Here’s the easiest way.
Please visit me at my new online home – BigGoodThing.com
Hope to see you there!
Please come see me at BIG GOOD THING.
UPDATE – 6:26 am on Tuesday: Late night last night and back up and at it this morning. Pounding away with every intention of pushing the “publish” button before I have to leave for work this morning.
Well, after many delays over the past week or so due to, well, life preventing us from getting the new version of my blog up and running, Jon and I now actually, really, truly, honestly, for real think that tonight’s the night when my freshly re-christened and redesigned blog will be live and online for all to see.
Now, just to be clear, it may be very LATE tonight when the new blog hits the interwebs because kids like to eat supper and have baths and stories and school papers signed and all that on weeknight evenings, but after all of that is accomplished, and offspring are snoozing, we will get to work finishing up all the final details for launch.
We are both very excited about my new online digs, and I can’t wait to invite folks over to check the place out. I hope y’all will like the fresh blogging space too. It was definitely time..
So please check back here later tonight or tomorrow for my announcement of my blog.s brand new name (which I really love), as well as my link to where you can find it/me.
Thanks for everyone’s patience during this downtime. I can’t wait to get back into conversation with all of you. I’ve missed you guys.
I feel compelled to once again sing the praises of Vick’s Vapor Rub, particularly as it can be used on small feet to quiet an overnight cough.
Ever since my discovery a few months ago that the “urban legend” that Vicks rubbed on feet quells coughs is actually quite true, I’ve used this trick for G when she gets her (very frequent) nighttime coughs. I find that it stops the cough cold for at least a few hours at least 85% of the time. Very occasionally, it doesn’t help much. I’m not sure what the difference is. However, it really does the trick almost always.
Last night, G was coughing like crazy after feeling better all day, so we gave her one of the nebulizer/albuterol treatments prescribed for her by the doctor at Children’s the other night. This 15 minute breathing treatment slowed the cough down, but 45 minutes later, her cough was really bad again. So I pulled out my trusty Vick’s and a pair of clean cotton socks, and I slathered up her little feet, then slipped the socks over her Vicksified tootsies. Within 90 seconds, no more cough. She was cough free the rest of the night (sometimes I have to reapply after a few hours, but not last night), and she slept like, well, like the baby that she is.
Anyway, since this is cough and cold season, I just wanted to mention this useful and effective folk remedy again, in case it might help your family get more sleep with less coughing.
I have no clue how or why this trick works, but it really, really does.
Many of y’all have emailed or messaged me to ask how my little sister Betsy is doing lately. I’ve continued to be incredibly touched by & grateful for your prayers, kind words and good advice ever since Betsy fell so ill last April. However, I wanted to wait to share the latest update on her condition until she finished up at the Mayo Clinic, where she just spent 8 days being poked and prodded from every angle.
Now that she’s just home from her time in Minnesota, we finally have an explanation for what it is that’s left her so disabled and in terrible pain for the past 10 months; Mayo Clinic physicians have now conclusively diagnosed Betsy with Fibromyalgia.
In the first month or two after Betsy became sick last spring, she was diagnosed with something called Transverse Myelitis (TM). However, after that diagnosis, we learned to our dismay there is no local doctor who seems to know much about helping TM patients manage the condition once they’ve been diagnosed. Plus, Betsy just kept getting worse, despite faithfully taking the meds she was being prescribed at that time.
She was feeling desperate. She had many questions but no one to answer them. There seemed to be no path forward. Then, late last summer, an old friend of ours was able to get Betsy referred in to see a renowned neurologist at Vanderbilt in Nashville who actually specializes in TM. Betsy’s hopes in going to see him were for a second opinion on her diagnosis, and also for more information on what treatments or strategies might help her. To everyone’s great surprise, this Vandy doctor told her pretty quickly that he didn’t believe she has or had TM, and he also freely admitted that he was frankly baffled by her symptoms and test results. So he decided to run a whole bunch of new tests, including some very relatively obscure ones like checking for paraneoplastic syndrome. However neither that test nor any of the others gave him any better insight into Betsy’s sudden onset (April 2012) severe pain, muscle spasms, neuralgia, cognitive decline and fatigue, so he decided to refer her right away to the Mayo Clinic, where the docs there could review all her records from the beginning, and also examine her starting from scratch, with no preconceived opinions.
