April 16, 2022

March-ish to April-ish 2022

 My face is back to normal now. Hooray. (She's says with lackluster.) At any rate, my brain is doing just fine. I just had my yearly MRI and the results are stable. What does that mean? Not a whole hell of a lot. The reason I have to have my brain looked at is that the disease progression of MS can be spotted on an MRI of the brain BEFORE it's noticed physically. But disease progression in other parts of the body that are controlled by the nerves in the spinal cord is usually noticed physically before you can see the progression on the spinal MRI. Are you confused yet? At any rate, I am STABLE and my brain more or less has the same amount of damage as last year. That being said, there is definite, noticeable brain atrophy, which gives more weight to the fact that I am losing my words more, and more often. 


The disease progression has gotten to the point where I will need another surgery. They need to remove some of my esophagus and intestines, plus it's time to remove some old scar tissue courtesy of my handy dandy connective tissue disease. It will be awesome to not feel like I'm being squeezed all the time and I'm ESPECIALLY looking forward to less vomiting. 

THEN, when THAT is done and over, I will be getting two more dental implants and another bone graft. I mean, can you even handle my glamorous life? I'm very excited about the whole teeth thing though because I've been waiting a long time. We had to get through 3 sets of braces and a wisdom tooth surgery before it was my turn. And our insurance resets on May 1 so there will be plenty of money for co-pays and such. 

In non-Caroline news, we are getting Thaddeus ready to send in his mission papers. He has been working really hard to get things in motion, including setting up his own doctor appointments. It's super helpful because work is crazy for both me and Troy. (And there I go making non-Caroline things into Caroline-centric things.) 

We are trying new meds for Blayne. We are switching to something a little stronger and hopefully a lot better at quieting some of the voices in our head. 

Daniel is doing great. He has his appointment set up on his birthday to get his drivers license. If you can keep a secret, I've been letting/making Daniel drive people places instead of me.  THAT'S WHAT YOU GET WHEN YOU GET A LICENSE.   

Taylor has been really getting into sewing and making clothes. She right this minute is making a gray bustier. She found a pattern she liked on Etsy, bought it, and immediately set to work. 

Which reminds me that I have to work in a few hours, so I need to get some sleep. Man alive, life really just gets crazier and crazier the older the kids get. 

March 21, 2022

March 21, 2022

 It's not been 9 months since I've updated the blog. Pfhht.  We have been up to the same old, same old and it is very boring. I guess in the beginning it wasn't very boring, but now we're used to all the changes so... BORED. 

Thaddeus is officially a high school graduate. He graduated a year early because he switched schools and they accepted work credits as electives, and he has been working since he was 15 so BOOM. Graduated. These days he's working a ton and fixing broken stuff all the time. My garage is a disaster. First, he had an old honda civic, then he had a truck. Now he has a motorcycle. The motorcycle doesn't work *yet* but it probably will be running sooner than later. Currently, he walks around the house in a motorcycle helmet because you have to break 'em in, especially if you have pokey-outy ears. He also moved out of the house for a bit, then realized maybe we're not so bad, so now he's back and a little bit nicer about stuff. 

Blayne is a junior and is back at a regular high school. We tried going to an alternative school for a while, but that was a little too much, so then we had to just, take a whole break from school for a few months while we focused on fixing our brain chemistry. Sorry, kiddo. After lots of come-to-Jesus talks and lots of closely monitored med adjustments, we are happy to say that Blayne is back at school (of their own volition) and it's hard some days and that's okay because we can do hard things. We can cry about it, complain about it, and hate every stinking minute, but we can do it. 

Daniel is a sophomore and is also the tallest person in the house. He is also in the process of growing a beard, but we/I would really like him to shave. I actually think his almost-beard would look better, because his facial hair is too fine, and it would look better all the same length. However, I'm just the mom so my suggestions are trash. He's doing well in school and is getting really interested in machining/manufacturing. He made a new knob for the stick shift in the Jeep. And he made a little hammer. He's actually pretty good are making things and figuring out how to get things to go together just right. 

