I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Saturday, November 10, 2018

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.



Tuesday, November 6, 2018

Monday, November 5, 2018

Living, Voting, Dieting, and NaNoWriMoing

I just turned in paperwork to renew my lease next month. I can't breathe in here half the time and wish things would change. I'm miserable. At any rate, I'll be staying until something else happens. All I can do is continue to look for safer housing and apply if the waiting list is open. I have no other options on social security.

I am ready for voting day to be OVER!!! I'm fighting not to take a nap today, so I can go to bed early, so I can get up at dawn to go to the polls.

As I frequently am, I'm still trying to figure out a proper diet with systemic disease. This year, I've been stuck on a lot of liquids and soft foods due to Gastroparesis, but that diet affects my Muscular Dystrophy, which I'm supposed to be paleo, so some kind of happy medium is the goal. Unfortunately, it's not happy most of the time. At all.

On the bright side, it turns out frozen coffee doesn't have as many calories or fat grams as I thought. This is a good thing, since I can't seem to give up caffeine. Between that, baked fish, and soups, I can stay under calorie goal. It's when I bring out the bread, fiber, or cheese that things get complicated. I'm creating a new menu plan (again!), but my menu plan will not include Tuesdays, for it is Taco Tuesday, and $1.50 soft tacos from Kain's will be had. My Mexican food shall not be denied. Unless Gastroparesis says otherwise, that is. I don't get a choice when it rears its ugly head, as I've mentioned many times.

NaNoWriMo is going well, I guess. Voice typing is spectacular. I downloaded the Google Docs app on my phone, and I'm able to voice type while lying in bed. That's a big deal for someone in my condition. I'll reach 50K by Thanksgiving, as long as I continue my current pace.

It's noon now. Time to put on some soup, I guess.

Thursday, November 1, 2018

My 6th NaNoWriMo, and why I'm not working on my children's novel

It's that time again.

I didn't know if I would participate this year. I seriously considered skipping it, but I joined a couple of forums, started talking to others on Twitter, and signed up. I'm a NaNo Rebel, as I often am, which means I'm working on something other than a brand new fiction novel. If you're new here, I have a rough first draft called The Children of Mossy Hollow, and I absolutely intend to complete it and self-publish. It's a mess, though, and needs a lot of revision. I will eventually focus on doing that.

Why not revise during NaNo since I'm a rebel anyway? I could, but my stress level and emotions are heightened at the moment by what has happened and continues to happen on our southern border. My book is based on a true event that occurred in my own family tree involving children who were separated from their parents and each other and adopted out into various questionable situations. It's an emotionally-charged story on its own, and I've shed plenty of tears over these kids. But needless to say, it's even more painful to think about now. It's on the back burner for the sake of my health.

I am working on other projects, including a memoir and my family history. Nothing will be published here, but when I have comprehensive text concerning my genealogy, it will be over on that blog.

Talk to you later - NaNoWriMo awaits. (Send caffeine!)

Friday, October 26, 2018

New Hair, and a Video Blog




A very nice friend spontaneously paid for a haircut yesterday.
I've been in incredible pain lately, and feeling very badly in general.
I appreciate their kindness, and my hair is in much better condition now.


Here's a terrible video blog with my new hair, my big face, my Jay Leno chin, and my shy, mumbling Cajun accent, as always. I am severely sleep-deprived, and apparently itchy.

Thursday, October 25, 2018

October Updates - A List of Sorts

Listening To: 
The Anthropocene Reviewed by John Green: I love all things John Green, even his stressed-out soccer tweets. Ha! He's a good guy, and the podcast is a quick listen (18-20 minutes per episode).
Plot Threads: My nerd pal in Canada co-hosts a podcast. I've listened to it.

Watching:
- Brain Games on Netflix
- Pokemon on Twitch
- Doctor Who on BBC

Books Read: 

- The Tell-Tale Brain by V.S. Ramachandran: I thought this was going to be great, but he simply would not shut-up about humans being nothing more than apes with highly-developed brains. I listened to it for hours, and finally said "enough". There are some interesting stories, so it could be worse. One of his major focuses is on Autism, but having acquaintances on the Autism spectrum who are deeply against labeling it an impairment, I was uncomfortable with some of his language (even if I did agree with some of it). It's a complicated subject, I realize, and we have a lot more to learn.

