Category: chronic sex

The Boyfriend Speaks!

Posted on by Grayson

I always talk about how wonderful my boyfriend is and how very lucky I am to have him in my life. It’s true. I asked some of y’all to send me some questions via my facebook page and some wiseguy wanted me to ask him the first three questions. Apparently he didn’t prepare amazing answers to them. But I’ve gotten a lot of good ideas from you guys, and I had a lot of questions I wanted to ask him too. I get really shy and emotional around some things though, so they’re never things I would have normally asked.

But like I had to remind him during some of his answers, this is a safe space!

I hope you guys enjoy reading my interview with my honey as much as I enjoyed asking him some of these questions.

 
K: I am awesome. Thoughts?
T: I agree! There is a lot about you that I admire.
 
K: Ok, so then if I’m so awesome, where is my spa day? Is it because you don’t make more money? Does that bother you?
T: Wait, what?
 
K: Why don’t you make more money so I can have a spa day?
T: Cause I’m lazy.
 
K: Ok, fine. I’ll ask normal questions. Pssssh.
 
I know it’s been a long time, but can you remember your initial reaction when I told you about my illness?
T: You brought it up really early on.
 
K: Yeah, it might have even been on our first date.
T: Maybe. You were pretty open about having it. I kind of just thought of it as another fact you learn about someone else. It was interesting, but I don’t recall any weird reaction. I just thought it was one of those things.
 
K: We used to be a lot more physically active in the earlier years of our relationship. Are there any things that we don’t do as much that you miss?
T: it seems more like we did those things because it beat hanging out in a dorm room and we didn’t have to work 40 hours a week. A few weeks ago, we went hiking and today we walked State Street, so I think we’re plenty active.
 
K: When we first began dating, you wanted to learn more about my illness but I was really afraid to share some of it with you. How difficult was it when I didn’t share?
T: It doesn’t really stand out in my mind. It probably bugged me a little bit, but more from a standpoint of I didn’t know what things were okay to do sometimes. I figured you would share more when you were ready.
 
K: Part of how I was finally able to share my illness with you was through my blog, which you encouraged me to do. Does it still help today with communication on how I am feeling?
T: I think you communicate more directly with me now than in the past. I think you should blog more often though.
 
K: I sometimes share a lot of information on our personal lives on here. Does it ever bother you?
T: No. Like I said I think you should blog more. You share personal stuff, but it’s pretty nonspecific. If someone really wanted to, they could easily figure out who I was. But I don’t think that’s a big deal.
 
K: We have really begun to do a lot in the past year with the Arthritis Foundation and other organizations, like IAAM, to raise awareness about the many different types of arthritis. Do you feel more involved with my illness because of it?
T: It’s fun to do the walks and do fundraising things. I like feeling like I’m helping. I mean, I wonder sometimes how much it helps but I like feeling like I do something. I like that you are so involved with organizations and WAAD. I think it would be really neat if you could turn it into a career… You know, if you wanted to.
 
K: How do you think the dynamics of our relationship have changed as my illness has progressed?
T: I dunno how much things have changed. I sometimes wish we did more, even cleaning and such around the house. But then I don’t do it either. Sometimes I forget too, because of our schedules, that you work 8 hours a day. I think that if you weren’t sick, you’d get frustrated with me not cleaning and such as much too.
 
K: What are the three things you hate the most about my illness?
T: Hmm. Sometimes it takes a while to get going on days. Like Saturdays [our shared day off], I want to go do things sometimes more quickly than we can. I don’t like that it makes you stiff and that you hurt all the time. I wish that I could fix that. I dunno, it all just comes down to I wish that you weren’t sick and didn’t hurt. I wish that you could be like me and lay around out of laziness and not because you’re being forced to because of your illness.
 
K: What is it like for you emotionally when I’m having a string of bad days or a bad flare up?

T: Sometimes it’s vaguely annoying because it seems like my sad days seem to coincide with your bad days. Sometimes it feels difficult because I want to be able to be whiny and have my own bad days, and I feel bad saying it because it is so, so much for you… but sometimes when you have bad days, you get really good about sharing things and I feel like it’s so much going on that it gets annoying. I like that you share though. I feel like a jerk saying that. Don’t be mad at me.

