Monday, May 16, 2011

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!

Sunday, May 15, 2011

Cheered Me Right Up!!

We woke up this morning and it's rain-snowing, so not the most delightful day for the Denver Arthritis Walk. But guess what? It doesn't really matter if it's raining or snowing - I still have RA, so we're going!!

But as we were bundling up, I'm really glad that I got to see these pictures from the Arthritis Walk in Baltimore, MD yesterday. The pictures are of APL's brother AML (his best man) and his awesome girlfriend MK. Their team was called "Walking for Mariah Because She's Walking Down the Aisle."

Cheered me right up! ~;o)

Thanks so much guys - you have no idea how much I needed that support right now. It means so much to me.

Warm Enbrel is a Bad Thing

I have a confession to make: I am so scared about how my body is going to feel on my wedding day.

I had a minor breakdown about it this afternoon. Since APL and I are planning the entire wedding ourselves, we each have a list a mile long of things to finish, vendors to check in with, and guests to follow up with. We spent the afternoon at home, each working on our own lists. But Saturday is also Enbrel day, so at some point I asked APL to take an Enbrel out of the fridge for me. He did, but then we both got wrapped up in wedding stuff and forgot about it. Several hours later I discovered a warm Enbrel sitting on the counter top. 

Warm Enbrel is a bad thing. Enbrel is supposed to stay refrigerated until you take it. Usually I let it warm up for about 10 minutes, but only so the injection doesn't sting as bad when it goes in. It is still supposed to be cold when you inject it. And, from previous experiences, I know that Enbrel is a lot less effective if you leave it out too long before injecting. 

When I realized we had ruined the dose, I was extremely upset. The last thing I need right now is for my RA meds to be less effective. But, because Enbrel costs at least $400 per injection and is really complicated to get from my health insurance, it wasn't like I could just throw that dose out and take a good one instead. I had to take it and cross my fingers that it will be enough to keep me going.

I was so mad. At first I was furious at APL, because I felt like it was his responsibility to remind me to take the dose, since he was the one who actually took the precious medicine out of the fridge. My first reaction was to blame him for the whole thing, honestly because it felt better not to have to take responsibility for such a stupid error. But the reality is that it is my RA and my medicine and my body that is potentially going to suffer and, thus, my fault. So then I got furious at myself for blaming APL and for being so stupid at a time when I ought to be extra careful.

It doesn't help that I already have all kinds of fear and guilt and anger associated with how my body might feel on the wedding day. I'm literally scared that it will hurt to walk down the aisle or have my first dance with my husband. I'm scared it will hurt when people hug me or that I simply won't have the energy to get through the day. And then I feel super guilty that after a year and a half of planning and all kinds of money and 150 friends and family flying in from all over the country, it's possible that I might rather sit down - or worse lay down - than enjoy the party. And I know nobody would blame me if I had to, but that's where the anger comes in. I don't want it to be ok for me to not feel good at my own wedding!! Because that's just f@%&ed up.

Ultimately I know that worrying and stressing about how my body might possibly feel on the wedding day is totally counter-productive. I know I just need to rest as much as possible, do my best at taking care of myself, and try to relax - and everything beyond that is totally out of my control anyways. I know that having a pity party for myself isn't helping me at all. And I'm going to snap out of it and move on with as positive an attitude as I can muster.

But, at the same time, the end of this month marks my three year anniversary of living with RA. And, after three of the absolute roughest years of my life, all I want is one day of feeling ok enough to enjoy myself. I'm not even asking for feeling good!! I just want to feel more or less ok!!

And I'm angry that somehow that seems like it might be too much to ask. 

Tuesday, May 10, 2011


I think I have a low grade fever - I've been both freezing and overheating all afternoon and all evening. I don't think I feel quite as horrible as the cartoon fish pictured here, but I'm worried that I might be headed in that direction.

The situation really doesn't thrill me - especially considering all the work work and honeymoon packing and wedding project finishing I have to do before I leave next week to drive to California for my wedding.

So, despite the fact that my achy joints clearly need some help as well, I've cancelled pilates for tomorrow so that I can try to get some extra sleep and I've emailed the office to let them know I won't be coming in.

I know exactly how important it is right now to slow down.

Still sucks though.

Monday, May 9, 2011

From The Desk of Captain Obvious

Discovered this delightful article today: Arthritis May Degrade Quality of Life. Hahahaha!! Really, Captain Obvious? You needed a study to determine that? 

Apparently they did:
People who have arthritis may have fewer days of feeling mentally and physically well and are more likely to feel generally unwell, according to a new study published in Arthritis Care & Research.
I know I've been all about increasing awareness lately, but is this really the best we can do?? People with arthritis...don't feel well?? Really?!?! How does a study like this even get funded!!

The article seemed so pointlessly obvious to me that I almost didn't read the whole thing. But I'm really glad I did, because on the second page I discovered this gem:
The authors also found that people with arthritis who admitted to frequent heavy drinking were less likely than non-drinkers to rate their health as fair or poor, and reported fewer physically unhealthy days. 
Hahahahaha!!! So if I have vodka for dinner I will be less likely to rate my health as poor or feel physically unhealthy?? Stupendous! 

