Saturday, July 29, 2017

NEW SERIES: GAME CHANGERS. POST #1



I've been slacking in the medical tips department, but I'm resolved to do better! My plan is to be more systematic, writing about one medication per post.

We all remember Miracle Max,
from The Princess Bride.
He was right, miracles take time.


This series is about what works for me. (This is basically a re-branding of posts with that tag. You can find these very practical posts in the word cloud to the left.) I wish I could say I've found the low-cost, one-single-pill, covered-by-insurance cure for Chronic Lyme. That is not so. Some of these things will be covered by insurance, others not. In addition, what works for me is a multi-step process throughout the day.


And yet, I've been reminded recently that my life is now unbelievably good compared to what it used to be. I've come to this point after years of trial and error, and with input from several good doctors. 


I wish, for the sake of everyone reading this, that things were simpler, medication-wise. But the human body is complex, illness is complex, and medicine is therefore complex. Stay strong, Lymies!

(And remember, medical researchers are working hard. Find more on that front at lymedisease.org.)







So here's the subject of this post:







I take this every morning, right before I get out of bed, and again at approx 12:30 /1 pm. This is to support my adrenal glands, which do not function well due to damage from Lyme. (For the record, I’m not advertising for Thorne Adrenal Cortex. It happens to be the brand I take but another brand would probably work just as well.)

Low adrenal function was the first clear medical diagnosis I got on the road to recovery. This was in the year 2001, a couple of years after I’d been knocked down by something mysterious, an illness that showed up on exactly zero medical tests. It would still be many years before my Lyme diagnosis in 2007. So the adrenal diagnosis was all I had for the interim. It was the first scrap of evidence that it was not all in my head, as so many doctors had been telling me. It was a small clue, but an important one.

The adrenal glands are glands located on top of the kidneys. They are, as a doctor once told me, the spark plugs of your body. They produce cortisone and cortisol, which are crucial biochemicals in the endocrine system.

Over the years, I've tried many things to support my adrenal glands, hydrocortisone, the pharmaceutical usually prescribed for adrenal insufficiency. (Prescribed an endocrinologist, in my case.)

The prescription hydrocortisone did very little for me. Likewise, other natural supplements touted to help the adrenals did not help me. Again, this is my individual, personal experience. I have no preference or belief about natural vs. allopathic medicine. I only care about what works. This type of naturopathic adrenal cortex was a game changer. It has made all the difference in my life.

It was the difference between being able to get up and walk, or not. When I started on adrenal cortex, it was many years after the diagnosis of low adrenal function. By then I was seeing a doctor who had figured out my blood was too thick and put me on blood thinners, which allowed me to be a little more active, enough to be able to walk about three blocks. That seemed like a giant break-through, but it was still impossible to build up my strength beyond that. At that time I was on hydrocortisone.

Once I stopped the hydrocortisone and switched to adrenal cortex, in a matter of days I was able walk eight blocks and build from that, walking further and more quickly as the months went by.

I made the shift to adrenal cortex in 2007, not long before I started my antibiotics for Lyme. It was in combination with the antibiotics, blood thinners, and quite a few other supplements, that I got my physical strength back. Like I said, things are complex.

This supplement is not vegan, or even vegetarian. Thorne Adrenal Cortex is taken from bovine adrenal glands.

I guess this makes me part cow.

Adrenal cortex a medicine. Yes, you can buy it over the counter, but I repeat, it is a medicine. It treats a real medical condition. Your endocrine system is a complicated and delicately balanced network! Meaning, don’t do this on your own at home, kids!

A doctor can run a test for adrenal function if you are experiencing severe fatigue. Please, go to a doctor for help with this. It is A-Okay to be a pro-active patient who brings suggestions to your doctor, especially suggestions from other patients who are posting about them because they work. Be polite, be concise, but ask. A good doctor will be open to your suggestions.

