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Daily Archives: April 13, 2022

A Rough Patch

I didn’t want to write while depressed, so I’ve been mostly quiet for the past few months. It’s honestly been rough and scary this year, health wise, although there are glimpses of light thankfully, and I am blessing with an amazing support system.

Recently we had a cancer scare and I’m thankful to say that it came out negative. The biopsy caused extensive bleeding, which made my anemia worse and ended up with bedrest again with a slow recovery. The bleeding was unexpectedly more than the doctor was prepared for, although I commend her for trying to not look rattled or worried while working fast and calling out orders to prevent me from bleeding out on the table with a very different outcome than they typically see when performing one. I felt bad enough when I was dressing and saw the bio cleanup that would need to be done, that I wanted to leave a tip for the poor person that would have to clean what looked like the scene of a stabbing. *laugh* It was definitely a memorable event that is thankfully losing the terrifying edge to the memory.

I’m also struggling with long haul Covid (5th time and the stalker still hasn’t taken me down fully, so it’s about time my body learns to develop immunity and give it a restraining order lol), anemia (that is acute yet oddly doesn’t require hematology), rheumatologists refusing to take me on as a patient due to the complications of being a Spoonie and my meds, and some nasty little falls, among other details that I am frankly not up to discussing.

It turns out I have some internal abnormalities that were never noticed, which confirms some suspicions I’ve developed over the years of researching all aspects of my illnesses. However, on the opposite side of things, I now have an amazing Optometrist that prefers more unique cases like mine, and he has made my vision SO much better, plus has a plan of attack for watching, preventing, and treating any complications or worsening of my vision. My vision had decreased due to the wrong style of lenses and not because of my illnesses (mind blown that day), and it is awesome to get to game, read, do gem art, or just watch tv without getting a headache or squinting. (And I am throwing it out there that I think all optical practices need a digital scanner instead of manually dilating the eyes! We have digital, visual documentation of my optics that we can compare against for years to come, plus no horrible migraine or sun sensitivity from dilating! Seriously though, we need to campaign to make it mandatory. *laugh*)

On another positive note, I’ve been really utilizing a Christmas gift that I also bought for Young Mister K that I planned to write up in a new “favorite things” post, which may still happen, but it has been so helpful these past few months. It’s called the “Grievance Journal” from Boredwalk T-shirts. I picked them to try because it’s an awesome way to get your thoughts and feelings out without the kumbaya vibes of standard journal prompts. He’s definitely a more cheerful person, but since he’s so thoughtful and absorbs so much, I knew the empowered, encouraging, hype-filled type just wouldn’t fit him any more than it would fit me. If it’s a better day I may only write one sentence to one of the prompts. On other days I write a few sentences under a whole lot of prompts, which I just keep adding to, so it’s kind of an insight into my ups and downs when I read back through it. I also got a snarky spelling tee there, because snarky is always my first choice *laugh*, and I even love their fun emails (the podcast doesn’t play on what I use, so I can’t vouch about it, but love the snark and trivia to the emails). I am so impressed with them I became an “ambassador” for them. I have my own link for them HERE and even the coupon code of BOREDWALKWITHGEORGIA. I haven’t made any commissions at this point, but I love sharing about the Journal and their company, and will keep doing so even if I never receive commission. In case you take a look and find some perfect items for yourself or to gift, please use the 10% coupon code. Goodness knows we all need coupon codes these days! I thought I’d add a few pics of the Journal, since it’s a favorite for both of us and makes this post a bit more upbeat.

Look how nice of a book you can write all of your bad thoughts in and work through things. And no unicorns or “you can do this” slogans. *wink*
No need to hide your dark thoughts when you’re moody or feeling a bit evil. *grin*
I admit that I have extra pages tucked into this section. It turns out I hold too much in and also suck at timely comebacks. *laugh*

Anyway, I thought I’d share one way I’ve been coping with the stress and the scary days.

It was hard to miss a rugby game for the first time since they stopped limiting attendance due to the pandemic, because I was recovering from the biopsy that week.

