Brace yourselves, kittens, Chooch has been officially notified of his reassignment to Albuquerque, NM, and his start date is October 2nd!!! The move will get us so much closer to Chooch’s 16 y.o. Son. (We haven’t made it to Cali yet, but we’re finally getting closer!) Added bonus? Along with Chooch’s Son, his Mom, Dad, Step-Mom, Sister and her Husband all live in the same area! Where we’ll live will actually be close enough for a road trip to soooo many beloved family members (and their babies!), including our own GrandSon Little Bear! We are so very happy, life’s gonna get so cute again! It should be a less-stressful position for Chooch, that we feel more fulfilling and less draining., and by all accounts (incl doctors), the region would hopefully improve how I feel with my health blahs. We don’t plan on living there forever, but we’re so very excited for this new adventure! Locals, we’re moving in mid to late September, which is VERY soon. We want to see as many people as we can while we prep to move and continue to purge down our items. If you want to gather before we move, please let me know. I’m hoping to do little gatherings to see as many as possible.
It’s a very big change, but with our resident middle son and our pup Kaylee going with us, we are BEYOND excited at this new adventure!
I got this in a fortune cookie the night before we got the big news!
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 thatI’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.
*For those that may be now considering a wheelchair for travel, I’m writing another post with my views in the next few days.
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.)
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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.
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.
I returned to my longtime neurologist, since he has all the documentation of everything involving my disabilities, having given up on hope of body pain relief via Western medicine. I still visit her to check in and track disease progression, but my focus is on the migraines that leave me completely batty at times.
After discussing everything and our Dr. P started me on a new daily medication, with instructions to double it after 10 days, to what would be my maximum safe dosage range. It’s one he’d put off using in the past because of concerns on how it would impact cardiac issues. I had worse migraines than before and he dropped me back down to the initial half dose and wrote another, new prescription. The last he has to offer, in his bag of tricks. I am giving myself a lengthy wean down on it before starting the new one. The side effects impact every person I live with, after all, and these are mood-impacting medications.
He also suggested Botox injections for migraine relief. A months-long panic attack ensued, in spite of knowing it’s safe. (No, I won’t look younger, the injection sites are primarily on the scalp and down the back of the neck.)
The needles are like acupuncture needles and it’s done in the office, it’s such a mild treatment. None of this reassures me because I keep wondering why it’s sane in the year 2015 to inject botulism into 31 locations on my head, every 4 months. If insurance covers it and if it works. Good news? Can’t make me more stupider! Hubby promises my skull can’t be penetrated and my brain injected with botulism. He hasn’t led me astray yet.
As of now, I’m about to start the last new daily and for some reason remaining on the half-dose of the last daily. Sure, I’m hopeful, but am again suffering from hope fatigue.
I mean, do I have to get my hopes up each and every time and pray they aren’t dashed as I more slowly realize that this solution is as ineffective or toxic as the last however many dozen? Can I just skip that part as I swallow it down and await results? I’m utterly exhausted from being hopeful on my medical stuff and I’d rather put it to use elsewhere in my life.
If it does help, trust me, the world will know it. I just don’t have the energy to get super hopeful and excited with so many other things in the world. Pain is pain, and it isn’t (knock on wood) deadly yet, so I’ll just save my hope for something else and keep a keen eye on the results before I get excited.
I am super annoyed for the five years of delays to dealing with *my* prior health concerns/goals.
And I am super tired of being a fucking lab rat/guinea pig.
And I am super motivating myself to take major steps on the breast cancer risk assessment. There, I’ve said it out loud, so I have to do it.
Countdown to our grandson Little Bear’s arrival: 11-ish days and counting! My phone app says he’s the size of a watermelon! Our poor daughter(-in-law) is completely overtaken by him and I can’t wait to offer to give her a break on carrying him all by herself, once he’s born and they’re ready to share.
I’ve still been chasing a return to normal health and a normal life for the last 5 years. What started out as debilitating flu symptoms, which after much testing, led to a diagnosis of Vestibular Migraines (migraines, near-constant dizziness, fatigue, memory and comprehension/cognitive problems and HIGHLY entertaining neurological problems). I want nothing more to be useful again, both in income and employment satisfaction, running and exercise, parenting up to my standards, podcasting and public speaking, putting creations into the world, and just living more fully.
