Something Borrowed, Something Blue

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.

Savor the Flavour

So last night the fiance and I went to the 14th Annual Savor the Flavour event to benefit the Arthritis Foundation. It was pretty cool, especially with it being a wine tasting.

Mmm wine.

What? Oh sorry.

I had a great time despite feeling very under-dressed, under-money-ed, and under-prepared.

I wish I could go back over my speech and that I could have made it better. I should have prepared by reading it out loud more. Oh well. I got a lot of pat-on-the-backs for even speaking so that was nice. I also am pretty sure I’ve made a few great friends as a result of going.

And also the wine.

We ended up winning a few things from the silent auction and Ron Dayne, former Wisconsin Badger and NFL football player totally initiated a hug as he was leaving.

It was really hard to come home and not feel cocky. But then this morning Arthur reminded me I had already been cocky enough by going in less than comfy clothes and shoes.

I stayed home from work for the second day in the last two weeks. I hate doing it because my paycheck just gets smaller but I just – I had no choice really. I was already dealing with a spasming back upon waking up and my knees and ankles were just killing me. Surprisingly my right knee is the most angry, but my left side is always the worst. Huh. All those things only get worse if I’m at work though. My hands are pretty poofy today too unfortunately. Blech.

Hopefully tomorrow is better. The more removed I am from the speech the better I feel, but if I speak again at an event I totally need to not freak out when I say ‘um’ or feel the need to go over my note cards really meticulously.

Oy.

A Letter to Arthur on World Arthritis Day

Dear Arthur,

There was one point in my life where I was fine to have you. For some reason, I thought that other kids didn’t have to deal with you, that our relationship was exclusive. I thought this despite my sister also knowing you very well because she doesn’t complain a lot and I hope that means she’s not as sick. Still, just for the pain I’ve watched her go through because of you… if you were a person, you’d be dead meat you bastard.

As I grew up though, I learned that you have hit 300,000 children in the United States. I also learned that specifically 10% of those are kids like I was, sick systemically. I now know toddlers who are dealing with you, practically babies. How dare you. They are so much more vulnerable to depression issues, disfigurement, even death. Again, if you were a person, I’d seriously fuck you up.

You’ve legitimately scared the shit out of me and my family on several occasions. Remember when you had me so sick they thought I had leukemia and was going to die within six weeks? Remember getting blood drawn every fucking day to try to figure out who you were? I remember too, trust me.

But I have also seen the miracles that drugs can do in the fight to end you. I have seen parents of little girls scared so badly that their daughters would lose their sight to you cry. But I have seen them beat you, to take back their eyesight just like I once had to do.

In the last year, I have watched you ruin relationships between people who really do love each other but can’t take you as a damn third wheel. I have watched you break up families and cause people to just stop talking about their pain because no one understands that it isn’t all in patient’s heads.

But I have also seen the dedication that my sweet fiance has to me in spite of you or because of you. I have been crying myself to sleep because of you and the havoc you reek on my body, only to be comforted by him. I’m stuck with you for the rest of my life, but I choose him.

The last year has been incredibly tough because of you. I failed a few medications and had nasty reactions to others. I had several infections, one of which is like the top killer of people in the hospital. I have had to stop graduate school – something that as a high school valedictorian type just infuriates me. I have been so depressed that I thought many times about ending my life. You have caused me so much pain I didn’t want to breathe anymore. For months, I had a hard time even walking the little bit one must. I had to give in and buy a cane. I had to admit that you, you fucking asshole, were really here and not ever going away. And seemingly like my rash you are just always there. UGH.

But I’ve also done amazing things. I performed two weddings as an officiant, one of them being my sweet sister’s. I walked one 5k and failed to finish another. I have restarted relationships that were tough for me because of you and I’ve cut unnecessary people out of my life. I have climbed around civil war battlefields and towers and hiked around on rocks. I have spoken up about pain you cause and pain you don’t cause to try to get it taken care of. I have become so much more of an advocate than I ever thought I would. I have seen one of my favorite bands play in person, and heard Hugh Laurie’s beautiful voice belt out old blues songs. I made friends because of you and your pain. And best of all, I said yes to marrying my best friend… and consequently spend the bulk of my computer time on pinterest looking at wedding ideas.

The point of this letter is to tell you that I hate your fucking guts, but that I also hate you so much that instead of wallowing in my hate I am going to go for the critical strike points. That’s right Arthur, it’s time for a blow to the balls.

And that is what World Arthritis Day is about – raising awareness and supporting research for a cure to end you. And we aren’t going to stop, we aren’t going to rest until you are over. Just remember that next time you try to fuck up my day.