This interview just got real, yo’

 
K: Do you worry about little things hurting me? Are there ever times when you are afraid to do something with me because you’re worried it will hurt?
T: I’m always conscious when we are walking to walk slower, because I walk really fast [he does!] and I know that walking faster like that probably hurts you. There are other times where I want to go do things, like go hiking, and I mention it but then I realize that it’s probably not the best idea that day.
 
K: I could probably be more direct about things like that too though. When you say hiking would be fun and I say maybe, I should be saying more directly that it’s probably not a good idea that day.
T: Maybe 😉
 
K: You are always so, so good at helping me when I’m not doing well. Do you ever get tired of it?
T: Yeah. Some days it feels like I have to clean up after you, but then I realize that you’re probably not feeling well. I generally like helping. If you are feeling crummy and needed me to get something, I would do it but you never do that. I feel like you should be more open about that.
 
K: Do my limitations ever frustrate you?
T: Sometimes, like if we go hiking or something. But I always overestimate my own physical ability too. I wish we could do things more, but you don’t have too many limitations.
 
K: What do you think are the most difficult aspects for a spouse or loved one of someone with RA to understand and deal with?
T: I think it’s just tough to realize what being in pain all the time means. I don’t have any concept, and we’ve been together for four and a half years. And just knowing that you can’t do everything. Yeah, it would be fun to play tennis and things like that, but it’s not worth you being in pain. There are other fun things we can do though. I think it can be a good thing. You can find other fun common interest things to do… like seeing giraffes! Or morning sex on the weekends.
That might fall into the too much personal information category. Oh well.
 
K: Do you have any advice for fellow couples dealing with autoimmune arthritis?
T: I would advise the person with the illness to just be open. If the person really wants to be with you, they want to know that stuff anyway. If they don’t, then they’re not worth being with anyway. I guess that advice doesn’t really apply to people already together where one develops an illness.
I would advise the significant other to be open and understanding – realize that any sacrifices you have to make are small compared to actually being sick. Your sick loved one doesn’t want to be sick and limited. Just be nice and do the things you’re supposed to do, whether that person is sick or not. I know that’s a tall order for some people though.
__
I’m really glad that I was able to interview him, because I think it really helps me understand the things that he goes through more too. I think sometimes I make myself feel bad about being sick and bad that he sometimes has to do more, and I probably do it more often than I need to. And we all need to have our days to whine. I’ll still share what is going on with me, but maybe I’ll tone it down once in a while so he can have a whiny day 🙂
I think it would be a really cool project for all of you coupled people to interview each other with some of these questions. It can be sometimes surprising what you find, and it might just help you guys grow closer.

Gettin’ Jiggy With it

Posted on by Grayson

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?

Let’s talk about sex, baby… and RA

Posted on by Grayson

So I was just reading a study on the effects of RA on sexual intimacy in long-term relationships/marriages. It’s interesting that only a minority claim that their RA affects their intimacy with their partner, as I would have expected that to be a larger amount (note: the study did say “large minority”).

But before the study got down to the vertical tango, it mentioned some of the responses that those participating in the study gave about their general relationship health/perception. It’s interesting to note how many of them feel as though they are bringing their healthy partner down. There were many comments along the lines of: “feel guilty about not being able to pull my weight, etc” or “he always has to look after me or consider my ability to do certain things… strengthened our relationship.”

It really seems interesting to me how many people believe that RA strengthened their relationship. This study seems to have been focused, however, on people who were already married/together when the diagnosis of RA came. I would like to see more research done on girls like myself, who have had RA for a big part of their lives or, at least, before they met their current partner. It doesn’t even have to be focused on only the sexual nature of the relationship. I want to see how other younger people are dealing with the problems and insecurities created by RA, specifically pertaining to relationships.

As for myself, I believe that my RA has strengthened my relationship with my boyfriend. I believe that, as I have shared more and more about how RA affects me than others may know, it has created a better bond between the two of us. I do worry a lot that he does have to do more in our relationship, and I often feel guilty, like I don’t pull my weight – financially, physically, emotionally. He has to be there more for me than the average relationship might entail. The biggest problems we tend to have seem to be on my side – I feel insecure and in a way inferior and instead of sharing that, I might lash out or become more needy, or more reserved. I tend to hide when I’m hurting or when things are bothering me, and I need to be more forthcoming with that kind of information. Even though I know that, I still find it difficult to do. There are even times – very seldom – when I get angry/frustrated that my boyfriend is the normal one. I don’t even know why really, because that’s just silly.

