leopardwolf

[leopardwolf]

Mom I Love You Forever And Always

There's no easy way to say this.   Mom's gone.  She passed peacefully in her sleep Saturday morning.  I am thankful she is no longer suffering or hurting.  Her soul is free and she is at peace. I am eternally thankful to the home health and the hospice staff, nurses, aids, and everyone else who helped me take care of mom these last few months, with such caring consideration and respect, and treated us like their own family.  Words cannot express how much it helped and meant to us both. Mom was grateful to know that total strangers all over the world cared so much for her. We wanted everyone who reads this  ( whether you ever commented or couldn't find the right words but wished the best with all your heart ) to know how thankful she was, and I want you to know how thankful I am. I am exhausted and hurting from crying. I am crushed, even though I knew it would happen. I am just in a worse place than I was already, now that she's gone.  Forgive me if I get upset or short or anything at any point in the near future. Just very overwhelmed right now. I will have more information about memorials and arrangements in the next few days. I will share everything when it is all set up and I know more.  Mom wished to be cremated and have a celebration of life rather than a funeral. She wanted for us to remember the happy times only. I am hurting deeply because of everything happening now, that happened with mom and family drama, and everything that happened with all the loss last year and things that happened before that, which I kept mostly to myself. I have kept myself detached and numb to everything for a long time because I had no choice, and that is not healthy.  That ends now. I just need tons of positive support and the least amount of negativity in all things as possible. Thank you to everyone for your continued love and support through these long months and for your thoughts and prayers during this very difficult time.

[leopardwolf]

Mom Medical Update

Wanted to give everyone an update on how mom is doing. She had her surgery back in the beginning of December. It ended up being almost 12hrs long and went well.

The surgeons had to do a lot more than expected. Since it was such a long surgery on the abdominal region, they decided to wait to remove the affected lymph nodes later, in a second surgery after more chemo treatment.

Mom stayed in the hospital for the beginning of recovery and things were relatively okay.  She has since been moved to a long term care facility. There have been some issues with certain things happening there, so I had to light more fires to address said issues.

The whole situation during my mother's treatment has left me pretty angry with local medical professionals not doing their jobs. The only ones who I can sing praises for are the surgeons and their immediate staff, and a handful of nurses along the way.  The rest have been horrid.

Mom is in good spirits overall, just tired and resting a lot, which is to be expected.  It's going to be a lengthy recovery process that is going to require ongoing care. So far everything looks okay.  We just have to keep hoping and praying it stays that way.

My mom and I send the deepest thanks for all of you who have offered your love and support, prayers, and well wishes during this difficult time.  Mom was surprised and humbled to know so many people across the US and in other countries all over the world were thinking of her and praying for healing and speedy recovery.

Keep those prayer circles going, and positive thoughts and healing energy flowing!

Warm wishes, light, and love to all of you.  Stay safe out there.

[leopardwolf]

