Tuesday, April 22, 2014

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!!)

Monday, April 21, 2014

I'm In The AForum Newsletter!

This morning when I checked my email, I was quite surprised to see a picture of myself in the AForum newsletter! Of course I had given the Arthritis Foundation permission to use my picture and story in the newsletter - but I guess my pregnant brain forgot all about it!

In any event, you can check out my Summit Profile here!!

Thursday, April 17, 2014

The RA Pregnancy Chronicles: Morning Sickness and Other Unpleasantness

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 9 of my second pregnancy. 

Life with RA can sometimes feel like a constant Catch-22, a paradoxical set of circumstances where you find yourself forced to make a decision where it feels like you lose no matter what option you choose...In a strange way, I think these experiences make women with RA uniquely qualified to deal with the completely bizarre things that happen to your body while you are pregnant.



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!