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Daily Archives: August 26, 2021

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.

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