Thank you, Dr. Farmer

 

I am heartbroken to see this terrible news.

I have read his biography and followed for many years.

The loss of Dr. Paul Farmer is an immense loss for the world.

Partners In Health will continue to serve, if interested in helping.

(I am not affiliated with either link I shared. Just a supporter.)

Let's just launch 2021 into the sun (this is long!)

Hi.

I know, I know. I keep saying I'm going to start blogging again, but then I get weary and push it further back on my list of things to do with my time. This has been a very hard year. Harder than I've let on, in some ways.

I reviewed my blog and noticed that I complained a great deal. It seems that's all I did. I wish that wasn't the case, but there's no turning back now. Due to not having wifi at home, and my phone signal being wonky half the time, I haven't turned on my laptop very often. I am currently at my bro's house babysitting his pup, and his wifi is downright beastly. So here I am! I think I'm going to just...unload a little. Ok?

I'm not sure where to begin. My brain has been so overwhelmed in 2021, I chose escapism in the form of all things Pokemon just to stay alive. I no longer play the card game (that thing I showed y'all a few years ago), but dove into the anime series again, as well as several video games. It has been a needed distraction from my constant pain. Not in any way a treatment, of course. I often sit and play my games while wishing for the pain to just end me already, but I recognize how important it is to keep my mind occupied and functioning in spite of it frequently convincing me that there's no point in being here hurting this much. Some people don't care for labels and diagnoses, but I am one of those people who needs these things in order to face them. Understanding that I have C-PTSD and Suicidal Ideation in addition to my physical ailments has increased my self-awareness and assisted me in management. I can't say I manage it all well, but I am still here, so that counts for something.

As for labels, you know at age 40, I discovered that my oddly specific form of sexuality had a name: Demisexual. I blogged about it three years ago, and over this time, I have become increasingly more aware of what being in a gray area means. I stated back then that the initials LGBT didn't apply to me, and that's true, but there seems to be a lot more initials attached to the community, so I do fall under the umbrella, most specifically the A-Spectrum. In that blog from 2018, I created a scale to show that I'm not Asexual, but I'm also not Sexual. I'm somewhere in between. I have learned so much from following Queer individuals and communities on social media, and I am grateful to them for educating me. I want people to understand that in the era I grew up in, the word Queer was highly derogatory, but that I have trained myself to accept the term to describe people who use the word as their identity. When we know better, we do better, as the saying goes. It's gravely important to evolve in this everchanging world, and I would never want to offend someone for being who they are. I have a sincere and sometimes heart-wrenching admiration for many people who fall into this category.

I'm still learning, and still processing my own life to understand myself. Now knowing that I'm Demi-Gray, and recalling (just this week, I realized this!) that I have a long history (since elementary school!) of having platonic crushes on gay men, the word Queer actually applies to me also. And here I was (for decades!) thinking I was an outsider simply doing my best to be an ally.

I really appreciated this article, which talks about the asexual spectrum and demisexuality. It's probably the best thing to ever come from Mashable.

Life is so strange. I used to absolutely hate the phrase "never say never" but the universe sure loves proving to me that I shouldn't say it. Ha! I won't say it has been a simple or happy thing; defying social constructs through no choice of your own is challenging at best, horrifying at average, and life-threatening at worst. I have experienced all of the above in the past, as well as the present. All I can say is that has been and will continue to be a work in progress.

That's what we all are anyway, right? A work in progress. At least, that's what we should be. I don't understand people who refuse education and reject changes for the betterment of humankind. Is it fear? Probably. But we can't force people to practice humility, accept education, or have courage. All of those things come from within. All we can do is be an example of what's possible.

That was a bit heavy, so thanks for reading.

My physical health remains a daily battle, and I have some scary times when I feel as though I am quite literally dying. If I ran off to the ER every time I felt this way, I'd have to set up camp in there. I ride out nearly all episodes at home, with the exception of dehydration or kidney stones. The migraines are out of control again, and I've had at least three stones this year (including the one trying to pass now). I feel like I'm going to drop dead when I do laundry, exert myself around the apartment, or run errands out in public. I've fallen or passed out a couple of times lately. My muscles are volatile. Sometimes they can't move (paralysis). Sometimes they move too much (myotonia). Most of the time, they move with intense effort and pain. Some ion channelopathies are a living nightmare, and lucky me [/s], I have more than one.

