Halloween 2019, and a tiny cosplay tutorial.

Costuming is simply wearing a costume, but cosplaying is wearing a costume AND roleplaying the character, no matter where you are.

As follows:

"What a marvelous evening at the World's Fair!
I'm delighted my co-pilot and I decided to attend."

"Hmm, there certainly are a lot of people interested in our tethered airship!"

"Just a moment! What are those fiends doing to my co-pilot?"

"Ohhh no you don't, you nasty pirates!"

"Someone is stealing the airship! I must rescue my co-pilot. TIME to go!"

I only had four trick-or-treaters, sadly, but I enjoyed dressing up this year and making an attempt in spite of my ailing. I've had soup and crackers, and I'm ready for pajamas! I'll take the unclaimed snacks over to the homeless shelter tomorrow.

"To the airship! Destination: My Bed."

Life Lately, Part One

Medium Chunky describes me pretty well, but you didn’t hear that from me.

I guess I’m going to attempt to bring the blog up to date with a few photos and thoughts.

I attended a health fair by my apartment. Former Surgeon General Regina Benjamin, Senator Doug Jones, and others were on site and held a panel to talk about several things that affect our rural, impoverished town. I’m thankful to know Senator Jones cares about the situations that real, regular people face. He advocates for equality and human rights above all else, and that’s pretty hard to come by in Alabama. I’m glad I voted for him, and I hope he stays. I managed to speak up during the panel and ask Dr. Benjamin two questions, so maybe I’m not dead yet. I just need to get out more. Of course, that’s difficult to do when I can barely leave my bed or bathroom some days.

The gastroparesis is being managed, albeit, not that well. I never know from one day to the next if I’m going to be able to tolerate and successfully digest a food. I’m not willing to exist on soup broth and pudding forever, and my muscles let me know regularly that they’re dying for real food (mainly protein), so I keep trying. It’s a rocky road, and some days are better than others. I'm always in pain.

I’m well-stocked on fluids, thanks to friends who tackled my Amazon wish list. This month, I stocked my freezer with seafood again. It looks like I may be pescetarian for the long haul, at least partially. The stuffed crab and catfish filets in the above photo are out - both were so bad they produced a gag reflex. I’m doing ok with the rest in moderation. I’m still living primarily on soft foods and liquids. Alas, I remain “Medium Chunky” in spite of it all. My current goal is to lose 15 lbs, but that seems to always be my goal. We’ll see what the scale says when I go to the doctor in November.

I began looking for free foreign language classes online, and ended up signing up for a philosophy course, open online through Coursera. It was Intro to Philosophy via University of Edinburgh. It was the typical video lectures and tests, until the last module. Time Travel! And not just time travel, time travel taught by a Steampunk Professor named Alasdair. I smiled the whole time.

It was the only memorable part of the course, to be honest. The app is a bit wonky and the quizzes don't always load right. It was a little frustrating. I finished the course early, and deleted the app from my phone.

My positive distraction of the year has been Pokemon GO. I started it at the end of March, and I'm already level 38 (of the last level, 40). I didn't used to play games on my phone, but this has been an adventure. I'm in a group with thousands of players, all adults, of all ages, who live in my region. I don't get to participate like others do, due to my health, but when I can make a go (pun intended) of it, I seem to do ok. My niece Jo and a couple of siblings are playing as well, so it's fun to send gifts to each other. And it's free, which is the important part. I am hoping to achieve level 40 at the one-year mark, by March 2020.

I have more to blog about, and I'll do that soon. I need sleep.

World Mental Health Day 2019

It’s World Mental Health Day, and I want to help reduce stigma by bringing awareness.

I have PTSD, Anxiety, and Suicidal Ideation. I didn’t cause or ask for it. Nobody is immune to these conditions.

I’m seeking care through counseling, education, medication, and positive distractions. It’s still hard, and every day is a challenge.

I’m not here for sympathy or to be “fixed”, although I hope to continue to beat these monsters. What I equally want to beat is ignorance. We need to judge less and learn more. These are medical conditions, and patients should be treated as such - with dignity and empathy.

Hope is everything. Be a part of it. Mental health is as valid and vital as physical health, and it affects all of us.

Heartbreak, Refocus, and More

Indy 500 the rolling walker
photobombs me in the car.

Hey folks. How ya doing?

I’m spending less time these days reading social media news feeds and more time learning about how my body works so I can keep trying to fight all of the conditions that are wrecking me. I’m tired, but I don’t give up easily. I’m looking for books about channelopathies, neurology, and nephrology, if anyone can point me in a good direction on that. Preferably, I need reading material that I don’t have to pay for, since I’m poor. I've sadly had to give up on going to renal and muscular dystrophy clinics because I can't afford it any longer. Much of this issue involves my dad's abandonment of his promise to my mother on her deathbed, which, according to him, was to make sure I continued to seek medical care. She did tell me she regretted not doing so herself as she was dying. He in turn told her he would set money aside for my out-of-state medical care, and he instructed me to keep scheduling appointments in Jackson, which he planned to cover. All of that changed when he met the young bank teller/wannabe musician. I digress. It's his money and his life. I'm staying out of it.

