10 Practical Tips to Tackle Rheumatoid Arthritis Joint Pain

In this article I share 10 helpful and practical strategies to try when you need to get your RA joint pain under control as quickly as possible!

Read more at New Life Outlook RA!

Does Sexism Exist in Healthcare?

Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.

Read more at RheumatoidArthritis.net.

Beyond Pain Scales: 6 Ways to Communicate Pain

In my latest guest post for Mango Health, I consider some ideas to productively make use of the dreaded 1-10 pain scale!

Check it out here!

PT & Me

I know that physical therapy techniques have done a world of good for some people. I also know that I won’t be able to tell if they will help me unless I try them. Do you have any advice for improving the experience? 

Read more at RheumatoidArthritis.net

The RA Pregnancy Chronicles: Sometimes Being Pregnant With Arthritis Is Hard

The RA Pregnancy Chronicles is a series of posts that share my experiences being pregnant while living with RA. This post was written during Week 23 of my second pregnancy. 

Unfortunately I don’t think it can be denied any longer: my RA is officially flaring. I'm also waking up with the most extreme morning stiffness I have ever experienced – it feels like I have been run over with a steamroller. And the fatigue (combined from the RA flare, difficult pregnancy, and chasing a toddler) is beyond soul crushing.

Read more at RheumatoidArthritis.net.

Downright Hard

Because I am pregnant right now, my RA is currently completely untreated. And while I was lucky enough to experience at least some remission during my first pregnancy, I just haven't been that lucky this time around. 

My RA has definately been flaring. And while my usual flares are more of an overall body ache or sometimes a relatively dull, persistent pain in a particular joint, my pregnancy flares have turned out to be different. I have been experiencing excruciating joint pain that comes on without any warning and with barely any reason. This pain will last for a day or two and then disappear almost as quickly as it arrived. So far it has been my right hip, my right knee, my left toes, my left hip, my left shoulder, and then my right knee again. The problem is that the joint hurts so much for a couple of days that it almost incapacitates me, especially since there is basically nothing I can take or do to help with the pain that is safe for the baby.

For example, last night I read a book for about ten minutes before going to bed. Half an hour later, my right wrist was in in such severe pain that I could barely sleep. From what? From holding a book open for ten minutes? Apparently. I put a wrist brace on and tried to go to sleep. I ended up taking some Tylenol in the middle of the night. But I just couldn't get comfortable and my wrist hurt so much I barely slept at all.

This morning it felt like my wrist was in even more pain. So when OZL decided he didn't want to get dressed, I knew I was in trouble. I pointed to my wrist and tried to explain to him that mama had an owie. He listened very intently and said "mama has owie." But he is not even two yet, so he forgot all about mama's owie as soon as I tried to dress him. He ended up flailing around and screaming, and I had no choice but to physically fight him into his clothes. But the end of the ordeal we were both sobbing.

Luckily it is a school day for OZL, so all I really had to do was get him dressed and get him to school. But, to be perfectly honest, I'm not sure what I am going to do with the rest of my day at this point. I'm supposed to be writing today, but even typing this short post is pretty slow and painful because of my wrist. 

I guess the moral of the story is this: while my kids are completely worth it and I love having them more than anything, sometimes being a mama with RA is just downright hard.

(P.S. The book I was reading for 10 minutes last night was a baby name book - which only leads me to wonder how I will ever survive on days like this when I am outnumbered!!)

A Random Act of Kindness

I have been having a rough time lately. I’ve been trying to ignore it and deny it for weeks, but unfortunately I don’t think it can be denied any longer: my RA is officially flaring. During pregnancy.

Fingers. Wrists. Elbows. Shoulders. Neck. Hips. Knees. Ankles. Toes. All are swollen and stiff and painful to move or touch or use. I have also been waking up with the most intense morning stiffness I have ever experienced - it feels like I have been run over with a steamroller in the night. And the fatigue is beyond soul crushing.

