Hypersensitivity pneumonitis – lung thing part 3

Some mornings it’s just hard to leave for work.  Looking at the NE corner of the property.

So a quick (I promise) recap.  This all started in November 2014 and has been a roller coaster ride of symptoms and medical care ever since.  After my initial diagnosis (now revised) and treatment, I was feeling good by September of 2015.  In late November 2015 some of the symptoms returned (shortness of breath, primarily).  I managed this until late February of 2016 with ibuprofen, until I needed more help.  I saw the specialist in March and began a regimen of prednisone.  A lot of it to start, then tapered down after 10 days, then tapered again after 30 days.  But still a high dose.  I’ve been on this dose since April and have been feeling good, with breathing back to normal and heart rate also returning to normal (since my lungs are working, my heart doesn’t have to hit overdrive to pump more blood in an effort to oxygenize).

Groot the kiwi vine trying to swallow the front porch.

Allergy testing last year showed I have no allergies – no surprise there – but the specialist, in drilling in on the hypersensitivity pneumonitis rediagnosis, performed antigen testing (IgG vs. IgE), which showed I was reacting to bird feces and proteins, as well as a couple of molds, so my particular brand of hypersensitivity pneumonitis (HP) points to Bird Fanciers Lung (there are dozens of versions).  I was told I needed to remove chickens from my environment, as well as my two parakeets (cage birds), and clean the house thoroughly.  The molds are likely ones I’ve run into with the hay I feed the sheep.  Antigen reactions are essentially allergies, but manifest differently (in my case there was absolutely no coughing, runny nose or sneezing typical of allergies).

The days are getting decidedly shorter.  After getting home from work in the evenings I barely have time to do the evening chores before darkness falls.  So sad. 😦

I saw the doctor again in late May, when I repeated my tests and did well (breath tests as well as a walking test to see how well oxygenated my blood stayed with exercise).  The doctor was pleased with my progress, and very happy to hear I had rehomed the parakeets, but because I still had the chickens, and she was concerned I needed more time on the medication, we stayed at the same dose of prednisone.  I told her I would hire help to get the chicken coop thoroughly cleaned out and let the flock “attrition out” – the birds are aging and not worth anything, so not easy to rehome (there are 21 of them right now).  I lost one over the summer, but of course they seem to be feeling spry, even if they’re not laying much on the expensive organic feed I give them.

Hops!

The entire harvest of hops for 2016. Next year will be different!

My next appointment with her was September 1st.  In that 5 month period (April to September) I have gained weight.  A lot of weight.  This, of course, is a common side effect of the prednisone – one of many – and this time around it seems to be the main one for me.  I have an appetite like a lumberjack.  I’m not hungry all the time, but when I get hungry it’s hungry-bear hungry, and it takes a lot to be sated.  Like, half a large pizza. Or an embarrassingly large portion of a whole roast chicken.  I tell myself I’m going to moderate my eating, but when I get hungry and the food is in front of me, well, I don’t have much restraint.  I don’t quite check out mentally, but the thought of moderation is dismissed entirely.  Leftovers are a thing of the past.  I’ve been bursting out of all my clothes, and have had to buy new things—in a size I’ve never worn in my life—so I have something to wear that isn’t embarrassingly tight, not to mention uncomfortable.  I’ve resigned myself to this weight gain for now, knowing the prednisone is necessary for my lungs, but there are moments of shame and self-consciousness at how I look.  Now any breathing problems I have are from inactivity, and trying to increase my exercise has been difficult: I’m assuming it’s because of the extra weight, but my ankle (old injury) has been giving me trouble for the past couple of months, so even a walk with the dogs has been off the docket.  I can’t tell you how frustrating this is, because even with all my whinging I am still grateful for my mostly good health. And on the positive side, we have reduced my prednisone by half in the past two weeks.  Yes!  With the appetite becoming more manageable it’s time for a weight loss diet!  Wee!

I took down a small maple over the weekend.  The sheep love the leaves and tender bark.

I’ve been slowly coming around to the idea of giving up the chickens.  I haven’t hired anyone to help with cleaning yet, mostly due to financial reasons (keeping up with medical bills, frankly).  So the dry, dusty summer, with the hens happily fluffing their feathers in numerous dusty bowls they create under the cedar trees, then the dogs walking through that, or lying in it, then coming to curl up in bed with me…well, I’ve got my head in the sand on the whole issue.  I let the hens free roam, but probably shouldn’t. In thinking about giving them up, I think about why I keep them; indeed, why I’ve been keeping them for most of my life (since 1982). I want to produce as much of my own food as possible, and have a little more control over this aspect of my life.  But I also know part of the reason I keep them is for the bucolic calm they exude, and coming home after a stressful day at work to watch my little farm at work is soothing to me. And although chicken TV has slowly been supplanted by sheep TV and honeybee TV, I still like having them, and the eggs they give me. With the sheep and the bees it’s a little easier to lie in the grass next to them (the chicken run is too grubby-gross to lie in or even next to).  They are enormously entertaining though, and, as with all my animals, knowing they are happy and enjoying a good chicken life is deeply satisfying, even fulfilling, to me.

