Mo Bloggin'

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Archive for the category “The health thing that really needs its own blog”

Letting go

img958I made scrambled eggs for breakfast this morning. A mundane, everyday occurrence. Except when it’s not. You see, I (finally) gave up all my chickens a couple of weeks ago, at the direction of my doctor. After dragging my feet on it for six months, I placed an ad on Craigslist and they were gone in less than 24 hours. It was a good time to do it, just as we head into the winter months. They weren’t laying much (I was getting 1 egg a day from 18 hens) and the winter months are hard on them – they don’t enjoy the 6 months of rain any more than I do. Caring for any livestock during the winter months is more work (thawing frozen waterers when it freezes, replenishing straw regularly to help combat the ever-present mud, etc.), so getting rid of them now was a little easier, in theory.

I got an incredible response to the “Free Chickens” ad–over a dozen people, with half of them in the first three hours after I posted, and more coming in until I pulled the ad about 10 hours later. I had no idea old hens would be such a hot item. I replied to the first person that responded and said he wanted them all. He was close, only one town away, and was able to come after church on Sunday.

I went out mid-morning to shoo the girls into the coop, where they would be easier to catch. I donned my respirator mask, tucked my hair under my cap, and got to work. I moved them to the old chicken tractor I bought when I first moved here and needed a place for the hens I’d moved in with. It went quickly and easier than I expected. Then the tears came. I stuffed them back – I didn’t want to be a mess when the guy got here. But I had to go inside for a while.

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Loaded up and waiting.  Trying not to cry.

The fellow got here and got out of his van with three young boys, stair-step in height from age 6-ish to age 12-ish, each armed with a fishing net. We didn’t need the nets, but it was cute that they were ready for chicken catching. We loaded the hens up–there were 15 of them going—into the assortment of boxes the fellow brought and before I knew it, it was done.  I sent them off with 14 free hens,* plus my 25# feeder, the rest of a bag of feed I had, and three waterers. And it was over. After 34 years—most of my life—with anywhere from 6 to 26 chickens in my backyard, I was now chicken-less.

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So quiet and sad.

So now it’s just the adjustment to life without chickens. I know it sounds ridiculous in many ways, but it’s a huge change for me. They weren’t pets per se, but I loved having them in my life. Their simple pleasures in a good sunbath, a juicy worm, scratching in the garden, and dusting in the dry duff under the cedar trees were my pleasures, too. They are entertaining to watch, and their busy little lives were always an enjoyable way to wind down after a hectic day at work and a lousy commute. Plus, eggs. Delicious, free-range eggs on organic feed. These purchased eggs have a funny taste in comparison, and even though they’re pastured, organic eggs (at $6 a dozen) they’re not as rich or egg-licious as mine were. 20161120_123149I wake up in the morning and look out the bathroom window to the empty coop and run, so silent in the morning gloom, when it should be filled with the waking flock, clucking and pecking and preening. I come home expecting to see them come running to the fence, eager to be let out (I kept them penned when I wasn’t home, to keep them safe from predators). While raking leaves I am struck by the silence of not being surrounded by a happy flock scratching around in the leaf litter and filling up on all the goodies they find. A favorite activity was to dismantle a pile of leaves I’d raked up; they were quick and industrious, and could take down a pile in short order (like, while I briefly went to get a bin for the leaves). I feed the sheep after work and think about checking on the hens for a half beat before I remember they’re no longer out there. The coop is deathly quiet now.  It’s even noticeable at night, when they’d normally be quiet anyway, roosting for the night; my coop full of contented hens is no longer there and it’s almost ghostly.

It’s ridiculous how many tears I’ve cried, not realizing until they were gone how they infiltrated my life so completely. I knew I would miss them, but I didn’t know that virtually everything I did outside would be permeated with their loss, even as it was filled with their presences before. I don’t know why I didn’t expect this; perhaps because I never imagined this scenario. Even now, looking out my office window as I type, the vacant run is still and the emptiness is wrenching. I used to look out at them as I worked here, a moment’s respite from my labors at the computer, reflecting or looking for a word, thought, or sentence in my mind as I watched them being all chickeny, happy in their little chicken lives, providing me with entertainment and solace, de-stressing me with their calming, bucolic presence. Plus, eggs.

