Saturday, February 27, 2010

Pink Glove Dance

I've never posted a video on this blog before, but this one made me feel so happy and hopeful I just had to share the good feeling. It's like Scrubs in real life, and it's wonderful!!



(To be fair, I totally stole this video from RA Warrior's awesome Bulletin Board, which just provided me with a good hour of fun procrastination!)

Thursday, February 25, 2010

Be Happy Toes!!!

Today my right knee is hurting a lot, but this doesn't bother me so much. There's plenty of reasons why my knee might hurt. And I'm obviously used to a little joint pain.

What does worry me a little bit is that my left toes are hurting more than ordinary today. A lot more than ordinary. And my left toes are exactly where my RA started.

I've been off prednisone for almost a week now, but this pain in my left toes doesn't seem to bode well for ENBREL and methotexate on their own.

I guess only time will tell for sure. Be happy toes!! Pretty please?

Wednesday, February 24, 2010

Side Effects May Include Loss of Social Life

For the last year and a half since my diagnosis, while I've been going to a billionty doctors appointments, dealing with pretty much every kind of joint pain imaginable, learning to live with a compromised immune system, trying to fix my blood pressure, and suffering through enough fatigue to last me for the rest of my life, something has been nagging at the back of my mind. Now, with APL in Washington D.C. taking a class, leaving me home alone in Boulder for two weeks, there's no more denying it:

I have
NO social life.

It's not that I don't have friends. I have plenty of friends. It's just that my friends are spread out all over the country: Seattle, Scranton, Los Angeles, San Francisco, Durham, New York...In fact, it seems like they're everywhere but Boulder!

I don't mean to undervalue the loving support of these friends through phone, email, and by commenting on this blog. I can't even explain how much it means to know that they are there for me. I am also happy that I am starting to gain support from a growing circle of "blog friends," people who I have never met in person but who share my diagnosis and comment on this blog or email me. Some days, it's the small comments from my faraway friends and blog buddies that keep me from jumping out the window.

But there's no denying that friendship and support via phone or computer wires just isn't the same as having lunch with someone in real life. Or watching a movie together. Or just talking in person. And since APL left on Saturday morning I've been completely alone except for a few small interactions with some guy at the park who's dog played with my dog, a grocery store employee, and doctors. (By the way, the orthopedist had good news and bad news. Good: my knee is looking good and healing well. Bad: she said it's very likely that the kneecap will pop out again someday, so that's fun.)

Other than APL, I just don't have support in Boulder anymore. All the people APL and I currently hang out with started out as APL's co-workers. I know that they're my friends now too, but I've never hung out with any of them without APL, and though I love them they aren't really the kind of friends that will check in on you when you're feeling low. What I really need is some girlfriends. But RK moved to Pennsylvania and the other girls I started law school with have graduated and moved on. Another friend stopped talking to me completely shortly after my diagnosis - I guess she couldn't handle having a sick friend or something.

What makes this situation especially difficult is that it isn't really very easy for me to try to make new friends right now. I don't have the energy that an ordinary 27-year-old would have, and that can be difficult to explain to people you've just met. Not to mention feeling tired often keeps me from doing things where I might have the chance to meet new people. Also, feeling icky so often and gaining weight from the meds doesn't exactly help my self confidence or make me feel outgoing.

However, rather than wallowing in this loneliness, I set out this week to try to improve my social life! Unfortunately, I haven't had much luck so far. Too bad my social life doesn't improve with points for effort!! I offered to take a friend I don't get to hang out with much anymore to dinner, but I haven't heard back from her yet. I invited eight (yes, eight) law students to have a ladies lunch on Friday afternoon. I basically invited all the law students I know. But two are out of town, one has to work, one has other plans already, and the rest didn't respond at all.

In the end, I did manage to basically invite myself to dinner at a friend's house on Saturday, which I am really excited about. It may seem like a small thing and perhaps silly, but I think it will be really good for me not to spend the whole weekend alone. Even though one out of ten tries isn't exactly an excellent percentage, at least it's a start.

But, of course, I had to request that we have a low sodium dinner. While my friend was super nice about it and said she was totally willing to accommodate my needs, it still made me feel like a major pain in the ass. No wonder no one wants to hang out with me!!

And, until Saturday, I guess this cheese stands alone.

I Have a Smart Pen

This semester started off with a problem: one of my professors, a professor I've never had before, does not allow laptops in his classroom. I actually understand the reasoning behind this rule, as I have certainly been guilty of checking my email or Facebook during class myself. However, this rule presented more of a challenge to me than it did to my classmates: how will I take notes by hand for an hour and a half when I can hardly get through handwriting a thank you note?

I've been lucky enough (so far!) to have had really good experiences with being honest with my professors about my RA. They have all been very understanding and accommodating once I explained to them what I was going through. (Including one professor who, I am ashamed to admit, I actually broke down crying in front of during the semester right after my diagnosis. I am now in my third class with this professor and he has become my favorite professor!) So, based on these experiences, I decided to talk to my professor and tell him that taking notes by hand would be a particular problem for me.

I was not disappointed - this professor was just as understanding as the rest have been. He was completely willing to let me use my laptop in class to keep up with my note-taking. However, I wasn't sure that was what I wanted, because it would single me out as someone getting special privileges in that class. This would mean either (1) I would have to explain why I needed the laptop, telling the whole class about my disability, or (2) we could say nothing and I've have a bunch of law students annoyed at me for getting an unfair advantage. Neither of these options were appealing.

So I spoke to University Disability Services to see if they could offer me any advice. Registering with Disability Services was not easy for me, but I'm so glad that I did because they have actually given me some great help and advice. And heaven knows I can use all the help I can get having RA and being in law school and grad school all at the same time!!