I have to admit that I am scared. I’m scared because there aren't very many pregnancy-safe options to help me deal with all this pain. I’m scared because I am barely halfway through this pregnancy and I’m honestly not sure how I will survive the second half. But I am also terrified that once I do manage to make it to the end of this pregnancy I am going to be in no fit shape to take care of two little boys.

This morning was particularly rough. It took a massive amount of resolve to haul my steamroller-crushed body out of bed, and then OZL woke up and screamed for more than 30 minutes straight and there was nothing I could do to console him. (I think he might be working on his two-year molars...gah the timing!). And, despite being well into my second trimester, I am still dealing with intense morning sickness and soon found myself gagging over the kitchen sink yet again (after which OZL announced "bless you, mommy!" so at least he is a polite little grump!). After surviving all this I looked at the clock. It was not even 8:30 a.m.

Unsure how we were going to survive through the day, I loaded OZL into the car. I figured I would drive through Starbucks and get myself a latte to help me feel more human - and then I would see about finding some trucks or construction to distract my grumpy toddler. So I ordered my latte, but when I pulled up to the window to pay the barista informed me that the person in the car in front of me had already payed for my order.

I honestly do not know how to thank that person enough. Living through this difficult pregnancy and dealing with this arthritis flare at the same time has left me feeling so very, very alone. Although this person was a stranger who knew nothing about me, somehow this random act of kindness made me feel a little less isolated. I drove to the closest construction site and enjoyed my treat while OZL and I watched the heavy equipment roll by. And it was absolutely the best both of us have felt in a while - which gave me hope for getting through the day.

That person will never know just how much they did for me today, but hopefully someday I will be able to pay it forward to someone else.

Knee Needles

I'm writing this blog post from the lodge at Loveland ski area. I wish I could say I was able to hit the slopes with my dad and APL, even just a little bit, but sadly I am still having a lot of trouble with my knees. 

After almost two weeks of taking oral prednisone, my knees are still killing me. It was getting difficult to stand in the kitchen long enough to make a meal or unload the dishwasher. It was getting difficult to drive. Even sitting on the couch seemed to hurt - not that I get to do much couch sitting while chasing aflyer my one year old! Though my rheumatologist asked me to check back after trying the oral steroids for three weeks, I didn't think I could make it that long. It felt like my knees were only getting worse. 

So I emailed my rheumatologist and last Friday I went in to have cortisone injected directly into each of my knees. It wasn't exactly a pleasant prodecure. Those needles are pretty long and went pretty far into each of my knee joints. The pain was sort of like a zing that traveled through my whole body. But I figured it would be worth it if my knees would stop hurting so much. 

Friday evening my knees felt way more swollen and stiff than before - which I guess makes sense considering they were literally filled with a foreign liquid! But I wasn't exactly expecting to spend Friday afternoon and evening more or less crippled on the couch in the family room. Thank goodness APL was there to help me wrangle OZL! After about 24 hours or so, my left knee started feeling a little bit better. But my right knee (the one that has gone pop so many times) is still pretty painful four days later.  

I'm pretty sad and frustrated about it because I guess I sort of thought that cortisone injections were as close to a magic fix as possible. I thought I might be able to enjoy my dad's visit in less pain and maybe even ski a few runs with him. I emailed with my rheumatologist yesterday and he says to wait a few more days - maybe the cortisone will still kick in. But if it doesn't it could mean that I have an internal injury in my right knee - though I don't remember anything weird happening. I suppose if my knee still hurts in a week or so I will probably need some X-rays. 

In the meantime I guess there is nothing to do but wait and see. And try to enjoy the scenery. 

Means To An End

Last weekend the weather was quite nice, so my mom and I went out into the backyard to to start attacking the one hundred billion leaves that were blanketing my lawn. Unfortunately my knees have been in so much pain lately that I found myself wearing double knee braces. And I only was able to do a little bit of raking before I had to give up and sit down.

I tried to remember the last time my RA pain had been this bad. Luckily, this blog is like a health timeline for me, so I scrolled back through my posts until I found the last time I was wearing double knee braces: right before my wedding and then again on my honeymoon.

