My Occasional Steed – A Wheelchair

Author: Vivid Muse  //  Category: Health, Soulful, Too Long For Twitter

It feels weird to make an announcement post of this, and it’s taken me days to write somewhat coherently (still fighting cooties), but I’m pushing publish as is. Apologies to thems that want one, but I’d rather do it this way than do it personally or have anyone surprised or worried, and have to console them, because that’s not what this is about.

It’s about accepting a tool and empowering myself with it, as I face an arduous drive to visit family in Texas and enjoying it as fully as physically possible.

But, you know me, it’s really about chasing giggles and my refusal to stop when my body fails but otherwise am well enough to go. And since I’m currently fighting cooties and feeling like an exposed raw nerve, I may as well be transparent before I change my mind, in case it helps someone else someday, somehow.

Similar to my previous post about using a walker at home, I’m not doing this until I feel like I have to, but with my health issues, including Fibromyalgia, I’ve long relied on wheelchairs at arrival gates at airports for the ability to get in motion faster. Being seated for the length of a flight with the other hazards to be navigated, I struggled and it slowed us down, so I started utilizing a provided wheelchair to stay out of the way of others and to make it to the next gate on time.* As health issues fluctuated, it’s become a tool I use with less hesitation and with Balticon coming…

So, last Labor Day weekend, 2015, I was in bad physical shape with lots of pain. I was also unwilling to miss out on a planned trip to the National Zoo, however, with family and dear friends. My choices were to either miss out and stay in bed OR swallow my pride and use a wheelchair loaned to me recently by dear friend, Lisa.

Our son, his wife, and their son were moving away the next month and I just didn’t want to miss a second with them. It was a glorious and happy, yet inconvenient day. And spending that time seated allowed me to physically feel well enough to attend a friend’s birthday celebration the next day, where Chooch and I introduced our grandson to friends that hadn’t met him yet. Although migraine stuff made me miss some of it, but, hey I was there! But I was embarrassed and it was so inconvenient for Chooch and the rest that I chose to kind of forget about it.

Until visiting friends earlier this month beyond The Wall, aka, the Canadian border. It was a delayed November anniversary prezzie to each other, delayed for passports and the promise of spring. We had stuff we wanted to see, but mainly visit with old and new friends we don’t often (or ever!) see in a less-chaotic-than-Balticon setting. We arrived Friday and did a bit of walking but retired early for recovery and fun the next day. I was fighting neurological stuff on Saturday until later in the evening when the physical pain and intense fatigue was hitting hard. We collapsed as soon as possible, but it was clear I pushed too hard while distracted with Niagara Falls, Toronto, a casino, a FrankenBurger King, butterflies, poutine, a romp through a Hollywood wax museum, but mainly enjoying our small group vibes in Buffalo + Canada to the point of addiction. They were all so kind and cautious about my health issues that it made them even more irresistible.

We had plans on Sunday to go to an aquarium, a lifelong passion of mine. It’s a shared passion and Chooch and I visit in every city, and drag along kids, whenever possible. But I found myself unable to walk beyond minimal needs after the excursions the days before, essentially because of my refusal to halt them earlier. I did the usual triage, heavy meds and leg elevation and soaks back at the hotel, but my body simply needed more recovery time before doing any walking and I was facing a day alone in the hotel room. In bed again, just a different place. Chooch would have offered to stay but I’d have kicked him out.

I was pretty devastated, so when it finally occurred to me, I scrambled to the Ripley’s Aquarium in Toronto website and yes, they lend wheelchairs for free on a first come, first serve basis. We weren’t even sure there would be a wheelchair available until we arrived and I really had no back up plan, other than napping in the car, but I was so swiftly and kindly accommodated that I only remember it as a blur of kindness until I found myself just inside the entrance – warm, seated comfortably with Chooch in front of the first sea life display as friends Nutty and Tek arrived. They’d had very little warning of my situation, but I know they are utterly accepting of my disabilities, and they were more kind and patient with the inherent inconvenience and delays.

I chose to go to the aquarium and risk embarrassment (few wheelchair riders seem to have cotton candy colored hair apparently, so I really stand out!) and am now choosing to share more pix, to show what I look like when in a chair and that I’m fine!  But more importantly, to show what I gain when I choose to swing from the chandeliers by bracing for stares and inconveniencing the HELL out of those that let me.

FACT: When you’re this age and this size, many adults assume you’re being lazy. It’s why I never go to the store if I need an electric cart. Nope. Parking in handicapped spots, legally, is bad enough.

But since I handily put away fears in face to face interactions, with family, friends, strangers and their kids, I’m also putting aside fear of ridicule by or accusations of sympathy and attention seeking. Becoming disabled at 40 with an invisible illness has been quite educational in teaching that no matter how intelligent, respected and seemingly kind people can be, in real life, that’s not always the case. Nothing stings quite as badly as when it’s someone I care about, but time heals all wounds, so don’t waste any more of my time if that’s your opinion. #HarshlyWorded? Can’t tell, #PainCranky.

A wheelchair won’t work every time to get me where I want/need to be, and that’s okay. I know I reach for every brass ring, and if others doubt that, I just will not waste energy on defending myself further.

I also hereby affirm that I stand by the pinky swear to a specific few about what to do if I find myself only mobile via a scooter thingy. A random sampling of statistics seem to show that for chronic conditions, once you get in, you don’t gain back full mobility again. Remind me to fight if I ever forget, but don’t judge me for using this tool, only as needed, I promise. *raises pinky* #YouKnowWhoYouAre

Clearly, it was a big deal for me, so I’m getting my own travel chair in case of need, to make it more possible for me to be out of my room and enjoy the special bonding time with far flung friends. Especially at the new, larger, more spread out convention hotel. If anyone has recommends for a lightweight travel wheelchair, plz and thank you link in the comments.

