I love vacation.
The point of this is that I forgot what my brilliant idea was.
Suffice to say, it was amazing, and everyone would be in awe of my genius, and I would become Blogger of the Year, and be invited on Oprah, and the world would revel in my glory.
Or, alternatively, I would start writing, and then get distracted, and go make a sandwich, and watch some TV, and three hours later, I would come back to my computer and wonder what the hell I was doing.
Does anyone else have blogging ADD like I do?
of course, that is 2 hours of my life i'll never get back...
I'm okay, just shook up. My legs wouldn't work when I had to get out of the car. They were shaking so bad I thought I was going to pass out.
This puts a serious damper on my vacation to see the family next week....although if I win the lottery tonight, I will be buying a new car, and plane tickets. Actually, maybe I'll hire a chauffeur. That might be better.
I'll have better pictures tomorrow. In the daylight.
:-( I hate today.
Not just a few spare tears that managed to sneak out, but full on sobbing, trying hard to muffle it as to not wake up my roommate at 4am. Gasping and fighting for air, eyes burning, nose running. Curled up in a tiny ball, as if that'll keep any more awful images from forcing their way into my subconscious.
I've had many dreams where I lose people I love. Plane crashes and heart attacks and car accidents and zombie takeovers....I've seen it all in the hours I'm sleeping. Everytime something hits a little too close to home, I find myself on edge the rest of the day.
But I don't think any dream has ever effected me this much...has ever forced me out of bed at 4 in the morning, terrified to fall back asleep because the images might come back.
What is the difference now? Was it the utter insanity of it? Usually, the loss comes by some random but plausible means that I know comes from a real fear - or by something so completely impossible that I don't allow myself time to consider it (because, seriously, I'm not actually concerned that my sister may find herself eaten by a velociraptor anytime soon)? Was it because this was something that had never even entered my realm of conscious thought that it has my heart still pounding, twenty minutes later?
Was it more? Was it the sense of hopelessness I had, as I watched someone's life slip away from them, literally between my fingers? Was it anger at anyone who would commit such an act? Was it fear - not that the circumstances of the dream were likely to happen, but that the revelations made were more based in reality?
I don't know. I don't know. All I do know is that it's 4:24am, and I will not be able to fall back asleep. And my long day ahead just got longer, now that I know I'll be jumping ten feet in the air with every sudden noise I hear.
Well, I'm fairly certain that even if I had an answer for that, I wouldn't divulge that information so easily on the interweb.
Have you ever liked
No, I don't really like anyone. Ever.
Somewhere with alcohol. I won't lie, I'm easier to know when I have a drink in me.
You have to get a facia
Been down that route, I'll pass.
Are you mad about
Not at the moment, but the wine helped.
Are you plann
Yes! I start up again January 5!
Do you smoke
I do not. Nor have I ever. That just doesn't appeal to me.
Am I getting paid to do so? Even then, probably not. I curse like a sailor. I blame my mother's side of the family :-)
Are you curre
Have you ever ridde
Yes, but not in years.
Are you scare
In theory, no. However, I'm sure if a shark and I entered into a battle of wits, I would simultaneously defecate and pass out.
You get arres
Something ridiculous. So far-fetched that there probably isn't even a law prohibiting it, because what person in their right mind would do something so idiotic?
What are you weari
When did you cry last?
About 17 minutes ago, watching Grey's Anatomy. I'm a sap. And you better love it. Because it comes with the package.
Work. Beyond that, who can know?
Do you like seafo
Do you remem
Quite often, which isn't generally good, as I have extremely vivid and realistic dreams a lot.
I say Shotg
Already called it, bee-yotch.
Who was the last perso
Don't glue your ear to the table.
There are many people I would like to see SOON, but right now, I would like to see the inside of my eyelids.
Are you afrai
We'll find out if it happens....
Do you consi
Not yet, but come January I intend to be.
Name some thing
Worked. Chatted. Slept.
If you are being
I'm either sad about something, or EXTREMELY pissed off, and I know myself well enough to know that I shouldn't speak at those times.
