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

Thursday, December 31, 2020

We are finally at the end of this unbelievable year.

My yearly goals in review is upon me.

I'm not ready. Was ANYBODY ready for this year?

Absolutely not.

A worldwide pandemic. Who would have ever guessed?

At least we have a vaccine now, and although it's going to be a long road ahead, it is a glimmer of hope.

We have to hold tight to that four letter word. Hope is everything.

I'm not looking forward to recalling my goals, but here we go:


1. Weight has not changed.
2. I did read a few more books, but not as many as planned.
3. I had to cut therapy because COVID put the brakes on in-person counseling. I did, however, connect with some people online, and I have learned a lot. I hope to continue to, and I do plan to return to the counseling center in 2021 (I suppose I'll do this after vaccination).
4. Memrise is a great app. Try it! I am not bilingual, and I don't know if I will ever be, but I know dozens more words than I used to, mostly in Spanish. I'll pursue it further at a later date.
5. I took long breaks, but I did some work on this blog that you may not notice. And I made a new header, which I figure you do notice. I'm simplifying as much as I can, and I think it's going pretty well. I do intend to blog in 2021.
6. God knows I tried. If you are a regular reader, you know I changed my mind multiple times about dating, and eventually decided it's a "no." And it definitely is. I don't have the health for that nonsense. Maybe someday I will. I care about my friends, and I hope we can try to build our relationships again after the pandemic is no longer a concern.
7. Yeah, this needs work.

So that's that.

Should I even make a list for 2021?

1. Survive.

That's it. That's the list.
Unconventional for me, perhaps, but I believe it's appropriate for what has been an incredibly bizarre chapter in my otherwise bland existence. At the present time, surviving is enough.

I want you to survive too. Thanks for reading my blog, and I'll see you in 2021. x

Wednesday, December 30, 2020

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.

Monday, December 28, 2020

A Hard Christmas

 


I overdid it on the bread-baking a little bit.
It was enjoyed, though.




MawMaw's couch, which I spend a great deal of time on, has a new cover.




This white chocolate sunflower walnut bark was awesome.



I tried my best to be in the Christmas spirit.

In reality, I was broken. I had learned of someone's death from COVID at midnight, and didn't sleep. I was in severe pain, risking my health, and feeling very much like I should have stayed in bed. I didn't last long. I ate a plate of food, gave my gifts, and went home. I cried most of the time I was awake.

The days leading up to Christmas were more pleasant. I was still in severe pain, because I always am. That never changes. But, I was able to participate in several online santa exchanges, sending gifts to a few people, and receiving a few gifts in return. I'm not going to bother with pictures. I'm tired. I also made a lot of candy and desserts, and passed them around to family and friends, as usual.

Kayla sent a grocery gift card. John sent an online Nintendo game subscription. I have snacks, and I may never leave my home again now that I'll have unlimited access to Super Mario Bros.

I also received an unexpected $100 from a page on Twitter that trolls the psychotic new site Parler. I laugh at some of the stuff they post, although most of it is very troubling, as it is extremist nationalism. I do not have an account there, mind you, I am only following the Tweeter that makes fun of Parler. At any rate, that person, who asks to remain anonymous, sent me and a dozen others $100, which was very kind, and incredibly needed since I had $15.00 in the bank at that moment. I also received some $$$ from a dear friend after Christmas, which has also been a tremendous help. I appreciate that at times when I am struggling, people appear in my life who lift me up, whether financially or otherwise. I don't take that for granted, and I do everything I can to pay it forward as often as I am able to.

This hasn't been the worst Christmas by any stretch. I've been through way worse, including bedbound illness, homelessness, and more. I don't want to think about it or talk about it, but I recall enough to maintain the perspective that I am currently safe and surviving, albeit, in poor physical condition.

I am grateful, and I will keep trying.

Sunday, December 13, 2020

Art, Decor and more

I created a new header for the blog. It's simple, but gets the point across just fine, I think. I appreciate those who have helped me test out the blog at various times, and for being here reading my mess after all of these years. 


