Hope for Malisa

I will be back very soon with multiple backdated updates. Until then, please think of my sweet friend and blog reader Malisa who is in critical care. These conditions we battle are so cruel and unfair. My tears and prayers are with her, her partner David, and their 11 year old daughter at this time.

 

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.

Hurricane Sally and Me

 

I know this is a lousy update, but I’m just going to leave it here for now. I am exhausted. Talk to you soon.

15 Years Since Katrina, and Laura Relief Info

Every time I leave my apartment, I see evidence of Hurricane Katrina right in front of my face in the form of a rusted metal sign that used to say Sonic Drive-In. Now, it simply says the word “Closed”, and has remained that way for 15 years.

Mom experienced Camille in ‘69 and talked about it the rest of her life. Ask anyone who loses everything overnight, and they will tell you that feeling stays. Despite moving on, Katrina has never truly left me.

And at this moment, there are people in Texas and Louisiana who are wearing that unwanted badge. Let’s help them if we can.

Heaven knows they came to our aid even when others failed to.

I won’t forget. I couldn’t if I tried.

Worldwide disaster relief, including Hurricane Laura:

https://www.directrelief.org/

Free meals in affected areas:

https://wck.org/

https://operationbbqrelief.org/

News reports with many ways to help:

https://www.nytimes.com/2020/08/27/us/hurricane-laura-how-to-help.html

https://www.wlox.com/2020/08/27/list-louisiana-relief-donation-locations/

Thanks for reading.

T-Shirts to End Systemic Racism

END SYSTEMIC RACISM: https://www.ebay.com/sch/ugottafriend/m.html

I am selling shirts, fulfilled by Printful, Inc., with all profits going to Color of Change.

I've already sold a few. Here's a screenshot of the latest donation.

Thanks for considering.

I will post Hurricane Laura relief updates next.

Hurricane Laura

My baby nephew just returned home a few hours ago from an unexpected surgery. He's in pain, but otherwise ok. Sadly he is going to get this storm, as are all of my nieces.

I’m in the wonky circle on the right where the squiggly white lines are. My family is in the circle on the left. So think about them, please.

Wishing everyone in the path of this catastrophe the best possible outcome.

Stay tuned for relief information.

100 Years Ago

timetoast.com

Many women gained voting rights 100 years ago, but that wasn’t reality for minorities. Native Americans were given voting rights between 1924-1948 depending on the state. Prior to that, some Native men could vote, but appallingly was determined only by their willingness to leave their tribe and become a U.S. citizen.

Chinese immigrant citizens, both men and women, wouldn’t be allowed to vote until the 40s.

But this article is about black women. As great as white suffragists were for white women, they discriminated against black women in spite of black women fighting for the rights of all women. After the 19th Amendment passed, black women continued to be prevented from voting in many states (mostly Southern) until the anti-discrimination law passed in 1965, a full 45 years later.

The issue is still not over for those living in poor and rural conditions with reduced access to their polling station. I see it first hand here in public housing, where a lot of my neighbors can’t drive or have no vehicle, there is no taxi service, and they probably couldn’t afford the taxi anyway. They can walk or roll in their wheelchairs to the grocery across the street, but the polls are miles away. Classism, Racism, Sexism, and Ableism are real and oppressive.

Exhausting and Unpredictable (a stream of consciousness via phone)

The way my body is “functioning” right now is up at 4AM, breakfast at 5 or 6, then my body crashes and I have to go back to bed until somewhere between 10 and 1. Then up for lunch, if I don’t skip it, and a drive (if I can), and whatever errands I have to run (tomorrow will be busy, for example) or shopping or whatever. Then my body either crashes again, or I’m able to stay up and make or buy dinner. I wash the dishes and my body is always done after that. I have a hard time sitting upright without above-average support. I also spend way more time in the restroom than the average person, which is today’s TMI. And at some point, I play Pokemon GO, take a shower or two, and socialize online, depending on my plans and abilities. This may sound like a schedule, but it could be completely different tomorrow or a week or a month from now.