It was a shock, especially as swiftly as onset incapacitated me, but in hindsight, I’d been battling my headaches and other symptoms while minimizing their importance for years. They were nothing compared to what my ex-husband’s family experienced with their hereditary migraine issues, so who was I to complain? The frequency even triggered a halt to using Tylenol products because of their liver damaging potential, and I’m still not allowed to take them.
Five years later, I have a mixed bag of chronic illnesses, having added fibromyalgia, tmj, etc., and have been chasing pain relief since November of 2009. Onset was a spectrum of symptoms from what was diagnosed as vestibular migraines and as I learned to adapt to them, symptoms of tmj and fibromyalgia became the focus of attention. When nearly all of of my 18 tender points, if not trigger points, are firing off pain, it’s easy to understand why I was chasing it as opposed to the migraines I’d been receiving treatment for almost 3 years for from my respected Neurologist, Dr. P.
I’d been juggling both, with nothing more from my neurologist at one point than break-through migraine pain management continuing, until last year. Dr. P. told me he couldn’t help me with my migraines until my Rheumatologist and I had my Fibro under control without opiods, which are migraine triggers.
He was concerned about possible interactions and took away my final tier of pain management – a pill that lets me sleep, no matter how intense the pain. That pill kept me sane for many years, just by being in my possession. It was reassuring because if the pain became unbearable, I would still be able to relieve it through deep sleep.
Many times, I would awake rested without the migraine. I rarely took it, as it could be risky for me to use otherwise, since I would have taken other medications up to that point. Again, just a reassuring pat would lower my anxiety and panic response, and at times, was calming as a valium.
And then, just, gone. It was a scary adjustment, but not earth-shattering as other life issues have been pressing in as well. I focused all my efforts on finding something with her that would work, trying a variety of medications and having some gnarly reactions to all of them.
Then, end of last year, I reported to my Rheumatologist the results of the latest pain cocktail, and she told me that she doesn’t have any other options to try on me.
Now I’ve redoubled my efforts with my Neurologist, with only a handful of options left.
I realize these health issues are nothing compared to health issues of others that I know or don’t know. But I grant myself the same kindness I do everyone else — a person’s pain shouldn’t be compared from one person to the next because we are all traveling with our own sadness, regardless of the reason.
It’s not a competition, this is me speaking about me, in a place I feel safe to speak, humbly, before I forget it.
After our hair donations yesterday, I tried to figure out how to write about it. I knew that to some, it would sound weird, no matter what, so after a lot of revisions, I’m simply writing it as a letter to our best friend, P.G. Holyfield. We lost him last August to a horrifyingly fast-growing and hidden cancer. I’ve probably written it poorly and with bad punctuation or pronouns, but I don’t have time to take another pass.
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Chooch and I found it to be complete and total bullshit that you were diagnosed with cancer and were going to lose your gorgeous hair to chemo. The only form of rebellion against it was to join you in baldness. How better to show you that we all needed you to fight? That you were worthy of the love and respect that you ended up showered with by family, friends, coworkers, peers and fans.
So, surprise, P.G., we decided to shave our heads whenever you were ready to shave yours. We decided it even before you had your first chemo treatment and were due another one on Friday, our arrival date. And, as only he can, Chooch even thought up a way that was pretty cool to do it.
It was going to be easy, really, since we already had the plan for me to be your goofy, pig-tailed chemo buddy, so Kim could still work and none of us would worry over you by yourself at home. We’d simply planned for me to be disabled in Charlotte instead of Ashburn. At the very least, I would be with you and would know when your hair started to fall out and when we’d offer our solidarity.
As an aside, I delighted in the chance to be truly useful for the first time in five years. My inability to work meant I could give you companionship. You were still so strong that we just knew you wouldn’t need physical help, so it was fine that I couldn’t provide it. I’d just someone in the house, in case you suddenly didn’t feel well.
And while we thought it too soon for you to want to shave your gorgeous hair, we wanted to be ready for whenever it you chose to shave it. By us doing it too, we hoped to take the sadness and empower you with it. Clippers and a wig awaited us in my suitcase during those days as we altered our drive from Charlotte to Durham, to meet you where you were getting a second opinion.