- The Stress Solution: Using Empathy and Cognitive Behavioral Therapy to Reduce Anxiety and Develop Resilience by Arthur P. Ciaramicoli: The formatting of this eBook was a wreck, but the content is a must-read if you want to know how to effectively communicate. I believe every patient, every doctor, every parent, every spouse, anybody should read it. Even if you already think you're a good listener and consider yourself empathic, you will learn something. I know I did.

- How To Think More About Sex by Alain de Botton: Awful. I wish I had never read it, as it resulted in me unsubscribing from The School of Life entirely. My short review is here, and the much more detailed review I referenced in my review is here. Had I known he was stuck on Freud's absurd sex theories, I would have never given the book a minute of my time. Disturbing. A side note, since I know some readers are wondering why I picked it up to begin with: I am not in a relationship, but plan to pursue a range of therapies, if finances allow (that is a very big IF), including PTSD-related sex therapy. I was hoping with this book to find a healthy, normal view of sex, but no. The book was a mistake. The end.

- Goodbye, Things by Fumio Sasaki: It's a book about minimalism, and I gave it a good review. I liked it more than Marie Kondo's book.

- The More of Less by Joshua Becker: Also minimalism. Not my favorite, but not at all bad. It is somewhat Christian-based, but he made a point to respect other philosophies as well, which was nice.

- Solo Cooking for a Sustainable Planet by Joyce Lebra

- Meditations by Marcus Aurelius

- Ilvermorny School of Witchcraft and Wizardry by J.K. Rowling: This is a short story available on Rowling's personal website Pottermore, and can be read here. It is the story of how Hogwarts School makes its way to North America under the name Ilvermorny. As with Hogwarts, there are houses where young wizards and witches are sorted into houses based on their inner character. I took the test, and was sorted into Pukwudgie House, which represents the heart and favors healers.














Never fear, church folk. I'm not a witch. It's 100% fiction. :-)


Currently Reading:

- Still reading Anam Cara by John O'Donahue
- Started The Hobbit by J.R.R. Tolkien

I've exceeded 60 books in 2018, probably 75 or 85 since last November (haven't really counted back that far), so I have officially reached my Goodreads goal. I'll begin a new goal in 2019.

Housing: I've gotten nowhere fast. The one place I used to be on a waiting list for in Mississippi is not smoke-free even though they are under HUD, and they weren't even very nice about it when I asked. They flat out said they don't have to and will not comply. As for Alabama, I'm getting the same story. Central Louisiana claims they are smoke-free, but I have no way to confirm that they enforce the ban, and there are serious issues with moving to Louisiana that I won't get into right now. If my current apartment complex chooses to renew my lease next month, I will recertify to stay here. If they don't, I will be homeless. That's where I'm at right now, and needless to say, it's a very stressful place to be. (Edit Note 10/26: This was discussed today. They will recertify me as long as they keep funding. Their huge government inspection happens from Monday the 29th through the middle of November. As long as they don't fail, I'll be able to renew my lease in December.) My breathing is ok more than 50% of the time, but there are certain times that the neighbors smoke in their apartment when it makes its way to my side (we share a wall, so all I can conclude is that it's a construction issue), and I'm instantly ill and have to shut myself in my bedroom with the air purifier. I have friends who have these illnesses around the world who say they are very grateful that they don't live in the United States because they see how difficult things are for me and their other American friends. That says it all.

Health: I went to Jackson for MDA clinic on October 2nd. That update is on the medical blog.

Here are a few of my brother/sister-in-law's wedding pics, as promised:

Niece, Sis-in-law, Brother

Little brother toasting big brother
(they both almost cried) :-)

With the exception of the bride and groom, I am older than everyone else in this photo by many years (it's a half-sibling situation, thus the age difference and their lack of Familial Periodic Paralysis).

The wedding colors were Red, Grey, and White because Roll Tide Roll!
That's so hillbilly, but I loved it and I love them.

It was my favorite wedding I've ever attended.
Small, elegant, and in a nice location.

Talk to you soon.

Sunday, October 14, 2018

Hurricane and Tsunami Relief 2018

I apologize for the delay in regards to the recent natural disasters. I've had a turbulent time in my head lately. I did some mild prep for Hurricane Michael, but it missed me completely, and I do not take that for granted whatsoever. I'm devastated for the Florida gulf coast and parts of Georgia in their immense loss and suffering. All of the memories of Hurricane Katrina came back, and I'm sad to know that others are now living the nightmare that my neighbors and I once did.

