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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
Chooch and I have a wonderful opportunity and we will be moving at the end of this month to a new home we are making with Eldest/Naughty Bear/M and his wife, our daughter(-in-law), who is too cool to be believable. Seriously, she can even herd Eldest, it’s glorious!
I can’t express how excited I am to be able to see them so often and to be there when Little Bear comes home from the hospital, safe in their arms at the end of March.
We have not yet picked out the next place, but because hubby’s duty station was changed (again!) from Reston to DC, we are looking at MD for a shorter commute for Chooch.
And we’ll finally be able to live in a place that, going in the door, we can ensure accommodates my physical debilities / Health Blahs. It sucks not being able to see daylight (one window in our comfy basement) or go to the kitchen or ask others to let Kaylee out for potty breaks. We are being super picky about those little comforts in the hopes of streamlining things for everyone, after all.
I’m saddened to leave Ashburn after calling this home for three years and surviving oh, so much, while we battened down the hatches against sadness, illness and death and helped each other heal many owies. We happily shared our lives, laughter, experiences, company, and our children, with our former and remaining Housies. My ears will always ring with the remembered trusting giggles and madcap adventures.
I can’t imagine not seeing Jen’s Wee Flowers as often as we do, and to miss out on all the fun as we have watch them grow since summer of 2010. But I also know that our bonds and love will survive. We’ve been through too much and won’t allow our friendships to die now. I can’t wait until we gather again to continue our baking traditions after the move.
I’ll also miss her father, grumpy as he is, for I love him, too. He’s one of the few people that you always know EXACTLY where you stand with him and he doesn’t lie or bullshit. I love that in people. Honesty is the information I seek, not sugar-coated air. Oh, and for always letting our dog live after eating his stuff. Sandwiches, pizza slices, cheese, crackers and dentures. #DamnDog
And it’s a big deal for me that I’ll be living out of Virginia (barely) for the first time since 1987, when I moved here from Central Texas. The few family members that remain live near enough to visit, although we are still much farther from Chooch’s son than we’d hoped to be, with this move. We were shooting for the stars, but the employment situation where our youngest sweet son is makes it impossible, but only for now.
But straight ahead?
New roads, new home, new hearts under our roof, new chapter.
I’ve seen and heard some amazing kindnesses demonstrated in honor of Patrick (P.G.) Holyfield since his fight with cancer began and ended in August.
I’m hand-picking this one specific kindness from Tony Miller to share, because it’s loving, touching, thoughtful and dignified. It’s so Tony. It’s so Patrick G. Holyfield.
And it’s something anyone can do to pay tribute, too, if you ever feel the urge or miss him or another wonderful man on any given tie-appropriate occasion.
Now, for background, Tony is a wonderful guy, a member of my own little Con(vention) Family and someone I am always thrilled to see because of the fond memories and also because of the way P.G. introduced him for the first time, as a trusted friend. That carries a lot of weight with me, as P.G. knew.
If you are also a friend of Tony’s, you know that he has a new job –teaching! Tony, I’ve already sent my congratulations to you, but I don’t know if I told you that I hated you couldn’t be one of our kids’ teachers. Even with the harm you cause shrubbery, you are an amazing person that I think would be a wonderful person for future leaders to learn from. You never cease to amaze me by breaking down stereotypes of men in general, but in particular, men from the south, except for the one about them being chivalrous.
Lately, Tony shares a new treat with us — frequent (daily?) photos or a demonstration video of knot ties he has learned, as well as those he is crafting himself. It’s very spiffy and the knots he makes are almost as awesome as the expressions he makes*. I love the series and hope he continues it. I have sons that need to know these things!
As a long-time friend of P.G.’s. He recently named a special tie-knot after him. One that Tony himself created and then demonstrated how to do-it-yourself, by posting a video on Youtube.
This week begins three public events (see below) being held in honor of our dear dear friend, author and immensely lovable example of human kindness, P.G. Holyfield. And knowing Tony Miller and P.G.’s friendship to be genuine and reciprocal and stretching over years, this is overwhelmingly poignant and touching for this gal**, but as my own showing of respect for this and so many other kindnesses, I am hoping to master this knot myself for at least one of these events, using a scarf or ribbon. please take time to learn and wear this creation of PG’s longtime friend, Tony Miller, anytime you choose.
