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Spoonie Life Update

I’ve avoided writing much about my health struggles for a bit now. I figured with everything going on in the world, Covid, and all, that writing and scheduling the favorite things posts was ideal post my iron infusion, but it feels like forever since I wrote a vulnerable, real life, post, so here goes.

When I went to the hospital for my third round of Covid it was discovered that I had anemia. Subsequent lab work revealed that it had become acute. Hence the iron infusion I received at the start of this month and will probably have another in about 4-5 weeks (after we check the 6 week labs) to measure improvement. It was seriously rocky at first, although the infusion by my concierge doctor was absolutely the best procedure I could have ever hoped for; much less invasive and traumatic than a previous infusion I received that put me into shock I now know, and literally thousands cheaper, plus in the comfort of a room chatting with my doctor with him by my side. Truly best case scenario ever. I seriously wanted to lay down afterward, so we started the long trip home and then I started reacting. Dude. Funky. That’s probably the best description of how I felt for the ride home, beyond on the brink of tossing cookies. Sick on bedrest for a few days and then I had about 1.5 decent days. I mean truly decent days and even got to hang out with my mom along with both boys.

I had a rough night that second decent day and figured I’d overdone things despite taking some breaks, so did some bedrest and took it easy. I just kept getting worse though. It’s been weeks and some days our apartment feels like it’s a mile walk to just get a drink from the kitchen, let alone get something done. I really wanted to spend a lot of quality time with the boys on the last week before school started, but managed what I could, which I’m still thankful for even if it wasn’t what I hoped for.

After some consulting with my doctor and going through the list of symptom and body changes, yeah, I had Covid for a fourth time and am in “long Covid” now. 🤦🏻‍♀️ Seriously, world?! The first was supposed to kill me, yet I survived, so we’re just going to keep throwing it at me to see how strong Darwinism is?? And this is with both vaccine doses. And also means that part of my feeling poorly before my infusion was when I actually had Covid and chalked it up to the anemia and other illnesses. I honestly got kind of mad when I learned it was Covid screwing with my body again, since I’ve gone through so much all ready and not only got it again post vaccine but also got sick from the vaccine too, enough so I have to talk with the CDC becomes I opted to do self reporting post vaccine (it sucks, but if you have a preexisting condition, I ask you to consider doing it, because it’s the only way they’re really going to learn what this does to all of our illnesses, especially us Spoonies). At least we know why I’m not bouncing back more, as I should be by now, I suppose.

Witt everything else my new diagnosis of Hashimoto’s Disease hasn’t had treatment started yet either, so yay. 🙄 Basically my thyroid isn’t working correctly, hasn’t been for some time actually, and I have very poor metabolism, my body is attacking my own skin and causing it to scale off (yeah, turns out that’s NOT seborrheic dermatitis as originally diagnosed and why treatment for it and psoriasis burned my skin). My body is literally waging war with itself while bloating up, although some has improved either due to the Covid or the infusion, since my fingers are oddly thinner some days.

So two new issues to treat that increase fatigue and pain, which are the most notable symptoms of Fibromyalgia and CFS. Go me! Also will start a sleep medication soon so I can reset my rhythm to be more normal, since I want to still be a day sleeper, when my symptoms aren’t making me narcoleptic or playing Sleeping Beauty for 17 hours. Meh. The oral liquid iron I will also take to help with the anemia between infusions (and hopefully instead of) is so foul it has to be taken as a shot with some OJ. Did I mention that due to one of these conditions my stomach isn’t so keen on food or most drinks? Makes the iron extra appealing and I need to buy stock in the company that makes Emetrol. Lol

I play The Sims a lot honestly, since the distraction massively helps, and I’m working on retooling my SL storyline and gameplay. Plus starting a new Diamond drill art project. When I have energy I try to catch up on the chores a bit, do things as a family or with each boy as applicable, and pack. Yep, pack, because we are working on buying a house! His legal stuff is in the waiting period and will finish just in time to be my birthday gift. *grin* Shortly after my birthday, if the courthouse is open, we will finally be able to legalize our bond. I will then officially get the initials of our fav YT show, GMM, as the youngest frequently reminds me. *grin* How much more of a Mythical Beast can I be if I even get the initials of their show? *laugh* With all of that means we are officially able to start trying for a house now. We met with our realtor tonight and although we’re coming up to the slower time in the market, we have hopes, and there’s even a chance that we can outbid on a place we like nearby that’s active under contract right now (crossed fingers, toes, whatever would be greatly appreciated *grin*). If we actually can, then we should be able to move before the snow starts. Otherwise, it’ll probably be after the start of the year, unless something pops up and isn’t snatched immediately like two others that pended the same day before we could even have the realtor talk to them. When they say the buying market is tough right now, it’s true. I can vouch for it. Lol However, there are a plenty of things not needed until we move to the new house or craft projects that can be put off until there, not to mention clothing going out of season or not fitting, so plenty to safely pack and put in storage for now. (And I have a tracking system in a list app where I document what’s in each box and coordinate a code for the box itself and in the app. So easy peasy to get from storage if necessary. If I haven’t mentioned the app AnyList, it’s one of my ultimate favs of anything. I happily pay for the full version because it’s that awesome, and I want every feature possible, which is not normal for me.)