Here’s me, having no regrets, with wonderful people, out in the light of day. #NoShame #NoSadness #SilverLinings #ExtendedGiggleChasing

Click on the image below to go to the full Flickr album, if you like. That’s where the good stuff is… yup, my grandson at five months old, last Labor Day weekend at the zoo.

Giggles on Wheels

*For those that may be now considering a wheelchair for travel, I’m writing another post with my views in the next few days.

Memories with Sara

Author: Vivid Muse  //  Category: Family
Life changed direction and we grew apart. My memory sucks and looking at pictures is breaking me, so instead I’ll share memories on constant loop in my mind since last night.
Simply put, verbs from when we were young, and from when we were sisters and life stretched out like infinity in front of us.
  • Sharing eyeliner and makeup tips in the locker room after gym class.
  • Crushing on the same boy in high school. I can’t even remember his name or what he looked like.
  • Reconnecting after separately moving halfway across the country, closer than ever before.
  • Standing as a Feminist with a captial ‘F.’ You were the first person my age (early 20’s) to loudly proclaim it, and until then, I didn’t know you could just do that. I thought Gloria Steinem had to induct you or something.
  • Being the only person who would go see Henry Rollins’ spoken word show with me at DC Space in the late ’80s. You didn’t even like him then, you just knew how badly I wanted to go.
  • Overcoming the overturned Big Gulp all over our laps on the drive from Manassas. We decided we were women that put experience over appearance and went anyways.
  • Encouraging me, even after all that and the departure delay it meant that night, me to walk up to Henry after that show and talk to him and get him to sign books. I think it was my first artist moment and remains a favorite.
  • Being pen pals while away you were away at college because Facebook didn’t exist yet. We called too, but didn’t we have great fun in finding/sending silly cards?
  • Ganging up on me, along with my Mom, as we crawled our tortured way through DC and rush hour traffic in a soft-top Jeep Wrangler during a horrible rainstorm. Y’all wouldn’t stop until my crankiness finally snapped and I cussed you both out. When Mom said, “Well, bitch, bitch bitch, no one likes you,” we all started laughing and couldn’t stop for the whole ride home. I finally stopped caring about how late we were and we had such a great time, as literally no other trio could have done.
  • Surviving that one special first diaper change together, resulting in us both in tears on the floor laughing and crying because it wouldn’t STOP.
  • Laughing too loudly, as ever, on a harrowing road trip to Maine in a blizzard at night.
  • Using a cassette case on that trip to scrape snow from the windshield, without gloves.
  • Learning from stupid shit like that on how to be prepared and a bit more grown-up.
  • Loving all life, animal or human of any designation.
  • Sharing that love, ever so gently, with a fuzzy caterpillar found on a tree with the birthday boy and cousins. It made the mountain of gifts at the child’s birthday party invisible, during that magical time.
  • Teaching respect for life, by just as gently returning that caterpillar to where he was found, and explaining why you did so to the children listening so intently.
  • Making memories as you made gifts of homemade cinnamon/sugar butter as a kid’s activity.
  • Spending 3 hours in traffic to show up and take me out for ice cream on my birthday one year, just cuz you loved me and said I deserved spoiling and wouldn’t take no for an answer.
  • Comforting, with love and laughter, as my Mom fought her first battle against cancer.
  • Holding my sons in hospital, shortly after their births, instantly and forever an amazing and devoted aunt from when you first gazed on them.
  • Riding, your whole life, on the backs of horses you loved so much. The love and peace and special smile that would spread across your face when nuzzling was enchanting to watch.
  • Singing, louder than the stereo turned all the way up with the windows down. The song below sprang to mind and sounded so sweet with your voice that I won’t seek a meaningful song or read the lyrics of the one below for deeper meaning.
 I’m so grateful of all the other verbs, nouns, and undefinables that we shared, all those years ago.
Rest easy knowing you’ll never be forgotten and will always be missed and loved. Even with my failing memory, it’s simply not possible, darling one.

#EndCancer

A Too Wordy Response to a Facebook Comment on “Googling It”

Author: Vivid Muse  //  Category: Twitter/Facebook


This morning, I indulged in vague booking, to ensure that people not following an exchange know my rules for Facebook interactions. I was startled by a comment, but must comment out of fairness of the question. After two hours since starting my response, and looking at the length, I decided to make it a blog post. Who knows, maybe someone can relate or get a peek behind and invisible disability and accessibility entitlement.

My original vaguebook:

When you ask someone for links to unheard claims they’ve made to you, but they won’t provide them because they’re above doing research for you to simply dismiss. Guess it’s not as clearly provable as the first statement indicated. I assumed it was info sharing, my bad. I wouldn’t ask for links if I don’t want them, but Grump supporters have trouble providing them. Interesting problem.But wow, such a timesaver! I won’t exert any effort into googling it since it’s not important to the person that made the claim, plus we clearly support different ideals for the country we share. If it were so truly important and relevant, why not shout it from the roof tops by linking to it?

FWIW, I follow each of the remaining candidates on FB in the race, and in addition, Chooch ensures I’m very well-informed. And thanks to my Mom, I’m not a pussy about my opinion WHEN I decide to share it. The combination of the two makes me impatient with speculation being named as fact, and being talked down or insulted into silence by anyone.
*bloop*
heart emoticon
Peace.”

~~~~~~~~~~
Shay commented, “But… I’ve asked you for links to prove something you posted and you’ve said no. How is that different?”
~~~~~~~~~~
My response:
This is hard to explain without being accused (not by you!) of playing the pity card.

