Not Standing Still's Disease

Another Chapter in MTX Land

2012-02-01T21:17:00.003-06:00

I had a doctor's appointment today. Well, a nurse practitioner.

She was awesome.

I did labs, including peeing ~~all over my hand~~ in a cup, and an x ray of my lower back. I'm holding my MTX dose this week to see if the back pain and hand pain subsides. If there is something wrong with MTX and me, then I'll move onto leflunomide. From what she says, it's essentially MTX but less crazy.

That's pretty good, because at this point I'm about ready to not work ever again with the pain I've been in the past few days. Yesterday was easily one of the worst days of my life. And I still worked. Because I called in the day before.

I already arranged to have Thursday and Friday off this week as well. Last night, I felt a break in the pain, and then things got a lot better, but I just want to take it easy here for a few days. I'm exhausted after working through that pain.

I'm just hoping for some answers on what's going on here. It's imperative that I get them, so that I know how to proceed at this point.

In other news, my celiac tests came back negative, so that's good. And I've discovered Spotify, so my love of jazz is growing exponentially.

Mmm blues and jazz.

Makin' Babies

2012-01-27T21:57:00.002-06:00

Warning: this is maybe going to come off as a rant. I had an encounter with someone (who I perceive to have a horribly negative view of herself and the rest of the autoimmune community) about having children.

Needless to say, I left the support group this person was posting in.

This person posted a question (if by question, you mean opinion phrased as a question) about how she didn't understand how anyone with this disease and on these medications could even consider getting pregnant. She went on to say that we have no real evidence on how these medications affect fetuses...

And on top of all that, since RA is maybe genetic, how could we consider passing along those genes?

No, I'm not kidding.

Yes, I almost punched a panda in the face.

My panda is sad.

So, after reliving the bits of my childhood spent debating on whether or not I should have children, I casually commented that people stop their medications (DUH) when they're looking to become pregnant, that they work with their doctors, and that the parents I know who deal with medical issues work together as a team - just like any 'normal' couple does - to raise their children.

I also mentioned that the post had offended me and that it really hurt me to think about people coming to that page for advice and help on a bad day to see a post essentially talking about us being horrible parents and worthless. At least, that's how I felt after I read it. And from the wonderful parents I know with RA and other related diseases, that's just horse crap.

Apparently, that was a very bad idea to share my thoughts.

A few comments later, I left the group. But not until I mentioned how I was glad that the children I know with these kinds of diseases aren't a part of this group, and how glad I was that these children weren't a part of the group and hopefully wouldn't be able to see what had been said. After all, if it made me feel horrible about myself, what would they think?

Her response? Maybe they would learn something from reading it.

What?!

Children. Wait, no. ESPECIALLY children who deal with an illness full of so much pain and so much suffering should NOT EVER have to consider the the fact that they "should not" procreate because of how horrible their disease is, how incompetent they will be as parents, how their genes have given them no choice but to choose to not have children themselves.

I wish I was able to express how crazy pissed off I am right now. But I just can't. I just can't.

Related note: my chest and neck get red when I get mad. Cooooool.

If I have children, it will be because I feel like I can handle children. Yep, that means my RA too, but that is not the only deciding factor. I have good days and I have bad days. But I would expect my partner and I to make this decision together, and to go into it exactly like that - together.

Life is not about feeling like shit because your body does things you can't control. It's not about you being unable to do things. If there's anything I've learned from the past 18 years, it's that life is about finding ways to be happy. And if having a child makes you happy - if the thought of holding someone half you and half your partner - if that does it for you, then you have that baby. You're going to go through the sacrifices of losing medications for a while and dealing with the physical repercussions afterwards.

You and your family goes through this, not random judgmental pity-party lady. And if that sacrifice doesn't deter you from having children, you're going to be one of the best damn parents ever.

And if anyone ever tells you different, you tell them to fuck off and talk to me, maybe not in that order.

Ol' Blue Eyes

2012-01-27T12:39:00.001-06:00

I just got back from the ophthalmologist and I have awesome eyes.

No, seriously.

There is a little bit of pigment on the lenses in each eye, suggesting past inflammation (duh). But other than that, my eyes are awesome.

YAY!

Other than that, I'm plugging away on my MTX and such. I don't feel good today, mostly I'm sore from - brace yourself - RUNNING the other night. But it's running sore not RA sore.

Thank you universe.

I'm also grumpy today, kind of, but getting rid of it by watching Tabatha Taking Over. Oooh I love that woman.

Cheers!

Gettin' Jiggy With it

2012-01-17T21:41:00.000-06:00

Warning: This post is about sex. Well, sex and intimacy and RA and love. But mostly sex. That being said, links will most likely include at least text about sex, if not pictures or (gasp!) naked people. But no naked me. Sorry you guys. Read on at your own risk!

Not many people are willing to talk about sex with a chronic illness. It already feels like we are sharing so much of ourselves, allowing people to look in on our pain. I can imagine that others felt like I did until recently - that sex is an intimate thing not to be shared with the outside world. While I tend to agree still, I think that someone has got to start talking about sex and RA. People need to understand just how much this disease can take away from us. It's not just about dignity or being able to go to the store or the bathroom alone - it's about a disease affecting everything you do and trying to steal your intimacy and who you are.

I'm not going to let it.

Yes, I ran this post by my boyfriend. He doesn't agree with the flattering bits, but oh well :)

I won't put anything too personal about him up. I don't need all y'all trying to steal him from me!

I dated throughout high school and college. I had one or two semi-serious relationships that ended, coincidentally, when my disease was flaring up. It wasn't until I met my current boyfriend, though, that I really had intimacy in a relationship.

Unfortunately, not too terribly long after we met, my RA began to get worse. Over the past four years, I have gone from (relatively now!) little pain to so, so much pain I can't get out of bed hardly on more days than before. And I often need help with things - whether I ask for it is another story. It's done a number on my self-esteem and my confidence. I get worried about how other people see me, sometimes to the point of obsession. I change outfits at least twice when I'm trying to get ready to go anywhere, unless it's a quick run to the grocery store. I get worried about my weight, my rash, my psoriasis, and joint swelling. I don't want others to see, because then they stare all the way through the store.

All of this naturally should mean that I have less sex, that I want to be touched less, and that I hate my body for the things it does to me.

But I don't. If anything, I want to be touched more.

Why? There are a few reasons.

Sex is an amazing pain reliever.

No, seriously. Google it.

When you orgasm, your body releases endorphins (also happens during exercise, eating chocolate, and laughing!). These lovely little polypeptides have a similar chemical makeup to morphine. Once released, they make their way up to the brain, where they bond to neuro-receptors, give pleasure, and relieve pain. During sex, your body's production of endorphins can increase up to 200%. That's a lot of steamy sexy morphine.

And if you're in love - real love, not puppy love - the feeling is that much more amazing and intense.

So next time someone gives a headache excuse, tell them they're full of it ;)

One of the tough things about having an autoimmune disease is that there are often other conditions that go along with it. One that specifically loves to ruin sex lives is Sjogren's Syndrome. This fun little condition dries out your body - your eyes, your mouth, your skin and, yes, lady bits too. Unfortunately, there aren't a ton of options on how to deal with the latter, other than extended foreplay and lubricants.

It can get really frustrating to deal with. Nothing can ruin the mood more than trying and trying and your body just isn't cooperating. That can make both of you feel like you're inadequate.

But you're not. Your body is just stupid sometimes. If you have RA, this is something you (probably) already know. Your partner needs to know that it's not because you don't find them attractive or that you don't want to be with them. This is where a wonderful amount of communication makes life tons easier.

Also, a really good vibrator helps.

(If you're dealing with Sjogren's, check out the SS Foundation website for tips on how to deal with dryness)

Speaking of vibrators...

Some of the people I know dealing with chronic illnesses don't have a significant other, for one reason or another. Some feel like they are not 'good enough' to be with another person because of their illness, and some are just in-between mates. But there's nothing saying that you cannot enjoy sexy times alone.

Masturbation has a wide array of health benefits for both men and women, from preventing infections to lowering chances for type 2 diabetes to improving prostate and immune health to reducing stress and even more.

With all these health benefits, why aren't we pleasing ourselves more often? Or, at least, why don't we talk about it?

Okay, so as someone who has been recently dealing with hand pain, I can sympathize with the fact that this seems like a difficult task. But there are plenty of ways to get busy without putting as much stress on your hands.

Vibrators are often said as being a girl's best friend.

Oh, those are diamonds? Oops.

Anyways, this can be still be true with RA, if you find the right type for you. If you're hands are bad, you might want to consider a vibrator like the butterfly, that straps around your legs. Some of them even have detachable controls to share with others! But they're also expensive. Lame.

Just whatever you do, make sure you have a designated battery changer. There's nothing worse than wanting to get busy and not being able to unscrew your vibrator alone, or feeling like you need to get the grippy from the kitchen to have an orgasm.

And then realizing you need to clean the grippy more.

I also know people who have a collection of vibrators and toys, some that are easier to use on bad days, and some that are so good you won't care how you feel.

On a slightly less mechanical note, there are worse ways to warm up stiff hands than to play around with yourself or with another.

And that can be a fun way to start some foreplay action.

Speaking of foreplay, I hate my body...? Okay, bad segue. And also, not true.

I may not be happy with my body. It might hate me, but I don't hate it. I just don't really approve of the things it does to me. Since going on prednisone 10/2010, I have gained a whopping 40 pounds total.

Yeah. I'm pissed. I feel like a beached whale.

At first I worked out and tried to keep it off, but then I started hurting too much and got lazy. I'm tired of the poofy face, of having a muffin top, and of not wanting to wear my bikini... which, by the way, I rock normally at around 200 pounds because I usually don't care what other people think of me, when they're not around anyway. Well that, and a lot of that weight is in the right places. Yay curves.

I might hate that my body fights me every step I take, literally. My knees, left more than right, make me remember the running I did in high school to lose weight and every bump, bruise, and fall they've endured. My shoulders hurt so bad sometimes, I can't work because I push buttons on a computer screen for eight hours a day. And I'm not even going to get started on my ankles or my hands. Frozen digits don't make for fun talk.

But I also know that I am beautiful and I'm sexy, in spite of - or even because - my disease. I am a fighter. I work hard to be active-ish, and I play equally as hard. My boyfriend does his best to remind me of that when I forget it.

Yep, he's is pretty amazing.

If you follow me, you know that the past few months have been pretty difficult for me. I made the decision to change jobs and stop going to school because of how bad my disease has been getting. And all with basically ibuprofen as a pain medication.

No, it doesn't work.

Recently, my arms have begun to experience more pain and stiffness. I try to wear clothes that are easy to take off but sometimes you don't know when that's going to hit. In the past two weeks, I've had to ask for a little help taking off my clothes. I'm sure he totally doesn't mind helping :) But seriously, I've never gotten a scoff, an eye roll, or the like.

It gets better.

More than a handful of times now, I have been in bed crying and trying to invite Chewbacca to come rip my arms or legs out of their sockets (apparently the force is not strong with me). These are not moments that I'm happy to share. No one should feel like that, and I HATE being so vulnerable. Then I think about that, and that gets me going.

But then imagine someone climbing into bed with you, holding you, and telling you that everything will be alright. And when you feel like nothing in the world is going your way and that you'd rather be anyone else but you, to have someone kiss you, love you, and make you feel like the luckiest person in the world is the most amazing feeling. I can't even put it into words.

I don't know how he does it, but he always makes me feel better. He might not make all my pain go away (though he has several times), but he makes me laugh and helps distract me from my brain trying to focus on the pain and all the things I can't do. He also is my biggest supporter and my biggest help.

He makes me gluten free food, and tries to not eat too much gluten full foods around me. He loves doing this for me, because he enjoys making me happy by making things like hamburger buns so I can finally eat a real burger again.

He's going to school right now, along with working a full-time job, so that he can make a ton of money when he's done. He wishes I didn't have to work so much, and he wants to do what he can to take care of me. He wants this - educating people about the pain I go through, which I love doing - to be my job.

I don't know anyone in the entire world as amazing and as wonderful as that man. And he's so humble about it, too: "You're a people. You're supposed to do nice things for people."

Too awesome, right? But he's like legit. His momma raised him right.

Some days, I worry I'm going to wake up to find the last four and a half years has been some crazy pipe dream.

I'm glad I haven't woken up yet.

I asked some of my friends if they had any questions as I was putting together this post. A few of them did, and I incorporated most of them into the post but I'd like to share this one here.

Q: How does one make love when everything hurts and all the wrong things are stiff?

A: It does seem like a horrible idea to think about, right? But it doesn't necessarily have to mean the normal crazy physical sex that you might think of at first. To be perfectly honest, I love things that switch up angles, but some of the positions are really hard for me to get into sometimes, especially with my knees being my worst joints. We have come up with some different positions that work angles the same way for the both of us, but allow me to lay down instead. A lot of the sexual activity I'm involved in has me on my back. Sometimes, I feel as though I don't participate enough. But I also enjoy just being able to share that time with my boyfriend, and so does he. I would love to do more, and hopefully soon I will be able to.

Sometimes it does take a bit of foreplay before my body feels up to moving in certain ways. Essentially, I need to release enough endorphins to counteract the pain I'm already in so that I can enjoy my time with the boyfriend.

That just kind of pisses me off more than the rest of it, but c'est la vie I guess.

Don't let your chronic condition take away your lust for life, for your happiness, or for your partner!

Further research:

Sex and Arthritis, The American College of Rheumatology

Go Ask Alice

Dr Doc Online

Sex With Arthritis, Everyday Health

Intimacy, Sex, and Secrets of Lovemaking, WebMD

Arthritis and Sex, The Dinah Project

Arthritis and Sex Positions, Coastal Health Info Service

Sex Positions Guide, Sex Info 101
This website is helpful because it categorizes sex positions, but also includes a 3D model of what the actual movement during sex would be like. It can be a super useful tool to seeing if you think a certain position will make your hip feel worse, aggravate an injury, etc. But it also has tips on massage, masturbation, and sexual health. Just try to stay away from the weird comments, eh?

Best Weekend Ever

2012-01-10T08:25:00.000-06:00

Back in May, I was ordained as an officiant. I officiated my sister's wedding in October, and this past weekend I also officiated the wedding of two of my close friends.

