Friday, November 21, 2014

The Joint Decisions Empowerment Summit*

Last weekend I kissed my babies goodbye, wished APL luck, and flew to Boston for the Joint Decisions Empowerment Summit.* The summit was an amazing opportunity to meet other RA bloggers face-to-face, including three other members of my RheumatoidArthritis.net team (Leslie, Angela, and Carla). Many of these people are the authors of blogs that I have been following for years, so it felt sort of like a chance to meet some of my favorite celebrities! I got to meet:
  • Rheumatoid Arthritis Guy - one of the first RA bloggers I discovered when I started my own blogging journey over six years ago. A real superhero come to life!
  • Wren of Rheumablog - who, in addition to her own journey with RA, has been following my blog and leaving me loving and supportive comments for years. So amazing to meet her in person!
  • Spoonless Momma - another mama battling to have her family despite living with RA.
  • Leslie from Getting Closer to Myself - diagnosed with lupus and RA while working towards her PhD, who now advocates for students living with autoimmune conditions
  • Angela from Inflamed: Living with Rheumatoid Arthritis - who was diagnosed with RA just out of high school but hasn't let RA stop her from pursuing her passions 
  • Carla from Carla's Corner - who was actually diagnosed the very same month I was, but has already lived through hip, shoulder, and knee replacement surgeries
  • Britt from The Hurt Blogger - who has been living with arthritis since she was a child and whose online advocacy efforts have been very inspiring to me
  • Dina the Titanium Triathlete - a triathlete who doesn't let RA or her two total hip replacements stop her
  • Amanda of All Flared Up - diagnosed with RA four years ago but not letting it change her outlook on life
  • Cathy of The Life And Adventures of Cateepoo - another mama working to make the best life for her kids despite her RA
On the other side of the coin, it was totally bizarre to meet "strangers" who already knew so many intimate details about my life! Of course I know that when I blog I am purposely sharing the details of my life with the world, and I do often email or talk on Facebook with people who read my blog, but I haven't had very many opportunities to meet these folks in person. So it was strange - but also kind of wonderful - to meet people who I know understand what I am going through. 

The first day of the Summit we shared our patient stories, and even though I was familiar with many of them through their blogs it was actually very powerful to hear these stories in person. The level of understanding and determination shared between everyone in the room was very uplifting and inspiring for me. 

The second day of the Summit we were able to give some feedback about Joint Decisions, a webinar which is the collaborative effort of CreakyJoints and Janssen Biotech. Although these live webinars (and the subsequent recordings) are already great resources for people living with RA, it was great to be able to provide some feedback to help improve the series going forward. There's still one more webinar scheduled for January 14th called "Right Track RA: Helpful Tips for Continued Success in the New Year." (Register here if you are interested in joining!)

Though it was an extremely busy weekend of traveling (a week later I feel like I am still recovering!) it was a very positive and inspiring experience for me and I'm very glad I got to be a part of it. And though it was also a really nice break from my babies, I sure was happy to see all my boys when I got home!

*Janssen Biotech paid for my travel expenses for the summit. All thoughts and opinions expressed here are my own.



Wednesday, November 19, 2014

Back To Square One. Again.

It has probably happened to everyone who has ever been diagnosed with RA. One day you start to notice that your medications don’t seem to be helping as much as they used to.

Monday, November 10, 2014

The Power of Chemo

After hearing I had to take a chemo drug, my friends almost universally reacted as if my RA was much more serious.

Monday, November 3, 2014

How Vaccinations Affect My Family

I've been reluctant to write about such a hot button topic, but it's also an issue that is extremely relevant to the members of this community. So I’m going to go ahead and discuss it: vaccinations.

Monday, October 27, 2014

Two-Year-Old Cures

A conversation that I had after picking OZL up from preschool today:
OZL: Can we go to the playground, please?

Me: Not today, buddy. Mommy doesn't feel so good.

OZL: Oh...did somebody bite you?

Me: No. I had to take some medicine and it made me feel a little bit sick.

OZL: Did you spit it out? Was it gross?

Me: Yeah. It was gross.

OZL: I will give you a hug. And I will play with you. Then you will be happy.
Yeah, little man, that sure did help!

Methotrexate: The Results - Day 2

Unfortunately, I'm still feeling horribly nauseous this morning. While I did remember that methotrexate has the potential to cause nausea (though I don't feel like it really did last time?) I couldn't quite remember what I am supposed to do about it. I emailed my rheumatologist, but he hasn't responded yet. So this prompted me to take a highly unrecommended action - I googled it.

Turns out methotrexate makes you feel nauseous not by irritating your stomach but by stimulating a receptor in the brain that causes nausea. And what can be done about it? (1) Take a folic acid supplement. (2) Ask your doctor for a prescription for zofran. 

So.....It's like being first trimester pregnant. Forever?

All I can say is that I hope after a few doses the benefits begin to outweigh this nasty side effect. Because right now all I can think is: I made the horribly difficult decision to stop breastfeeding my baby....for this?!?! 

I feel pretty discouraged right now.


Sunday, October 26, 2014

Methotrexate: The Results

Dear Chemo Drugs:

You are worse than I remember.

Love,

~An Exhausted and Nauseous Mother

Saturday, October 25, 2014

Methotrexate

Just took my first dose of methotrexate in four years. Wish me luck!!