What is the weath
There was weather? I didn't realize, as I was at work for ten and a half hours.
Pillows, sheets, comforter. The best blanket in all the land, aka, the blanket my momma made for me.
In my bed, alone. As most other nights.
Are you afrai
Not at all. Luckily, I did not inherit my mother's fear of heights.
Can you play guita
No. I have tried, but I really have a mind-body disconnect and I definitely lack the coordination.
What is the last thing
Turned off the light
What are you doing
This, and then going to bed.
How late did you stay up last night
Close to midnight, and probably because I was trying to prove to myself that it is possible for me to stay up past 7pm
Do you belie
Yes. It's not always easy, but it can be accomplished.
Ever been swimm
Yes, I prefer that over a pool. Not over the ocean, though.
Is it cute when a boy/girl calls
No, it's annoying.
Is this year the best year of your life?
Do you have any stran
Is it easie
What woke you up today
My alarm clock.
What kind of shirt
Are you excit
Of course. My future's so bright, I gotta wear shades.
When was the last time you yelle
Probably sometime when my sister and I still saw each other on a regular basis, and likely when we shared a roof. I'm not a big yeller.
Who hasn't had that happen?
Have you done anyth
No, I learn from all my stupid mistakes.
Is there any emoti
Nope, I embrace the lethargy.
My initial appointment was spent answering A LOT of questions about when I had the most pain, what different conditions, when I felt most tired, where the pain was worst, and on and on. I also got a lot of blood work done, and had x-rays taken of my chest, wrists, fingers, and knees. By the end of the appointment, my doctor thought that I showed symptoms of RA, and started me on 200mg daily of Celebrex, a non-steroidal anti-inflammatory drug (NSAID). I scheduled a follow-up for a month later, a few days after my 23rd birthday.
In the three years since then, I have been to the doctor more times than I care to count. I have had more blood drawn than seems humanly possible, and spent far too much money on medication and Icy-Hot. Not quite what I imagined my life would be like at 26.
I have been lucky.
My RA doesn’t seem to be progressing all that rapidly. I have been able to stay with Celebrex, and last year added Plaquenil to my daily oral dosings. Plaquenil is a disease-modifying antirheumatic drug (DMARD) that has been shown to prevent swelling and pain in arthritis sufferers, although, from my research, it’s not known quite how it works. With these two drugs, I have been extremely happy to discover I don’t have any major side effects.
However, in the last year, I was forced to switch from Celebrex to Aleve when my insurance no longer covered Celebrex. Painwise, the Aleve was successful. Unfortunately, taking it at the dosage I required caused me to have stomach pain, and after an endoscopy in August, I discovered that I have pre-ulcers. Now I am on a Tylenol regimen that isn’t nearly as effective, until my preauthorization to get Celebrex covered again comes through.
Occasionally I will go on a course of Prednisone, a steroid that reduces inflammation. This drug affects me in many ways, and I prefer to stay away from it. I become a different person when I am using it, prone to sudden mood swings, going from lethargic and mellow to bouncing off the walls. It also can cause weight gain, and sure enough, every time I use prednisone, I suddenly seem to have an extra 5-10 pounds or more that appears as if by magic, no matter what I do to prevent that. That in itself is an oxymoron, as I know that if I lose weight, my RA symptoms will ease, but every time I get into that groove, I end up on steroids again and balloon back up.
Even though my RA isn’t always that bad, there are times I have flare ups that make the simplest task seem impossible. There have been days where I’ve had to literally roll myself out of bed, and crawl to the shower, because I know hot water is the only thing that will help with my morning stiffness. Those mornings I thank God and my roommate that I got the room with the attached bathroom. Sometimes when my wrists and fingers are acting up, I find myself fighting tears at work because not only can I not type, and do my job, I can’t even focus enough to try. I’ve had many restless nights, unable to sleep because of pain in my hips, or knees, or shoulders, or ankles. And there have been too many times where I wanted to do something, but after having to drag myself around all day, I’m simply too exhausted to do more than collapse on the couch and stare into space.