I appreciate how kind my doctors were to me, and I will miss Dr. C especially. He inspired me, and I hope we can be friends someday in another life or something (preferably this one, if I get a choice). I'm devastated about losing more doctors, and it's also pretty scary. I've got one left, at the low-income clinic by my apartment. Thankfully, Dr. B is still on this crazy train, for now.

Speaking of the apartment, I am still attempting to minimize it. I donated collectibles and clothing to the local Make-A-Wish thrift store, including my kick scooter (which I can no longer balance on, of course), so I hope it finds a great home. I'm sorting through my closets and finally dealing with a lot of things I had stored away. Some of it hurts my heart, but I’m determined to own a lot less when I move out of this apartment someday. I’ll post photos soon of some things I’ve found that are fun or interesting or free for a local to claim.

I haven’t found the stamina yet, but I am planning to sort the pantry and freezer by expiration date, so that should be fun. The fridge is still nothing but liquids, applesauce, and pudding, so it’s already good to go. My digestive system and my diet are still a mess to deal with, and it looks like a permanent issue.

I’m very sick, but I’m going to become a capable, organized domestic queen if it kills me, ha. It very well might, but I need to do this. For me alone.

I've been given a lot of love and well wishes through all of this drama, and I am grateful. I do want to resume blogging on a more regular basis. Eventually, I’d like to give Facebook Live a go. We'll see what happens.

How do I clear the wreckage?

I'm always analyzing. I feel like I spend the majority of every day trying to find ways to do good and be good. Death is on my mind often, and I worry about not making a worthy impact before I go. I have existed what seems like too long, yet I fear my life has been lived in vain. I say frequently that it doesn't mean anything. I'm just another face in the crowd, and when I leave, nothing will change, and I probably shouldn't be here in the first place because it's just...pointless.

But lately, I've been thinking more about what I can do to help others while also saving myself. I carry the weight of the world even though I already know I'll never be able to do enough. I've concluded that I should probably find one thing to devote to. However, when I try to focus on one thing, other things present themselves and I feel like I need to start focusing on those things, thus my endless list of overwhelming to-dos and worries that may very well be contributing to my mental and physical decline.

I have low-functioning anxiety, I think. I become so undone that I crash and burn, resulting in being an ineffective human altogether. I'm not referring to my physical disability entirely, but generally speaking, my inability to cope with circumstances around me which I am unable to improve. Serious things like kids in cages, animal abuse, poverty, domestic violence, etc.

I believe my reactions to terrible acts, words, and situations are absolutely justified, and I don't think it's wrong to get angry or challenge and question those who are apathetic or supportive of the crises we see in front of us. I simply need to find a way to manage my despair so that I can remain collected enough to be effective, somehow.

That's why I'm in therapy. One of the reasons, anyway. There is a great deal to address, from childhood to present day, so it's not easy and this isn't going to be resolved overnight. I wish there was something - a conversation, a mission, or even a person - that exists in my heart as the key to positive and permanent change. I just can't figure out how to unlock that door or flip the switch in my head that makes me believe that I belong here, have a purpose, and possess the ability and wisdom to achieve a life worth living in a world worth being a part of. I'm stuck floating in mid-air with a failing engine and bad gears and no place to safely land.

In observing people who are seemingly successful, it appears they have found one big important thing to pour their lives into. I have failed to do that, because I look around me and it's all important. And all of these things are not just important, but urgent. And I derail and shut down.

What's the solution?

How do I clear the wreckage in my soul?

How do I build a human who functions, matters, and makes a difference?

Very Bad Week In The Gastro Department

The Gastroparesis episode of doom fell upon me Saturday morning. It was my worst bout yet, having briefly lost consciousness while violently vomiting. I came to, cleaned myself and the floor, changed clothes, called 911, and gagged into a bag throughout the entire half-hour ride to the hospital. I was treated for dehydration and nausea, and monitored for 8 hours. Everyone from the paramedics to the ER physician were fantastic. My cousin picked me up, took me to get scripts filled, and got me home.

I’m on a liquid diet indefinitely, and Zofran all week. I’m still having severe stomach cramps and bowel problems. It has been almost a week, and I haven’t been able to progress past clear liquids. I’ve lost six pounds since Saturday. I followed up at the local clinic, and I am to continue the clear fluids until my digestive tract stops trying to purge everything I put in it. Broths, gelatin, Saltines, and electrolyte drinks are all I’m taking in. I am optimistic that I will be able to upgrade to applesauce, pudding, and tomato soup soon. As you can see in the photo, I already had those stocked. The rest of my diet needs are currently arriving or en route from Amazon thanks to some wonderful friends who sent everything I asked for on my recovery wish list (it’s in the sidebar if that matters). I’m so grateful for the help.