But you asked an honest question and my meds have kicked in (LOL), so I will be honest in response.
Just remember that I do not easily discuss this part and am sensitive on the subject, after suffering much brainy/scholarly elitism and shunning. Be honest in response, but not mean, please.
The short answer: is that the person could have easily Googled and linked, but choose not to, reportedly on principle, while I cannot Google easily with reliable results to know if we’re even talking about the same concepts. And my timeline is the best way to see where my opinion comes from and frequently, I can’t help beyond what I’ve already linked. Or maybe that day I was cranky about something totally unrelated and snapped at you unfairly.
The long answer:
I publicly admit that constantly lowering the perceived intelligence bar is a true struggle for me, as I continue to go through different health issues and treatment attempts. They impact my comprehension, retention and other fun stuff. But I used to be intelligent, quick-witted and confident about it. My Google Fu was high, in those days. I loath asking for help and would find the answer myself if at all possible. “Beauty is only skin deep, but I’ll always have my mind,” I’d say to my overweight body. In fact, I didn’t discover I was strong in accounting, just like my Mom, until shortly before I lost that same strength. Just long enough to fully miss it, by even daring to dream of being a CPA some day. I didn’t appreciate it enough while I had it, because no one wants to face the possibility of what I have or worse -Alzheimer’s or dementia. For example, I spend half an hour writing something the length of the original post, with many re-reads. And I recently discovered that I attempted college in 2012, only because of my student loan history. I kinda remember what an instructor looked like, but not the name of the class(es?).

My mind is not on my side any longer. My memory is bizarre in its retention. I used to be logical and analytical and detailed and factual. Now I’m a blur trying to express things in a different language that I’m still working at learning to use effectively. 
I’m even fighting an anxiety attack for fear of inaccurately expressing myself and causing offense where I don’t mean it, while fighting a screaming sense of being under attack. But I don’t think you’re like that, so bear with me. 
That’s not even mentioning the body issues or the other neurological symptoms that I have, primarily chronic intense pain and/or the resulting drugged stupor, with all the possibilities in-between in flux.

I’ve spent years fighting my disabilities and so far I’ve lost. I’m getting new specialists and have not nor will I ever stop seeking my “silver bullet,” but I have to come to terms with what my current reality is and grieve it. The silver lining is that it’s only pain and hopefully not degenerative or life shortening, other than not being able to run or have cardio exercise resulting in gaining back weight.
I have spent years in denial as to the width and breadth of the impact as I continue to try and find a way to function since onset in 2009. But the last years have crystallized things such that I simply don’t have that luxury anymore. I have to come to terms after I assess what that means.
So, I’ve spent some time grieving what I can no longer deny. I’m physically disabled my brain function is impacted. I can wield medication, caffeine, sugar and adrenaline to keep going with varying results. The same things happens ever ytime I stop moving though. I can’t move again until Recovery happens and I never know how long that will take. Currently stuck in bed, my head pain is primarily TMJ and my head is fairly clear from body pain meds, hence the ability to find words but there are too many of them. 😉 
One of my work-arounds is that I need visuals and literal statements. It’s why my photo and video captures and Facebook check-ins have taken such a huge increase. I sincerely panic because I don’t know if I’ll remember that moment later. So, I don’t read summaries or opinions unless I struggle with understanding, because I need the original poster’s link to verify the source and its literal wording. I don’t want to confuse other opinions with facts, I’ll confuse them well enough with my own opinions, thank you very much.
An example of a work-around to my frequent inability to do my own research: I am blessed to have a husband that spreadsheets out even mildly complex data to help me with our decision-making. He doesn’t tell me what to think, he gives me the information that lets me draw my own conclusion. 
He does that partly for himself, as a data junkie, but the amount of detail is unnecessary for him because he remembers things easily. I don’t. (This election cycle’s spreadsheet will be very interesting.) And because he knows that I’m still in here and he still (somehow, lol) loves me, he feeds my mind in a way that keeps it thriving.
He knows that I’m fighting to take in data — I can’t read dead tree books NOR can I work on computer screens for more than an ever-changing chunk of time with recovery time between. For the podcast we do, he only needs to watch the episode twice: once for pure enjoyment and again for show prompts. Meanwhile, I watch it anywhere from 2 to 5 times, depending on my health and the violence/emotional stress of the episode. I have to rewatch the previous season the week before the new season premiere to remember what the hell happened. I used to also listen to every episode we posted, so I wouldn’t be able to repeat myself, but haven’t been able to track that for at least 3 seasons. I frequently forget seeing entire movies and games played, but for all the pix I take. 
I’m fighting to process data, since my thought processes now seem to be similar to my understanding of ADD. I even bought a recommended voice to text software to help with communication after a disastrous period of auto correct and dexterity fail. I added the app to my phone and then tried to install the software on my laptop, but struggle with such things and haven’t gotten far in the year + since I bought it.
I’m fighting to express myself, partly because of distortion filters that everyone has, but that I struggle desperately against. I also acknowledge that they are there, which makes me impatient with those that refuse to manage their own and/or their expectations of me as I continually manage my own expectations of others, based on the chaos in their own lives.
I struggle immensely with needing to be “accommodated” for my disabilities, but I have a fresh perspective after seeing how Canada’s society views me as opposed to the US after our visit this last weekend -without scorn, primarily. I paid it forward with kindness for others when I was of full health, and our society isn’t as kind as you’d think, on the daily.  

I even struggle when the Fibromyalgia “fog” rolls in to make the simplest of choices. I have zero decisions or clear thoughts to give and as I was reminded this weekend, I shouldn’t be ashamed or embarrassed because of it. The medications make it worse. I simply have to allow myself to ask for help, accept it if I need it when it’s offered, or in this specific case in Facebook, specific information. But when I do and I then get slammed for being lazy and closed-minded, it really stings and I react accordingly. 

In summary and after too-much explanation without a formal structure, that has taken me over three hours, off and on, to type, the difference is that I was asking for information and he denied it to me. The word entitlement comes to mind, but it may or may not apply.

