Category: wedding

Wedded Bliss & A Crazy 2014

Posted on by Grayson

I can’t believe I’ve been married over a fortnight. It’s all a little weird. Aside from feeling more comfortable in my relationship, I didn’t think anything would really change. And yet, here I sit feeling like a very different me than I expected. Some of that, no doubt, comes from the fact that I spent so much time thinking about and planning this wedding that I feel a little empty now. I’m not sure what to do with myself, other than to mother our new guinea pigs Gus Gus and Jaq… which means they’re kind of possibly spoiled piggies.

The wedding went so much better than I could’ve ever expected. There was no drama. Things did actually stay pretty close to our schedule. I got to spend time with each of the important people in my life, and those people all got to meet each other. I danced most of the night, but what can you expect when they send a DJ who could be your musical twin and teaches you how to do the dances? I got to dance with my sisters, even the ones who aren’t related to me at all, and with the awesome men in my life. I also got to spend some time with some of the cool spoonies I know, for which I’ll always be grateful.

One of my favorite parts was being able to dance with my dad, even for a short time. For most girls, that’s a no-brainer. Personally, I wasn’t sure that would ever happen. You see, up until the beginning of August I had never gotten to meet my dad, and I had only talked to him a few times. I feel like I share an awful lot with you guys, but I haven’t been able to share everything lately. One of the big things I learned this year was that there was a reason my little family seemed askew, and it’s definitely been a part of the lack of new posts here. I really don’t want to go into too much detail, because it’s hard and I’m still recognizing a lot of it, but I learned that abuse comes in many forms. Dysfunction and abuse are different. Unfortunately, most abusers do not change and we have to cut off contact to live our lives safely and happily. My dad didn’t even know I existed until I was five, until this disease had hit and brought with it too many bills to handle. A custody battle ensued. They were told I was fine and happy where I was, while I was told he only wanted custody so he didn’t have to pay child support. I was told growing up that the lack of insurance was why I couldn’t try new things or get hurt, when dad had to keep insurance on me the whole time. I didn’t see a doctor or dentist from the time I was maybe eight until I was a senior in college, due to that supposed lack of insurance, and now have spent a very large amount of time and money to try to fix those things… which I’m still working on. My dad gave us money so I could get a hot tub to do water therapy daily. The money was spent elsewhere, and that was always a dangling promise *if* I did well enough or acted nicely enough. I’ve already talked a little about the abuse I’ve gone through due to people outside of the family too, and I’ve realized a little more about who knew things about that and didn’t do anything. I could go on, but I won’t, mostly because it’s hard. I don’t want to be a bitter person or focus on the past, as much as it seems it would be good to get a lot of it out.

I won’t lie – I’m having a hard time dealing with everything. Dealing with coming to terms with how I grew up is being very difficult, and part of me is so very angry. I feel like I’m having to discover who I really am now too, and that’s not an easy thing to do when you’re in the middle of living your life! It’s a lot to take in a very short amount of time, especially when I’m physically feeling okay. I wish my physical pain matched my emotional turmoil. It usually does, and the fact that it really isn’t is both great and unsettling since I’m so used to it.

I think one of the most comforting things to know is that I am not alone in anything I do now like I felt I was growing up. I’m so grateful to have a sister I’ve known since she was born, and now to add a brother and another sister onto that is amazing. I have a dad and a stepmom who are more amazing than I could’ve hoped for. I don’t know that I could be their kid more than I am if they had raised me. I have T’s family, who are so caring and so helpful. I have some of the best friends in the world, including other spoonies and the person who helped me to really open up my eyes to the abuse I’ve gone through and has really and truly helped me get through all this without going bonkers. And, of course, I have T too.

All these great people make up my FOC, or Family of Choice. I couldn’t be happier to have them as a part of my life going forward.

