Mo Bloggin'

A little o' this, a little o' that

Archive for the month “March, 2015”

And the winner is… {part 3 of 2}

Taking flightThis horse race call has been going through my head for the past week.  I hear Chic Anderson calling it.  “And they’re off! Asthma breaks with an early lead, with Flonase in the saddle. Then it’s Hypersensitivity Pneumoitis, with Farmer’s Lung aboard. Two lengths behind is Interstitial Pneumonia and trailing way behind are the longshots in the field, Sjogren’s Syndrome and Lupus. As they round the first turn Asthma has fallen to the back of the pack and pulled up. He is not a contender. In the backstretch now, Hyerpsensitivity Pneumonitis is pulling ahead; Farmer’s Lung letting him have his head.  And from out of nowhere here comes Autoimmune Disease with Sarcoidosis on board! He’s running like a freight train! As they come around the final turn, it’s Autoimmune and Sarcoidosis nosing ahead! Farmer’s Lung is giving Sarcoidosis a run for his money! Down the stretch they come!”

It doesn’t look like it will be a photo finish, but I’ll find out in two days who wins the race, according to the medical community, when I get see my pulmonologist to get the results from my bronchoscopy last week.

For weeks, now months, I’ve been dealing with this “lung thing.” And aside from the debilitating effects on my daily routine, and outright crappy days with pleurisy, fever, zero appetite, and skull-cracking headaches, it’s been mostly invisible to others. I’m good with that. And while I pride myself with not making this my story from the get-go (public blog posting aside – ha! – my co-workers and others mostly were unaware until after my bronchoscopy last week, where I had to take a couple days off and came back to work with a deep, hacking cough from the biopsy and lavage procedures), I also sought medical help within 3 weeks of my first symptoms and didn’t wait around for it to get better on its own. I have an overall aversion to doctors and the need for medical care, but I knew there was something more serious going on and waiting was not prudent. A lot of farmer’s lung sufferers believe it’s just a bad cold they’ll get over, and delay treatment (which can then cause permanent scarring to the lungs), but when you can’t catch your breath it gets acute quickly, so I didn’t screw around.

My good eater girl: Daisy's getting so positively chubby that I feel like I should get a curly tail for her.

My good eater girl: Daisy’s getting so positively chubby that I feel like I should get a curly tail for her.

As someone who lives with animals, I totally get and agree with the typical animal response to illness or pain: don’t let anyone know and don’t call attention to yourself (I know, the blogging publicly aside is ironic here) you’ll be targeted/more vulnerable. Of course with the prey animals (birds, sheep) this mindset is more acute, but even my carnivores are stoic in the face of these weaknesses. It’s not very helpful to me as their caretaker to not have an obvious sign to go with, and can make for some “back from the brink” saves when they don’t let you know until they’re so ill they’re no longer able to hide it. So it takes observance, and a daily familiarity with their habits and behaviors, to know if something’s not quite right. A little testiness with others, or a quieter than usual demeanor, or the holy grail for the dogs: off their feed (red alert!) and the sheep: separating themselves from the herd (don’t panic yet, but hovering rightthere).

Lorna and her babies; these two lambs were probably the only reason she pulled through after a very difficult assisted birth.

Lorna and her babies; these two lambs were probably the only reason she pulled through after a very difficult assisted birth.

For me, I’ve found I’ve had all of these symptoms: less patience, less social and more isolation from others, off my feed (sure I have reserves, but for a Finn–we’re good eaters–to go off their feed is major stuff!). Less patience with the prima donna project managers at the office; the ones who think you’re sitting at your desk drying your nails, just waiting for them to unload their project with the impossible deadline on your desk. No, actually, I have six other project deliverables I’m working on, thanks though. This is always great when it’s followed by some version of adult business-civil temper tantrum. Drop everything and make my Most Important Project your priority. Yay. Normally I can shrug these off, and even laugh at them. Lately I’ve found myself snapping at them and their ridiculous expectations. Oops.

Yeah, you maybe should back off.

Yeah, you maybe should back off.