Should I finally reopen the medical blog, or just keep talking about it here? I'm still undecided. If I do go back to it, you'll find the link in my sidebar along with other links.

I have seemingly endless updates to make on my art blog as well. I stopped posting there a couple of years ago, and I have created a great deal since then. I may talk to someone about building a page for me and just start all over with a new art portfolio. Acrylic pouring has been fun, and I am starting to learn manga. My favorite will always be oils, I imagine. Despite the Bob Ross fiasco currently happening due to a documentary on Netflix (it's bad, y'all), I don't regret living in Florida for six weeks learning how to paint. And I would still return to Florida again if I could...although I would invest in other Arts next time around. There is an art center in New Smyrna Beach that I'd love to visit someday. Of course I'm too sick to go anywhere, so it's merely wishful thinking unless my health improves.

My brother and I have lost a lot of people this year. In addition to COVID and other deaths, he is going through a divorce, and almost lost his foot, and now he is having surgery in a few days. Christmas is canceled. Neither one of us have the health to think or care about it. I sent gifts to my nieces and nephews (because I'm still the cool Aunt, thanks) but otherwise, bro will be recovering from surgery and I will probably end up eating waffles. We'll see.

I did have a nice Thanksgiving. I was in a lot of pain, but visited family down the road at their beautiful bay home. I got to hug my precious cousin Tyler (he's my favorite) for the first time in years. We ate great food and I talked to family about my health. In a moment of bravery, I even mentioned the SI, but made it clear that I am managing. I don't know how they're feeling about our time together, but I'm glad I went. I shared pics on social media, if you're on there.

I have a new niece due in January. Her name will be Allie Mae. Even though I'm relieved I didn't bring a kid into this world (I've been abstinent for 18 years to make sure I didn't - you're welcome!) Aunt Kelli loves babies, and I can't wait to hold that little country bumpkin when she arrives.

Maybe I should stop here. This is a good place to close. I'll be back on NYE, if not sooner.

Much love to you all.

On the waves of sadness and loss.

I learned of Kay's death on Christmas at midnight.

My friend Robin's mom Tressie died today. Her daughter died in October. Sweetest people you'll ever meet. It has been a day of many tears.

I'm also remembering several friends this week who died years ago, including Deanna, Vicki, Sasha (Alexander) and Brandi. And of course Zollie, and my art student Mark who all died in the month of December. And I miss my grandparents.

Malisa is still in ICU. I hope for a miracle so she can go home to her family. She has an 11 year old daughter.

There is a lot of suffering and frustration with this pandemic. I worry about friends, family, and doctors. I don't think the COVID vaccine will be very safe for me (flu vaccine wrecks me badly), but I know I'm going to have to take it anyway, and just hope for the best. What's the alternative? There isn't one, especially living in a place that is being so profoundly stupid about this. I can't trust anyone. I had two scares, as I was exposed to COVID twice - the first time by a friend, the other by a relative - both times in an enclosed space. Miraculously, I didn't get it. I tested negative both times, and have no antibodies. I tested a third time before Thanksgiving, voluntarily at a free drive-thru, and received no results because Mobile County Health Department is careless. Not sure what the point was in opening "before you decide to travel" testing locations before the holidays if we weren't going to know one way or the other. At any rate, I didn't travel, and I know I was negative despite feeling like utter crap all the time.

We lost actress Dawn Wells today. She "socially distanced" on Christmas, and died of COVID anyway, six days later. There's not a lot of hope in that. It's pretty scary to think about.