There was a reason I was in so much pain at that particular time. Although I didn't make it public at the time, when my wedding rolled around I had already been off methotrexate for more than six months. I needed to get it out of my system so that it would be safe to conceive OZL. And although I stayed on Enbrel until I found out I was pregnant, Enbrel alone just wasn't enough to keep my RA completely under control. During the six months leading up to my wedding and the four months it took to get pregnant, I dealt with massive knee pain, excruciating hip pain, and extreme fatigue.

Luckily, I did experience at least some remission during my second trimester. But, by the time I hit the third, I was dealing with a huge pregnant belly and hip pain, hand pain, and major morning stiffness (not to mention a couple pregnancy complications). In the end I was put on bed rest until I hit 37 weeks, and OZL was brought into the world a bit early, which ended up being better for both of us.

I nursed OZL for three months until I reluctantly stopped so that I could start taking Enbrel again. Getting back on the Enbrel made a major difference in my quality of life and ability to be the mom I wanted to be. But since that time I have dealt with flare after flare because I never went back on the methotrexate.

Why? Because we want OZL to have a sibling. I have two siblings and APL has one. Neither of us can imagine our lives without our siblings and we really, really want OZL to have the opportunity to grow up with at least one brother or sister.

I never went back on the methotrexate because it was too much of a time commitment. It would take several months before it even started helping, plus however long I stayed on it to get the benefit, plus six more months to get it out of my system again before it would be safe to try to conceive another baby. We decided we didn't want our children to be so far apart in age. And, while we probably would have preferred to wait until OZL was a little bit older to start trying for a second baby, in our world the longer we wait the longer I end up dealing with RA that isn't completely treated. Which means I am living with more pain and more fatigue. So, after weighing all of our options, we decided to start trying for baby #2 when OZL turned one in May.

It has been seven months and unfortunately we are not pregnant yet, though I will admit that for at least two months my ovulation lined up so closely with my RA flares that we weren't even able to try. We are trying to remain optimistic, but in the meantime my RA has gotten worse and worse - to the point where I am wearing double knee braces just to stand in my own backyard.

The Enbrel just isn't enough on its own, and over the counter NSAIDs aren't helping. So I finally went to see my rheumatologist yesterday. With my options for medications severely limited by my desire to get pregnant, I agreed to try some prednisone (i.e. Satan's tic tacs). Prednisone and I have a long love-hate relationship. It is wonderful because it usually works great to give me less pain and more energy, but with prolonged use I get almost all of the nasty side effects. A few years ago, after being on prednisone for more than a year, I decided that the side effects were way worse than the benefit and swore never to use it again. But, of course, there are only so many options - especially when trying to conceive.

I know that I need more than just Enbrel to keep my RA under control so that we will have a chance to have a second baby. I am really hoping this will be a temporary commitment to prednisone, perhaps a month or two until I am pregnant at which point hopefully I will get some remission and not need it anymore. I don't look forward to moon face or weight gain or insomnia or blood pressure issues. But I do really look forward to growing our family - and that will make it all worth it in the end.

How Do You Dress A Tornado?

I really can't believe it, but OZL will be 11 months old in only 8 more days!! One year ago today I was 8 months pregnant, dealing with RA flares, and being tested for preeclampsia, which I eventually was diagnosed with resulting in bed rest. As soon as I hit 37 weeks, OZL was born via C-section. And, via some insane time warp, he will be turning one next month!!!

These days, OZL is interested in everything. He crawls in all directions at about the speed of light and pulls himself up on anything he can reach, reguardless of whether or not it will actually support his weight (case in point: he pulled a folding chair over on himself in music class this morning.) Most of the time he is speedy and full of energy and a very happy baby. Though he has also spent a fair amount of time over the past week or so being a big old grumpyface since the poor little dude has 5 teeth coming in at the same time.

Getting him dressed in the morning is like trying to dress a tornado. He flips and squirms and wiggles tries to crawl away while my clumsy RA hands fight to snap those tiny snaps and button the little buttons and pull itty bitty socks onto itty bitty feet. If it would only stop snowing I'd just put a clean diaper on him and call it a day! (Welcome to spring in Colorado - we've had more snow in the past few weeks than we got all winter.)