My heart gets all Grinchy but also a bit sad to see the concerned look on Little Man’s face when he gets home to see me slowly come down the steps with my arm wrapped, or nursing some other injury, and he drops everything to dash up the stairs to try to help me any way that he can. I love the lectures he gives me for trying to do things myself that might get me hurt instead of waiting to have one of them do it for me, like bringing laundry downstairs (the latest culprit along with muscle weakness that caused a tumble on the stairs). I long for whatever bits of independence I can grasp, but those lectures are like gentle hugs that let me know that I’m loved and actually gets through to my brain even if I’m hurting. *smile*

I’ve also been struggling to set up the right medical team for this point in my life and have had to get a case worker to help even. United Healthcare has its drawbacks, but I am blessed to have their extra patient resources and look forward to finding some improvement with their help, now that we know the big C is back out of the picture. On Day 1 of calling to get a case worker I was provided with enough resources to actually have hope again that we can find some doctors that will be able to handle a Spoonie and some programs I can access at home for PT, meditation, stress management, and even tele health Psych (can’t vouch for that resource yet, since I’m still having a hard time giving up my awesome one from KS who retired but still works with me so far). As most Spoonies do, I’ve struggled with feeling like anyone cares about my medical stuff, despite the doctors literally being paid to listen and try to help, so it has been a bit mind blowing to talk with the patient resource team and have them demonstrate such empathy. They are the encouraging alternative side to the Grievance Journal, working together along with my family to get me through each day.

I may have also developed an addiction to Sims 4 and associated packs to keep myself occupied when I have insomnia and distracted if it’s a bad pain day, especially with so much bedrest for the past few months. I have so much to blog over on my gaming blog. *laugh* Vampire matriarch and patriarch of the family of 6, with the youngest being an oops after turning the parents into immortal vamps, who currently have some of each generation living on their English farm. *grin* Oh, and the heads just got a vacation home in a coastal, beach world, and are now learning to become spell casters as well. SMH. Although I play with the lower generations, I can’t seem to let the heads of the family live autonomously. *grin* And it may have gotten crazy enough with deaths, births, etc, that I created a family tree to keep track, even. *laugh* It’s a great distraction that allows for limited exertion and not disturbing others while they sleep.

To those who are reading this who have reached out and sent me best wishes, kept me updated on their lives (thank you so much for your patience and understanding Derek, especially!), or checked up on me, I sincerely appreciate all that you have done, even if my being introverted throughout all of this has meant that I’ve rarely reached out. Please know that I truly appreciate all of you and all that you do, and even the fact that you care enough to check the journey this Spoonie is on. Hopefully once my iron has gotten a little bit higher again, and no new things hit me out of left field, I’ll be back to writing more often and with more cheerful or helpful posts. (Although expect a few tips for how to be a new stepmom navigating a senior graduating and preparing for college. Goodness knows I feel so unprepared and hope I’ll learn some valuable things to help others. *smile*)

In the meantime I have my little guard cat snuggled against me in bed, the big cat is snuggling my legs at the moment since his adored K isn’t home right now for Zane to try and love on or play with, and one of my newest treatments is about to make me randomly pass out for a while (great when it’s during the night, but can be annoying when I want to do things during normal human hours *laugh*). Healthier wishes and hearty appreciation to those of you reading!

(P.S. If you like bluegrass or a country story kind of vibe, check out the song “Whoa Mama” by Steve Martin [yep, that one], from the musical he helped write and compose, “Bright Star”. Although it’s not on stage anymore, you can watch some school performances on YouTube for the storyline and then check out the Bright Star Concert on YT to hear the professionals sing it. It is the song that is upbeat and fun enough to help motivate me to dress and get ready for doctor appointments, and is just plain fun to me, especially with the voices the two professional leads have. I’m lucky Joe likes musicals, since this currently plays more than Phantom or Nightmare, ATM. *grin* I never heard much about it until I stumbled across some clips as it was being canceled, and he found the concert and soundtrack for me, so I hope you enjoy this unexpectedly delightful song.)

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