Cold weather is difficult as well – it makes the swelling of my fingers worse, and they actually turn purple. This is something called Raynaud's, and it is common in patients with RA. It’s not unusual to see me wearing gloves a lot once the weather turns cooler, in an attempt to keep my joints warm enough to function. Flying is especially bad – something about the cabin pressure and the cooler temperature – and I’ve been known to don gloves on flights in the middle of summer.
Living with RA is difficult, and not necessarily because of the symptoms of the disease. Rheumatoid arthritis is not an illness with visibility. You can’t see someone suffering from RA and know what they’re living with. People who don’t know my situation probably think I’m lazy on my bad days, when I take the elevator up one floor at work, or when I mention that I’m going right home from work and sleeping. It’s not an image I want coworkers to have of me, but the sad truth is, RA has affected my life more than I thought possible when I was diagnosed.
There is no rheumatoid arthritis in my family that I know of. RA isn’t necessarily a genetic disease, although it can be passed down. Doctors don’t know why some people get RA and some don’t. RA doesn’t only hit senior citizens. There is no age restriction for arthritis. However, from what I’ve found in research, my age at diagnosis was slightly more unusual, as most people develop RA between the ages of 25 and 50. Women are affected by RA three times more often than men.
Being a 26 year old woman with rheumatoid arthritis is an experience, and since diagnosis, a new set of fears. I face day to day challenges on some of the most routine tasks that I’ve been doing for years. Tying my shoes, walking up stairs, brushing my hair...all things I’ve done without issue since I was a child, but now have problems with. And new fears? I’m scared that the things that I’ve always counted on in my life will never happen. I’m afraid that by the time I’m ready to have children, my disease will have progressed to the point where I won’t be able to, or I won’t have the energy to play with them if I am able to have them. I’m scared that I will lose my independence at a much younger age that I ever could have guessed, and my freedom is something I value more than most things.
I do try to be more active to help keep me mobile and energized. I bounce back and forth on Weight Watchers – again, it’s hard to stay motivated when a part of me knows that the next time I’m back on certain medications, I’ll just fail again. But I press on – trying to change my lifestyle to keep myself from requiring hip replacement surgery in my thirties.
I have to say that not everything has been bad since being diagnosed. I’ve really learned how many people care about me in the last few years. My family has pulled around me, and my friends have been a huge support. I’ve surrounded myself with amazing people, and it’s paying off. There are days when I don’t want to go to work, don’t want to leave my apartment, don’t even want to get out of bed, but I know I have people I can reach for, or call, and they’ll put some motivation back into me.
I’ve also learned how strong I am. How I can work through pain and fear and confusion and get things done. How I can inspire others, and inspire myself.
I have been lucky. On so many levels.
However, I know luck changes. But I also know that if and when it does, I have the strength of my family, and my friends to get me through it. More than that, I know that I have the strength within myself to push through whatever this life throws at me.
This December I will be participating in the Arthritis Foundation's Annual Jingle Bell 5K. December 7th marks my 4th year walking, and I am eager to once again face the challenge - 3.2 miles that start with a fairly intimidating hill, usually tromping through ice and snow. I've done it 3 times before, and I can do it again.
I'm asking for support doing this - my hope is that even if there is no cure found in time to help me, maybe research will develop new treatments with less side effects, or even a cure by the time my future children may have to deal with this.
If you have the ability, please sponsor me in the Jingle Bell Walk. I truly appreciate every donation, no matter the size. If you can't donate, please keep me in your thoughts on December 7th!
Thank you all for the support and encouragement!
To donate: My Fundraising Page
November 2005 Article about me in Oakland Press
During our lunch hour, we went downstairs, to the zombie-tailored food court. There we found such establishments as ‘Brain Bonanza’, ‘International House of Innards’, and a vegan zombie joint, which I unfortunately can’t remember the name of.
It wasn’t scary....it was just...normal. As if we had always been zombies. As if cannibalism was the thing. As if my giant hamburger of ground up intestine was standard fare on a Monday afternoon.
