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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. 😊

What Did I Want From My Divorce?

Even a year ago I wouldn’t have believed I’d now be a divorced woman. Back then I didn’t even realize that part of what I thought of as my identity was wrapped up in being a wife. I honestly didn’t realize that until my lawyer asked me what I wanted out of my divorce after the judge rejected the first filing (sorry, I share a lot but some details need to stay private).

I actually paused for a few and had to sit down after the lawyer asked me that question. What does a person want from their (childless) divorce? I mean, we divided assets, divided pets and pictures, and left behind bits of one another and our pasts. We were all ready divided in person and just waiting for the legal world to be able to work during a pandemic to make it official. What else is there?

My therapist says I’ve made years of progress in a few months because of how much I’ve assessed and realized since July. I made another leap that day when I realized that I wanted “me” back. I wasn’t the person who was “the other half”. Nor was I the person I saw in his eyes or the person described in the rumors running through town. I don’t know why at some point I decided that I was supposed to be a reflection of the person I thought he wanted me to be. Or why I allowed myself to live on autopilot. I can’t even pinpoint when “me” wasn’t someone others from my past saw or heard anymore.

So I said I wanted to find a quick resolution that the judge would agree to that would be as close to the original agreement my ex and I made when we hashed out the nasty details of divorce. I had all ready transformed a lot since I had decided to leave, but knew that deep down I needed that page from court to make “The End” to our book together, because I was in another book and still needed to finish finding the real me that was hidden in all the corners of my habits, perceived flaws, and transformations.

I’ve learned that I’m still into gaming and can have a lot of fun beating the tar out of guys on Super Smash Brothers. I finally made peace with my miscarriages and abuse when my future stepson put the memorial ornament next to the “our first Christmas” ornament on the tree last December, “…because they are part of our family, too”. Nothing like youthful innocence to make you see the truth or wonder why you were ever ashamed in the past, or to realize just how blessed you are to have such beautiful souls in your life.

I was surprised to learn that I’m not a Misfit Toy, either. I’ve spent years feeling like one. I just wasn’t around others like me that enjoyed and celebrated the truest parts of me, most of the time. I’m blessed to have one man and two young men that are patiently helping me get reacquainted with myself. I’m nerdy and encouraged to continue pursuing a variety of educational and creative endeavors without the slightest feeling of anything but pride. I learned that I’m not just a people pleaser because I have self esteem issues. It’s also one of my main love languages. I don’t dress to impress and often wear what my fibro tells my body feels okay today without feeling like a slob or like a town may judge me; my stepson loves to wear different colored socks on each foot every single day because “why not?”. *grin* And I don’t lose myself in a pixel world because I’m escaping life. I do it because I have fun and it’s another creative outlet for me, plus I have the bonus of getting to interact with others and even make special moments with my family and friends in them. If I feel like dressing like wearing a vampire killing kit tee with leggings; or a hi-lo sweater with lace cami, skinny jeans, and boots; no judgment. Being a spiritual mutt who is still finding my way is super okay too, along with my obsession with some fandoms and my love of putting labels on everything/everywhere.

I can’t pinpoint when I put on the mask and started to cover up that I wasn’t happy or all right anymore. I’ve been sick and that’s what everyone thought was what was wrong when my mask slipped. I wasn’t going to just wait to die, because although I’m sick and disabled, I have a lot of living left to do, no matter how many days I have ahead of me! I don’t want to just have an avatar that has adventures I admire or does the things I wish I could. Sure, I can’t do a lot of what she can, but I can sure fill the rest of my life book with adventures and happy memories, instead of wishes. And I literally have mini adventures written down for us to do every single month of the rest of this year. It’s not just a trip a year to look forward to and keep me going.

This is the real me. The one that is planning for big family trips, day trips, and sporting events; Just Dance and Ticket to Ride competitions, gaming nights once a month with friends, or saving spoons all week so I can help teach my stepson to make soaps, do a chemistry experiment, or art project. I researched and made a shadow box of stones to help keep the nightmares away, with the properties of every stone written out for him to read and find comfort from. I learned how to lure the teenager out of his bedroom for a little bit every so often and actually get him to linger.

As one of my best friend’s most helpful quotes said, “When a flower doesn’t bloom, you fix the environment in which it grows, not the flower”. (Alexander Den Heijer) I am blossoming because I’m finally in the right place, at the right time in my life. I AM the silver lining in some situations, I matter every single moment, I am loved, and most importantly, I’m honest with myself and the world. I may love POTO, but I don’t have to live behind a mask. I actually like “me”. I guess that’s what I really wanted out of divorce. I wanted to like myself again.

My Christmas Wish

A Scary Time

I’ve debated about writing this post for probably close to two weeks now.  It’s quite simply been a scary time for me and I didn’t know if I wanted to put that vulnerability out there, but as I was saying my daily prayer, which includes a prayer to expand my opportunities and benefit to others, and it dawned on me that this post might help someone out there who is looking up these tags.  Therefore, I’m laying it all out.