So I can’t easily Google a few phrases with any hope of finding that specific point. I’m to remind myself that some people can’t calculate a tip in their head and I usually still can.

It’s just that I’m exhausted from callousness and accessibility elitism. I won’t explain myself to the person, either. The response is moot, as I can’t rely on my interpretation of it, so it‘s lose/lose and I’m not trying to shit on anyone else’s path, essentially. #IAdmitIHaveDistortionFilters #ButIAmAlsoWorkingOnIt #Thhhhhppbbbt

Specifically in my post, when I said, “I won’t exert any effort into googling it since it’s not important to the person that made the claim,” it was because that can turn into a huuuuge chunk of time for me and I won’t spend it there if it requires my attention greater than the resulting information could possibly impact. (Does that make sense?) So many offensive things have been done by candidates, even if it were true, it doesn’t come close to the damage done by Republicans against the interests minorities of any kind.
Sidebar: it’s especially hard to swallow from people in a minority under attacked. Hello? Ladies? Your vagina and uterus are being decided upon. Please make sure that your voice or your silence delivers the message you intend. <3

What I have said in sweeping general statements is only after I have cobbled together enough information thru extensive track-backs to original articles. I try to take great care in what I say because of gossip that’s gotten back to me and the unfair expectations on me. I’m gun-shy, but I say them because they are things I feel have been proven without me having to link to it, sometimes after posting the links previously. I use Facebook and other social media as a tool against isolation and depression and it’s not my job. It’s my tool for my specific use and I won’t take the time or energy to go back and research for someone else that can do it far faster than I and without needing a break afterwards. I’m speaking literally, here. The assumption that I can do otherwise is poorly drawn, but likely my fault since I’ve been shamed into not speaking about the mental aspect of my health blahs.

And sometimes, it’s complete passion that blinds me to say something, right and/or wrong. When I catch it, I admit it. Girl, I say dumb stuff all the time. I’m FAR more edited on a keyboard, same as anyone, but I too talk out of my ass. It’s part of the human condition.

That said, I estimate that almost to a one, my conclusions are drawn from things I’ve previously shared. If I’m wrong, link to the right information or don’t waste my time with bored trolling. I’m sorry they’re bored, but they should find a charity to donate their time to if they want to actually make a difference.

The disparity in level of effort isn’t considered and I was denied information. I’m ok with that, since, as I see it, I have been and will be disregarded at some point again later anyways. You should note the difference between the response there and the response here. It’s based on personal interactions and my understanding of the differences between the intentions of you both. I have no regrets.

Aren’t you glad you asked, Shay? I hope it makes sense, I’m out of time to organize it better. #Oops

Trans Women in the Ladies Room: A Welcome and a Survival Tip

Author: Vivid Muse  //  Category: /rant/, Too Long For Twitter

 

Trans Woman or Bigot

I saw this picture on Facebook and my post grew to too many words. Apparently there’s still controversy over women using the ladies room, simply because of how they obtained their feminine appearance. I had such a visceral reaction, I had to get my milk crate out to stand on. *ahem*

HELL YES to this post and here’s why:
20-ish years ago, when I was a young mother at work one day, I was using the facilities when I noticed a hand mirror under the stall wall next to me.
Confused, I then noticed the hairy knuckles and bare feet in that stall and yelled. I was still foolishly trusting in those days and couldn’t make sense of what I was seeing, so I otherwise froze not knowing what to do.

 Luckily for me, when the pervert realized he was seen, he bolted instead of staying. He was probably gone before I felt safe enough to exit and run to my office to call the police, but definitely before the officers arrived. The location was a professional office building where I worked for a real estate office. Lots of foot traffic, and no one saw a shoe-less man running out of the building.

I never saw his face (or shoes!) so couldn’t pursue further. OR determine if it was a co-worker or someone else that worked in the building daily, meaning it could easily happen again.

Ever since, I’ve assumed perverted men are in stalls next to me. It’s no big deal, just take an end stall and watch the shared wall. It’s never happened since then, which I know because my residual fear means that I watch closely. IMHO, you’d have to be perverted and/or dangerous to get off by violating a woman’s privacy to such an extent, and risking arrest, just to watch her pee or poop. Just…. beyond disgusting. And I’m watching out for them.

Meanwhile, no woman has ever used the mirror peek trick.  I actually feel safer knowing there will be more women in the ladies room. It’s less of a chance for perverts to creeeeeeeeeeep around in there unnoticed. 
 
For those worried about their kids seeing something “inappropriate” if a trans person is in the bathroom, then why do you let them go alone in alone at all?
Don’t you worry about them having an experience similar to mine, at their young ages? Regardless of whether the perpetrators are culturally permitted in the restroom, or not? Please give it some thought.

To the trans ladies, I continue to welcome you! But please let this serve as warning to you of the dangers of being in the ladies room:

Be vigilant for your privacy and safety at all times, including the bathrooms, for you are now a part of what I think of as “The Prey” gender. You will likely be targeted and victimized by some just because you are female and “up for grabs.” I’m so sorry for that, because this nation hasn’t done enough to lower the incidence of sexual assault against females.

Please, use your voice LOUDLY and don’t let anyone disrespect you. Even those with good intentions.

Namaste.
 
For the Dudes
For offended males that I trust:
This isn’t about you, but it’s good for you to know about. I similarly warn young females about this and about never leaving a drink unattended and watching out for each other. Consider protecting those in need.
For other males that are offended:
Welcome to reality. Suck it up and be grateful that you are a part of what I call “The Predator” gender and don’t piss me off with stupid sexual comments. Know that I give you the gift of believing YOU aren’t one, and hope that now you know what some women suffer through just to get through a day of work. For 1/4 less than you likely make, but with potential the sexual harassment gauntlet to run every day.

