Kids get arthritis too. They even have it when they are at Disneyland, the happiest place on earth. But these kids didn't let their arthritis stop them. These kids are awesome.
Friday, July 26, 2013
Sunday, July 21, 2013
July Articles on Answers.com
- About Arthritis
- Dealing With Pain
- Diet
- Relationships
- Resources
- Product Reviews
Sunday, July 14, 2013
OZL's First Year
Life with RA can certainly be a struggle. But, overall, I would say that my life is happy.
I will admit that taking care of a one-year-old while dealing with RA
symptoms can be seriously exhausting (and overwhelming sometimes) but
my son brings so much happiness to my life that I really wouldn't have it any other way.
Music credit: You've Got the Love - Florence + the Machine
Tuesday, July 2, 2013
Love & Sex on BlogHer
I am obviously not thrilled about the circumstances that led to my recent posts about my non-existent sex life. However, I was pretty excited to get an email this afternoon letting me know that BlogHer had decided to publish this post on their Love & Sex page and feature it on their homepage today. It
just seems like more confirmation that "sex and arthritis" (or even
"sex and chronic illness") is a topic that resonates with people, but
really doesn't get enough coverage. In addition to interest from
BlogHer, I've also gotten a great response from my readers, both in
public comments and in private emails to me. And while it really wasn't
easy to put my intimate life out there on the interwebs, I'm so very
glad that I did. I know now that I'm not the only one out there dealing
with this issue.
And while I feel very supported knowing that I am not alone, all this interest in
my small contribution to the discussion also makes me feel extremely
frustrated that there isn't more positive, uplifting, and useful advice
out there for us. This is a very draining problem to have and one that
is very complicated to overcome - why isn't it easier to find resources to help?
Although I am obviously
not an expert on the subject (seeing as I am still in the middle of
figuring it out myself) I have been doing a lot of research on the
issue. I'm working on getting my findings out there to try to fill the
massive void of information and support. I actually published three
articles about sex on Answers.com in the month of June (Arthritis & Intimacy; How To Talk To Your Doctor About Sex; and Talking To Your Partner About Sex) and I have several more on the topic planned for July.
It isn't a lot, but it is a start. And that's something, isn't it?
Monday, July 1, 2013
Brace Yourselves
Brace yourselves, people. I'm about to get extremely personal here.
Back when I was breastfeeding, I discovered something curious about my body: it turns out my left boob is better than my right boob. Apparently it is not uncommon to have one boob that is a better milk producer or one side where nursing is a bit easier. But, in my case, my left boob wasn't just better, my right boob was actually pretty horrible. Not only did I produce less milk on the right side, but latching was always a bit more difficult on that side, and for weeks my right nipple was cracked and extremely painful. When it started bleeding (and blood was getting into my baby's mouth) I sought help.
First I went to see my ob/gyn. I wanted to make sure my nipple didn't have some kind of horrible infection. When she confirmed that everything was (at least theoretically) fine, I asked for advice on how to make nursing less painful. Keep the nipple dry, she told me, and never nurse from that side first. She also recommended that I make an appointment with the lactation consultant. But I was extremely frustrated when, upon visiting the lactation consultant, she gave me the exact opposite advice. Make sure the nipple is always moist and always nurse from that side first. Umm....what? The "experts" had given me completely opposing instructions. When I first heard that conflicting advice I had no idea who to believe or what I was supposed to do to fix the problem.
Which, in case that first story wasn't quite personal enough for you, brings me to my current point: the confusion I felt about what to do about my stupid right boob is almost exactly the way I feel about my sex life right now.
The primary problem with my sex life is that I have basically zero interest in sex of any kind. APL and I face all the hurdles that other parents of young children do: we have very little time alone and we are exhausted most of the time. But, on top of that, I am also dealing with extra fatigue from RA and joints that hurt. To make matters worse I feel overweight and unattractive, basically as un-sexy as I've ever felt in my life. And I am continually frustrated by my inability to do much about how I feel about my body, seeing as I'm far too achy and fatigued to do much in the way of exercise (other than being OZL's primary caregiver, which is a kind of exercise in and of itself). Depressingly I've even had to resort to taking some prednisone just to keep going, which feels like several steps in the opposite direction as far as my body image is concerned. Meanwhile more and more time has passed since the last time we were (successfully and enjoyably) intimate, and the hurdles we have to overcome to fix the situation just seem to keep growing.
My options for fixing this problem seem very much like the polar opposite instructions I was given while nursing. On the one hand, we should probably just do it already (no pun intended, however hilarious). I should really stop letting time pass and turning our problem into a bigger and bigger mountain we have to overcome. Who cares if I don't really feel like doing it? Can't I just do it for APL's sake and maybe "fake it 'till you make it" will actually lead to me enjoying myself?
