My awesome friend got me a book of writing prompts since I’ve had writer’s block for what feels like forever and I decided to adapt one prompt to make a blog post. It’s about time to have something fun and totally not about health, politics, or anything serious on here. 😊
If you’re a frequent reader, you know that I’m considered a “death positive” person (check out Ask a Mortician if you’d like info about that). What you might not know is that I can totally make one of my best friends sick to his stomach just by mentioning some of the YouTube/Patreon channels I follow. *grin* Spaulding Decon are absolute heroes in my opinion, but decomp and hoarding cleanup is something most people can’t stomach thinking about. These amazing people compassionately take care of biohazards and emphasize that you can’t judge a situation or person because you don’t know how life was for them. They are amazing about raising awareness for suicide prevention (kind of goes hand in hand with some decomps, but they go above and beyond to share their stories and encourage those with suicidal ideation to seek help with even providing the Prevention hotline each time).
Along a similar trail, I dress up a fake skull. Yep, all year round. LOL Skelly gets a change or new mask every few months, and shows off right on top of the entertainment center speaker in the living room. *grin* Instead of the usual decorated dominoes I get, this time I indulged in an elaborate Venetian masquerade mask with a gorgeous, handmade, laser-cut, scrolling lace work butterfly wing that stands at least 6 inches above the right eye. Until now she frequently rocked the glittery hot pink and black domino mask from my adoption motherhood party. If you’re going to do something unique, you should definitely go all out. *grin*
I wasn’t just the “mad scientist” behind Georgia’s Pampering/Bath & Body Products. I know just enough about chemistry, coupled with too much interest in what I may create without thinking ahead to verify the safety of things, that I’ve been dangerous a few times. The worst is probably when I accidentally made mustard gas. 🤦🏻♀️ LOL
My specialist is convinced I buy pot and am afraid to tell him, since it’s not legal here yet (although I admittedly support and donate to the Medicinal Marijuana lobbying program *laugh*). It’s well known that it’s very effective, in certain strains, to help Fibromyalgia. I think the tally is now up to six times he’s tried to get me to admit it. I admitted to making a synthetic version, since it’s not exactly rocket science to look at the chemical formula and then use Marinol (generic synthetic prescription cannabis) combined with OTC oral CBD (I totally recommend Koi if you’re looking for a good oil). Take the pill and for a more pleasant experience, put some drops of flavoring under your tongue first, before you put the drops of CBD, and let them get absorbed. Right now Black Series Apple Pie is my favorite and totally prevents that grassy taste that some CBDs have. I totally am not advocating that you do it, please talk to your doctor first if you’re on Marinol in a non-medicinal state and want to try this, and all the other jazz that removes any liability. I just find it really amusing to have my doctor picturing fun-sized me in some alley in the city buying a bit so I can go roll some at home. It was even more amusing when he turned and said “out of all of my patients, of course you’d be the one to figure out how to make a synthetic version”. *grin* Probably ties into the mad scientist part of my personality.
I actually won three Presidential awards before I turned 18. One was for Education (eh, we all know I fly my nerd flag high), while the other two were for “Literary Excellence”, which is just a fancy way of saying “Way to go on writing some good poetry”. *laugh* I have a variety of smaller writing awards, along with an unfulfilled song writing contract and a novel I have never finished, and even got to include a poem about domestic abuse awareness on “The World’s Largest Peace Poem”, which has writing from a ton of people, but I love that there are pieces by The Dalai Lama on it. I competed at two poetry conventions, but the ability to be included on there still makes me smile, especially since it wasn’t just your average world peace. It’s about the violence hidden behind closed doors and whispered about, but seldom acknowledged. When I feel like I haven’t accomplished much in life due to becoming a Spoonie, that moment in life gets me all choked up.