While my site was offline, a tsunami occurred in Indonesia, and Hurricane Florence caused terrible flooding in the Carolinas. All of these folks still need a lot of help. I can tell you first-hand that disaster recovery is a terribly long and stressful process.

I felt like the best thing to do was consult Charity Navigator for a list of organizations aiding the areas in need. Following are the links to those lists:

Hurricane Michael: https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=6806

Hurricane Florence: https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=6709

Indonesian Tsunami: https://www.charitynavigator.org/index.cfm?bay=content.view&cpid=6781

As always, Operation BBQ Relief has deployed to both hurricane-affected areas in the U.S. to cook and serve free hot meals. I've followed them for years, and they are as legitimate as it gets. Strictly volunteer-driven, these folks have served over two million BBQ dinners since their launch in 2011. They often need volunteers and always need monetary donations.

Let's keep everyone in our thoughts.

Wednesday, October 10, 2018

Since I haven't mentioned it yet - Hurricane Michael



The barometric pressure is trying its best to wipe me out, and it's not even here yet. The lower the pressure, the worse the symptoms, and Michael is a catastrophic category 4 storm. As you can see in this boring, short video, I'll be on the far west side, so I'm ok. I think my biggest challenge will be my muscles and my head (which is screaming...my ears are killing me) while the storm is doing its thing on the coastline. Once it passes, I'll recover and share information on helping our neighbors to the east who will undoubtedly see their lives change.

The best place for hurricane updates is of course the NHC. They're also on FB and Twitter.

Talk to you soon.

Sunday, October 7, 2018

Health Assessment 10/7/18

I took a health assessment on one of those blood pressure, heart rate, body mass index machines in August of last year, and I remember being pretty upset over the results.

Today, I went to the same machine and did it again. The results are better now.


My weight and BMI were lower, my blood pressure was great, and my heart rate was a little better than usual. I still need improvement, obviously, but I'll never be "normal". Anyone who expects that of me is not living in reality. I frequently have to remind myself of that fact, and I will remind others if necessary. My doctors haven't really brought up my weight other than general documentation stating that I'm "slightly overweight". That's fine. The assessment's #1 tip on the right side of the screen is the same as it was last time - mental health should be addressed. Since I'm honest in answering their questions, that was no surprise. I have PTSD, anxiety, sleep disorders galore, and dealing with my failed physical health has been no easy task. Nor has being forced to exist for the rest of my life in gov't housing on SSI.

I found a low-income counseling center, and I plan to apply for financial aid next year. I don't have any money whatsoever to invest in it right now, and probably won't for a while. I know I need to take care of my mental health, and I will do what I can when I can.

As for my wrecked body, I'm at a loss at this point. I'm battling systemic disease every day, but I'm weak, exhausted, and in terrible pain. I feel like I'm losing the war, so I guess I'm going to fight until I drop dead. I don't know. What's the alternative?

"Keep Calm and Carry On" is a lot easier said than done, but I'm trying.

Sunday, September 30, 2018

Housing update, a little bit of artwork, and a lot of family

I'm back in my apartment full-time again, but I'm still having problems. I've put myself on a waiting list for smoke-free housing not very far from my nieces. Moving will be a logistical nightmare, considering my major medical needs and lack of medical care in Louisiana, but I don't know what choice I have at this point. I haven't been able to find housing where I really need to be, which is Mississippi. If I could figure out how to move back there, my doctors in Jackson would be my primary physicians, and life would possibly be a little less difficult. Unfortunately, Mississippi doesn't want more poor people moving there, so they make relocation from out-of-state almost impossible. I was on a waiting list on the Mississippi coast for years, and they continued to push me down the list until the chances of ever getting into housing there were nearly zero. In-state residents needing housing take priority, and there's no arguing with that. It may be a year or longer before there is an opening in Louisiana, so I'm stuck in my current apartment for a pretty long while. In the meantime, I hope something significantly changes for the better. It's the only hope I have.

I've continued my non-credit drawing course, and worked on a few independent projects as well. Here are a couple of them:

Full contrast ink design of Satine from Moulin Rouge
It was about a nine hour project.


30 minute gestural study of a Francisco de Goya
etching from his bullfighting series

More art will be shared soon on the other blog.

My older brother got married, and the wedding was perfect. This is the only photo I have of myself with my sibling tribe and their spouses and kids. Just missing my nephew Asher, and of course our deceased brother Max. Look how big the girls (Sadie, Zoey, and Jo) have gotten! Valerie too, who is graduating from U of Alabama soon. Funny that my cane is photobombing at the bottom of the pic.