Some people with disabilities can operate by a schedule. Some cannot. I am at the mercy of my conditions every minute of every day. I don’t get to do what I want when I want. I do what I can when I can. There’s a difference.

Plain living is exhausting and unpredictable. It’s not a fluke or a bad day; it’s my default state. Still, I keep trying, and insist that there is something I can offer the world, even if it is not the world of average human normalcy.

There is a lot of debate on social media about what to call the disability community. Disabled people. People with disabilities. I accept either one. I don’t expect the general public to magically know all of the right things to say and do; that’s what communication is for. “Ask and you shall receive,” if a cliche line helps.

But what everyone can know, without questioning, with full acknowledgement and respect, is that my world exists, and it matters, too.

Relationship Ramblings

(Some of this will be WAY too much information. Fair warning.)

I built a relationship profile recently. It's here. I shared it on Facebook first, and should have said "Friends only, please don't share." I didn't do that, and started getting messages and immediately regretted putting it out there. But that was just my awkwardness and anxiety. I truly appreciate that people care about me and want to help make my life better, so thank you. :-) I want to find more like-minded friends, and I eventually want to pursue more than that, but I don't know if there will ever be a "right" time, if that makes sense. It's one of those situations, I think, where people say "There's never a right time to do this, you just have to dive in and learn as you go." People say that about parenting a lot, but it seems to also apply here. 

Post-pandemic, of course. Nothing is happening overnight. I only want to talk about it for now.

Mentally speaking, I feel like I can manage, and may even do very well if I can implement all that I have learned through reading and cognitive therapy. This would require practice with someone who is on board with the same mindsets regarding how to operate in relationships. Communication is key. So that's challenge number one - finding a man who is compatible with my mind and my lifestyle.

Challenge number two, and it's the biggest one - physical. I talk about being disabled on social media sometimes, but what people who are new there must realize is that I'm not just physically limited, I'm actively ill with life-threatening conditions. My safety is priority #1. I have environmental neuromuscular paralytic triggers. Sometimes my digestive system doesn't function properly. My pain level is such that I have a difficult time being touched without a reaction. I would allow it, of course, but gentleness would be an important factor. They must also be willing to tolerate medical talk to some extent. I'm an explainer, so if I need to do something, or not do something, or change my mind about something, they're going to get an explanation for it. That explanation could be anything from "I'm too weak to climb those steps, sorry..." to "I can't come over, I'm on the verge of vomiting at the moment." And that will have to be accepted without complaint. A combination of empathy and light-heartedness would be an advantage, and we could agree upon dealing with my symptoms by talking in code words, if that helps. I don't have to be graphic about it; there are ways to get the point across, but consistent respectful communication would be a requirement. I am aware those men do exist, somewhere.

Challenge number three is sexual. (Exit this page NOW if you can't handle the topic.)

It has been 17 years, and having muscular dystrophy makes this a double issue. With an ideal person, my mind is willing, but my pelvic floor is not having this idea. I've been doing physical therapy (feel free to do your own research to your comfort level), with varying results over the last year or so. For a while, it went so badly, I began having panic attacks and had to put the dilators away. It hasn't been pleasant at all. I've resumed it this year, and while I'm still struggling, I don't believe it will be impossible. I am keeping in mind that the dilators are medical devices, are cold, hard plastic, and are not suppose to be fun. And believe me, they aren't. But I don't think my body is too far gone, and the only way to truly know is...practice sex. *cringe* Haha, it's ok to laugh. Patience and a sense of humor are going to be the tickets to getting through this. And if the traditional stuff doesn't work out, so be it. Intercourse is such a small part of intimacy. Don't faint, but there is more than one way to engage in sexual activity if needed. I'm sure you didn't know that, right? [/sarcasm]

Patience, patience, and more patience. And respect. And communication. And kind humor. And maturity. And cleanliness (good hygiene, please). And compromise. And open-mindedness. And safety. And gentleness. And absolute sobriety (I don't let drunk people into my life often, and never my bed). And consent. And more patience. None of these things are hard or unfair, in my opinion. I'll only have someone who agrees wholeheartedly with that.