A lot of changes

Posted on by Grayson

Fun things I’ve been up to:

  • Moving this week (until Monday)
  • Unpacking and getting organized (forever)
  • Skipping my Cimzia because I’m bad and didn’t want to do the shot in the middle of moving so I’m on my fourth week post-shot. The med is working well for me though, so that’s happy news.
  • Practicing my ukulele because I’ll be performing in public for a few performances later in the month (WHAT)
  • Finalizing a bunch of the wedding planning – alterations and a hair trial at the end of the month and I still have to buy a good amount of stuff for decoration, etc. Shower and bachelorette party are coming up too!
  • Cutting toxic people out of my life. I may elaborate in the future, but I’ve come to realize who I want to spend spoons on and who sucks the life out of me. Life is too short, especially with limited spoons, right?
  • Starting PT again because my left knee just sucks. He’s got me doing a lot to strengthen the left hip, because he thinks that is where a lot of the issue is coming from. He also thinks that my leg length discrepancy is actually caused by my scoliosis and not the other way around – laying down it’s only maybe 1/8 of an inch, so that makes sense.
  • I want to revamp the site a little bit, so please feel free to share information on what would be helpful for you to have easy access to (journal articles? doctor lists? JA resources?)
All in all, I’m feeling like a chicken without a head haha. Things will improve at the very least after the move is over, and I really get down to business on the other things.
Hope you’re all doing well!

A long, long update

Posted on by Grayson

So, let’s see, when was the last time we really talked?

Oh. Oh my.

Well, I started a new job at the end of July. That’s been going well, though I will say it is stressful compared to my last job as I actually do things and have responsibilities now. I’m working in the office of a department at a local university. I love it – and, more specifically, I like being able to pay all my bills and cut down on some of my debt!

In August, we got our engagement pictures done and holy crap you guys I have just under 8 months to plan this shizzzzzzzzz. There has been some drama (i.e., we picked a florist and then she bailed) but we have plenty of time to recover I hope. I have no idea how to pull together some of this stuff and stuff our ideas into the melting pot of love… which sounded less perverted in my head haha.

September saw me feeling the best I’ve ever felt in my entire life. I was running – sometimes up to a mile! – throughout a chunk of time at the gym. We went hiking several times and it was tons of fun… My inflammation levels were all low, and my pain was controlled! Everything looked great…

But then, thanks to my new job, I got new insurance and that required a prior auth on my lyrica – which we had to go through 2 months in a row because they don’t freaking know how to do paperwork over there. Pain levels were high, and the stress that brought (and other crap) didn’t help things. December saw me with high inflammation levels and the enbrel wasn’t doing a thing to help with it.

The last few months have seen us facing a number of high stress and scary incidents too – my mother was in a terrible car accident that she miraculously escaped with bruises and a concussion, but has her a little road-weary. My step-dad had to have further surgery for his diabetes and things aren’t looking great on that front. T’s aunt saw her breast cancer return, with a stage 4 status, and then this past Sunday suffered a minor stroke. T’s had some of his own health issues, and it has been hard to watch him deal with those. On top of all of that, we have the wedding planning and more. I just have been feeling so emotionally overwhelmed but everyone says crap like ‘be strong’ and so I don’t show it or share it.

The last few weeks have been enormously hard emotionally as well, dealing with the year anniversary of Laura’s death. I had thought it would be easier when we got to a year – that things would sink in. It would still be sad, but maybe we could all really start to heal. Now that I’m a few weeks removed from that day, I am emotionally feeling better, but still very raw.

I had a terrible dream on the anniversary of her death. T and I were on a cruise and there was some emergency that we of course were sure was just precautionary. He runs to go take a look and calls out my name in the most unnerving tone of voice, and I turn from what I’m doing to see that the boat is sinking. Unsurprisingly, my heart sinks and I have that ‘holy shit I’m going to die’ realization. When I woke up from the combination of the nightmare and my sky-high pain levels, I never had that comforting ‘oh oh good, it was all just a horrible dream’ feeling. I’m constantly on edge and, if the topic of death or the meaning of life or any of that existential crisis crap should happen to pop up, I’m incredibly sensitive to it – like in the freeze up, panic attack type way. This is the first time I’m really talking about it with anyone, but it’s also gotten better as of late for the most part. I sometimes have existential crises, but they’re often short in nature (i.e., not even a whole day) so this has been hard to deal with. I’m thankful my nighttime meds are back in force, and I can really sleep throughout the night.

The Friday after, between work and everything else, I had a breakdown the likes of which T has never seen before. I’m sure I cried for like an hour and I felt better afterwards, but damn. It was hard to be that vulnerable and I’d like to avoid it whenever possible… though I didn’t mind the nice things he said to cheer me up. I’m lucky I have him for sure.

My pain levels are getting back under control, but my inflammation is not. I’ll be switching to Orencia in January/February depending on how long it takes them to prior auth that. I just got all the info in the mail from the company that makes it. I’m nervous, but ready to just move on to something that works and hopefully doesn’t make me feel like crap when I take it like the enbrel has been doing lately.