Just like the show’s theme song I used to watch in my youth, “you take the good, you take the bad”. It feels like a storm of medical mess and being literally uncomfortable in my own skin sometimes, but we are actually moving from what feels like the Prologue of our story to actually starting it. *big smile* We’ve been bonded for months now, but making it official gives just an extra bit of pep, and then the boys will fully feel comfortable saying “that’s my stepmom”. *cheesing* It still feels like a dream some days that I get to be a part of the lives of these incredibly unique and awesome young guys. And the honor of them sharing their thoughts and feelings with me is beyond words. Despite my back nearly arching from pain I can’t help but smile, knowing I’ll get to officially call them my stepsons without anyone correcting me with an “almost” or “kind of”. We’re officially learning to adjust to being our own family and household, developing chores and responsibilities, with growing pains, hurt feelings, tears of sadness and joy, and all the special moments in between that some take for granted, but we’re becoming a family. I’ll try to handle all the medical stuff that’s thrown my way as gracefully as possible because I have some very important reasons to fight for the best quality of life I can manage. *soft smile*

I hope this wasn’t too overwhelming or down of a post, but it feels like you’re on the Spoonie journey with me and I wanted to share the immense changes I’ve been going through. My sincerest, best wishes for every reader’s health and happiness! Please stay safe in this ever-changing life climate. Blessed be.

Tips for Covid on my Third Round

Of course this is just a silly blog entry, so talk to your doctor if you suspect you have Covid, you have Covid and need assistance, and all that good, legal stuff. I don’t assume responsibility or any of that stuff. By reading I hope you might learn something interesting, smile several times, and have a good day.

With that out of the way, now that I’m able to sit up in bed this morning and am actually awake during “normal” hours, I thought blogging is the number one course of action, of course. 😉 First up, don’t expect it to be easier or the same as previous cases of Covid you survived. I’ll wait here while you facepalm yourself. You survived the big and bad before, so of course you’re stronger this time and it’s just going to knock you a few pegs. Nope. You ~might~ get lucky enough to have a light case if you get Covid more than once, but plan on feeling like you’re knocking at Death’s door.

Second, unless your shortness of breath is height of the Pandemic kind of bad, expect to be pretty invisible at the hospital. Pack a go bag. Include a drink, extra layer of clothing in case you’re cold, phone charger, and throat drops. Other than procedures, my nurse checked on me absolutely no times. And they put my bag on the other side of the bed with the rail up, I didn’t have my cane and was too weak to walk around, and they hid the pillow and bedding. I had the loosely fitted sheet to the bed and the gown they gave me for my X-ray, plus those extra clothes that I still had before they moved my stuff. Staff did tag team care on me with long intervals of nothing but time to myself. It hurt to breathe, but the X-ray was good, so don’t expect a breathing treatment, pain relief, or such until near discharge. Just keep your mask on and behave. Bonus points if you’re not disabled and can get around the bed to get your things.

If you’re a Spoonie, prepare for the dreaded Fibro eye roll when giving your list. Yeah, still in this day of age and with so many “long haulers”, which got added to my diagnosis list too. Feel like your skin is being filleted off because it hurts when you cough? Med seeker. Your usual pain meds aren’t touching this feeling like your chest has been torn apart? Aren’t you used to chronic pain?