This is a terrible way to learn one’s limitations, but I’m learning. This is all happening because I had the audacity to eat three meals in a 25-hour period. How dare I, right? I must accept that I cannot do what normal people do, even if I think I feel up to the challenge. My broken body is not designed to operate by the world’s standards. I’m required to create my own to survive.

I’m glad I didn’t die barfing in my bathroom. I know I could have, in fact, I grew up with someone who died exactly like this. It is a scary thought, and not at all how I intend to exit this world. I’ll keep learning and fighting as best as I can.

Hurricane Dorian Relief

Credit: Forbes

My friend Kelly over at Live Life Logically has compiled a list of ways to help those affected by Hurricane Dorian. You can find it here. Thanks Kelly!

I’ve been wanting to blog.

But I’ve been too overwhelmed to type it all out.

My (step)dad, who was the person I was closest to, has disowned me over a young woman who is scamming him to obtain all of his assets. I went to authorities, and they sympathized heavily but cannot proceed without him having a mental evaluation, which nobody can force him to do. So the investigation is at a standstill until he proves vulnerability or she proves herself to be a crook. On top of that, he has cancer and doesn’t seem to be seeking the support he needs for that, although he could be now. We haven’t spoken since May. This has felt very much like a death, and it has been difficult to move past. I feel officially alone now, if that makes sense.

I’m a roller coaster of emotions from worry and exhaustion to anger and despair. Being sick and in severe pain with no hope of escape only adds fuel to the fire. I know I need to get out of my own head, but I need to get out of this body and this apartment and these circumstances as well. There’s no way to do that, so I simply wish for this to be over. I’m tired of existing this way.

My soc security is under review, and even though it is blatantly obvious that I remain disabled, and have gotten worse in some ways since my declaration, my stress level is maximized because I don’t trust most people. Most people are ableist. Most people don’t give a damn about me or what happens to me. I have no reason to rest easy, especially under the current prejudiced and incompetent administration. 

I can only rely on my doctors to have hopefully documented within the last 24 months that I am pathetic. As you know if you’ve been reading long enough, my experience with doctors doing what they’re supposed to do has been abysmal since my youth. The few exceptions are who saved me, but they are out of my life now, so I don’t know what my medical records look like. I can only hope and pray the current documentation is satisfactory. My body is unstable and losing SS/Medicaid would end my life. My life isn’t much worth living - nobody knows that more than I do - but this isn’t the way I want to go. I’m still trying to carry on.

And I will keep trying, until someone or something else stops me.

I hardly know where to begin.

If you’ve followed my social media long enough, you know some things have happened to me recently that I haven’t been able to fully disclose. This is my blog, so I am willing to give more information here so that there is a record. I reserve the right to hide or remove this post if it becomes necessary.

I was raised in an unconventional home. One of the relatives who raised me through my teen years is still living, and he considered me his daughter. He has special needs, and has a difficult time grasping the concept of things such as age, time frames, and laws. I have a good reason for bringing that up. Read on.

I was listed as his next of kin, so that when he passes, I would be the first notified and be able to secure the house and handle all of his finances and end-of-life matters (something I’m more than qualified to do, being a former paralegal). He wrote a Will and filed with his attorney. I haven’t seen it, and haven’t asked to see it, but I knew through our conversations that my brother and I would receive an inheritance. My portion would have to go into a Trust account run by my brother to take care of whichever needs soc. security doesn’t cover for the remainder of my life, as well as my eventual burial in our family cemetery.

Then that relative met a new teller at his bank, a college-aged woman who he thought was beautiful. He being the fearless almost-70-year-old he is, made it known to her that he thought so. The ethical thing to do, at least in my mind, is to simply say thanks for the compliment and move on. She didn’t do that. She contacted him outside of business, and began a “relationship" over the phone. She began sending him angelic Snapchat photos, which he framed and displayed. He doesn’t know how to use a computer, and doesn’t have a clue what Snapchat is, so the fact that this beautiful woman was sparkling and wearing a fake floral halo in these photos awed him.

He started writing love letters. The ethical thing to do, at least in my mind, is to let this elderly man know that he had the wrong idea, and kindly back off. She didn’t do that. She began sending him gifts. One gift, which I saw with my own eyes, was a blanket that was custom made with not only photos of herself, but one of his love letters to her. This young woman photocopied the love letter and created a collage, and now he wraps himself in a blanket of his own love letter to the 20+ year old bank teller. You get the picture. She manipulated him into falling for her.

And fall he did.