Disability Services recommended the livescribe SmartPen. I bought mine at Target. It was a little expensive (almost $200) but it was 300% worth it!! This is the COOLEST PEN EVER!! Using special paper (which you can buy for about $20/notebook or print pages yourself) you turn the pen on, press record, and take notes like a regular pen. The awesome thing is that the pen links what you are hearing with what you are writing. So if your professor is listing things and you can't keep up, you can just write "one, two, three" as he says them. Later, you can go back and tap on "two" to hear the second thing your professor talked about!! It is the coolest thing ever!! If my description doesn't make sense, watch this video.

The SmartPen also has a tiny little camera and a USB connection, so you can download the notes you took on paper to your computer with the audio. It is perfect for those days when my hands can't quite keep up with my note-taking or for when my hands get tired after about an hour of class. I still have access to information I might otherwise have missed, information that most of my classmates have probably written down, which can make all the difference in the world in law school.

If you are a student and you have RA (or any other disability that makes it difficult for you to write by hand or keep up in class, for that matter!) I highly recommend the SmartPen. (Just make sure you have your professor's permission to record the lecture and make sure you recharge the battery after every class!)

Tuesday, February 23, 2010

40% of February

Surprise, surprise: despite being on two different drugs to fix it, stopping prednisone, doing a much better job with my low-sodium diet, and exercising as much as my knee and fatigue will possibly permit, my blood pressure is still high. Awesome.

And, of course, the drug I was put on for my blood pressure last time is causing some unwanted side effect. ACE inhibitors? Made me cough. Hydrochlorothizaide? (Now there's a mouthful!) Made my calcium too high. So we've moved on to blood pressure medication #897. Ok, ok, really it's only been five or six different medications. But it feels like a million.

As has been true for the past nine months, I'll get some more blood tests done and meet with my doctor again in two weeks to see how my blood pressure is doing. Honestly? I'm starting to get pretty discouraged about this whole blood pressure thing, seeing as I'm doing everything in my power to fix it and it doesn't seem to be helping at all.

But, I also booked a follow-up appointment with the nutritionist today, so maybe that will help. I also (beware: TMI) booked my annual exam at the Women's Clinic. They had a cancellation this Friday so I took it, just to get it over with. Doctors appointments 4 out of 5 days this week? Don't mind if I do! [Insert sarcasm here.]

Of course, this brings my total number of medical appointments for this month to ELEVEN. Which means I've been to the doctor on almost 40% of the days in February. I should totally get a raise.

Monday, February 22, 2010

My Secret Full Time Job

February is a short month. And we're only 22 days in. But I have already had SEVEN medical appointments this month alone.

(1) Physical therapy for my paterllar sublexation.
(2) More physical therapy.
(3) General doctor for blood pressure.
(4) Rhuematologist.
(5) Physical therapy again.
(6) My first appointment with the nutritionist. (Did you know that there is sodium in everything?? So turns out I've been doing a crummy job at being low-sodium. So, hopefully with the nutritionist's help I'll be doing better at that soon.)
(7) Even more physical therapy.

And I'll rack up at least three more by the end of February:

(8) General doctor for blood pressure tomorrow.
(9) Orthopedist follow up for paterllar sublexation on Wednesday.
(10) Physical therapy again on Thursday.

March doesn't look to be much calmer.

(1) (2) (3) (4) (5) For the time being, I'm still going to physical therapy every week. Between my knee and other RA issues, will I have to keep going? Probably.
(6) For the past nine months I've been seeing my general doctor every couple of weeks for the blood pressure, so she'll probably have me book at least one follow-up for March
(7) (8) I'm supposed to book a follow-up with the nutritionist. Maybe I'll be seeing her more than once in March?
(9) Perhaps TMI, but it's time for my annual at the women's center. (Bleh.)
(10) After the advice of two doctors and the unsolicited advice of multiple friends, I'm going to try going to see a therapist again. Starting next week.

On the one hand, I'm really proud of myself for staying on top of all my medical stuff and trying to get the help I need. And it's kind of nice to have a whole team of doctors and specialists who are working to help me feel better.

But...at the same time....multiple doctors appointments every week is completely exhausting. Even without the fatigue from RA and law school I think it would be totally exhausting. As is, sometimes I just feel totally overwhelmed at the thought of just one more doctor's appointment. Going to the doctor has become a damn full time job. And this job doesn't seem to come with any vacation. And that sucks.

Sunday, February 21, 2010

Mi Hermana

Last weekend my little sister and her boyfriend came to visit and it was like a fantastic mini-vacation for us! We picked them up from the airport on Saturday and drove straight to the mountains, through a snowstorm, to the little mountain town of Buena Vista. (Which, I'm sure all you Californians/anyone who speaks Spanish will be appalled to know, the locals insist on calling: B-yuu-na Vista!)

We had dinner at a fantastic little restaurant (that used to be a gas station) called Global Garage. Then we were happy to discover that it had stopped snowing, so we were able to gaze at a billionty stars while we soaked in some seriously hippie outdoor hot springs. Aside from being a liability nightmare (due to pipes and rocks sticking out everywhere - I think we all stubbed a toe at least) we had a great time in the hot springs.

The next day we played a bit in the snow and then drove back to our place in Boulder. My sister made an amazing curry for dinner. Then, since none of us were interested in celebrating Valentine's Day, we decided to play a board game. This led to the unintentional discovery that the most Anti-Valentines' Day thing you can possibly do is play Risk with your significant other. My sister and her boyfriend nearly killed each other! But it the end it came down to a battle between my sister and APL, and luck was with APL so he took over the world.

On Monday evening, my sister and her boyfriend wanted to go to Casa Bonita. So we went. If you haven't heard of it, it is famous from this episode of South Park. (Skip to -02:51 to see the part where they actually go to Casa Bonita.) No joke - the restaurant is exactly like it is in South Park. I also just found this hilarious "Survivor's Guide" (which maybe we should have read before going there!) that describes Casa Bonita by saying "it's like Disney had sex with Tijuana and left the goofy-looking bastard to fend for itself in a random strip mall on Colfax." Needless to say, the food was awful but we really enjoyed ourselves anyhow!

