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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.

New Favorite Things, Random Items

These are the random things that didn’t fit with the previous posts. I tried to include screenshots with prices when able, but watch the reviews since not all that look similar are created equally and there are often sales. Everything in this post was bought on Amazon (never too early to make a Black Friday/Prime Day watch list on Amazon IMO 😉).

This is definitely one of those cases where the brand matters, it seems. These have done the best for us; so much so that we bought another two pack! Hammock and chair work best for me, although I have the funniest ability to somehow completely flip myself backward in the chair position. 😆 They dry quicker than some of our other pool items, they fit with most activities and physical needs, and wrap into the drifter position so they’re easy to carry while also being pretty dang light weight. The youngest ditched his pool float and noodle to opt for one of these, despite originally feeling they were “for old people”, so there’s a ringing endorsement. *grin* (I admittedly am still not used to 41 being considered an old person, but I guess we all had some age threshold and the median just went down at some point lol.) A small electric air pump has you ready for the pool within a couple of minutes and although some heavier weights don’t float as high, they’ve still done an impressive job even when a rambunctious kid climbs on with an adult. *grin*

If you have any wood furniture and kids, I can’t recommend this multipack enough. We don’t get wound up much about little things that are bound to happen, but it’s nice to have something that can help make those oops moments less noticeable. We have a variety of colors for our wood furniture, since it’s two partial households joined together and on a budget, so the best part is that if none match, you can cover with another color and usually between a few layers of different colors, the scratch or nick is barely noticeable. Plus, it’s in a marker form, so no brushes or cans or any or that. Of course, this is for touch ups and not your big jobs, but easy enough that the youngest takes care of spots on his own even!

A total girly moment here, but I love this nail file. I was told that this type is way healthier for your nails, so I splurged, and now I can’t stand the old, cheap kind. Plus, it has a carrying case, so I can drop it in my purse or bag and take anywhere I go. Although I never found where it said it works on them, it works great on my fake nails when I decide to go all out and put the work in for pretty nails. (With my illnesses, I can’t grow out my nails and try not to draw attention, so when I want to be a little fancy or feel extra pretty, acrylic nails it is along with whatever color the youngest thinks is my must have this time. 😉😊) This sucker isn’t going to break or peel apart either, and is actually pretty.

A seriously random set to add for the post, but I’m obsessed with the smallest especially. I am NOT good at sewing, but when I had to modify my Handfasting dress, I needed good sewing scissors and oh man are these awesome! I use the little ones (which have a thick plastic bag to sit in *chef’s kiss*) for all of my small projects like sewing a button or snipping loose threads. For scissors these are a freaking amazing set IMO (for amateurs probably).

Now, I got obsessed with “Diamond drill paintings” during my Covid recoveries and have done a variety from cartoon characters to landscapes to animals. Amazon has a variety of sales and options, but watch the regular price. This is one of those instances where you get what you pay for. If the deal seems too good to be true, you’re probably not going to be overly happy with the finished project. I love The Nightmare Before Christmas and bought a whole combo set on sale…as the youngest says, the faces are pretty derpy. *laugh* Also, I’ve always had extra beads leftover and have noticed that most brands have a standardized item number system, so at some point I’m going to actually make one of my own with the leftovers. Here are a few of the different favorites I’ve done (these are the pics, not the pixelated versions for putting the “gems” on or the after results, which seldom photograph well IMO). There are some gorgeous pieces that are expensive at face value, but watch for a sale and next thing you know you have maybe 8 waiting on a shelf to work on *cough*.

If you become obsessed, you’ll need accessories. Each project comes with beads, clay “glue”, at least one stick, and at least one tray. Well, I needed a sturdy surface, I’m almost blind as a bat so back lighting, and something to hold my supplies. So, two more acquisitions when the prices were right.

Please note that this works for laptops too and there’s a version that plugs to USB to provide even more cooling if gaming, so I have three versions of this bamboo tray.
Trust me that the mesh stand for the light feels so much more sturdy than the frame versions you’ll see and those blue comfort grips are a MUST! To prepare, I open each gem bag in order and empty into one of the little holders I numbered in order, and if there are more than it holds, I make a baggie with identifying info on it, so no guess work while working on your art. The roller is a blessing when you get a section done and want to make sure they’re pushed on well and having 3 brightness settings to the light is fantastic!