I'm still waiting for a copy of the wedding pictures, so here's some stupid selfie nonsense. :P





I could barely move by the end of the night, but I survived.
I've spent a lot of time in bed since then.

MDA clinic in Jackson is Tuesday, so I'll blog again soon.

Sunday, September 16, 2018

September 2018 (with pictures)

Welcome back, readers.

The drawing course is going well, I guess. I'm learning some things.
Sitting up in a desk chair hasn't been working out (muscle weakness)
so here's my current setup in the living room. Lots of pillows involved.
I'm considering just moving it all to my bed, but I'm trying not to.
As I mentioned last month, drawings will be posted on the art blog.

(Edit Note: This was uploaded before problems with my apartment arose,
and I decided to leave it on the blog. I'll resume drawing when I am able.)


My minimalism efforts have continued in September.

I finally tackled my worst (scary!) closet.
Trust me, it was absolutely embarrassing.
I feel much better now that it looks like this.

I use a disturbing amount of plastic,
but it goes to the recycling center.




I spent some time back at the apartment
deep cleaning the kitchen and dining room.
It was painful, and didn't improve the issue with
the neighbor's cigarette smoke, but I'm glad I did it.
(HKPP was also an issue. My butt was kicked for days.)


This made me laugh out loud.

I've been living on soup, chocolate milk, frozen coffee, and noodle dishes for quite a while now, but sometimes I still try to tolerate solid food. I stayed at my brother and sister in law's house a lot since I couldn't breathe well at home, and I ate far too much real food there. It was good, but I paid the price for sure. I can't stay on the Gastroparesis diet forever and be able to use my muscles to their potential (they are much weaker than average already), so I have to keep trying.

I've made some Asian and South American dishes recently, but this month, I returned to my obsession with Italy. Years ago, I studied Italian cuisine using online courses and blogs written by regular people in Italy that I used a translator to read. If you really want to learn the way people cook in other countries, that's the best way to do it (as opposed to American TV cooks who pretend they're from another country...don't even get me started). Anyway, you know by now that I'm neither a Chef nor a Photographer, but I'm going to share a few pics.



Caprese is normally a salad, but I turned it into a sandwich. :-)

Squee! This was my best shrimp scampi yet!



Wow at the work that went into this Amatriciana,
but it turned out perfectly. I only wish all of those
tomatoes had resulted in more than 1 2/3 cups of it.


As I said, none of the solid food is going that well. I'm doubled over with my stomach daily when I consume more than soft, liquidy things. Occasionally, it's bad enough to bring out the phenergan. I don't take it often (in addition to its usual side effects, it wipes me out with HKPP). My conditions are downright unbearable at times, and I don't think I'll ever accept my limitations. I'm trying to stay afloat both physically and mentally, but it's not easy. Some days are better than others.

I wish I could run a food charity...a soup kitchen or food truck or something. It's a completely irrational and impossible idea for someone with my disability, but I think about it all the time. I'm depressed that I don't do enough to make a difference. As the office manager recently told me, I can't stand people but I love humanity. Funny, but he's absolutely right. I struggle greatly with the state of the world and the people in it. I get so angry, but then I just feel sad because there's nothing I can do to change things for the better - for myself or anyone else.

I'll always wonder what I could have accomplished had my conditions been properly treated in my younger years. I'll never know, and I realize there is no sense in mulling over it.

Monday, September 10, 2018

Another week in the absolute fiasco that is my life

September 3rd: I was at the grocery store across the street from my apartment loading my car. An obviously drug-impaired young man followed me to my car and tried to get in it. I locked the door quickly so he couldn't get in, and he threatened to shoot me. Unfortunately, the windows were down. He reached for the lock inside to try to unlock it, I yelled at him, and he threatened to shoot me again; specifically, "You 'bout to get blowed!" while reaching toward his cargo pants pocket.

I yelled at him again, loud enough that other people in the parking lot could hear me, and he ran off. I went home, called the police to report it, attached my pepper spray to my key chain, put a knife in my car, and ordered a taser. I hate weapons, but this is the third time I've been threatened in this god-forsaken town so I clearly need to arm myself in an attempt to stay safe. I'll probably never use any of it. As you can see, I'm more likely to argue myself dead than actually harm anyone.

September 4/5: Tropical Storm Gordon made landfall in my area. I lost power for a little over 12 hours, but was otherwise fine.