I’ve tried to rationalize it every which way, knowing that I had to do this for my health, that it’s for the best, that it will save me money at the feed store, that it be easier to have fewer animals to care for (whatever), but nothing is breaking the desolate void of not having them. Except my heart.

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*I’d withheld three hens for a woman on a local FB group I belong to, who’d expressed interest in them; they went to their new home on Tuesday morning, plus one who’d escaped on Sunday.

Hypersensitivity pneumonitis – lung thing part 3

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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).

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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).

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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.

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!

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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.

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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.img1041Gratuitous 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.

No birdz allowed – lung stuff part deux

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Another glorious Pacific Northwest summer is winding to an end. They are always too short.

Continued from previous post:
So I left the specialist’s office that day in March with a couple prescriptions – one for oxygen at home, and one for steroids (prednisone) – both of which I’d used a year earlier, and both of which I didn’t want to do, although they help immensely. I knew the oxygen use would be short-lived, as once the prednisone kicked in and inflammation was neutralized, I no longer needed it. While its benefit is huge in that 10 – 14 day time frame, I just didn’t want to deal with it (both the admittance that I needed it nor the growling, hissing activity of the oxygen concentrator, not to mention the medical rental of the machine, although this experience/company was MUCH better than last year’s). And, after all was said and done, I spent over $630 on the rental (insurance only covers so much)  for the 10 days of use, because the doctor wouldn’t okay its return until she saw me again…in May. I would have done better to purchase one of my own at that cost!

A few weeks after my visit we got the antigen tests back. And while most everything was in range (they test for a variety of typically encountered organisms) there were a couple of molds that were moderately out of range (high) and two others that I just didn’t expect: pigeon droppings, and pigeon feathers and proteins. Which, of course, means all avian. (I’d tested negative for bird allergies last year.) The doctor knew I had chickens (we’d discussed them with the sheep) and she flatly said I had to get rid of them. I was dismayed, not really understanding if they were outside why I had to get rid of them. I live on acreage. There are birds EVERYwhere. And geez, I’ve been keeping chickens pretty much my whole life (a continuous flock since 1981). But what she didn’t know, and I of course then shared with her, is that I also had a couple of parakeets in the house. And these two, I realized, I would definitely have to place. Dang.

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Of course these results, combined with the review/reassessment of my prior tests and procedures/pathology (done elsewhere) by the UW pathologists, confirmed the rediagnosis from sarcoidosis to hypersensitivity pneumonitis. The doctor was very clear that I had to get the birds out, and once they were out, a deep cleaning of the house (wall washing, floors, furniture, etc.) that I was NOT, under any circumstances (even with my fancy respirator mask) to do myself.  Okay, but… “Have some friends come over to do this for you.”  Um, no. I would hire someone before I asked my friends to do a deep clean on my house.

The first thing I did was take the parakeets, Hugh and Cate, to the vet. I was going to give them away, probably via a Craigslist ad, but wanted to be sure they were healthy before I did so.  Hugh was dealing with some kind of mite or lice infestation – not horrible, but his feathers had looked a little rough for the past 8 months or so (I’d treated with mite control, using the vet’s recommended protocol, to no discernable improvement). Cate looked fine, so maybe there was something else going on with Hugh?  Sure enough, lab work showed he had some elevated kidney values, moving towards gout (who knew?). And here is where my angels helped me out. As the vet relayed the information about Hugh’s bloodwork and recommended treatment (and expense – I’d already spent over $200 for their checkup and lab tests) – fluids once a day for a week, retest blood work and re-evaluate treatment – I was simultaneously trying to digest the information and figure out what to do. She knew of my health situation, as I’d explained it to her/the clinic when I brought Hugh and Cate in for the exam, and then she very kindly and graciously offered me a solution. If I wanted to, I could sign Hugh over to the clinic, releasing ownership and entrusting his care and eventual adoption placement to them. I hesitated, thinking of Hugh – while he wasn’t a bird I’d handled regularly I still felt affection for him and of course responsible for his well-being. I’d had him for 8 years and he was a cheerful, beautiful little guy. But I knew the treatment he needed was outside my ability at that point, and I didn’t want to place him with the hope that whoever adopted him would do the right thing with his care (nor was it fair to place a sick bird with anyone). What was best for him was to sign him over to a place where he could get the care he needed. I brought him in a week or so later. The vet, Dr. Carter, gave me a hug as I signed the papers and said goodbye. I mostly held it together until I got in the car to leave, and then had to dig around in my glove box for a tissue to wipe the tears away so I could see to drive home.