Fuck Cancer, Fuck Inadequate Medical Care

  I got angry and lit fires at the hospital last week. The hospital originally planned to just release mom once again after barely doing the minimum to stabilize her and not give any additional aftercare. Just go home and resume what you were doing.  She had only just barely started eating solid food again and they still had her on IV fluids.  I expressed concern saying this is exactly what happened the last time after her ICU incident, the hospital let her stay a few days and then decided she was "okay enough" to go home even though they had not addressed the issues that led to her potassium drop.... her uncontrolled ( even on meds ) pain and nausea.  So I told them, even with me here now supervising her and trying to get her to stay on top it, she could not keep anything down, and within days was right back where she had been. I told them I was worried that happening this close to scheduled surgery, would mean she would not be able to have the surgery... and the surgeon made it very clear because they will have 4 docs working on this, this was the only slot they all had for months.  The hospitalist actually tried to justify it and argue medically speaking, she was technically stable and they had no reason to keep her.... I shut him down. Seriously? She is a cancer patient doing very badly and malnourished, you know she is having major surgery next week, and you are just saying "Oh, go home and if it happens again, just come back!" instead of proactively giving us any options to keep her stable until the surgery?  I said there has to be something you can do, or someone can. He admitted his hands were tied and said he would speak to his supervisor and see what they could do.  I spoke with the supervisor and she admitted it was a bad situation and just the nature of disease this bad....I said that isn't good enough, there has to be something we can do, if you won't keep her in the hospital. Even if I had to drive her to more appointments, already an issue for us since they are in the middle of nowhere. She said maybe there was, if we could get IV fluids at home, and went to set that up.  I thanked her for thinking outside the box to do so. While waiting, I had called and left a message for mom's surgeon's nurse to call back. When I told her what was going on, she agreed it was not a good situation to lead up to major surgery. Mom could hardly keep anything down, even simple liquids, and as soon as the dehydration kicks in, it gets worse which makes dehydration worse and turns into a nasty chain cycle that needed to be broken so she didn't end up hospitalized and unable to have the surgery.  The nurse spoke with the surgeon and explained the situation, and he agreed with my reasoning that it was too risky even with home IV fluids, and felt mom would be better off if they could monitor and get her where she needed to be for surgery. So he didn't hesitate to suggest we bring her in and admit her to the main hospital so he could help personally oversee her care.  I am soooooo thankful they actually listened and did not just trying to shrug it off like the hospital in Slidell did, twice.  That is unacceptable. The surgeon ordered new CT scans and other things, and of course found that her nutrition levels were real bad.  They found there is some sort of blockage in the small intestine, that is likely what is causing her to be so sick and not be able to keep food down.  Based on his experience, there is a chance it is from the cancer spreading, but he can't be certain till he goes in to see what the tissue is.  The lymph nodes that were already effected are enlarged, and it looks like a 3rd is now effected. Some of the affected lymph nodes cannot be removed.  We talked with palliative care to discuss options. Having surgery will give her extra time, provided there are no complications, and once the stuff is out of her and they clear the blockage they would probably put in a feeding tube. There is a chance after that and if she heals well they can try chemo again, and as long as she does not have another allergic reaction to it, they will see if it helps. So there is some slim hope. The whole problem is that she was allergic to the main chemo drugs they use to treat this type of cancer, and the idiot chemo oncologist kept her thinking it was okay to wait and try another and another, instead of explaining to her how serious it already was and they should have surgeried her to begin with to remove it all, and then done more chemo, not the other way around.  The surgeon does not want to promise this will cure it, because he can't remove it all and there might be microscopic spread elsewhere. So we have to hope chemo will help destroy the rest after surgery. This sort of travesty of advanced medical care happens everywhere, far too frequently, within healthcare systems in well developed countries and in facilities that have more than enough financial resources and technology to do it right, but choose not to. Big corp hospitals and big pharma have not truly been about curing people for a long time. Afterall, they get more money by making you a long term "customer" so you have to keep coming back for expensive treatments.  Greed for more money that leads to innocent people like my mother suffering. You have to strongly advocate and fight for your healthcare rights to be sure you get the best care you can, and be educated about your conditions and situation so you can fight that fight, or know someone who can on your behalf.  You also have to get lucky enough to find those special diamonds among the lumps of coal in these medical systems, the ones who are not in these fields just because of the money or forced into it by their families - the doctors, nurses, and staff that actually give a shit and want to help save lives and make a genuine difference and do what is right for the patient. Mom has surgery tomorrow morning, and is booked for a 9 hour slot. It is a pretty major surgery and will have an extended recovery time. She is determined to fight this with everything she has.  We need to give her all the laughs and happy things we can right now. Prayers and meditation for channeling healing energy. Many friends have already started prayer circles for her. Please feel free to join in. The more the merrier and stronger the energy!  I will make another update after the surgery, when we know more.  Mom and I send our love and thank you all for your love and support during this difficult time.

[leopardwolf]

Family Medical Updates

I'm not sure where to even begin with how this year has run our family, and everyone I know, through the wringer, repeatedly.  We're trying to make the best of it all and take things one day at a time. Haven't had the heart to write about most of it beyond what I already have.  But I know my family and friends are worried, so I wanted to reach out while I had time and half the brains to write an update.  Love and thanks to those of you who have reached out to check on us. After having problems for over a year, Mike went in months ago for a simple surgery procedure and ended up having complications from it. The complications led to some bad and very dangerous stuff that required an ER visit and us getting very angry at some doctors, and led to him having another surgery, and needing at least one more, depending on results of the most recent procedure. They finally decided he likely has Crohns, and have started treatment for it. My mother is not doing well either.  She spent several days in ICU on IV drip, needed a transfusion, and stayed in the hospital a few more days after. She has been going through various treatments for stage 3 colon cancer for over a year now.  She was having trouble getting the care she needed and not telling me. When I found out how bad it really was I insisted on driving down to help. I came to stay at the farm property to visit her and grandma about a month ago, and have been here helping take care of them. I took mom to see a surgeon and finally made some progress. She needs some pretty extensive surgery now. The head surgeon needs to coordinate 3 other doctors of different specialties to do it. Earliest they can do it is Dec 7th. Trying to find somewhere safe and sterile/clean for us to stay for a few months after mom's surgery, so she can recover without risk of infection or complications. If anyone near Slidell has a clean place with modern conveniences to rent, or knows someone trustworthy who does, please contact me with the details. We are in a rural area without a reliable internet connection, so I will keep checking back as I can. My email leopardwolf@gmail.com is probably the best method to reach me right now.  Some wilderness and creative adventures are being documented for Patreon/Twitch while I am here, since I am not able to stream. Hope everyone is staying safe and doing as well as can be. Much love to all of you!