I have had some weird dreams in my life, and this one was right up there. I am hoping that these vivid dreams stop soon – because I am definitely not getting any good sleep.
I think the worst thing about this dream was how mundane it seemed...til I woke up, and grossed myself out over my subconscious self eating ground up human.....ick.
The Song Which:
Reminds you of an ex-lover:
"Yellow" by Coldplay....maybe because it was the most overplayed song in the world when it first came out, but when I was with him, we always seemed to hear that song, or see the video. Just the first few notes of that song, and it all comes back....that was the first (probably only) guy I've ever come close to really falling for, and it doesn't help that we're still close and still talk often. People always say a first love never really leaves you, and I suppose that's the case here, even though it was never really love. At least not that kind of love...
Reminds you of an ex-friend:
"To Be With You" by Mr. Big. It's not so much an ex-friend as a friend that was taken long before his time. Someone who still crosses my mind to this day, even though he was killed over six and a half years ago. He was the one who renewed my love of 80s music. I could use almost any 80s song for this, really, but that was has a different kind of significance, as we always seemed to be a week off track with each other, although I know we both wanted the other at some point or another. I'm sure that for the rest of my life, anytime I hear the Scorpions or Great White, he'll be fresh on my mind.
Makes you cry:
"Hear You Me" by Jimmy Eat World. That song reminds me of everyone I've ever loved and lost. Actually, one of the lines from it will be one of my next tattoos ("so lucky so strong so proud" in case you're interested)
The only time I've heard that song and not cried was when I went to their concert this past July. And that was probably because I was actively trying not to.
Makes you laugh:
"If I Had a Million Dollars" by Barenaked Ladies. That song will forever remind me of youth group and long car rides and overnight retreats and singing along as loud as possible with my best friends. Guaranteed way to cheer me up is to either play that or start singing random lines from it.
You never want to hear again:
"100 Years" by Five for Fighting. A song so awful that I actually had a nightmare about it. If you don't remember it from the ten minutes when it was everywhere, here are the lyrics: This song makes me want to stab my ears out
Sums up your teenage years:
"Runaway Train" by Soul Asylum. Still one of my favorite songs, definitely was then.
You want to get married to:
First dance? Or walk down the aisle to? I'll choose one that would work for either, and I would use for at least one of those - the acoustic version I have of "Everlong" by the Foo Fighters. It's an absolutely beautiful rendition. It would definitely be a little less traditional than the standards, because I imagine if I ever get married, it'll be fairly unconventional.
Songs that make you want to "get it on":
"Come a Little Closer" by Dierks Bentley. His voice is just....yum. Anyways. "Green Eyes" by Coldplay...one of my absolute favorite songs. Maroon 5 "Secret." "Crush" by Dave Matthews. Although, obviously, I don't know about any of this from experience. Hi Mom.
You like to wake up to:
I wake up every morning to "Say It Ain't So" by Weezer, as it's my ringtone and therefore my alarm. That works for me.
You like out of your parents' collection:
Anything from the Beatles.
Wouldn't know about if it weren't for a friend:
"Sunday" by Bloc Party. One of my newest favorite lyrics is from here - "When I'm with you, I am calm, I'm a pearl in your oyster...Head on my chest, a silent smile, a private kind of happiness. You see giant proclamations are all very well, but our love is louder than words." Sigh. Why don't men that write lyrics like that exist in my world? The lovely accent doesn't hurt either.
You want at your funeral:
"Let it Be." The Beatles.
2. For each question, press the next button to get your answer.
3.YOU MUST WRITE THAT SONG NAME DOWN NO MATTER WHAT
IF SOMEONE SAYS "IS THIS OKAY" YOU SAY?
(great song. <3 jimmy. lyrics sorta make sense for this)
WHAT DO YOU LIKE IN A GUY/GIRL ?
Any Way You Want It
(so I want to be spoiled? or I just want Steve Perry? (80’s style...not so much now))
HOW DO YOU FEEL TODAY?