Are you ready for the good news? Me too!

I’ve been asked to be a part of a panel on juvenile arthritis for our local Arthritis Foundation chapter in February, so I’ve been doing a lot of research on the transition from childhood care to adulthood and all that fun stuff. Oddly enough, it is fun for me to read all this info. I’ll be doing more with that here as well.

As a part of that, I spoke with a pediatrician in Ohio who deals specifically with SJIA/Still’s (and MAS). It was a refreshing conversation, and he agreed that there needs to be a focus on how to be a healthy adult for these kids transitioning. He also passed along some medical research to share with my rheumy, and has graciously opened up his brain for me to pick. I’m really quite pleased that he agreed to speak with me.

And I’m a little afraid of what I’ve just signed on to do, but I have made it a goal to run a 5k in May raising money for the Arthritis National Research Foundation, who donates 91 cents on the dollar to research. They’ve made some important breakthroughs lately, so I’m excited to help be a part of that (I think? I’m tired haha)! If you’d like to donate to the cause (or join us!), come check it out!

I feel like this totally turned into one of those super annoying Christmas letters, save that I didn’t tell you about anyone’s goiters or corns or enemas… for now.

Something Borrowed, Something Blue

Posted on by Grayson

It’s 663 days until I get married. All the crazy emotions that I didn’t necessarily go through a month ago when he proposed are slowly making their way out now.

I knew from the minute I met him that I’d spend the rest of my life with him, so maybe it is finally really hitting home as the ring has dug its place into my finger and I really start looking at venues and ways to make things cheaper myself.

(Can we talk for a minute that I’m actually wearing a ring 24/7? I didn’t think that would happen. Awesome.)

Perhaps it is the reality of a wedding as a chronically ill person hitting me instead, or the idea of spending my life with someone when statistically speaking I’ll live a shorter life. Maybe it’s just the fall-going-into-winter-blues or some combination of everything.

In any case, I’m freaking out and having existential crises all over the place. I’m sure it doesn’t help that I’ve been dealing with a lot of pain and fucking disease issues lately so I’ve missed more work and feel in general pretty useless. It’s really hard to be positive and look on the bright side when you can’t do what you want or what you need to do – and even how much worse things can/could/might get. I’m tired of being no negative and feeling so angry all.the.time.

As far as weddings go, we went to two this year. Well, one I officiated in January because I’m a freaking minister (yuuuup) and the other we went to and I had no role. In between the ceremonies and the receptions for both, I had to rest. I’m not talking just go and have a sit down – we’re talking like borderline napping. I danced a bunch at the one in January, drank a little, but also kept going up to our hotel room to rest again. I missed most of the reception at the one in September because of resting and skipping out on the dinner because of my food allergies. Between the time at the ceremony and the reception, we were there maybe an hour and a half to two hours.

How in the fuck am I going to dance at my own wedding? How am I going to have energy to take picture and visit with friends & family? How am I going to be what the bride typically is – the life of the party? I have a long time to worry about this and a long time to get better or to get worse, to switch meds or to need surgeries. I would love to put this from my mind. I really would.

I had some of the other important questions answered by my body already – I’m clearly not rocking the high heels and in all honesty probably won’t be wearing any shoes walking down the aisle. If I do, they’ll be converse or flip flops. I don’t want to worry about tripping all over my dress so I’d really like something tea length or at least higher than my feet. But then in looking at dresses, that’s not what I’m drawn to.

I’m torn between having the wedding I probably need and the wedding I’ve always wanted. Growing up, I knew I was sick and I knew the kinds of things that could happen to me. I either never thought it would affect me getting married or I readily assumed I was broken enough (emotionally and physically) that no one would want to even entertain the idea of spending the rest of their life having to most likely take care of me.

I always dreamed of my wedding day as a big celebration with all my family and friends. I envisioned getting married on a beach or in a lush garden. I thought that my reception would be full of fun and dancing and love. I would dance all night with the people I care most about until I’m whisked away by my new husband to our hotel. Reality dictates that it is going to be much different. Reality has already dictated my life is to be far different than I had planned or scheduled or even paid for. Eighty thousand in school loans, with half being for a masters degree I couldn’t even get halfway through, can prove that. A job working in a call center for 10 bucks an hour instead of working in education or public policy or anything else can prove it too.

Arthur has done so much to rob me of experiences and accomplishments. I don’t think it is fair for it to be robbing me of my wedding plans before I even can make them.