[leopardwolf]

Wasabi Crossed Over

A bright new star shines in the sky.  Mr. Wawa ( Wasabi ) crossed the Rainbow Bridge. He was 20 years old.  He lived a very long, happy life.  Fluffy soft and cuddles, unending purrs.  Soft as a cloud.  Always waahhh-ing and talking.  Singing us the song of his people for some food and yums.  He was the most patient and tolerant cat I have ever known. Best stray rescue and foster failure I ever could have asked for.

Any of you who have known me any amount of time, know that he meant the world to me. I love all my animals, but my cats are my heart. Wawa was a rescue from a farm in Mississippi, where he had been shot. Some of you who have been around since the old days of LiveJournal will even remember when I caught him and brought him home. Befriended him with hotdogs.  So many people in the community came together to help support efforts for his rescue and vet care. He went on to become a therapy cat and Emotional Support Animal. He helped me through the most difficult moments in my life. He has been a constant source of happiness and laughs, always talkative with a wide range of vocals. Many of you over the years heard him, whether we were on the phone or playing video games with voice chat, and especially when I started streaming.  He was our official gaming and raiding cat, always wishing good luck meows on big boss fights. Everyone who met him loved him. Even people who didn't like cats.  He changed the minds of many people about cats.  He touched the lives of many.  I owe a special thanks to Sherry and Marshall, and to Brian, for when you fostered him temporarily when we were in bad living situations. You helped keep our family together and gave us hope when we most needed it. I am eternally grateful to you all. Wawa had been struggling on and off with health problems over the past few years, mostly GI and thyroid stuff.  Every time I took him in for a new senior exam and bloodwork, I feared the worst.  But the vets always remarked he was the healthiest elderly cat they had ever seen, besides the more minor problems he had. He had his recent checkup a month ago and everything looked and sounded fine, besides weight loss. We had been struggling with keeping weight on him, just something that happens with geriatric animals after certain point. He was on a special diet later in life and medication to help. Wawa had been improving and able to eat more solid foods again, and it gave me some hope that we'd get weight back on him and he'd be okay and I would be blessed with another year or more of time with him. His mind and his soul were always willing, but his little body just decided it was time. He passed away safe at home, surrounded with love and comfort.  Wawa is in a better place now, free and whole in spirit. He will always be with us. Energy cannot be lost. It simply changes forms. Thank you for everything. We love you. Rest easy now my little Wah-ling. ------- " We'll be alive again in a thousand blades of grass, and a million leaves; we'll be falling in the raindrops and blowing in the fresh breeze; we'll be glittering in the dew under the stars and the moon . . . "                 -  Philip Pullman

[leopardwolf]