Honestly I have been struggling to keep up with him lately, especially since PT doesn't really seem to be helping. Both my knee and foot and all the muscles around them have been hurting a lot, and my knee has been doing this weird cracking/popping thing. The kneecap hasn't dislocated again (thankfully) but it doesn't feel like it's getting any more stable either. I'm wondering if surgery is imminent - and if it is how on earth I will ever keep up with OZL then?

I do have a college student who comes twice a week to watch OZL so I can have a couple of hours to get my writing done, but lately I've had to use most of her time to go to PT rather than work. So I'm using all of OZL's nap times to do my writing for Answers.com. I'm getting the work done, but I have almost no time to myself to rest or relax these days.

Hopefully I'll find a way to get a break soon!

PT and/or Surgery

I saw the orthopedist on Friday about my foot and my knee. There's good news and there's bad news.

The good news is that she isn't worried about my foot. It's bruised as a peach but it will heal. I'm supposed to wear the very sexy shoe you see in the photo for the next few weeks to help it heal, and I should try to stay off it when it hurts too much, but other than that it will be fine.

Surprise, surprise: the bad news is my knee. According to the orthopedist, the ligament that is supposed to hold your kneecap in place was likely destroyed the very first time my knee went pop. And apparently there's nothing we can do to get it back. So instead we're going to try some PT to strengthen the other muscles in my leg. This is supposed to encourage the kneecap to stay in place, but there's no guarantee it will keep my kneecap from dislocating again. Unfortunately, any additional dislocations could damage my knee and might lead to osteoarthritis (the last thing I need). So, if PT doesn't help and/or my kneecap keeps dislocating itself I may need to consider knee surgery.

In the meantime I'm just hobbling around with OZL (thankfully with the help of my mom right now!) and trying to stay positive. 

Pop Goes the Kneesel (YET AGAIN!)

It happened again on Sunday night. Only this time was worse than last time or the time before. Much worse.

I was standing in the kitchen holding a mango that I was going to cut up to give to OZL for dinner. I started to take 2 steps across the kitchen to get a knife, but instead I found myself on the floor in a lot of pain. This time I reached down to my knee and actually felt my kneecap in the dislocated position. And I'm pretty sure I was actually screaming in pain until I felt it pop back into place under my hand. Then I was at least able to breathe a little easier, though I was still in an awful lot of pain.

Luckily I wasn't holding OZL or a knife when I fell. Luckily my sister and APL were both there to help me. They practically carried me to the couch where I spent some time with ice on my knee. Then I took some painkillers and hobbled off to bed. I figured, like the last two times this happened, that I would feel better in the morning. Maybe I would have to wear my knee brace for a couple of days, but I didn't expect anything worse.

But I was wrong. The pain kept me awake most of the night - and sometime around 3am I realized that it wasn't just my knee hurting, my foot was hurting too. By the time it got light I discovered that my foot was completely purple. Somehow in the process of falling I had managed to hurt my foot too. And my knee was still a swollen mess. 

Since I can't drive (it's my right leg) and I am having trouble walking, let alone being able to care for OZL, APL had no choice but to take the day off from work to take care of us and drive me to urgent care. We spent several hours at the doctors - primarily arguing about the fact that we do have insurance but we don't have insurance cards yet since APL just started a new job. That was a lot of fun. Eventually, after poking and prodding my knee and foot until I cried, they took some x-rays. 

The doctor wasn't positive, but said there may be a small fracture in my foot. Based on the bruising and the possibility of a fracture, he gave me a shoe/boot thing to wear that will keep my foot from flexing while I walk. Luckily there seems to be no permanent damage to my knee. But I do need to figure out what I can do to keep my knee from randomly dislocating itself with no warning whatsoever. So I have an appointment to see an orthopedist on Friday.