Tuesday, October 21, 2014

Time To Wean

I swear it feels like just yesterday that CZL was born, but little CZL isn't quite so little anymore! He weighs more than 14 lbs and he is almost three months old! CZL is a beautiful, happy little baby and his big brother OZL completely adores him. We are a very happy little family!

But, unfortunately (but not unexpectedly) I am not doing so well. Despite the fact that I am currently taking Enbrel and prednisone, my RA is flaring. Badly. And I am struggling every day with extreme fatigue (being up for CZL in the middle of the night is not helping) and terrible pain, especially in my hands and wrists (which makes literally everything baby-related painful to accomplish). Just like last time, I know it's time. It's time to wean.

But that doesn't really make it any easier.

I have so many mixed emotions right now that I'm not really even sure where to start. First of all, I guess I have to admit to being somewhat surprised over just how emotional I feel about weaning the second time around. I have grieved over a lot of things that RA has taken away from me - my active lifestyle, my career aspirations, the ability to hop out of bed in the morning feeling great...and breastfeeding. I really thought I had already grieved over losing breastfeeding when I weaned OZL. But somehow I find myself grieving all over again. Especially since this has been an incredibly easy nursing experience - CZL has a great latch, I didn't deal with any cracked or bleeding nipples this time, and my milk supply has been fantastic. But even though I absolutely knew this day was coming - and I know from my own experience how much more there is to motherhood after breastfeeding - I still find myself feeling unimaginably sad about weaning CZL.

And I'm honestly struggling a little bit with the fact that this may be the last time I ever breastfeed a baby. We knew that we wanted OZL to have a sibling, so even though I was sad to wean OZL I knew that I would have another chance someday. This time I'm not so sure. I always thought I wanted three kids, but I'm not sure how realistic that is for us. This past pregnancy was extremely difficult for me, and I'm honestly not sure whether I would be able to survive another one. We aren't making that decision anytime soon - I'm going to get my RA fully treated and then we will wait a few years and see how we feel - but it is possible that CZL could be my last baby. And that does make weaning just a little bit harder.

I also have to admit to feeling a little bit disappointed. I stopped nursing OZL so that I could start taking Enbrel again, but with CZL I was forced to start back on Enbrel during my third trimester. So, since he was already exposed to the medication (and the information on safety is better than it was two years ago) I made the decision to stay on Enbrel while nursing CZL. So I think, in the back of my mind, I thought I might actually be able to nurse CZL a little longer than I made it last time since my RA would theoretically be better treated. But, in reality, I think my body is just worn out from dealing with RA that has not been fully treated for four years. Despite being on more meds than I was last time, I am actually struggling just to make it to the three month mark. And that is a bit disappointing.

And then there's some complicated emotions that, although they have to do with stopping breastfeeding, actually have nothing to do with my baby. Like I mentioned above, it has been four years since my RA has been completely treated. I stopped taking methotrexate six months before APL and I got married so that we could start trying for a baby right away. It took us four months to conceive and then I was off Enbrel for a year while I was pregnant and nursing OZL for three months. Then, because we knew we wanted our kids to be close in age, I never went back on the methotrexate at all due to the amount of time it takes to start working + the amount of time it takes to get out of your system. It just wasn't worth it to go back on between kids. And while the Enbrel does help it has never been enough all by itself to control my RA. So, to reduce the overall amount of time I would spend with partially treated RA, we started trying for our second as soon as OZL turned one. But this time it took us 8 months to conceive. And then I was off Enbrel again until my third trimester. And though I am back on the Enbrel now, I'm still having a hard time. Because, all together, it has been four years that I have been living with untreated or partially treated RA. And I think my body is just completely worn out.

But once I am finished nursing CZL, I will have the whole wide world of RA medications available to me. My body will be my own once again and I can do whatever it takes to get me feeling as good as possible. And I am honestly excited about the possibility of feeling better than I have felt in a long, long time. Most of me believes that I will be feeling lots better soon, and I'm excited to have extra energy to be a better mom to my boys.

But there's also a part of me that's a little bit scared.

It feels a bit like going back to square one. When I was first diagnosed, it took a long time to figure out what my "new normal" was going to look like - and even longer for me to accept that "normal" and learn to be happy again. And I have to admit that I am a bit nervous to "rediscover" my normal, if that makes any sense. Because, for the past four years, the fact that my RA has been partially treated has been sort of a handy excuse to keep my spirits up when I wasn't feeling well. I knew things were crummy but I could always say to myself "don't worry! Things will be better when my RA is fully treated! I'm doing this for the good of the family!"

But...what if things are not better? What if the treatment doesn't work like it used to? What if I am still in a lot of pain or dealing with large amounts of fatigue - despite being able to take all the meds? And now I also have two little kids to raise? What if things aren't going to get better? I am trying to stay positive and take things one day at a time - the way I always try to keep looking forward. But I have to admit that, at least sometimes, forward seems a little bit scary.

Sunday, October 12, 2014

World Arthritis Day!!

Many people who hear the world “arthritis” picture grandpa walking with a cane, but arthritis isn't actually a disease of old age. Today is World Arthritis Day. Help correct the misconceptions & set the myths straight!