Monday, April 14, 2014

Love Your Body

In a strange way, I think my RA pain has taught me just how amazing my body really is. Please don’t get me wrong. I’m not saying that I want this pain or that it is easy to deal with it…but what I am saying is that instead of getting upset and angry at my body for all of the pain, I now try to be more grateful for all the things I can do and any day that I am able to spend without pain, or even with less pain.

Thursday, April 10, 2014

Princess Parade 2014 - Walk to Cure Arthritis

This powerful video was put together by one of the moms I admire most in the world. A mom who has watched her daughter (who turned 16 yesterday!) grow up with arthritis since the age of 3. A mom who has helped me keep going through some of my most heart-wrenching struggles with arthritis.

Please take a minute to watch. Please take a minute share. Please do whatever you are able to help us find a cure for arthritis.

Wednesday, April 9, 2014

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.

Monday, April 7, 2014

Research For A Cure: Update from The National Institute of Health

An update on the current research being performed by the National Institute of Health and National Institute of Arthritis and Musculoskeletal and Skin Diseases to search for treatments and, more importantly, a cure for arthritis.

Saturday, March 29, 2014

A Fun Announcement!!

OZL is getting a baby brother this summer!



The Changing Face of Arthritis

We did a little photo shoot this morning to update my blog profile picture - to show how much OZL has grown and also to show off my baby bump! I thought it would be fun to share my last few profile pictures all in one place so you can see the changing face of arthritis!

October 2012; OZL 4 months old

April 2013; OZL 11 months old

 March 2014; OZL 22 months; 22 weeks pregnant

And one more just for fun...

Making Biologic Medications Accessible And Affordable

While I was excited to try the medication my rheumatologist suggested, I was shocked to discover that I would need to pay nearly $1,000 a month out of pocket! Learn more about my efforts to support The Patients’ Access to Treatments Act - legislation that makes medications more accessible & affordable. And find out what you can do to help!

Thursday, March 27, 2014

The 2014 Arthritis Foundation Advocacy Summit

We just got home from a whirlwind trip to Washington DC, where our family participated in the 2014 Arthritis Foundation Advocacy Summit. As part of the conference we were able to meet with the offices of our Senators and Representatives to talk about some very important arthritis advocacy goals. 

So that I can reach a wider audience (which will only help us continue to make a difference on these important issues) I will primarily be sharing my experiences from the trip over at RheumatoidArthritis.net - so stay tuned for links! But in the meantime, here are some photos from our trip! 






 


Friday, March 14, 2014

The RA Pregnancy Chronicles: Life Without RA Medications

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 6 of my second pregnancy.

Being a parent is all about sacrificing your own needs for the needs of your children. It’s a challenge that every parent faces. But, for those of us living with chronic illnesses like RA, there are all sorts of extra sacrifices, difficulties, and doubts we have to face.

Thursday, March 13, 2014

The Lego Movie

As I mentioned in my last post, APL recently accepted a new job. On Tuesday he had training for his new job - but it only lasted half a day so he was done with work by noon. OZL was at school, and even though the purpose of sending him to school twice a week is so that I can write, my contract with Answers.com recently ended and I have not found additional writing work to replace it yet.

So on Tuesday my husband and I found ourselves with an unexpectedly glorious afternoon to spend together with no work to do and no toddler to take care of. And what did we decide to do with our limited grownup time together? We went to see an awesome children's movie!

We both enjoyed The Lego Movie very much - and I'm positive that APL is already counting the seconds until OZL is old enough to truly appreciate the wonderfulness of legos. (Sadly, at 21 months, even duplos are still a bit too advanced for OZL to put together and they do not hold his attention for very long. But as soon as he is ready all the duplos me and my brother and sister ever owned are sitting in our basement playspace!) The movie was very fun, extremely clever, and had some really lovely messages.

After just having seen The Lego Movie, I was even more excited to see this post from a blog called RARainbow (a resource blog for young women living with (Juvenile) Rheumatoid Arthritis). She makes some really good observations about the movie and how it applies to life with a chronic illness. As she points out, in life (as in legos) "the possibilities to create are infinite."