Sunday, September 23, 2012

One ring to rule them all

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!

Thursday, September 20, 2012

It's amazing what happens in 5 years


Guess whose anniversary is today?

Yup!

Next month I will have been blogging for five years - though the first 2 just about was over at How to Ace Life and my topics were a lot more varied. A lot of it dealt with my studies or interesting news stories or Iran, Palestine, and Israel. I started blogging because the boyfriend was blogging...

Oh wait! It's THAT anniversary!

Today marks 5 years of dating the boyfriend. The last 5 years has brought us a lot of different things, from hiking and vacationing to urgent care trips and injections, from moving in together and grocery trips to unbearable pain and sleeping all day.

I wish that some of that didn't factor into our relationship so much. But in a way I'm glad that it does. Anyone I dated before had no grasp of what I was going through - to be fair, I don't think anyone can truly understand unless they go through it too. The boyfriend goes through it with me though. He does so much to help me and I just don't even have words for how important that is.

Today is our last day of work and then we have a 3 day weekend getaway planned. Part of me is nervous just due to how I've been feeling lately. I'm so tired all the time and I worry that going away for the weekend might not be the best idea... even if it was kind of my idea to start with. But we also don't have any concrete plans. As much as I wouldn't want to go away for the weekend just to sleep in a hotel room, that is an option :-p Hopefully things go better though.

For now, I get to get ready for work. BAH!

Friday, September 14, 2012

Fibromyalgia Suuuucccckksss

Another week gone by and no posting. AH!

In truth, I haven't been blogging as much due to my hand pain... which I've just found out is fibromyalgia after months of complaining of hand pain and pain in the hips, inner knees, neck, etc, etc, etc. I think part of the problem is I tend to see my rheumy and then her NP and then her again and so forth. I also think that my rheumy, while awesome, has some selective hearing in that she hears the complaints she thinks are vital to address and ignores the others. Kathy, her NP, is a little better at looking at the things I feel are important. I also feel like we tend to get along better and, as the wife of someone with chronic pains, she seems to understand me more.

YAY!

So I met with her on Monday to evaluate what was going on with me after a note I sent to my rheumy regarding my latest health issues and huge amount of pain. One of the things I've learned about Kathy is that she also appreciates my experience with my illness and so if I bring in evidence - a picture, notes, etc - she is more apt to look at them. I spent Sunday night writing up a two page list of what was going on with me, highlighting the most important things to me first. She took the time to read, highlight, and ask me to expand on my carefully worded bullet points. She then took it and made it a part of my medical file all without me asking her.

I seriously love this woman.

We went through a very thorough exam, where she meticulously checked my hands first before moving onto a whole body exam. I had some swelling in my left wrist and another lower body joint I don't remember. However, she also checked the trigger/tender spots for fibro and the majority of them were tender - and some hurt so badly that I yelped. And I have a pretty good tolerance for pain.

She ordered a ton of labs to make sure that it wasn't anything else and also had me get a kenalog shot right in the butt. My tests all came back clear, with the exception of my sed rate which is always high and my CRP which, until now, has never had a value attached to it for me.

I also got some gabapentin to start taking. I was nervous about this med at the beginning because I had done some research for a friend and her daughter on it. But now I definitely have different thoughts. I'm only taking it at bedtime for now and while I feel that it's helping I a) can't super tell if it's helping because then I go to bed and am not using my hands and such, and b) still am waking up very groggy to the point where I'm tripping over myself and basically am asleep while trying to put myself together to drive the boyfriend to work and whatnot.

But tomorrow I will conduct an experiment. Instead of taking only 100 milligrams of gabby (my new drug street name, you like?), I'm going to also take a dose during the daytime to see how drowsy it makes me. If it is really helping my body not hurt as much, there is no place that needs to happen more than at work - where I spend the bulk of my day like friggin' typing. Oy.

I miss my pain the way it was when I was younger. It was mainly in my lower extremities, so I learned to do more with my hands. Instead of going out to play with a swollen knee, I fell in love with trivia computer games and such things. Now even that is hard for me and it is really tough to handle. I can't really run away from my illness the way I used to be able to. I actually have to admit that I have a disease - well, now 2 diseases - that very often cause disability. I don't like that thought at all as a 24-year-old.

Ugh.

Saturday, September 8, 2012

JAFN & Meeting Mia

Today I had the wonderful ability to meet up with two other families and another young adult affected by juvenile arthritis. I met Nathan, a 10-year-old with uveitis, as well as Stephanie, a young woman about my age who was lucky enough to be working the JA Conference in St Louis this year.