They left on Tuesday evening and I was sad to see them go because we had so much fun. Wish we lived closer to each other! Thanks so much for visiting us!!

Friday, February 19, 2010

Struck at 21 with RA; Coping with it

I recently started reading a blog called "Struck at 21 with RA; Coping With It," written by Skye who is, obviously, a 21-year-old who has recently been diagnosed with RA (and also Sj√∂gren’s Syndrome). It's been quite interesting for me to read about what she's been going through, not only to remember some of the feelings I went through when I was first diagnosed myself, but also to get the perspective of another young person dealing with RA, as most of the people I know with RA are a bit older than me.

I was only 25 when I was diagnosed, it's been a year and a half since then, and sometimes I still feel overwhelmed about figuring out how to live the rest of my life with RA. Sometimes I wish I had gotten a chance to live more of my life without having to deal with this. I can only imagine it being even more difficult to be diagnosed four years younger, but Skye has shown a lot of courage in dealing with the changes life is throwing at her.

I've added Struck at 21 with RA; Coping With It to the RA resources on my blog and I will be following it from this point forward!

Goodbye, Prednisone!!

As instructed by my rheumatologist last week, I just took my (hopefully) last ever dose of prednisone! Goodbye, prednisone!!

Hopefully I'll also be saying goodbye to high blood pressure, insomnia, medication weight gain, and (not going to lie, perhaps most importantly) fat face!!

Now all I have to do is keep my fingers crossed (if I can!) that the ENBREL and methotrexate can stand alone in keeping my RA pain under control. Otherwise its back to the drawing board. Wish me luck!

Thursday, February 18, 2010

In Re: Percieved Pain v. Actual Pain

I probably shouldn't be writing this post. I've been having quite a bit of pain in my wrists and I have a lot of computer work I need to do for my externship, not to mention for my classes, so I probably ought to spare my limited abilities for that. But I can't seem to get this post from Kelly at RA Warrior out of my mind, and I don't think I'll really be productive until I do. So here I am, typing.

Kelly's post is about several medical studies that attempt to define the difference between "actual pain" and "perceived pain" experienced by RA patients. I must admit upfront that I haven't had time to read all of these studies myself. But Kelly has been through 66 footnotes and includes links to many of theses studies and it's her conclusions that have got me thinking. She concludes that the overarching theme of these studies is that RA patients actually have low pain thresholds and thus perceive pain to be worse than it actually is. This perception of pain is then worsened by RA patients through catastrophizing.

To start with, I have to admit that I feel wary about any overarching claims about RA patients as a whole, or even as a majority. I only know a few people personally who have RA, but I have met quite a few more through blogging. And if there's one thing we all have in common its that we have all experienced RA differently! While we often have similar experiences or can relate to each other because of RA, I have not had the same RA journey as anyone else, and no one has had the same RA journey as me. The only RA I can hope to truly understand is my own. And, even though this is my 168th blog post, I'm still struggling to figure my own RA out!

Kelly's post made me think about my own RA. My first thought was: wait...I thought I had a high pain threshold, not a low one. That was quickly followed by an overwhelming desire to analyze this issue, which, I guess, is why I'm a law student!! For the past four years I've been professionally trained to analyze the best points of both sides of an argument. So it got me thinking about the doctors and researchers' side of the story.

For the sake of argument, let's just assume that these studies are right. Let's assume that I actually have a low pain threshold and that most of my "pain" is in my head. Let's assume that I am actually making my own pain worse by catastrophizing my situation. But after making this argument in favor of the studies, I ran into three sets of questions that I was unable to answer:

First, if most of my RA pain is in my head and I am making it worse by catastrophizing my situation, how do you explain the sudden onset of this way of thinking? A year and a half ago I was an overachieving dual degree graduate student who also worked two jobs and played on a water polo team. I knew I could achieve anything I wanted to and I was convinced I was going to change and/or save the world. Suddenly, a doctor utters the diagnosis "RA" and my entire mode of thinking changes? Suddenly I think everything is going wrong for me and giving everything an negative spin? Suddenly my brain decides that exercise and every day tasks are just way more painful than they used to be? How do you explain this sudden onset of low pain threshold and irrational negative thinking?

Secondly, if most of my RA pain is in my head, how does this affect my RA treatment? Why am I being given cancer drugs and extremely expensive biologics if I could lessen my pain just by changing my thinking? Why does my rheumatologist encourage me to ask for vicodin if I think I need it? And why have not one but two of my doctors encouraged me to see a therapist, not to deal with my perceived pain, but to accept my diagnosis and properly grieve over what I have lost? What am I grieving for if it's all in my head?

Lastly, I wonder how the studies take into account the effects of chronic pain? Let's say RA and non-RA both have the "same amount" of pain in their wrists. Non-RA's wrist pain is from an injury (too much tennis?) and it lessens and goes away after a couple of days. RA's pain is from RA, and it doesn't change in intensity or go away. For weeks. Maybe for months. And there doesn't seem to be anything RA can do to help with the pain - the meds aren't working. Isn't it reasonable for the "same amount" of wrist pain to hurt more when it's chronic? Isn't it reasonable for chronic pain to wear you down a little bit?

In the end, I simply don't buy the conclusion that my pain is mostly perceived, rather than actual. And I don't buy the conclusion that I am making my situation look worse than it actually is. I will certainly admit to having some negative days in the past year and a half. But, overall, I think I've been pretty optimistic about adjusting to my life with RA.