I don't usually decorate much for Christmas, but a young man on Askfm talked me into it. :-) Speaking of Ask, I'm at nearly 9000 answers if you haven't been there lately. It's a wild place. I try not to take it too seriously, but it passes the time while I'm down with my conditions and unable to sleep.



Acrylic pouring has become a hobby. I can't do it very often, because it is taxing on my body, but when I can, I try to make the best of it. Here are three sketch journals for my friend Tony's kids.





My beloved Monopoly scrub shirt from 2007 is too small, so I turned it into an apron, sort of. I should learn how to sew, but I don't really feel like I have the motor skills, and I never have.


My kitchen is as adorable as an old government apartment kitchen can be. I'm trying, folks. Can you believe I still (!!!) don't have a refrigerator? I understand that COVID and hurricanes have resulted in backorder, but it's pretty frustrating. Oh well, I've been through worse. Keep on and carry on.

Saturday, December 12, 2020

Friend Material

Dating and relationships. Blahhhhh. It's not for me, folks. At least, not at this time. I closed the relationship profile, and don't really want to talk about it. No matter how much therapy I put myself through or how many articles I read or how much I don't want to always be alone, I know in my heart I will always be better friend material than intimate partner by a thousand miles. My health is poor, and as I have always said on this blog, I am not comfortable dragging someone into my personal hell. I fight multiple life-threatening conditions daily and never get a break from it. I am tired tired tired. Everything hurts. There is too much ableism in the world, and it will never be overcome in my lifetime. My sense of not belonging here is deep and unmovable, so my priority must remain striving to stay alive and true to myself. That's the bottom line.

I have lovely people in my life who I am grateful to call friends.

My heart belongs to charity, and I am always trying to do something to make living seem worth it. There is so much pain, both literally and figuratively, and I am constantly looking for a way to ease it for others, and as a result, myself.

There isn't a thing I can do about my physical pain. I'm stuck with it. There is no hope there. So if I can do something to ease any other kind of pain in the world, the resolvable kind, I suppose, that is what I will do.

What I need is personal, self-fulfilling purpose. I was so ruined by religion, that it was drilled into my head that my purpose revolved around a man; his lead and his will, that somehow was supposed to benefit me because I was serving him? Gross. And sadly, that narrative still tries to barge in even though I know better now. 

I absolutely refuse. It is not who I am. It is not who I want to be ever again.

I'm not opposed to having a companion someday, when I am feeling better and doing well enough to never, ever need him to do a damn thing for me. If I am with someone, it is because I want to be there and always have the means to walk away if I feel unsafe, disrespected, or unhappy. That's not where I am in life, and it didn't take long for me to realize it after presenting the notion. It felt wrong.

That's it. That's the blog.

If you are my friend, I thank you.

Wednesday, December 2, 2020

Shocked

My next door neighbor came home from work, told his wife he liked his job, and dropped dead. I can’t believe it.

I’m at a loss for words.

Sunday, November 15, 2020

Alex Trebek


I get that he lived a long, good life,
but this hurt, and Cancer sucks.

Sunday, November 8, 2020

Historic Win

 


My relief is beyond words.


Monday, November 2, 2020

Meeting J.J.

As I mentioned earlier this year, my newest nephew was born quite early. Thankfully, he is doing fine and thriving with his sisters in their new home in West Virginia. I am grateful that I was able to meet him before the big move.


I'm a proud Aunt.


What a sweet little dude.


He found the baby on camera. Ha! :-)


I sure love him. I'm relieved that all is well. It's going to be a long time before I can visit - I suspect a year or two. I don't have the health to travel at this time, anyway. I've never been on a plane, but will consider it. Once COVID is completely under control, it will be discussed.