I can’t even remember if it was Chooch or I who first brought up shaving our heads with you. But, as was so true with all four of us, the question was answered before it was asked. To hell with vanity, we needed you to know how much we wanted you to fight and that we were committed to your fight, too. Roomies for Life, and all that. And since you’d always complimented our hair and the length, and with yours getting long enough that you were becoming pleased with it, it was the obvious rallying point for us in the days approaching what ended up being our last drive to visit you and Kim.
We quickly decided not to bring it up, because, who the hell cared after the second opinion? Shaving it then would have just taken us time away from you and possibly upset you. And there were so many more important things to say and do for you and your family and friends.
I kept my hair in pigtails 5 or so days instead, at your side with wonderful people that love you so much. Thanks again for letting us be there with you and them. Peace would be much more difficult to find without knowing just how overwhelmingly smothered in love you were during your last days.
We decided to wait to shave our heads until after your memorial service, 2 months later. It just seemed not to have been cool to do. And those months packed a punch with serious grief processing over my Mom’s death years before, while two other of our family members were/had been battling cancer. Putting it off was fine, because it just meant our donations were growing longer.
The wig stayed in my suitcase through October. I liked having it close, back then. It was a tangible representation of what we would have done for you, all the while praying our plans might turn sadness into laughter.
The wig was a cartoon-y blue, because it’s Chooch’s favorite color and I thought it was yours, too. But I’d only need it if you let us shave it. You’d have had veto power, natch. I worried my bald and ginormous pumpkin head might be upsetting, so I quickly ordered it.
But now, winter hits hard enough to make my hands and other joints more and more miserable. Caring for my long thick hair became more and more problematic. Chooch and I were sure we still wanted cut our hair, but as a donation instead.
We started debating bald vs. short styles and ones that would give the most length to the charity we chose. I feared that shaving bald would just make me sad, as a constant reminder of your loss. Chooch was on the fence and considering shaving down to bald to honor you as we initially planned. He understood that I couldn’t go there because I already fear my reflection because of the resemblance to my Mom and I didn’t want a bald headed reminder of her during her cancer battles every time I looked in the mirror.
And truthfully, we didn’t think a hair cut was a big deal, especially since I’d already been plotting a cut similar to J.R. Blackwell’s after Balticon last year to ease the burden of styling my hair, which you agreed was brilliant. And, as Nutty mentioned, the first few years of Chooch and I going to Balticon were years we had short hair.
In our growing excitement, we shared our plans with various friends and family. They were not very well received and nearly every person seemed to advise against it. We decided to wait a little longer so that folks that love you or love us would know it wasn’t spontaneous or a crazed expression of grief. It’s just a hair donation and it’s done a lot. In fact, there was literally one being done by another stylist in the salon at the same time we were doing ours.
We’ve been looking forward to doing it for 6 or 7 months now, considered tons of hairstyles and off we went to our one and only stylist, Bree, at Rain in Ashburn, VA. It was nothing to donate my hair to the charity in your name, P.G., other than an honor.
You made the length of my hair so immediately meaningless, compared to all that you faced as well as how your loss cut so many so deeply. The shearing brought us much joy, and I think, to Bree as well, as we’ve been discussing a shorter cut for years. She really enjoyed that we insisted that only she could do the transformation for us, especially since she’d been hearing our tales before and after returning from our shenanigans.
So, as another winter storm bore down on us and with our grandson approximately 42 days away from arriving, we drove around three hours to keep our scheduled appointment. You know us and our love of road trips. And I decided that if our friends know us, they’ll trust us. The crazy lady time passed awhile ago. I am fine. Chooch is fine. We are fine.
Thank you for inspiring me to cut the hair that hurts too much to maintain, in spite of how many compliments I got or the threats I’d get when I’d talk about cutting it off. Jokingly, of course, but there was some pressure, too.
Lookit, our grandson, Codename: Little Bear, arrives soon and I’d rather snuggle with him instead of wrangling all that hair. Besides, it’s only a haircut, which is only one drop in an ocean of tiny kindnesses we all grant in this world. And I vowed to pay it forward every chance I’m able.
I will miss you, always. Know that this one remains grateful for the friendship that healed so many broken things in me.
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Pix to prove it happened. More to come when there’s time for styling, we were literally racing a snowstorm and this was a recovery day.