After all, if you look in my "Topics" sidebar you'll see that I have 54 posts labeled "Discouraged Days" and 48 posts where I complain about different kinds of pain. But I have 94 posts labeled "Optimism," 17 posts about laughter, 17 posts about hope I've gained from strangers, and 46 points about my amazing family. And the title of this blog is "From This Point. Forward." As I claimed in my first blog post ever, I'm looking forward. I'm adapting to RA and living my life. I can still achieve anything I set my mind to.

That doesn't look like a catastrophe to me.

Wednesday, February 17, 2010

Deja Vu?

Pretty much the moment we got home from humid Australia to dry Colorado, my lip split and blood got all over the pillowcase. Awesome.

Now, a month later, no matter what I do, it still will not heal.

Why does this feel so familiar? Oh yeah.

Monday, February 15, 2010

Giggles

As a law student, I have hundreds upon hundreds of pages of reading to get through every week. And it's nothing like reading hundreds of pages of a novel. Law casebooks are difficult to slog through - full of Supreme Court cases and treatises and things you'd never read for pleasure unless you're insane.

Since I really hate going back to these 50 pound monsters over and over again, my technique is to read really carefully and take really detailed notes the first time through. While this is great when it comes to studying at the end of the semester, it makes the reading go a lot slower and results in a lot of typing during the semester, which isn't always easy for me.

That's why I'm pretty much in love with my dictation software - MacSpeech Dictate. While I read, I wear a little headset and just speak the notes I want to take out loud. Then the software types the notes for me. It is awesome. I actually wish I had used dictation software in law school before I got RA - it would have saved me so much time!!

But while the dictation software is awesome, it is not, however, perfect. Sometimes it doesn't quite hear you or it misunderstands what you said. This can be pretty amusing. Yesterday, while I was reading for Environmental Law & Regulation, I was working through a section on toxics regulation and de minimis risk, which basically means risk too small to be worth spending limited regulatory funds on. Not too exciting. So I was pretty amused when I went back through my reading notes for this section and found this gem:

The regulated community has promoted the notion that regulators should recognize the concept of penis risk in establishing health-based standards.
Made me giggle.

Friday, February 12, 2010

Doctor #2: Good News and Not So Good News

After an extremely long week, I'm finally getting around to writing about the rest of my "Day of Doctors" on Tuesday. I had a pretty rough morning, followed by an appointment with my primary care physician where we attempted to deal with the problem of my high blood pressure - which has been a consistent problem for nine months and is still not under control. So, needless to say, I was pretty exhausted by the time APL and I even made it to my rheumatologist's office on Tuesday afternoon. Note to self: while it seems like a good idea to get it all over with at once, maybe two doctor's appointments on the same day is not the best idea? Just a thought.

Doctor #2: Good News and Not So Good News

I feel like my appointment with my rheumatologist resulted in good news and not so good news. To start with, I have to say that I am really lucky that I like that I like my rheumatologist. I trust him and I feel like he gives it to me straight. He is honest, he doesn't sugar coat it, but always he listens to my concerns and takes his time with me. And, after seeing him for a year and a half, I feel like he has a pretty good idea of what I'm going through.

The good news is that he thinks my RA is under "fair control." After examining my joints he said he thought they looked pretty good - certainly in better shape than when he first started seeing me. So I guess that's a good thing that the expert thinks my joints are looking pretty good.

Also, since I trust him and feel like he understands me pretty well, I asked him for some advice for getting other doctors to understand my pain threshold and better evaluate the amount of pain I am in so that my positive attitude doesn't backfire on me anymore. He gave me what I think is some very good advice - to describe my pain in terms of the amount of pain killers I have to take and the things that are difficult to do. For example, I can say that I am prescribed vicodin for pain on a regular basis, and while it helps sometimes it isn't enough. And I can say that the pain sometimes distracts me from paying attention in class or keeps me from going out to dinner. In my rheumatologist's experience, this is an effective way of making pain more understandable. So that was really helpful.

He also totally understood how much I dislike the side effects of prednisone and we agreed that we should wean me off of it. So I'll be taking 2.5 mg of prednisone for the next 10 days and then I'll discontinue it completely. He warned me that it will be the true test of whether or not the ENBREL is actually the complete solution for me. If it is, I'll probably feel fine without the prednisone. But if it isn't, I'll probably start swelling and being in a lot more pain than usual. And if my symptoms worsen dramatically over the next few weeks, he said to give him a call and he would fit me in even if his receptionist tells me he has no time, which was pretty awesome. In that case, we'll move on to another biologic - he says he thinks the new RA drug, Actemra, has had really good results. So as far as that goes, I guess we'll just have to wait and see what happens when I stop taking the prednisone every day. While I'm not looking forward to potential pain from discontinuing the prednisone, I'll certainly be happy to (hopefully!) say goodbye to the fat face.

However, the rheumatologist also gave me what felt like less than good news. Unfortunately, he doesn't quite understand why I've been having so much pain in my hips. He said it was pretty unusual for RA to present with hip pain - that hips are usually not affected when the rest of the joints are doing ok - so that my hip pain was probably unrelated to RA. Based on what has happened to my knee - patellar subluxation - he thinks I might also have something called hypermobility syndrome. While I'm not obviously double jointed, people with hypermobility syndrome have increased flexibility where their joints may be easily injured, they may be more prone to joint dislocation (ahem, my stupid knee popping when I did nothing more than sit down at a desk), and they may also develop problems with muscle fatigue - which may be what's going on with my hips. So I have to admit that I am less than delighted at the thought of additional problems with my joints. For now we're going to keep an eye on the pain in my hips and consider x-rays to rule out RA joint destruction if my hip pain continues. So the hips have also become a waiting game.