As you can probably guess, birthdays and Christmas gifts are mostly “paintings” geared toward that person’s interests. I personally love a gift someone made/worked on themselves or is handcrafted, so it’s a love language for me to give gifts of the same type. You get a patriotic one, you get coastal, you love sloths, the house needs cute sayings and I can’t embroider so here’s a version of that… 😉

I’m finishing this round with one of our game night amusements. This one we tend to play with our friends instead of for family fun night, but you can always pull the few more risqué ones out or gloss over the “what does that mean” if the younger ones even bother to ask what the adults are laughing about. It’s also really amusing to see who in your group will admit to certain behaviors without the group even voting for that person. *laugh* It’s a toss up between the youngest and I over who wears the most oddly assembled outfits sometimes and who has the worst bed head. I’m definitely the one who will correct spelling and grammar even in text messages. *laugh* This must be played while lighthearted and not taken personally! This game must be approached with humor and is best played with people you are comfortable with. When played with the right people, this game is an hour of pure laughter and not-so-guilty admissions. *grin* And it’s not full of the crude humor of CAH nor are adult beverages needed. It’s a lot of fun as is. Tip: If you like the format of CAH, but don’t want to go there, yet want something more thought provoking than Apples to Apples, you should check out “Conspiracy Theory”. That game can be a riot and works great with the fake player added, too. Although even adults don’t understand some of the cards (seriously, conspiracy theorists have some acronyms that even Google had trouble with lol), you can come up with some really funny conspiracies! Just remember to play “to the judge”; for instance, if our youngest is playing, whatever makes the least sense is going to win when he picks. *laugh* With me, the most sarcastic and snarky is going to be the winner.

I hope these posts have been as fun for you as they were creating them and maybe given a few helpful ideas! I hope you’re all staying safe and healthy out there, and hope that maybe this helps us all remember to look for the happy little things in life, especially when things seem bleak. I’m always looking to share that silver lining. 😁

New Favorite Things, Kid Edition

We have a teen and a pre-teen, so things can be chaotic and requires a wide variety of creativity when it comes to organization and family fun. Here are a few of our favorites…

These were such a relief to find! I’ve tried several types and this has been the best by far. Not only do these Velcro onto a hanger and work in the closet, but it can double duty for other things than caps, and makes it super easy for them to find that hat that is just right (I figure it’s like women and shoes…they’re accessorizing, but I don’t pretend to truly understand why anyone needs that many hats, especially since I’m not a girl that has lots of shoes or purses either lol). These also work great for holding flat brims instead of only curved, even organizes winter beanies and sun hats (I bought several, so one is strictly for the teenager’s ball caps, while another is the family free-for-all organizer). I was worried about taking up too much space in the closet, but it’s just the width of a hat and holds so many (and all organized, so try to beat that! *grin*), that it doesn’t feel like any space is actually lost.

This is an older one, but I swear it was a huge help, especially with hybrid learning from Covid schooling. I felt like an idiot that I had no clue what these math names were when asked for help, so this was a blessing! We find them at Sam’s, but I’m sure they’re available elsewhere. Seriously though, division isn’t just division anymore. There are different methods and formulas in grade school! This explained the method, gave examples, has answers so you know you’ve learned it correctly so you can help them correctly, and actually matched all of the types that the school used. Hallelujah! Arrays and the Big 7 were total “what the…” versions for me. 😂 I swear I still find it easier to do the plain old long division I learned thirty years ago, but it was good to see that they’re working on finding methods that will work for everyone, because once we knew how to help him understand it, Big 7 was a game changer for the fourth grade. Other methods just didn’t work for him. I personally think these are more of a help for the parents than the kids unless you’re homeschooling, but man are they worth every penny when your child suddenly understands and can do their schoolwork!