But, on the other hand, why should I force myself to do something that I really have no interest in right now? Especially if it supposed to be something pleasurable and I am not getting any pleasure from it and, in fact, may even be in more pain because of it. Maybe I should just wait until I feel like I really want to, so I will actually be able to enjoy it? Considering all the hurdles I am facing maybe it is reasonable to take some time to try to get myself to a better place first?
But, then again, what if I never feel like it again? Won't it only become a bigger and bigger deal as more and more time passes? Don't I need to do something about it now, for the sake of my marriage? Maybe I should just go for it? And around and around I go again.
But, then again, what if I never feel like it again? Won't it only become a bigger and bigger deal as more and more time passes? Don't I need to do something about it now, for the sake of my marriage? Maybe I should just go for it? And around and around I go again.
Here's the thing: although I was supremely annoyed to be given completely opposite advice from "the experts" about my nursing situation, in the end I took their conflicting advice as evidence that there was no right answer and I that I should just do whatever I felt was right. In that situation I simply trusted my instincts and was able to come up with a solution that worked for me - and my solution made nursing extremely successful (until I ended up having to stop so I could go back on my meds, of course).
But, for some reason, the sex problem isn't like that. I can't seem to trust my instincts because I don't have the foggiest idea what my instincts are telling me to do. I go back and forth over and over and over again. I have no idea what the right choice is to improve our situation, and even when I tell myself "just pick one already!" I can't seem to stick with it because it never feels like I'm heading towards improvement.
Honestly? I'm all out of ideas. The nursing experience (as well as hundreds of others I have had while dealing with my chronic illness) has made me wary of what "the experts" have to say about matters that are, in the end, extremely personal to me. But I don't know. Maybe it's time to get some outside help? Because I just keep going in circles on my own.
Thursday, June 27, 2013
June Articles on Answers.com
- Options for Surgery
- Surgeries For Arthritis Pain
- Other Surgeries For Arthritis Pain
- Total Joint Replacement
- Joint Fusion
- Arthroscopy
- Osteotomy
- Relationships
- Product Reviews
Tuesday, June 25, 2013
Satan's Tic Tacs
We just spent two weeks traveling, followed by two weeks moving into our new house. And let's just say that things have been a bit rough for me lately. So I finally gave in and called my rheumatologist for a short course of the drug I love to hate: prednisone (sigh).
But I was at least highly amused to see Rheumatoid Arthritis Guy post this picture on Facebook the other day. Satan's Tic Tacs indeed!! Thanks for the laugh!!
Monday, June 24, 2013
That Thing No One Talks About
It really isn't rare to hear the parents of young children talking or joking about the toll parenthood takes on their sex lives. It's a well known fact that while making babies may be intimate, having babies makes intimacy difficult. Parents of young children have no time. They have no energy. They didn't get enough sleep last night. There's spitup on the sheets. They can't remember the last time they shaved. So their sex life inevitably suffers.
It seems to me that everyone is pretty understanding and supportive about this issue. A group of parents who are friends might even talk and joke about the issue, even if there are both moms and dads in the group. And get a group of moms alone together (preferably with drinks and without children) and they will discuss the issue in detail.
But while arthritis can have a huge impact on a person's sex life, it is actually relatively rare among the arthritis community to hear people talking about it. You don't see it much on blogs or on message boards. There really aren't that many useful or uplifting resources dedicated to the subject. And even in this blog's 456 posts of over-sharing during the last five years, where I've talked about everything from my own emotional breakdowns to infections in my boob, I've only written four posts that even mentioned the issue of sex. And those were all in relation to trying to get pregnant. But, of course, those were obviously not the only times that RA has played a role our sex life.
I wonder why nobody talks about it? I wonder why haven't I felt comfortable talking about it?
Maybe it's because the toll arthritis takes on your sex life is so much more depressing than the toll having a baby takes. Arthritis (and even treatments for arthritis) can mess with your body image and make you feel not so great about yourself. Yes, you gain weight when you get pregnant and there can be body image issues, but after the baby is born you can try to fix those issues. When you gain weight from being pregnant and being on prednisone but you can't lose the weight because you can't exercise because of nasty RA flares, and your legs are covered in bruises and your hair is falling out and all your joints hurt, it can be really, really hard to feel sexy. Or even be remotely interested in trying to feel that way.
Or maybe it's because the hurdles arthritis puts on your sex life are more difficult to overcome. You can put the kids to bed early. You can hire a babysitter. You can have a quickie during a nap. But if your hip feels like there's a knife in it, or your fatigue makes it difficult even to walk, there's not a whole lot you can do to make sex seem more appealing.
Or maybe no one talks or jokes about arthritis and sex because the toll is permanent. Kids will eventually grow up, but the strain of arthritis on your sex life is forever. And it will probably only get worse.