After the visit with the pulmonary specialist earlier this month, and discussing the situation in more detail with her, I realize I have to do this.  I’m still very reluctant, and if I think about it too much I get a little teary.  I am simultaneously frustrated by the whole situation.  I have kept chickens for 35 years now, and had the parakeets for the past 15 years.  Why all of a sudden am I having problems?  There is no answer to this, of course, and it’s not unheard of or even uncommon, as a situation.  I guess what goes hand-in-hand with this is frustration is the worry: what if I get rid of the chickens and still have problems? What then? I don’t want this to be a slow elimination of everything I love most in life. I can’t get any traction with my vaccine theory, but I do think this is a factor in the initiation of this whole issue.  While I’m not “anti-vax” I am anti over-vaccination, and the bundling of vaccines.  A tetanus shot I received in early November 2014 came bundled with two unnecessary (to me at the time) vaccines: pertussis and diphtheria.  Within 3 weeks the symptoms of HP began – probably sooner, I just didn’t realize it – and by the end of November I was one very sick puppy.

The leaves are turning color and beginning to fall.  It seems too soon. I’m not ready.

I still think this is a “perfect storm” situation. And I know it’s done, and there’s no going back (“that ship has sailed, Mo”), but part of me wants to know.  Because maybe, eventually, and maybe it will take moving off this farm to a new location, I will be able to not worry about this anymore.  I believe the combination of the moldy hay I was running into at the time (purchased a ton of hay that year – the guy who delivered it said it came out of Oregon; it was some of the dirtiest/dustiest hay I’ve ever encountered) and the hit to my immune system from these unnecessary vaccines (the tetanus wasn’t really needed either – for the situation nor was I due, but with the animals/farm I know it’s a good one to keep up to date so I consented when I should have refused), added to a little normal life stress and a strenuous (and thoroughly enjoyed) day hike 8 days later, well, it all added up to a baseball bat to my immune system that I’m still recovering from.  I will never, ever (ever!) again allow myself to be vaccinated with three immunizations in one injection.  I will continue to refuse the annual flu vaccine (never had it, never will) even though my pulmonologist recommended it at my recent visit.  No, that’s not one I’ll do, I told her, emphasizing “I am NEVER sick.”  She looked at me with just enough of a pause that I burst out laughing.  She laughed a bit too.  And said she would nevertheless continue to recommend it to me, given my diagnosis.  But really, I don’t get colds – my last cold was in 2012 – and aside from this issue, I’m healthy and strong.  And once I get this thing figured out, I intend to sty that way.Gratuitous cuteness: Eloise, a.k.a. El, ‘weesa, or Pudge.  The only one of the three cats that will regularly brave sleeping in bed with me and the three dogs.  Heart her to bits.

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Woman cannot live on chicken and watermelon alone {or can she?}

Breakfast, lunch, and dinner. I’m not even kidding.

I’ve been calling it my roast chicken fetish, and I’ve roasted and eaten a LOT of birds in the past six weeks. For a while there, over the winter, I wasn’t eating much of anything because nothing sounded good.  Lack of appetite was just one of the grab bag of auxiliary symptoms I had, the primary one being not being able to breathe.  The weight loss was okay; I’ve worked harder to lose less, but sometimes I’d get hungry and would go to the grocery only to come home with things (comfort food) that didn’t taste nearly as good as they sounded. Root beer floats worked for a bit, but after a while I was down to cereal and milk, and even then didn’t finish the bowl (unheard of for me). If one of my animals went off their food to the same degree I’d be in a minor panic but for myself it was just “huh.”

Hanging out on a sunny spring day with my best guy.

About a week before my bronchoscopy I was at the grocery and got some roast chicken at the deli counter. It was actually pretty good and satisfying. The day of my bronchoscopy I had some lemonade and watermelon at Whole Foods.  That was good too. The day after my bronchoscopy I was in pretty rough shape, with deep, um, productive coughing, with said production laced with fresh blood (normal after the biopsy procedure, but still disconcerting). I sounded like a 3-pack-a-day smoker, and felt like I’d been pummeled, weak and tired. There was nothing to eat in the house – I’d stopped buying food because most of it would go bad – and I was hungry. Lemonade and watermelon sounded good. So did protein and fat. I got dressed and made myself presentable (barely), and went to the nearby grocery for a rotisserie chicken. And some watermelon. And some lemonade.

Yum.