The other sort of icky news was that my rheumatologist also told me he was a little worried about how I was mentally dealing with all the adjustments I've had to make. Granted, after the argument I had with APL in the morning, my first doctor's appointment that day, and the rough physical therapy appointment I had on Monday, I was not in particularly good shape by the time I made it to my rheumatologist's office on Tuesday afternoon. Not going to lie - I was basically crying while we talked to him. So, just as my primary care physician recommended, my rheumatologsit said maybe I should pursue some therapy.

And maybe they are right. I mean, if two doctors separately tell you the same thing on the same day, I guess you have to give some credit to that opinion. But, at the same time, I do think I've come a really long way in the past year and a half. For the most part, I think I've done a really good job of accepting these changes into my life and embracing my new path. At least I feel that way most of the time. So it was sort of discouraging to hear both of my doctor's say they were worried that I hadn't accepted the RA. Not going to lie, this did cause some good crying at the end of that day over how frustrated I feel about everything I have been through not being obvious to the rest of the world.

But APL was there to hold my hand as I cried while he drove me home. And when we got home, we spent a good half hour just laying on the floor, snuggling with River, which brought a smile to my face despite the tears. And, even though I know I have come a long way, I guess there's nothing wrong with asking for a little more help.

I guess we'll just have to wait and see what happens.

Tuesday, February 9, 2010

Doctor #1: Blood Pressure Blues

Today has been a very long and very difficult day. I'm beyond exhausted but I just can't seem to settle down. So I thought I'd try writing a bit.

This morning started off crummy when I woke up in a lot of pain and proceeded to get straight into an argument with APL. Luckily, APL and I found some time to share some coffee and talk things over after class. And then APL drove me to all of my doctors appointments today, picked up my new prescriptions from the pharmacy, and helped me talk to my rheumatologist even though he isn't feeling well today either. I am marrying a wonderful man who loves me and takes care of me even when he isn't feeling well himself. So I'm going to have to try to remind myself how wonderful he is whenever I start feeling frustrated for unfair reasons.

Doctor #1: Blood Pressure Blues

My first appointment today was with my primary care physician about my blood pressure. A lot of related things contribute to my high blood pressure problem. For one thing, I've gained weight just from being a lot less active than I used to be. And it is hard to exercise when my everything hurts, and it is hard to get motivated in the first place when you are fatigued. It's also been particularly difficult to exercise since I dislocated my kneecap. But on top of that is the prednisone, which I am on as part of my RA treatment. Prednisone raises my blood pressure by itself and makes me gain even more weight which raises my blood pressure even more! But I'm on the prednisone to help with the joint pain to help me feel well enough to exercise! This whole situation is some sort of horrific negative feedback cycle that I feel like there is no way for me to win.

By going back through my blog archives I just realized that I have been seeing my doctor once or twice a month for my blood pressure since JUNE. That means we've been trying to get my blood pressure under control for NINE months. Since then I've been on at least four different blood pressure medications - including the one that gave me a hacking cough. I've diligently gone and had my blood drawn by Favorite Lab Man whenever ordered to do so. I've tried to limit my salt intake, I've done my best to exercise despite general joint and more recent knee pain. In fact, I've been really proud of myself this week for riding the stationary bike for thirty minutes every day, despite the knee pain.

But none of this seems to be helping my blood pressure. So today my doctor added yet another blood pressure medication to my cocktail. She says this one might make me pee a lot (great) and that I now have to get my potassium tested weekly to make sure it isn't being negatively affected. So lets just add another needle to my weekly needle count. At least I'll get to visit with Favorite Lab Man again next week. He was super sweet to me today, especially since he just drew blood for me last Friday for my rheumatologist. What can I say? I'm a regular.

I guess the doctors and I are doing everything we can to try to fix my blood pressure problem. And I guess it just takes patience and time to figure out how to make all these conflicting factors point in the right direction. But I have to admit that it is a little bit frustrating to keep going to see the doctor and still having high blood pressure over and over and over again. We've made basically no progress in nine months of trying to fix this. And that is more than a little discouraging.

However, while I would ordinarily do my best to stay positive and act patient about this process, today I discovered that acting discouraged and upset and showing my frustration with my body and this process actually got me more help from the doctor. It got me a referral to the see nutritionist, which I think will probably be a good thing. Maybe the nutritionist will be able to help me do a better job at avoiding salt, which would help with my blood pressure, and figuring out how to eat to help me loose weight since my exercising options are a bit limited, particularly with my knee right now. And loosing some weight should, in turn, also help with the blood pressure. So I think this is a good step forward.

Acting discouraged and frustrated was also met by the doctor with some concern as to how I was coping with everything. She said it must be particularly hard for someone as young as me to cope with this many changes and she knew it was a difficult process of adapting to the changes. She told me I ought to consider seeing a therapist to have someone to talk to about adapting to a chronic illness and dealing with chronic pain. I have already tried therapy about a year ago and didn't feel I gained much from it. But, considering I'm still dealing with a lot of the same issues, maybe I'll try it again. And in any event, at least to doctor recognized that I'm going through a lot and dealing with all of this is difficult for me and offered me a source of help.

There's no getting around the truth of what happened today: acting miserable got me better options for care and help. Which is good to know. The only problem was that acting miserable actually made me feel miserable. So it's an interesting dilemma that I'll have to spend some time figuring out how to deal with someday.

::sigh:: After getting through all of that, I think I feel sufficiently exhausted and settled to go to bed. But stay tuned tomorrow for the exciting conclusion!!! Or something. Doctor #2: Good News and Not So Good News. As Usual.