I’m personally asking for those interested to share in this tribute by posting pix of themselves wearing it. Please tag P.G. and Tony, as I’m sure they will bring comfort to those that are and will always be, missing P.G. and continuing to check his social media pages because, what else can you do?
At a later date, if enough pictures are sent donning the knot, they will be posted to the Memorial Page that will be polished and shared with content soon.
You will need to submit photos to BTW@SpecFicMedia.com to be included in that or any other public honoring of him.
Love you, Tony <3
*Most people look staged in similar poses, but Tony’s look genuinely awkward or humble. Not fake or staged, even if they are.
**Literally overwhelming. It’s taken me days to write and hit ‘Publish’ on this post.
Information on the Tributes:
Wednesday, 10/8 at 9pm – Online Vid Tribute from The Beyond the Wall crew:
On Wednesday, October 8th, 2014 at 9pm Eastern, the Beyond the Wall crew will be recording a live podcast show in which we will bid farewell to our good friend, P.G. Holyfield.
If you would like to attend one or both of those events, please check the links on this post atSpecFicMedia.com.
Of course, we understand that not everyone will be able to attend in person.
For so many, these podcasts are how they knew him.
So, the show on Wednesday the 8th will be a way for us, and for you, to express your feelings about this man, who brought so many people together.
We on the crew will be sharing our feelings and memories, but, we would also like to hear from you. If you have words, audio or video that you would like to share, please email it to us at BTW@SpecFicMedia.com.
Even if you have already sent something, please re-send it if you would like it to appear on this show. If you would like to send something that is just for family or any other private audience, please indicate this in your email.
And of course, if you are reading this too late or are just unable to put your feelings together before we record, please send anyways.
Also, please help us boost the signal, both for this announcement and the show event links that will follow, so that everyone that would like to can participate.
P.G. Holyfield founded a great community at SpecFicMedia, but now his watch has ended.
Our watch continues and so we will carry on our sacred duty, which is to talk about things we love – and people that we love – with all of you.
Thank you, from your friends at SpecFicMedia.com.
Saturday: A Casual Gathering and A Celebration of Life in Honor of Patrick G. Holyfield
October 11th from 6 pm – 10 pm – Come and go as you are available
Flying Saucer in Charlotte, NC
9605 N Tryon St Suite A, Charlotte, North Carolina 28262
Chooch and I will be hosting an informal gathering in Charlotte on Saturday, (October 11th), at The Flying Saucer. (It’s a craft brew honoring restaurant, that we’ve enjoyed with P.G. in the past.)
The official time is from 6 – 8 pm, when we are guaranteed use of the private room. If our numbers dwindle, we may move to a large table or we may be allowed to stay in the private room. They have been wonderfully accommodating and will do their best for us.
There will be self-pay dining and libation offerings in mid-price range
A brief video of memories from Chooch and I including some favorite Con(vention) Family will be available for viewing at any time. Otherwise, come as you are able as you arrive from other destinations or to spend the time together. We hope to highlight P.G., our friendship and shared world with him, in the podcasting and convention realms.
This will be a celebration of life, his life, and our con family experiences with him, but also a place for those that wish for grieving and remembrance, as well.
If you have ideas for this celebration of his life, please make pledges of time or assistance, please send to BTW@SpecFicMedia.com.
If you have pix or vid clips you love of PG, please send to BTW@SpecFicMedia.com, for possible inclusion in the video we are hoping to complete. (Time constraints.)
Also, if you are local and available to assist, please let me know at the above email to coordinate with needs for this unexpected gathering/weekend.
Sunday: The Memorial Service in honor of Patrick G. Holyfield
Sunday, at 12pm – Embassy Suites Banquet Room located at 4800 S. Tryon St (near Charlotte Douglas Airport–they will have shuttle service).
A special room block and rate have been reserved and is available until Oct. 5 at 4pm. Call the hotel at 704-527-8400 and use PHM as the code for the rate.
Please forward any written sentiments, photos, audio or video you would like to make a part of my tribute to me (Kim AKA The Trustee) at kim@pghct.org.
Thank you so much for your thoughts and contributions. I truly look forward to seeing or hearing from all of you, either next week or in the future.
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.
Note: There were so many tears, hugs and things happened that the trip is a haze, other than overwhelming and unending kindness, that I am literally relying on photos, as is true for all of August and most of September. I’m trying to make my way through it, so bear with me as I will be editing as I am better able to fill in my timeline.