That was six weeks ago and I’ve eaten a LOT of chicken in the meantime. Instead of buying the hot, rotisserie birds at the grocery, I started roasting my own. I fill the cavity with chopped garlic cloves and a couple teaspoons of Celtic sea salt, rub the skin with butter or olive oil, sprinkle another couple teaspoons of salt, plus some thyme and paprika, and pop it into a hot oven (400 degrees) for an hour or so.  When it comes out I’m salivating and barely able to wait for it to cool. I’ve found that wings are my favorite part. They have just the right combo of skin/fat/meat. Because the skin and the fat? Well, the embarrassing truth of it is that’s the part I think I crave the most. I’ve learned that the skin is best when hot and crispy from the oven, so I eat most of it then. It’s kind of gross when I think about it too much. Prior to this, I don’t think I’d purchased chicken in a year or more, other than a breast or two (bone-in) to make soup stock. But now? I’ve eaten a good sized flock, with no end in sight. We’re getting the first watermelons up out of Mexico now, so they’re a little easier to find (I was buying the plastic packs of cut up watermelon and trying to rationalize the price by the fact that I wasn’t eating much else). And copious numbers of Cuties have been eaten (and I’m not a citrus person in general). I’m sad that it’s the end of Cutie season. Gallons of lemonade have been guzzled; I buy Santa Cruz organic lemon juice, add a little water and a squirt or two of stevia and bam!  {this sounded so good now I just made a glass of it}

Today’s prescription: a day of PTO/work from home, where this was the view from the office. Hashtag healing.

This all has been weird and wild and I figure just part of the healing process. I’m glad to be eating normally (well, not normally, but normal quantities) and while I hesitate to talk about my sarcoidosis from a woowoo standpoint – I don’t want to give it more power or “become” my diagnosis—I also know I have to acknowledge it and not tra-la-la it away. I’m all about magical thinking, but denial does no one any good. I know this whole sequence of events and diagnosis (and the more I read, the more I realize it didn’t just appear out of the blue; it required the exact sequence of events to occur) has to be addressed. This is something I have to look in the eye and understand before I can bid adieu. Scram. Get lost. You’re not welcome here. I’m feeling better physically than I was a mere two months ago (but not as good as I was feeling one month ago, dammit) and being able to walk and breathe at the same time has been an eye opener to how ill I was for a while there. Somehow as you go through it you just cope and don’t really examine it too much.

For now I’m still under the influence of prednisone, a steroid of course, that, while it’s helped me to achieve that walking and breathing thing that’s not to be taken lightly, kind of messes with me otherwise, and I’m not liking it much. Scatterbrained, irritable, and a general feeling of discontent. Other things like appetite changes and sleeping changes are less noticeable. I get really hungry when I get hungry, and I feel like I’m not sleeping as well – this one is hard to describe – but mostly doable. The feeling of overall frustration or dissatisfaction, tinged with a dollop of hopelessness is making for a sour stew, though, and I’m having a hard time getting beyond it. I can distract myself out of it, a good thing I guess, but the concentration needed to turn it around is in short supply. Concentration on anything is absent, it seems. A TV program, a book, a task, it’s hard to stay with anything for very long. I find this supremely frustrating, because I need to work on getting rid of the sarcoidosis once and for all, and not just rely on the palliative effects if the prednisone. So far the benefits have outweighed the side effects, though I don’t anticipate this will be for much longer. I need to heal, and find my bootstraps to do so.

The clean up crew after some heavy duty pruning with my pole pruner.

I also know part of all of this discontent is the annual spring/summer thing I go through, where I see all the things that need to be done, or that I want to do, and wonder when I’m ever going to make the leap to what I really want to be doing. Right now giving my property a haircut is first and foremost. In the five years I’ve been here, the trees have continued to grow, and grow well. They would happily take over the property if left to their own devices. Take it back, I guess, since it’s obvious they once ruled supreme. Someone carved out some space for sky years ago, and left enough trees in place that the sky is once again receding under the canopy. It’s almost claustrophobic at this time of year, when the jungle-growth is rampant. I’ve been letting the sheep out regularly and they’ve managed to gobble up almost all of the normal undergrowth like a herd of wooly locusts. The grass around the house looks like a putting green and still the pasture languishes. I purchased a pole pruner – cordless, because I don’t do gas engines – which is basically a baby chainsaw on a stick. After taking a chainsaw introduction class a couple of years ago I realized very quickly I wouldn’t be buying a chainsaw (too dangerous for me). This is a way to have the tool but safer to use (it would be really hard to chop your hand or leg off by accident) and I’ve been having fun trimming and pruning. The only problem now being I really, really need a chipper.

Gratuitous cuteness: A cluster of baby orb weaver spiders (garden spiders), newly hatched. So adorable!