He said he was behind on bills and took out a loan at their bank. Shortly after, he called to inform me that he has changed everything. His life insurance. His Will. Even his next of kin. It’s all her now. His new “best friend” is now Executor of his Will, partial Beneficiary, and next of kin. He told me that in the event of his death, I would no longer be the first one informed. She will, and it is up to her to call his entire family, including his children, to inform us of his passing. He also stated that we’re not allowed in his house until the 20 year old bank teller gives it to the beneficiary. If that’s not bizarre enough, here’s the kicker: she doesn’t know us, and we don’t know her. We’ve never met, and she has never made any effort to meet anyone in his family, nor has he attempted to introduce her to any of us. The only reason I know her name at all is because I pried it out of him after months of him not wanting to reveal that he loved a woman young enough to be his granddaughter. At any rate, she is now Executor, and according to him, she promised to “pay for everything”, take care of his final wishes, and give my brother and me our share. He actually trusts this 20 year old bank teller to do that - pay for his house, his funeral, handle his cremated remains, designate the house to the person he chose, and distribute buttloads of money to the rest of his family, who she has never met and never even tried. Because she “promised”, and she’s his “most beautiful precious treasure”, he believes her.

Meanwhile, she’s on social media living the single life and looking for a rich man to treat her like a Queen. No shit. Her own public Facebook page goes on and on about it. No mention of him. They have no physical relationship, so I assume that to her, it’s not really real. Yet she is taking advantage of his entire life and even his death.

Believe it or not, that’s not all.

He has been diagnosed with cancer. He called me shortly after to say he’s changing the Will again. He’s making this young woman the sole Beneficiary. He gave her personal details about my soc. security case, and she supposedly promised him that she would give me "half of the money, in cash, and not tell soc. security”.

I exploded. I yelled at him that it was not OK to give her my SS information, and that trying to make me take that much money without reporting it is fraud and that I would NEVER agree to it. He became furious and yelled “I TRUST HER!” He couldn’t care less that it was illegal. He’ll be dead, so what does it matter to him? He threw my brother and me under the bus to give a pretty young thing control over everything, believed that she would give up the house and give me tens of thousands of $$$ illegally, and he actually expected me to be OK with this. I told him to remove me from the Will, and he said he will give his money to whoever he wants, and I said it won’t be me because I don’t break the law for anybody. He gave me an ultimatum to commit fraud to receive an inheritance, I refused, and he’s angry! Not half as angry as I am, "Dad".

I had to send a cease and desist letter to the man who raised me. It’s one of the saddest things I’ve ever done. He is ordered to remove me from the Will completely, never give confidential information about me to her or anyone else again, destroy all paperwork with my SS# on it, and give anything from the house intended for me to my brother. For my own protection, I am disclaiming my inheritance and will no longer have contact with him.

So that’s it. My only chance of receiving acceptable care in the future and covering my end-of-life expenses is gone.

I don’t care about his money. If I was trying to exploit the man, I wouldn’t be living rock bottom in poverty in public housing. I’ve proven that I am not a taker, and I have no problem ending this nightmare by exiting his life altogether and leaving him with his fake girlfriend. My future is dim, but I choose integrity. I always have, and I always will.

It’s devastating, though, truly. I exist in a world where I couldn’t trust my own parents, and that’s a very hard thing to accept. I appreciate your prayers and best wishes as I deal with this incredible stress. As if I didn’t have enough of that already.

I have some sort of update.

I spoke with social security yesterday about end of life arrangements. What is allowed is a burial plot, up to $1500 in life insurance, and up to $1500 in a funeral trust savings. I called my family cemetery for the price of a plot, which also happened to be $1500. I will have to find a life insurance company that allows such a small policy. Otherwise, I'm looking at $3000 that I am allowed to raise for this purpose.

The reason I am doing this is because I have no parents or children, and my siblings are not financially capable of burying me. It is important to me that I achieve some kind of dignity in death, and I have been worried about how to help my next of kin do this when neither of us have any money. So I talked with social security, and this is the allowance they gave to me in writing.

When I figure out how to set up the right kind of fundraiser, I will post it here.

I am hoping and praying that I will not incur any legal expenses, but a close relative has put me in a catastrophic situation that I am having to address with his attorney and mine. Some of you already know what's been done to me, and I appreciate your input. I need your best vibes...send some sanity my way, please. This is a nightmare, especially on top of serious illness and everything else I'm already dealing with.

Thank you always for caring about me.

Happy Sunday

The weather has triggered every muscle in my body. I’m in severe pain in places I didn’t remember having. I did make it to the store to pick up a small lunch, but the rest of the day will be spent curled up on the couch with tea and ibuprofen.

A young lady told me Happy Mother’s Day earlier. I smiled and said “Thank you very much!” with as much enthusiasm as I could push out. My policy is that there’s no good reason to get defensive when someone is being kind. She didn’t harm me. It’s no different than saying Merry Christmas or Happy Halloween or any other holiday to someone who doesn’t celebrate it. I feel that the best thing to do is be considerate, say thank you, and move on. So that’s what I do.

