and Shakers”. Boy I’ve missed this. There is something wonderful about getting to hit something and call it music, but I sure do feel the rust: my lead guitar skills have deteriorated quite a bit, so I’ll need to do a lot of work to bring that back.

Second, I got my bike from the basement of the Alamo (it’s a Trek Allant hybrid), and have embraced the full urban-dork cyclist phenomenon (panniers, oodles of neon, flashy lights, etc), and finally I can start really living my ideology about driving a lot less. Whoo hoo!

I have already learned one lesson about the big scary world: I parked in a stairwell at a doctor’s office (and got yelled at) but had someone try to swipe my front wheel (the fender was half off, and the air had been let out of both tires). The $30 anti-theft pins already paid for themselves! Another lesson is that the top of a single cart at Trader Joe’s fills up both panniers, and is REALLY heavy.

But it’s good to be back.

Turning the corner*

I was diagnosed with Lyme disease, along with Bartonella, babesia, protomyaxzoa, and a wicked strep, following a spectacular parvo infection nearly two years ago. It took a whole lot of painful, expensive testing to figure out what it was – spinal taps, EMGs, MRIs, oodles and oodles of blood tests, For these two years, my life has been on hold – I went through periods where I could not drive, periods of (what’s that word again…) aphasia, a sensitivity to vibration which was so severe that using an electric razor was not possible (and a straight razor was not acceptable according to Jewish law, even under these cases) so I was using depilitories (which largely didn’t work and ripped up my skin instead). I had to quit playing music, bicycling, exercising, and had to get used to saying “no” a lot.

In the middle of this, my father-in-law died, Sarah and I suffered three miscarriages, and I had an unrelated testicular torsion (which redefined my pain scale along with being completely humbling).

So now, after all that awful stuff, there’s something amazing:

my doctors (cautiously) think that my Lyme (et al) are in remission, and so I’m now being moved to the “wean off of the hideous treatment” protocol, rather than the “kill it dead” protocol.

41 cm of “not in my arm anymore” PICC line.

That picture is the PICC line that was removed from me on Friday – I was going to say “removed from my arm” but really it was removed from a lot more than that! Showering no longer involves plastic wrap and tape! As an aside for anyone else who gets a PICC line and is trying to figure out the whole shower rigmarole, first, shave your arm. After that, use regular plastic wrap relatively tightly around the site, followed by press-n-seal over-top of that (but the press-n-seal needs to attach to skin), and then use painter blue tape to seal up around the edges. Make multiple passes with the painter tape. Not having to do that means that easily 20 minutes got taken off of my morning routine. Yay!

Today at the synagogue, I said the prayer recited after recovery from illness, birkat ha-gomel

הגומל לחיבים טובות שגמלני כל טוב

which is normally translated “[Blessed is God who] bestows loving-kindness upon the culpable/guilty/unworthy for the good, for He has bestowed completely good loving-kindness to me.”

The thinking is that everyone has done something for which they could be culpable for Heavenly capital punishment, and a recovery from illness means that God decided not to exact that punishment upon us this time.

And just like that, a cloud has lifted from me: yes, there are still things wrong; infertility still sucks in spectacular ways, I still have a lot of drugs to wean from (Atovaquone [Mepron] is next), and I still have back trouble, but right now, I feel better than I have in years.

*The title of this post puns on the old name of the Lyme disease activist group “the Turn the Corner Foundation,” which has since become The Tick-Borne Disease Alliance. They are a good resource.