Which is a good thing, because last night as I was standing up from a seated position my kneecap almost popped out again. I somehow managed to move my leg or take weight off it or something so it didn't come out all the way, but I felt it sort of...slip a little out of place. And it was not a pleasant feeling. And I'm not loving the broken/bruised foot either.

I'm still having trouble walking and so taking care of OZL isn't very easy right now. Luckily my mom just so happened to be coming for a visit, so she is helping me out and APL was able to go back to work today. In the meantime I am trying to keep myself from fixating on the "what ifs" (what if I had been holding OZL? What if I had been on the stairs? What if I had been alone? What if I had been pregnant?) I'm really trying to focus on the future and figuring out how to make things better. 

But I will admit that isn't always easy. Especially when I am frustrated from being in so much pain.

Jingle All The Freezing Way!!

Today we braved the 20 degree weather to participate for the third time in the Jingle Bell Walk for Arthritis! I am super excited to report that we had our biggest Team Z yet - 18 adults, 1 kid, 3 babies, and 2 dogs!!

I did almost the whole 5K despite my sore knee (I must admit that I took a slight shortcut at the end because OZL, despite being bundled like an eskimo, was getting cold and hungry). I'm so grateful to all my friends for coming out today to support me despite the freezing weather!

Pop Goes The Kneesel (Again)

Remember when this happened? Well the other day it happened again. I was at my sister's apartment and we were making dinner. We were listening to music, but then decided to put Funny Girl on instead. I sat down on the floor in front of the TV to put the movie on and then got back up - no problem. 

But as I walked over to turn the music off suddenly my knee gave out and I was on the floor in tears. Just like last time. Only this time I was carrying OZL when it happened.

Luckily he was strapped to me in the BabyHawk, so I didn't drop him or hurt him or anything. But he did get pretty scared as we fell to the floor. My sister rushed over and took him from me and he calmed down in a minute or two. And with some ice, some rest, a knee brace, and lots of advil my knee is doing ok too. It still hurts but I can walk on it and everything. So everyone is fine.

But it is a little scary to think about the what ifs. What if this had happened when I was carrying OZL down the stairs? What if I had been alone? Or in the grocery store? What if I had dropped him or he had gotten hurt? 

I guess it doesn't help to get to freaked out over things that haven't happened. Things that hopefully will never happen. But it does make you think. Being a parent means being as careful and prepared as you can be, but it also means being ready to deal with the unexpected. I guess being a parent with arthritis just makes things a little bit more unexpected. 

Bed Rest

If you're having a busy day at work or a rough day at school, I'm sure bed rest must sound pretty awesome. You probably imagine luxuriating in bed all day, eating bon-bons, watching movies, having people bring you food or give you a foot massage. But let me assure you of this: bed rest is really not very much fun. Especially with arthritis.

I have been laying in bed, getting up only to use the bathroom, since I got checked into the hospital on Friday afternoon. So it has only been a few days but all the immobility has already been totally killer on my joints. They pretty much all hurt - which obviously doesn't make laying around all the time very easy or very fun. And, since my OBs want me to primarily lay on my side to increase bloodflow and reduce my blood pressure, my hips are objecting loudly and constantly. Yesterday afternoon I had to resort to some vicodin just to keep laying in the bed. 

Luckily, APL is taking extremely good care of me. He set up my computer next to the guest bed with a trillion movies and TV shows. He also got permission to work half days from home, so he brings me lunch and makes me dinner every day, and having him home limits my need to go up and down the stairs. River is also being extremely good company. She seems to know something is wrong and spends a lot of time laying on the bed with me. She cheers me up immensely. Our friends are also helping out - one brought us a pot roast for dinner on Monday, another took River on a hike yesterday, a third is texting me daily from California to make sure I'm hanging in there. We're very lucky to have such a good support system. 

It still isn't easy. My body hurts a great deal and today I feel like I'm having trouble being entertained by anything, even though I have a million options. I'm really hoping to make it another week on bed rest to give our little guy a bit more time to cook. While of course I want what is best for my baby that is also an overwhelming thought because the joint pain and stiffness seems to increase daily. It's hard to lay around and rest when it hurts to lay there.