They literally want to handle your financial info on the phone, with masks on, on other sides of the glass door, and expect things to go smoothly. If the Sam’s Club door greeter can’t understand me with a mask on, I don’t think this little concept is going to be beneficial to either party. And if I’m told “I don’t understand you” one more time, you can bet your bottom dollar I’ll find a way to the door, open it, and lick you. Forget droplet protocol. Do you have “she just full on licked me like a psycho with a billion Covid positive germs” protocol? *grin*

Sure, you’re miserable, but this is a special time to spend by yourself contemplating how miserable you are. No masked up company. Even if your SO was positive and is being treated, you get this time to to yourself to reflect on that delightful feeling of your skin peeling off, your lungs being squeezed in a vise, and seriously debating what could they really do if you pull back the drape to announce to the nursing station that you’re checking yourself out because after five hours you may die of thirst with all of this coughing.

And if you’re a Spoonie, do NOT stop your regular treatment protocol without also talking to your doctor and pharmacist, and obtaining precise instructions. Thank goodness my SO’s best friend is a pharmacist! My pharmacy left it clear as mud, there are few trustworthy sites to cross reference once you get deep into treatments like we need, and that mixed up time of treatment was pretty close to worse than when I went to the hospital than before. Honestly. I’m truly hard pressed to decide which was worse. I still feel like I’ve been getting mule-kicked in my lower back, but it’s bearable now.

You may have escaped without losing taste or smell other times, but don’t brag. It’ll come back and bite you. Then you’re left with them prescribing something to help you eat because all food tastes horrific and it just doesn’t sink through your mind that you need the nourishment even if cat food might be less offensive smelling to you. I felt like I couldn’t brush my teeth and tongue enough, even though it triggered coughing spells. Thankfully you may get some flavors back and it might not take a really long time (cue the “Hallelujah”).

If you’re a Spoonie with Costo, check remaining self esteem and self consciousness at the door for the remainder of the breathing issues. I seriously discovered the most relief when I had a coughing jag was for him to hold me around my ribs while I coughed, wheezed, and hacked away. If you can handle it, get one or two shots of inhaler. That went out the window for me unfortunately. We found that a cough drop, coughing, being held, and try to softly sing was the best combo for mine. Seriously. Jacked up, I know, but nursery rhymes, favorite songs, whatever. I suspect some was mentally soothing and gave me something to focus on beyond the fear of not breathing. I think there is some merit to the belief that it helps get some rhythmic, light breathing working through lungs. Any which way, “She’ll be coming around the mountain”, “Ring of Fire”, and “Upon a Dream” had the best cycles for getting me through episodes. Vaporizer, humidifier, wet cloth, crawling instead of walking, PrimaMist, Albuterol, cold meds, bandaging down my chest and ribs…try the combo if you find yourself in need. Don’t know how we landed on it, but game changer.

You will become “The Princess and the Pea”. Your comfy haven of snuggles will become a torture device. You will suddenly develop rocks in your hips and bum. It hurts no matter what way you lay, especially after two weeks of laying up at an angle with most weight in weird spots. Sitting on a doubled over blanket may help for awhile. Don’t sleep on it unless you want it to also need dried because you cried on it in your sleep from the pain in your hips. I lost weight a rapid and horrible way, but smuggled in small boulders for a tush instead, and the first outing to the living room to sit on a couch while being around others (“A Whole New World” totally played in my mind as I made my way down the hall” helped, but a memory cushion topper arrives today in hopes that it helps with these last few weeks.

Follow the white rabbit. Drink the bottle of potion. Let the pretty lights overtake you. You deserve something interesting from this hell hole of illness, so if you’re having feverish hallucinations, enjoy them. *laugh* I couldn’t tell you much about most of mine, but lots of bright lights, a super mellow vibe, and the least amount of worries I’ve ever experienced made those difficult days more bearable. It might say a lot about me to my psychiatrist that I’d recommend the hallucinations, but I don’t care, I’ll sign a petition that it should be a legitimate part of Covid care. *grin*

Try to have a lot to look forward to as you start swimming up out of the swamp of Covid symptoms. It’s still scary and you worry every time you try to slowly walk to the restroom by yourself or look at the scar where the nurse blew your vein open during your hospital (stay? Time killer? Irritation to them? Pick what works for you lol). I have a super protective ESA cat, ceremony invites to be addressed and mailed out, my gaming blog (in my second pixelated month!), binge watched most of the shows I’ve been curious about, and had a list of details for the ceremony to make decisions about. It’s amazing how little truly matters when you’re planning an event and then get struck by Covid. The decorative stuff that had been in my head all went away and it came down to how to make what’s really important happen, and then let’s celebrate. Formal engagement pictures, a lit arbor, setting the scene a certain way…meh. What matters is that those who care are there to witness us “tie the knot”, we will have fun taking pictures and enjoying relationships, and we will celebrate life and love.