I had a blast the whole weekend. Friday, the boyfriend and I headed out to the hotel where the wedding was going to take place. Then I headed over for the dinner & rehearsal. I honestly feel like it wasn't really work at all, none of it.

Well, maybe standing in front of 200 people in heels performing a wedding. Holy cow.

After the ceremony, my feet were killing me so I booked it upstairs and was lazy for a while. We came back down for the reception a little later, and I ended up popping in and out most of the night. I even was about to take a nap at one point before going down and dancing my butt off.

I was tired right after dancing - so tired that my knees and hips were sore. But that's nothing a little soak in the whirlpool tub can't fix.

And like that, the next morning I felt amazing. I wasn't sore from dancing at all. Or from wearing heels for like half an hour. It was wonderful.

And then Sunday night I did my Humira shot.

Oops.

So then yesterday was a disaster at work. I was so tired, so sore, and last night my left pinky finger kept trying to curl in. By the end of the night, I could barely move my arms.

So far today, I feel so much better. I think it's because I fell asleep rubbing the boyfriend's back and being snugly. He makes everything better.

Pain Scales

2012-01-09T08:38:00.000-06:00

Hey you guys! My last post was actually written for a blog carnival run by Kelly over at Rheumatoid Arthritis Warrior. Go check it out!

http://rawarrior.com/crossing-the-language-barrier-of-pain-scales-rheum-blog-carnival/

The Medieval Pain Scales

2012-01-05T22:44:00.001-06:00

The art of medicine has evolved immensely in the past few decades in general. We have new treatments that give people with a number of diseases, like cancer and HIV/AIDS a chance at a life longer than a few months.

And yet, there is so much still to be redone and changed for the better... like the pain scale. Or, more specifically, the pain scale for chronic pain patients.

You may be wondering to yourself why this even matters.

Because my pain doesn't always fall into this damn scale. My 'little bit' is considerably different than that of a 'normal' person. And my no hurt has visited me a total of maybe 5 times in my life when not getting jiggy with it (yep, too much information, but I don't care!).

Do you really know even know what the scale above means? I sure as hell don't.

Do doctors really even pay attention to this scale? And to our answers to it? What if I'm perpetually at a 3-4?

In doing some research, I found that those of us talking about pain scales right now are not alone in wanting this to be revamped. Back in 2002, a guy named Jack Harich with the International Pudendal Neuropathy Association developed his own pain chart. And I kind of like it. It seems to be more in tune with how I see my pain than any other I've found so far.

First, you try to determine if your pain is mild, moderate, or 'holy shit I am going to die'/severe. Thankfully, Jack included descriptions so you don't have to guess! I don't know that I exactly agree with all the descriptions. I think you can be 'disabled' in the moderate range, but you have to be constantly hitting those high numbers. And I think you can live independently while being disabled. I've seen it in my family, and in my RA family.

He included descriptions of each pain level, which I agree with for the most part. I don't know about the dental descriptions on some. But that's because I had horrible wisdom teeth coming in and going back up for years.

I generally sit at a 5-7, jumping up to 8-9 probably a few times a week. Fun tidbit: today, I actually left work early because I was at an 8. I was 7-8 pretty much all day yesterday and ended up staying in bed most of the day.

To be honest, I don't know that I've ever been at a 10. Maybe once or twice, but not that I can clearly remember.

Is this type of pain scale going to make it more difficult for patients to describe their pain with a number?

I don't think so. I think that, along with the paperwork you're sent for a first visit, you should be sent a copy of this pain chart. You should be keeping a general record of your pain for a month or longer before your appointment, according to the chart. Then, when you are asked what you current pain level is, you should be keeping this chart in mind.

Can you imagine how much easier it would be with a chart that is actually explained and uniform? And without those damn faces mocking your pain?

Even without this scale being implemented and explained to others, I'm going to use it to refer to in my own personal health. I may even print it out and bring it to my rheumatologist in order to better explain how I'm feeling. Because otherwise, you and I both know, those numbers don't really mean a damn thing.

I Made This!

2012-01-04T11:56:00.001-06:00

Well, kind of?

I just wrote a blog post for the Arthritis National Research Foundation about my struggle with Still's Disease. You can check it out on their website at http://curearthritisblog.com/arthritis-showcase-kirstens-juvenile-arthritis/.

Thanks to their marketing director, Derek B, for approaching me with this opportunity. I really enjoyed working with them, and I hope that we can do some great things for arthritis awareness in this new year.

Wait, what?

2011-12-26T22:42:00.003-06:00

I'm having odd muscle issues. It's happened a few times before, but always in my sleep so I didn't really think anything more of it than an odd muscle cramp or migrating charlie horse. But apparently, when I actually got to look at it, I realized how fucking creepy it was.

Sorry, there's not another way to put it.

So Christmas, right? I worked a lot. I woke up and my right leg was super tense. My right heel hurt like a bitch - it hurt to walk, hurt to put pressure on, but I fought through it.

Later in the evening, the leg muscle tension has moved into my right foot. We are watching X-Files and waiting on nummy pizza when all of the sudden, the three middle toes on my right foot froze. Maybe even my pink too but it's so small I wasn't really paying attention to it.

They didn't just freeze like in place either. They fucking curled down towards my foot. It was like all the muscles in my whole leg down into my toes froze up. It was like that for, oh, a minute at the absolute most but probably 30-45 seconds realistically.

It was the scariest fucking thing I've seen in a while.

The muscles are tense today, but not as bad. I don't know how or why this happened. I googled it, obviously, to find that it could be lack of potassium, magnesium, from my RA, or from Parkinson's or MS.

My great grandma essentially died from complications caused by her MS. I watched her, as a very tiny girl, lose her mobility. I have very few memories of her before her Amigo go-cart. Things just got worse and worse for her. She eventually had a stroke, and ended up in a nursing home with a broken voice box because of the dip shit doctors.

And I have always been afraid that is going to happen to me too.

Yay for borrowing trouble and googling stupid shit my body does.

PS if you've had this, want to share what's up? Please?

I think I'm in love...

2011-12-20T09:40:00.001-06:00

With my new rheumy. And her nurses. And the whole office.

I got to the office, and they had like 80 handicapped parking spots near the entrance. Awesome. But I found a "normal" spot. They have a self-check-in kiosk - score. I avoided the long line. Not that it super mattered because I got in about half an hour early.

The waiting area was nice. It was large, and there were a ton of chairs. Rheumatology shares its waiting area with vascular surgery and cardiology. An interesting mix, but there was a good separation in waiting areas.

The nurse that took me back was very nice. He was a veteran, probably mid-30s, with an awesome sense of humor. I found out he's a float nurse from GP hanging out in rheumatology sometimes, but I love him. We talked about Arabic, knee problems (he SO wins that one, even before his three deployments), and he really made me feel comfortable. He also super liked joking around with me. It was awesome, almost like having my uncle there.

My doctor herself was so nice. She asked me why I was switching, and I told her that my former doctor's attitude just wasn't working for me, that I wanted to be more involved with my heath and walked through these things - not just for me but for the health blogging community.

She talked to me - really talked to me. She got to know me, and listened to me gripe about my health and my life in general. She did a full examination, listening to me about the joints that are sore. We came up with an action plan together, and that's exactly what I wanted.

So, I'm going back on MTX - but the injectable. She also gave me a stronger NSAID, but one that is known for not being harsh on the stomach. I have a referral to PT, a GP, and an ophthalmologist. The ophthalmologist part was interesting, just because she asked about my history with uveitis. As I told her, she looked at my eyes and began writing down info on a great doctor. She could see that my eyes were not symmetrical and that they were a little red.

Finally.

I am so excited.

Her nurses came in again and gave me a flu shot - while being hilarious. I spent like 15 minutes talking with one of the nurses, just hanging out. I almost didn't want to leave.

I feel like I'm in charge of my health, and that's exactly what I needed.

I feel so lucky to have such a wonderful doctor, and I can't wait to see any of them in the office again.

Christmas comes early

2011-12-18T20:58:00.000-06:00

Or, at least, I hope it does.

The last week has been amazing. I've watched everyone stress out about finals and studying, and not had to deal with it for once. It really was that sinking in moment since making my decision to stop school. My body feels a lot better than I know it would if I were doing all this school stuff.

Still, it's in rough shape.

A couple of days ago, my left hip hurt so much. It almost felt like it was swollen so much it wasn't in its socket. Way to be, hip. Then, of course, my knee started hurting. And then, because I was favoring my right side, that started hurting.

Seriously.

Now, tomorrow is something I've been holding out for for a couple of months - a new rheumatologist. I'm nervous, because I always am. I know I'll have to tell my whole story (for the 10 millionth time), get blood taken (blech), and who knows what else. I'm hoping to walk away with the beginnings of trust in my new doc, supposedly one of the best rheumatologists in Madison.

I'm also hoping to walk away with a few different medications, and a dosage change for my Humira.

Humira helped so much at the beginning. As it got colder, and my body got used to the medication, it stopped helping as much. I went from being able to hike miles this summer to being super out of shape and sweating and getting out of breath during a mile and a half walk with my boyfriend. I couldn't even do easy yoga poses last night that I can usually do easily. So lame.

Here are my main goals for my appointment:

See if she actually believes me about my pain
Get her to correct dumbo doctor's mistakes in my medical records
Check for fibro, depression ( :( ), and uveitis
PAIN MEDICATION THAT'S NOT IBUPROFEN GODDAMNIT
Dosage changes for current meds
Ideas for a good GP
Dietary/exercise suggestions
And maybe a fibro medication that helps with the sads too

I really really hope that things go well, because I really really need them to this time around.

Hey You Guys I'm NOt Tired - Oooh SHiny Things!

2011-12-10T02:16:00.001-06:00

Yeah, I used bad punctuation. I don't caaaaaaare.

I took 2 extra MG of steroids this morning - oh and I had more caffeine than I've had lately - and you know what? I've been up since 10am, it's now 2am and I'm still upppppppp.

Leg bouncing, full of energy. Try to sleep? Maybe? Dunno! Have a paper to finish. But too much energy maybe even for that because I can't focus on it holy caaaarp.

Maybe I can doooo my Humira shot! Oooooooh maybe.

K guys, thanks for listening to crazy energy girl who needed to expel energy on the blog poooooost!

Kthxbaiyouguys

Blah

2011-12-06T21:54:00.001-06:00

I'm exhausted, and all I've done today is been awake and perused social media and watched TV.

My left hip is killing me, and now my left knee as well, surprise surprise.

It's being a hard day and I wish I had just slept through it right now.

The Biggest Decision I've Ever Made

2011-12-01T12:22:00.001-06:00

This semester has been pretty difficult on me. I'm not ill with other things, like pneumonia or other respiratory illnesses like when I was on MTX. Unlike last semester, I don't feel 100% dead. But I am struggling. In thinking about things the other day, I came to the conclusion that school is no longer a real option for me. And, whereas last semester that would've freaked me right out, I'm okay with the decision now.

At this point, Arabic specifically is being offered earlier and earlier. It continues to force me to get up earlier and earlier. Unfortunately, it makes it very difficult for me to handle my disease. My Humira I think isn't helping as well as I thought it would. Hopefully it's just a matter of adjusting dosages. I'm also in so much pain lately. And it's not just an arm or a shoulder - it's my knees, my ankles, my hips - all those things you need to move around and do things. Even though my job is a lot easier, I'm still finding myself having to make the decision between whether or not I can go to school or to work - and I have to be able to support myself financially.

Sadly, I don't think that other people understand what I'm going through. And I don't expect them to. If someone sees me at work and knows I wasn't in class because of my disease, but I seem to look fine, it's hard to understand I know. And I am thankful that so many people won't know what I'm going through.

It's just about reevaluating my life. My plan was to work with the UN - in order to do that, you get stuck in the worst health countries first so you can work your way up. I can't do that. Then I thought I should be a professor - but if I can't even make it to classes to teach, what is the point? Why should I continue to accumulate loans when I can't possibly do what I want to with my education. I have learned Arabic, which is something I always wanted to do. And I will always study that part of the world, because it's fascinating.

But more fascinating to me is my own body and the struggles it goes through. I value more the comments I get and friends I have made because of blogging about my experiences. I have helped people just by being me, and that's amazing. After reading books and talking to their authors, like Christine Schwab, I know now what I want to do.I've been working over the past few days on a book about my experiences with my disease. I hope that it will help others, and I know that it is already helping me.

Now I just face the tough decision if I should really finish my classes this semester. It's not a good thing to receive bad grades, for sure, especially not for a former overachiever like myself. But at the same time, I don't think it's worth the stress to worry about my grades at this point. And again, I'm somehow okay with all of this. I don't even know how.

My mom always thought that I would be an ambassador someday. I think she's right, but not to a country - to Still's Disease.

Vlogging?

2011-11-07T14:15:00.001-06:00

Yes, I have decided to try my hand at vlogging. I'm still not sure how I feel about it. Check it out below:

Let me know how you like my vlogging as opposed to my blogging. I feel slightly awkward about it, but hey it's all good! It's the real me, so whatevs I say! But I would love to hear feedback.

What is it like to be stuck at home?

2011-10-26T13:48:00.000-05:00

On any given day, everyone wants to stay home. It would be nice to stay at home, lying around all day and watching TV.

But what if that was all you could do?

Not so fun huh?

Today is the first day out of the last few that I have felt well enough to do really anything. I did go to work the last two days, because I have to being in training still, or I'd lose my job. Not an option. It is hard to explain to my friends what exactly it feels like. But it's like being trapped in your own body and there's nothing you can do about it.

On waking up Monday, I could barely move. It got worse before it got better, and Monday night I was limping pretty good at work... which is okay, since I get to sit mostly. Tuesday was a little better, but still I was too swollen and in pain to do anything until like 2pm - and then the big thing I did was shower, something I physically couldn't do Monday. Yay.

When showering is your big accomplishment, it's a sad day.

All of this because I tried to taper my steroids down one milligram. It makes me mad that I am so dependent on them, but at the same time I am thankful I am not more dependent on them like many others I know. 5mg a day is much better than 50 or more. But I know one thing - I'm not going to make that mistake again.

Tapirs are cute - tapers are not

2011-10-24T11:27:00.000-05:00

I'm on day four of a 1mg taper of prednisone. It sucks. I'm entirely too tired and entirely too sore. This sucks.

But these guys are adorable:

Awwwwwwwww.

PFAM: World Arthritis Day Edition

2011-10-12T07:57:00.000-05:00

Happy World Arthritis Day (if that can be a happy thing)

Sadly, just like the last time I hosted PFAM, I barely got any entries. I am not quite sure why, but oh well I guess. It seems like a lot of people who used to participate in PFAM don't anymore unless the topic REALLY moves them.

The sole post that I have to share today is from Kathy over at FibroDAZE. She has gone through many changes in the last few months, and as such feel like she is living in her very own soap opera. When new medical issues pop up, life can definitely feel that way. Thanks Kathy for being wonderful and participating in this edition of the PFAM!

Late last month, I posted about my own personal dietary changes and how I thought they were helping. My suspicions are all but confirmed. It is very difficult to cut out staples in diet, like dairy products and gluten-full breads and such, especially for me. My father's side of my family is Italian and, while I did not know him growing up, my mom always encouraged me to embrace my Italian heritage. It is driving me crazy, not eating tons of breadsticks soaked in garlic butter and parm cheese... Or, likewise, one of my favorite things about Wisconsin is frozen custard. We didn't have this on the west coast/northwest, and I fell in love.

At least the best part about it is that I don't really crave those things that often anymore. One of the wonderful people who really encouraged me to look at alternate grains is a man I have barely interacted with, but who has shown me a lot about nutrition - Chef Brad. My boyfriend and I just think he is wonderful and he has helped the both of us handle trying to eat healthier.

When I have added in dairy or gluten, I can tell how horrible my body feels. After eating some gluten the other night, I felt as though I had a body hangover the next day. My finger joints were swollen, and my knees were horrible. I could not go to classes and I was lucky that I was able to go to training at my new job in the late afternoon/evening. Likewise, adding dairy to my diet just creates tummy troubles - the gurgles, the heartburn, upsetness, and even more fun.

While it will be hard to stick to, I know that this change is right for me. I have felt so much better between that and starting my new job. The three minutes of delicious breadstick eating is not worth the joint pain and stomach issues.

I'm just glad I can still eat potatoes :)

Repost: PFAM Call for Submissions

2011-10-04T13:20:00.002-05:00

I just want to repost this so it stays at the top!

_______

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here's September, and not only am I beginning to eat healthier, but I'm also changing jobs in a few short weeks.

So with that in mind, here's the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I'm excited to see what happens with the upcoming changes I'm making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog's name
3. Your post's title
4. Your post's URL
5. Awesomeness

I'm excited to read about the changes you've made in your life!

Am I Gluten and Dairy Intolerant?

2011-09-25T10:04:00.000-05:00

I think so.

Since my wisdom tooth surgery, I have been being nicer to my body and getting more protein. Part of that involved paying more attention to my metabolism - which right now is kind of crazy slow. Lame. But I digress. In paying more attention to that, I noticed that certain things make me feel horrible - not just sick to my stomach horrible, but I noticed that my RA starts to flare up more after certain foods. I thought maybe it was junk food. So then I cut back on that again and felt a little better. But the healthier I eat, the more I notice other issues.

When I eat things with a lot of wheat, or really any bread, my asthma picks up. And then about 20-45 minutes later, I feel crazy sick to my stomach. So I stopped eating bread. And then I noticed eating cereal did the same thing. I love cheese, and noticed the same thing while eating some.

And it occurred to me that what I've heard from people for years about dairy and wheat agitating RA could be right. So I stopped eating those things as much and have noticed that my arthritis is calming down.

Gluten intolerance symptoms are here. I'm amazed at how many I experience, and even more amazed that listed on there is juvenile idiopathic arthritis. It's just crazy. Lactose intolerance symptoms are here. I've always had rumbly tummy noises (to quote Pooh Bear), but never really knew why. Now it makes sense.

Supposedly, along with gluten intolerance comes an intolerance to fructose and sorbitol. Sorbitol I don't really encounter, because it is mostly in gums and diet foods and such that I can't have because of my allergy to phenylalanine. But frutctose I encounter a lot... because my worst vice is soda. I've always used caffeine to help control my pain, and I know that I shouldn't for many reasons, but I do. Oops. I also noticed recently that soda tends to increase the pain that I feel in my hands. So that's fun. I'm down to one soda a day (mostly) but have also noticed that I'm drinking alcohol more... which supposedly also helps RA be less intense. And I'm not an alcoholic looking for an excuse - there are studies! I promise!

So in the past few weeks, the boyfriend and I have begun eating at home more, incorporating more healthy grains and vegetables into our diet. We still eat out one or two days a week, but we save it for the weekends (or special occasions) and it's only one meal a day. We are spending more money at the grocery store, but less money elsewhere, and that is also helpful. It's not always easy to find foods without dairy or gluten, but I'm finding out the best places to look, and that's a start. Whole Foods has a lot, but so does Woodmans, a local grocery store.

It's fun to eat healthier, and I feel so much better lately. The only thing that will make it better is my upcoming job change. Standing on my feet for 8+ hours, the stress, and all the things I end up doing extra are not worth the pain that I then experience... especially since it seems as though my current employers could really care less about the accommodations that I need... which is really sad, but oh well I guess. I could be mean, and take it further, but since I'm leaving I won't. I'll just get excited about this being my last real week, save two more shifts the weekend after next.

PFAM: A Call for Submissions

2011-09-20T16:31:00.002-05:00

Hey! I had so much fun last time, I was really excited to get in on hosting this edition of Patients For A Moment, or PFAM.

Recently I have gone through some interesting life changes. In late June/early July, the boyfriend and I moved in together. In August, I had oral surgery. And now here's September, and not only am I beginning to eat healthier, but I'm also changing jobs in a few short weeks.

So with that in mind, here's the topic for this edition of PFAM:

What changes have you made for the better this year, and have those decisions helped as you thought? If so, yay! If not, what do you wish was different about the outcomes?

Personally, all of my decisions have worked out well and I'm excited to see what happens with the upcoming changes I'm making. But we will see.

Email me your submissions by 11:59pm on Sunday, October 9th to walters4-at-wisc-dot-edu. Your email should include:

1. Your name
2. Your blog's name
3. Your post's title
4. Your post's URL
5. Awesomeness

I'm excited to read about the changes you've made in your life!

Invisible Illness Week 2011

2011-09-16T13:06:00.000-05:00

I know I've done at least one of these '30 things' posts... But I feel like my answers could change all the time, and it's worth posting again so here goes.

1. The illness I live with is: Still's Disease/Systemic Onset Juvenile Rheumatoid Arthritis

2. I was diagnosed with it in the year: 1994ish?

3. But I had symptoms since: November 1993

4. The biggest adjustment I’ve had to make is: learning how to rest lately

5. Most people assume: that I'm fat, lazy, and don't feel like I have to do anything. Yay me!

6. The hardest part about mornings are: dealing with morning stiffness and pain

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: my iPod touch - it really does everything

9. The hardest part about nights are: getting to sleep

10. Each day I take __ pills & vitamins. Well that varies for me - anywhere from 3-7.

11. Regarding alternative treatments: I've recently figured out that lactose, gluten, and stress largely increase my pain, so I'm trying to cut down on all three. Also, yoga is awesome.

12. If I had to choose between an invisible illness or visible I would choose: In the past I've been on the fence with this question, and I still think I am. I'm tired of people assuming I'm using my disease to be lazy and work less and have things go the way I want them. But I also would rather deal with that then possibly being in a wheelchair. Sooo, I don't know really.

13. Regarding working and career: I'm in the middle of switching jobs, but I'm basically working to pay bills while I'm going to school right now.

14. People would be surprised to know: how I work through such intense pain. They think I use my disease as an excuse, but they also don't see me struggling to walk in my own apartment...

15. The hardest thing to accept about my new reality has been: having to slow down so much compared to when I started my blog. It's really hard to deal with the fact that my body is getting worse and I'm really scared about what this will mean for my future :(

16. Something I never thought I could do with my illness that I did was: be happy

17. The commercials about my illness are SO misleading. They depict people who can finally run around again... Not to mention they ALWAYS depict older people, thus continuing the stereotype of arthritis as an old person's disease.

18. Something I really miss doing since I was diagnosed is: Not a lot really changed, because I was so young.

19. It was really hard to have to give up: I miss running. I don't get to do it that often anymore.

20. A new hobby I have taken up since my diagnosis is: everything! What hobbies does a six year old really have? :)

21. If I could have one day of feeling normal again I would: go run a marathon

22. My illness has taught me to: slow it down

23. Want to know a secret? I want to punch people in the face when they suggest a ton of vitamins and supplements.

24. But I love it when: people try to understand even though I know they can't.

25. My favorite motto, scripture, quote that gets me through tough times is: "Don't be better. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life." - Stephen Colbert

26. When someone is diagnosed I’d like to tell them: keep your chin up and find a doc that really believes you. Get a great support staff going and learn as much about your disease as you can - it'll help you educate others.

27. Something that has surprised me about living with an illness is: how rude people can be about it.

28. The nicest thing someone did for me when I wasn’t feeling well was: my boyfriend is constantly doing things to help me cope, from helping me accomplish tasks to providing emotional support.

29. I’m involved with Invisible Illness Week because: no one knows what it's like, and I've bee dealing with this forever. I want to get people to understand better.

30. The fact that you read this list makes me feel: sorry if you've read it before, but grateful that you've spent the time to learn more about me!

When Ugliness Returns

2011-09-13T21:24:00.000-05:00

I was SO excited after my wisdom tooth surgery - my arthritis had dissipated and was calm. Everything was wonderful...

Until the Friday afterwards, when people at work fought and I got to go deal with it. Ugh.

I won't get into the whole situation, but just a few days before as soon as laughing gas hit my face, my body was perfect. Yeah, okay, so I had some gaping holes where a few teeth used to be, but other than that... Returning to work made my body hurt exponentially more.

So what did I do?

Well, I've found a new job and will be starting that in early October. While I will be sad to leave some of the people that I currently work with, being in management while going to school and handling this disease is just not something I can do. Part of me feels like I'm giving up, but the other (bigger) part knows that I'm doing what's best for me and that I'm being realistic.

My new job will let me sit down all the time. I won't have to run around and move heavy things. I also have no direct interaction with angry people, nor do I have to make it right. Instead, I will spend my time captioning one half of a phone call in order to help people who are hard of hearing better understand their friends, loved ones, and random people. So I also get to feel a lot better about what I do for a living.

And they have benefits. I dunno what they will be like and won't know until orientation I'm sure. But that's exciting, and hopefully helpful. And I will get full time hours too. Yay.

Now I just need to get through the rest of the month and the six days I will have to work overnight before I am done. And talking to my boss tomorrow morning. Awesome.

La Vie Boheme

2011-09-04T16:36:00.000-05:00

The latest Patients For A Moment (or PFAM) blog carnival topic focuses on music, which I absolutely love. Phylor has asked us to explore, essentially, the soundtrack to our illness. I find it funny timing that she would pick this topic. Here's why.

Last Sunday, while amping myself up for my wisdom tooth surgery the following Tuesday, I did something that I've always wanted to do. I woke up late. I popped open a gigantic bottle of Arbor Mist Sangria, my favorite wine. And proceeded to drink... while watching the Blu-Ray DVD Rent: Filmed Live on Broadway. It is the filmed final performance of the one play that I can say changed my life.

When I was in high school, I was in an abusive relationship with this kid pretty much from my sophomore year until graduation, give or take a few break-ups in-between. My senior year of high school is when the bulk of the break-ups came, because I realized what a bad situation I was in and I knew I needed to get out. Up until then, I had a kind of 'whatever' mentality regarding things. I knew that people didn't believe I had an illness, especially with the lack of doctor's visits due to my family's income. I figured that I had found the best I could get - which clearly I now know was so far off.

The biggest change my senior year of high school was that my best friend, my uncle Nathan, moved back to Eugene with his family. Having just gotten out of the army, they moved in with us. Nate has always been a huge help and encouragement to me. So when he and his wife introduced Rent to me while I was home sick for a few days, my eyes opened up to a lot of things. Each time I listen to or watch Rent, I take something new away from it. While I enjoy the movie, released in 2005, I will always love the music itself more. But watching the actual play, on Broadway, was sadly something that I wasn't able to do. So when I saw this DVD last weekend at Barnes & Noble on clearance, I snatched it up quickly.

If you don't know the basic story line of Rent, it's about a group of friends dealing with disease, discrimination, relationship issues, poverty - life, essentially.

Here are just a few of my favorite songs and lyrics from Rent:

One Song Glory:

Find/the one song/before the virus takes hold/glory/like a sunset/one song/to redeem this empty life/time flies/and then no need to endure anymore/time dies

Life Support:

Look I find some of what you teach suspect/because I'm used to relying on intellect/but I try to open up to what I don't know/because reason says I should've died/three years ago

Will I:

Will I lose my dignity?/Will someone care?/Will I wake tomorrow from this nightmare?

But my favorite song above all is I'll Cover You. If I posted it, I'd just end up posting the whole thing. The lyrics are here and the song itself is here. The reprise is here and, no matter how many times I watch or listen to this play, I can usually hold back tears except for when Collins begins to sing. His relationship with Angel is so sweet and, spoiler alert, when Angel dies because of AIDS, it is the saddest thing.

But not all of the music from Rent is sad! Check out songs like La Vie Boheme and Out Tonight. Rent has something for just about everyone, and is truly a celebration of life - with all the good and bad included. That's why I really think it is the soundtrack to my illness. I have good times, bad times, and horrible times as well. There are times when I want to go out and dance my butt off, and other times where I feel like no one is there for me and I'm all alone dealing with my disease.

Surgery!

2011-08-31T14:47:00.000-05:00

So I've thrown up again. Yay.

I had my wisdom teeth taken out yesterday morning. The pain isn't quite as bad as I was expecting. The right side is worst, but that's where four teeth were taken out, as opposed to two on the left. I only had three wisdom teeth apparently, but also needed the tooth immediately in front of each wisdom tooth removed due to breaking.

I just miss eating. What I do eat I seem to throw back up because it's not enough to help me stomach the pain meds I'm on... which isn't too surprising since it's twice as strong as what I normally take.

Odd side comment - my knees feel amazing. As soon as that laughing gas hit my system yesterday, my knee got crazy shakey and now haven't hurt at all. I'm kind of loving that.

Well, I'm sure I'll be blogging more as I throw up more, haha.

Run/Walk to Irish Fest and Surgery!

2011-08-29T10:25:00.000-05:00

Whoa, it's been a while since I blogged. Oops.

The walk was an amazing success overall. There were a ton of people, and it was fun. You can take a look at the pictures and such here. I'm not in any, but some of my friends are once you get in the 34-ish page range. Yay runners! Thanks again guys for coming out and supporting the Arthritis Foundation.

I'm having surgery tomorrow :(

It's not that big of a deal. I'm just getting my wisdom teeth taken out, along with three other broken teeth caused by my wisdom teeth. So much fun. I am not excited to do it, but really excited to have it done with.

So I may be blogging more this next week. But don't expect it to make sense, haha.

Wego Health RA TV

2011-08-19T00:22:00.002-05:00

Hey guys, check it out. My first video for Wego Health is up over on their RA channel.

Enjoy!

Share Your Favorite Rheumatoid Arthritis Activists & Resources with WEGO Health!

2011-08-08T20:38:00.000-05:00

Hey guys! I'm sure by now you guys already know that I work with Achieve Clinical, blogging about my RA experiences. Well, I'm going to be working with an additional site, and am really excited about it.

For those of you who aren’t familiar with WEGO Health, they’re a different kind of social media company – with a mission to empower the top 10% of online health social media contributors to connect with one another and with healthcare companies. They call those folks Health Activists – but they’re people like me and you who are community leaders, bloggers, on Facebook, on Twitter, leading online forums, and usually “all of the above.”

As part of their mission, WEGO Health has recently launched a new Health Activist video platform called WEGOHealth.tv where they are presenting the authentic voice of the online community in the form of Health Activist-created videos and resources.

Right now, they’re working on a Rheumatoid Arthritis Channel and they’ve asked for my thoughts on resources and video ideas. I wanted to make sure that all of you had a chance to weigh in as well so I hope you’ll take a minute and let them know what you’d like to see on the channel! You can share your resources and ideas (or just sign up to get notified when the channel launches!) here: WEGOHealth.tv Rheumatoid Arthritis Channel.

By sharing our favorite resources and tools, we’ll help to make this new Channel as valuable as possible.

/end pre-written transmission/

But seriously, you guys should check it out. I'll be posting little video snippets of myself talking about my RAxperiences (yes, I just made a new word) and all the fun things I go through. If you have any topic ideas, totally share with me and I can pass them along!

I let you guys know when the channel is up and running, but it's expected to be set up by next Wednesday I think.

Yay activism!

Supergirl!

2011-08-06T07:39:00.000-05:00

The boyfriend and I went hiking yesterday out at Devil's Lake. It was gorgeous and we had a lot of fun. It was nice to do something more physical on my day off from work. I haven't really been able to do that lately.

But holy cow, we were like billy goats up there. We started on this trail that was 0.4 miles up the side of a mountain-esque hill (compared to Oregon, Wisconsin has no mountains). But what we failed to realize until it was too late was that it was a back and forth trail, basically straight up the side of this thing.

I'm glad we had our walking sticks. And that the slippery, dusty rocks didn't let either of us biff it all the way back down.

My body is less sore than it should be. And I'm not excited about it. That just means it will get worse on that second day. Lame.

But I was SO impressed with both of us and our abilities to keep going up this trail - and then down another one. My legs got real shaky and, in some points, my left knee wanted to give. But we made it and rewarded ourselves with a dip in the lake.

And we went to see The Tempest at the American Player's Theatre. It was pretty awesome. I forgot how funny that play in particular was.

And now I'm at work. I'm sure that by 3pm when I get off I'll be super tired. Yay.

A really really vulgar rant

2011-07-30T21:24:00.000-05:00

I just found out that someone tried to steal money from my bank account via hacking my PayPal account.

So, understandably, I need to rant. Please forgive this post. /end apology/

SERIOUSLY?!?

Out of all the people, you went for the girl with a crappy account balance eh? Wanna know why? Because I'm horribly sick, have been and will be all of my life. I will probably die 10 years earlier than anyone else I associate with, because of all the fucking medications I pump into my body in an attempt to be 'normal' - something you probably are with the exception of trying to rip people off. You probably don't have to REALLY think about if you need to pee bad enough to actually get out of bed and hobble the 15 feet over to the bathroom. You also probably can do things with a normal schedule, not having your body change how it feels and what it can do every five minutes. You probably have never known the horrors of waking up to a huge swollen face like a sumo wrestler and not really being able to see because your arthritis is flaring up in your face.

You also probably don't go to school full time and work full time. You don't know what it's like to have to balance so many things at once, especially when your health is shit. If you get the flu, you probably stay home for a day and then are fine. If I get the flu, I have no choice but to work, go to school, and deal with my broken body. I probably then get even sicker, and end up spending the days off I DO have in bed trying to recover.

The economy sucks, sure. Maybe you don't have a job, so all you do all day is try to hack into accounts and have them purchase fake iPhones for $700 dollars.

But, you know what?

I work my fucking ass off for MY money. Being sick all the time isn't cheap, and neither is needing crazy amounts of medication or going to doctors and dentists once a month. So next time, so fuck with someone who has a cushy job and won't miss the money. I have rent due on Monday and hopefully this all works out. If not, you're gonna fucking get it.

/end rant/

I'm gonna go to the gym now.

UGH.

Fun Links

2011-07-20T21:42:00.000-05:00

If you haven't taken a look at my team's page for the 2011 Run/Walk to Irish Fest coming up in August, please head on over and take a look. The money goes to help our cause. Even if you're not in the area, we're always looking for donations!

Did you know that there is a rap song about RA? Well, there is! Head on over and take a listen. MOEtivation samples a Nina Simone song, which I think just makes it that much better.

Opportunity, one of the rovers up on Mars right now, apparently has an arthritic shoulder problem. Who knew machines could get arthritis too?

The Dutch are currently working on an implant to be put in the neck that could help control inflammation for RA. Right now they're moving into a possible trial phase. I think this could be an interesting device, but it is hard to work to cure a disease when you don't know the cause.

Did you ever wonder where jacuzzis come from? Rheumatoid arthritis and wine. Mmmmmm.

Sometimes it feels like you need a little luck to get through bad days. These jerks have hogged all your luck. Nah, but seriously, that is a pretty neat story.

2011 Run/Walk to Irish Fest in Milwaukee

2011-07-18T01:15:00.000-05:00

HEY YOU GUYS!

Do you want to do something awesome?

Good!

Please click this fun link here and take a look my team's page for the 2011 Run/Walk to Irish Fest in Milwaukee, Wisconsin. If you're local, consider signing up for my team! If you physically cannot - or are too far away - think about donating, eh? If you're not in the position to do either, then just root on my team and try to spread the word :)

The event is sponsored by Abbott Immunology and we all know how much I'm in love with Humira - especially now that I figured out stomach shots are SO much better than thigh shots. Yay!

Chicago (again!)

2011-07-17T21:38:00.001-05:00

Wow. I am exhausted...ish. I should be WAY more exhausted than I am though I think. So this Humira stuff must be working :)

I did not get called back for The Voice. I hit a flat note in my song and my eyes met with the judge in a horrifying moment and we both knew I wouldn't be anyway. I say, oh well! I tried out and it was fun (aside from being a mere FIVE hours of basically standing the whole damn time). It doesn't make sense for me to go be on the show right now anyway. I'm finally really happy with most everything going on and don't want it to change.

But the boyfriend's birthday in Chicago was pretty fun. We went down Friday and enjoyed the Brookfield Zoo. I was super proud of us that we remembered to bring the sunscreen :) Then we had some delicious Connie's Pizza before getting up early Saturday for me to stand in long lines and him to wander around Navy Pier. It was a tense, and yet relaxing, few days off.

I'm doing my Humira shot tonight and, hopefully, miss some of the fun injection effects while I sleep.

Tomorrow I have a fun list of things to get done before work. I'm hoping that I can get it done quickly and be kind of lazy... although I kind of really like playing housewife. And lately I've been dressing the part, in my cute retro outfits.

One of my friends got a tattoo today and I kind of really want one now! I'm looking at getting Arabic writing, but am unsure what to get. But all the words I have written down are awesome, like "strength" "fighter" "perseverance" and "determination" which Angelina Jolie actually has on her arm. Cool.

Also! Please check out my latest post over at Achieve Clinical filled with summertime tips for us spoonies :)

The Voice

2011-07-06T21:31:00.000-05:00

Have you seen the show "The Voice" ? It is American Idol-esque, except run in the beginning completely based on your vocal abilities alone. The auditions are blind, in that the judges do not face you when you enter and instead turn around only if they want you on their team. Oh, and the judges? Just people like Christina Aguilera, Cee Lo Green, Adam Levine, and Blake Shelton.

'Sha, it is kind of a cool show.

Chicago auditions are July 15th & 16th. I magically happen to have those days off because of the boyfriend's birthday... So yesterday, I may have signed up for auditions on the 16th.

I am so freaking excited right now. And more nervous than I've ever been in my whole life.

If I go and I fail, then whatever, I blew a day hanging out on Navy Pier in Chicago. Not the end of the world. But I'm almost more nervous about making it than failing. If I make it onto the show, this could be the start of a whole new life for me - one that I've known since I was five that I wanted to pursue. But my disease limits what I can do with instruments, and even my piano playing is not going... well, it's basically non-existent for right now.

So I have ten days left to get ready. I have to prepare two songs and I'm already completely baffled as to what to do. But I kind of know what I want to wear, so at least I have something in mind? Truth be told, I'm not sure how much I will post between now and then, but if I get called back, I will definitely let everyone know!

Writing Prompts

2011-07-04T22:44:00.002-05:00

Okay, not that someone who is sick needs them, but I discovered a page of writing prompts today that I really like. You can view the site here, and click 'get inspiration' for new prompts. I've gone through several already and I love them. So, in an effort to get myself to write more, I shall be posting some responses to these prompts and maybe others comment their answers too and we can all have fun with it!

The one I just saw (and of course clicked through, d'oh!) went something like this: "The world is going to end tomorrow unless you get a giant tattoo covering your entire back. What do you get?"

I thought about this one for a while. I have wanted to get a tattoo but am worried about the swelling afterwards and also not super excited about needles... or how the tatt will look when I'm old. I love peace signs - they are probably my favorite thing ever. Yup, hippie chick here. And yet, a giant peace sign wouldn't cut it, you know?

I want this:

:)

Happy 4th!

2011-07-03T08:16:00.001-05:00

I hope you guys enjoy your holiday! Make sure to have sunscreeeeeen!

Achieve Clinical Post!

2011-06-27T21:40:00.001-05:00

Oh man, I almost forgot! My latest post for Achieve Clinical just went up!

http://www.achieveclinical.com/news/working-with-arthritis-my-experience/

Moving Done!

2011-06-27T21:35:00.000-05:00

Well, pretty much.

And I feel, relatively speaking of course, great. I've spent a while each of the past three days enjoying the fact that our apartment complex has a pool, heated to 84 degrees. We had just about everything moved over on Saturday, thanks to my boyfriend's family and close friend. And we spent yesterday getting the last few things out of our other places and getting things all settled.

And, for the first time in a year, we have cable! I'm loving the Smithsonian channel right now, and we've only had this up and running for about five hours today.

Tomorrow is my last day of freedom before returning to work. Laaaaaammmmeeeee.

I recorded my Humira shot... Kinda

2011-06-22T12:37:00.002-05:00

I tried anyhow. You can have fun watching me:

Pre-Humira shot- http://www.youtube.com/watch?v=RYIowWW-x44

Post-Humira apologies- http://www.youtube.com/watch?v=Jv5lC0cRdTs

Yay shots.

It's almost moving time

2011-06-18T09:15:00.000-05:00

So it's exactly one week until the boyfriend and I get the keys to our place. I am super excited about it, all except the actual moving part of course. We're going to have tons of help, so that should be no issue. But I also find myself extremely worried.

I won't have a day off until next Saturday, which is fine, but I am worried about how my body will react to all this working and then having to lift things. I am so much weaker than I was last year.

Well, weaker isn't the right word.

I've been working out and building muscle. It's easier for me to lift things. But I also get tired so much more quickly now and that's really what I'm worried about. I shouldn't have to carry anything that heavy, but it also doesn't feel right letting other people do all of the hard work.

No, weak is not the right word. Useless is too strong. Inept makes it seem too odd.

I guess there's no one word to encompass it, and maybe that's the fun part about dealing with a chronic illness. There's no easy way to explain to others how I feel. I am worried that my body will crap out on me, right when I need it to work the most. And worried about other people seeing. I'm okay with my boyfriend seeing how tired I am (to a point) or close friends. But even then, I distance myself from them and don't really allow them to know how I'm feeling. I feel like I 'complain' too much about my body as it is, and don't want to burden everyone with everything all the time.

After the move, I will just be counting down until August when I can look at switching doctors or at least visit a GP who can give me pain medication. It would be nice to have something stronger than 600mg ibuprofen right now.

Exhaustion

2011-06-16T09:45:00.001-05:00

In the last couple of days, things have been crazy at work. One of three girls who work the desk quit with no notice, the third to do so in the last month. And, with my recent promotion, guess who gets to handle the brunt of things?

Yup, me.

Monday was a normal 8 hours, as it was the day before the other girl quit. Tuesday I worked close to 12 hours. Wednesday was a normal 8 hours. And today I work a whopping 11 hours. So basically, I will have worked 40 hours in four days, with two more work days this week left for me.

Holy cow.

I can't do this anymore. My body is breaking down and I spent all of last night lying down with my entire left side attempting to ruin anything I wanted to do. Lame.

RA Superbitch

2011-06-15T08:44:00.000-05:00

I found out about RA Superbitch's passing a few days ago. I did not know her all that well and we only had contact a few times, but she was so inspirational. She stood for strength and the ability of someone to handle some of the most difficult problems one can be handled in life.

I think that it's hard to deal with anyone's passing, especially someone that you looked up to. I was shook by news of her death. I knew she had not been well, even for a spoonie, for a while but I don't think anyone in the blogging world expected her death. Or the two recent suicides from others suffering from RA in one of the support groups I'm a part of - RA Chicks.

Death cannot always be looked on as horrible though. I think the reason we see that is we are selfish. We are angry that we no longer have that person's presence in our lives - and sometimes jealous that we aren't the ones relieved from pain. At least, I found myself thinking that, and I don't think I'm the only one.

Bobdammmit

2011-06-11T13:02:00.000-05:00

It's not like I'm not stranger to the pain my arthritis causes. I've dealt with it for almost 18 years now and I'd like to say that I think I handle it pretty well. But this change to affecting my hands more is still driving me absolutely bonkers. Like seriously, this is way too different body. I do so much more with my hands because I can't do as much with the rest of my body.

It's like all those little tiny spots in my hands, all those small intricate bones, are all swollen and painful. And it's like I don't know what to do at this point. Maybe when my insurance renews in August I can switch to a primary doctor away from the university itself so I can get some sort of pain medication. Until then I guess this is my life.

Blech.

And now I feel fat...well, ish.

I had to measure myself for some new work clothes we are getting and seeing the change in inches from high school to now is... well, disheartening. I know that weight is not the thing to be concerned with for me, as it fluctuates a lot because of swelling. But the inches are a different story. It's also much more telling of how the steroids have added weight. I'm well-proportioned so I don't really notice normally. And now I feel lame. And fat. And ready to kick up the cardio.

Well, cardio that doesn't include gripping anything that is.

Running Through the Rain

2011-06-09T21:17:00.000-05:00

Sometimes you just need to run through a rainstorm.

I am a firm believer in the fact that everyone needs to have some spontaneous fun sometimes. And what could be better than running through a rainstorm?

Yesterday was my third Humira shot. I was running short on time so I couldn't tape it. Hopefully next time though. I think it is helping after all. This morning my fingers were the thinnest and longest looking I've ever seen them. It was amazing. I wish it lasted a little better though. But still, to have loose skin on my fingers is awesome :)

I'm getting excited about moving. Just two more weeks! Today, I spent my pre-work hours packing up my DVDs, CDs, and books. So now I just have my knick-knack things to go through and my clothes to finish. I gotta decide what all I'm going to use in the next two weeks. Maybe I'll just wait to do that last.

I can't wait to get everything moved over and set up in our own place. Wake me up on the 23rd so I can finish packing!

RA Blues... Again

2011-06-01T15:38:00.000-05:00

I had a really hard day yesterday. I woke up with my back hurting and feeling like hell. I wish I could say that sleep gives a reprieve from pain, but often my dreams involve similar pain - probably my body responding to the physical pain I'm in. Last night, for example, I dreamed that I was a Starfleet officer fighting the Maquis when interstellar zombies attacked. Yeah, I got hurt... a lot.

But yesterday, not only was I physically in a ton of pain but I also came to the realization that, in all likelihood, this will be the only kind of life that I ever know. And that is the worst kind of pain to deal with.

I'm not usually one for feeling sorry for myself, but we all have our days I'm sure. My self-pity turned into freaking out over my upcoming move and projecting my fears onto the boyfriend. I don't feel like it's fair that he has to deal with my shitty body and how it just decides to act. But in talking about it with him, I think I feel better about it.

He said, "It's not fair to assume I don't want to 'deal with' it."

I still have a lot to learn about what it is like to be on the outside of my disease. Just like people who will never understand what it's like to be sick, many of us I think will never really get what it's like to be 'normal.' If I ever had the option, I would choose to not deal with RA. So I guess I just always have assumed that people dealing with it - that it's just to put up with X because of Y before getting annoyed/tired/frustrated and moving on to something better.

Maybe 'normal' is just a term used to marginalize everyone who doesn't have special circumstances... except that we all kind of do. So what's the point of the label?

Out of Joint: a review

2011-05-29T13:37:00.000-05:00

I finished my papers finally and, while I'm not super happy with them, I think they will do. But that left me with some free time yesterday. I know, weird right? So I picked up a book that my boyfriend checked out of the library - "Out of Joint: A Private and Public Story of Arthritis" by Mary Felstiner.

For the first time in years, I picked up a book and devoured it. Somehow I think it was because some of it was so familiar.

It's a great book, but I found it really difficult to relate to... because much of the book centered around how things changed for Mary and how she missed her life before RA... And I don't have that.

When I remember, I seldom remember pain - or, if I do, it is a lot less intense, I'm sure, than it actually was at the time. But that is all that I remember really. How many people have lots of memories from before kindergarten anyway?

Her book is good, and definitely worth a read - especially for our significant others. I'm really excited for when my boyfriend gets to that book, because I think it'll help him understand me a little better - how I don't like to talk about my arthritis, how I can still be so worried and trying to help others despite my own condition, and many of my fears.

Mmmm Humira

2011-05-22T11:42:00.000-05:00

I was approved for my free Humira! Yay! I'll get my shipment on Wednesday, so that'll be good. I'm definitely starting to ache again today, so hopefully that will help.

I got a promotion at work which is awesome, but it requires me to work a little more especially now that one person just quit with no notice. It's a salaried position so that's nice too. Too bad there's no insurance.

I have two papers to finish by the end of the month. Other than that, I'm just counting down the days until the bboyfriend and I move in together. I'm excited for many reasons, but I think it'll help me feel better physically since he seems to have that sort of voodoo magic over me. It's kinda awesome.

I'm ready to go back to bed, mmm. Silly work interrupting me.

What's it like to be sick all the time?

2011-05-16T12:04:00.000-05:00

To find out the answer, check out my second post with Achieve Clinical: http://ht.ly/4VeTL

Don't stop, get it, get it

2011-05-13T20:30:00.000-05:00

Well, the weather here in Wisco has been beautiful. And I wish I could be out enjoying it. I'm dealing with a cold. And we've been under an air quality alert, meaning those with compromised immune systems should be careful how much time they spend outside. Lame.

But Tuesday, I went to the gym and I busted that butt... while playing sudoku. Aw yeah. I was able to run a little bit and bike like crazy for like 20 minutes. And then I set up an appointment with a physical trainer for this coming Thursday. I'm a little apprehensive about working with a guy versus a girl, but he also has arthritis so that kind of makes up for the worry. He really seems like he knows what he's talking about, so I'm excited.

The last two days, I have felt like poop. I want to sleep - and have - a lot more than I should have. I keep trying to fall asleep wherever I am, so that kind of sucks. Hopefully that and my cold clear up soon.

BUT! The super exciting news is that I just got promoted to front desk manager at work. So I'm pretty excited about that. Well, as excited as I can be with being so tired. At least I'm good at faking excitement and energy so I don't look sluggish.

I should have a new post up over at the Achieve Clinical site soon, and will put up a link once it's active.

My first Humira shot

2011-05-07T16:09:00.000-05:00

Okay, so I'm thinking I'm just going in to get my TB test read and get the financial assistance paperwork to fill out on Thursday, right?

Well, I ended up with a free shot of Humira too.

I just would like to say that I hate injections even more than getting blood drawn. They're far more painful physically, that's for sure. Well, the Humira is no exception. Because it is refrigerated, I'm sure that adds to the funky stinging - but the nurse also explained that it's a completely different pH than the human body, so the stinging pretty much is always going to happen.

My initial reaction was to pull that sh** right out of my leg, but you have to hold the pen-needle in your skin for 10 seconds. I made it, but it was tricky definitely. I'm glad that there's only one shot every two weeks cause who knows if I could handle that for longer. But I'm willing to try anyhow. So that counts for something, right?

At least I know other people on that drug to talk to if I think something is going wrong.

Guest Blogging?

2011-05-04T17:26:00.000-05:00

So, a few of us health bloggers have landed a guest gig over at the Achieve Clinical website. My first post went up yesterday. If you know my back story, it's pretty much the same, but with some new information added and such. I like it :)

It's almost been 2 weeks since my last mtx dose. And I'm dealing with some withdrawal symptoms, but I don't feel like a zombie anymore, so I think that's a fair trade.

I had the start of a TB test yesterday and will go in tomorrow for them to read it. I also will need to figure out if I can get my Humira free, cause I'm a poor girl. And right now my co-pay is too much to be fully covered by the co-pay card they have. So that'll be fun. Because of all of that, I'm not sure exactly when I will start, but hopefully soon.

I just banged the crap out of my knee on the coffee table in the lobby at work. Bad decision, oh man.

THIS IS SPARTA!

2011-04-30T18:10:00.000-05:00

Imagine the enthusiasm and anger with which the handsome Gerard Butler screams this phrase while kicking that other dude into that hole. Now imagine a pissed off patient in a rheumatologist's office.

Okay, so it didn't quite go like that.

I told him straight up I'm done taking the mtx, so I'm not taking it anymore. And I feel so much better already!

I should be starting Humira soon, but will be needing to get financial assistance with that. Walgreens called to tell me that was ready today. Eep. Waiting for my TB test Tuesday/Thursday and then I'll learn how to shoot myself up. Yay!

Also, I've been offered a really unique ability to blog for another website. But I'll have more about this later!

Tonight, I'm off to a free 80s vs 90s music battle/concert/awesome event. And, since I'm off the mtx and can drink a little more now, I plan on thoroughly enjoying myself :)

"Remember your hippopotamus oath!"

2011-04-19T00:07:00.000-05:00

After hearing from my primary doctor FINALLY, my rheumy's nurse tried to call me today to get me to come in sooner. I'm not going to do it.

At this point, I'm not so sure I want to even go in on the 28th.

From what my primary care dr said, it seems like all my rheumy wants to do is reevaluate my current medications and give me a referral to the pain management clinic... just like I said.

I just don't know how to handle the appt at this point. Thoughts?

Ugh

2011-04-11T18:24:00.000-05:00

I feel like I am having the worst day ever.

I couldn't sleep last night because of a killer migraine. Who knows how much actual sleep I got, but it wasn't much. Of course, the migraine had to set off my wisdom teeth too, so that made my night/morning that much better.

That finally stopped, and now my fingers are hurting like crazy and spasming a bit again, despite my muscle relaxants.

Oh yeah, that was pretty much all my primary care doc would do for me - muscle relaxants & new migraine meds. I didn't try the latter, but we'll see if they're better than imitrex.

The best part about all of it? She doesn't understand why my rheumy wouldn't handle pain meds either. Apparently, she's going to give him a call. But that'll just result in him telling her to send me to the pain management clinic, which will be crazy expensive and take forever to get into.

Oh well, I tried.

Also, I found out I didn't get my fellowship that I applied for. At this point, I'm ready for a break from school and would like to just exist for a while. We'll see what happens.

A world of pain

2011-04-10T14:19:00.000-05:00

Okay, so my rheumy's office apparently doesn't handle pain meds. Not quite sure what to think about that. They 'treat' the disease, but not the symptoms? Except if I'm flaring, I might be able to get more steroids...? Something here doesn't make sense. They weren't even willing to discuss any of that with me. Whatever.

So in the meantime, life sucks. I have an appt with my 'primary care' doc tomorrow. Hopefully she can give me something for pain. Otherwise, it's a referral to the pain management clinic... which I'm sure would be helpful, but I just can't afford it - the cost or the damn wait.

Bah!

Now we play the waiting game

2011-04-05T22:58:00.000-05:00

I called the DR's office today, to get better pain meds. I am missing classes that I'd rather not be missing because I'm in so much pain that I can only make it through one class - if I'm able to go at all.

Supposedly I'll hear back tomorrow or Thursday. I'm really pessimistic about what he'll say, since he "doesn't prescribe narcotics" and this damn ibuprofen makes me crazy sick to my tummy, yo.

Can we fast forward a few days?

My aching feet!

2011-04-03T07:40:00.000-05:00

I have worked the last four days in a row (including today, so by 3pm anyway). Normally, that wouldn't be an issue, but I haven't really worked a schedule like this since I started my mtx. And boy, am I tired.

My feet are killing me - probably because I haven't really had an opportunity to sit down at work the last couple of busy days, while I'm training someone new too.

We're a little under-staffed at work, so I've been doing more to help out. And I've even been proactive and offered to take over social media for the hotel. So that's kind of fun. But I've run out of energy. It's a good thing I have tomorrow off (but I have to write a paper! bah!).

I'm looking forward to being able to get a little more rest once we get back up and fully running, but who knows when that will be for sure right now.

All I know is I'm ready to be done with work for a few days.

The world through bloodshot eyes

2011-03-30T22:23:00.000-05:00

I'm slightly worried about my latest eye results now. My right eye is the one that has a slight prescription issue. Which, whatever, no big deal on its own.

But I've also noticed my right eye is constantly getting all bloodshot.

Is there a correlation? Maybe?

I'll bring it up at my next rheumy appt at the end of April.

Help! I need somebody

2011-03-25T20:56:00.000-05:00

This next edition of the Patients For A Moment blog carnival is hosted by Possibilism, and the topic is all about help.

First, let's get one thing clear. I hate having to ask for help. I am my own person, and very much into making things work on my own. But sometimes it's an inevitable part of life, especially for those of us facing chronic illnesses.

Usually if I ask for help, it's with little things that I just don't feel like fighting - like opening jars and packages. I tend to avoid cooking as well, not just because my boyfriend is an awesome cook but also because of how difficult it can be to grip cookware and my tendency to drop things.

And even then, I'm mainly asking my boyfriend to help me out with things. Asking anyone else is absolutely out of the question.

Often, I feel like asking for help means I'm not good enough (or normal enough) to complete said task. And there's no way I'm openly admitting that to some random person.

But I have to learn more how to cope with needing help. We'll see how long that takes me to learn.

The Best Part of Waking Up

2011-03-24T10:03:00.000-05:00

Does not involve wrapping ankles and missing another day of work study.

Mmmm so comfy.

I'm sure it doesn't help that I am crazy tired either. I couldn't get to sleep last night, and I still woke up early today. And I can't go back to sleep now either. Bah.

I'm ready for the end of the semester.

The Medical World

2011-03-23T22:12:00.000-05:00

It seems to me that people on the outside of the fiasco that is the United States' healthcare system think that everyone is working fine. Sure, sometimes people have to pay more for care/treatment, but we have a system that works and doctors who do their job correctly.

But the truth is so far from that. Yes, there are doctors who do a great job, who go above and beyond to help their patients. But the vast majority of them seem to either be in bed with pharmaceutical companies or disinterested in the experiences/problems of their patients.

My doctor is nice enough. And he's succinct, which I really like. But he also is so far removed from what is going on with me and my body often. All I have for pain is 600mg ibuprofen, which half of the time doesn't work - be that because of the intensity of the pain, the way it makes me sick to my stomach, or the tolerance built up after years and years of taking that as a normal dose. He's convinced that narcotic pain relievers are wrong. Or, at least, that I need to get them from a primary care doctor and not from him.

If you're a rheumatologist, you're probably the only doctor that some of your patients see. Insurance payments and co-pays suck too much to pay double for basically the same amount of care.

Also, apparently my insurance won't cover my eye doctor appt from a few weeks ago? And I've never gotten my full list of co-pay due for past visits to my rheumy. How odd.

But I digress. If you're a doctor geared specifically to people in horrible amounts of pain, you should probably be willing to help them out a little more with the relief. Just sayin' the truth.

The system doesn't work - it's broken. Programs don't help those of us who need it the most. And still, we have to listen to people (with more money than at least 80% of the rest of us) talk about the horros of nationalized health care. I don't care how long I have to wait for an appt, as long as I can get one and actually get the help I need.

/end rant/

Under Pressure

2011-03-22T00:04:00.000-05:00

This post is inspired by this post.

It is really hard to be sick all the time - physically, mentally, emotionally. It just plain sucks. I wish there were better words to describe it.

But one of the worst things to deal with is the pressure to feel better, to get better and stay better. Having a support system can be one of the best - and hardest - things to deal with. It's wonderful to have those special people to lean on when you need to. And let's face it, I need to often. But it can also be very hard to handle.

My support system is made up of family, 'adopted' or blood. It is so hard to feel sick all of the time, not just for me but for them. I want to go and do and be a part of the world so much and sometimes I just can't... and often that means the people around me don't either. It can lead to feelings of guilt or even wondering how long the relationship can last/stay good as you stay sick/get sicker.

It's comforting to know that these are all normal feelings for those of us often sick. I was struck in particular by this comment on the post mentioned above, specifically this:

I think it’s important for us to remember that even though we didn’t have the choice to be sick, they have the choice to be here.

And somehow that makes fighting all these obstacles worth it.

M is for Migraine

2011-03-20T13:19:00.000-05:00

That sucks life out of me. Or kinda.

I've been having horrible migraines lately. I think it's wisdom tooth related, but who knows. Nothing helps. My migraine meds only make things worse for about an hour before knocking me out. And I definitely need stronger pain meds than ibuprofen.

BUT!

One of my favorite things to do - especially when I'm in pain - is to play video games. Usually, it's hard for me to focus on reading - especially in pain. And I'm a visual person who definitely enjoys the movements and graphics of the latest games.

I like games where I can really get into the characters. Don't get me wrong, I love Mario games and whatever, but deep games are awesome.

Let me introduce you to my new favorite game, Heavy Rain. It's a choose-your-own-adventure type of dark noir game (the best combination ever). You switch between four main characters trying to put an end to a serial killer before the next victim (one character's son) bites the dust.

I don't want to spoil it (and I'm not done yet!), so check out the link above if you want it to stay a mystery. Otherwise, you can check out the Wiki too.

St Patty's Day From Hell

2011-03-18T09:46:00.000-05:00

Seriously, yesterday/this morning sucked. And no, I wasn't drinking.

I worked last night at the hotel. And while there, had to take 2400mg of ibuprofen, which pretty much had no effect on my pain level and neither did anymore caffeine. My jaw felt broken and nothing I could do was helping. I got home and warmed up my aromatherapy cow and finally fell asleep with that on my face... only to wake up an hour later with the same damn pain.

Warmed the cow again, rinsed my mouth more, and tried to sleep. This time I made it off and on until 5.

Warmed cow did not help anymore. Took migraine meds, which only make things worse for about an hour or so, so sleeping went out the window. At 7, woke up AGAIN, and took some more ibuprofen. Finally, some real sleep for about an hour.

If you're a rheumy, please understand how much more of a dangerous place you put patients in when you don't want to prescribe pain meds that work. I felt sick to my stomach all night because of how much I took, and probably had a mild overdose if I really want to look at my symptoms.

Disability Services

2011-03-16T23:24:00.000-05:00

Well, spring break is here and I've accomplished my biggest goal for the week - navigating the world of campus disability services, and successfully at that.

Yesterday was my initial 'assessment' interview with the McBurney Center on campus. I've never had to get special accommodations for myself before... and come to think of it, I don't think I've ever felt like I really needed to use those kinds of things. Yay spiraling downward in the past year. But I digress.

I didn't know exactly what to expect, and was very nervous about my interview. I knew I was going to get emotional, but kind of did at a random moment, talking about my support system and how wonderfully helpful the boyfriend is... It was really informal though and by the end of our meeting we were already getting official paperwork underway. Today, I went in and finished up the paperwork - and picked up my elevator keys for the building I most often have classes in. Why in the world you have a building where elevators aren't accessible from floors 2-5 without a key is just beyond me.

I also have more flexibility in class attendance now... not that I want to utilize it, but I also don't want to fail classes because of a very real and painful situation either. So there.

In other news, I have a Bucks game to attend on Friday with the boyfriend - pretty much court side seats. That's my big present for us from my tax return. Mmmm Bucks.

I got to spend some time with my family today, and it made me realize how much I miss being able to be silly with my sister. She is such a big help for me, and not having her around all the time just makes me appreciate her more.

Now, if you'll excuse me, I'm gradually sipping some juice in bed. Tomorrow, off to sleep, laundry, and hotel work on spring's great drinking holiday!

Wait, there's more than one arthritis?

2011-03-06T18:49:00.000-06:00

Holy crap, did you know that there are 171 different types of arthritis??? This isn't just limited to things with 'arthritis' in the name - Lyme Disease, Kawasaki Disease, and Spinal Stenosis are just a few of the others.

Often when someone hears that I have arthritis, they get this vision of a 105 year old lady with crooked fingers and can't believe someone so young could have that. That's because they don't know the differences between things like Osteroarthritis and Still's Disease. Let's take a [not-super-close] look!

Osteoarthritis

Caused by wear and tear on a joint. Once the padding in the joint is rubbed away, bone hits bone. This is a relatively common occurrence for athletes or anyone doing repetitive movements (factory workers, etc).
The most common symptoms are pain, limited ROM, tenderness, and morning stiffness.
Steroids and OTC pain medication are the most common forms of treatment, but more effective pain meds and surgery happen often.

Still's Disease

Has no found cause but there are many theories
Symptoms range from a ghost-like rash to swelling of the organs to intense joint pain.
The most common treatments involve a combination of steroids and methotrexate, generally combining them with a third drug. I, for instance, am on Plaquenil in addition to those two.
Surgeries are pretty common, especially for those developed the disease at a younger age. Of course this really all depends on treatment and the strength of the disease.

Now, I'm not downplaying the pain and severity of dealing with osteroarthritis. However, those with more complex forms of arthritis, such as Still's Disease, generally have a lot more problems to watch out for. So why is it that most forms of arthritis don't get as much attention as those that affect the old people (or those who do the same thing over and over again)?

I say it's because there are not enough 'famous' people facing these disease willing to speak out about them. It's always about hiding a condition. Instead, we need people like Kathleen Turner to come forward and embrace their disease, using it as an awareness tool. Until we have that, we won't really get recognized by the rest of the world.

Sinus Infections and Antibiotics

2011-03-05T23:17:00.000-06:00

And prednisone taper... Seriously, I dunno how I'm awake AND at work right now. I'm so ready to just sleep for two weeks. Hence, why I'm eating Zingers at 11:15 at night. Mmmmm, Zingers.

I have some new developments though, like a post to come on different types of arthritis. And a facebook fan page, just in case y'all don't really wanna be my friend. It's okay... I understand. *sniff sniff*

Also, I'm so grateful for the boyfriend cause he takes such good care of me.

Eeeps

2011-02-25T10:05:00.000-06:00

I'm not happy about how I slept last night.

I knew it was going to be a tough night, as I'm starting to get over a sinus infection. But I didn't realize that meant that I would wake up in the wee hours of the morning with a frozen left hand :(

I don't plan on being a dinosaur anytime soon, so that better not happen again. I'm lucky that it finally went back to normal, but I was afraid to go back to sleep after that, so it wasn't super restful... which is great when I have an Arabic quiz today I feel ill prepared for because of being absent a lot because of this infection.

Yay no immune system!

MTX and Protests

2011-02-18T14:52:00.000-06:00

Oh Wisconsin, I love your craziness.

The governor is totally being a killjoy and trying to remove the rights of unions to bargain... Also, he's going to screw up my school, and we aren't standing for it. What he's doing is removing the tuition remission for TAs, which essentially will screw up the school as a large percentage of classes (especially languages) are taught by TAs... who will now not have enough money to attend the school.

But it got me to thinking that protesting is similar to fighting a chronic disease.

As I was standing the the capitol building, shouting and protesting against this attack on our rights, it really hit me. I protest everyday, by taking my medications and by living my life as normally as I can.

We lowered my dose of MTX and I've started to take 2 pills in the morning and two in the PM. This is my first week like that, and I'm hoping it helps my side effects go down. But hey, I think it's really helping so I'm excited about that.

Well, it's either the MTX, the unseasonably wonderful weather, or the smell of protest in the air... :)

PFAM Time!

2011-02-16T08:30:00.002-06:00

Well, I only got two submissions for this edition of the PFAM, but hey it's better than zero!

I love Nessie's blog, Lipstick, Perfume, And Too Many Pills. Her post, Keep Fit And Have Fun, is all about making exercise enjoyable. I'm pretty interested in investigating in her Netflix yoga find!

Carla, from Lupus and Humor (and The Singing Patient!), talks about the struggles she faced in her efforts to become 'normal.' I wish I had the tenacity to follow through like her!

We all understand how difficult it is to stay fit when dealing with pain. Along with the 'normal' excuses for not going, we get to endure crazy amounts of pain and swelling as well. I think the biggest keys to success are to only do what you feel comfortable doing, and to have a workout buddy who understands what you're going through.

I am lucky enough to experience both (on occasion). The boyfriend and I usually go together, when my schedule allows it. Really my biggest problem is to keep my exercise down to what I know I can do. Often I will try to go running instead of just walking... which would be fine if my knees, ankles, and hips weren't my worst joints. And then I end up wiped out the next day. But you live and learn. Hopefully, most of us learn more quickly than our bodies seem to want to do.

Hope you enjoyed this small edition of Patients For A Moment. Check out the PFAM blog for more dates and topics.

MTX, first weekend

2011-02-07T23:06:00.001-06:00

I'm really trying hard to not post until the PFAM is up but it's just not working. Oh well. I need to get out some pent up feelings anyhow.

Stephen Colbert is one of my favorite people in the whole world. He's a wonderful guy, who has seen his share of tough times but still rises above and beyond. Also, he's probably the funniest and smartest person in my life that I actually haven't met :)

This is one of my favorite quotes from him - the real him, and not his Report persona:

"Don't be bitter. Everybody suffers. If you can accept your suffering then you will understand other people better. Be grateful for pain. Love life."

I'm really trying to live my life by that, and I usually do pretty good, but it's tough lately.

I didn't go to class today, and worked a whopping 40 minutes of my 8-hour shift at the hotel. This MTX (I think?) is kicking my ass. I feel like I have the flu kinda? And I don't know what to do about it. The scariest part? Not only am I having like full-on pain between my stomach and my chest, now I'm occasionally (like while walking??) getting ridiculous tingly feelings. Case in point: the boyfriend and I were at the gym yesterday, and all of the sudden my lower leg joints kind of went numb-ish... and then it felt like there was a colony of ants feasting on my legs. I stopped walking and tried to stretch out, but it just didn't help. The biting sensation was (mostly) gone, but my joints were still crap. The night basically ended in me crying, ice pack between my ankles, and my sweet boyfriend rubbing my back and working on cheering me up. He's so good at that for me. Otherwise, you know, I get this cauldron of thoughts stirring around in my head:

I hate being so weak in front of him, especially when he is so strong for me.

I must look like an idiot, crying and talking about my body like it's another person hating me and trying to kill me. I can't even walk on a treadmill without my body freaking out on me.

Is this the MTX and will it go away? Or am I going through the first stages of MS? I don't want to go through my last years in life like my great grandma did. It's been almost eleven years since she died, and I still don't understand why I didn't ask her more about her strength and her amazing perseverance. There isn't a day that goes by that I don't miss her and think about her.

Will I be able to get my PhD? My Master's? Can I keep going to school after this semester? During this semester? Who am I kidding, thinking that I could work a full-time job if I'm not in school with all this going on?

I'm tired of being dizzy. Why do all my medications cause dizziness and stomach upset? Can we not, at our medically-advanced stage, create a friggin' medication that actually works?!?

I'm alright with waiting until my next appt on the 28th (as long as things don't get worse) to talk to the rheumy. But the boyfriend thinks I need to keep a closer eye on that... and he's probably right. He's the logical one :) The chest pain has been happening off and on for a little while now, but I've just been saying it's got to be asthma-related and just blowing it off... which is not the smartest idea ever.

Still's Disease, you are a bitch. But I plan on not beings yours anymore, and I'm turning the tables on you one way or another.

February 16th edition of Patients For A Moment

2011-02-06T14:00:00.001-06:00

I'm reposting this so that it stays at the top of the page!

So I'm hosting the next edition of Patients For A Moment (PFAM). If you don't know what that is, why don't you click here and we'll tell you all about it. Anyhow, I kind of get to choose my own topic and ask everyone to write about it. If you're looking for a good example, check out the most recent post at It's No More In My Head. So, here's my prompt:

Fitness and chronic pain - what'ya gonna do?: Those of us with chronic pain conditions know all too well how bodies need exercise and activity. But what happens when you're in pain? What challenges do you face in staying fit? What ways have you found to work around problems? Or, do you have a fun/interesting/crazy/horrible fitness story?

I'll bet you do!

Soooo, if you're interested in sharing, email me the following at kwhiggitywhiggitywhack@gmail.com:

Your name (as you want it to appear)
Your blog's name
Your post's title
Your post's URL

Oh hey, and try to get your post to me by the 13th, eh? I mean, as long as you get it to me before the 16th, you'll probably wind up in the post but please understand that if you send in a post at 11:59pm on the 15th, it might not end up in the carnival. The post of posts will go up on Wednesday, February 16th. Even if you're not participating, come check it out!

Oh, I almost forgot. I'm going to try to not write again until the PFAM post is up, so that this post will stay at the top of the page. But I have a doctor's appt on Monday, so that might throw things off a bit.

Happy writing!

PS: Yes, I know, my email is ridiculous/awesome/fantastic :)

MTX, day one

2011-02-05T13:32:00.001-06:00

So I took my MTX yesterday - after classes just in case it knocked me out.

I had a pretty good sensitivity to light not too long after taking it. And then I was about ready for bed by 8:30... which is not conducive to my hectic student lifestyle but meh. I think I'm going to ask for Fridays off from work from now on. I might even offer to work the dreaded 2nd shift on Saturdays so that I have more time to rest, but we'll see on that one.

I woke up alright this morning. I've been pretty tired all day though. And now I'm pretty warm too. I hate that.

I have a haircut appt on Thursday afternoon. I'm kind of excited. I'm not sure what I'll get yet, but I have a couple of ideas. I want something shorter, because I never have my hair down since I get so warm like that. I'm tired of my ever present ponytail-bun.

Don't forget about PFAM!

Okay, I tried

2011-02-01T09:32:00.001-06:00

But I couldn't refrain from posting.

So my appt yesterday was short and sweet. I go in, tell Dr. M that I don't think the Plaquenil is really working, and say that maybe we need to play with dosages.

"No, I don't want you on any more steroids. We're gonna put you on methotrexate."

I expected it.

I was composed until I finished up with labs (only two vials - a miracle!) and got back in the car. I cried a fair amount on and off yesterday. I biked ferociously for an hour at the gym, before deciding to run away from things on a treadmill for a while.

I'm scared. I don't know what it'll do for sure. I have this vision of me with hair falling out, so weak and fatigued that I don't want to get up, but with little joint pain. What a great trade off - feeling good enough to do things and be 'normal' except for being so tired you feel like death.

At least I have my new fluffy bed to console me.

It's too cold :(

2011-01-23T08:53:00.000-06:00

I think I am getting annoyed with the length of winter.

I remember being little and spending time with my great-grandma. She had MS and always had cold hands. I feel like her so much this morning. To add to it, I wish I had a great sweater like her with wild cherry cough drops that're more like candy than medicine, curled up in a huge fluffy blanket. She really knew how to live with her chronic pain, and I wish she was here to show me how she did it so well.

Also, I'm kind of getting annoyed with people where I work not doing their job right. I'm starting to feel like this is too much stress for me, because I'm having to clean up after everyone *sigh*

I'm ready for my teaching job now, kthanks.

Hospital Beds

2011-01-22T16:47:00.000-06:00

I love this song by Cold War Kids, and it kind of describes, to me, the relationship between those of us afflicted.

There's nothing to do here

Some just whine and complain

In bed at the hospital

Coming and going

Asleep and awake

In bed at the hospital

Tell me the story

Of how you ended up here

I've heard it all in the hospital

Nurses are fussing

Doctors on tour

Somewhere in India

I've got one friend

Laying across form me

I did not choose him

He did not choose me

We've got no chance of recovery

Sharing hospital

Joy and misery

Put out the fire, boys

Don't stop, don't stop

Put out the fire on us

Put out the fire, boys

Don't stop, don't stop

Put out the fire on us

Bring the buckets by the dozens

Bring your nieces and your cousins

Come put out the fire on us

Vietnam fishing trips

Italian opera

Vietnam fishing trips

Italian opera

I've got one friend

Laying across from me

I did not choose him

He did not choose me

We've got no chance of recovery

Joy and hospital

Joy and misery

The joy and misery

The joy

Misery

Put out the fire, boys

Don't stop, don't stop

Put out the fire on us

Put out the fire, boys

Don't stop, don't stop

Put out the fire on us

Bring the buckets by the dozens

Bring your nieces and your cousins

Put out the fire on us

Too, too fast

2011-01-19T22:34:00.000-06:00

I can't get this vision of me this time next year, in a wheelchair and not being able to do anything that I like to do, out of my head. It's like all my worries about my health and my biggest fears are being mixed in a nickelodeon spinning around in my head. And it won't slow down, it won't stop.

I think all the plaquenil is doing right now is making me sick to my stomach. And the next step is either to play with dosages or pair it with methotrexate. And I really hope it doesn't come to that. That's the one thing I've told myself I will not take. The small possibility that I might get pregnant while on that is too much to risk to me to feel better.

I guess this is just kind of a ranting post. I'm scared and there's really nothing that's going to comfort me. I wish my rheumy appt was sooner. I wish I felt better. I wish that I could shake this feeling that things are going to get worse soon, that I'm going to get sicker as soon as my moving plans in summer happen, that people are going to resent having to help me more, that I'm going to become a burden.

I think I'm just tired and ready for some relief, sleep, wine, a massage, or a nice crying session... which I seem to want to do at work today. And kind of have. *sigh*

I just wish I was normal, more than just about anything right now.

Break is over already???!?!?

2011-01-17T21:15:00.000-06:00

I'm not ready to go back to school. Well, kinda though.

I always struggle with the idea of school. Having been homeschooled for so long when I was little, part of me loves being in a school and being around professors and other like-minded people. Learning is something I love so much, and I wouldn't have it any other way.

But I also know that this means I'll have less time to rest and more time spent working and studying hard. I like being busy, but I've also learned lately that me being busy isn't always the best thing because I don't take enough time to rest and take care of myself usually... Sometimes I just can't.

I have a rheumy appt on the 31st and I'm going to see if he'll fill out paperwork to get me into the disability services at UW. It shouldn't be a problem, I don't think. I also need to see if he knows a good opthamalogist because I don't want to have to go to Milwaukee for my appt in March if I don't have to. I also want to play with dosages a little bit here - I don't think the Plaquenil is doing as much now. Hopefully that works and I don't have to switch meds... though if I do I'd rather it be now. My left knee is so swollen that it's making my pants fit ridiculously.

Tomorrow we have our follow-up fitness thing, and I'm honestly worried about being able to do anything. Hopefully it's more him showing us workouts and assessing our body fat and such. I'm not sure I want to know what any of that is :-p

Oh well, going through crazy things like that not alone for a change is really nice.

Here's to a fun day of syllabi and assessments!

Oh holy crap

2011-01-15T12:16:00.000-06:00

I haven't been able to work out again since the fitness assessment. And I think my body is rebelling.

Also, I found a massage therapist close to work that has a lot of training in how to deal with fibromyalgia, which her mom has. Even though it's not quite the same, I think it'll really help my Still's if I can get in to see her at least once here in the next little while.

I am so ready for school to start again. I ordered the textbooks that were listed for now. I hate how long it takes for profs to put those up.
And I finally get to go get new tires soon, which is so wonderful. I'll be glad to not be slipping and sliding around as much in the snow.

If I don't get to go see the massage lady today, my plan is yoga (as much as I can do right now), shower, and probably bowling. Oh, and I might go see if I can get a netbook tonight because my laptop keeps acting up and it's pretty bulky to take to classes all the time.

Sympathy

2011-01-14T10:49:00.000-06:00

So it's really difficult to have a chronic condition. It makes it so tough to do normal everyday things, let alone workout. But the boyfriend and I joined a gym last week. Along with our memberships, we get free fitness assessments. We went through part one together last night, and it kicked both of our asses.

The thing was, I did everything that my boyfriend had to do - with the exception of like four more steps pushing this half balance ball across the floor. I totally could not finish that. It sucked. And then the trainer made Theron finish it for me. Poor guy.

We were both sore as hell afterwards last night. Theron's hip was killing him. But it was one of the best things I've ever done, and I'll tell you why.

As I was leaving the boyfriend's, he told me he admired me for doing everything he did despite hurting all the time. It was pretty much the nicest thing anyone's ever said to me.

:)

Imma make make make make you sweat

2011-01-09T09:36:00.000-06:00

I enjoy random song references.

The boyfriend and I went and got memberships to Anytime Fitness. We figured it would help us both if we went together and kept each other on track. It's kind of amazing. I have worked out everyday since we got the membership and I feel so good. I've been walking/running and biking mostly, to get in my cardio and work on my leg joints which tend to be my worst.

I also went and bought a yoga mat and have done that just about everyday too. And I finally got back to meditating after not being able to because of stress.

Needless to say, physically I feel better than I have in a long time. I know I shouldn't actually be running but I just love it so much. And since I'm still doing okay, I'm not worried about it :)

But I've had some really nice things going on at work lately too. And in my personal life. It finally feels like everything is on the same page. We'll see if that keeps up once school starts on the 18th. I really hope so. I kind of like this idea of things going right for me.

Unacceptable

2011-01-06T15:33:00.000-06:00

I'm kind of in love with the woman who wrote this. Here are just a few of my favorite spots, but please please please go read this for yourself:

Often, when going through the process of diagnosis for juvenile arthritis… one of the potential outcomes parents get to chew on for awhile is Cancer. Leukemia was one of the diagnoses we were testing for when Caitlin was hospitalized with high spiking fever, swollen joints, white blood cell counts off the charts etc. When cancer was ruled out – we were so very relieved. This is very common and I’ve spoken to so many parents who have been through the same thing. One mother, though, had remarkable courage when she told me that sometimes, she wonders if cancer would not have been better. Before you judge, you should know that her son has one of the worst cases I have ever seen, and as a young adult, has already lived over 15 years in excruciating pain with no sign of relief in the future. He struggles with depression and mustering the will to live…. So please understand where his mother is coming from when she wonders if cancer might not have been easier. Either he would have been cured… or he would no longer be in pain. That is a powerful and courageous admission….and reminds me all the time of how unacceptable arthritis is.

...

It is not acceptable for people to give up their dreams, and their mobility, and their health. We should not tolerate willingly this loss of quality of life… this financial burden, this tidal wave of malady.

...

But what it boils down to for me is something like the serenity prayer….God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.

Mmm Sleep

2011-01-02T22:25:00.000-06:00

Well, the new year is here... and so is more swelling.

I rang in the new year playing Red Dead Redemption in my boyfriend's apartment. On a side note, that game is really fun, but I find that - like the GTA games - it gets to a point where I can't really do big missions anymore. Oh well, the boyfriend isn't too bad at those. Yay teamwork!

We did a really fun thing this year in our new abode of Madison - the US Bank Eve celebration. It's more geared towards kids, but shoot for $5 a person why would an adult pass? Probably because of the lack of alcohol, haha. But it was great. The bank had places set up all over Madison that the one $5 wristband would get you into. We enjoyed some nice ice skating (complete with a nice skate sore for me), petting zoo animals, and a trolley ride through downtown guided by the first mayor! And all in glorious 40 degree weather. It only lasted two days, but I miss it so badly.

Yesterday, we went bowling too. The boyfriend is pretty good at that, but I somehow have the gift of spinning balls without really knowing how. Go figure. I had a margarita, so I'm blaming my low score on that :)

Off and on last night, I slept for about 11 hours or so, ending up sleeping at the boyfriend's an unplanned second night. I kind of feel bad about it, only because I know it is difficult to sleep with me haha. But more seriously, I'm starting to feel more fatigue from my RA and the meds I'm on too. And I'm starting to feel the toll it's taking on me. I just always worry that I'll be too busy dealing with my own physical pain to notice how things are affecting the people closest to me. I'm stuck with pain because of what I have, but the people I care about the most shouldn't have to suffer for that. And that's why I act like I'm always okay. But I'm starting to learn that even my super-ability to do that is starting to have limits.

Sometimes it's hard to tell when how I'm acting is normal or not too. More and more lately I kind of feel zombie-esque. It doesn't seem to matter how much sleep I get or what else I have going on either. It just always feels like I'm waiting on something that's not there. It would be nice to know what it is, and when I'm gonna get it. Seriously.

And I'm still swelling, so I think I might need to up my steroids. I might play around with it myself before my doctor's appointment at the end of the month and see what helps. I should've known that 5mg/day wasn't going to be enough without me being all placebo-effected. Bah.

سنة جديدة سعيدة‎

2010-12-31T11:18:00.000-06:00

Happy new year! (well, soonish)

This has been a rather interesting year for me, with a lot of major events. I think they might be worth a little recap.

Okay, so we started off the year with posts on the horrible effects of RA and Still's Disease. Not maybe the best way to start off the year, but I made up for it by posting about great RA-ers like Sandy Koufax, Jamie Farr, and Renoir. Then, I finally got back on track medically by going to a few doctor's appointments and being told I should be on medicine. My rheumy was nice at first, but quickly started to suck. My arthritis was getting worse too - so bad that I decided it was time to get a disabled parking permit. I don't know what I would've done without that this year.

But! Thankfully, my arthritis behaved pretty well during my college graduation and my wonderful boyfriend's gift of a trip to go visit my extended family where I grew up in Oregon. I really miss being there for many reasons, but I think the weather is a big part of it. He's a pretty awesome person I think, and I'm not sure how I'd get by without all the things he does for me.

I moved, twice, and started two new jobs - one at a hotel and one on campus at the Wisconsin State Historical Society. They're both pretty awesome jobs, and they hardly seem like work... in my head at least. Stupid body. Oh yeah, and I started graduate school! Learning Arabic is pretty tough, but getting an AB in it is awesome. Also, I got a new rheumy and GP.

I began to understand what having Still's Disease does to a relationship as things get worse. I also decided to be a little more open about my disease to everyone, with this blog being a big part of that plan. I blogged about one of my busy days too, even though it wasn't one of the busiest I've had. Oh, and let's not forget that beautiful flare up at the end of October, but I didn't let it screw up my weekend away.

I started taking steroids, first to get rid of that flare and now to control symptoms. And now I'm also taking vitamin D and 600mg ibuprofen. But honestly the ibuprofen I think is making me sick to my stomach everyday. I thought at first it was maybe because I wasn't eating enough, but I've been eating a lot (for me) lately with still the same issues. Bah!

But all in all, I'm a pretty lucky person this year. I mean, I even discovered some things I like about RA...ish. I've been through a lot and the stress level is understandable, but having a break from school is helping, even if I'm working both jobs more.

Happy 2011 everybody! I hope this next year brings better health for all of us.

The Thankful Post

2010-12-24T21:03:00.000-06:00

Okay, so I should've done this back when Thanksgiving happened, but if you remember, I had kind of a lot going on. Bah.

Random things I'm thankful for this year:

Having a job - not just that, but one that I really like and where I really like management and the other workers. I could see myself staying here until I'm done with my PhD even... which takes forever mind you :)
That school's out for almost a month.
Now that classes are over, I feel like I have a few friends, which makes being in Madison a little more bearable.
Lotion, because my fingers keep cracking open :( (also, band-aids)
Netflix, because it's one of the most awesome things invented.
Being able to be on medicine, because I don't even want to think about how hard the last 6 months would've been without it.
My family, who is always supportive of me.
Pain medicine haha
On a related note, alcohol
My sister, who is pretty hilarious and pretty much awesome
Egg Nog, and my annual nog binge (which was this morning btw)
Random guests who give me dessert! (Also, I think I'm in love with flan now)
My boyfriend, who is probably the nicest and sweetest and funniest person I know. Also, he knows when to kick my butt into gear, which is awesome.
Getting to establish a small sort of relationship with my real dad. It's not much now, but there's a lot of time to work on that.
Anti-fatigue mats
Christmas music will be over soon and I get my oldies station back (yeah, shut up, I like oldies)
I've learned how to buy things a little healthier now, and feel better than I have for a while, comparatively speaking.
Humor! Otherwise, I don't think I'd make it.
And you! Whoever you are reading this- whether you're a friend, from my family, or just some random person - you mean something to me.
Also, cheese.

My grades were supposed to be up today I thought, and they're not. I think I'm grateful for that too.

I hope everyone has a safe and happy holiday season!

Thank you, Christmas break!

2010-12-23T07:51:00.000-06:00

I am finally done with finals. It's sad, but at this point as long as I've passed my classes, I don't even care what kind of grades I got. I'll know after Christmas apparently, so we'll see what happens.

As I was writing my final paper Tuesday night, my right hand went from fine to unbelievably swollen in about five minutes. I figured it was just because of me typing a lot lately, and ignored it. I then could literally feel the swelling traveling up my hand, into my wrist, and up into my arm. Needless to say, I ended up taking pain medicine and passing out.

Last night, in celebration of finishing the semester, the boyfriend took me out to the Great Dane, which was really good. I had to take pain medicine before we went, and as soon as it took effect it wore off. I'm starting to think that it might be good to have some sort of stronger medicine than that even. Gah, I really don't want to go to a doctor and ask for narcotics. I really would love being looked at like a junky.

So I'm at work this morning, without really feeling up to it. Good news is that there isn't a lot going on.

Between tonight and tomorrow morning, I get to finish my Christmas shopping and get to wrapping. Hopefully I don't have to spend too long at the store. Also, I'm thinking about going with gift bags this year instead of trying to wrap things. I have a feeling my hands will be thankful.

Mmm Blizzards

2010-12-14T21:20:00.000-06:00

So I didn't stay at the hotel on Friday night, but I DID stay on Saturday. We got a ton of snow, and it took me forever to clear my car off. Thanks to temperatures, it's still not all the way cleared off. Awesome.

It's officially finals week, which means I actually have to do the papers I've been putting off all semester. Crap. Good news is, after tonight, I'm done with hotel work until Sunday, so I've got plenty of time. And I'm going to talk to my advisor tomorrow about the paper for her class, because I feel lost.

I am so ready for exactly one week from now. My final final paper is due next Tuesday by 5pm, and I can start to focus for realz on Christmasy things. Oh, and random reading. I'm kind of excited about that.

For now, I'm going to try to make more headway on that paper, and hopefully get ready for my last day of classes tomorrow.

I'm Crazy

2010-12-10T20:59:00.000-06:00

Sometimes, literally, I think.

I volunteered for an extra shift at work tonight, 3-11:30. And the guy coming after me is always late. Oh, did I mention I work tomorrow 7-3? And that we have a huge snowstorm coming soon? Laaaaammmmeee.

I'm trying to figure out if I should sleep at the hotel or go home. I'm leaning toward the former, but I just don't know. The boyfriend brought up the issue of clean clothes. I feel like I need emergency underclothes in my car at all times.

If I do stay here tonight (aka, yeah I probably will), I am thinking I will stay in one of the handicapped-friendly rooms. The shower has a low bath lip (edge? is there a term for this?), and there is a bath chair if I need it... which might be interesting to try.

Hopefully tomorrow afternoon it'll be easy to get home, but who knows with 6-12" on the way... Blech!

I love weekends (sometimes)

2010-12-05T10:58:00.000-06:00

I had Saturday off this weekend, because the boyfriend and I were supposed to go to a RISE conference on RA in Chicago. We had it planned - wake up early and drive down the morning of. But weather had other plans in store, so we decided that wasn't the best idea after all.

Instead, I got to watch the Oregon Ducks clinch their spot in the BCS national championship, and had a nice quiet day. I kept falling asleep, but I think that has to do with having to take the new pain meds. I seem to get pretty tired when I take them.

I think I might need to take another one. I've been standing a lot at work so far today, and my ankles are starting to plot my demise.

New rheumy, new meds

2010-12-01T16:32:00.000-06:00

Well, my appointment with my new rheumy yesterday went well. He's a quick in-and-out kind of guy, and basically will do what I think I need, which is awesome. He put me back on prednisone, 5mg a day, and gave me 600mg ibuprofen that I'm allowed to take three times a day. But I'm pretty sure that I don't need to take it that much. I'm just gonna take it as needed. I also got the full run of lab work done, as well as a ton of x-rays.

The steroids are starting to kick in and help with the swelling, so hopefully that'll continue to help. We'll look at tapering in a few months.

I was so exhausted by the end of the day. I didn't go to my class directly after the doctor's appt, but instead worked on a paper until a meeting at work, and then had to finish the paper. So busy!

One week off steroids

2010-11-26T08:11:00.000-06:00

Well, my swelling/pain is down a little bit. My back is mostly better now. My hands are swollen still, but they pretty much always have been. My middle fingers tend to be the worst - my right one especially, but that's because I got beat up in kindergarten and hurt it pretty good. Ugh.

It was also my boyfriend's mom's birthday yesterday, so I got to make Thanksgiving dinner. My boyfriend came up with a helpful and arthritis-friendly idea - to make Hungry-Man turkey dinners! His aunt usually does that for Thanksgiving. It actually was pretty good. I spent a lot of time cleaning and getting things ready, but the cleanup was pretty quick (I love having a dishwasher for this reason, and I will not be without one again!).

We went bowling yesterday too, which was pretty fun. I kind of temporarily screwed up my wrist. I picked a ball that was perfect for me at the beginning, but eventually my fingers got more and more swollen, so I got to deal with a suction-cup effect. But it was pretty fun, and I even beat everyone else one game! Without bumpers, I might add.

Now I have a weekend full of work and research. Yay huge papers!

Second day off steroids

2010-11-20T10:07:00.000-06:00

And it sucks. My left hand is shuay-shuay (Arabic for meh) but my right hand, holy cow. I can't straighten my middle finger. It's so swollen that bending it is getting to be pretty fun also. My back seems like it's hurting more than before. Oh, and my left knee has joined in the chorus of pain. Ugh.

The rheumy I'm going to see on the 30th doesn't have great reviews online. I hope he'll listen to me about needing to stay on the steroids for a bit, or finding a new medicine. The plaquenil just isn't handling the swelling right. Also, I need real pain medicine. I'm tired of taking too many Aleve.

Back-ack-ack

2010-11-18T16:48:00.001-06:00

My back started to hurt last week. I just thought it had to do with the fact that I checked out a crap load of books from the library. But over the weekend, while at work, my back began to hurt even more. It has gotten to the point in the last couple of days where I'm basically lying down in bed, trying to find a comfy position, and not doing really much of anything else for hours... like last night. It's really starting to be unbearable, though I slept a little better last night... but that was probably because of my half glass of wine, haha.

I've also been REALLY hungry lately. We're not talking about the run-of-the-mill I-haven't-been-eating-enough thing. Oh no. I'm getting hungry sometime between 2-3 hours after I eat - even if I eat a ton.

I'm starting to wonder if these have anything to do with the tapering of the prednisone. Today was actually my last day taking it. I really felt so much better taking 5mg every morning. As soon as I dropped the dose, swelling came back... and that's when my back started hurting. Hmm.

I'm not excited to see the full amount of swelling come back over the weekend. I just hope things stay mild, but I doubt I'll be that lucky. Blech.

Oh, and I've been having weird dreams for a while now pretty much nightly where I wake up in the hospital - without knowing what happened, of course - and the people closest to me are all there and super worried. No one ever says what happened. All I can hear is the beeping of the medical equipment, and my vision of everyone is really soft. It's almost like waking up to my alarm clock and that noise being so deafening that it drowns out all others... and being so tired still that everything is blurry. I just kind of fall back asleep and that's the end of the dream.

Is this me dying? Or my subconscious trying to handle how worried everyone gets about me, and my illness? It's just too cryptic to know.

Oh medicines

2010-11-14T08:12:00.000-06:00

So I feel a little less Hulk, but a little more like I can't focus as well. I'm not sure if it's just me, or if I am not handling the prednisone well. I know that it can cause mood swings, but lowered attention span? Maybe.

The prednisone really has helped get my swelling down. I guess I never realized how swollen my whole body was all the time until I started taking it. My fingers look like my grandma's (she has really thin hands). Oh, and all of my clothes are either fitting better or falling off me... which is both great and slightly annoying, haha. It's helped lessen my asthma and psoriasis too, which is so great because both were really getting out of control.

I have a rheumy appointment on the 30th. I'm thinking of asking to stay on the steroids, or try another kind maybe. Everything about it is so good for me. Again, I just need to figure out the focusing thing, which I'm sure he can help with. I'm excited for my appointment, because it's a new rheumy at a new place. I think I tend to communicate better with men too, so that'll help. I usually get along better with guys, and there isn't as much of an awkward judging feeling as there is with women.

Last night, my boyfriend and I went to a basketball game in Milwaukee. I was kind of pensive about the whole thing, because I knew I was going to need to take more plaquenil in the middle of the game. But it all worked out great, because I got to be the go-and-get-food-and-soda person. It worked out better than I thought it would, and we had seats with a good amount of leg space, which was helpful for me and the tall guy with me.

I'm looking forward to hopefully more time to get homework done, and to enjoy the mild fall/winter that it looks like we'll have up here. Damn global warming for ruining the earth, but less cold also means less arthritis symptoms for me usually... Oh, the conflict!

Blah

2010-11-10T14:03:00.000-06:00

I'm tired of being on steroids. I've been really emotional and melancholy lately, and I don't think the prednisone is helping that much anymore. I keep being really existential, and I think I'm having a quarter life crisis.

Also, I just got yelled at in the bathroom for using the handicapped stall by someone in a wheelchair. I was very nice and tried to explain that I was sorry but that my RA makes it hard sometimes to use the other stalls because they're so much lower. She just rolled her eyes and nodded.

I don't even know how to feel about that. I was in the stall for a while cause I was crying, which she must've heard. Is it wrong to be frustrated that she didn't seem to understand, or am I just being a baby about my condition lately?

Kirsten Smash!

2010-11-05T22:28:00.001-05:00

Okay, so it was my first day taking steroids.

I have no attention span. I keep getting hella warm/sweating, so that's sexy. Oh, and I have like way too much energy and feel like the Hulk. I cleaned my room and organized things - that should've been a two day job... or at least longer than two hours.

I felt like running, but knew that was a horrible idea.

And now my stomach hates me. Sprite does not help (which might be okay anyway cause it belongs to my roommate haha). The doctor wants me to take half of what she initially said, dosage-wise, so maybe that will help.

Oh! Also! I bought mittens today. They are much warmer than my cruddy gloves. Yay warm hands!

Holy Crap

2010-11-04T22:27:00.001-05:00

I have had the most ridiculous two weeks ever. My rash last week was absolutely horrible, as was my swelling (oh, and here are pics).

I'm supposed to be starting Prednisone to take care of the swelling. It's not really an issue (comparatively) right now, but I'll do it. I just don't want chipmunk face :(

My boyfriend and I were out of town for the weekend, and any pictures of me look horrible. My face is swollen and gross. But I took some fun pictures nonetheless.

Oh, also, because of all that gross swollen body and rash and whatnot in the last two weeks, I'm an emotional wreck (I think).

I am ready to just be done with all this.

Seriously.

Oh my god, really???

2010-10-27T10:47:00.000-05:00

What the fuck?

I've had a nasty cold. And now, the arthritis is by far the worst it's been since I was 6 or 7. I've had rash literally all over my body since Sunday night, with no way to get relief. And now my hands are so swollen that it hurt to grab my backpack or steering wheel even. Oh, and the cough drops I was using had Splenda in it, so I've also had fun allergies to that.

Seriously, why? I don't understand it at all. What did I do differently? What CAN I do differently?

UGH.

Yuck

2010-10-20T10:55:00.000-05:00

I am sick. I don't know exactly with what, but I'm coughing up crap. Oh, and this morning, it was pink/red in color.

Aside from coughing and being entirely way too warm for how cold it is outside, I feel alright. I'm not extra fatigued right now, which is nice.

I go to the doctor today at 1pm. I think it's just bronchitis, but I want to make sure that there is not anything else going on, since I recently started the Plaquenil.

Emotional side effects?

2010-10-14T16:16:00.000-05:00

I had a pretty good day today. I finally woke up early enough to eat breakfast at home before heading off to school. I had a midterm that I think I did well on too. The odd part of my day comes later.

I get home and I'm checking out facebook on my iPod while putting away dishes. I come across a video about a sick little girl who has JRA. She's in a Remicade-induced remission, and says that if she stops taking her medicine the boo-boos will come back...

I broke down.

I couldn't stop crying and I can't figure out why. Was it because it felt amazing to finally have an affirmation of what being a sick child is like? Or was it related to not wanting to see other children in pain like that? Or even more than that, my own children?

Maybe it is for more selfish reasons. I've read a couple of things lately about life expectancy... Again. Why I keep on looking at these things, I have no clue. All I know is that being sick like this tends to affect how we live our lives - we can either embrace the time we have or begin to dwell on what we don't and the bad things to come. I try to be a part of the former group but that doesn't always work.