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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.

Round 3

Covid came to visit again and unlike round two, it really kicked my hiney. I suspect it’s because of a stronger exposure, since it made its way through our little family, but with so much unknown about the ability to contract this multiple times, who knows.

Although my KS doctors are still working with the vaccine roll out, MO isn’t, so when I have an online appointment with my fibro doctor on the 1st I’m hoping his staff can get me scheduled for the shot up here at St. Luke’s. It seems like I’m recovering, which is when my doctors most worry that I’m most likely to have a sudden, severe decline that requires hospitalization. Being the practical person that I am, I appreciate the honesty. Being scared that with my problems if I get hospitalized for anything I’m not coming back out…well, I kind of like the voice in my mind that fibs and says we’re getting through this just fine. Lol

The great part is during this I am literally in a fight with KS Medicare about them still believing I’m disabled and wanting an evaluation done in person in Topeka in a couple of weeks. I’ve talked to national, KS, and an assistant to the case worker for my KS DDS. All said it’d be cancelled and to wait for MO to contact me, since they’ll probably want to do their own investigation beyond the huge “paperwork reduction act” packet I filled out months back. On the 18th, two solid weeks later, I received a second notice of a new evaluation scheduled at the same place in Topeka. 🤦🏻‍♀️ One, if the paperwork has said “no expectation for significant improvement and will never work again” for over a decade, I think the government is wasting money on paying some doctor to evaluate me, then a committee to review, etc. Not to mention the cost behind all this paperwork! Two, KS hasn’t been paying for my disability for 6 months. A little late to be deciding if you’ll continue to pay me, IMO. Lol Politicians get gold toilet seats and the government pays people to harass permanently disabled people. I don’t usually get very political, but dude, why do we have room in the budget for this?! And a bit ironic to me that MO hasn’t had a problem other than when they would move my monthly payment to a different bank than I used for years. As the youngest would say…”Kind of sus to me.” Lol

So between Covid, planning the Handfasting (under 70 days!), court, and settling into our family rhythm, I know I’ve been quiet and wanted to post a bit of a heads up. However, I’ll end with a few cooler things though than the blah. 😁 One, the eldest got Captain of the Rugby Team! Sadly he only got to play once before we all crashed with the bug, but in a few weeks, we’re back to Saturday matches of young men beating the holy tarnation out of each other. 😂 Two, which was worrisome at the time but funny now, my fever got warm enough while sick that my Shamrock and glitter decorated fake nails began dropping off because I warmed the glue with my fever! We still haven’t found one rogue nail, which is disturbing lol, but they started popping like popcorn, even into the cat food when I scooped a bowl! 🤣 Lastly, although we’re having to make some modifications due to Covid cutting events out of our time frame, the Handfasting plans are coming along nicely. I think, in a way, the adaptations that are coming about are even better. It’s definitely not the original three mental images that we had, but it’s more cohesive and “us”. We had to cancel our engagement photo shoot and have had some issues with my dress, but being sick, and honestly a bit scared about it causing complications, has really helped to hone in on the things that really matter to us. And that’s how I want to close this little catch up post.

Life is hectic and the world feels like it’s in turmoil. Just don’t forget to take stock of the things that really matter to you. Celebrate any milestone you can, hug a loved one if you can and hold on long enough that it becomes a memory seared into your heart. Rejoice in having family/friend game night again and cherish the laughter. No matter how crazy it is and how much you’re struggling right now, you are loved. As someone who has fought suicidal ideation a lot before, I know it may be hard for some to believe and trust in it, but you are loved. And if you’re lucky enough to be in love, learn their love languages and wrap yourself in those beautiful moments to help during the bumpy moments. Don’t forget to pamper yourself in whatever way that suits you, either! A bubble bath, 5 minutes on the back deck without kids, crafting, or even gaming. You’ve had a rough year. Show yourself some love. 😊

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.

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. 🙂

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