Finally, cheer! Punch the air! Watch Mamma Mia and put fake nails on so you feel super feminine. (Or whatever the equivalent is – listen to power tools and play Top Gear – I’m not going to pigeon hole or judge *grin* Just float your boat!) You have some weird “one up” items when talking to others who have been sick, you discovered who and what really matters to you, you learned that true love can survive unwashed hair and unshaved legs along with the weirdest noises your body can produce, and hopefully you’ve learned to be nicer to yourself. Maybe you learned that a ten year old being excited that you’re well enough to come sit on the couch and snuggle is one of the best feelings you’ve ever felt. Maybe you learned that your love language, especially when life is boiled down to being sick, is that you can order and provide the flavors of jello that the teenager wants, and it fulfills part of that “not your mom, but I will always try to help” feeling you have. And maybe you wake one while your SO is asleep, notice how their eyelashes rest so gently on their cheeks, how peaceful they look, and are thankful that the shit show you just survived isn’t colored by how messy the room is, how you haven’t vacuumed, or aren’t Superwoman. (Of course you now really want to take care of that disaster that’s built up, but be nice and take your time…) People love you because you make their life special. The whole illness sucks, but I hope you remember that important lesson. You may feel like you French-kissed a light socket, but they love how quirky and unpredictable you are. They love that you care about others more than yourself or that you want them in your lifeboat. Whatever. Covid sucks, but you don’t always get reminders that you’re worth being loved.

Just an amusing meme

Day 2 of 3, Week 2

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. 😉

A Surprising and Huge Update

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.

May 12th Fibromyalgia and CFS Awareness Day

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.



And believe me, we try to hide behind smiles and “keep on truckin’”
Sadly, sometimes we’re too broken to start the cycle again. That’s why we strive to raise awareness, for our fellow Spoonies who just couldn’t fight through another day

And often it strikes young and middle-aged people, who have worked hard to live their best life and independence. They often feel like a drain on society, with low self esteem and sadness hidden behind masks while trying to not show how bad they feel.


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.

Quarantine Lifted

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. 🙂

A Little Ruby and H1N1

I’ve been a bit discombobulated and quiet because I’ve had H1N1 for almost a month now, and it’s taken quite a toll on me. I may be getting a little better right now 🤞🏻, but have to go without a fever when not having Tylenol, and then it’s a ten day wait to end the quarantine, but haven’t managed to make it through the waiting period yet. Lol This social distancing and concern over the pandemic is kind of meh for us right now, since we are all ready following droplet protocol at home, I don’t leave the house, and we have a quarantine sign up so no one stops in and gets exposed. They even shut down Goodyear Plant for now, so L is home and not exposing me to anything the other plant workers come to work with (nobody ever takes off for being sick lol). Other than people hoarding basics we need and my online grocery ordering not working, so he has to actually shop, things are the temporary new normal for us all ready. (And yep, started Tamiflu the very day of exposure, so my doctor did the best she could, especially when she left the country the next day for a couple of weeks. Lol)

Insomnia hit despite my fatigue, so with L being off and us both still on graveyard shift sleep hours at the time, he helped trim my hair up and dye the undercut for me. It was a first for him on both and my first with an undercut, so we had a learning curve. Unfortunately my face is a bit red and splotchy in the pic because my seborrheic dermatitis has gone insane since I caught the virus. However, the debut of straight up Ruby!

Ruby red hair finally!

It was a little surprising to have some areas, which I suspect have been affected by my meds, soak up more dye and come out a bit ginger to me, but it’s kind of fun (probably after a few weeks of it I won’t still think that, since it’s only been a few hours lol). Any thoughts on what the next tone should be? *grin* (Has to be a non-peroxide needed type with the damage my meds cause.) I’m thinking after this about going black with amethyst tint to it, but not sure, so I’m open to ideas if you have one.

In these crazy times I thought a fun little post of crazy hair might be a nice relief in the inbox, with so many being about viruses and sad stuff. Stay safe and compassionate! 😊

Step One Complete!

*Lets out a whoop* I completed my first step of walking on the wild side and enjoying my life.

The comb is there to help give an idea of dimensions.

Although I usually try to avoid posting pictures of myself, since that’s just not me or what I want to write about, here goes!