I can be very bold and vulnerable when I write, but I’m incredibly shy when I talk to people or I am around others. A massive introvert in person, although “a bossy bit of goods” if we become close. *grin* I can write about the grittiest details of my life, yet I turn beet red and talk softer and softer when I try to get the story out verbally. An INTJ personality all the way (although I seriously DO try to be respectful of other opinions and traditions, plus I somehow developed a lot of empathy despite my personality). I run a Risk Analysis about pretty much everything except when I make things. *laugh*
I love to line dance. Granted, I can’t really go and do it anymore, but on my rare good days, neighbors get a weird silhouette of me doing the Electric Slide or 20 Step in my kitchen while I make a sandwich. If I have any alcohol at all, even a shot, I want to dance. *laugh* And I can make a lot of songs work as a two step. The stereotypical “white girl club dance” of the ‘00s isn’t as limber or seductive as it used to be, but I can’t stay still if “Ice Ice Baby” or “Cradle of Love” comes on. *laugh*
I had a lot of unique or once-in-a-lifetime experiences before I even turned 21. I got to ride in a tank that was retrofitted to drive on paved roads, sat on a cannon, and hugged decommissioned bombs with one almost as tall as the gazebo. I got to explore (very limited, meh) a submarine being decommissioned. I was actually on a volunteer fire department and studying during my HS senior year to be trained in EMS. I did hula (poorly lol) and the rare version of martial arts, Bok Fu Do. A tiny little girl (I’m talking like 6 YO or something) being trained by these world-renown men; how cool is that?! I was recruited in HS to be a journalist for The Army (although I couldn’t pass the physical). I studied and fed trapdoor spiders with my dad as a kid.
And I think I’ll close this list out with my very diverse music collection (or called weird if you want to hurt my feelings; lol). My Top Favs Playlist ranges from musicals (from the sexy Gerry Butler all the way to the amusing King Cry-Baby), to country (give me Johnny Cash, Johnny Horton, Blake Shelton, or Toby Keith and I’m equally happy), to Eminem and Halsey for a jam session, Celtic Thunder, ballads from Joe Cocker to Skylar Grey, to Oldies ranging from The Beatles to The Beach Boys and Elvis Presley. You never know what genre my random setting will play next. *grin* Even Echo is unsure what to pick when I ask her to play something I would like. *laugh* I have three different Christmas playlists from Classic, Contemporary, to Classical, but I DO keep them separate, so I defiantly say that it’s diverse and not weird. *grin*
Anyway, during such a time of upheaval, anger, and fear, I hope this wildly odd post gives you a little escapism and a smile. According to some *mutters under my breath* I’m odd enough to make a couple blog posts like this, but this is probably enough. *laugh* Did I mention that I love to box, but I’m also a sucker for anything with glitter? That might be kind of a unique combo. *grin* Stay safe. 🙂
I know Home Health is supposed to help, but it may be what breaks me for the month. Lol Yesterday the meeting was 7 hours later than originally set, after a night of insomnia. No call yet to say when to expect today’s, so yoga pants and oversized tee are on in case it’s a 5 minute warning. I start PT officially today. I’m ready with my mat, XXL heating pad, TENS unit, and coffee. Bedrest exercises and falling prevention. Sounds fun, right? Anyone want to share in an exhausted pity party this morning? Lol
Sparkles are definitely required. I earned them. 😉
I am gobsmacked. Straight up, holy Scooby Snacks, you name it, shocked! It turns out that everything that happened in March, which caused this “massive progression”, was completely different than originally thought.
Back in early March it was believed that I contracted H1N1 with a very nasty and acute sinus infection following, which triggered a huge progression in my Fibromyalgia. Nope!
My awesome doctor started me on Tamiflu as a preventative the day I was exposed to H1. Yet I still presented with difficult flu symptoms, so it got chalked up to my immune system laughing at attempting preventative care. Since the week on Tamiflu, as of June 9th I finished my last pill in my fourth course of heavy duty antibiotics and still have the same weird symptoms that are like a sinus infection mixed with something weird. It turns out that the Tamiflu worked. While at the hospital, just days before the announcement of Covid, I actually contracted it. The presentation of symptoms were of a medium case of Covid that didn’t require hospitalization (I know, I’m amazed by this too!). Following this was the start of what has been anecdotally called “post Covid syndrome”.