 

I have a new doctor that is systematically trying to go through each medication and condition that I have, and trying to find out if I have other underlying conditions that are being masked by these medications or have gone undiagnosed.  After a 20+ year history of taking antacids and preventatives for reflux, which finally got diagnosed as GERD about 5 years ago, she decided to change my preventative, which no other doctor has done since I was diagnosed with an Esophageal Ulcer in my teens (without a GI consult, mind you).  I have just taken whatever works until it doesn’t and then switch, and my long list of doctors couldn’t have cared less as long as I kept them informed as to which medication was currently keeping the reflux, vomiting, and nausea at a liveable level.  She also took me off of my Marinol (synthetic THC), which brought back a fair portion of the nausea and vomiting.  The reflux medication she prescribed didn’t work, just like I told her it wouldn’t, sit I’d tried it 15 years ago, so she changed it to a prescription strength of one that usually works for me and then said there was something else going on that needs to be investigated to be causing this.  Keep in mind she believes in Fibro, treats it, and everything, so she knows it can happen it Fibro, but doesn’t believe it should be so uncontrolled that I need Marinol to keep my symptoms at bay.  She has scheduled me for an endoscopy of the esophagus and stomach.  “We need to figure out what is going on.”  So me being the nerd that I am, especially with the medical background, started researching EGD (the procedure) and then found a lot of articles from reputable sites (as in, the ones that the neuro office used when I worked there) about the causes of symptoms that lead to this procedure.  It turns out I have a lot of risk factors on board and a lot of my unexplained symptoms that the other doctors never paid attention to when I mentioned them were all red flags saying I needed this scope.  Long story short, due to all of my medical history and complications, I have around an 80% chance of having stomach cancer that has gone undiagnosed for at least a little while, if not quite some time.  It could actually explain why my Fibro has progressed so intensely while I was still young and why it is so debilitating now.  It could explain this continual cycle I’m in right now of getting really sick, then seeming to recover, and then starting back over.

 

I don’t react to things like a normal person, I’m the first person to admit that.  There was a reason that I was awesome as a Risk Analyst for HIPAA at the office.  I am that worst scenario kind of girl that usually has pretty bad luck, so I tend to prepare for the worst.  It prevents me from shattering in front of others when I don’t want to (what can I say, I’m an introvert, so I’d rather keep that to myself or apparently share it in writing for the world to see *small laugh*).  Also, if things turn out to be just a little bad, then it’s a big relief and things will be a lot easier to handle.  I HATE being unprepared for anything, but most especially my health, since there are so many parts that, excuse the wording, makes life kind of shitty sometimes, most especially if it’s a new diagnosis that I was blind sided by.  So I’m looking at that 80% chance right now and going off of that.  I did a cross research of survivability of stomach cancer with all of my health issues, which didn’t come up exactly, but came up with enough that left me without a lot of hope honestly.  And before you say it I know there’s at least a 20% chance that it’s something small and fixable, I KNOW, but I’m that other kind of person that prepares for the 80% with 100% failure later.  I’ve kind of distanced myself from it and am just analytical about most of it.  I have a to do list of things that must be done in case I die and I’m working on it.  Some think it’s morbid and it’s hard for others to even imagine doing such a thing, but I’ve had 2 friends die from health issues all ready that were younger than me and let’s face it, my health pretty much sucks.  I don’t try to seem morbid; I’m literally just focused on what I need to do, how to handle things, and it’s my way of coping.  It’s the only thing I’m actually in control of now, if you really think about it.  So I’m working on getting my car title changed to my married name so that my husband won’t have to fight probate for it, I’m working on an instruction manual for the household appliances and cleaning that he has never done, and I’m working on making these the best holidays ever.

 

I want togetherness and happiness, just in case this is my last one.  Hang every ornament while remembering how it came into our family.  Have a deliberate reason behind each gift instead of it just being about commercialism.  Our Christmas tree stays lit almost around the clock because of my love of Christmas lights and we even got a strobe of snowflakes that should be outside, but he kept it inside so I can sit and watch those lights too, and try not to miss too many chances to bask in the comfort of those lights.  This year it’s all about the love of our tiny family.  By Christmas Day I should have my results, since my test is just under two weeks away, but until then, I’m going to keep coping.  I’m also going to keep cherishing every moment with my family, my loving and insane fur babies, and enjoy every little ounce of Christmas cheer that I can.  Maybe we should always act like it’s our last one, since anything can happen.  I know that as soon as I started treating it as such my heart seemed to overflow, feeling too big for my body or soul.  I count my blessings and stop to see the beauty all around me.  And maybe this is the impact that I can share.  While a little bit of my heart is tearing itself apart over the thought of losing those I love, my little life, and the moments I might miss, the rest stays focused and works on my end of life goals because of the love in my life.  I want to protect them if I’m unable to handle these things later.  I love them too much to leave it unresolved and in their lap.  So if you’re going through a really tough time too, focus on the love and let it guide you.  And cope however you need to no matter what anyone else says!  You do YOU and just try to get through this however you can.  And if you feel alone, just reach out.  It can be a relative, a counselor, or even to me.  For me, though, I’m going to do my to do list and then make sure everything is easy peasy for Christmas Day so we can just spend time together and have our grinchy hearts grow two sizes too big from all of the love.  🙂

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