Giving, GERD, and Genes (oh my)

Hello my friends. It’s November, and I continue to be waylaid from writing my monthly post by other, very stressful things in life. And the weather. Storms and colder temps increase my symptoms and make me feel worse, so, well, I have felt extra crap. I currently have a very horrible headache at the top of my neck / the base of my skull, one that started yesterday and won’t go away. I would really like to chop my head off, it hurts so bad… And my eyes are so dry, they feel like little cinders. And yes, I would prefer to be asleep. Garfield gets me.

Thus, instead of trying to put together a coherent, long-form piece, I decided I’d share a bunch of random thoughts I’ve been having…. which has turned out to be more than just the three topics in my headline. (However, the alliteration amuses me, so I’m leaving it.)

The day before yesterday was the 15th, the day I was supposed to publish, but obviously did not. I worked on this post yesterday, but my head pounded too much for me to trust myself enough to publish. And it didn’t happen on my regular day, thanks to being in a crash for four out of the previous six days, with one of those non-crash days spent at doctors’ appointments. (A “crash day” is one where I can’t do anything at all; I’m just so ill, I’m stuck in bed. If I’m lucky, I’m asleep for part of that day.)

Sorry, I don’t know who originally created this image, tho I tried to find the source. However, I do hope my readers will shop indie!

Since it’s November, that means it’s the start of ye ole holiday season. In the past, I’ve published a couple gift guides, but I’m too tired to do so this year (and I’m too tired to update the gift guides I’ve already got).

So, here’s a couple from bloggers I follow, with some great ideas:

• A Journey Through the Fog: The Ultimate Spoonie Christmas Gift Guide
• A Chronic Voice: What Your Wish List Looks Like When You Live with Chronic Illnesses
• Brainless Blogger: 10 Great Christmas gifts for people with fibromyalgia

My dragon, hand-made by Carol. Alice named her Tamsin Peony (at my request for a name).

If you’ve read my blog for the last few months, you’ll remember that I’ve been asking people to donate to my friend Alice to help her with expenses for a power wheelchair. (You can read about her in her guest post.) In addition to asking for donations, she has worked very hard to raise some funds herself, including car boot sales (flea markets, for those of us in US), and bingo. (I can’t remember what all.)

To help out, Alice’s ‘internet mum’ Carol is offering a gift to anyone who donates at least £20 to Alice via her gofundme or her paypal – she will hand-crochet you your very own dragon. Mine arrived a couple weekends ago, and I lurrrrveeee her!!!!

In this season of giving, there are two great deals going on right now to double or triple your contribution to ME/CFS research:

• Open Medicine Foundation Triple Giving Tuesday – from October 22 all the way until December 3, OMF will TRIPLE your contribution to ME/CFS research, thanks to several generous donors who offered to match donations up to $666,666! The name refers to the annual tradition of Giving Tuesday, December 3 this year, the day after Cyber Monday, but donations will be tripled EVERY day between now and then. Just click the link to make your donation. It doesn’t have to be a lot – every little bit helps, especially when it is tripled!

• Solve ME/CFS Initiative Double-Your-Impact Challenge – thanks to several anonymous donors, any donation you make to Solve ME/CFS from now until December 31 will be doubled, up to $750,000! They are hoping to meet a goal of $1.5 million in total donations by the end of the year. Just think of all the great research that can be done with that money!

These are two outstanding opportunities to make your money go further and give a gift that will help all of us this holiday season! Click the links to donate TODAY, watch your donation get doubled or tripled, and contribute to important ME/CFS research. You can even share the links with family and friends and tell them that THIS is what you want for your holiday gift.

Almost all of the amazing research breakthroughs in ME/CFS in recent years have come from private donations (and much of it from these two excellent organizations), so this is a great way to keep the science moving forward…for a happier New Year for all of us!

Happy Holidays and Happy Giving!

dSavannah note: a HUGE thanks to the blog Living With ME/CFS for giving me permission to use the above wording (starting with “In this season of giving”) from their most recent post! Saves me a bit of brain power. Be sure to visit their blog! (You can also find them on Facebook.)

Y’all my voice is gone again. You may remember (or don’t remember, if you have brain fog; or have no idea, if you’re just visiting for the first time), that I first lost my voice on May 11 of this year, after crashing from doing advocacy for the #MillionsMissing awareness campaign for Myalgic Encephalomyelitis (MEcfs). After my voice was gone for 26 days, I saw an ENT who told my that the GERD (acid reflux) I had corrected via Nissen Fundoplication surgery in 2010 is back.

I don’t have a good image for this section, so this funny meme that goes along with my header comic will have to do.

I had a test with a tube up my nose and down my throat for 24 hours – it measured the pH in my esophagus, which proves, without a doubt, that the GERD is back, and is moderate-severe. Oh boy. Without that test, I would have sworn my GERD was gone for good – I’ve had NONE of the symptoms I had before surgery. But the acid inflamed my esophagus, and my vocal cords, and my false vocal cords, and voila – voice go bye bye.

So back on acid reducer medication for me…

(Aside: Nissen basically takes part of your stomach and folds it around the esophagus to create a ‘wrap’ that then mimics what the sphincter at the top of your stomach is supposed to do – not let food and acid up into your esophagus.