The Original Plan
Earlier this year, after Chooch, P.G. and I decided again against attending Dragon*Con this year and planned instead to spend a frugal and fun weekend together again, and planned for all (as possible) future Labor Day weekends, whether we could swing Dragon*Con or not. Same as Balticon would forever be our “home con(vention). Roomies for Life and all that.
We knew we could re-consider, same as he had the year before, possibly making the drive to Hotlanta if we made the coveted “Short List” of actual nominees for the Parsec Awards.
Then P.G. was feeling sick in July.
Somewhere around there we found out we made had indeed made the short list for both our P.G.-created podcasts, SpecFicMedia.com Presents: Beyond the Wall, A Game of Thrones Podcast, as well as SFM.com Presents: Consumption (discussing all entertainment media we were consuming).
Obviously, Dragon*Con was the last thing on our mind, so when doing our battle planning for his fight against cancer, which included physical and emotional support, we included in our plans a cathartic and community-building opportunity. Blogs, video podcasts, Kickstarter, books, music, games, everything was possible when you had so little to lose.
And then, before it could even sink in that he had cancer – OUR Patrick?!?! Are you fucking KIDDING me?!?! – and *poof* he was gone.
We were then asked by many friends and peers and members of P.G’s family to please go and honor him at Dragon*Con. And while not having any desire to be drenched in sadness, but in desperate need of seeing people that understood better what the Con Family loss actually was. People that understood how we were feeling, in the weird no-family-land of our Con Family, and they would be there. They said they had hugs awaiting us. If you know me, I can’t resist a hug. Especially in days like these.
The Revised Plan
So, we plotted it out. Originally, Kim, Chooch and I were to drive there on Sunday, attend the Parsec Awards, possibly stay for dinner with friends and drive home the same night.
The Again Revised Plan
Learning of the fundraising tribute event Scott Sigler and AB Kovacs were planning for P.G. at Dragon Con in the Hilton Hotel bar on Saturday is what got Chooch and I to Atlanta and Dragon*Con a full day earlier than planned, with the tremendous kindnesses and free beds, thanks to the Cosmically Sainted folks at Cosmoquest, which is what gave us the ability to make the long trek on no sleep and adrenaline long run out. Pamela Gay and her esteemed peers and staff are the very best of people.
The Event
Mr. Sigler spoke of P.G. Holyfield in a way that would have had him gruffly mumbling a self-deprecating comment and pointing out someone else as being more deserving. Because that’s how P.G. rolled. Always humble about how awesome he was to oh, so very many of us. I have proof in my inbox of just how awesome that an impact he had on folks, so much so that I’m struggling to pull it all together in time for the memorial weekend, planned October 11th and 12th, right around the corner.
One of the best parts was the “surprise” that Ms. Kovacs planned for Sigler with — a surprise gathering inspired of costumed fans of his galactic football book series, “The Rookie,” which I know someone will correct if I got details wrong.
The Result
People came in lovingly hand made, full galactic football league costumes, and many faces I feared seeing grief on were wearing costumes that made the whole thing even more surreal. But it was immensely easier for me to see their pain and hold their hands until we both felt better.
Some that came for that portion, knew Patrick and some didn’t, but they lifted a drink anyways, as Scott Sigler commanded.
His challenge was to make an additional donation based on how many showed up to toast in tribute* to the Patrick G. Holyfield Children’s Trust. He donated $5 per Toaster (not Cylon, the people that lifted a glass.) and $6 if they wore a hat like PG’s, which was a signature look for Patrick in all the areas of his life, I have discovered.
And Sigler blew me away with the resulting donation amount, based on 69 people, gathered in person to pay tribute. Seriously, the trusted toast counter ( John Cmar) said it and I had to roll my eyes. I mean, really?! LOL, yes, really.
The resulting donation? I don’t even think there were that many people in the entire restaurant. But that’s how Sigler rolls.**
Our own pictures to follow, I have hundreds to sort, still. There are a few posted in my Flickr already, username Vivid Muse.
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* with that damned Tuaca, Patrick McLean
** In my heart forever, that Scott Sigler is. Even though most of his books scare me too much to read and the rest are sports-ball in space, somehow. The sports-ball part was a major hurdle, but it’s done. He’s in. Done deal.
And AB, aka A Real Girl, was already there. AND she told my way my fave story of Sigler’s will never be published.
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.