I'm trying to get used to the fact that I need to stay home and stay away from everyone until further notice. I'm an introvert, but being completely shut off from the whole of society is not the same thing. The introvert jokes make me laugh and wince at the same time. I was fine for the first few months. Then things got worse, and there was good reason to be upset, frustrated, scared, and just plain tired of it all. But I'm preparing to do the right thing and continue to isolate in 2021. I stocked up on non-perishables. I resubscribed to a meal kit service, which starts January 6th, so ingredients will be delivered to my doorstep on a weekly basis. I'll drink a lot of soup, make artisan bread, and occasionally hit a drive-thru. No sit-down restaurants, no parks, and limited grocery store runs for perishables like dairy. My little brother gave me a gaming subscription to help me pass the time, and I have my other games, and I have art supplies and books to read and adult learning apps. I have a novel to finish! I still have social media to rant and rave and keep in touch with people who want to keep in touch with me. I remind myself that I'm safe where I am, and that I am fine as long as I have access to my meds and don't get any sicker.

I am deeply sad for the losses we've suffered, and as always, grief comes in waves. The best we can do is let it wash over us without getting pulled under. So let's all hang on for our lives; together, but apart.

Tribute to Justice Ruth Bader Ginsburg

I have wanted to say something, but it wouldn't be adequate.

This is a very nice tribute to RBG, followed by additional videos of interviews if you choose to view them.

Rest in peace, and thank you for being a "notorious" heroine to so many.

Another HKPP Loss

Chovan Vic Cacho Banate founded the HKPP Network in the Philippines region. In the first week of May, he experienced a trigger which dropped his potassium critically low. He contacted the U.S. HKPP Network (my friend Ralph) and they spoke briefly about his symptoms, which had escalated into labored breathing. According to one of his friends from the Philippines HKPP network, he was taken to the emergency room in respiratory distress, where he was ignored while the staff was screening potential COVID-19 patients. He died of respiratory failure at age 35.

I don't know what to say anymore. When are we going to be taken seriously by emergency medical staff? Why would we be there asking for help if we weren't desperate for it? These travesties are breaking my brain and my spirit. It's 2020, Hypokalemic Periodic Paralysis has been documented since the 70s, and here we are. Another friend, neighbor, uncle, son, brother, advocate...gone for no reason.

The hospital is 100% at fault for this man's death, and they will never be held accountable. Tell me where the hope is in that?

Rest in peace, sir. I'm so sorry this world failed you.

I want to talk about someone who died ten years ago.

http://blog.al.com/live/2008/12/dentists_no_need_to_fear.html

My stepfather's biological son, Ryan, age 29 and a single father, had a toothache that he was too scared to address. He had a fear of needles and refused to go to the dentist, even when his tooth was noticeably infected and his relatives begged him to deal with it. He came home from work one day with a swollen jaw, said he couldn't hear out of his ear, and went to the bathroom. He didn't come out. The infection had reached his brain, and he was diagnosed with a massive stroke. A week later, he was removed from life support, and his 5 year old son was orphaned.

I am telling you this to bring awareness that these things really happen, and they happen more often than you think. I don't like going to the dentist either, or any other physician for that matter, but listen: you have to take care of the damn holes in your head. They can kill you, and don't think for a second that it can't happen to you, because my 29 year old stepbrother certainly didn't think he would die a horrible death and leave his child parentless. Ryan's death was a front page headline, and dentists in the area made a plea to the public to let them help. There are ways to deal with this kind of situation, including sedation with prescription drugs, which could have allowed Ryan to get the care he needed. If he had been willing to talk to a dentist about his fear, he'd still be here. Bottom line.

It has been a little while since I've made this public service announcement, but I assure you I had not forgotten. Seeing him unresponsive, connected to tubes, with a hose coming out of his brain and a horrifying intracranial pressure of 84 is something I will never be able to erase from my memory.

If you have an infection, please take it seriously. I know the dentist is expensive, but many of them accept monthly payments, especially for potentially harmful scenarios like this. Beg, borrow, whatever you have to do to get the money. Cry on the dentist's doorstep. The worst they'll say is no, and there are others out there who will say yes. Communicate, or find someone who will speak on your behalf. Just go, please.

Thanks for reading.