I Make No Sense

I woke up this morning with another rotten headache and lots of pain in my knee. Needless to say: grumpy. And I showed up to class trying not to cry after APL and I had an argument in the car on the way to school. I know APL probably won't be pleased that I'm totally airing our argument on the interwebs, but I hope he - and anyone else reading this - understands that I'm not doing this to vindicate "my side." I'm doing this to try to understand my own feelings, which are very confusing. And if they are confusing to me, I don't see how I can expect APL to understand them unless I figure out how to explain them. So here goes:

The argument started when APL told me he had just gotten off the phone with a client who was annoyed with him for canceling their consulting appointment this afternoon. I asked him why he canceled. He said he didn't feel it was appropriate to show up to an appointment looking and sounding so sick and that he didn't want to get anyone else sick. I said that I didn't think he really looked or sounded sick and that he obviously didn't think he was contagious as he's been sleeping next to his fiance with the compromised immune system every night. I pretty much said that he could suck it up and go to the appointment.

Thirty seconds later I regretted this comment and tried to apologize. I said I was sorry and that I really didn't mean to belittle him not feeling well. He said I was actually trying to belittle his pain. This is how the argument started.

The background here is that APL is very rarely sick. He feels good most of the time. So when he feels bad, he feels really bad. The smallest sickness affects him like a ton of bricks. He feels icky and grumpy and it makes it really hard for him to get on with his day. But part of the confusion is that I think that APL has every right to act this way. When you feel sick, you feel sick. When you feel icky, you have every right to be grumpy. And I just hate the thought of him not feeling well. I love APL with all my heart and I just want to be able to take care of him when he doesn't feel well; cover him in blankets and bring him soup until he feels better. It sucks to feel sick.

But...but at the same time, when APL is sick I can't seem to smother a growing feeling of frustration at the unfairness of the cards I've been dealt. While it is perfectly acceptable for APL to skip work and stay home watching cartoons because of a sore throat, I regularly wake up with 12 kinds of pain but I have no choice other than to continue functioning on a daily basis as if nothing is wrong. Because if I stayed in bed every time I felt a little bit "icky" I would literally never get out of bed. If I let myself be miserable every time my body hurt I would always be miserable. And that's really no way to live. But even though it's my choice to function normally when I actually feel icky, sometimes I just get overwhelmed about how unfair this seems and how little credit I get for all the effort I put into just getting through a normal day.

I realize that it is particularly unfair for me to feel frustrated when APL feels sick, as he is probably the only person in the world who truly understands the struggle I've had since my diagnosis. He is one of the few people who helps me get by when I have no choice but to function. But...but even though it makes no sense and it's unfair, I still can't smother the frustration I feel when he allows himself to succumb to feeling icky. He's in the unfortunate position of being with me all the time. He's the one I see every day when I get out of bed, no matter how we both feel. And I can't seem to stop myself from feeling the frustration when he continues to feel icky, no matter how much I want to help him feel better.

I tried to explain that this really has nothing to do with him at all. That its really about me and my own frustration with sometimes being unable to accept the position that I am in. He's just the unlucky person in the opposite seat. But he just kept saying that it wasn't a competition and that there is no reason for me to compare my experience to his. Which is what we were arguing about on the way to school this morning.

The thing is, he's completely right. It isn't a competition. And I'm not trying to compare my experience to his, or to anyone else's for that matter. I realize that my experience is fundamentally different from the vast majority of other people. And I love APL and I hate to see him not feeling well and I do want to take care of him and make him feel better.

But that still doesn't make it any easier for me to deal with the frustration I am feeling. I realize that I make no sense. And I'm not sure what to do about it. But I know I don't want to take it out on APL.

Monday, February 8, 2010

NOT ok!

After a long day of class and trying to get around through the snow and slush without slipping and injuring myself still more, I returned to the creepy Oz this afternoon at my physical therapy appointment: more electricity sent through to stimulate the muscles in my knee. The therapist also used two other machines this time: the ultrasound and the infrared. I'm not sure I understand the difference in what all these machines are supposed to do. All I know is they are supposed to help my knee feel better. Though I have to admit that my knee actually felt worse after PT this afternoon. And I'm starting to get a lot more pain in my right hip, which I assume must be related to whatever is going on in my knee.

When I expressed to the therapist that I was experiencing more pain in my knee than I really feel comfortable dealing with (on top of the rest of the pain I deal with on a regular basis) she told me that it would be ok for me to use a cane while walking. I know she only meant temporarily and I know she was just trying to help me. But here's the thing:

I JUST TURNED 27 YEARS OLD!!!
IT IS NOT OK FOR ME TO NEED A CANE!!
NOT OK.
AT ALL.
IN ANY WAY.

Sorry for the shouting. It's just that adjusting to all of the changes in my body since my diagnosis has been really difficult for me - both physically and mentally. And to keep myself sane, I've had to figure out how to laugh at situations that just aren't funny. At all.

But recently I sort of feel like my ability to stay positive is backfiring on me. I've been feeling like my doctors aren't really taking me seriously about the amount of pain I'm in. Or how upset I am about being 27 years old and having RA and being too exhausted to do anything fun and dislocating my knee on top of all of that. Just because I come into the doctor's office trying to smile and stay positive doesn't mean I'm ok. It doesn't mean I'm exaggerating when I say I'm in pain.

Aren't doctors supposed to know that?

Friday, February 5, 2010

Peanut Butter Kisses

I woke up this morning with a rotten headache and lots of pain in my knee, which has caused my calf to cramp up pretty badly as well. As I was struggling to get out of bed, APL brought a package from my sister upstairs and we opened it in bed.

Inside the package was a batch of my favorite homemade cookies - peanut butter with a kiss in the middle! Not that I always advocate eating cookies when you are having trouble getting out of bed, but it certainly helped me this morning!!

Thanks, SZ, for being such a sweet sister!! Love you!!

Pain in the Keyboard

A study was recently completed about RA and computer usage. Patients with longstanding rheumatoid arthritis had their computer skills measured using the Keitel Hand Function Index, which assesses active range of motion. The study sought to discover which variables - impairments in range of motion, impairments in hand function, general activity limitations, or task-specific training - explain the most variance in keyboard and mouse speeds in computer users with rheumatoid arthritis.