It does sometimes worry me that, statistically speaking, those of us with chronic conditions have a higher divorce rate. But I chose to believe that only really applies to the people who develop their disease during the relationship.

Partners Of RA-ers And My New Pledge

Posted on by Grayson

So one of the things that get neglected a lot when it comes to RA is how those around the person afflicted handle things. It often skips the minds of those afflicted even, as we tend to get wrapped up in our own little worlds.

A new study shows that partners of those afflicted by RA show that they are as emotionally distraught as the sickly person:

Analysing the transcripts of in-depth interviews, researchers reported that all partners of RA patients reported common issues, grouped into the following areas:

Emotions: Partners commonly expressed feelings of immense sadness for a perceived loss of the future, sadness for their experiences of their spouse, but also for themselves.

Adaptation: Several of the partners interviewed hoped for a “cure” for RA with one saying “medicine can do anything nowadays, yes it’s a problem but they’ll give her a tablet and it will go away.” Over time however, the interviews showed that partners came to terms with the permanency of the condition.

Coping Strategies: Some partners reported experiencing feelings of denial, helplessness, and concealment of both the condition and its impact on their relationship.

Support and Information: Whilst all partners interviewed were reluctant to attend patient support groups, they acknowledged their importance, with one participant stating “I think it would be really helpful to people who are newly diagnosed but I would have to have my arm twisted to go there”.

I will be the first person to admit that I don’t think about the impact that my condition has on anyone around me. A lot of the time, I’m trying hard not to show that I’m hurting, but that generally is because I don’t want someone worrying about something that can’t be fixed. I have come to terms with the fact that my life will always involve the dreaded Arthur, my nickname for my RA.
But I still never think about the emotional toll that my condition might take on the people around me. I feel bad about not being able to just go and do certain things. I’m pretty blessed to have the support system that I have, both from family and close friends.
As for my boyfriend, I usually tend to not tell him about things that are going on related to Arthur. It’s almost as if I’m cheating on my boyfriend with Arthur, or vice-versa. I try to not let them impact each other. But, like all cheaters, I end up alienating one or both of them.
Arthur seems determined to cause me as much pain as possible, though I’m determined not to let him win. It is really like being trapped in an abusive relationship, only I have no choice on whether or not I can leave. Theron, on the other hand, is getting frustrated at watching Arthur’s effects on me and not being able to do anything about it. And since I don’t talk to him about Arthur all that much, I’m sure that makes it all the more frustrating.
I’m planning on looking into medications more, beginning by compiling a list of medications I can actually take (because of allergies) and their side effects. I’m still very cautious about medications, because even taking OTC meds makes me feel sick to my stomach. I’d rather stick to more natural methods, but I know that won’t slow the progression of the disease at all.
I’m also pledging to take a large step out of my comfort zone. Both on here and more importantly in my private life, I’m going to be even more open about the problems I face with Arthur. I’m going to talk about my problems more in-depth, which won’t be pretty. If this all helps to make my life and the lives of those around me feel less like we’re involved in an Eminem/Rihanna song, then it’s worth everything to me.
In a slightly related note, I started running again the other day. I had a lot of pent-up energy and running was always my favorite exercise in high school. I worry a little bit about falling back into my old habits and not eating very much while exercising a lot. Since I started running again, my metabolism has gotten a huge boost and I’m actually eating more than normal. I plan on running every two or three days now, no matter what. It’s time to show this Arthur who the boss is.

Chronic Pain and You

Posted on by Grayson
So, I’m finally free from the hardcore arthritis pain that I was experiencing. After my last post, I ended up getting a hugely swollen upper lip while my boyfriend and I were shopping in Madison. Talk about a mood killer.
Sorry about the crappy quality. Taking pictures in a Red Robin with the camera phone is a little awkward.
Speaking of boyfriends… Could your chronic pain condition be affecting your relationships? That is, of course, a trick question. The majority of people do have a problem, at least from time to time, feeling supported or knowing how to handle pain together. Sara Nash, of The Single Gal’s Guide to Rheumatoid Arthritis, discusses the dangers of dating with RA.
There is also the question of the role of diet in chronic pain conditions. Want to know more? Just click here. I can tell you though that the only rule I follow is the one on aspartame, but that could just be because I’m allergic to it. I do try to stay away from a lot of additives and, when it’s plausible, I do try to eat more organic foods.