The before

After a little bit of time on a step stool and buzzing hair below the clip where I’d piled the “don’t undercut” hair, and attempts to make an even guide line for the undercut using mirrors without my glasses, thankfully my mom came to the rescue. 😂

Ignore the nose piercing. That’s just the filter to help brighten things up. Lol
A little wild tousling without any product

And just for fun…

I feel so sassy!

I’ll be dyeing it Ruby Red, from the “flaming reds” collection, soon, so I’ll be the most daring I’ve ever been with my hair, especially when I also get to play with some sea salt spray and some tousling mousse. Give me a daring, dark lipstick and watch out world…or maybe IHOP or Snapchat. Whatever. *laugh* I’ve always been a bit into catching people off guard, such as dyeing my hair burgundy when I turned 18 or wearing acid wash jeans with light up tennis shoes while line dancing, but wow! I feel so edgy and like I finally found the look I’ve been trying to get all of my life. I must say though that I’m very thankful that things timed out right for my mom to come help, otherwise there’s a good chance it would have gone very badly and mad me mad, so I’d have just buzzed most of it off with pretty short hair on top. 🤣 Thankfully my guardian angel was working feverishly instead of drinking tea and wondering if I’d fall off the stool and crack my head open. Sometimes I think there’s a bet among the angels about which injury I’ll get next and to what extent. Anywho…*grin*

Next, decide which is the higher priority right now…getting my half sleeve tattoo or a Wii switch so I can get my groove on with a Just Dance subscription. I want that tattoo, but I’d really like to not have a muffin top with skinny bombshell jeans this Spring. In the meantime, I’ll read my book about a knitting group of vampires helping a fledgling witch take on a poltergeist and find a human murderer. Enjoy today, make decisions someday. 😉

Why Is This Different?

Recently I became unable to move by myself. I became over fatigued while trying to do a little bit of housework, so after hanging laundry I laid back on the side of the bed, with my legs hanging down. My legs and ankles are my worst trigger areas, and my claim for disability strongly rested on my need to have my legs elevated to reduce pain, on top of the fatigue. And I knew I was getting worse. I’ve known since about October that my symptoms have progressed. I couldn’t bring myself to believe how far until I tried to stand up and couldn’t even try to lift my leg without screaming.

Thankfully L was still home, instead of working, and came when I called. At first it seemed like an annoying “my hip locked up” kind of thing, but whenever we worked to get my legs to move, it was either a case of excruciating pain or inability to move. He got my left leg bent and close to my body, and then cleverly freed his hands by leaning his body into my leg to hold it in place. With one hand under my back and the other holding my right leg, he managed to turn me on my side. Poor guy probably still has ringing in his ears from my scream, but it was his clever manipulation that enabled me to then begin to move my leg. He did socket manipulation to make sure I didn’t have anything wrong in my hip itself, plus it helped loosen the tightness from the inflammation that was all ready flaring up. After some work, we were able to get both legs bent without assistance and got me into a mostly standing position.

For days I had a lot of pain, obviously when walking, but also trying to sit or lay, and found that I could actually sleep or focus on something like reading (instead of the pain), if I lay in the fetal position on my inflamed side. My whole thigh and connected muscles ached, but when my inner thigh and really low back got intense, we realized the pain wasn’t responding to my meds because it was mostly likely from my nerve. I was pissed off at myself for not thinking that such a simple thing as laying back for a moment to recuperate to take the laundry basket back to the laundry room could cause a problem, especially when I have my legs elevated at least 80% of the time, if not more. When L went to work was the worst though. That’s when the dark thoughts about what could I have done if it happened now, since I didn’t take my phone with me while just hanging laundry up. If I’d tried to slide off the bed, not only would that be quite a way down with the deeper mattress that we have, but I probably would have struck my head on the cabinet across from my side of the bed (it’s a narrow passage around our bed, since it’s a small room with a king bed lol). I finally faced that my body would have left me trapped in place, which turns out to be a huge fear. I’ve always found Alzheimer’s terrifying since working in a Neuro office, because these poor patients were trapped, and then auditing medical records and reading about patients who showed mental activity during neuro testing but were otherwise in a coma, unconsciously made my fear worse.