But I'm trying to take it a day at a time - an hour at a time if necessary. And, luckily for me, APL will be home soon. And that always makes me feel better.

Pregnancy & Prednisone

I've been putting off writing this post for days. I have to admit that I am feeling a little bit reluctant about being my usual honest self here, because I really don't want to scare or discourage anyone out there with RA who might be considering getting pregnant. 

But, ultimately, I decided that one of the things that scared me the most when I was considering getting pregnant was that there was just so little real information out there about pregnancy and RA. Sure you can find lots of articles with vague medical information - "many women with RA experience remission when pregnant" - but what does that even mean?!? How many? How much remission? What if I am not one of the "many"? Then what?!?! When I was planning to get pregnant I desperately wanted to find just a few personal stories about what being pregnant with RA is really like, so that I could have some idea - any idea - about what I realistically might be facing.

So, with the disclaimer that everyone's RA is different and there seem to be no hard and fast rules about RA and pregnancy (plus the always obvious talk to your own health care providers to figure out what is best for you), let me share with you what I am currently up against:

It's week 34 of my pregnancy - six weeks to go - and I have really been struggling.

The vast majority of the past few weeks I have been in a great deal of pain, extremely achy, highly fatigued, and seriously uncomfortable. Most days I find myself on the couch by mid-afternoon, with an ice pack on each hip, hoping for just a little numbness and relief. My hands are so stiff and sore when I wake up in the morning I feel like it's a wonder if I can make myself a cup of tea. I'm exhausted and having trouble sleeping. I take my tylenol and pretend that it's vicodin, hoping to trick my brain into feeling better.

Despite the mounting evidence over the past few weeks, I've been in a little bit of denial about the return of my RA symptoms. Some part of me kept stubbornly insisting that these issues could just as easily be caused by third trimester pregnancy as by RA. There's a huge belly and a lot of extra weight on those hips - no wonder they hurt! I have another pregnant friend who is dealing with swelling in her hands - maybe that's all it is! And all pregnant women are exhausted and have trouble sleeping! Just hang in there!

But then last week my prenatal massage therapist commented on the heat radiating out of my hips. Then my pilates instructor commented on how hot my hands were and pointed out that my shoulder was behaving just like it does during a flare. Then, despite keeping my exercise routine extremely low impact, I suddenly started experiencing some unexpected - yet highly familiar - pain in my knee that sent me searching for my knee brace. Within a day or two I started noticing increased pain in both of my knees whenever I stood or walked for longer than a few minutes.

With the number of affected joints adding up, it seemed more and more difficult to say that this pain was pregnancy-related (rather than-arthritis related.) So I brought it up with my OB on Monday - and she agreed.  While pregnant women often experience hip pain, she told me, the hand pain and the knee pain clearly suggested arthritis. And despite everything I have been doing to try to manage the pain (physical therapy, pilates, water aerobics, prenatal massage, heat, cold, rest, relaxation, de-stressing...) the pain was only getting worse. My OB's concern only increased when I told her about the difficulty I had practicing birth positions. She thought it was time to start taking some prednisone. 

As anyone who has read this blog in the past knows, I sincerely dislike prednisone. Ok, let's not lie: I pretty much hate the stuff. I hate that it works so well but comes with such nasty side effects (at least that's how it seems to work for me). I hate the way it makes me look and feel. I hate how hard it is to wean off of once you have been on it for an extended period of time. (And I hate how I feel like just a tiny bit of a failure for having to resort to prednisone when I really don't want to...even though I know that is absurd.)

Unfortunately, even putting aside my personal feelings about prednisone, the decision to start taking it while pregnant is just not quite as simple as I wish it was. It does come with a price. First, prednisone (or any steroid) can mess with your adrenal gland, and if your adrenal gland isn't working properly it can inhibit labor. So being on prednisone now will require me to have an IV dose of some other drug (can't remember the name...placenta brain!) during labor to make sure my adrenal gland is functioning well enough to get me through labor. This is obviously not the end of the world. It's not like I'm a stranger to IVs, and it sounds like I'll only need one dose - so I won't necessarily be tethered to an IV the whole time.