If you are one and know it:
GET YOURSELF HELP. You deserve a better life than the shit you are now doing, and your current/future victims deserve peace.
The emotional damage doesn’t end, and the world is hard enough to survive. Agreed?

What I Learned Today

Author: Vivid Muse  //  Category: Too Long For Twitter

I attempted college in 2012.
I was unable to read/retain/communicate the information.
I was unable to make it to a lot of the classes, I’m guessing because of migraines or dizziness.
I only know this because I just read it in something Chooch wrote.
I have zero recollection and don’t even know what the classes were.

It’s shit like this that gives me peace when I get sad that our son and his family have moved far away.
I was already growing more and more limited in what I was able to do for him/them, as he is literally thriving and too heavy for me to lift, oftentimes.
Finding this out, in spite of not being on those types of meds any longer, has me even more grateful that he never came to any harm in my limited care.

Conclusion, silver linings are everywhere, if you look, tilt your head, and squint *just* so.

One last bottle for the road!

Our New Nest, A Year Later

Author: Vivid Muse  //  Category: Family, Too Long For Twitter

Yesterday was exactly one year from when I announced our move into our “new nest” which ended up being called The Seuss, for silly reasons.

I was too exhausted from fighting a very persistent migraine to write an update, as we are now watching our oldest son, his wife, and their son pack their belongings to move out of state. It’s been a chaotic yet wondrous year, and I’d like to retain my thoughts today, just a few days before they hit the road.

We moved in with much chaos and many hidden fees. This isn’t terribly surprising in hindsight, since I’m not as smart as I used to be, at running households. Our life was so simple previously, I’d forgotten all that goes into the expenses of moving to another state, and Chooch was too busy working, commuting and moving things in prep for our move.

Little Bear arrived in early April instead of late March. He was the light at the end of a dark tunnel for so long that now he is simply the brightest star in a bright sky. He’s super cute, very clever, as strong as he is heavy, and is always looking for a reason to smile and laugh. In short, he’s my dream grandbaby.

My gratitude for being with them during this special time has not only grown, but it’s far more far-reaching than expected, after being able to include dear friends into our family experience. Having all those infinitely helpful and kind friends was very comforting at a time when nerves were exposed and raw and different medications were being tried out for pain relief.

Although we knew this was going to happen, I find myself surprised that it’s actually happening now. Already. I’ve taken thousands of pictures and hours of video to see me through missing them, tho and I’m hopeful that the kids will send pix so I don’t have to launch a drone near their place.

But in all honesty, I’m reaching the end of my usefulness in assisting in caring for my grandson. With the chronic pain health blahs, there are frequently days that I can’t even get out of my room to see him, let alone be of a help to his parents. It’s heightened my sense of failure. Who can’t pick up their grandson, at six months, for Glob’s sake?!

Me. That’s who. And I’ve known it was going to spike when he hit six months, since 2 weeks after his birth. We were out with friends Billy Flynn, the Flynnstress and their six-month old daughter MJ. She’s lively and clever and active and quick to laugh and smile. I was shocked to find that I was barely able to hold on to her and gave her back way sooner than I wanted. Shortly after that the kids nailed down their plans to move, and what was a heartbreaking and very deep blow due to their upcoming distance, well, later it strangely made it easier for me to process the kids leaving.

Little Bear weighs 18.6 pounds right now, which means it should be no surprise that I frequently can’t lift him. And when I can, it’s grown briefer and briefer as he’s thrived and grown. I’m “disabled” so that’s expected. Except that he’s my grandson, so I pick him up when I shouldn’t and sometimes have to call for an assist. That’s never a problem because I made a rule at the start not to leave me home alone with him. Between pain and medications that turn me into a zombie to allow me to get in motion to help, it’s just not safe. Even after six months, I’ve only carried him on the stairs once or twice. I made these rules with great sadness and shame, even though it’s not my poor choice but rather, my debilities, but it is for his safety and I do have a lot of trouble with stairs.

When the kids move, they will have multiple families nearby. They will have the kind of help that we can’t give them very often, boots on the ground, in the trenches, help. Naughty Bear’s injury and recovery continues to plague him and will for quite a while. He’s being smart and heeding the caution of doctors, and that’s all a mom can ask. They both have jobs waiting for them and our Galadriel (our son’s wife) will have health insurance again, finally.

Gal’s parents and sister will be nearby, in addition to Naughty Bear’s family in the area. Having been her age when I had my first child, I know how important those bonds are, especially with your mom, and I’m so glad they have been able to push through an unbelievable number of challenges to get back to her home state. Her home sickness has been great and she just needs time with her family, and Little Bear gets to meet them all, finally! Only Gal’s mom was able to visit for his birth, and they excitedly await his arrival. Knowing how great LB’s other grandma is makes it way easier to let them drive away, too!

We hope to visit them next spring, possibly around SXSW time. I have a friend or two I hope to visit while we’re there, since I lived in Texas from ages 3 to 18. That’s if I can let go of Little Bear while we’re visiting. 😉

All of these things mean that it’s the right time for me for them to move, too. My frustration grows, as does recovery time when I’m stubborn. It’s time for the circle around them grow larger in their very own nest.

Chooch and I will stay at The Seuss for another 8 months, at least. We did such a good job on our house hunt last fall, we aren’t finding anything worth going through the effort and expense of a move for, especially heading into winter again.  It’s an especially bubbly-making decision, since our specifically non-specific house hunt landed us within 5 to 30 minutes from most of our dear friends when it used to be an hour or longer. The accidental blessing of location was purposefully again left out of the calculation, but much happiness was felt when we saw it’s the logical decision.

As for our former housemates, we haven’t done the baking and we’ve gotten the Wee Housies together with our grandson less than I’d hoped before they move, but the love remains. Seeing them healthy and thriving is almost as awesome from a distance, although we still need to do a baking party. They did make me promise, last month and I can’t wait to make it so!