For Cate, now alone, an equally miraculous solution occurred. She and Hugh weren’t bonded, and in separating them she actually seemed happier. They never fought, but they never seemed to hit it off (I’d had her about 3 or 4 years). The weekend after I placed Hugh with the vet, I went to a local spring fair with a friend who also raises Shetland sheep. It was a great chance for her and I to catch up on the drive down, and go see the sheep and fleeces, and booths from sheep farmers and wool vendors, plus chat with other sheep people we both knew. She asked about my health update as we drove back home that day, and I gave her the whole long story of the new doctor and findings all the way to the need to place the parakeets. As I yakked away, she began texting a coworker whose son was an animal lover and had recently said he wanted a parakeet. I didn’t even notice she was texting until she told me about this possible home being available. The coworker texted back that they had already gotten a parakeet, but said they would think about taking Cate too.  From the description, it sounded like a wonderful home, and I sent photos of Cate along with a description of her personality. It turns out the boy, aged 10 or 12, had wanted an all yellow parakeet, and was thrilled to see Cate was exactly what he was looking for. “It’s kismet,” he told his mother, who contacted my friend to let her know they’d take Cate. The boy renamed her Mango, which I just love.

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The badly placed kiwi vine (here when I moved in) once again trying to take over the front porch. I’ve lopped off nearly as much as you see here. I need to transplant him. I call him Groot.

So my house was parakeet-less for the first time in 10 years or more, and it was eerily quiet. But I knew it was for the best and it seemed miraculous that both birds were placed almost effortlessly into situations that were perfect for them. I cleaned up the area they’d been in, vacuuming well and wiping down the wall and windowsill where I’d kept the cage, and of course moving the cage out to the garage (and hosing it down outside first). Next on the agenda was testing my environment for toxins in the form of molds and bacteria.

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The plum tree was laden with its ping pong ball plums this year, the branches groaning under the weight.  The dogs and the sheep have been enjoying them.

I contacted one of the companies on the list the clinic had sent me. The fellow there, Payam Fallah, was a wealth of information, and we discussed my antigen test results and the animals I have here. Like my doctor, he too was a dog lover, which felt good.  Both of them not only understood the dog connection, they both confirmed that dogs/cats rarely are an issue in these cases. Payam also has a tortoise (I’d shared that my menagerie includes a box turtle), and we had a good discussion about our mutual love of animals. Again, this was reassuring – I didn’t want my animals to be automatic targets for removal because of an overall dislike of animals by the professionals I was dealing with.  He sent me sterile swabs/kits for me to take samples in my house. He told me that taking swabs in my detached garage – where I store the sheep’s hay (and the mold inherent therein, which I believe to be one of the major factors in the original manifestation of this health issue) – is pointless, as there are so many molds in the environment/outdoors. Okay…

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My sheep maintenance in my fancy new “deck chair” (sheep restraining tool) wasn’t as easy as I’d hoped.  The Shetlands are squirmy, and Trixie, above, probably the worst of the lot.

So I took four samples: one in the bathroom, one in the bedroom, one in my office, and one in the main room of living room/kitchen/“dining” (my house is tiny; this last area, at roughly 500 square feet, encompasses half of it).  A week later he emailed me the results.  Which basically said my little house was fine.  The highest mold readings were in the bathroom (duh), but a) the mold count wasn’t astronomical and b) the molds were not the ones that showed up on my antigen tests. The bedroom, where I was most concerned (for the crawlspace underneath), had a big fat doughnut for results. Which was good. Despite the fact that I sleep in a pile with the dogs (and a brave feline or two) every night, and the crawlspace was an unknown quantity (can’t access), absolutely nothing showed on the swab I took from a wall sconce above my pillow. Thankyoujesus.