An Additional Note on Fatigue

I get very frustrated with the word fatigue. For me, fatigue meant feeling all day long like my body was made out of some impossibly heavy substance, along the lines of concrete mixed with lead, making it all but impossible to stand up or move around. 


Walking to the end of the block and back (which I stubbornly did from time to time) left me aching all over and unable to function for days and days.

If this sounds like what you’re going through, and you’ve been told you have Chronic Fatigue Syndrome, please consider that CFS is not a very useful diagnosis, or truly a diagnosis at all. Consider that you might have Lyme or another infectious disease, even if you've had a test for Lyme. The standard test for Lyme most internists will give you is wildly inaccurate. Check with an LLMD.

Have hope. I am now running five miles a few times a week, and (as readers of the blog know) spending a lot of time dancing. And getting around Seattle by bike. Things get better if you stick with your medication.







Wednesday, June 28, 2017

DAY TRIP

Young Hare by Albrech Durer

My short story, published by Hunger Mountain, is now online. It's called "Day Trip." 

 And it's also reviewed on the ploughshares website.


Sunday, June 18, 2017

THE EXUBERANT STAYCATION




June, 2017. Is it OK to have fun on this blog? This a post entirely about an orange dancing-girl costume.

Home-made headdresses, past and present.


Here in Seattle, I tend to hold fast to my daily routine, even on weekends. Feeling good means being faithful to what keeps my symptoms in check, and that allows me to do as much as possible in the place where I live. Yes, as has been noted before on the blog, travel is difficult, except for car camping. And yet, can I complain? I live a full, rich life.

But this week, I’m declaring a vacation. It’s that beautiful, dance-filled time of year. When May and June roll around, my samba group is all about preparing for the wonderful, goofball, homespun Fremont Solstice Parade. 

The parade is about homegrown creativity, and it's very much a neighborhood tradition. Over the years, I’ve seen some amazing art in motion on the streets of my neighborhood. I’ve also had moments at the parade, when I’ve looked around and it’s all been so goofy that I’ve thought—really, we’re doing this?—but then it seems half the city has crammed the sidewalks to watch. It's one of my favorite days of the year, and the preparation is half the fun.




People make amazing art for my neighborhood parade.
June is time to go all out!




My classic tomato pin cushion, a gift from my sister-in-law.
Other dancers glue their costumes with a glue-gun, but the fumes
make me sick, so I make mine the old-fashioned way, by sewing.
For my dance group, preparing means making costumes, and extra hours learning choreography. It can come down the wire, and people often stay up late to get things done. But since I can’t skip sleep... well, I’ve decided to do something radical and give up writing for a few days. Usually I hate anything that stops me from writing. Nonetheless, with a few days to go, I’m taking time off to get my costume done. I am declaring a vacation!



Our group did color blocks this year. I was in the red/orange block.
These are my "raw materials": red bra, rolls of feathers.
I bought red dance shorts, too. 


To make my headdress I started by wrapping a frame from floral/millinery wire.
See below for how the frame looked on my head. (Held in place with strap!)


One more shot of the frame. I'm ready for communications
from the space aliens!

But actually, not that interested in talking to E.T.s, so I sewed on feathers.
(Selfie in the bathroom mirror.)


The costume making continues....
My outdoor workspace later in the week
The corset top in progress. I cut up an orange
dress I found at the thrift store. Added some gold adornment.
Sewing the corset top of the dress onto the red bra, including cutting down
the back dress straps to fit, and sewing on hooks. Plus some more gold.

Almost ready...

Secret ingredient. Yes, all the gold on my outfit is gold duct tape. 

JUNE 17, 2017:

Headdress, wings, plus orange dress transformed into dancing-girl costume.




Out with friends...

Photos by Raul Campoverde





Orange is the new orange.


This is Ashley, next to me in the parade and she's totally upstaging me
(and rightly so), but stop looking at her for a second! Look to the right of the photo.
 Yup, that's me, from the back. (Nice gold sunbursts!)
And Marian is behind me, in magenta. So much fun!