Here is one article about the study entitled "RA Patients Maintain Computer Skills." Here is another entitled "Rheumatoid arthritis doesn't hinder computing skills." The title of that second article does not please me. I'd like to invite whoever wrote that title to try typing for three hours straight on a law exam, upon which their whole grade depends, with my RA hands and see if it "doesn't hinder" their computing skills!! (Grrr...) In any event, here is what the study found:
"A recent study by researchers from the University of Pittsburgh found that workers with rheumatoid arthritis (RA) were comparable to non-impaired individuals in keyboarding speed."

"The hand impairment experienced by many patients with rheumatoid arthritis did not significantly interfere with their computer use."

"Keyboarding speeds were found to be comparable with unimpaired workers, suggesting that most of the arthritis patients could be competitive in the job market."
First, I want to make it clear that I am not quite disputing the study itself. In fact, I would like to do everything in my power to encourage studies about RA and how it affects us. And I realize that there are limitations to medical studies. This study utilized 45 computer users with RA from an Arthritis Network Research Registry and tested specific keyboard and mouse tasks, measuring on a known index. If I were a medical researcher trying to figure out the effect RA had on computer use, I would probably start at about the same place.

But I do have some concerns with the conclusions made based on the study:

(1) There doesn't seem to be much acknowledgment in the study that RA affects different people in different ways. The study doesn't seem to recognize that some people with RA don't have hand pain at all. And some people still have RA but go into periods of remission without any pain. So, while I'm glad that those RA patients may not have diminished computer skills, I don't think you can extrapolate to say we all do. Any study about RA ought to recognize that the disease affects different patients in different ways.

I think it would have been useful to know (a) how many of the study participants usually experienced hand or wrist pain from their RA and (b) how many of them were experiencing pain in their hands at the time they took the tests. Just because you can type fine with RA one day doesn't mean you can type fine with RA every day. And what if your bad day is the day that important report is due to your boss? How competitive are you then?

(2) The average duration of RA among study participants was 16.7 years. This seems like a high average to me. Not to discount the pain of someone who has had RA longer, but it seems to me that if you have had RA for more than 10 years, there's a fair chance (hopefully!) that you've found the right meds/treatment for you and you are dealing with a lot less pain. Even if you still have pain, you've still had at least a decade (and for some study participants, two decades) to figure out how to deal with the pain - both physically and emotionally.

But what about the people who were recently diagnosed and/or haven't found the right treatment yet? Maybe I'm biased because I'm still in this category, but it seems to me that these are the people who are most at risk from loosing competitiveness in the workplace. If you've just been diagnosed, haven't found the right meds, are still in a pain, and still trying to adjust to living with RA, it seems to me that you might have more trouble using a computer than someone who has had RA for 16.7 years. But the study doesn't appear to address this issue at all. And sweeping conclusions like "RA doesn't hinder computing skills" makes it difficult for people adjusting to RA to get compassion in the workplace.

(3) My last big complaint is that the study doesn't seem to take pain into account at all. Just because you can type at a certain speed doesn't mean it doesn't hurt to do so!!! People with RA deal with pain all the time and as a result they are very tough. When you have RA, you can't just stop doing something you need to do just because it hurts - otherwise people with RA would never be able to do anything!! For example, I am wearing a brace on my right wrist right now because of pretty severe pain. But I've still spent half an hour typing this post because I'm skilled at ignoring pain. And, if your livelihood depends on it, you may just struggle through the pain a little bit more to keep up. But I don't think that means you should have to. Employers should be more understanding in the case that it hurts to do something, even if you can still do it. But, again, conclusions like "RA doesn't hinder computing skills" doesn't give anyone any incentive to be understanding towards people suffering from RA pain.

So I guess I do have a few concerns about the study itself, but mostly I'm upset about the sweeping conclusions in headlines that have come out of it. Again, those headlines make those of us with RA look like a bunch of whiners.

But we're not. We are tough. We deal with pain every single day. We work really hard to keep up. And we deserve some credit for that.

Thursday, February 4, 2010

Living Life With RA

Recently, the author of the blog Living Life With RA emailed me to say that she has enjoyed reading my blog. Now I've started reading hers and I'd like to return the compliment!

Living Life With RA is a blog that provides information and resources for, well, living life with RA. But its more than health info: she also provides personal stories and anecdotes about her own experiences with RA. For example, she recently got back on the ski slopes, something I'm hoping to be able to do again someday! So you're almost certain to find some hope in the blog as well.

I also love her motto: "Rheumatoid arthritis...a speed bump, not a road block."

Living Life With RA has been added to the RA Resources menu on this blog and I will certainly be following it from this point forward.

Sunshine Award!!

Despite my recent ranting and complaining, I was really pleased this morning to get a note from my cousin that she had given me the Sunshine Award on her blog. Guess I am maintaining my goal to be (more or less) optimistic on this blog! Everyone deserves a rant once and a while, right? ~;o) So thank you, KF, for adding some sunshine to my life today! It's been a bit gray in Boulder and the past two weeks or so have been a bit rough, so it was a nice surprise for me.

The Sunshine Award is one of those blog awards that is perpetuated by its winners. So below is my list of blogs that add a little sunshine to my day. As you can see, my cousin and I have more in common than RA - namely the insane desire to be ridiculously organized. So, as my cousin did, my favorite blogs are broken into categories.

First, and most relevant to this blog, my favorite blogs about RA and adjusting to life with an autoimmune disease:

Rheumatoid Arthritis Warrior
Who, to be fair, helped provoke my rant this week!! ~;o) Like I said, everyone deserves a rant once and a while!!

The Single Gal's Guide to Rheumatoid Arthritis
I discovered this blog through the NYT feature on RA. Lots of her posts leads to features she writes for MyRACentral.com, which is also a great database of RA info.