I still want to do a swab in the garage, and maybe I still will (have one left, and spreading out the cost is a good thing too – out of pocket, it’s $40 each swab to see if anything grows). But the house is fine.

Now to figure out the chickens…

Health update on the lung thing {zzzzzzz}

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The ovine greeting crew when I get home from work every day.  From left, Mungo, Minnie, and Trixie.  Mungo and Trixie are Minnie’s twins from 2014.

So it’s been a few months since my last health update. One reason, as you might have guessed, is that I’m doing better, for the most part. No need to kvetch when you’re feeling well.  The second reason is simply that it’s deadly boring to go on about your health issues, and (something I’ve mentioned here before) it feeds the “unwell” and gives it power. Your illness becomes your story, your story is who you are and how you identify yourself, and you get sicker. Then there’s the old “Attention Whore” aspect, as my delightful niece-in-law put it (she’s dealing with her own very serious health condition with grace and dignity, a great attitude and humor!). Enough already, you know? So I’ve blogged about topics that interest me more – the farm, the birds, my bees. But a few of you may have wondered, so I’ll try and be brief (a challenge for me, Verbosity Queen that I am) and update here.

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Daisy reluctantly helping me test out my new sheep “deck chair” after I put it together. It’s  equipment to help me with sheep maintenance like hoof trims, vaccines, and worming.

First and foremost, I am seeing a new doctor. I went to see this doc as a “second opinion” type of thing back in October 2015, when I was doing well. Then,  just off 6 months of prednisone therapy and a dry, sunny summer, I felt fine, even great. Even so, seeing this pulmonary specialist in interstitial lung disease and a sarcoidosis specialist at the University of Washington (at my own request/initiation) seemed prudent. My higher self looking out for me, perhaps. It was a bit of a hassle to get there, which is why I hadn’t gone before, but my interactions with the pulmonologist I’d been working with so far hadn’t been reassuring or inspired trust.

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The bees bearding on a hot summer night. Basically hanging out on the stoop where it’s cooler, just like you or I would. But without the cold beer.

The visit with the specialist went really well. I had a good rapport and she went over my records (illuminating me further on things that hadn’t been shared before). Since I was doing so well at the time, she suggested a recheck in six months (April 2016). Six weeks later, however, the symptoms returned. I wasn’t as bad as the year before, when all this first started (November 2014), but breathing easily was an issue again. So I went back to the original pulmonologist and had the worst appointment ever. I think if I had been hit by a bus on my way out of the clinic she’d have been happy to be rid of me for good. I wrote about it here, with a promise to update but I never did.

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The junco’s nest I was watching in June/July.  Only one egg (of four) hatched, but the chick was gone within a week, likely a meal for a shrew.  The pair tried again in a new nest location, again with four eggs, but none of them hatched, though the female was diligent.  It looked like they weren’t fertile.  The cats invaded the nest (after it had been abandoned) and broke a few of the eggs – there was zero development.

I struggled along, dosing myself regularly with ibuprofen (3 tablets every 22 hours or so seemed to keep the inflammation manageable) and mostly feeling okay. If I didn’t walk fast, and anything physical was done with lots of breaks to stop and catch my breath, I managed okay. The best way to describe this is I feel like I’ve just run a 400-meter dash when all I’ve done is walk across the driveway to the garage. It’s not like asthma or other bronchial constrictions, where I can’t get enough air in physically, it’s more that when I do huff and puff, the oxygen isn’t making it to my bloodstream. Then, in February, everything came to a grinding halt with a ramping up of tasks and responsibilities at work, and accompanying high stress. The ibuprofen dosing wasn’t keeping up, even when I upped the frequency to every 12 hours. I called the specialist’s office. They set me up with a late March appointment, which sounded fine. A week later I was feeling bad enough (and, frankly, a little worried at how badly I was doing) that I called and asked if they could get me in sooner. My appointment was set for early March.