The other issue is the side effects. We know that in the past prednisone has seemed to mess with my blood pressure. And, since my favorite jug-o-pee test did come back a little bit high, I am still at risk for developing preeclampsia. This would obviously not be safe for me or the baby. So we'll have to keep an extra close eye on my blood pressure while I am taking the prednisone to make sure everything progresses safely. 

But, despite all of this, I am also reasonable enough to recognize that prednisone is pretty much my only option right now. It will help control my RA symptoms while also being safe for the baby. It will make the remainder of this pregnancy more bearable. It will reduce the joint pain which will help me get through labor. And feeling better right now and having a less painful and productive labor is better for me and the baby. 

So, my love-hate relationship with prednisone continues. And, honestly? After just one dose yesterday I swear I am already feeling better today. 

Museum Walking is Brutal

Even for the most physically fit people, there is something about the slow, ambling pace of museum waking that is brutal. It exhausts everyone. So what hope does a totally exhausted girl with RA, who is already wearing two knee braces, have of actually enjoying the art instead of desperately looking for somewhere to sit down for a while?

I'll tell you: a wheelchair. 

When we were on our honeymoon, I was about ready to cry after just an hour of walking around in the Reina Sofia Museum. My knees hurt so bad (probably from being cramped on the plane for so many hours) and I was so tired (probably from all the wedding excitement and from being cramped on the plane for so many hours) that I wasn't even seeing the amazing Picasso paintings on the wall anymore. All I could see were the benches and how big the room was, which would give me an idea of how long I would have to rest before APL was ready to move to the next room. I wasn't enjoying myself. 

However, I didn't relish the thought of a being pushed around in a wheelchair either. I kept watching little old grannies hobbling around the galleries and thinking that it would be shameful for me to get in a wheelchair if even the grandmas didn't need one. 

But at some point the opposite thought crossed my mind: if I wrecked my legs on the first day of the honeymoon out of embarrassment and stubbornness I would miss out on so much more of the trip.  And, yes, the grandmas may be walking around, but their knee joints aren't my knee joints. And when would I be back in Madrid to actually enjoy all the art we were supposed to be enjoying? Maybe never. So, after lunch, I asked APL if he would push me in a wheelchair.

This might sound silly, but I feel like it took guts to sit in that wheelchair. But I'm really, really glad I did.  Being in the wheelchair was so much better. Yes, people did stare at me (and I'm sure tried to guess what was wrong with me) but, when I was looking at the art, I didn't even see their stares. In fact, I probably enjoyed the art more than anyone else that afternoon - I was so appreciative not to be in pain!! APL and I also had a lot of fun watching people get out of our way and zooming down ramps. And, with APL pushing me, we also spent a lot more time together talking and discussing the art (whereas before APL had been looking at the art and I had been sitting on the nearest bench and we hadn't been talking at all).

Most museums will let you borrow a wheelchair for free - generally at the information desk or coat check area. They will probably ask you to sign a paper saying you borrowed a wheelchair, but they won't ask you why you need it. Other people at the museum will stare at you, but it's really none of their business. If you know you would enjoy the museum more sitting down and you have someone who is willing to push you, just do it. It will be worth it - it might even be fun.

And afterwards, don't forget to thank your manservant....I mean husband! ~;o)

Third RA Anniversary

I have so many posts to write about the wedding and the honeymoon - and I will get to those soon, I promise! But, before I do, I need to write this post! Because somewhere in the middle of all the wedding madness, my third RA diagnosis anniversary passed without me even noticing. It seems hard to believe, but I am now 28 years old and it has been three years since I was first diagnosed with RA.

At the beginning of this year I had some doubts about whether the Enbrel was working for me - but ultimately I ended up staying on it. I was on cymbalta for a while too, to cope with depression and frustration over my limitations. This year I have dealt with bad knee days, hand pain, even more hand pain, until eventually I was diagnosed with De Quervain's tenosynovitis in my right hand. The first flare was the most painful, but I still have trouble with that tendon from time to time. For example, I now mouse primarily with my left hand to avoid flaring that tendon.