But it’s winding down to the diagnosis now; and the autoimmune factor is coming to the forefront, which is okay. Sarcoidosis is something I can work with, and have good hope that with some mitigation I’ll be as good as new by the end of the summer. I also believe, though I doubt I could get anyone in the medical community to agree, that this wasn’t just a long-time-coming diagnosis, but a progression of several of the horses in this race, including the starting gun: the tetanus-diphtheria-pertussis vaccine I got two weeks before my symptoms started. I’m still kicking myself for agreeing to that (my cat had accidentally (not aggression-related) scratched my ear open to the cartilage). My last booster was less than 10 years ago, but the doctor felt this was a risk (and was my cat vaccinated? – what do feline vaccines have to do with a scratch?).

And because I do believe that Farmer's Lung is still a concern, I purchased this attractive accessory for feeding the sheep and chickens.  It's hugely helpful and protects my lungs from dust and mold. Yaasss.

And because I do believe that Farmer’s Lung is still a concern, I purchased this attractive accessory for feeding the sheep and chickens. It’s hugely helpful and protects my lungs from dust and mold. Yaasss.

With this depression of my immune system, a the constant puff of fine hay dust and mold spores while feeding the sheep had just the opening they needed, and Farmer’s Lung strolled in the door and settled in for a stay. Then, as I gasped through January and February, feeding and caring for the beasts as I struggled to get a breath, my body working hard to keep up with the demands of my daily chores, the autoimmune factor opened up (I already have one autoimmune disease – Hashimoto’s thyroiditis – and they say once you have one…) and Sarcoidosis came in the door I left open in my negligence. I know this is probably irrational hooey and makes no sense scientifically to anyone with a medical degree, but a weakened immune system is huge. It’s like putting out the welcome mat for all kinds of detritus. Being basically healthy and from good sturdy stock, my only fault being not getting enough sleep (and the incredible restorative powers therein), I’ve learned a valuable lesson to take me through the next half.

Love this dog to bits!

Love this dog to bits!

Farmer’s Lung and the power of good health {part 2}

Let me just start off by saying I am so sick of being sick. It’s miserable, and as debilitating emotionally as it is physically.

In one of the many instances of

In one of the many instances of “the show must go on” category on the farm, today was shearing day, with Eifion Morgan, the man with the iron back, who comes all the way from Wales every year for shearing season.

And with that, I guess it’s obvious I’m not getting better.  I’ve had good days here and there—even two in a row last week (and the hope glows white hot at those times), but overall, I’d say I’m the same, maybe even a bit worse. And not sure what to do next.

Because here’s what I’ve found: The medical system just wants to swallow you whole and poop you out as a dried, dead turd. The machine of organized medicine, and all its players, seems to have no interest in you as a human being and is far too eager to push you into the “invalid” category.  And all that power you don’t even know that you hold when you’re healthy and well…poof! You are now just a patient (a word I’m not finding fits very well in either of its two meanings).  I’m sure my pulmonologist is brilliant and accomplished, but all I am to her and her staff is a pair of lungs, I think. There seems to be no sense of urgency and, with no pat answers (sorry!), no interest in really looking into anything beyond recommending more tests. While I realize the tests (all invasive at this point) do help to rule things out, I also think that to a large degree we’re chasing snipes. And I also realize that she, and all doctors, are busy and have an incredibly demanding job, with everyone they see being another needy patient. While I’m looking for a medical partner to finding my way back to full health, I find I’m running into the shock-to-my-sensibilities of just being the next invalid they’re seeing.  Invalid has two meanings: “sickly”and “not valid.” It’s kind of scary how quickly you’re moved into the second meaning when they really want to send you home with a pill and call it good.

Nutmeg and her sister after their first shearing. The lambs (almost yearlings now) were all bleating for an hour or more afterwards, not recognizing their mamas or each other after shearing.

Nutmeg and her sister after their first shearing. The lambs (almost yearlings now) were all bleating for an hour or more afterwards, not recognizing their mamas or each other after shearing.

And here’s a bit of brilliance from my champion bestie, Laurie (the woman is a rock star, in too many ways to count):

“The problem is that one really needs to be one’s own advocate with medical professionals, and that’s hard to do when you’re not feeling well, and feeling on and off discouraged/depressed. Sometimes, in my jaded opinion, they count on that. I saw on PBS the other night a Frontline by the guy who wrote On Mortality [Atul Gawande – I’ve read and thoroughly enjoyed several of his books], and he talked about the fact that doctors have a hard time dealing with people they can’t help. Someone who doesn’t fit into the pigeonholes they have in their brains is just a pain in the ass, because they get all their self-identification and professional satisfaction from those they can help. Understandable, but something that makes being one of those they’re not able to diagnose and “fix” pretty damned hard.”