So two weeks ago, thanks to the persistence of the specialist at Vandy who was determined that someone would figure out what was wrong with Betsy even if he could not, my little sister and my mother left for 8 days in Rochester, Minnesota. Once she arrived at Mayo, Betsy was checked out in every possible way, and also, once again, all her medical records and testing results – now nearly a year’s worth – were reviewed. And after all of that, the multifisciplinary team at Mayo provided what they really feel is the right diagnosis: Fibromyalgia.
I knew almost nothing about Fibromyalgia before Betsy was diagnosed. Neither did the rest of our family. I had read about it, but only in a general way. Now, of course, we are all educating ourselves as quickly as we can. We have a lot to learn.
Getting this new, rather unexpected diagnosis after all these months was a shock for Betsy, and for us. Obviously, we all hoped that whatever Mayo determined to be the problem would ultimately be curable, while our deepest fear was that they would tell us that she had a progressive, wasting illness like Multiple Sclerosis or Lou Gehrig’s Disease – something that would eventually leave her fully wheelchair-bound before an early death.
However, Fibromyalgia isn’t either of those things. It’s a chronic, disabling syndrome (it isn’t called a disease because of the still-unknown etiology) for which there is no cure, yet. Until there is a cure, my little sister will live with “Fibro” every day of her life from now on, and she will have to learn how to best manage the symptoms. On the other hand, as radically and negatively as this illness has already altered Betsy’s life, its progression isn’t typically one that will end her life. She will live with Fibro. That’s a concept that’s hard for her and for those of us who love her to wrap our head around. We are still processing what this means.
So that’s the latest update: my little sister has Fibromyalgia. Pretty much overnight 10 months ago, she went from an active, healthy mom of three kids, ages4, 9 and 13 (at that time) to a very, very sick person with major limitations on what she’s able to do every day. She’s in chronic pain and her brain doesn’t work exactly right. She can’t sleep and sometimes she can’t walk. And at the moment, I think she’s still in some shock with this new diagnosis, and its implications.
Because there is no cure for Fibro at this time, effective treatment is focused on managing symptoms in ways that work best for each patient’s body. Bets is lucky that there is a local rheumatologist she will be able to see who is highly regarded for her successful management of Fibro patients’ treatment. But a whole lot of the motivation and responsibility for the trial and error process for developing a management strategy that works will be entirely up to Betsy herself. There’s no pill or surgery or transfusion that can do the heavy lifting for Fibro patients. That’s a tough fact to accept when you feel so physically awful and foggy in the head that it’s hard to even manage taking a shower every morning, much less plan and execute a radical lifestyle overhaul with no guarantee that any of it will even help.
My own challenge right now is to avoid bombarding Betsy with advice, information and ideas. I want to text her every blog post I find in which a Fibro patient explains how a certain diet change or medication or supplement made a big difference for her. But Betsy’s not there yet. I am a fixer my nature; I want to make things right for everyone around me – especially my family. But I can’t fix this. I really can’t. So I am trying hard right now to be more of a listener than a fixer. (I’ll let you know how that goes!)
The last three years have just slammed into our previously pretty healthy and whole family like a Mack truck. I have absolutely no doubt whatsoever that for my little sister, the grief and traumatic stress of losing Henry, to whom she was very close, and also the burden of helping to keep me from spinning completely off the rails in that first year after he died, were both part of the complex triggering mechanism for this physical illness.That’s hard for me to think about, but I know it’s true.
However, there’s no way to change what has happened. The only way through is through. Our whole family simply has no choice but to deal with what we’ve been dealt in this perfect storm of loss and illness, and to keep trying to figure out how to move forward with all the joy, grace and integrity that we can muster.
Thank you again SO much to all of you who have reached out to me and to Betsy with prayers, information, love and support since she fell ill last spring. Your kindness and support have meant and still mean more to our family than I’m able to explain in words.
I wish I’d gotten a better photo than this because it was so cute, but this is G at around 6 am this morning when we were leaving the hospital to go home. As you can see, she was super stoked that they let her keep the little rubber dinosaur mask they used to give her the albuterol breathing treatments – so stoked, in fact, that she insisted on wearing it until she got home and fell asleep
It’s just shy of 3am, and she’s asleep now, still wearing the mask you see on her in the photo below. She’s getting her second albuterol breathing treatment of the night from the nice folks at Children’s Hospital. The nurse who got the albuterol started a while ago said she’s rarely seen a toddler so willing to wear the thing without a fuss, and to breathe in the medicine. But G seems to know that this makes her feel better, so she’s been very cooperative.