Son of a bitch is about to get kneecapped.

One ring to rule them all

Posted on by Grayson

The boyfriend and I went on a trip for our 5 year anniversary to Dubuque, Iowa. We’ve been planning it for a little bit cause I decided I wanted us to do something special. And why Dubuque? Because it’s on the Mighty Mississip. Stop asking silly questions.

Friday was kind of the best day of my life for several reasons. I felt really good all day and that was nice. Plus I broke out a cute outfit I hadn’t worn yet and I must admit I was rocking it hard core. We stopped at the car place to get a new battery, then I got a pumpkin spice latte and then a gluten free pumpkin muffin. I also got tweeted at by one of our favorite comic makers, Mister Ryan North of Dinosaur Comics. BAM!

Oh, and I ate freaking amazing gluten free pizza at Pizza Ranch.

Mmmmmmmmm pizzzzaaaaa.

Once we got to Dubuque, we explored the National Mississippi River Museum – and Aquarium! – and I totally freaked out because there were super cute otters yawning at me and also snuggling. I had a Kristen Bell sloth moment. If you feel out of the loop, click here… though I will say it was like towards the end when Ellen tricks her and not when she’s fetal in case you were worried.

There were so many things there though! The coolest was probably between the otters, the huge abundance of turtles, and this giant fish that probably could have eaten Theron.

HOLY CRAP IT’S A FISH YOU GUYS!

There was a steam boat there too! It was pouring down rain and I was in flip flops (Theron: what else?) which meant I was slipping and sliding and my left leg is still a little sore from almost biffing it on some stairs.

We stopped in a casino and blew literally a single dollar on slots, thought it was stupid and left. (Theron says I’m failing to mention that we won ten cents… which then basically got added to our slot credits. Is that really winning?)

We went back to the hotel for a little bit before heading to Carlos O’Kelly’s (yes this is a real place) and I got a jumbo margarita!

Then we went for a walk around downtown, chasing steeples and golden domes before making our way to the Fenelon Place Elevator.

Especially at night!!!

We got up there a little after dusk and it was really pretty. It was cool to see all the places we had walked around from such a great view. We walked around the block up there and it was nice. The houses were really fancy though. We headed back to the overlook spot for a bit before we went back down.

I will admit I had kind of a feeling about what was coming. 2 different times Theron really wanted to go to the store by himself and I thought that was pretty silly cause he always makes me drive. But in all seriousness, after our walk around the block I sensed what was going to happen with my sloth skills.

Theron was talking about how it was pretty up at the overlook and then that I was pretty and I was all psssssshhhhhhhhhhhhh.

And then he was all “I like going on trips with you.”

Me: “Yeah, it’s pretty fun.”

Him: “You know what would be cool?” *cue hug from behind* “Going on trips forever with you.”

*ring box to the face*

Okay, it didn’t hit me in the face but it was all up in my face and I was all “Is this a joke? There isn’t an onion ring in there right?”

For a good ten minutes, I felt the need to double check that he did indeed ask me to marry him… as it was more of a statement and I was like freaking out kind of inside. After much kissing, he reminded me that I didn’t really answer his (not-really) question to which I replied “okay” like a four year old.

 

You totally do not have a ring as cool as this one.
There was much kissing and snuggling to be had.
The ring is sapphire with little diamonds on the side. It is so pretty. Theron got the sapphire because we met in September and because I like blue and he says blue looks good on me cause of my eyes 🙂

So Saturday we kind of alerted everyone on Facebook and Twitter (well, I did anyhow :-p). Then we did some more exploring – riding a trolley, walking along the Mississippi, staring into three states at one time, and more gluten free pizza (can you have too much pizza? I think not). We also found the Knippel store.

And it’s right next to Hammer Time!

 

And we of course rode the elevator again where I got this fancy pants shot:

My phone is fancy with panoramas!

 

And then I took this of myself because I felt like it.

Damn, I’m hot. I would want to marry me too.

Then today we hiked around – like literally hiked.

Think this times a bunch and add some stone steps too. Yeaaaaah.

 

I haven’t been able to do that in a really long time. I was out of shape and my left leg, still unhappy over Friday’s slipping, was pretty close to a breakdown. But I am very grateful for everything that happened this weekend and I can’t wait to spend the rest of my life with the boyfriend… I guess fiance?

For now, it’s time for Monty Python and the Holy Grail.

Life of a Spoonie!