I went in for a 1:00 appointment, thinking I’d be home by 3:00 or so, but it was after 6 p.m. before I got home that night. First the respiratory therapist come in for my walking test. He hooked me up to the oximeter and we began the six minutes of walking at the fastest speed I was comfortable with – I’d aced it back in October.  Within a few dozen steps he stopped me, thinking the oximeter wasn’t hooked up right and needed adjustment. I looked at the number showing and said blithely, “No, that’s right. That’s what it does.” (I monitor my blood oxygen and pulse rate at home.) It was reading low 80s at that point (which wasn’t as bad as it got while I was feeding the sheep or caring for the chickens). He seemed alarmed and said “You need to be on oxygen.” And stopped the test. “No,” I protested, thinking it was no big deal, “I can just walk slower, I don’t need oxygen.” He wasn’t having it and took me back to the exam room to wait for the doctor.

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The male dark-eyed junco singing from the red huckleberry stump last month.  None of the songbirds are singing now – nesting season is over – so my  much loved Swainson’s thrush serenades are over until next May.

A few minutes later she came in and sat down.  After the initial greetings she said “I was thinking about you recently.” (Moi? I was more than a little surprised.) “You weren’t originally scheduled to come in today, were you?”

Well, this was a “You had me at hello” moment for me.  I saw her one time, five months previous, and if she even remembered who I was it would have been enough. This, though, had me glowing with a “you see me” warmth. “No,” I replied, “my appointment wasn’t for another two weeks, but I haven’t been doing well so I called to move it up.”  And off we went. I told her how I’d been doing, my symptoms, how they’d gotten worse, what I thought was going on (job stress), what was (or had been) working, etc. Then she told me how it was.

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The fruit of a manroot vine (Marah oreganus) along the driveway, looking very Dr. Seuss-ian.  A Northwest native, the fruits are about the size of a plum, the “spines” soft and fleshy. It’s a relative to cucumbers and gourds.

First of all, the reason she’d been thinking of me is because she had another patient with symptoms very similar to mine, who was also a referral (i.e., also already diagnosed when she came in). Like mine, the other patient’s symptoms and tests didn’t add up and when they looked into it further they found that, no, this other patient didn’t have sarcoidosis but rather hypersensitivity pneumonitis (HP).  Hmm.

So she ordered up all my slides and pathology from my previous doctor/hospital and planned to have the UW pathologists review them. And she recommended more testing. We did a CT scan that day.  The results showed no change from the one done a year ago (meaning no worse, which is a good thing, considering how poorly I felt). And she also ran some antigen tests. An antigen is a substance that your body reacts against, such as molds, dusts, and chemicals. Last year I requested allergy testing – partly to buy time (the previous doc only seemed to really want to do the bronchoscopy) – which is a different thing (IgE vs. IgG).  Everything on those allergy tests last year came back normal, which wasn’t a surprise, but it ruled out things I was worried about (the dogs and cats). I don’t have allergies, and only very rarely react to something I’ve eaten or in my environment.  Antigen testing though is testing to see if I had things I was reacting to via antibodies (proteins that your body creates in response to antigens). This, if you’ll remember, was more what I was thinking was going on back in February 2015. Specifically with moldy hay and a condition called Farmer’s Lung. There are many antigen variances of HP – farmer’s lung, bird fancier’s lung, wine grower’s lung, woodworker’s lung, etc., and I asked the doc about testing in the home (I’ve been very concerned about potential molds in the crawlspace) and she supplied me with a list of companies that tested for home toxins. This felt like real progress, for the first time in a year!

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The flock is down to 10 and the freezer is full. The meat is excellent (from 4-year-old sheep).

And then she had me redo the walking test with oxygen. And I was a-mazed at the difference.  For weeks I hadn’t walked faster than a snail’s pace without running out of breath.  With the oxygen (turned up to twice the normal flow rate) I was almost back to a normal pace.  Wow!  It felt incredible! I guess they’re right {joking} But it unfortunately meant she wanted me to have oxygen at the house again. She was unimpressed with my fancy respiratory mask and the care I take (covering my hair, etc.) when feeding the sheep and insisted I get someone to feed them for me, and to keep my contact minimal. I understand her concern and insistence, but felt that until there was conclusive proof they were an issue, I would continue to take precautions and protect my breathing around the hay feeding.