G just seems to catch every single virus that comes anywhere neat her, and to get it worse than her siblings and cousins ever did/do. Only 14 months ago, she and I spent December 24th thru the 26th at Children’s (Jon stayed at home to keep Christmas up and running for the other kids) because she had caught some nasty, unnamed virus that left her weak and dehydrated.
And now here we are back again. She’s been battling a horrible cough and sore throat for over a month. At one point, we thought it had finally gone away, but only a week later it came back, worse. So our pediatrician started her on a round of amoxicillin, deciding that the congestion from the virus had hatched an infection. The antibiotic was like magic. She immediately felt SO much better, and was jollier than I’d seen her all winter. She finished the amoxicillin yesterday, and then this morning, Jon noticed that she’d started coughing again. By evening she was miserably ill, and when we tried to get her to bed, it became clear that not only was she coughing and (now) vomiting, but she was also struggling to breathe. When steam and Vicks did nothing, and her breathing seemed worse, we decided that I should take her to the ER at Children’s.
That was 5 hours ago. They’ve determined that she doesn’t have RSV or mycoplasma, but she is pretty well sick. Her oxygen sat numbers are hovering around 90. They gave her an albuterol breathing treatment at about midnight that made her feel SO much better for several hours. I thought we’d be going home.
Here she is feeling pretty good between the two breathing treatments.
But then the wheezing and chest tightness started again and now they’ve told us they will be admitting her. But before we are taken to her room, she’s having another breathing treatment – an hour long this time – and they also gave her oral prednisone, which seems to have made her sleepy.
I hate seeing her feel so bad. But I am SO consciously grateful that I am able to access good medical care for her.
Hopefully, we will be home within 24 hours this time. I have my fingers crossed.
Update 5:30 am: I think I’ve convinced the awesome ER doc to let me take her home to give the breathing treatments and prednisone to her there. We live really close to the hospital and I promised we will come back immediately if she gets worse or stops responding to the albuterol.
Update 1pm Saturday: She’s feeling very cheery and her breathing is waaaay better from the ongoing albuterol, etc. She keeps telling us how the doctor took, “GOOOD care of me!”
About a month ago, my friend, next door neighbor & fellow gardenista, Stephenie surprised me by bringing over a tall, blue, glass thing with a bulb of some kind sort of sitting on top. She explained to me that the pretty glass container was made specially to force bulbs indoors, with a narrow top that allowed a bulb to perch and grow roots into the water below – no dirt required. The bulb she’d put into it was one of the hyacinths I’d given her back in November, when we were both in a bit of an outdoor bulb-planting frenzy.
Well as you can see, after I watched and waited patiently for the last few weeks, the forced hyacinth has now begun to unfurl its bloom upward. And it’s beautiful! Like all hyacinths, it also smells yummy and springlike.
After Stephenie gave me the bulb growing in the special bulb-forcing vase thingie, I looked around the house to see if I had anything similar that would allow me to force one or two more (I had some left over from fall planting). Alas, I couldn’t find anything with that narrowing at the top that would support the bulb without letting it sink into the water beneath. So I came up with a different idea. I took one of the gazillion mason jars we have all over the place, and I filled it to just below the rim with small, smooth pebbles. And then I filled it with water, which spread the pebbles out a bit. I put my bulb – a tulip this time – into the jar, resting on the pebbles with water just lapping the bottom of it, just as it would in a proper bulb vase.
And voila! It worked. The bulb has grown great, and I even get to watch its admittedly somewhat creepy looking roots-slash-tentacles work their way down into the pebbles and water as it grows. I then started a third bulb in the same way, but in a smaller, shallow dish. I will move it to its own mason jar soon.
This has been a fun little indoor winter garden spot for me as I impatiently await spring and the start of outdoor gardening. It’s also been super easy; these three guys don’t even get any sun where I have them sitting, and yet they continue to grow quite happily on their low-cal diet of rocks, air and water. I will probably do a whole bunch more forced bulbs next January and February.