At this point, I’m disgusted with Western medicine. Not because of the limitations of what they can do, they have miraculous abilities, and is a marvel, in my mind. My beef is that they will only consider the Next Pill. Which I have to take other pills to counter-act the side effects of.
Shenanigans.
After all this time, I know that, at least in my situation, everything hinges on my whole body health. Getting those to work together are key.
In fact, I have never in my life been more aware, as the emotional aspects of my recent experiences have caused a massive increase in physical pain and complications. And while studies look promising for future Fibromyalgia treatment, improvements for patients are years away, at best. Big Pharma’s gotta keep the revenue coming in, after all, and a cure impacts that.
After nearly 5 years, we’ve exhausted what we know is out there now, but wait to see what the Rheumatologist says. I’m just grateful my Health Blahs are pain and neuro stuff and not cancer. I’ll live and be grateful for whatever condition I’m in, until I’m not. Pain sucks, yes, but I must diminish it to myself. I will not focus on it and expound on it more than necessary as a journal, when I’m already so useless most of the time. I’m using all the strength I have to ignore and overcome the pain. Believe me or don’t, I choose not to wallow in what’s so broken in me right now.
Part of my expanding practices for relief, I’ve been considering “juicing” for a couple years now, and thanks to my sister, I have a smoothie book, from the Nutribullet company. I’m only using a basic blender for now, until I decide if I want something small and convenient (possibly the bullet) or one with multiple purposes (Ninja-type blender), a la Alton Brown’s belief in never owning any kitchen tool that only does ONE thing.
I’ve already decided against using an actual juicer, which beautifully strips out all the peels and cores and seeds, but it also pulls out good fiber, which annoys me to no end. They work great, the fruit juice tastes amazing, with no texture, just juice. But since I need meal replacement instead of simply vitamin boosting, I need fiber in there, too.
I’ve been studying healthy diets for a long time. I know that I need fiber to scrub toxins out of my system, but I’m way to thrifty to tolerate dumping out fiber and then buying more to consume. Plus, I need something VERY easy to clean and those big ol’ Breville’s just look to tricksy for me to use and clean with my painful hands and poor dexterity.
On a whim a several months ago, I went through my cupboards and fridge and put together a healthy shake that was tolerable. I drank it, but I haven’t made another until this week, other than “natural” plant-based protein shakes, which I’ve had to do for years to maintain nutritional intake. I knew I would try again, but went back to Amazon reviews and blog articles and occasional conversations with experienced folks.
I know so many incorporating them, I can’t even remember who all I talked to, besides our spectacular friend (and hair stylist) and friends Jett and Chad, who have been doing it for awhile now, too. Plus, I’d sampled half a dozen different smoothies by then and enjoyed them. These are definitely not the nasty smoothies a relative once made when visiting about 15 years ago.
For that one, I took my two polite drinks, and followed the lead of another, by nourishing the shrubs with them since we couldn’t tolerate (as adults and parents) the flavor or texture or the taste of evil on our tongues OR find anyone else willing to drink them. (We did all of that out of sight, no worries. Mama raised me right!) In hindsight, since it tasted like we were drinking liquefied branches and dirt, it was the perfect spot. Circle of life and what-not.
My physical needs require them now. Many days, I am unable to climb the stairs to the kitchen. We have a mini-fridge/freezer (Food-only for years, no room for beer!), a microwave and kettle in our basement apartment, which allows me to stockpile necessaries so I don’t run on zero calories before Chooch gets home from work with sustenance. But many days, the ability of cooking an affordable dinner for us, let alone breakfast and lunch for myself, is simply not possible and is sometimes dangerous (burns, cuts, spills, broken things).
And these fruit/veggie smoothies are even helping another Fibro issue I have when eating, which is a type of throat constriction. It rarely occurs when drinking or breathing, only when eating solid food. It’s extremely painful, and in my entire life has only happened a handful of times with liquids or shakes, as opposed a a handful of times a day, with solid foods.) The pre-made nutrition shakes helped as well, but are expensive and full of chemicals and Glob-knows-what. Since another health goal is to eat more natural and as few processed foods as possible and I can’t “go natural” with Ensure’s mystery chemicals, so I’m making my own liquid nutrition now.