This year I've continued to deal with fatigue and also still had trouble sleeping, two problems that don't seem to go together but apparently do. I became anemic again and dealt with nasty bruises and hair falling out. I suffered from fevers, common colds (that seemed not so common to my poor immune system), and one mysterious illness the doctors couldn't quite figure out despite many unpleasant tests. And, as probably anyone with a chronic illness can tell you, this year I spent way more than my fair share of time fighting with the pharmacy and battling with insurance, over and over again, to try to reduce the massive amounts of money we spend on medication for my condition.  However, on the good side of health things, after battling for over a year I finally achieved a normal blood pressure!

A lot of other good things happened this year too!! I started pilates and stuck with it - once or twice a week - for the entire year (though I have to admit I haven't been back since the honeymoon. Next week, I swear!) We did our first first Arthritis Walk in December, and raised more than $4,000 for arthritis research with the help of more than 70 friends and family members. I finally graduated from law and graduate school and earned my JD and MS (a task that seemed nearly impossible when I was first diagnosed with RA). We celebrated APL's 30th birthday and, despite being wrapped up in wedding planning, did another Arthritis Walk in May.

As per usual, I also did my fair share of traveling - something I am delighted I haven't let my RA stop me from doing! We visited my sister and her boyfriend in Seattle and I visited my cousin and her family in Ohio. I traveled to Groveland several times for wedding planning and also spent some time in Los Angeles with my family. In April I went back to Los Angeles again for my bridal shower, and then to Seattle again for my bachelorette weekend. And in May we went back to Groveland for the wedding and then went to Spain on our honeymoon (posts about this soon, I promise!)

So what have I learned in the three years since I was first diagnosed with RA? The first year was obviously the hardest, but the second year wasn't a whole lot easier and had major ups and downs as well. Slowing my life down to the pace necessary to live comfortably with my RA has been a difficult process for me. Though I know I have made enormous progress, it is still something that I have to work on every single day. 

I know everyone would still like to hear me say that I am feeling a lot better three years later - but unfortunately RA just doesn't work like that. For the most part, I often feel physically the same as I did in the first two years of my illness - fatigued and seriously achy.

However, despite these same physical feelings of pain and exhaustion, I can confidently say that today my life with RA is a lot better than it was three years ago. This is because I have had time to learn about my RA and adjust my life to suit it. And I don't just mean learning about RA in general, I mean learning about my RA - the quirks of my joints, the little signals my body gives me before a crash, what works for pain and what isn't worth bothering with, how to relax and slow down when I need to, which advice to follow and which advice to ignore, etc. 

Physically, I often feel the same, but mentally I know I have come a long, long way since that day I got diagnosed three years ago. And that's pretty darn great. So, once again...From This Point. Forward!!

The May 2011 Denver Arthritis Walk

Yesterday APL, River and I walked in the May 2011 Denver Arthritis Walk. It was rain-snowing when we left the house, but luckily by the time we got down to Denver it was only gray and not even very cold. But, maybe because of the bad weather threatening, there weren't nearly as many people at this walk as there were at the Jingle Bell Walk in December. So, I have to admit, the atmosphere wasn't nearly as exciting as it was in December - though River seemed equally excited!

I did manage to just reach my goal of having more people on Team Z at this walk than at the last walk. At the Jingle Bell Walk we had nine people (and three dogs) and at this walk we had eleven people (and the same three dogs!) So I am excited that I was able to achieve that. Unfortunately I don't have a full team picture - only a partial one. So for this post I chose a picture of APL and me in my blue arthritis hero hat. My knees were really bothering me yesterday, so I'm really glad I had APL's hand to hold to finish the walk.

Thanks to everyone who came out to the walk to support the Arthritis Foundation!

Long Skirts!

I love to wear long, flowy skirts - especially on a bad knee day!