Ok, ok - to be fair the study was quick to disclaim that heavy drinking is not recommended. But come on!! First you give me this terribly depressing headline about the degraded quality of my life, then you tell me that you have evidence that I will literally feel better if I drink heavily a little more often, but then you tell me it's not healthy to drink heavily even if it will make me feel more healthy?!?

What exactly is it that we've learned here, people?

Tuesday, May 3, 2011

Jordan and Her Mom

I really do love the interwebs!! In real life, I haven't had too many opportunities to actually meet and talk to people dealing with arthritis or other autoimmune conditions. But, thanks to the magic of the internet, I have "met" dozens of interesting and uplifting people who have helped me on my journey since my diagnosis.

Today I "met" two more - a mother with autoimmune arthritis and her daughter, Jordan, who has JRA. Mom keeps a blog called Living Life AutoImmune, where she talks about her own experiences with arthritis as well as her life as a mom to a child with JRA. Recently she posted a great video of Jordan's "Remicade Day."

Sometimes people say things to me like "now is such a great time to have RA" or "with modern medicine you can live a normal life," but I don't think those people realize that even if you are lucky enough to find a medicine that works, the mere process of dealing with it can still have a huge impact on your life. I think the video does an amazing job of giving the viewer a tiny taste of how much arthritis sufferers go through to manage their diseases. With the permission of Jordan and her mom, I want to share it with you here:

Like me, both Jordan and her mom are fighting to raise awareness that there are multiple forms of arthritis that can affect anyone. Her mom told me that one of Jordan's goals in life is to raise awareness about autoimmune arthritis. I think she is doing a great job so far, because in addition to sharing her story through videos and her mom's blog, Jordan has started her own blog, even though she is only eight years old!! Her blog is called Warrior for JRA and I recommend that you check it out!

15 Things Not to Say to Someone With RA

A friend recently sent me a great article - "15 Things Not to Say to Someone With RA." 

Sadly, I'm pretty sure all 15 things have actually been said to me at one time or another - and generally not by strangers but by well-meaning friends and co-workers. On a good day, these thoughtless comments don't bother me at all, and I'm happy to ignore them or correct the person's understanding of RA (after all, I'm all about promoting awareness). But on a bad day,  when I'm already feeling exhausted and frustrated, statements like these can  be really hurtful. 

For that reason, I would like everyone I know - and everyone I may ever possibly meet - to read this article. Is that too much to ask? ~;o)

Here are the 15 things:
  1. Those drugs are too dangerous.
  2. My grandmother has it.
  3. You need to exercise more.
  4. Aren't you feeling better yet?
  5. Have you tried glucosamine?
  6. Maybe you need an antidepressant. 
  7. But you look fine.
  8. You take too much medicine.
  9. You need to change your diet.
  10. It's all in your head. 
  11. Losing weight might help.
  12. You're too young to have arthritis. 
  13. Now's the best time to have RA.
  14. Let me know if I can do anything.
  15. I know someone with RA and they have it worse than you.
 UPDATE: As suggested by one of my readers, here's another good one:

   16. Do you still have it?

Monday, May 2, 2011

Foundation Frustration

I think the Arthritis Foundation does amazing work for people dealing with all types of arthritis - and their families! - and I am actively trying to get involved with their work. I am also a fan of the Arthritis Foundation on Facebook, and so I was delighted to see in my news feed this morning that May is "Arthritis Awareness Month."

However, I have to admit to being a little frustrated and disappointed when I clicked on the Arthritis Awareness Month link. The vast majority of the information provided on the site is about osteoarthritis (OA). I do recognize that the vast majority of people dealing with arthritis are likely dealing with OA, and I'm guessing that the majority of the Arthritis Foundation's budget is also focused around OA. So I am not trying to downplay the seriousness of OA or the need to address OA in any way. 

However, what bothers me is the title of the campaign. The title isn't "Osteoarthritis Awareness Month" - it's "Arthritis Awareness Month." And it seems to me that a campaign about arthritis awareness is the perfect opportunity to promote awareness that there are lots of different types of arthritis. I also think it would be important to address the fact that other types of arthritis may need to be addressed and treated differently than OA. Sadly, the campaign website is almost exclusively about OA, which is pretty much the exact same complaint I had about the Arthritis Awareness Month campaign last year.

The main campaign page says nothing about the fact that there is more than one type of arthritis. If you click on 10 Facts About Arthritis, there is a slight mention of the fact, but it is pretty brief:
3. There are over 100 forms of arthritis, including little talked about diseases like Kawasaki disease, which involves inflammation of the blood vessels, and Sweet's syndrome, which is a skin condition marked by fever and painful skin lesions.
A couple of the other "facts" mention "rheumatic conditions," "JA," and "JRA." A few of the other links have secondary menus on the left-hand side that you could follow to get to information about other types of arthritis - such as RA or JA.

But there is nothing obviously available on the main campaign page that address the important fact that people suffer from many different kinds of arthritis. To me, this seems like a pretty big failure for a campaign that is supposed to be about increasing awareness about arthritis. 

Which is really a shame, because if there is anyone living with arthritis who could sincerely benefit from increased awareness about different types of this disease, it's those of us forced to deal with arthritis at a young age. Because I can almost guarantee you that all of us have had someone (or many someones) tell us that we are too young to have arthritis. And what's the solution to that? Awareness.

Sunday, May 1, 2011

Long Skirts!

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