The bottom line is the doctor feels that I probably don’t have sarcoidosis – even the radiologist’s report of my CT scan last year had zero mention of this as a possible diagnosis. I remember my last pulmonologist discussing the diagnosis after the bronchoscopy procedure (an abbreviated visit, where the doctor was talking fast and was very short with me—because I was 10 minutes late, I guess—and indicating the results weren’t entirely conclusive as sarcoidosis but that’s what they were going with for my diagnosis and treatment. Wait, what? Ookay. (?!) But now, this specialist pulmonologist was taking the time to go the extra mile and do some actual research into my case, and ME.  Again, this felt incredible. (Before this, with the other doctor, I felt like I was the only one doing any research into my case.)  And with this research, plus the further testing , she felt the much more likely diagnosis was HP for me. This was a good thing. I think?

~ To be continued~

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Gratuitous cuteness: Pal, in one of his rare moment of stillness (to be fair, he’s a doll in the house, calm and easy – it’s just outside that he runs and runs).  Note the gash under his eye, where he ran into a lone fencepost during a case of the zoomies.  He’s normally super agile, but it was dusk, and the fencepost is a leftover from fencing my vegetable garden  – ow! Heart this little guy!

Four times a charm?

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Moss season.

That’s how many times I’ve tried to compose this post into something coherent and cohesive, either starting anew or adding to the draft in progress. While the likelihood is high that I may fail again, I’m determined to try. It often seems to be a war between what might be my true self—the whiny, bitchy, judgmental, negative, stress puppy that I try to keep in check—and the person I see myself as, the person I strive to be: someone who lets things roll off her back, who doesn’t judge others, who has a positive attitude that infuses all areas of her life. Sigh. Lately it’s been mostly that old, small-self me, and mostly due to stress that I still haven’t gotten a handle on, that I MUST get under control if I’m ever going to get any better. Instead, it’s ramped up to levels I haven’t encountered for several years, mainly due to the day job and trying to do the work of three people at the office while people are out. This has been hugely frustrating to me, and I feel like no matter what I do, there’s no relief. I try to cover work for people who are absent, in addition to my own work, and all of it suffers. My own work is done with less care, the coverage of others’ tasks is haphazard (there was little to no training on most of the tasks I was expected to take on – most of which were unknown to me). If I speak up about the state of things I sound like I’m just making excuses (even to my own ear) yet the impossibility of the situation remains. All this at a time when I’m trying to heal and make time for relaxing and meditating. Instead it’s been triage-mode, and my health has suffered. I am so frustrated with myself for allowing this to happen, for getting so stressed about it that it’s run my internal dialogue all weekend long, with work brought home (to try and catch up on last week and hopefully get ahead for the coming week) hanging over my head all weekend along with my regular chores and work I’d like to do for myself.

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I kind of know just how this hammer must feel, if hammers feel.  I found it out in the woods when I was picking up tree limbs and other winter detritus. It’s been sitting there a little while, I’d say. Nature won this round.

Spending 60 minutes to create a blog post seems indulgent right now, but rather than wait until I have time, or worse, wait until I have time to pretend all is well and that I’m making progress in my journey to good health, I figured I’d let the reality of life write the post this week, however dreary. It’s often part of the reason the gaps between posts go so long, frankly, as I don’t like writing about or dwelling on the negative (even though this comes through regularly), yet getting to a good frame of mind to write positively isn’t always achievable in the free time I have. A friend recently reminded me, as I lamented (before the recent work burdens) about wishing I could have a month off to get caught up with life and to write, that writers just write. They put their writing first, carving out the time above all else—before chores, before work, before leisure – and how it’s not a waiting for the right time to come along. I do get that. I find I need a little more breathing room (ha! A pun!) around it, or else what comes out is a lot of stuff like this. I’ve done morning pages (writing first thing, every day, no matter what), and while it’s been over a decade since I engaged this practice, I remember having to force myself to stop, because I found that the stuff that came out was a lot of internal “yuck” and it became a horrible way to start the day. Perhaps if I stuck with it longer I’d have made a breakthrough and found my way to a higher place. As it was, I was taking a perfectly good morning and ruining it, coloring my entire day with the stuff that got dredged up—feeling bad about myself, about who I was/am, how I move in the world compared to those I admire, my talents being not as good, etc. Still, making time for things that are important to me—my writing among them—is also a key to improving my life wholesale.