The pictures make it self explanatory, but this organizer makes my day. (Yeah, it doesn’t take much sometimes, but organization definitely does it for me, especially if it stops the cycle of me having to do clean up after creative time! *grin*) Although Legos are the main feature (and rightfully so, since you inevitably step on them and they manage to find their way EVERYWHERE, and become the bane of your existence despite their awesomeness), I use one for crafts/play too. Play-doh, moon sand, craft sticks and Pom poms, etc. Mess stays contained, they can make all the ice cream cones and castles and wood stick catapults desired, and drop the stuff right back into the box to be closed neatly. And you can easily flip the pull out liner to drop moon sand bits into the trash if needed while never again seeing green sand spots in the carpet. Just remember to not be uptight about it. It’s going to stain and be messy inside. Just concentrate that the mess isn’t on the carpet or desk anymore and you’re not going to be stepping on Legos at midnight while walking in the dark to the kitchen because you have a sweet tooth attack. *grin*

We subscribed to Just Dance as part of both our exercise and family time budgets. Unfortunately, the over the thumb regular wrist holder for the switch controller doesn’t work with smaller hands/arms, but these are a massive improvement. Not perfect, but no longer a case of someone upset because half of their moves weren’t registered and their score was low, and no worries about what might happen to that controller without the band. 🙂 The subscription has a huuuuge library (thanks Sis for the heads up last year!) and even a section just for kids (just prepare yourself for PBS-like videos; you’ve been forewarned lol), although there are a ton of family friendly options in the regular catalog, with sometimes competing while other times the scores are joined for an ultimate score. This has been a great way for me to exercise with having health issues and also needing to stay out of the sun while taking frequent breaks, but also allows for great bonding opportunities. Just remember to get the regular ones for the rest of the family, because it’s so much better than sweating all over the controller and you may be able to get your teen to do a little “dance like nobody is watching” with you! 😊

You have to get creative for family night, especially when you have a wide age variety and want to be able to play with friends, too. And face it, the youth today pretty much sums up life experiences in memes, so might as well roll with it. *grin* This is a great option for laid back game night too, because the one with the energy can do all of the cards and displaying while the others rest on couches and chairs around the room. Bonus win: burn that extra energy from the active child, keep them extra occupied, bond as a family, and have a fun time all around. It’s a good game for most ages and you don’t even have to be familiar with the original meme for the game to leave everyone cracking up. Sometimes there can be a little innuendo, so just a heads up there that you might want to scan the cards before play and pull any that aren’t appropriate for your group.

If you’re patiently building your family game collection, you can often find most family games on sale at least a few times per month. This is one that is definitely geared to the younger generation, but can be pretty amusing if you’re okay with potty and fart humor (which you need to be with most Littles, if we’re realistic lol). This is like a kid version of Cards Against Humanity and if you have a tween or near there, they have some jealousy that they can’t play that popular game, so this helps fill that gap and give them a version that’s okay for them yet feels so risqué still. *grin* One tip we found is to have at least one “blind player”, which is a non-player that you just draw a random card for and add to the answer pile each round. The extra player(s) add a random and funny new dimension, usually, and honestly, they usually win when we play. *laugh* This is a low exertion game and can be easily modified. We usually play with the youngest as the judge every turn. One, it’s more amusing for him to read all of the silly humor instead of hoping his gets picked and two, it’s a slick way of having them work on reading out loud without realizing it and super easy going if you have to help with correcting on pronouncing words or pausing in reading when there’s a comma, etc. I am all about finding ways to get kids to read out loud and get help when they won’t be defensive about it. And despite being “too old for family games” usually, we can usually get the teenager to play at least one round because few ever fully outgrow at least a snicker when it comes to fart jokes. 😉

Hopefully this has provided a few helpful options and smiles. If you have any to add, I’d love to read your comments if you have time to respond. 😊 It takes a village, as they say. 😉

New Favorite Things Part 1

While recovering from my first iron infusion I thought I’d write something upbeat, especially with everything in the news and going on in the world. I’m not going to post purchasing links this round, although most items are available on Amazon (we have stairs to the apartment, so nearly everything gets delivered by a company because it’s almost impossible to carry stuff up stairs with a cane without bothering other occupants lol). I’ve been a bit spaced since the infusion and don’t trust that I’d put the right URLs honestly. 😂 Let’s get to part 1 (since I haven’t done one of these posts in a while I have several items and don’t want this overwhelming)!

These have been so awesome for us! If the eldest has sports practice, I can still have a “plate” ready for him when he gets home without him pulling out every dish or feeling left out, and the younger can eat on time. Plus, they do well in the dishwasher and when things go bad, they’re cheap enough that I don’t feel bad if one gets left at school or grows the cure to something because it fell to the back and needs tossed during the refrigerator cleaning. They make great to-go lunch boxes too, as long as the actual lunch box can handle the size.