Sunday, November 1, 2020

The first of several catch-up posts (with pics)


After over a year hiatus, I joined NaNoWriMo for 2020! I still don't like what they did to the website, and others don't either. It appears that many register there, then move on to Discord for groups. I am not on Discord, but found a nice group on Facebook for sprinting. And yes, I am a rebel as usual. I will be revising my children's novel. I've thought about those kids a lot, so it's time to continue their story. It's one of the major things I want to complete before I keel over. The way things have been going health-wise, I feel like I better work on it.




I finally caught 23 and Me at 50% off, and jumped on the opportunity. I am interested in knowing what they think about my health risks and food sensitivities, considering how wrecked I am, so I am waiting for the kit to arrive. I will keep you posted, of course, on the results.


upi dot com


The North Central Gulf Coast has been wrecked by hurricanes this year. I was affected by two of them: Sally and Zeta. Both did a fair amount of damage, although my apartment is fine with the exception of losing the fridge and freezer. I'm living out of an ice chest until management addresses it, which will hopefully (!) happen in the coming week.

Drying parts of the floor

The fridge compressor died, resulting in an impressive leak. I'm thankful I didn't experience actually flooding. It was a mistake to restock the fridge and freezer after Sally. Everything (except the bread below) had to be thrown out. I have lost an awful lot of food this storm season.

Bread dough is the only thing I saved from the freezer.
It's not exactly pretty, but it is yummy, so I'm documenting it.

I put a short video of my flooded area on Facebook (friends only). I've chosen not to sightsee or post damage images anymore. Some folks down here are going to need help, as they also did after Hurricane Sally. As always, the best ways to do that is through disaster and food relief orgs like Salvation Army, Red Cross, Direct Relief, and Feeding America. For my immediate area, Feeding America is probably the best option, but that is a matter of opinion. Of course, there is a lot of work to do and help needed all over the central coast. This hurricane season has been record-breaking, and an exhausting mess.

For those who have asked how to help me, my Venmo is "ugottafriend" and my PayPal is KBosarge. Thank you, but please never make any financial sacrifices for my benefit. A couple of friends have helped already, and I am surviving.



Halloween was a bust, but I went next door for this cute donut.


I will end this post here.
I'll continue catching up in a day or two.
Thanks for still being here.


Abandonment Sucks.

I've been through it more than once. And although I realize a blog is inanimate, I'm sorry I did it anyway. My reasons range from exhaustion to hurricanes to chronic illness to simply not knowing what to say anymore. I do have plenty to catch up on here, if I am to continue to talk about my life in such detail, but I wasn't sure for a while if I wanted to do that. I asked my friends on social media what they preferred to read on a blog, and they reminded me that I write as an outlet for my own benefit, and that I should keep doing so. In other words, write whatever I want, whenever I want. It's me, myself, and I up in here, just like my daily life at home. This happens to be my online home.

So I guess I'll blog on. It has been 12 years now since I started this one. I used to be on other sites, which are now either dead (shoutout to Yahoo Geocities and that sketchy site Diaryland!) or seemingly trudging through cement (LiveJournal anyone?) and I shut it all down. Blogger has been a solid choice in spite of having to kill the comment section due to spam and trolls. I don't like the new interface they've set up behind the scenes, and they are dangerously close to getting their butts cancelled, however, I will stay until I decide to finally drag myself kicking and screaming to WordPress. I think I'll take a free tutorial and give it a test drive sometime soon. At any rate, ugottafriend dot com is still the place to find me if you're not on Instagram, FakeBook, or the Tweeter hellsite.

(I insist I'm not fake on Facebook, but like most folks, I take issue with some of the happenings there.)

So, here I am, like something my non-existent cat dragged in, saying hi.



Hi. :-)



Sunday, October 25, 2020

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.



 

Wednesday, September 30, 2020

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.


Sunday, September 20, 2020

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.


Saturday, August 29, 2020

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:

Free meals in affected areas:

News reports with many ways to help:

Thanks for reading.

Friday, August 28, 2020

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.


Wednesday, August 26, 2020

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.


Tuesday, August 18, 2020

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.

Sunday, August 9, 2020

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.

Saturday, July 25, 2020

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.