Have A Slice Of Darwinism With Your Coronavirus

I originally wrote this sometime back in May I think, but it got lost in my drafts and I forgot to post it when I got sick.  Sharing it now because it is still very relevant and cringe worthy laugh-able in the "I told you so" sense.  Wish I would have posted it back then for better irony laughs revisiting it. = = = = = = = = = = = = = = = = = = = = It amazes me that despite a global wide viral pandemic, people are still swarming to bars and beaches like flies on shit. There is no such thing as "social distancing" in places like that. Immediately going right back out after quarantine limits were lifted and acting like it is just a normal day and "business as usual". No caution or concern about the virus. No masks, nothing. People flocking back to places like the mall. I'm sorry, but there is nothing at the mall that you need to get, that you can't get anywhere else or buy online and have sent direct to your home. Places made specifically for the sake of large social gatherings are worse. Packed tighter than sardines in a can in some pictures and videos I have seen.  They get a few alcoholic drinks in, and forget all about any sense of caution they might have had, which was clearly slim to begin with. Entitled children ( and yes I use that term to refer to adults doing this as well ) who think their socializing is more important than preserving the health of the world population. Their kind of idiocy will be the death of us all. Population control.  Darwinism in action. I cringe to think of resurgences in the outbreak we will see over the coming months. They will blame new outbreak spikes on everything but their own stupidity and the criminally dangerous handling of this entire situation through all levels of US government; local, state, federal. Dear politicians: As usual, you all dropped the ball and failed us all.  Not taking this more seriously the second it was whispered behind closed doors, before the general public even found out. You all were more worried about the corporations and money, than properly educating ignorant people about how dangerous this thing was. Pretended like it wasn't so bad.  Many states saying let's open back up early!  Clearly science and the CDC guidelines and warnings, they shouldn't be followed, noooo. It would require some level of actual common sense, intelligence, and higher reasoning skills, to realize doing so is a very, very bad idea and is going to make things worse. Something you and your sheep followers utterly lack. I hope this will be a serious wakeup call for the US and world at large, to stop letting politicians and mega corporations control everything in the world just so they can fill their own pockets and keep the rest of us struggling and dying for them, just because they have the money to do whatever they want to sway legislation so it only benefits them. Mega corps need to be forced to pay their taxes and not benefit from tax break loop holes that put the burden on the people who work for them and buy their products.  That is what keeps them so filthy rich and greedy, while all these bastards in the government are bought out by their bribes and under the table support. They all need to be taken out back and shot, repeatedly.

[leopardwolf]

On Life And Dental Emergency Stuff

Checking in again. Trying to be better about doing it and write more regularly. But don't want to burden anyone with any more negativity than already exists in the world, so I don't talk about half the stuff that does happen.

Still pretty raw and numb over losing both my Aunt and Ember. It has been rough, for the lose itself, and the millions of complications each loss created. Finally managed to get a box of tissues from the store and had a good long and hard cry. Trying to cry a less and not feel sad when I remember.  Trying to celebrate them and remember all the happy times. Tried not to cry while writing this - didn't succeed.

Otherwise not much has changed for us, despite the world gone crazy. Mike working from home and me disabled and staying home majority of the time, we already tried to avoid going out in public much before the outbreak.  Only problem was the increased difficulty of getting anything we ordered online or for store pickups, which we regularly used before everyone started doing it. At first everything was out of stock everywhere. I think the stores are starting to catch up to some degree. but it still sometimes takes multiple orders to snag everything we need, especially the most in demand products.

Been having trouble with my broken teeth and jaws again. It has gotten pretty bad, and I discovered that no one around here accepts the adult Medicaid I have. Not even regular dentists. So I literally would have to go 3hrs+ for any dental treatments of any sort, for it to be covered and not have to pay out of pocket. That is absolutely insane and unacceptable.  Why is dental care not considered as important and part of medical?  Sorry you don't have any teeth or can't eat anything, sucks to be you!  Being able to eat and have healthy jaw structure to easily speak and perform other daily activities, nope, not an important quality of life factor at all.  That seriously needs to change.

I have been miserable for 5yrs + trying to get my dental and jaw issues fixed, just getting worse over time. The pain has been so unbearable at times, I have been suicidal. So many times I literally thought about taking a pair of my jewelry pliers and scalpel to pull them myself. Just to make the pain stop. The amount of pain and related side effects I endure from the numerous exposed nerves and broken teeth, amplified by my neurological and pain sensory disorders, has left me unable to function a majority of the time, even with nerve blockers and pain meds.

I am not sharing this to upset anyone or make anyone feel bad. Just that I think people should be aware things like this happen to others and are not widely recognized like they should be. Until they are, the system will not be forced to change. No one should be forced to live this way, for years, just because they can't afford proper treatment.

These providers shouldn't be able to get away with denying someone care just because they don't want to accept Medicaid. Especially in an emergency situation like mine, with abscessing, infected teeth. People on Medicaid are normally the most vulnerable and at risk, many with little or no income, who desperately need help and like with my own situation, try as they might to improve their life situations, constantly get screwed by the system. It is disgusting and makes my blood boil in a rage I cannot properly express in words.