It threw my health into a bigger tailspin than anyone could figure out and made my Fibro absolutely unrecognizable after my getting to the point of knowing every warning sign of what was about to happen, from having it for so long. And without my realizing it my symptoms got so bad that I believed I had progressed so rapidly that I was actually dying.
My amazing concierge doctor noticed the change in me and immediately ordered Home Health, since I had absolutely no quality of life anymore and was on bedrest almost around the clock. I had so many falls that one went so bad that I fell and hit my disability handle and hurt myself pretty badly. I had a body and symptoms that I couldn’t recognize or identify.
Home Health (HH from here on out) stepped up FAST. Within just a couple days I had both my nurse and PT Evaluators here to establish symptoms, goals, and all that good stuff. During the PT Eval he looked at me and said that he’s treated Fibro for many years and this wasn’t the presentation of a Fibro progression that he’s ever seen. It sounded more like the after affects of Covid than H1 or Fibro. Say what?!
That night, once the Fibro brain fog lifted as it usually does if it’s nighttime, I went down the research rabbit hole. I went to all my trusted sites from when I worked in Neurology first. They led to this, which led to that, and then to several epidemiologists, and finally to one epidemiologist who also focuses on ME/CFS (Fibro’s official initials nowadays). He started a list of post Covid symptoms that general population has been reporting, plus the extremely weird symptoms and changes that ME patients have been reporting, along with their “recovery” stories. Their Fibro had undergone dramatic changes that made it unpredictable to them too. And I had almost, if not all (it’s daytime, so happy brain fog time), of the post Covid symptoms.
This explained why super heavy hitting antibiotics couldn’t kick my symptoms for the first time. It explained how I could suddenly get bouts of difficulty breathing and get the barking cough back, and it suddenly disappear as fast as it came on. The increased falls, even more acute fatigue, unpredictable new symptoms that were attributed to Fibro, pain that my usual pain regiment can’t even take the edge off of, and even the massive swing of depression despite having finally gotten stable with the right antidepressants. We threw the proverbial kitchen sink at this and I couldn’t get better, so of course I thought this was it. So I just waited for someone to accidentally expose me to Covid and finish it off. No one expected that I’d survive it.
I survived. I have Fibromyalgia with a laundry list of other Invisible Disease comorbidities and I had a case that didn’t even get diagnosed as Covid until I was in the negative testing phase. And everything I have been suffering since St. Patrick’s Day fits absolutely perfectly with this syndrome of after effects.
HH is still a Godsend and although tiring, has all ready improved my life (not just with this whole revelation), and I’ll continue to learn how to manage, but from a massively different perspective and now with hope. We actually have long-term goals again. We’re celebrating. We’re learning how to adapt, especially since I may not get back to my cruddy pre-March “normal”. And we have to be super careful that I don’t get exposed again, since there is absolutely no idea if I can be reinfected or develop something else from exposure. We don’t even know at what point I technically stopped being contagious, but thank goodness I was all ready under quarantine for H1N1!
But a sickly gal with Invisible Diseases is a survivor. I’m so damn thankful and proud of that. My body pulled through on its own for the very first time. And who knows, maybe having Fibro helped fight it? “This is my territory to terrorize, so back off!” I know, absurd, but it makes me smile to think of my Fibro smack talking a pandemic trying to take me down. *grin*
So to the other Spoonies, have hope. I know very well how that seems impossible, but I’m proof that we can do this. And I’m here if you need to talk, have questions, or want to see if maybe your weird new symptoms match. And guess what? The government is finally starting to notice us and see that they need to help us. This pandemic is expected to slam a lot of people with Fibro and other post-viral Invisible Diseases. That makes us an even bigger portion of the population and they have to see us after this. We CAN survive and they WILL have to research how to help us. I’ve always believed that with every bad thing there’s at least a tiny silver lining. This horrible situation will finally bring us hope. Suicide and progression aren’t all that we face anymore. HOPE.