Jen is doing great in her new life, and without our chaos in the basement. Sadly, she now has a new struggle, by way of a tragic downturn in her father, aka Elder Housie’s health. He now requires constant assistance and help, and being such a fiercely determined, up and at ’em type of man, it’s a pretty tough blow for him and his daughter. And it saddens me knowing that even if we were nearby, my help would be as limited as the help I give to the Little Bear. It’s another source of frustration, not being able to do things for loved ones, no matter how badly I want to, and I do love that man so very much.

As for being out of Virginia, it was definitely the right decision, even with the unexpected costs. It’s made the last year far more exciting, and being off those old roads ended up with us bonding more than we might have. So I find myself with the knowledge that Chooch and I made the right move for ourselves, a duo, and not just for our family. We’ve been tackling a lot of gnarly issues recently, and we’re only growing stronger and even have a plan to get us out of debt, hopefully. This is a huge thing for us, since my inability to work has had us in dire straits for almost 6 years.

So, with all these things in mind, I choose to end this post the way I ended that one, because I feel closer and more bonded with my husband now more than ever, I can easily again say to the future: Bring it on. We smiled and laughed and held each other at every turn, snatching up silver linings as fast as we could and plan on continuing!

Me, Chooch and Little Bear at 5 1/2 months, 09/2015.

Full Contact Grandparenting

 

Naughty and Little Bears

Naughty and Little Bears

Kaylee the Stalker

Kaylee the Bear Stalker

Day at the National Zoo!

He’s the MOST fun to play with, even when I can’t pick him up. Rawr!

 

Be well!

Don’t Tell Me My Reality – Two Furloughs and Another Possible

Author: Vivid Muse  //  Category: /rant/, Too Long For Twitter, Work

I have so very much to say on others not knowing me well enough to tell my reality, whether it’s to me or behind my back. For now, I’ll focus on the possible furlough because I’m hot pissed about it as we are currently running various personal financial  scenarios with our crystal ball, so it probably won’t make much sense but I’ll feel better. (Identified- I regularly forget/drop/lose nouns when communicating. It’s very frustrating for me, at least as much as those bothering to try to understand what I’m saying.)

I’ve been too sick to tune in to the news today, so pardon my alarm, but if there is no Continuing Resolution signed for the budget and the gov’t shutdown/standoff happens, info on hardship assistance during that time is a struggle, so PLEASE share any you find. I’m adding links that we’ve gathered in preparation for the worst case scenario. (Links at bottom of page.)

*************************************************************

I’ve run back  to my blog because Facebook is too ridiculous.

I’m glad the rest of the country is keeping their eyes on the prize by focusing their intelligence and energy on the silly political reindeer games instead of making personal attacks on me and others living on the front lines of this fiscal crisis.

Oh, wait… that is what’s happening.
Well played, politicians, but… America?
I thought we had something special, but this is not the country I was told it was growing up. How can I be proud of my fellow citizens, with so much hate, judgment and cruelty — without even the ability to understand that they don’t understand, because they are not here trying to survive it.

They sit above us, knowing all, including that the food trucks and the restaurants in the region will lose their customers and that the nation’s capital is like a ghost town. Shopping for Halloween, Thanksgiving and Christmas will be impacted. Travel is expensive, so airlines will be impacted.

Thank goodness for their superiority in their distant lack of understanding, telling me that “we will be fine.”

Either give me your check and I’ll pay you back when hubby gets paid or acknowledge that you and I don’t have a problem with each other.

The problem is in our country’s leadership.

On both “sides of the aisle” it should have been curtailed long ago. The last example is too recent. The biggest complaint was about National Parks and Monuments, and it seems they’ve seen a workaround for that. No worries, your trip to see the big green lady in New York won’t be a waste of your time.

But what will trigger the end of a possible shut-down this time, when it seems they are literally and specifically targeting your government’s civil servants. Why? Because we have been turned in to punchlines by comedians and politicians for decades. I’m not willing to jump in a plane and kill a bunch of people in a war, not even for my country. Without a draft, that’s my choice. But I did serve my country in several different Departments of the Federal Government and all I can say is shame on all of you that swallow it so eagerly. I worked damn hard and the stress is immense when working for DoD, so fuck you very kindly.

We are Americans. We are just like you, with families and bills and insurance payments and have needs like toothpaste, milk and toilet paper. Hopefully the lights, water and heat won’t get turned off for any houses with young families in them.

The politicians hope this time they can again hurt us all for strategy, because if they have National Parks staying funded and open, not enough Americans will notice this time and they won’t get blamed.

It’s embarrassing that these are the people we chose to be in charge, with such a recent lesson clearly unlearned.

And when you laugh at jokes about Feds, you’re laughing at my husband and I. And we both had at least one parent and spouse and/or sibling that work(ed) VERY HARD in our libraries, Federal contract purchasing and oversight, Post-Secondary education, Native Americans, banks, and other positions that support military members fighting for our country and for our fellow citizens. And it’s a shitty work environment, my friends. Unless you are so high up that you make decisions like these, while removed from reality.

For us, serving our country in this capacity is more than a paycheck, it’s a family tradition, so don’t minimize us. When you mock our reality, you’re mocking my Mom, my Mom-in-Law, my sister, brother and father, and other family, along with me and my husband. Every generation has been represented in the military, as well.

Come pay our bills, because for us, it’s not just a news story on our television. It’s the child support we pay; the rent check; utilities; medicine; doctor appointments; medical expenses; fuel and tolls for Chooch to go to work, unpaid; my own inability to earn an income after countless tries, so far.

There are so many that are far worse off than us, from the loss of medical funding providing medication and treatment that is literally keeping people alive; single parents with small children in the house and having to pay for daycare, groceries and their needs while forced to work, if mission essential. If not mission essential, you save on daycare, but you still freak out on feeding your kids.