Another Periodic Paralysis Patient Lost

Kendra Rowan has died at age 33. She was a highly gifted artist. This is such an unfair disease and the loss of this young woman is more devastating than I can express.

I can only hope my obituary is half as nice as this one when it's my turn to go. As it states, Kendra was a volunteer at Common Art for the Homeless. In lieu of flowers, the family suggests donations be made in Kendra's name to Common Art for the Homeless. Send checks to: Common Cathedral, 15 Newbury Street, Boston MA 02116 (write "Common Art" in the note section). You may also donate online at http://commoncathedral.org/donations. Where it says "Add special instructions to the seller", write: "Direct to Common Art".

I'm so angry I can't stop crying.

I'm taking a break. I don't want to talk about this anymore.

Proud to be one of Annie's kids

I just received word that family friend and town legend Annie Rogers passed away at age 104. What a legacy. She was the most loving soul, and considered everyone "her kids". She's one of my first memories as a toddler going into her store, Grand Bay Drugs, with my brother and mother, sitting in the shopping cart holding onto my Anne Murray album cover for dear life because it was my security blanket. Mrs. Rogers absolutely adored Layton and me and always stopped what she was doing to give us a big hug and kiss. Here is a video of her from ten years ago. I stood at that register with her countless times talking and reminiscing. She will be greatly missed!




We know how much you loved all of us, Mrs. Annie, and we sure loved you.
Rest in peace, my lifelong friend.

Unloading the unruly thought muscle (a few pictures, too)

I just laughed out loud calling my brain a thought muscle. That's accurate, though, isn't it? Never mind. I'm a gooberhead.

My sister-in-law gave me Zollie's walking cane. Most days, I can get around my apartment without assistance, but I'm weaker than usual from low caloric intake. It has helped with my balance around the apartment. That sweet man is missed, but I honor his memory by doting heavily on his dog (who I regretfully can't find a picture of right now) every time I visit my brother and SIL's house.

In spite of my efforts at minimalism, I do still collect postcards and Pokemon cards. If you like trading or would just like to send me some (I would love you lots!), email me at ugottafriend4life@gmail.com for a P.O. Box #.

I sure miss my nieces. I was supposed to carpool to Louisiana to spend a couple of weeks with them around my birthday, but my decline with Gastroparesis landed me in the ER instead and life has been a bit of a downward spiral ever since. I hope to see some improvement so I can go soon.

I lost all of Deanna's text messages when I had to reset the phone recently. She was my only close friend in SoMo (South Mobile County), and I still feel a wide range of emotion when I drive through her part of town, because she's no longer here for no good reason. I'm sad for her kids, who were separated, most of all.

All I have to say about Penzey is right here.

I decided to reopen my Facebook to follows if you want to holler at me or lurk like an introvert (because that's OK too). Public posts involve health updates, so consider that your TMI warning.

And now...*DEEP BREATH*...I hope I don't regret this:

My LinkedIn

My YouTube

My Instagram

My NaNoWriMo
My Fitness Pal
My very quiet Tumblr

My Amazon Wish List

My Genealogy Blog (much more on the way soon)

Silly, sappy, angry, obnoxious, unfiltered me is here. Enter at your own risk, or something. Honestly, if you can handle me on Twitter, you can handle me anywhere, because it's only up from there. In all seriousness, I don't bite (unless you deserve it, LOL).
*RUNS AWAY BASHFULLY*

I am one of only 1000 people in the world who owns this silly calendar. John and Hank Green (aka Vlogbrothers, and yes THAT John Green) are two of my favorite guys. They are YouTubers, authors, and founders of a great non-profit organization that raises millions of dollars through their annual Project For Awesome. Nerdfighteria is a fun group of misfits, and it has been cool to see how this whole thing has grown (more like exploded) over the years. Glad to be a part in some small way.

I guess if I'm going to be forced to live on liquids, I might as well bring out this piece of fine nostalgic geekery to help. :-)

I've lost 19 pounds in less than a month. Being overweight is irrelevant. Even my Lose It app is telling me to stop this crazy train. If only I could. Losing the ability to digest solid food has been a difficult turn of events in what is already a challenging existence. Most of the food that I recently vacuum-sealed and put in the freezer, I've given away.