Ah. Exactly.

The CT scan showed a number of things; the “ground glass” visual being the most marked for this non-medical professional.  The radiologist’s report went over all the things seen, and what they could be an indication of – many $40 words there.  It was obvious that this person had none of my history (symptoms) so s/he ran down the road with all the scary ones.  Well, they’re all scary, honestly, but the one that fits best, physical symptom-wise, is the hypersensitivity pneumonitis (aka Farmer’s Lung), of which nothing more was said beyond the single mention here.

Diffuse interstitial ground-glass disease pattern throughout both lungs, from apex to base, with patchy geographic areas of sparing and scattered bleb (cyst)-like lesions.

Diffuse ground-glass interstitial disease pattern is nonspecific. Major differential considerations, excluding CHF and diffuse pneumonia/pneumonitis, are lymphocytic interstitial pneumonia, hypersensitivity pneumonitis, lymphangiomomyomatosis,and Langerhans histiocytosis.

Lymphangiomyomatosis is less likely, since instead of multiple small cystic lesions, there are areas of less extensively involved ground-glass interstitial disease.

Mildly enlarged hilar and mediastinal lymph nodes which favors lymphocytic interstitial pneumonia (LIP). Sjogren’s syndrome is a much less likely diagnosis, mentioned for sake of completeness.

The lungs are clear of confluent lobar consolidation. Negative for pleural effusion or pneumothorax. Heart size within normal limits. Negative for pericardial effusion. Negative for thoracic aortic aneurysm or dissection.”

It’s good to know that the heart looks normal, because these days, she’s the only muscle getting a workout.  With the slightest exertion I’m gasping for breath, my heart pounding like I’ve run a marathon.  The rest of my muscles remain starved for oxygen, so I have to stop frequently to give everything a chance to catch up.  And that’s on a good day when I feel okay.

Now my work begins: 14 beautiful fleeces to skirt and ready for selling and/or processing.

Now my work begins: 14 beautiful fleeces to skirt and ready for selling and/or processing.

From here, as mentioned in my previous post, the doctor wanted to do a bronchoscopy with a lavage to collect cells, and some snipping at the lung tissue and lymph nodes for biopsy.  I’m not keen on that snipping stuff, though it may come to it yet.  I suggested a conservative approach and we did allergy testing.  And I’m not allergic to anything but bentgrass (what is that?), and that only mildly, and even more mildly, cottonwood (never had any problems with cottonwood).  All the heavy hitters – molds, bird proteins, cat and dog dander, pollens – nuthin’  That’s good, of course (and no surprise to me), but no answer for this Farmer’s lung I’ve diagnosed (hypersensitivity pneumonitis).

I have a follow up appointment next week, where the staff will again tell me to use the Flonase (prescribed by my GP, way back in December – looking for one of those pat answers) that doesn’t work, and to avoid cottonwoods (the farm is surrounded by no less than 50), and ask me the same questions they’ve asked me in the past. I guess no one’s writing anything down, because every time I come in, it’s like we have to start from scratch.

After suiting up and going into battle with the veterinary industry for my dogs (Cutter–over and over they tried to kill him, Farley, Hannah (tried to kill her too),  and Wil (well, actually they did kill him, sniff), most especially; and all of them with the constant pushing of vaccines, heartworm “medication,” flea treatments, etc.), it’s time to do so for myself.  I’m keeping a diary of symptoms – my acute symptoms usually happen on the weekends (most often when I’m lying down – there’s something there…) though the recent days of mild, clear weather do seem to help. I’ve had the heating ducts cleaned to eliminate the crud blowing in the air in the house and now need to have someone come in and do the attic (vacuum out the old, gross blown-in insulation and all the rodent droppings it contains) and the crawlspace needs…something. The mold that’s integral to Farmer’s Lung disease is an exposure related issue, and I need to eliminate exposures, because “the stakes are high” is an understatement.

Gratuitous cuteness. After shearing I was wiped out so came inside and made some soup and toast. Daisy got to lick the can clean, and when we curled up on the sofa for a nap, she kept the can with her, like a drunk and his beer can. Heart her!

Gratuitous cuteness. After shearing I was wiped out so came inside and made some soup and toast. Daisy got to lick the can clean, and when we curled up on the sofa for a nap, she kept the can with her, like a drunk and his beer can. Heart her!

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