My life is very different from what I planned. I’m sure nobody plans to be chronically ill and disabled. Even though I grew up wanting to be a parent, and I cared for a lot of great kids in my younger years, it’s honestly a relief that I didn’t pass down my DNA. I’m glad for those who happily chose to take that journey, and they have my love and well wishes, but I envy no one. That doesn’t mean I accept my circumstances, but that I endure them to the best of my ability in both body and mind. It’s the only thing I can do, so I will try to do it right.

Good day to all.

2019 Twitter Art Exhibit

I'm always honored to be a part of Twitter Art Exhibit. This year, my postcard is in Edinburgh, Scotland to benefit Art In Healthcare. The reception was live on Periscope, so I was able to see the ribbon cutting from my bed, which was great. I hope my postcard sells.

Art Lately

In spite of the severe pain I've been struggling with, I've tried to keep myself distracted by working on some art projects. It hasn't been easy. A few of them were challenging, and being on my feet even for those few minutes had me audibly aching, nauseated, and in tears at times. This along with muscle weakness is the reason I can't do this but every once in a while. People don't realize how much physical labor goes into these things, and it's impossible for someone like me to operate my muscles on a set schedule.

At any rate, my new acrylic abstracts are as follows:

I've learned acrylic pouring, and I'm loving the effects caused by various mediums I use, especially alcohol. Some artists use vodka, but I don't drink, so I keep it cheap and simple with rubbing alcohol, which produces the same results.

All of those should be clickable for larger viewing, but please don't download. (Side note: I can see downloads, including your IP address. I do track that.)

I appreciate all of the nice comments I've received about my work. I can't do much anymore, but I'm slowly using up all of the supplies I accumulated back in the day when I was able to be more active. I'll try to do more later this year.

Time To Become Less Public

Hi readers,

I wrote this for April 1st, but realized that is April Fool's Day, so I am publishing it earlier. That way, you know I'm not kidding around.

I'm fed up with the news about our current administration going after disabled people who have an online presence. Apparently, selfies are forbidden, and people with legit disabilities can't be seen in public, smiling, or displaying any kind of normalcy whatsoever. As he has since the beginning of his campaign, Trump is using Hitler's playbook to target people he is prejudiced against.

Until things change for the smarter, this blog and all social media will be on lockdown with the exception of certain days which I will decide on at a later date. If you are not subscribed to posts here or elsewhere, feel free to do that. Follow on Twitter or send a friend request on Instagram if you wish, but I will be on lockdown there also. If you're already on the list, you'll still see my posts there. As for ugottafriend.com, you will be redirected to a gateway page to my medical blog, where people will, if they choose, be subjected to all of the ugly details of my life with debilitating systemic disease. This change will happen next week.

The point is that I am legitimately disabled, but I'm not going to risk dying or something worse because a complete stranger in D.C. decides I'm less of a person than they are and wants to punish me for their terrible perspective. These people who are currently in power are stupid, and that's not my problem, and I'm not going to let them make it my problem.

If I lose all of my readers, so be it. I've had to start over and redefine myself so many times, I'm desensitized to the notion at this point. Nothing matters anymore. My friends will reach out when they want to, and I'll probably be there.

The medical blog will remain open in stone-hard ugly detail. I hope all of the geniuses who love to hate disabled people enjoy my posts about blood tests, bodily fluids, and bowel movements. Kiss my crippled ass.

I didn't ask for this life. I don't deserve prejudice.

References:
1. https://talkpoverty.org/2019/03/28/trump-selfies-dangerous-disabled-people/
2. https://www.engadget.com/2019/03/11/trump-administration-may-monitor-social-media-to-catch-disabilit/
3. https://medium.com/s/story/the-trump-administration-wants-to-snoop-on-disabled-americans-f2fcaae78ad3
4. https://www.nytimes.com/2019/03/10/us/politics/social-security-disability-trump-facebook.html
5. https://fibro-larious.tumblr.com/post/156386537322/fibro-larious-the-physician-who-was-hired-to

The remainder of March in pictures

Rare day in contact lenses

I like to try new sodas if I run across them.
I think this one was at Publix Supermarket.

I bought a granny gown! It's comfy.
(I was originally looking for a bathrobe.)

I attended a book sale to benefit the library.
Five bucks for the whole lot! I love a good deal.

I hosted St. Patrick's Day festivities at my apartment.
My brother, sis in law, and her mother joined me for dinner.
Unfortunately, I forgot to take photos of the dinner, ha!
But here's the bread. AHHHH THE BREAD!

Here's a closeup. :-)

My stepdad took me to lunch on my birthday.
Everything on this plate is diet-forbidden except the mushrooms.
I was bad. So, so bad.

So, so, so bad. :-)

I could knock somebody out with this thing, ha.
I ran out of Old Bay, so I bought a larger container.
All cooks should have Old Bay in their pantry.