I had an endoscopy and colonoscopy in 2015. The gastroenterologist who did it said there was nothing wrong, and to come back in 10 years. I got a hold of my medical records, and the report from the person who actually read those results stated that I have: gastritis, hiatal hernia, moderately loose Nissen wrap, localized mild inflammation characterized by erythema in the gastric antrum, and esophagitis. In short: I should have been treated for this FOUR YEARS AGO.)

My voice finally came back after 63 days. Then I’d lose it again for a few days, and it would come back. Then I had a phone conversation and lost it for 2 weeks. Then it would come back. I had a phone conversation on Oct 24, and guess what? It’s gone again. Today is day 23.

Obviously, I cannot speak to those who live with being deaf, mute, and/or hard of hearing all the time based on what little I’ve experienced, but I can tell you one thing: the world is not set up for someone who cannot talk. Especially not a person who is a full-time chronic illness patient and their job basically involves talking to doctors and insurance. On the phone. (I managed to return a couple calls to doctors on Wednesday, but that means my voice is completely gone again.)

In what can only be called FAKE NEWS (for realz), a recent article posted in the Times of India has the headline “Why Social Media Friends Don’t Count”.

I was first alerted to this on Twitter by Erin Gilmer, esq., a disability attorney, who shared the original tweet:

people who have ‘social media friends’, ive got bAd nEws for yall 💀 pic.twitter.com/4p400Vr8Yu

— rashmi | sanika day✨ (@hyyhaze) November 3, 2019

My reaction? and the reaction of many many other people who have found amazing friendships online? A giant eye roll. I think I managed to see the 1980s. (Never mind. It’s just that the fashion is coming back. And all I can say to that is WHY??!? WHYYYYYY!??!?)

For me, and many others, social media is a lifeline. I have learned so much about my conditions from being able to talk to other patients. I’ve gotten support when I’ve been having a bad day. I’ve been able to support others when they are down. There are people I call my friends, and my family, who I’ve never met in person, and probably never will.

I especially found this statement heinous and patently untrue:

Believe me, I have cried many a time on a virtual shoulder, and my virtual shoulder has been cried upon too. Just because I can’t see the tears, doesn’t mean they are any less real. Oh, yeah, and most of my “real-world” friends disappeared when I got sick, as I talked about in my post F is for … friendship.

I also had to laugh at this response, cuz yeah – my penpals were also my friends! (and it wasn’t all that long ago when we communicated solely via the mail!):

The bizarre thing about this is, back in the old days, when world travel was slow and difficult, some people maintained vital, sustained friendships through letters. Writers, scientists, artists, and ordinary people, some of whom never actually met in person.

— MiguelClarkMallet (@mar_de_palabras) November 4, 2019

Oh, and for the record, Alice is a social media friend who I’ll probably never meet in person, but she is quite dear and special to me.

So, for those of you “imaginary friends” in my life – THANK YOU! for being my friend. I wouldn’t make it without you.

I had a comment on my post what a pain from someone saying they were now interested in having their genetic testing done. As I responded to them, I had my DNA tested by a medical testing company, ©DOCTOR’S DATA, INC., and it was ordered by my physician.

There is some benefit to doing the 23andme test and then submitting it to Genetic Genie, which can take the data from 23andme and then run a free methylation and/or detoxification profile. Both of these provide a lot more info than the test I had. I’ve been considering having that done as well. (And the full kit – 23andMe DNA Test – Health + Ancestry Personal Genetic Service – includes 125+ reports on Health, Wellness, Ancestry & More [affiliate link] – is currently on sale on Amazon, and if you have Prime, then free shipping.)

I feel the more info you know about your body’s processes, the better, and it can help you figure out the best way to treat your health issues. (Instead of blindly stabbing in the dark, like I did for so long.)

If you’re a chronic illness patient, and have to take lots of meds, like I do, you probably have trouble remembering what to take when. A doctor I saw a few years ago who was otherwise a, erm, not-pleasant person, suggested that I create a spreadsheet to keep track. So I did.

Well, it’s actually a word document with boxes. Since I’m a giving person, I created a blank(ish) document that you can download and personalize for your own needs. Download the file ‘meds_schedule_template’ from dropbox (created in word, but works in google docs as well. You don’t need a dropbox account to download it). I wouldn’t know what meds to take when without mine.

I use one document per week, and when I print it out, I just write the date on top. It’s divided into columns for the time of day: anytime, morning, midday, night before bed, and right before bed. (Of course, you can change those categories to whatever works best for you and when you need to take your meds.) I cross off the letter for the day of the week as I take each pill. I’ve also started scribbling the time at the top of each column, since some medications have to be taken on a very rigid schedule.

I hope this helps someone!

PS: If you enjoyed what you read, and aren’t currently a subscriber, then please follow my blog! Simply enter your email address in the box under “Follow dSavannah Rambles” that’s on top of the right-hand column. (Or, if on mobile, scroll aaallll the way down to the bottom of the page and enter your email address in the subscribe box.) Thanks!

Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in almost five years, and I get no disability benefits – and my medications and supplements alone cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• by donating via paypal
• or sending me something from my Amazon wishlist (now conveniently separated into categories: Miscellaneous stuff., books for my hoard! , dSavannah’s health needs, low priority: crafty stuff, and music I’d like).

A giant THANK YOU! to the person who sent me four! items off my wishlist this past month! The amazing thing is that I don’t know this person, and I can’t figure out how they might have found me or how we’re connected. I am truly grateful for this person, and everyone who sends me anything.

This support keeps me going, even in tough times.