Sometimes you just gotta sing the blues

Lately I've been feeling a little overwhelmed and a little blue. My elderly mother is going through some upsets and I'm her primary caregiver. My cardiac and blood checks are coming up in a month. And I'm in a tizzy over that sleep test, and not ready for more bad health news that might reveal. I'm thinking of putting that off until after I've seen my GP in June.

At times like these, it's a drag to get out of bed, much less put on your perky face and go to work as Little Mary Sunshine.

In this vein, thought I'd share Barbara Ehrenreich's astringent essay, "Smile, You've Got Cancer," which outlines the relentless pressures on cancer patients to "think positively." The essay was written some years ago, and was folded into her book, "Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America" (2009).

In the book Ehrenreich, who went through breast cancer treatment, gives voice to those of us with serious illnesses who sometimes feel flummoxed or even depressed by the pervasive insistence in our culture to "stay positive."

Good news, mixed news on drug treatments and prices

The MPN Research Foundation recently released a video from Barbara Van Husen noting the increasing attention MPN treatment is getting from researchers. The foundation, she notes, has been trying to get scientific researchers to focus on the disease for the past 15 years, and breakthroughs in the past five years have advanced knowledge and led to new drug treatments.

That's the good news.

However, mixed news about the affordability of these new drug treatments came from a National Public Radio spot this morning, which examined how market forces may bring down drug prices in some cases, while putting other drugs beyond the reach of patients in other cases.

Time out for sick food

It's cold and flu season here in the upper Midwest, and a college classroom is full of germy students spewing viruses in dry, overheated spaces. Usually my flu shot, frequent hand washing, and policy of not touching door knobs directly works pretty well. But this year, I've ended up with some type of pharyngeal virus. My neck is stiff, my throat feels full of gravel, and my nose burns.

Some ET patients say that colds seem to last longer for them. Not sure if there's any hard science behind the claim, but seems reasonable that if the body is "distracted" by a chronic illness, it may take longer to fight off routine viruses.

So: I've got my sugarless cough drops, my Breathe-Rite strips, my neti pot, my Vicks, my Tylenol and Mucinex, and my vaporizer, all things that make me feel better. But the real comfort comes from my sure-fire sick foods: onion soup and chicken noodle soup.

My self-improvement kick, update #2: The bike to nowhere

Dr. Ruben Mesa, Mayo Clinic hematologist, talks about symptoms with MPNs in the above video, noting that fatigue is the major complaint. Mesa discusses lifestyle changes that might help (no smoking, reduce drinking, lots of water, take a nap--I've done all that except for the nap). But what really seems to help most, he says, is gradual, gentle exercise. 

I'm not an enthusiastic exerciser, but it sounded more appealing than Ritalin, which jags you up, but makes you nervous. 

Hence my new "bike to nowhere."

Getting on with life, one damn cat at a time

Edgar ... before rescue

Nobody wants to be a "professional sick person," but right after an ET diagnosis, or when ET worsens or morphs, it can take up a lot of space in your head. (I've also got that wonky heart thing, too.) That's especially true since MPNs are rare diseases and few people really understand what it's like to have one.

However, one of the reasons I started this blog was to be able to talk about having ET (and hopefully share with others in the same boat) ... and then get on with life despite its exciting new challenges.

Which is how we ended up with Edgar.

PAN offers assistance with drug costs

The Patient Alliance Network offers financial assistance to those who cannot afford MPN meds. Grants are $7,500 per year and cover only meds used to treat MPNs directly.

Recipients must be insured, live in the United States, and earn no more than 500 percent of the federal poverty level.

PAN is a nonprofit organization dedicated to helping patients with serious illnesses meet their medication needs. Here's more info about the network.

Hoping this info will help someone be well!

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What I'd like to see in 2016 for ET patients

Perhaps the miracles of modern medicine will one day be able to correct the genetic mutations that cause MPNs. Understanding these genes has come a long way since my dad was diagnosed with ET over a decade ago. And research is moving toward targeting or even correcting the effects of the genetic mutation. All this is good (though I continue to be skeptical of the costs of these treatments).

For now, my desires are pretty modest. Here's what I'd like to see for ET patients in 2016: