Friday, January 27, 2012

Makin' Babies

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

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!

Tuesday, January 17, 2012

Gettin' Jiggy With it

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?

Tuesday, January 10, 2012

Best Weekend Ever

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.

Monday, January 9, 2012

Pain Scales

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/

Thursday, January 5, 2012

The Medieval Pain Scales

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.

Wednesday, January 4, 2012

I Made This!

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.