I think we could all use this message right now. In this time of fear, grief, depression, and isolation, most of us have had time to evaluate our lives, circumstances, and even self worth. Many are struggling with having had the time to stop and actually reflect, and we often end up with some dark thoughts. So please remember that YOU ARE WORTH IT. You always were.
I’ve spent my entire life seeking approval and recognition. I felt like a failure because I became disabled and usually can’t do things that garner acknowledgement and praise. I have had to leave my career and now end two business ventures.
I put a lot of work, time, creativity, and my precious little bit of energy into my bath and body business, and often my products never sold or were commented on, and it hurt. I felt like I had failed at another thing in life. Now I realize that I sought recognition and praise, when I really needed to be proud of myself without requiring others to say it.
There’s a difference between being humble and knowing your self worth; knowing that you are worth it. I read this and it just clicked suddenly, and I hope it does for someone else reading this, too. Whatever you do, even if it’s taking a rest day because you’re out of spoons if you’re a Spoonie, or you put yourself at potential risk of illness by being an essential worker, you are awesome. You are awesome just because you are and hopefully this helps you to be proud of yourself without waiting for someone else to say so, to make you feel it. While you ponder this, if you are needing this message, I acknowledge you – that you’re awesome and worthy. I know that you are stronger and better than you realize, regardless if you’re successful, good looking, disabled, a nerd, searching for the right career, or just taking it day by day. We are worth it.
The Invisible Illness Awareness Day came this year while I’m having quite a struggle. If you feel inclined, please help spread awareness that there are invisible diseases that are barely understood and often disabling. The number one cause of death with most invisible diseases is suicide, because we seldom feel believed or understood, and we can become very broken when we lose the life that we knew.
In honor of spreading awareness, I’m going to be super vulnerable today and admit a few things. I am trying to accept that this is my new normal; although antibiotics got rid of the sinus infection, H1N1 combined with my Fibro to do a real number on my body. My level of illness has progressed again. In officially acknowledging this, I realize that I will have to make a decision on how to close out Georgia’s Pampering as a business. I’d like to keep the blog and hopefully still be able to provide useful information, but I’m no longer going to offer products that it is no longer healthy for me to try to make.
I’m also going to give in and get the forms done for my disability placard, so when I can manage to get out, I can do more by not being worn out from walking through a parking lot before I get there. I’m also going to use my standard wheelchair for when I leave the house, if it’s not a small outing that my cane can handle. I am now having too many falls and too much weakness to risk relying on my cane and hope. It’s silly, but those are two incredibly difficult decisions. Thankfully I all ready have a wheelchair from when I injured both ankles and feet, but unfortunately I can’t self propel myself for long without the fibro acting up in my arms, so we are looking into a motorized one. Unfortunately, because it’s for outdoor use and we do not have an accommodating house, the cost is out of pocket, so we are pursuing a few options of inquiry. Because we’ve made so many adjustments over the years to accommodate my indoor needs, if I want to have a little independence or enjoy time away from home, due to having a different kind of disabling illness, I don’t qualify for help. I guess I found another medical donut hole to fit into.
So, big changes are in my future as I stop being stupid and stubborn, and make some needed changes to accommodate the worsening of my symptoms. Maybe by being so brutally honest about what I’m giving up and dealing with at just 40, that’ll help someone else believe in these invisible illnesses, believe us when we say we’re sick, and maybe help someone understand a chronically ill friend just a bit better. I dream of a day when Awareness is just as vital as the MeToo campaign. Since it’s easier for a picture or pic with small message to get passed along, I’m going to share some down below. Please, please, please, feel free to share any and all, and help us raise Awareness for Invisible Diseases like Fibromyalgia/CFS.