My brother gifted me with a Sam's Club membership so I could
start buying seafood, healthy snacks, and drinks in discount bulk.

I appreciate my stepdad for helping me out while I was on the walker in spite of his own physical troubles. He could use some well wishes. It's concerning.

And now, some food I made:

Bayley's West Indies Salad (Crab Ceviche)

Crunchy Chocolate Covered Strawberries

Crab Stuffed Mushrooms

Asian Shrimp Roll

Cajun Shrimp, Dirty Rice, Carrots

I'm about 75/25 pescetarian right now. Once I eat the last few meatballs from my freezer, and make a ham and cheese quiche, my kitchen will be fully pescetarian. I still try to digest other meats sometimes, but it's not going well. I'll keep trying, but I intend to eventually be 80/20 pescetarian, if not 90/10, for health reasons.

I never did write about internal medicine clinic. I'll get to that on the medical blog soon, and post the link here when I do. Renal clinic is also in 2 weeks.

Talk to you in April.

Thanks Bob (and everyone who wished me a nice day)

March update, and a little bit of February too.

Books read:

Complementary Approaches To Pain by NIH and NCCIH (quick summaries of alternative techniques such as acupuncture...not terribly useful in my opinion)

Women In Sports by Rachel Ignotofsky (good)

Women In Science by Rachel Ignotofsky (highly recommend)

The Gingerbread Girl by Stephen King (bad, lazy, not King quality, possibly ghost-written or either written on a day he was really bored)

Love Poems by Pablo Neruda (nice enough, a bit sexual at times, very Song of Solomon)

Books in Progress:

Stillllll working on Anam Cara. It's spiritually heavy, and it's going to take a while to get through. It's pretty, I will say that.

I started Learn French with Paul Noble. I seem to understand it well while I'm listening to it and speaking along, but I don't believe I would understand more than a few words if I visited France, or even the hometown of my 8x Great Grandfather in Quebec (that would be Montreal, yes, he was a founder and trustee). My brain is mush, but I'll continue studying to see if I can improve.

I have Beauty For Ashes by Joyce Myers in my possession, but I haven't made it through a chapter yet. I do intend to read it. If I can find it in eBook or audio form, I'm more likely to do this sooner (vision-impaired). For now, my local coffee shop let me borrow the hard copy.

Someone very kindly sent me three audiobooks on Amazon as a gift today. I will be reading all three as soon as possible, and will elaborate when I do.

Art Stuff:

Credit:
https://twitter.com/twitrartexhibit/status/1105397743634313217

The folks at Twitter Art Exhibit received my postcard (top middle) in Scotland! I was excited to see it among the others. The reception is in May, and I'll give more info when I know it.

I have other projects I want to work on, but I have been too weak and tired to do so. I'll update my art blog with work whenever I'm able to crank it out.

I'm done with the Bob Ross company. I haven't been able to teach since my disability, but I don't like seeing how they're handling business these days. It appears that instructors are being thrown under the bus, so to speak, and a lot of them are quite unhappy with the changes. Rightfully so. Instructors have invested thousands of dollars and an incredible amount of time into doing what they do, and they make the company a lot of money. Good luck to them all. I'm sad to be disabled, but I'm glad I'm not a part of this new drama. No thanks.

I still get questions and comments and get asked for favors sometimes. I no longer teach art, and I do not do commissions. I want people to stop asking or expecting this of me. I feel the need to throw that out there, because I'm not kidding. Find somebody else, preferably someone with consistent motor skills and the ability to follow a schedule. Seriously. I'm done.

Food:

I'm super frustrated with my multiple diets and their associated conditions. I will talk about it all in a separate post.

Misc:

I went to therapy and Internal Medicine. I'll have to make my visit with Dr. B a separate post. It was more eventful than expected. Coming up: the eye doctor who I have not seen in three years (he's great), and nephrology (he's great too).

My birthday is in 10 days, and I have zero plans. I do hope to raise $100 for Leukemia and Lymphoma Society, though. Feel free to check out my Facebook on how to help, if you're on there. You don't have to be my friend. It's public. :)

I'll ramble on about social media at a later date. I'm weary.

Systemic disease is a beast. It's not even 7 P.M. but I'm curled up in bed. That's become my normal again. Hopefully better days are ahead. Good night.

March is here already.

And I'm behind on my blogging. I didn't start the year out too well where that is concerned. There is so much to write about these days that I'm overwhelmed, and I end up not writing anything at all. Mostly, I want to improve upon my medical blog and genealogy blog, but I keep dragging my heels. I will eventually tackle the tasks.

I've been extremely tired and in a lot of pain, and pushing myself to the point of physically crashing. I'm struggling with achieving a reasonable balance in nearly every facet of my life, and while balance is something I will always strive for, what I only want to do at the moment is sleep.