Form an orderly line, gentlemen! Haha, don't worry, I am kidding.

To be honest, I've been talking to someone online (gasp! I know, I said I'd never) that I hope to meet IF he still wants to when COVID is no longer a serious risk. (If he doesn't, it's ok.) He has been thoughtful, and I've enjoyed our conversations. As I have stated in previous blog posts, I don't talk about specific relationship matters on my blog because I feel it crosses an invisible line. I am a cornucopia of boundaries, and that is one of them. Consent matters in all things.

So that's all I have to say about that.

Am I worth the trouble? I will say this: If you agree that this is "trouble", just go now and save us both the drama. My life has been different, and I am a different style of human as a result. I'm passionate about equality and being a good person. I'm loyal to those who treat me right. I don't want your material possessions. I'm thrifty. I have a silly sense of humor. I love learning. I hate fascism, injustice, and prejudice. I like to make people think. I'm a decent cook. I bring awareness. I'm a chronic trier. I speak my mind. I give great massages. You'll probably beat me in Mario Kart and I'll whip your butt in Jeopardy. :-) I want to add to your life, not take it away. If my challenges are seen as a burden on you, you're not for me to begin with. So don't bother, ok?

I know what I bring to the table. I'm not afraid to eat alone.

Good Trouble

May this world-changer rest in peace.

And may we continue to make good trouble in his honor and memory.

There's a lot going on

Yeah, it has been quite a while.

I am sorry.

This is probably going to be a series of posts. I'll start with family stuff.

My brother has not been in good shape, and he eventually had open heart surgery. He's still in the hospital, but will hopefully get to come home over the weekend. This is just the beginning in what we expect to be a long ordeal of medical interventions, but it's a relief that his blockages were found and dealt with before it was too late. Our genetic makeup is a bit of a nightmare, with a lot of odds against the two of us for various reasons. He is my only full-blooded brother and four years older than me. Hopefully he'll get his organs straightened out and live a long time. I definitely can't imagine him not being here. His wife is hanging in there. I appreciate those who've kept them in thought.

My new nephew J.J. is out of NICU and doing beautifully.

I still haven't been able to meet him. :( Hopefully soon.

My other nephew turned four.

He is the funniest, happiest kid.

The girls are all fine. All of their parents are buying new houses this year. Jo is learning how to cook. Zoey and Sadie are doting on their new tiny brother. It has been quite the adventure in 2020. 

I can't believe I have five nieces and nephews; six if I include the adult stepniece who is moving to Colorado at the end of this month. I'm grateful that, in spite of COVID-19, I was able to see Valerie and meet her boyfriend Dan before they moved away to start a new life together. I'm proud.

I'll be back with other updates shortly.

20 Challenges for 2020

In a recent self-analysis, I decided to make a list of things I can do to make my life better and/or more disciplined. I have a long way to go with most of them, but here's what I've done so far:

I read at least one article per day. These are often from Psychology Today, but I occasionally run across articles on other sites that are worth reading and sharing. I mostly post them on Twitter as retweets. The Psych nerd in me thrives on attempting to understand people's thoughts and actions, and of course it's most important to consider my own. I get very frustrated with stigma surrounding the human condition, and would like to see ableism and other misjudgments defeated in my lifetime. I won't hold my breath, but I will speak out or share a helpful post when I feel the need to. The goal is to educate, not attack, but Heaven knows I am a work in progress, and I need continued education too! Thanks for understanding, if you're willing to. Never stop learning, friends.

(I will always be devastated that I wasn't able to achieve my college and career goals as an Educational Psychologist. Just a side note.)

I am working on the blogs. Bear with me as changes are made. You may very well not notice a difference anyway.