(ok, this is maybe exactly what I needed.)
WHAT IS YOUR LIFE'S PURPOSE?
WHATS YOUR MOTTO?
WHAT DO YOUR FRIENDS THINK OF YOU?
(hope not, cause if I’m the luckiest, everyone else must be screwed....)
WHAT DO YOU THINK ABOUT VERY OFTEN?
(well, I like to be outside..)
WHAT DO YOU THINK OF YOUR BESTESTS?
Look After You
(I don’t know if that’s in a good, got-your-back way, or in a creepers stalker way...)
WHAT DO YOU THINK OF THE PERSON YOU LIKE?
(HA! I just almost spit out coffee. This is waaaaay too appropriate)
WHAT IS YOUR LIFE STORY?
(heh, yea, kinda, I guess)
WHAT DO YOU WANT TO BE WHEN YOU GROW UP?
Satan is My Master
(oh, ben folds. you and your crazy songs)
WHAT DO YOU THINK WHEN YOU SEE THE PERSON YOU LIKE?
(that makes me a little blue)
WHAT DO YOUR PARENTS THINK OF YOU?
(well, yea, I suppose that’s true, since they live 600 miles away....)
WHAT WILL YOU DANCE TO AT YOUR WEDDING?
Don’t Waste Your Heart On Me
(heh, that’s a divorce waiting to happen, methinks)
(heh. that seems a little inappropriate)
WHAT IS YOUR HOBBY/INTEREST?
(HA! Again, almost spit out coffee)
WHAT IS YOUR BIGGEST FEAR?
Love Ain’t Worth Making
WHAT IS YOUR BIGGEST SECRET?
Wreck of the Day
WHAT DO YOU THINK OF YOUR FRIENDS?
Lay Me Down
(that’s probably inappropriate...)
WHAT DO YOU SEE YOURSELF DOING IN 10 YEARS?
(does that mean I’ll be having a baby? or just a beat down car?)
WHAT DOES NEXT YEAR HAVE IN STORE FOR ME?
(not so encouraging)
WHAT DOES YOUR LOVE LIFE LOOK LIKE?
When the Heartache Ends
(true but sad.....)
WHAT DO I SAY WHEN LIFE GETS HARD?
Let It Be
(weird how that came up....it’s the true. on bad days I listen to that on repeat for hours. especially at work)
WHAT DO YOU WANT AS A CAREER?
YOUR FAVORITE SAYING?
Never Leave Your Heart Alone
(I’ll run with that)
WHAT DO YOU THINK OF YOUR PARENTS?
You Could Be Happy
(I hope they are!)
WHERE WOULD YOU GO ON A FIRST DATE?
(well, that could be interesting...)
(haha. yea, I think I’ve proven that with my wide assortment of injuries...)
WHAT IS THE THING I LIKE DOING MOST?
Gotta Go My Own Way
(don’t laugh...it’s from High School Musical. 2.)
THE SONG THAT BEST DESCRIBES THE PRESIDENT?
Sorry About That
HOW WILL I DIE?
(god, I hope not. I prefer a painless death...)
REMINDS YOU OF AN EX-LOVER...
Kiss the Rain
(um. yes. definitely)
REMINDS YOU OF AN EX-FRIEND...
MAKES YOU CRY...
(yea, Damien Rice does that to me)
MAKES YOU LAUGH...
Just Watch the Fireworks
(no, not really)
YOU WANT TO GET MARRIED TO..
(HA!! Coffee on the monitor again....)
YOU WILL WAKE UP TO...
(eh, nothing funny there)
WHAT SONG WILL BE THE SUBJECT WHEN YOU REPOST IT?
(not NIN version, thank you)
What Your Cute Monster Says About You
You are a vibrant, vivacious person. When you live, you live as wildly and loudly as possible.
You are very bold. You are willing to stand up and be a leader.
Your inner demon is intensity. You have a tendency to let your passions take over.
People think you're cute because you're fiery. When you get worked up, it's charming.
Yea...more or less.