Is this really the country we want to be? The Incorporated States of America? Because that’s where our leadership is taking us and holding our countries efficiency and budget hostage for their personal politcal chess games.

The cruelty to the poor, young and weak is nowhere near what the Founding Fathers had in mind and yet we still use their words as weapons to further injure the “huddled masses.” Only puppets blindly follow puppet masters, and that’s not the country that I grew up in.

Remember that when next visiting the statue of liberty, which it sounds like will be open for tourists, but closed for employees already here, with families, seeking to earn their income, raise their families and pay their bills.

It’s the new American dream. Survival, please?

********************************************************

Here are 2 few things I found for Chooch to read up on, hopefully it is unnecessary.
*fingers crossed*belts tightening*

Washington Post – A government shutdown: What federal employees need to know about their pay and benefits

2015 Shutdown Furlough Guide

 

 

 

Middle Aged Rebellion?

Author: Vivid Muse  //  Category: /rant/

I just saw a sponsored ad in Facebook with a list of 20 items that women (over 30, specifically) shouldn’t wear, stating “grow up and act like an adult,” as the reason.

I only read it to see how many rules I break and I found the first item was a “graphic tee.”
Really?
A fucking t-shirt?
This is useless, ageist and elitist bullshit.

If I didn’t let my parents dictate how I dressed as a teenager, when they were paying my bills, why the FUCK would I let a stranger whose sole interest is to get my money succeed? While trying to shame me into buying their “style” at (almost) 46?

Note: I refuse to link to the post or utilize it since it’s clearly bullshit.
Soooo…..

I’m now shooting to wear 20 things age inappropriate items at once. Help me by listing items that are age inappropriate for this almost 46 year old grandmother! But remember, I’m modest and always have been. That’s not going to change either.

#MiddleAgedRebellion
#MUAHAHAHAHAHA

Viv(Ham)taro, Halloween 2011

Viv(Ham)taro, Halloween 2011

 

Talk Like an Open Book: My Walker

Author: Vivid Muse  //  Category: Convention Attendance, Health, Too Long For Twitter, Whining

I planned to post this two and a half months ago. I wanted to post it before Balticon for friends that would see it in our room, as warning of sorts. I know my haircut seemed rash for some reason, after years of talking about cutting it all off. Here’s some warning on this one for future visitors to #TheSeuss (our silly nickname for our home.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My General Practitioner prescribed something last winter(? Spring?) that I am only now finally coming to terms with enough to post publicly — a walker. Even after the daily struggles that I described for basic self-care, let alone toning and cardio and strengthening exercise, the determination somehow still felt like an accusation and led to a variety of ridiculous thoughts. I joke about living a #VealLife, but denied the need for a walker, in spite of:

  • Using a cane/sturdy parasol for years. They either compensate for dizziness; strength; pain management; removing cob webs from my sometimes slow moving brain; and hooking stuff to pull toward me when necessities are slightly out of reach.
  • Using braces and wraps for a decade. The trigger for their use was over a decade ago and, really, it took a particularly long time to recover from a sprained ankle while dizzy on stairs in December of 2012. I’m now also alternating compression gloves (also a gift from Heather, they help so much!) and various braces to help with hand joint pain (the pain is similar to broken bones, at its worst) and carpal tunnel. They are necessary for any keyboard work, chores or for holding our sweet Little Bear.
  • For years now, when traveling on public transportation, I have been using all the disabled services available. I feel I’m entitled to since I’m also traveling with my handicap placard. Whether it’s seating on a bus or a requesting a waiting wheelchair after getting off of a plane after hours of my joints stiffening at high altitude (a particularly nasty combo). I’ve literally gone from running in 5k’s and training for a half-marathon in 2011, to now simply hoping to survive the luxury of travel beyond a 3 hour radius. (But that’s a whole ‘nother post.)
  • My refusal of scooters as an option to the extent that I have long told loved ones that if they ever saw me in a scooter that they have to knock me out out of it and make me wrestle my way back onto it, to stay strong. Meaning, I could use it, but only when I HAD to. And I had to be ready to demonstrate that I hadn’t given up the fight, not yet. And if I had given up, it would remind me that there still is a fight to be had, every day.

But… a walker?

My heart sank, as it felt a bit like going backwards so many more steps than having to stop running and then regular cardio exercise. But she explained that it would make me more able to move around with the further stability for my continual dizziness as well as balanced support for my lower body. For years now, I am continually switching sides because of the flare up cause by stress on one side or the other, for using the cane. It would lead to more movement, knowing I was supported no matter which symptom had me debilitated, or chose to hit me while crossing a room.

Reminder: None of my illness/conditions are degenerative or terminal. And I only really remember telling a handful of trusted friends, venting fear of what it might be signalling – the next phase in body FAIL. I was already lost in the maze of options of which type would be perfect for me and was frustrated and venting to Heather, an extremely supportive friend, who literally jumped in at offering not only moral support but … a brand new walker. It was one of my first conversations and I was griping and whining, I don’t want to use one and I can’t afford one anyways and making all the excuses possible not to sink to that use.

Heather said that there was an unused walker, a basic one with the tags still on it and everything, back at her home for a family member that ended up not needing it and they’d just never gotten rid of it. Knowing that the lower end was $50+ after a previous Amazon session, I gratefully accepted the gift after the briefest of hesitations. It happened so fast and was so generous, that it made me accept the need and begin using it. In hindsight, I guess I was ready to use one before I knew it.

Boosters at the ready.

I set it up in our bedroom and then didn’t touch it for months. I had to stare it down and get used it, and to measure if I thought it would help move more.