I'm trying to accept that sleep is going to find me at unconventional times, due to the fact that I am always sick and my body does not operate by a schedule. I was diagnosed several years ago with chronic insomnia, central sleep apnea, and sleep deprivation. The CPAP did not work, so I'm existing the best I know how like this. It is HARD. True sleep deprivation is a nightmare, and it unfortunately not only affects my physical health, but it is detrimental to my mental health as well. It triggers anxiety and suicidal ideation, so needless to say, it can make life pretty difficult. I'm doing my best to make restful sleep my #1 priority, as I acknowledge that it is vital to my survival in multiple ways.

The back brace does help sometimes. I'm trying to remember to put it on more often.

I've learned approximately 25 words in Spanish, so I'm halfway to that goal.

I canceled my membership to the Circle I mentioned a while back. I was quickly overwhelmed with the content, ended up behind, and it grew so immensely that it became dramatic. People were complaining and challenging each other, attacking the Doc's posts, and I found myself getting defensive as well (but never rude). Eventually, she made a hyper-spiritual statement about grace that infuriated masses of members, and I immediately canceled. It truly was inappropriate...I wish she hadn't said it. She did end up deleting her statement, but the damage was done. I still follow the public posts, and I appreciate how much I learned in the eight months that I was involved. I was thanked for being a founding member, and encountered no opposition.

I look forward to returning to my local therapist whenever the pandemic ends (I never dumped her, just haven't gone because of COVID). I fully recognize the need to continue therapy, and I will elaborate on some of the things I've discovered and am dealing with in a future post.

I've got work to do to be the best version of myself, but I am determined.

Testing embedding in the new Blogger

I found a tutorial on how to do this on the new format of Blogger. Haley agrees with me that it's weird, but she showed how to embed, so now I'm trying it. :)

I'm sitting here with tears rolling down my face over this clip. I'm telling you, folks, if you have not watched Doctor Who before, but want to get a gist of the emotion it brings, this is the episode. I will watch it a thousand times and there will never be a time that I won't cry my eyes out.

Anyway, I'm glad someone is staying on top of how to use Blogger. Kudos to Haley for the help!

Figure drawing update (one)

It has been a while, hasn’t it? Sorry. I’ve been busier than usual, albeit, some of that involves sleeping as much as possible so that I can function enough to accomplish some things. Some of these things include striving to minimize my overwhelm, organizing my apartment, paperwork, family stuff, and everybody’s favorite stressor - social media. I’ve also read seemingly endless commentary about what’s happening in our country, and listening to Black voices, as I want to be the best ally I can be. As for my own life, I made a new to-do list in hopes of becoming more disciplined. I will share that list soon.

Art is frequently on the back burner, but I have created a few pieces this year, and have more in mind. For now, I have decided to say “to heck with taboo” and share some of the figures I’ve studied. I have more references in queue, so I’m far from done, but I've made a quick video of my figure album.

Warning: THIS IS NSFW. Since Blogger's format changed, I can't embed video. *eyeroll* You'll have to go to YouTube to watch it. As a rule, I always share my disclaimer that I'm not a pro, and I'm not trying to sell work. I took Fine Art courses, but Figure Drawing was not covered in community college. I'm self-taught, and these are only studies (rough drafts of various techniques), so don't expect them to look fancy.

https://youtu.be/ueqjcksQaF4

My table is covered in pencil shavings, haha. Sorry for the mess.

I do plan to renovate my art blog, and I will let you know when I do. To be honest, I really dislike the new Blogger, and I'm having trouble figuring it out. It'll get done, eventually.

Thanks for being here.

Rally for black lives - May 31, 2020

These photos and a couple of videos are on my Instagram @ ugottafriend. This is how it's done, folks. Masks on. Signs up. No violence. I took social distancing seriously, and only took one selfie with a man who asked. Otherwise, I stayed as out of the way as I could, but still visible. I was on a walker and couldn't march all the way to the police station, so I found a tree and planted myself under it to hold my sign as traffic passed by. After I left, a group started trouble, and police had to throw some gas to prevent that group from halting interstate traffic or causing an accident. Understandable, and not something I would have ever been involved in. Some punk broke a window on one of the police vehicles. It was dealt with. Nobody was hurt, and nearby businesses didn't experience anything out of the ordinary, to my knowledge. The march was escorted by the police department, with the mayor and the chief of police present and listening to protesters. I didn't personally encounter any disrespect. It was a completely positive experience for me, and I'm very glad I was able to be there.