I’ve been afraid of my illness progressing until I’m on permanent bedrest for a while now, with the memories of what I’d seen and read behind one of those closed doors in my mind. (If you’re a new reader, I often compare life experiences and traumas as doors in a hallway in the brain. Things I don’t like to face or have trouble with are behind closed doors, and I’ve worked for the past two years to open and work through everything in each room I open. Apparently I have more closed doors than I had realized though.) There is another Spoonie that I follow on WP and have watched interviews of on documentaries and he has progressed to this, despite the fact that his body was in WAY better shape at onset than mine has ever been, and it makes me cry every time I read his posts or watch his decline in subsequent interviews. So I’ve known the likelihood of someday reaching that stage and have been afraid, but have worked hard at not acknowledging my progression or my fear. Every so often I’d break down privately and after watching one documentary with me L finally learned about my fear. We both set it in our minds to a later time to deal with, I think, although I am “death positive”, as mortician Caitlin Doughty from Ask a Mortician, calls it. (Btw, she is phenomenal and I highly recommend at least watching her interviews and her “Confronting Your Death” YouTube episode, and checking out Order of the Good Death.) Anyway, as a way of being positive and leading the best life I can while I can, I made a kind of bucket list of experiences I want to share with L and “my created family – biological and emotional”. I’ve worked hard, especially with the help of one of my best friends, to accept using my wheelchair the next time I go to an event, like when L and I went to Branson last Fall. Yet, somehow I shoved the reality of my symptoms worsening behind a door. While laying in bed recovering the door opened, though.

I’ve always acknowledged that Fibro has stages and some super lucky people even get to go into permanent remission of their symptoms. Nobody acknowledges that there are last stages though and I began to wonder why is this different from other diseases? Cancer is one condition that is openly labeled with stages, among others. Are doctors afraid to label Fibro stages because it’s an invisible disease or because it has unknown origins? Maybe because each person has their own journey and my “good” day could be a horrible day for another Fibro sufferer? I became angry that my doctors all emphasize that a person can get hit by a car and die any day, so live each day to whatever my fullest is without worrying about my progression, but none acknowledge that I was progressing to the next stage. I also got really mad at myself for closing my fear and knowledge that I had all ready progressed behind a door. I was mad that I hadn’t been strong enough to actually face it or even admit it to myself, let alone others (and believe me, this is a super hard admission to write about). My “episode” scared those close to me and I think we all had to admit that things are worse than I had been admitting or allowing others to see.

I don’t feel that it’s fair for my doctors to refuse to acknowledge that I’ve entered a new phase or that it’s terrifying to have progressed. It doesn’t feel fair to just say “I have Fibro along with the commonly associated conditions”, when saying “Stage 3” or something like that could emphasize to “normal people” that I have more needs and worse symptoms than others. They’re used to having the stage given as a measure for their compassion, willingness to assist, or even their concern. Why don’t we have the right to have recognition? Why do we always have to fight for every aspect of this often disabling chronic disease to be recognized and acknowledged?

So, I decided that I can be angry and still live the good life while acknowledging my progression. I’m going to get a bold haircut (for me), dye my hair a dramatic color (full on ruby, here I come!), and I’m going to try to at least get the outline of my half sleeve tattoo done; all hopefully soon. In the meantime I’m making plans for how to get assistance when I’m alone and don’t have my phone in the room when I have something happen. I’ve made my decisions for how I want my death and body to be handled. I’ve started making plans for the few items that are important to me to be passed along to those I care about (just a small tip: talk to those you want to inherit something. See if they actually want it. Too often we leave behind things that the recipient has no desire to receive, so if it means enough to you to leave that item as an inheritance, talk to them first). I’ve even started to give some of “my treasures” to the inheritors, because I don’t want to add to L’s responsibilities even more, especially knowing that further progression without dying means he will have to take on more of a caregiver role. In the meantime I’m still setting goals for my good enough days, when I can do a little or sit guiding someone, such as making more product and getting my small business going again. That’s one of my biggest goals for this year. A friend has agreed to be my business helper whenever it works for us both and actually looks forward to it, so I’ll get a small piece of “me” back. What I can do in my daily life is limited, but I have the power to make the most out of every minute of them, no matter how tired I am or how much I hurt.

We all have the chance to leave a legacy, even if it’s just a small one. Mine is a tiny voice to raise awareness about this disease and fight for equality for us Spoonies. Like they say in my teen favorite musical Newsies, “Bryan Denton:
Sometimes all it takes is a voice, one voice that becomes a hundred, then a thousand, unless it’s silenced.
” Mine is one of the voices joining the others to help get Fibromyalgia fully accepted and to get the needed research to help others. I may absolutely hate admitting how sick I’ve gotten, especially outside of my very small circle of people that I’m honest about it with, but I can be thankful that I have a way to be one of those voices; to be part of the change.

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