September 7-ish: I started having trouble breathing in the front half of my apartment. I was already having trouble breathing outside of it (for quite a while) because all of my neighbors smoke in our shared breezeway. Neighbors from other buildings also come over and sit in the breezeway and smoke. I am both allergic to it and a serious risk of respiratory failure due to Periodic Paralysis, so this is a double whammy of misery for me. Now I can't breathe inside my own damn apartment (for the second time...if you've been here long enough, you know this happened when I first moved in also). It seems that the new neighbor (that I share a wall with) is smoking indoors, and it is somehow making its way into my space.

Today the 10th was the worst day yet, as I was sick from the smell to the point that I was trying to catch my breath, lost my voice (it's still gone 8 hours later), and can't breathe out of my nose at all. My throat is thick and feels like it's a millimeter wide. I contemplated the ER. I reported it to management, who has ignored the nationwide smoking ban in public housing, and refused to acknowledge it. I let them know I was aware of the ban, sobbed on the picnic table outside the office, packed my bag, and came over to my older brother's house, where I am now. His house is also an allergen problem, but I had to get away from the apartment. 

After talking with a couple of organizations, I think I'm trapped in an unfortunate loophole that allows property owners to ignore certain regulations. However, I am under a HUD subsidy and it is HUD's job to provide safe housing for people with disabilities, so meeting with them is the next step. Their office is five hours north, and I'm not optimistic that I'll receive the help I need without an attorney. I have experience as a federal paralegal, so that is an advantage, but my illnesses are going to make this situation much, much harder. I'm not even supposed to be under any stress.

I wish I had never been born.

How has your week been?

Friday, August 31, 2018

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.

Wednesday, August 29, 2018

August 2018, In Pictures


I went to see Dr. B, who decided to test a new med.
It's going somewhat ok, but I am just...blah. So tired.

It spite of that, I managed to accomplish some things this month.
I recycled a back seat full of glass, plastic, and paper.
The nearest recycling center is pretty nice.
Another artist happened to be there at the same time.
She claimed my still life props, so that worked out nicely.

I have a clean and organized living room again. Woohoo!
I have a difficult time sitting up at a desk, but I'm trying.
I'm mostly still propped up on pillows in bed or on the couch.

Next up, the kitchen! I've been working on it all week.
I have more things going to the recycling center next month.
I'm saying goodbye to old glassware and other random items.
I'm pretty happy with the result. Minimalism is happening!


How adorable is my Christmas owl mug?! See you soon, little cutie!

This is still a lot of stuff, but a few of these items were gifts, so I'll never part with them.

The pantry is coming along. That pretty box holds open containers of noodles.
The Thai neighbors gave me more habaneros from their garden!

I vacuum-sealed them for the freezer, since it'll take a while to use them all.


I returned to the park on Portersville Bay for a few photos.


I scored a fresh red snapper filet, so I made fish stew and ceviche!

And last weekend, I made enough Ramen for an army, ha! It was for my vegan gaming group.


Pandemic Legacy (Season 2)
I mostly watched, as I was tired and couldn't really sit up long enough to participate. I'm glad I was able to at least be there for a little while and share the veggie ramen I had wanted to make. I had to avoid the beans and legumes myself, but it turned out pretty tasty! Hopefully in the future, I'll feel like hanging out with my friends a little longer.

I've been watching drawing lectures, and I'll sit up and draw along with the professor as my muscles allow. I will update my art blog as I go along. I received a lot of feedback from friends about my mild concern with figure drawing (long story, just know that very little about my life has been normal), and I appreciated it very much. It turned out to not be a big deal at all, and in a rare moment of bravery, I even drew myself in the nude (work I will neeeevvver share, so don't worry about that). I feel like I have learned a lot with this professor in a short period of time, and I look forward to more drawing practice. On an unrelated note, I have an acrylic painting in progress also.

In between all of that? Meltdowns, thanks to Periodic Paralysis, chronic pain, digestive disease, and sleep deprivation, but I'm managing it all as best as I can one day at a time.

Hurricane Katrina changed my life 13 years ago today. I've spent some time reminiscing, but it's not something I've wanted to dwell on. Keep rebuilding, Gulf Coast. We may have a love-hate relationship, but I'm proud of ya.

There have been a ton of hits on the blog this year. Thanks for reading my mess, y'all. Enjoy the rest of your summer. Or winter, if you're on the southern side of this spinning ball of insanity.

XO