Taylor has also been having some fun times with therapy and brain meds. Fun fact: since she was born so freaking early, she probably should have been in occupational therapy, like, all her life. But she wasn't, so now we're playing catch up, because while YOUR anxiety might make you cry, HER anxiety make her have pretty violent motor and vocal tics. (We've been to a LOT of brain people this last year.) Good news is that her tics have calmed down enough that she was able to go back to school. (Yes, we all took extended breaks from school, because I was not going to let her go to school while she was ticking so badly because kids are assholes.) ANYWAYS. Taylor is also back at school, part-time, and doing pretty well. Taylor is also in the process of maybe being diagnosed with autism, but maybe not, but she DOES have a neuro-cognitive processing disorder, and also a teeny splash of OCD/ADD. 

(Look, we just give all our money to therapists, okay? It's FINE.) And no, I won't elaborate any more than that because not really my story to tell, you know? 

I also had a job change and I'm now working for JetBlue Airlines and you guys? It kinda sucks. I mean, having a job and working from home is nice, but also not nice, because you're never NOT at work. It's a whole thing. I would tell you more about things, but I'm in the middle of an MS flare and I can't feel my bottom lips or the tip of my tongue and you guys? I WANT TO RIP MY FACE OFF. It's irritatingly painful and hurts the least if I leave my mouth open a little bit, but like, who want to sit with their mouth hanging open? WHO? The answer is nobody. 

I guess the most important familial event of the month is that Troy and I have been married for 20 years now, and that feels weird to say and I don't like it. Oh, and Troy is doing fine. Still working for the transit authority doing accounting things. That's the extent of my knowledge and interest. Do you have a job? Do you love it? No? Can you put up with it? Yes? Good. 

For real though, I'm going to go ice my face. because if more of my face is numb, it makes the MS numbness not as irritating. Again, Brains are stupid. 

The end. 

May 13, 2021

Life Updates 2.0

I am tired. I am really, REALLY tired. Of everything. Of nothing. Life has just been A LOT, and whenever I think I have one part figured out, then a new issue jumps the line, begging for attention. 

And I'm just DONE. 

Currently keeping me awake at night are worries about whether or not to vaccinate Blayne for COVID. (I'm vaccinated. So is Troy. And Thaddeus) Because on the one hand YES! Vaccines! Hooray! But on the other hand: covid psychosis. Because people with a history of certain things (hello hallucinations) have a higher risk of triggering a very scary and severe psychosis. 

Another thing keeping me awake is Taylor, who has developed a tic. Which is going to be a fun rabbit hole of a health history deep dive, to try and figure out what the underlying cause is. Is this because she was born 8 weeks prematurely? Maybe it's her history of strep. There's also the autoimmune factor. But what if it's an allergy? Or maybe this is because she had Lyme disease when we lived in Virginia. Or maybe it's because of her chronic kidney disease. What if she's allergic to all the grains too? Maybe she has inherited my MS. Maybe it's all of those. Maybe it's none of those. 

And while we're at it, let's add in an existential crisis wherein I am trying so, so hard to grapple with faith and humanity and am continually, but unsurprisingly, disappointed in both. 

Oh, and let's not forget to mention that Thaddeus moved out.  Because of COURSE he did. He is officially an emancipated minor and wants to succeed in life, on his own, without anybody's help.  Naturally, that relationship has changed and we now have Thaddeus over for Sunday night dinner and games, and he sometimes visits during the week. 

Also, school will be out soon, and we have been figuring out our summer schedules. Blayne, Daniel, and Taylor are all taking summer school to get a few more credits under their belts. Plus, they would prefer to do PE/Fit for Life classes at home, instead of at school, and I can't say I blame them. 

Meanwhile, I'm just working a ton and trying to keep clients happy. The garden is going great. The chickens are fine. (Dottie has gone broody TWICE though. I swear if she does it a third time, she will have to go live somewhere else.) We've also been keeping track of our passport applications, and the CDC traveling requirements. We have a trip to Mexico scheduled in a couple of months, but who knows if it will be cancelled or not. LIFE IS JUST SO EXCITING.