So, now on Day 3 (in a row!) of incorporating at least one crazily healthy, Glob knows how it will taste, fruit and veggie smoothie. I’m hopeful that I can make this a daily habit in the near future. If I actually stick with it, in a few weeks, I’m going to increase it to 2 meal replacement smoothies a day, since that’s usually the minimum meals/snacks I skip. Each one I make is 2 servings, so for every time I make one, I have a spare for the next meal. I’ve had the second serving of the one I made yesterday already.
As for taste, because I’m being cautious in my selections for tastiness and longer commitment and it may be more limiting than I predict option-wise, all I can say is yummmm… They do indeed taste better than they look.
The spinach makes it look like baby poo, but tastes like nothing and the color is the only detectable thing about it. The sweetness from the carrot and fruit easily mask it. Since I’m also adding protein powder, that helps, too, I’m sure. I have trouble tasting it over the fruit, I’m sure it’s doing some masking with the vanilla flavor, but it’s yummy so I’m not messing with it.
Ingredients:
2 handfuls of baby spinach, a fatty bo-batty carrot, a large banana, peeled and seedless mandarin orange and water (as much as needed to get the thickness I like). Also some vanilla protein powder and some almonds.
All fresh and gross-looking and weird textured and surprisingly tasty, even on Day 2, in truth.
Results on third day:
Nausea is more tolerable now, but the lack of appetite is still there. I still think that is most likely masked by the pain meds. But I’ll continue forcing myself back on to an eating schedule to avoid the pitfalls of things that taste good, rather than things that taste like ass (also a medication side effect), and the nausea aspect has me going this route.
Getting in so many fresh and raw fruits and vegetables every day, even though pulverized, has me at least thinking I feel better. There is certainly better nutrition since I’ve started, and it’s carried into other choices. I’m definitely keeping the fiber aspect and am just waiting until mid-November to buy a new machine, if I can’t ever find my blender. I’d love recommends on them if anyone has an opinion. I’m leaning towards the Ninja blender, as a friend just said she loves hers.
Two changes:
I gotta start with nuts in the blender first, cause it’s damned weird chewing bits from a smoothie.
I want to find a natural protein source that is unflavored.
Saturday, September 20th, heading to friend's wedding celebration. #RallyForBelovedsWheneverPossible
New medication FAIL and I’m back to square one on Fibromyalgia relief and my neurologist won’t give me anything for the migraines. The Fibro meds worsen them and they also increase the frequency of them. Yes, he was right to, but now I am back to periods of time where I’m losing my mind a bit, to the persistent pain. I can’t work, watch tv, cook, bear light or noise and frequently the pain itself is so bad I can’t sleep. Over the last several years, having Soma was one of the very few thing that kept me sane and away from “dark places.” I could end the pain. I would be knocked out for half a day and useless for the other half, but the pain would stop for a little while. Long enough, to recharge for the next round.
I halted the latest medication last week, Cymbalta. The side effects were, let’s say, far ranging and intense. As bad or worse than the Nucynta, which I didn’t think would be possible. I’m not trying to be melodramatic, but the resulting feeling was akin to post-chemotherapy. Even when taking into account what August and September were for me both emotionally and physically, with my emotional/neuro triggers wreaking havoc on my physical pain and fatigue and nausea and dizziness and migraines, blah, blah, blah.
I had continued on the new meds, and doubled it as instructed. Last week or so, I halted it, because I cannot keep pumping that poison into my body when it’s not helping any of my symptoms and worsening others to the point of being unable to leave bed for anything but the bathroom, some days.
When I see my Rheumatologist again and make the next plan, I will follow-up again with the Neuro to look at migraine relief. I trust him, as he’s done right by me from the start. Even when he pissed me off by taking away my “nuclear option” for maddening and dark days of pain that won’t release, he only did it because I could die if I don’t take precautions on what I mix them with, so I really shouldn’t be mad at him. But I can’t be mad at my faulty body with any positive result, so I’ll be mad at him for just a bit longer before I cave in to logic.
But my latest medication attempt is done.
So, my vestibular migraines, fibromyalgia, tmj, other personal issues and the mixed bag of hilariously painful symptoms remain. It’s all worsened over the last six months, primarily due to medication changes and higher than normal stress and loss with continued worry on other fronts.