Jodi McKee Photography
Who's awesome autoimmune portrait project seeks to make invisible autoimmune diseases more visible. If you're ever in Colorado, Jodi, please look me up!!

Living Life with RA

I also thought I'd give a shout-out to a fellow blogger who contacted me recently to tell me that she has enjoyed reading my blog. I have just started reading hers and I like her outlook on RA already!
Second, since getting engaged I have been shamelessly enjoying the gorgeous pictures on the following wedding blogs. I don't usually actually read these blogs, but scrolling through the pictures always adds a little sunshine to my day:
Last, since I'm supposed to give out 12 awards, the rest of these are just for laughs:
I wouldn't recommend clicking any of those links unless you've got some time to kill.


For those of you who received the Sunshine Award from me, passing along the award is obviously optional. Mostly, I just wanted to give you all a shout out for the sunshine, hope, and help you bring to my life. If you do decide to pass the sunshine along, here's the general idea:
  • Put the logo on your blog or within your post.
  • Pass the award onto 12 bloggers.
  • Link the nominees within your post.
  • Let the nominees know they have received this award by commenting on their blog.
  • Share the love and link to the person from whom you received this award

Tuesday, February 2, 2010

The Creepy Oz, Not the Munchkin One

Yesterday I had my first physical therapy appointment to work on my confused kneecap, which thought it might be fun to do its own thing and totally dislocate itself from the rest of my leg last week. Bad kneecap! My dad's theory on my knee's misbehavior is that my muscles are now weak because I've been less active in the past year and a half than ever before in my life. He is probably right, though that is not exactly a happy thought.

After examining my knee and showing me some exercises I should do to work on strengthening the muscles that will keep my bad kneecap in line, it was time for the creepy part. The physical therapist hooked me up to a machine that sent an electrical current through my knee to stimulate the muscle. While I understand the theory behind this (stimulate and strengthen the muscle without me having to distress my already distressed knee joint) let me just say this:

Do. Not. Like!

(1) It is highly creepy to watch your muscles move against your will.
(2) That machine looked like the one from Return to Oz - the creepy Oz, not the munchkin one.

And, after the treatment was over, I still had to wait in the pharmacy for 45 minutes for them to refill and process the payment assistance on my Enbrel, even though I had called the refill in that morning. Needless to say I didn't get home as early as I wanted to and was up later doing homework than I should of been. On top of the physical and emotional exhaustion from traveling to the funeral this weekend, I am now adding the exhaustion of too much work and not enough sleep this week. Plus I got all mad and riled up over that ABC Article instead of doing homework this afternoon, so I have to admit that I am less than a happy camper this evening.

Having a chronic condition is a full time job. Do you think the economy is crappy enough that I could hire someone to do it for me???

Yeah... didn't think so.

Please Try Again, ABC

I'm all about hope and finding ways to lead a full and happy life with my RA, but this article from ABC News almost makes it sound as if I really shouldn't have anything to worry about since I wasn't diagnosed 30 years ago.

Of course new developments and medications are exciting and bring us hope. Of course people suffered a lot more from RA in the past without these developments. But does that mean that RA patients today, particularly the ones still searching for the best treatment regimen (like me), are suffering any less from the pain and fatigue of RA? I don't think so.

To be fair, the article doesn't say new treatments will cure RA patients. It says we will be "much older when joint surgery becomes [our] best option." (Awesome. Now I feel better!) But the article says "today, although disease flares and progression can't be prevented entirely, doctors can now tell patients to expect long periods of remission."

Expect? Though I like to hope, I'm actually grateful my rheumatologist never said that to me. He said I might experience remission - that it was possible, not necessarily probable. And I think this is the mindset that you need to really deal with accepting RA into your life. What if you can't find the right treatment or it takes a long time to find it? You need to be able to get on with your life rather than being miserable until then. I think it is a little bit misleading to tell patients to expect periods of remission - and long ones at that. RA is a disease that never goes away completely, and that's something people with RA simply need to deal with.

The article also talks about a rheumatologist who "tells new patients that they can live normal lives." While it is true that someone with RA can certainly live a "normal" life, the important point to make is that it won't necessarily be the same life they were living before the diagnosis. Changes will certainly be necessary. Likely a lot of changes and probably some that you didn't want to make but don't have any other choice. Leading a patient to believe they can get back to whatever life they had before RA just isn't fair.

Frustratingly, the article also quotes a doctor saying "RA back then was a terrible disease." While I realize that the consequences of the disease were certainly worse "back then," is it really fair to say that the disease itself is any less terrible today? If I haven't found a treatment that takes away my pain and fatigue, am I suffering any less than someone "back then"?

I feel like the tone of the article suggests that RA today just isn't that bad, that you just take the medicine and that makes it easy to deal with, which I feel is misleading. Adjusting to a life with RA is a lot of work, and RA patients need support from their families, friends, the medical community, and from society as a whole. Articles that make RA look like its not that bad make those of us with RA look like a bunch of whiners, which I think can sometimes make people reluctant to offer help. But in reality, most people I know (in life or online) with RA are strong and can deal with a lot - probably more than they should - before they ask for help. Myself included.

Unfortunately, my frustration with ABC and this article grew even more when I saw that the author of one of my favorite RA blogs, RA Warrior, had not one but two of her comments removed from the article by ABC. I have seen Kelly's comments on other articles and she is always respectful, so I thought that was particularly frustrating. Why would they remove the comment of a polite dissenter? Without explanation? That's just disrespectful.

But, the good news is that Kelly and others with RA are doing what they can to teach the world the true story of what RA is like, to encourage people to provide the help and support that we need, and I think that is certainly something to be hopeful about.

::deep breath:: I need to stop feeling so riled up and get back to the mountains of homework I need to accomplish this week. If I can.