We all shared stories about our experiences with JA and offered each other advice. It was a small group, but I think that helped for us to really spend time together. It was one of the most wonderful experiences I've ever had. When I was diagnosed, the internet was pretty new and to be able to connect with kids who I can identify with was really cool.

The other family I was lucky to meet was one that I've gotten to know better over the summer. Mia is a sweet little girl, a toddler, who has been dealing with Still's for so much of her life. She is so cute, holy cow. Mia brought her mommy Megan and her auntie - who has AS - along for the ride too.

I have met a few other people from my blog in person, but not many. And no one that I have met has systemic/Still's - or has been this young.

She is so cute, ohmigosh
The five of us (I brought the boyfriend along too) went out to lunch and had a really nice time. I think it was great for all of us. Megan's sister and I were able to talk about dealing with changes as adults and the difficulties there, while Megan and I were able to talk about Mia's rashes and fevers. And I think Mia just loved making faces at me :)

I cannot wait to be even more of a part in the lives of Megan, Mia, and their family. I think it will be a good thing Mia and myself. I will be able to watch the disease from a more outside perspective, which will be interesting. And maybe I can be kind of a mentor and help her through the tougher times (that I just really hope she doesn't even get to face and I can be just a fun friend).

This all just helps to hammer home for me the importance of the raising awareness and keeping up the search for a cure. She is so young and full of life. I want her to be able to accomplish all of her dreams and not feel held back by her illness. On a related note, I'm applying for a job with the Arthritis Foundation that I found out about this morning. Ohh yeah!

Thank you Megan and Mia for coming down and visiting with us! If you want to learn more about their story, please check out their blog here.

Thursday, September 6, 2012

#Rheum Blues

Oy.

The last month being back on Enbrel is tricky for me. I have torn feelings for sure. I mean, my swelling has gone down and this is clearly awesome. I enjoy being able to move joints. But I'm still in a huge amount of pain.

I have an appointment on Monday afternoon with my rheumy's nurse practitioner to evaluate if this pain is a flare up of my Still's or if it is instead myofascial pain or fibromyalgia or something else.

First off, I've had Still's for 19 years (well, in a month) and I have never had a flare up without intense swelling. I just haven't. And right now, I'm not experiencing that at all... with the exception of my bum left knee which, let's face it, swells no matter what I do.

But now I'm torn. Is this just fibro? Is is MS and I just don't want to know so I ignore the signs? Is it something worse? Am I turning into an elephant?

UGH.

I try to act like I'm okay and just push through like I've always done, but Sunday was the last straw... because I missed Missy's blessing.

I knew when I woke up that the day was going to be trouble but not wanting to disappoint family or incur the fire of a thousand suns, I got dressed up anyway. I also really wanted to be there. I love this kid.

While we were at the church and waiting for family, my body started getting worse and worse. My fatigue kept dragging me between the living world and purgatory and I was in so much pain. It was all over. My hands were the worst but my hips, my neck, my ankles - everything ached. I just couldn't do it. It took a lot of coaxing and reassurance from the boyfriend before I felt okay to say that I needed to go home. Even then, on the ride home I was so mad at myself. I kept going between sleeping and crying the hardest I have done in a long, long time. And the day was just so shitty. Wah.

My illness and I have grown up together. We give nods to each other when the other is in control, letting us know that we are around still and not to get too comfy. I have always pushed myself to keep going - run that last mile, climb that last step, dance that last dance. Stopping grad school was hard enough, but it was a sacrifice I was willing to make to stay sane and healthier. I thought that it would really help.

But I just keep getting sicker. And now it's starting to negatively impact the role that I will have in my niece's life. I want so much to be there for her - to help provide some things she might not get otherwise like auntie dates to go see new movies or stopping for ice cream on the way home without telling mommy (tee hee). I want to push her to excel, to show her that no matter what she can do anything and nothing can hold her back. I want to be a role model for her.

But how can I do that if I'm not there because I'm held back by this illness? How can we stop for ice cream if I can't drive anymore cause it hurts too much?

I'm so tired of fighting myself all the time. My body just needs to figure its shit out already for cricket's sake. But it won't and I know that. It's just hard to let other people see how bad things are getting for me. I don't want to be the center of attention and I shouldn't be. That's not my life and I don't want it to be. I want to just be treated like a normal person.

I can't just be in constant pain anymore. I can't take it. I need a break.

On a related note: half of one of my nine remaining oxy-whatevers plus an extra dose of etodolac on a full stomach makes me not throw up and also helped me to forget about pain for a while tonight. It was still there sure, but I didn't notice as much and I so needed that break.

Also, had a kick-ass appt with my OT today on my hands. My hands are covered in bright blue kinesio tape! And she might even use me as a case study presentation thingy. Sweeeet.