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Stinging nettles love it here; their early spring growth is a great spring tonic vegetable – loaded with vitamins and wild good-for-you-ness…once you neutralize the stinging part (by cooking or drying).

So to circle back to the revelations I was making a month ago, with regard to my health and healing, I realized my ability to handle stress is sub par (understatement) – something I’ve known but thought I had handled better than I do. And I am trying to change how I view the world by changing how my brain works. I have to say when you’re sick it’s really, really, really hard to turn the ship around. To replace the fear and worry with positive affirmations is not only difficult but when you are able to do it, it frequently feels false and trite. Sure, my lungs are “strong and healthy, and breathing is easier every day” as I try and catch my breath after walking a half block with a 4% grade incline, stopping to gasp and let my heartbeat calm down. Trying to jog-trot a few dozen yards to make a crosswalk light leaves me huffing and puffing like I just ran a 6-minute mile. And I’ve stopped taking the stairs at work. The one flight up between floors–even taken very slowly—has me puffing enough that our receptionist says “geez, did you run up the stairs?” Perhaps this is dwelling on the negative, but these are also the current realities of my life, and trying to revise the thought process from woe-is-me to a healthy, healing, positive frame of mind, has been and is my challenge.

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While my days of week-long backpacking trips (hauling a pack nearly 1/3 my weight) are behind me, I do plan that I’ll once again be able to go on day hikes with the dogs.

Next post (hopefully sooner than one month out) I’ll talk about some of the very cool books and tools I’ve found that are helping me to slowly turn things around. I’ve had to slow the pace a bit, unfortunately, as the exciting incoming information became overwhelming and I ended up having to disengage from all of it. I know part of this is due to my health in general—the ability to concentrate seems to be another thing that’s in short supply with this condition. A recent long day at work meant that once I got home, after chores and feeding and caring for my very patient animals, that I literally didn’t sit down until 10 p.m. Hitting the books after a day like that isn’t going to happen, and a meditation session will just put me to sleep. So the process has been slow, especially for the past few weeks, when it really needs to be in high gear, or better yet, already set in place. Baby steps.

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Gratuitous cuteness: Daisy snuggled up on a winter’s evening, waiting for momdog (me).

They say stress will kill you

I started this post over three months ago, and have been tinkering with it ever since, trying to find a single theme or focus and a way to wrap it up tidily. Instead it just keeps getting bigger and bigger. So I think it’s just going to be another multi-part post. Because I’ve got a blog and I’ve got something to say. Let’s get started.

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The promise of spring on a chilly midwinter day. Don’t worry, I’m on my way, she whispers. 

They say stress will kill you, given enough time and enough stress. I’ve always considered myself to be a low anxiety, low key type of person, not easily ruffled, and nowhere near the stereotypical Type A personality one associates with chronic stress. And all of that is still mostly true, but I’m finding the stress is there, and yeah, it’s not the healthiest condition. I’ve been feeling lately like I’m turning into my mother, who was also a low key person, but as she aged, became someone whose anxiety could derail her. It was upsetting to hear during a phone conversation (she lived across the country from me), and not be able to help, or to see (during a visit) and become frustrated at her immediate redlining of anxiety and/or anger over seemingly minor things. Now I wonder if that these kinds of things aren’t totally under one’s control, and the aging process is a right bitch you have to get a handle on and ride to the end. But wait…

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Several days of frost build up during a recent cold snap.