I returned to counseling today, and it amounted to a rant session about my limitations and my inability to deal with peers who've crawled out of the woodwork to support the terrible current events that have taken place over the last two years. People I've grown up with, or are related to, or have been friends with for years are suddenly bigoted, and in some cases, cruel. That has been a difficult adjustment, and it has made me question how I ended up in their realm. Most of the answers are obvious: was born into the family, grew up in that town and went to such and such school, and share certain general interests. In other words, we were compatible by blood or proximity. In a few rare cases, people simply changed, or they always carried such views, but hid them until now because they feel more comfortable letting their ugly flag fly. As for what to do with them, there's no real answer. I've already cut my Facebook down by hundreds, and I've ditched the majority of the family. I've learned through studying minimalism that it's not just about stuff. It's about people too, and how they affect your quality of life. In math terms, you can ask yourself the question "Is this person adding, subtracting, multiplying, or dividing?" I've seen some people even make a written list. Remember the old slam books from junior high? They were terrible, but not completely unuseful. When struggling with someone's presence, weigh their pros and cons. It sounds like solid advice, but it's a whole lot easier said than done.

Back to my limitations, I've been doing what I always do, and that's push myself until my body crashes over and over again. I live in HUD housing, which has to be kept in acceptable condition, and there's nobody here to do that except me. Even if there was someone else living here, I wouldn't be sitting around expecting them to do everything. I have to be able to operate my body. I have standards for my living conditions in addition to that, and I try my best to achieve it for the sake of my own sanity. I've never been diagnosed with OCD, and I don't think I qualify, but if the diagnosis ever arose, I would do nothing more than shrug my shoulders and say "Fine with me. At least my body isn't gross and my apartment doesn't look like garbage." And that would most likely be the end of the conversation, because it's my body and my apartment, so thank you, that is all.

My counselor suggested I find a local service for people with disabilities that offers to help me with cleaning and shopping. Except there isn't one. I live rural. None of the grocery stores that I shop at deliver here. There's also no restaurant delivery (not even Pizza Hut for heaven's sake), and the only people who offer to clean are locals who are unlicensed and looking for extra money. I'm not desperate enough to let a stranger in here around my medications and inherited collectibles (the latter will eventually find new homes, but that's another story for another time). I can't afford maid service. Family is not an option.

So there's little 'ol frustrated me with the frustrated muscles. I'm doing what I can, and overdoing it often, and paying the price. There's nothing normal about living with systemic disease, and it could be a lot worse, but it's not something that I can bring myself to accept, and that's where my head comes into this. I know how to acknowledge that this is my life. I don't have a choice. But to accept it is a step that I can't seem to reach. I don't know if I ever will.

I have no solutions, but I will keep trying to make it day by day, and continue to do the best I can with what I've been given.

The wild west is not in the west.

It's apparently here in the deep south.

The new neighbors are frequently fighting. Not just yelling; actually beating one another against the wall. I heard "help me" once, and called the police. The police suggest I tell the office. The office has stated in their monthly condescending newsletter that any problem is not their problem after office hours. Call the police. So nobody cares but me. And the truth is, I wouldn't care if they weren't disturbing me, because she keeps letting him back into the apartment knowing they're going to fight. She kicks him out, then lets him right back in a few hours or a day or two later. Over and over and over.

After a long night of hearing their fighting from my bedroom, I left to go sit at the only place open in my town, Waffle House. I made the mistake of placing an order, which I paid for and had to wait for as a fight began a few feet away from me. An obviously-impaired woman started yelling at the top of her lungs and harassing people. The cook, who was also yelled at, eventually told her to leave him alone so he could cook for "this nice lady", who was me. That wasn't helpful, as that only directed her attention to me. I was so fed up at that point, I snapped "Yes, I would like my food so I can leave!" So naturally, the woman started threatening me. "You done f'ed up bitch", etc etc. Her boyfriend told her to stop, and said to me "I'm trying to save you but she's right, you done f'ed up." Everyone in the restaurant was at attention at that point, looking pretty concerned. " I announced calmly that she was the one acting like a fool, that I was armed, and that I wasn't going to let her hurt anybody in there. At that, she walked out and took her loud, obnoxious mouth into the parking lot where she continued to yell and threaten nobody in particular, while her friends assured the waitress that they would take care of her bill.

First of all, let me state that I should have left immediately when the woman started in spite of having placed an order. The company would have lived with losing that seven bucks, and they are entirely at fault for allowing that woman to stay and make customers feel unsafe.

Secondly, I don't own a gun and never will. Being "armed" means I have mace in my pocket and a stun gun in my car. The stun gun took me a year to talk myself into, only after my life was directly threatened in the grocery store parking lot, and it was free. If I ever have to use it, I will be traumatized for life. I've never hurt anyone, and don't plan to.

But you can't let the idiots in this town know that. You only get respect when you make yourself clear that you have the upper hand. Otherwise, their "bad ass" is going to "f you up". That is the mentality in this town. Aggression wins.