Self help books and psychologists start a therapy course by changing how you think about your illness. It’s a challenge to make you stronger, adapt, and find other things in life that you are good at. Sure, that’s true, but stop telling us that we aren’t losing our lives. Acknowledge this and help teach us how to cope or heal from these losses! We are losing careers, relationships and friendships, hobbies, and basic abilities sometimes. Some of us lose the ability to feel safe outside of our home, because our immune systems are so bad that being around other people becomes literally risky. We lose the ability to enjoy date nights, feel good about ourselves, and sometimes we are paradoxically terrified of people seeing us at our worst…when we have extra cushions because just sitting hurts, we have braces or bandage wraps around joints, we smell like Bengay, we’re slowly dragging behind a walker, and sometimes we have to choose to use our energy on changing out of pajamas or spending a little while hanging out on the couch with our spouse. I’ve learned a lot of things during my journey and I lost a lot, too. So, no matter what therapy says, I’ll try to raise Awareness every May 12th that I make it to, and I’ll be honest that Fibromyalgia/CFS/Invisible Diseases all hurt from being so misunderstood.
Thank you for helping me spread Awareness and for being here during my journey. If you feel comfortable, please feel safe to share your journey in the comments. I’ll block any trolling. If you’re a Spoonie, you don’t have to keep your “I’m okay” mask on with me.
I know I created the new blog for my SL photography, so those that subscribe and don’t care to see it, don’t have to weed through posts for what you’re interested in, although things have been rough and I haven’t posted much anyway. So, I’m posting a couple of links over to SL digital Photoshoot posts that I’m really proud of. I’ve become too sick to let my creativity work through my products, so I’m learning to use it in the photoshoots instead. I hope you don’t mind having a post that is a little different. Stay safe in this ever-changing time!
For those of you that support it, Happy 420 Day to you! 🙂 Hopefully we’ll see at least medicinal nationwide to improve this weird year! 🙂
Yay! No more H1N1 self quarantine! I came by that status the hard way, though, as any Spoonie probably would.
I couldn’t get over the symptoms after I posted about my delayed recovery and realized that I most likely had a sinus infection that was causing the fever (which is a way different fever than normal people get and the unaware are so disbelieving of that), which kept extending the self quarantine as possibly still contagious. So I contacted my doctor in hopes of getting an antibiotic, but the continued symptoms and my immune system issues really concerned my doctor, so she referred me to a colleague in KC, K, who works with a facility that works with the CDC, and I had to do this online questionnaire. After review they decided that they felt I was high risk for having COVID and wanted me to go to the facility at KCK for testing during this certain time frame.
While this response was making its way to me, I began to present with an acute dry cough, wheezing, and shortness of breath, with a lot of pain from pulled muscles due to the coughing (and the fibro having fun, I’m sure). The only way I could breathe easier was by laying on my side almost flat and not moving, especially not being reclined or sitting up facing forward. It got bad enough that L called a Topeka hospital (no way I could make a ride in a truck to KC with this going on!) and had to go through an online triage basically. They decided I needed to get to the respiratory center they set up as quickly as possible. We weren’t really sure what this new center was that was created to respond to this outbreak, so we packed my “go bag” that is prepared any time I may be at risk of staying in a hospital (you learn to plan ahead when you have a chronic illness). Well, I laid on my side on the bed, trying to dress, and he added the last minute items to the bag, since I had one ready for a possible trip during the whole H1N1 thing.