I am staying hydrated as best as I can, and I'm still trying to take in liquid calories, but currently I am averaging less than 300 a day. Every time I drink anything other than water, I feel like I'm suffocating. I have to fuss/pray/fight to keep what I swallowed from coming back up, while my stomach reminds me that it does not approve of any of this by twisting into a hundred Celtic knots.

The recently-prescribed medication isn't working. I miss food, but I'm trying my best to take this all in stride. Some days (hours? minutes?) are better than others. At times, I am finding reasons to smile and searching for a silver lining (I'll be able to wear my favorite pair of jeans again soon). Other times, I am nearly in tears from the pain and I feel like I am dying a gradual, horrid death.

I don't know how, but I'm going to beat this. Just you wait and see.

Today Is The Day For... #1 (Carpe Diem Journal)

Today is the day for preparing for Christmas.

It doesn't feel like Christmas. Two loved ones have died within seven days of each other. I missed my student/friend Mark's funeral because my car isn't running well. It hurts, because I know he would have been at my funeral had it been me to die first. He was too young, and I'm sorry for his family.
Zollie, my brother's father in law, was the sweetest man you'd ever meet. He told me only a few weeks ago that he had "adopted" me as one of his girls. I told him I was honored. Now he's gone. The funeral is the 27th. I don't think Christmas will ever be the same. It certainly won't for his real daughters.
My stepfather has the flu, but is thankfully recovering. I panic when I think about losing him someday. Sometimes my anxiety and depression barge in when I think about it. I'm trying to tell myself to stop grieving over people who are still alive. I'm grateful he's here. I don't see him much anymore, but I'm glad he's doing ok and living his life as he wishes.
It's 3 A.M. so I guess I will try to nap before cooking for tomorrow's Christmas dinner. I don't feel like celebrating, but those who have gone from this Earth would want me to.

Family Loss

My sister-in-law's dad, the sweetest man you'd ever meet, told me on Thanksgiving that he had adopted me as one of his girls.

Last night, he collapsed and died.

Zollie will be missed terribly, and I was honored to be his "adopted" daughter.

Another Friend Lost

From a class in 2010

At my art show (I don't remember the year)

I am heartbroken to learn that a student and friend has unexpectedly passed away. He was the first person on the doorstep of my classroom on day one, and was loyal to my last day and beyond. He was the most friendly and content man, and it was because of him that I was able to instantly put aside my social anxiety to teach the joy of painting. His presence and his smile were a comfort to me and undoubtedly everyone who knew him. He loved his family and his church, served his country, and was a volunteer in storm relief and Heaven knows how many other charitable efforts. He has left an impact on this world, make no mistake of that. I will be forever grateful for his warmth and support through the last decade of his life on this Earth, and he is already missed.

I have lost a wonderful friend

She died in her sleep. No cause known at this time.

I had talked to her mere hours beforehand.

It seems so impossible. I am sad, angry, shocked.

She was a funny, empathetic, loving and kind person.

The loss is immense for everyone who knew her.

Funeral tomorrow. Please spare a thought for her children.

Rest In Peace, Princess

Credit: James Hance

This is a devastating blow to what has been a year of immense loss in the Fine Arts world. Thank you, Carrie Fisher, for your talent, your humor, your honesty, and your advocacy. You will be missed by so many.

Edit Note: It has taken me awhile to come back to this, but I just want to acknowledge the fact that her beloved mother Debbie Reynolds passed away the following day. It left me pretty speechless. I can't imagine what Billie went through, losing her mother and grandmother within 24 hours of each other. I wish her comfort and peace as she moves forward after this profound loss.

Orlando Love

Sunrise at Rosen Shingle Creek

October 2013

There are really no appropriate words

when something this terrible happens.

All I know is my sadness is profound,

my love for Orlando is bigger than life,

and I cling to hope that, somehow,

we will never see this happen again.