This is so easy to clean and handy! They have a wide variety of colors, but if you’re not picky, the less popular colors are often cheaper, so you can nab a great deal. So far even tomato based foods haven’t stained this little workhorse and no balancing like with the type that slides onto the side of your pan and holds your utensil (I had a pig that stood with the pan edge going in the middle of the legs and utensil slid inside the mouth, for example, and even a Nessie standing holder that fell and made a worse mess than just putting the spoon on the stove directly, so trust me, I’ve tried others).

This could be handy for anyone, but what has worked wonderfully for me is giving this to the 10 YO. It allows him to write recipes he comes up with, have a copy of ones he loves that others make (he’s learning to help in the kitchen, so having his own recipe card to read to know if it dive the tomatoes or slice them, etc, is great, plus empowering), and it makes a great way for you to peek and see what meals your Little truly likes when menu planning and they appreciate whatever you do, so you have no idea what to make. *grin* It’s also just plain handy for getting them interested in helping in the kitchen! Worth every penny IMO.

If you’re cooking for a family, especially when it’s a protein push time for athletes, this is SO handy! I have a smaller one I used for years and it had the circle element underneath that you worked with for being the hottest area and using the other spots as the resting or warming area. Although this is boxed back up in prep for hoping to move here in the future and is in the longer rotation so it could be packed, it’s an essential for us. It takes up your counter space when you have it in use, but cooks SO MUCH food at once and is more even in my experience than the cheaper/smaller versions. You can store it like a cookie sheet or on a shelf under other appliances (with padding between to keep you surface nice, of course), but Mr Tea and the can opener can definitely sit on top without causing any issues and using the space in a practical way, since I personally don’t like having it standing on the side. You use the storage method that works for you, but I tell you that this is awesome when you don’t want multiple pans going in order to get breakfast done for more than a couple of people, and my French Dips are so much easier than all the shuffling a smaller plate requires. If you have the power, plug both in and you have it all made in a jiffy and ready with easy clean up. Totally be the kitchen rockstar. 😉

These were all kitchen based, so I think I’ll end here and not make a super slow loading due to the pics. I think I’ll sim for Part 2 to be kid based and 3 to be miscellaneous. I’d love to hear any recommendations you have of course, especially when it comes to making life easier with busy kids! (Btw, we love the bento boxes so much they were actually on our Handfasting gift list, so that should show just how much they’re loved! Lol)

And the Adventure Begins!

Today we start the next twist of our Celtic Knot of life. 😊 In 12 hours we will be cleaning up and heading back out. What a crazy thought!

We started things off right…

Cinnamon Roll Pancakes as big as my head and
The savory yummies to balance it out

Now for the car ride to Kansas…

The obligatory candid with us in our “work” clothes to get the shelter ready for the event

In about an hour and a half we will be unloading today’s last minute items, and then the guys will take off to go get the rest of the items all packed and left at his mom’s near the shelter. Let the adventure begin!! 😁

The Journey in Memes

Just like Link and Zelda, it’s what Twin Flames do.

Once in a Lifetime

Things have been downright crazy while preparing for the upcoming ceremony, and I had a moment this morning to sit and try to figure out how it could seem like there is so much more to this than my first wedding. And then it dawned on me. In just 3 days we will be hosting a once in a lifetime event, at least for almost all attending or watching. In America we don’t often see Celtic traditional ceremonies and activities. St. Patrick’s Day here is very different and definitely nothing akin to traditional. I’m not putting that down, so don’t get me wrong please. It’s kind of awesome that we put our own spin (or flavor, as Little Man says sometimes) to things. With our common ancestry and interests, having my dream celebration of a traditional Handfasting is nearly mind blowing. 😁 With this being so different than anything that is usually done around here, it’s a lot more complicated, and that’s before you consider the kids, transportation logistics, etc. *laugh* I mean, we literally practiced and wrote out detailed instructions of how to do the cord binding during the ceremony, to provide to the officiant. This may be a celebration and not a legal event, but we all know me…I’ve researched all that I can, pulled out the parts that work for us and adapted as needed, and have every last detail in a list (or 4, depending on which type of list – to do on specific days, responsibilities, foods, overall checklist, yeah…I know, I have a problem. Lol

Thank goodness for The Knot and their app. Although I had to tweak things to all get out because this isn’t a wedding, it has reminded me of so many details I might have forgotten and keeps me on track when I overlook one of my written lists, plus it has a running guest list along with tracking gifts and thank yous sent. (Dude, how handy is that, especially if you kind of suck at writing and mailing those usually?!)