Then, I spontaneously put it next to the bed one night last fall after laying in morning “stores” (breakfast, drink, pills, cane), in the hopes that maybe the first and most painful steps of the day would have me, at least, better supported than the cane gave with the joint pain I had. I just dove in and didn’t think about what it meant.

It was the difference between crawling to the bathroom and walking, granting much peace. Yup, crawling. It’s that bad and you should know that about me. This is me, now and I use it throughout the day in our bedroom.

In the months since then, it’s been a great relief to have it, next to my bed, every morning. I haven’t left the top floor of our home with one, yet. I only recently have allowed myself to assess and decide I need to pass that milestone, too, which means getting a 2nd one for the main floor. It’s where much of my Daughter and Grandson spend the daytime hours and where I’m of my most use as a human baby monitor, when I’m able.

And as a few very kind people know, I had it at Balticon. There are some folks that kept its presence private and secret, after I voiced my embarrassment, or didn’t have to, and they have my thanks for their discretion. It did make the difference to me getting out of the room or having any productivity in our room when I wasn’t able to leave it.

The following week, I asked my Rheumatologist about the weight of it and differences, after she was so happy to hear my motion has indeed increased with the use of the walker in the bedroom. She agreed that I need something lighter because of my Fibromyalgia “hot spots” for the main level of the house making it more of a challenge to use. And because on days I’ll need it, I sure as hell wouldn’t be able to get the one I have downstairs without aid and I’m shopping for a wheeled option for downstairs. Sexy, I know, but better to know before you visit.

Our oldest son and wife are living with us, and they and my husband are kind to me and I haven’t had to make that move, yet. For that, I’m exceedingly grateful (although not nearly good enough at showing it), because it also allows me to “watch” Little Bear from the comfortable nest of my bed/desk/dining table/sofa in our bedroom. Chooch or Gal are always on the same floor with me, so if any needs arise that I can’t cover still have him safe, but they are free to roam.

I’m the baby monitor, when I’m able to be one, watching him while he sleeps if nothing else. Lifting him, now at 13.3 pounds and two months old, is a painful struggle, but the Baby Bjorn helps, although rarely after getting him in it with assistance. Otherwise, I only carry him a few feet at a time and never on the stairs. Ever. I’m terrible on the stairs now.

Now, as was offered by a dear friend for my cane when I first got it years ago, I could dress my walker(s) up and make it snazzy, but I’ve decided I like the medical/functional appearance of it. It’s a constant reminder that it’s not an accessory, it’s a tool to strengthen my body, and to be used only as needed, not to the extent of my tendency recently towards laziness from fatigue.

I use my current, hefty and solid gifted walker next to my bed, for stretching and light exercise, balance and strength boosting, as little as it is. It’s not as much as other friends have/are doing in the aftermath since brother-from-another-mother P.G. Holydfield’s passing last August. But I’m still fighting where I can, damn it. I have realistic goals that I aspire to so I can make them and feel empowered to aspire to more. That’s my process.

And with all the added stress of moving in difficult times, weight gain has hit this Future Fat Granny. I’m doing ok with little changes and minimizing calories and increasing nutrition in my sustenance (smoothies for TMJ relief). But motion is still so painful that my vascular is not as cardio as it once was. Or whatever.

I’ve got goals for this year, and I need to lose some of the grief and uber nesting weight gain and get as strong as many of my friends are getting, as my body allows. There won’t be a race, but there will be health improvement.

Okay, so, yes, I actually have challenged a few folks to a race to age 100, including my former M-i-L on my Son’s wedding day. She has a lead on me, which she pointed out, and I told her something along the lines of hoping I was there to celebrate it with her. Sincerely. She’s a wonderful grandmother to my sons and I’m so grateful for that.

April 7, 2015

Rushed hospital photos by professional photog. Epic cuteness, and here’s my fave with us.

The health goals are there, and post-Balticon 2015, with the last memorial we have promised to throw for our P.G. is done. So many planned things were not done, but that was because I aimed too high. Those things are stashed away in the hopes we (SpecFicMedia.com) get to throw next year’s New Media Party.

Lookit, with multiple setbacks, thanks to the chaos of our rental home and such, I didn’t go as strong into grand-parenting as I’d hoped. But I can get moving a lot easier with the walker, and once I’m in motion, I keep going until I can’t anymore. Which is, admittedly, not very far, but as satisfying as I can get for now, newly dedicated to enlarge my route beyond the bedroom, first floor and home.

The walker has improved my motion to be less of a burden, and so my new friend stays so that I can try and keep up with all the wonder and surprise that the future holds.

 

 

Don’t Be “That Guy/Girl” at Balticon, M’kay?

Author: Vivid Muse  //  Category: Convention Attendance, Cool Links / Clicky Linky, Friends, No Whining, Too Long For Twitter

Balticon folks, please look over the Harassment Policy posted on the Baltimore Science Fiction Society site.

There have been issues in previous years, as most folks know. I like to think we all want to gather and have fun together with folks that genuinely share interests, but either alcohol or missed social cues can and have created issues in the past.

Sadly, not everyone realizes how their actions can be seen as harassment. Consider reading this over to ensure you don’t cause upset to your fellow con-goers AND/OR how to handle behavior you deem as harassment you see or experience.

Also, if you see someone giving cues that there are in need of “rescue” please consider giving a distraction and/or exit assist. If you are not comfortable, please summon assistance as instructed in the policy. (Yup, gonna make you click that link and read it. #CliffHanger

Of note:
Other people or their personal effects should not be touched–this includes hair, clothing, assistive devices, bags, and service animals–without an express invitation.

If physical contact is wished, express this verbally or with a friendly gesture, and do not proceed without a positive verbal or physical response.

Holding a hand out for a handshake and waiting for the other person to reciprocate is good example.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

After seeing hotel renovations last week, I say this can be a fantastic experience yet again as our community gathers together to share, learn, contribute and geek out with our dice out!