Or maybe it’s because I haven’t hit what Chooch has me referring to as “rock bottom” on my pain level. Meaning, the Fibro pain is at some point supposed to stop increasing, and then that’s what my expected pain level should be for the rest of my life. Unless it gets worse again. It seems I haven’t hit it yet, sadly, and winter is coming, along with stiff and jagged joints and less freedom of movement outside. Accommodations are being made to make it more comfortable and to hopefully be useful, too, even if just briefly.
But for the blessings of time with dear friends and family (my sister’s surgery went great and she’s recovering at the speed of light!!!!); three devastatingly handsome sons; an ironically delayed, yet glorious wedding for our oldest son; two new babies born PLUS a grandbaby on the way? I would’ve surely gone mad. Praise Baby Jesus for (evilsssssessssss) Facebook and the ability to see pictures of the faces so far away that are so deep in my heart. I still don’t trust ya, but thanks, Zucksy.
As my body is recovering as that nasty medication leaves my body, I don’t know if there are any medications left to try.
This one was put off for years as others were explored. When you know that a liver is a terrible thing to lose to prescription medication, you worry about how much they think is “safe enough” to pump into me with some of the fierce reactions I have. But there is much to do and many things to prepare for, so the search continues.
I’ve decided to attempt to incorporate the least stressful form of martial arts or yoga, depending on what’s available to me, once I’m able to regain some flexibility and strength. Even modified for my debilities, I must regain movement, regardless of the pain. An object in motion, stays in motion, after all. I had hoped to leap into a friend’s Krav Maga class, but that would be madness, I must now concede.
I’ll be starting smaller with yoga or tai chi via DVD initially, just until I’m more stable on my feet trying for balance. It’s not a strong suit for most dizzy people.
And just I’m hitting the Fifth anniversary of when the debilities became debilitating, but I also seem to approaching what appears to be the end of the road on what Western medicine has for me to try.
So all you skeptics are going to get to have loads of future fun at my expense as I delve further into dietary supplements, alternative medicine, meditation and regimented schedule. I do better when I am free to be on a tight schedule, so I’m attempting that in coming months. Hopefully, my memory will help me to set the reminders for it to be more effective. *crosses fingers*
I’m taking on some personal challenges after having watch a remarkable person fight death with literally every cell in his body and more strength, will, soul and courage believable. Some projects I’m dreaming of will get finished and some won’t.
I’m figuring out my limitations and working around them instead of hiding from them. The process will be messy and I’m going to do stuff wrong and poorly and ineffectively and the results will either be brazenly unpolished or over-wrought.
For this disabled and wander-lusting shut-in, there are necessary steps before attempting a “never give up,” assessment to see if I can overcome the necessaries to leave the house. (HA! at the notion that it’s a choice for EVERYONE, by the way.)
I have three rules, particularly important when in troubled times:
Clean clothes – No negotiations. Well-kept armour is key when dealing with social anxiety and neurological triggers.
Wash that ass, every day – Grants a minimum of +3 to Confidence and major increase to your Social Anxiety, due to toxic aura. (Plus, snuggling options for later.) Required: If you’re doing math to decide if you need a shower, the answer is always YES. NOW. (F*** the Con Rules. Wash. Your. Ass.) Remember: Some of us have overpowering olfactory senses and ass stank physically impacts me and likely many others, even if you don’t detect an odor. It’s not you, it’s your smell, kinda thing going on there. (This is typically only an issue on Dragon*Con elevators, because people don’t want to miss a second of the weekend.)
If you like to set your hair or wear make-up, wear your preferred hairstyle, warpaint and/or chapeau. EVERY time. Depending on level of effort, this step grants a +2 to +5 to Confidence and -3 to -5 well-intentioned questioners asking about your health when you are fighting super hard just to be there, but want to forget it and have fun. (At least 75% of the time, I apply mine in the car on the way, with uneven eyeliner and frequently forgotten mascara as a result and reward. #InMotion is better than #Still , in my book.)
Now that I’ve identified it, time to assess it and wrangle it. Life is short, as I’m so constantly reminded, and I don’t have time to waste on time-wasting issues.
Baby steps to the bedroom door…
Baby steps to laundry room…
Baby steps to the top of the stairs…
Grateful to be awake and well enough to type, for now. Happy Monday, beyotches.