So, we quickly (okay, very slowly because I could barely walk without falling to my knees coughing) went to the address the nurse gave. It was a mini tent city erected in front of the hospital’s north clinic. People direct you to drive into the first tent and direct the flow of vehicles, while workers move between the vehicles doing their assigned tasks, such as one for symptoms, another for vitals, etc. With each worker the driver is directed to the next area for the next triage area, with directions to keep windows up, patient is masked except when asked to remove it, etc. It’s kind of hazy, but I think at the second tent is where the doctor did the drive up exam. He confirmed that it sounded like a bacterial infection (sinusitis), but with my high risk status with L being among the public at times and my compromised system that was even further compromised, I got to have an H1N1 nasal swab and a COVID swab, for good measure. In less than ten minutes the H1N1 test came back negative and the self quarantine was no longer needed then. He prescribed an intense antibacterial prescription and we moved forward to the next swab section. The H1N1 was like a small bendy bottle brush jammed up the top of my nose and I kept wiping under my nose, thinking I had a bloody nose. I laid sideways on the console while waiting for the next worker and it hit me how surreal the whole experience was. And then SHE came to the window. He rolled down my window and she asked me to pull my mask down, and told me instinct would be to pull back, but don’t, so I pushed my head back into the seat cushion. Good thing I did because that thing removed mucus somewhere near my eye socket, because that tear duct immediately started streaming. *laugh* Holy biscuits and gravy! She closed the test container and said to go ahead and leave.
As we were leaving it hit me how bizarre of a situation we had found ourselves in and saw firsthand how intense this Pandemic’s treatment is, even in our neck of the woods. Medical workers in varying degrees of protection, from droplet protocol all the way up to a sealed suit with breathing unit, and seamless triage the whole way, with preparation to send suspected cases to quarantine. Sitting in the tent city was like something from a science fiction movie or alien visitation thriller. It was a mixture of feeling like a zombie checkpoint and a prep station for scientists interacting with some unknown alien craft.
It was definitely the safest exam I’ve ever had, despite it all, because I wasn’t exposed to any additional conditions, which is a first. It was definitely an unexpected and intense event in my life, so I can mark such an occasion off of my bucket list (I’ve lived an odd life with incredible and strange occurrences in it, so I wanted to make sure to have one more on my bucket list. Lol). And both nostrils really hurt, but I could breathe through them both for the first time in weeks, since they swabbed everything in my sinuses up to near my brain, it felt like. *smile*
I’m now on my fourth day of the antibiotic and responded well almost immediately, so my usual post-illness sinus infection got really bad at one of the worst times in this century. I’m thankful for the incredible workers who are on the front line of this and it increased my awe of their bravery by 100%. While I stay laying down to ride out the massive side effect of nausea that my Marinol doesn’t come near stopping, I’m still waiting for the other test results, but my cough has resolved except when I try to actually do something. I have an incredible other half that braves exposure to get my prescriptions, foods that will help or may stay down until the current prescription dose’s nausea lets up, and takes care of keeping me settled. It’s funny that in all the marital advice I was given almost 16 years ago, no one ever said that you can fall even more in love with someone when the times get bad and your partner decides to weather through those times with you. In the meantime, I got us an annual subscription to BritBox, slept nearly 24 hours straight at one point, and we had a reclined “date movie night” streaming a rental movie early this morning. *laugh*
I wish there was something profound I could share, beyond my experience, but it really just boils down to having gratitude for those that are at risk working near others or in medical/ emergency services, those that keep working for us to be home and upset that we have the time off that we usually wish for (although everyone would prefer for vacation to be taken on their terms, paid, and hopefully one in which they can fully enjoy themselves, of course), and also gratitude for the technology that helps keep us connected. Drop a text, share silly pics on SnapChat, do a Zoom chat, or even call (*gasp*!), and then we aren’t alone in this. It is a scary world right now, with a lot of grief along this journey, but humanity has survived other threats before. Kindness, respect, and gratitude are our best bets for making it through this as better people who will someday recount how awful 2020 started out, and how we, as a collective, made it through.
Stay safe and reach out. Isolation breeds depression quickly, which is just as dangerous IMO. If you feel alone and you don’t have others to reach out to, you can reach out to this (possible) stranger and know that someone will be there to chat with through this. I know how deadly depression and isolation are, so please don’t hesitate to reach out, even if you don’t know me personally. My world grows infinitely better with each new friend. 🙂