I hate every minute of it, and I hate almost everyone here. Literal Nazis, who simultaneously claim to serve Jesus, run the local pizza shop. Good luck going to the store without an addict asking for money or trying to carjack you. I once carried groceries into my apartment from the car and a man high on drugs jumped in front of me in my own breezeway and asked if I was "ready to do it". He only backed down because the women he was with yelled at him to leave me alone. Everybody wants to beat the hell out of everybody for no good reason. The cops might as well set up a station in this neighborhood to save some time.

My French ancestors founded this city, and it is documented history that they were good, respectable people. When the Spanish took over the area, they granted this land to the family because they liked them. And now it has become this. It's disheartening, and I am drained in every way.

Rant over. I just wanted to make clear what happened the other night, since I mentioned it on Twitter. I'll obviously never step foot in WH again, but the fact that I have to make that kind of decision at all is a disgrace. I hate aggression, and I'll do whatever I can to halt or at least avoid it, but a public defender I am not. So don't be surprised if I'm murdered someday for simply trying to protect myself or someone else in this god-forsaken town.

February So Far

Hello folks, I'm back. :-) Thanks for coming back, too.

I went on hiatus for reasons I will not state, but it was needed and I will say that February has gone a little better this year than last. If you've been here long enough, you know that last February involved the myotonic episode of doom which had me yelling in pain, throwing up, and unable to move. Bad times.

I have been feeling on the verge of these episodes once again, but so far I've been able to prevent them with Magnesium. That mineral comes with its own set of problems, but I've found it to be absolutely necessary to my function. Of course, I'm still on a tremendous amount of potassium, as well as kidney and heart drugs. I'll update the medical blog in the near future. I've been dragging my heels where that's concerned.

I remained on Facebook and Twitter most of the month, and didn't take a break from Instagram at all. IG seems easiest to deal with these days, and I'm learning how to tolerate the occasional buffoonery that I run into there (fun fact: Instagram is NOT A DATING SITE. Leave me alone! Rawr!), ha! It has been fine for the most part, and I appreciate the likes and nice comments I receive.

The biggest news is that I started counseling. What should have been an hour and a half intro consult turned into three hours. We both agreed there is a lot to address. I maintained my composure with the exception of mentioning kids in cages on the border, and dealing with ableism. Those subjects brought me to tears, but I managed to unload a lot of my life story without a problem in that short period of time. There's plenty more to talk about. While I am still having dark moments, and it was hard to bring up a lot of the things I've been through, I'm glad I decided to start this journey. My counselor seems kind, she's my age, and we agree on a lot of things politically-speaking, so she can relate to my frustration concerning that. We'll see how she handles the rest of my turbulent life, but so far, this has been a good decision. I have complete freedom in choosing if and when to return, and I plan to do that in March.

I hope if anyone is hesitating to seek counsel that you will choose to take that first step. I am on a low-income sliding scale that is reasonable even for someone with as little money as I have. Friends have been helpful too, and I appreciate them so much. It's good to know I don't have to deal with my brain alone anymore. I don't regret speaking out about how I was feeling, even if some people are judging me (who cares what they think, really)!

My photos are horrible, but I'm going to share anyway, as I do.

I tackled the storage room (this is a 2nd bedroom...I am overhoused as I've stated in the past). I can see the floor again, I swept, mopped, organized...yay.

Which wiped me out with muscle weakness. Boo.

I'm having more episodes lately for a variety of reasons.

Weather fluctuations are always a factor, if nothing else.

I discovered Murphy Oil Soap and it is my new BFF.

(You should have seen that range hood beforehand. Yuck.)

Due to Gastroparesis, I have decided to switch back to a mostly pescetarian diet. I didn't tolerate the other meats well at all, and things began going downhill again. I'm a plump woman, but nobody needs to be losing 23 pounds in 21 days like I did last year, including me. I do want to lose weight, but it will be done the right way or not at all. That's how I roll. The haters can deal with it.

(I was unfriended over this on Facebook by someone with body image issues. Sorry I'm not extreme enough for you. But actually not sorry. Peace.)

Anyway, I've stocked up on seafood, which is thankfully affordable here.

And I made my way to World Market to pick up a Clearly Canadian mineral water. Almost an hour later, I left with all of this. I usually hate shopping, but I can't resist World Market's food section. Thanks to my stepdad for covering the cost of all of this loveliness. My only lamentation was they had no Inca Kola.

Those chocolate bars are 100% slave-free, and I'm glad they had them in stock. I've followed Tony's on social media and know they're doing good. The bars are huge and will take me weeks to eat because I only consume 2-3 squares per day. It's totally worth it. I'll consider it an early birthday gift, I guess.

Pics of my occasional cooking shenanigans are on Instagram.

That's all for now, I suppose, but I'll be back by the end of the month.

Love to all.