I now have a young child and arthritis. And this combination has made our current sex life basically non-existent. And I feel like it is all my fault. I feel inadequate. Guilty. Miserable about my body. Less sexy than ever. And I don't really have any solutions or words of wisdom at this point. I just decided that I wanted to share. I'm not trying to wallow or garner sympathy. I fully intend to find a way to move forward, feel better about myself, and improve my relationship and revive our sex life.
But in the meantime I just wanted to put it out there: if arthritis has ever made you feel the way I am feeling right now, you are not alone.
Monday, June 17, 2013
5th Year With RA
It has now been five years since I was first diagnosed with RA.
When my RA anniversary rolled around last year, my baby boy was only a few weeks old and APL and I were still struggling to adapt to parenthood, as all new parents do. I got a few weeks of post-pregnancy remission, but then my RA symptoms came roaring back when OZL was about seven weeks old. After three months of breastfeeding I finally reached a point where my RA was so bad I was having trouble caring for OZL on my own. It was an emotionally difficult decision for me, but I eventually switched OZL to formula so I could go back on my Enbrel and get my RA under control. Honestly I have to say that I do not regret this decision one bit. I'm proud of what we were able to accomplish: breastfeeding exclusively for three months plus frozen milk a couple times a day for another two months. But it is also absolutely true what everyone told me: motherhood is so much more. And now I can be a part of all of it.
This year I've continued to have some issues with my knee, and I may still end up requiring surgery to fix that problem. I've also had trouble with my hands and ended up needing knuckle injections. And, of course, there are all the never ending battles with insurance companies (and battles and battles and battles and battles and battles and battles...dear god why isn't there a better system?!?!?!)
Because my RA is an important aspect of our lives, our family has made it a priority to find time to stay involved with the wider arthritis community. We volunteered again at JA Family Day and we had our biggest team yet at the Jingle Bell Run. APL also participated in his first California Coast Classic, where he rode his bike 525 miles down the coast of California to raise arthritis awareness and raised almost $6,000 for the Arthritis Foundation. This blog was also named one of Healthline's 22 Best Rheumatoid Arthritis Blogs of 2012, and I was hired by Answers.com to manage their Arthritis category.
Five years ago I was a twenty-five-year-old dual degree graduate student, hell-bent on achieving all the things I thought I wanted (or thought I ought to want), but I wasn't actually sure what I wanted at all or where I was going in my life. I was working myself to the bone and I wasn't even really sure why. I had APL, and we loved each other, but we weren't particularly happy with our lives. Today I am thirty. I've had RA for five years, I've been happily married to APL for two years, and we have an incredible one year old son. We just moved into our very first house and today we are so very happy with the direction our lives are headed.
I will admit that being a mom with RA isn't always easy. I have certainly struggled and sometimes I still worry about how I will manage, especially as OZL grows and gets stronger and more active every day. And I'll also admit to being a little scared about the prospect of adding another child (or maybe even two?) to complete our family someday. But, honestly, it's not the same kind of fear I had when I got diagnosed with RA five years ago. That was a fear of the unknown. I was scared because it felt like my life was getting ripped out of my control. But today I realize that my life wasn't even in my control at the time anyways. I had no idea what I wanted or how to get there. But now I do, and it makes all the difference in the world.
May/June Recap!!
So many things have happened since the last time I posted on this blog that I'm not even sure how to begin catching up! I think I'm going to have to just cheat and post a bunch of pictures or I'll have no hope of ever getting caught up with everything that is happening right now!
At the end of May, our whole family loaded into the car and drove for two days to get to Groveland, California where APL's parents have a Cherry Farm. It's also the location where APL and I got married two years ago. (How has it already been two years?) We spent a week at the farm - swimming, riding tractors, playing, visiting, and eating delicious food.
We also got to spend some time in the most beautiful place in the world - Yosemite National Park. We took OZL on a bike ride around the valley and showed him Yosemite Falls. We also took a little hike in Mariposa Grove and saw the Grizzly Giant (one of the biggest sequoia trees in the world). It was magical to take OZL to a place that I enjoyed so much as a child, and I hope to continue taking him there as he grows up.
Then we drove down to Los Angeles where we got to spend some time with my family and some of our friends from high school. We celebrated OZL's first birthday at my mom's house (already?!?!) We went to the Long Beach Aquarium with my best friend from high school and her daughter and the Kidspace Museum with another friend and her two daughters. My dad took us to the same beach I used to play at as a child, which was also a lot of fun.
As soon as we got back to Colorado, we immediately started packing to move from our townhouse in Boulder to our new house in Louisville. Packing and moving is, of course, highly exhausting. But guess what? Even after all the traveling and packing and moving, I have to say I am feeling pretty good. Don't get me wrong, I am seriously sore and experiencing some major pain in my left hip again, and our new house is still a total disaster area, but I am feeling happy and very optimistic. Our trip to California was great and I am so excited to be in our new home where we will have lots of space and a yard for OZL and River to play in.
Things are looking good around here after 5 years with RA!
Things are looking good around here after 5 years with RA!
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