I never unfriend people over politics - A Handy Guide

The Color of Change

I'm sure I don't have to say what this is about. If you're on my social media, you know how I feel about the murder of George Floyd and all other hate crimes. Here is my latest statement, just in case.

I'm so sick of seeing this in my country, and I'm a white southerner. Just try to imagine how people of color feel. It's 2020 and we're in a senseless race war, encouraged by a fascist government. How in the hell did this happen? I still can't fully wrap my brain around it.

Ben & Jerry's Ice Cream account on Twitter follows me. We've talked a little. They have spent years speaking out against systemic racism in this country, and if they suggest a non-profit, I listen.

They've partnered with Color of Change to help fight racial bias, and I wanted to make that known here. I've started following, and I'm paying attention to what's happening in my area. There is a peaceful protest planned on Sunday, and I hope to feel like attending (in a mask, from a distance).

We live in a society, and it is our duty as citizens to call out and extinguish injustice.

Thrive Is Efficient

I ordered on the 26th, and received it on the 28th. That's fast!

Everything looked great, except this jar of salsa.

I emailed Thrive the photo immediately, and I had my refund in half an hour. In addition to that, they emailed an apology, and credited my account an additional $10 for a future purchase.

While I'm disappointed about the salsa (salsa is my boyfriend, you know), it's not a big deal. The customer service at Thrive is outstanding, and I'm glad to be a new member.

That's all for now.

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.

Thrive Gives

I saw an ad for Thrive Market, and checked it out. It's non-perishable food and household products, plus a frozen seafood and meat option. Some of the products are sold at a discount in comparison to, say, Whole Foods or Publix. I did enough research to confirm that this is true. The downside is that there is a membership fee, like Costco or Sams, and it's $60 per year. To my benefit, they offer a program for potential customers in need called Thrive Gives. I figured if anybody qualifies, it's me (being both rural and poor, not to mention sick), so I applied and was approved within three days.

I placed my first order yesterday. Here are a few of the products I ordered:

I could not be happier that they have my soup base, ginger candy, Dolmas, and even my favorite cashew milk! That was the selling point for me most of all. I can tell you that those Dolmas cost a lot more at other stores, because I recently paid nearly double (!!) the price. Even the Gin Gins are cheaper at Thrive than the discount store I used to buy them at.

They gave me an additional 30% off select items, and they're telling me I saved $45.38. I happen to think it was more like $49, actually, based on the prices at my local stores. So that's pretty cool.

I like that they take PayPal. That's an easy and fast way to pay.

They have filters on their site that allow you to search by specialized diet. For example: Paleo, Keto, Gluten Free, FODMAP, etc. I thought that was nice. They also have their own brand of products like grocery stores do.

They were sold out of many, many things due to the pandemic. That is understandable. The only true complaint that I have is that their site lags pretty badly. At one point, I had to back out and start over because it just wouldn't cooperate. It's possible that they are experiencing high traffic (thus so many products being sold out), which would explain the lag issues. I'll see how things go next time.

At any rate, I wanted to give a short review and let people know that thrivemarket.com exists and they have a program for customers who are at-risk of not being able to buy healthy groceries. I am grateful they gave me a free membership, and I wanted to appreciate them publicly.

I was not compensated in any way for this review, as I never am for anything I promote here. They won't even know about this post unless they find it on their own, haha.

During a pandemic, staying away from grocery stores is ideal for someone as high risk as I am, needless to say. Three cheers for 4G internet (I don't even have Wi-Fi, folks, I did this all on my phone...which is actually my aunt and uncle's phone come to think of it. *deep breaths*).

I'll give an update when my order arrives. Maybe I'll do an unboxing video.