Anyway, enough of that. I hope that all of my friends out there are safe and well during these strange times.  Please continue to stay safe in the "better safe than sorry" sense.  Wash hands, wear gloves and masks, and treat it seriously. You might not be effected by it. But people like myself, my mother who is having cancer treatment, and my grandmother who is in her 90s are at a higher risk.  People like us could get it because someone else was selfish and careless thinking everything is "back to normal".  So just be smart and cautious and considerate of other people, and encourage everyone you know to do the same, so we can all get through this as safely as possible.

[leopardwolf]

Ceramics Stream

Hey everyone!  I will be streaming ceramics art stuff and maybe some game play after, for those of you interested in watching. I will be starting sometime around 6pm CST. - https://www.twitch.tv/leopardwolf

[leopardwolf]

Checking In

Deepest thanks to everyone who offered their thoughts and prayers and support after Ember's passing.  It really means a lot to me. I know many of you met her or were inspired by her, one way or another. She was a remarkable, one of a kind dog. The family we adopted her from sent a beautiful memorial flower arrangement. I will share a picture of them and the memorials we are having made for her, as soon as we get them back. I got really sick with a massive flair with the upset and stress of Ember's passing and other stuff going on with my mom going through cancer treatment. My jaw and face have been sore and swollen on and off during this time because of it, so I have just been sleeping a lot trying to feel better. Hope everyone is doing as well as can be.

[leopardwolf]

Ember Crossed Over

A bright new star shines in the sky tonight. Ember crossed the Rainbow Bridge this morning.  We knew she didn't have much longer, but didn't expect it to be so sudden.  She had been improving over the last week, and seemed more like her old self the past few days. She passed peacefully in her sleep at home. March 5th would have been her 14th birthday.  I feel like I didn't do enough for her, compared to all she did for me as my first assistance dog. Ember is in a better place now, no longer in pain. She will always be with us. Energy cannot be lost. It simply changes forms. Ember dog had a metric ton of energy, the kind that doesn't just cease to exist.  She wanted nothing more than to be as close as she could and make you as happy as she could. Gentle,kind soul. Thank you for everything. We love you. Rest easy now. ------- " We'll be alive again in a thousand blades of grass, and a million leaves; we'll be falling in the raindrops and blowing in the fresh breeze; we'll be glittering in the dew under the stars and the moon . . . "                 -  Philip Pullman

[leopardwolf]

Blessed Yule

Bright and Blessed Yule to everyone. Merry Winter Holiday, whichever one you celebrate, to everyone. May all your dreams and wishes come true.

[leopardwolf]

Returning For Good, I Hope

No better time to return like the present. I have been away dealing with a lot of things, some of which I cannot really talk about, and others I may. I have some good news to share soon.  How have you all been?  Well as can be, I hope. I have a lot of catching up to do. Point me toward anything you'd like me to know about, and feel free to message me privately with any updates you wish to share. If I miss anything, my apologies. Catching up with months worth of writing from all my friends is no easy task, and goodness knows I am not perfect at it by any means, but I will try my best.  Much love to all of you, and looking forward to catching up.

[leopardwolf]

Hellblade: No WSAD To Arrows Remap?

I was going to play Hellblade: Senua's Sacrifice tonight or tomorrow, only to discover you can't remap WSAD to arrow keys. I normally do, for accessibility reasons ( bad fingers and wrists ). Console gaming is clearly more important than PC. Will try and find a work around.

[leopardwolf]

Confession #4,892

Everybody thinks modern medicine is amazing…until you get a condition that isn’t easily diagnosable/treatable/curable. Then you find out how much doctors don’t know.

[leopardwolf]

[leopardwolf]

“Why aren’t you using a mobility aid now, when you were using one earlier in the day?”

Pain medication

I was preserving my limited physical ability so I could use it later in the day

Another part of my body is hurting and preventing me from using that mobility aid and I must bear the pain

I  forgot to use it and now my brain and body are on fire

I chose not to use it and completely regret it and now my brain and body are on fire

[leopardwolf]

I think something not often talked about with chronic illness/pain is the sense of dread/doom. Like I’m not talking anxiety, although it is similar. 

It’s when there is something so wrong with your body that your brain goes “this isn’t right” “oh I already know that” “wait this really isn’t right” “shush I know that” over and over again and you’re just left with this sense that something is wrong.

Not to mention how hard it is to figure out what’s a gut feeling/intuition/warning bells or whats a flare or bad moment. If I dig down and my deepest feelings are pain/discomfort, what do I trust? A pain-addled brain?