Anyway, we finished up a lot of the big things that can be done ahead of time and it’s now a waiting game to be able to do specific things on specific days, like buying perishables, picking up items from the bakery, etc. While texting tips and discussing the binding with my mom and our officiant, it really sank in that we will never be a part of or see something like this again in our lifetimes. That’s kind of awesome, IMO. Cord binding during a Handfasting, personal vows spoken (or slaughtered, if the person knows Irish Gaelig *laugh* – trying super hard to say the words correctly though, I promise!), and then decor that is completely about us. Absolutely none of your usual decorations. There are Phantom of the Opera, The Nightmare Before Christmas, Grinch, Harry Potter, and the list goes on…along with framed printouts of traditional phrases and how to say them, details about Celtic traditions, and then the fact that our ancestors trace back to the same spot in Ireland (and a few others in Europe, although at different times). It’s truly become a celebration of us.

I think it’s really easy to get caught up in what is popular or “normal”, and put the guests’ possible opinions ahead of our own when planning things. I nearly fell down that rabbit hole, but that’s where our personalities help balance each other out. That and he chills me out when I get all detail psycho and worked up. *laugh* I’m thankful that we entered this part of our journey sideways, so to speak, which made sure that we will have a super unique and individualized event. Certain individuals are unable to attend and their absence is felt keenly, but I’m thankful that I get to share everything leading up to it and then highlights of the day, thanks to the latest technology. We live in a remarkable time that allows us to really embrace life’s journey and share it with those we love. (And now mask free!)

Anyway, I just felt a desire to share my awe with you. Life seems so ordinary, and downright difficult sometimes, that it’s so beautiful that we, and our guests and incredible helpers, will get to be a part of such a once in a lifetime event. All the way down to dancing The Wobble, which was requested, because I’m all ready a “weeble wobble” due to my illness, so I don’t plan to dance ever again to something that challenges that. *cracking up* The generosity of spirit shown, the understanding of trying to build a new home from two divided ones, and having such a strong support system develop through this has made it all the more amazing. And I must say, there is nothing as “oh, I got something in my eye” inducing as a ten year old saying they can’t wait for the ceremony that bonds you as a family, and that special shy smile when they hear that you made sure that the song that’s an inside joke for just the two of you will be played even though it doesn’t really fit as a dance-type of song. It’s been 9 months of “firsts” and I’m blessed that I get to be part of such a unique event that keeps those firsts coming, when I used to think that my disability was a death sentence. 😊 God bless the Celtic Knot of life’s journey. 😉

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.

Sharing Two of My Favorite Things

After yesterday’s post I thought I’d share two of my Tinkerbell “Happy Thoughts” that would definitely make me fly. 😊 For our Handfasting Ceremony it meant a lot to me to get our “cord” just right. We recently got the completed Handfasting cord (we chose out of ribbons with Celtic charms instead of actual cording) all the way from an awesome crafter in the UK. I swear that you can almost feel the joy and intention vibrating from it. 😁 It’s our three favorite colors from our ancestral tartans, although one is also from the old tartan from the clan for the spot of land I have in Scotland (the modern just doesn’t suit me lol). So I’m including a picture of the cord. *happy dance* We even found a tartan scarf (it was the affordable version of tartan *grin*) for Donegal, where his ancestors first conquered and settled the area, and later my ancestors moved there. *happy sigh*

We will literally “tie the knot” with this beauty!
Donegal!

It’s hard to believe I’m actually going to get to do a Handfasting and that it’s just a few months away! Admittedly I stopped my Irish Gaeilge lessons recently, but with a few months under my belt, I think I’ll manage to successfully slaughter speaking part of my vows in it. *grin*

Credit for Handfasting cord: https://www.etsy.com/shop/TheToadstoolgarden?ref=simple-shop-header-name&listing_id=738209549

Credit for Donegal Scarf: https://www.etsy.com/listing/663962688/usa-kilts-irish-county-donegal-tartan?ref=user_curated_list-12&frs=1

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. 😊

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