So I’ve been having a few epiphanies about stress and its role in my life. Until the past year, hell, until the past few months, I would have told you that I have little to no stress, am not the stressy sort, and other than a frustration or two during my day (say, a particularly crappy commute), I have no lasting stressors in my life and am not an anxious or tension-filled person. I am learning, via several avenues recently—epiphanies and research both—that I’ve been wrong for a long time. Maybe my whole life. Yes, I’m good at stuffing things, and keeping a calm demeanor. I am okay at letting some things roll off my back (or like to think I am). But still waters run deep, as they say. For many years (most of my life?) I’ve felt this could be my motto. I tend to run calm, stuffing stuffing stuffing, with the occasional acid-tongued blurt or outburst (which I regret nearly every time), until suddenly I don’t. Not healthy on any level.

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I spy with my little eye.  Best destressor ever.  I adore this dog . {just throw it}

The constant undercurrent of anxiety has been detrimental to my health, as I found out last year. And a December visit to the pulmonologist and my breathing tests are all running at the same less than stellar numbers as they were a year ago, some even a little worse. The test is stressful for me, so I wonder if that alone affects how well I do, but the visits to the doctor are stressful as well. After the last visit, where we discussed my test results and the recommendations for treatment, I realized that this doctor has zero interest in my well being. It was obvious before—I’ve joked that she only sees me as a pair of lungs, and not even very interesting lungs—but for some reason you keep on expecting something. Or hoping for something. As she told me about the gnarly drugs used to treat sarcoidosis, and my options therein, I broke down a little. I bowed my head to collect myself, and when I rose it to speak, voice quavering a bit, the doctor’s face was a blank wall. There wasn’t an ounce of compassion or caring there, just a clinical detachment and, as a result of this blank wall, the gift of my Aha moment – if your doctor doesn’t care about you, then stop going to see him or her. (Note: I didn’t expect anything special over my being upset, just an acknowledgement that it was affecting me.)

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Zombie sheep, waiting for me to feed them one evening after work. Will my eyes glow like this if I go on the sarcoidosis drug?

I took the 15 page printout she gave me about the medications she discussed home with me to read over. I’ve tried to read it all objectively, since I am not really interested in going on a chemotherapy drug (though at much lower doses than for cancer patients) that requires regular blood testing to make sure my liver isn’t being damaged by it, nor having every vaccine known given or boosted (because my immune system will be shut down by the drug). And because I’m not feeling at all confident in this doctor’s interest in my health (and will not continue with her regardless) and can’t imagine being on such a hardcore treatment under her supervision, I’ve kind of gone off the rails. Just so it’s clear, I believe the doctor’s knowledge, experience, and treatment protocol are solid, but I just can’t continue with a doctor who has repeatedly shown me she doesn’t care about me. Sorry. I know I sound like a big baby, but there are statistics to back up my feelings (more on this later). There really isn’t any gentle treatment for sarcoidosis, and most treatments involve steroids or chemotherapy drugs or anti-malarial drugs. And running in the background is the “ it often goes away by itself” noted on nearly every website search I’ve done (and indeed, was told this by my doctor early in the diagnosis process). What to do, what to do.

And lo, the path appeared. I happened upon a book whose title has been on a stickynote sitting on my nightstand for months (close to a year?). Something else I was reading at some point brought this title to my attention and it sounded interesting so I wrote it down. Finally, while doing some cleaning I saw it again, sticking out from under my alarm clock, and sat down on the bed and ordered up an ebook version from the library. Within the first 10 pages I realized I found something special, and maybe even the key to getting on track with real healing, not just treating to abate symptoms.

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Pretty much.

And this book led to another book. And then another couple of books came across my radar, and another, and suddenly I’m awash in research, none of it about sarcoidosis specifically, but about healing in general and healing myself in particular. And when I say healing myself, I’m not just talking about the sarc. I’m going down the rabbit hole to figure this stuff out once and for all. Because I can’t spend the rest of my life in a slow decline, feeling bad about myself, becoming smaller instead of better, and worst of all, never becoming who I’m meant to become. Never doing what I’m meant to do as I stay “safe” and afraid. This shit is real, and I’m diving in. Hang on! Because: IMG_20160103_183753

 

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