In that vein, I’m sharing a song that’s been haunting me for months. It incorporates a lot of things/people/events/place, from Dragon*Con’s countless glass raisings in honor of fallen “brother,” Patrick G. Holyfield to snuggling with his Eldest Flower moments after his passing, including fist bumps over punched cake and gummy bears. And from hearing dear friend Nicole’s perfect way of saying “Noisy” when describing herself (TMI: it’s what I hear in place of “loud” in the actual lyrics.) AND the mix of costumes, tears, laughter, embraces, reaching out to build connections where there were none, simply because of the sincere kindness and peace they granted him as he was dying. And as he was trying to come to terms with it.
Also, I’m going to start linking through our affiliate store when I drop the little audio tidbits in, as soon as Chooch “Makes it so.” This is one of the few things I actually do, so the needs of our growing family (Grand Baby on the way) and greatly increasing expenses, I’m going to start trying to find ways to have money come in the door. Or figure out a road trip to see everyone before I hop on an ice floe near my birthplace, with the aurora borealis lighting up the sky. Hahaha, but actually, what a way to go!
The donate button is here on the site and I’m trying to figure out how to create income in ways that tangibly give and receive.
For now, just really really listen. You know if you are one of my achingly beloved “dirty little freaks,” as some may have been made to feel like during your years of not perfectly fitting in to societal norms. It’s one of the reasons con families exist. <3
Video link in youtube PLEASE note that this is not the clean version:
Dear friend Nobilis Reed shared this photo on Facebook, with his comment, “I know too many people this applies to, alas.”
But my personal fave is missing: “Did you get a diagnosis, yet?”
Yet? Yet?
I’ve had them for years. Literally. It is one month before the fifth anniversary of when my body first got down so low that I couldn’t overcome all that was wrong with me. Five fucking years. I know it’s not as long as some, but it’s been a lifetime of limitations and poor decisions based on poor assessments and lots of regrets* in those five years.
The number grows as more issues are identified. I had no idea that all the stuff I’ve been working around my whole life wasn’t normal, so I burned myself out early trying to keep up. Note: no matter what you go to a doctor with, if you are overweight, that is the first diagnoses – with the instruction to stop being fat. It took a total physical and neurological collapse, but no, fat’s not the only thing wrong here.
Maybe when folks don’t get a known answer, and how you’ll be cured of “what’s wrong with you,” and with all they have to manage in their own lives, they just don’t retain it. It just gets a little old re-explaining things to the same faces over and over, saying the same things that they clearly didn’t retain, through no intended harm at all. What doesn’t have a clear villain, doesn’t exist, maybe?
The biggest things wrong with me are:
vestibular migraines (neuro – pain, dizziness, fatigue, nausea, light-headed);
neurocardiogenic syncope (neuro + cardiac – I’m likely to faint when under physical or emotional stressors);
fibromyalgia (neuro and constant physical pain, body-wide),
tmj (jaw joints, makes talking, eating, existing more difficult);
a mixed-bag of symptoms that I don’t know where to attribute anymore (neuro – comprehension, memory, cognitive, tremors, stutters, twitches, loss of control of facial muscles, sleep interruptions, and yeesh, more.)
I don’t get a cure, I get chronic pain and just-as-debilitating treatments for my disabilities. (Note: I like to call them my No-Longer abilities. It reminds me that I wasn’t always broken and of a life with more usefulness.)
But I also don’t get a death sentence.
So I’m taking it as a WIN and reminding those that don’t get what’s wrong with me, that there’s something that prevents me from doing all I want to and used to do for loved ones.
It’s not you not being loved, it’s me struggling with how to show love, in current days. Just staying sane is one of my fave accomplishments to date.
*Regrets. Yes, I have them. I don’t fear them. I embrace them to learn from them. I accept them as a way to prevent foolish mistakes in the future, through blindness to my past mistakes. I dunno if it works or not, but it’s my way.
So, the point? THINK before you speak. There are no guarantees in life and I didn’t used to be disabled NOR did I have clear warning that it was coming. (I have been having doctor’s appointments for some of these issues since I was a teenager, and always told that everything was fine. Well, it wasn’t.)
My reality now is that I can’t do physical. I can’t do mental. I get ideas but cannot execute them. I struggle with finding usefulness, because others’ expectations of me are too high.
And it’s not a competition either. Everyone has stuff. This is just part of mine.
