About

A little about the site:

My name is Lori.  My husband and I started this website in early 2006.  I flared after the birth of my son in 2005.  There were no answers out there, and my doctor at the time was of little help.  Enter MomsWithRA.org!  It’s a place to meet other women with RA who have kids, want kids, or just need to chat about RA.  We also welcome any women/family members with other autoimmune conditions.  Please join the conversation!

 

It is now 2013, and we are doing an extreme overhaul of our website.  I think these last 7 years have given a ton of information, especially on our forums of over 1200 posts from women with rheumatoid arthritis.  We’ve expanded into Facebook, blogging, Paleo, and are even trying videos.  We’re trying to partner with some other online sites to give moms with rheumatoid disease a place to go for information. It’s time to pretty-up the site though, and keep expanding our reach to help moms who need it!

Chris, Cavan, and Lori, 2006

A little about me:

I’m now 40 years old (agh)!  Although we wanted to have more kids, it seems unlikely now.  We have a beautiful son, Cavan, who is 7 years old.  I was diagnosed with rheumatoid disease/arthritis in 1996 at the age of 23.  I had 3+ really bad years, including liver failure from methotrexate (don’t worry, this doesn’t happen to everybody!)  Hydroxychloroquine also failed me.  I had 6 really great years on Enbrel (the first biologic, which came out in 1998).  I stayed on Enbrel at a lesser dose during my pregnancy.  Cavan was born a healthy 6 pound, 4 ounce baby boy.  I had 5-6 years of significant ups and downs following the birth of my son.  In 2010 or so, I started a great exercise program at a hospital.  I can now do Pilates, which has helped immensely.  On January 9, 2012, I started the Paleo Diet to see if it could help my rheumatoid disease.  It has, more than I ever could have imagined.

 

That brings me to today, August 17, 2013.  My RA is well-controlled with normal inflammation markers, and great overall health (at least as far as my blood work shows).  Remission is a great word, and I’ve heard it a couple of times from my doctor.  This doesn’t mean I don’t have RA, but rather it isn’t detectable with my current treatments of Paleo Diet, Pilates, and Enbrel.  It is literally a daily battle to keep my body healthy, but it’s working!  And thus far, I’ve lost 51 pounds.  Bonus!

Size 16 to size 4, normal inflammation markers, daily choices to keep my body working.

Please keep in mind that the advice and discussions given and received here are not a substitute for your doctor’s advice.  We are not medical professionals, and any changes in your care or that of your child should be done under your doctor’s advice and supervision.

So, join me, join the Facebook group, or join the forums.  Introduce yourself!  Join the conversation.  Share your story, and help other moms now and into the future!  Welcome!

 

My e-mail:

 

6 thoughts on “About

  1. Thanks for sharing. Glad to hear paleo is helping so much. Tell me more re the pilates. What kind do you do? Do you do it in a studio? Was it very painful at 1st and then got easier?

    Thanks
    Monique

  2. Great questions, Monique! At some point in the future, I want to photograph my torture device and put it in the blog, but got some other things to do first.

    In the meantime, to answer your question, I started Pilates after starting an exercise program at the hospital where I see my rheumatologist. It took a long time for them to figure out a program that I could do. At first, I couldn’t do anything with weight or tension. It was going through the movements, and even that seemed to set off my rheumatoid. It took a few months, but then it got better. They tried different things with me for weight. Initially it was lifting 16 ounce soup cans,, then theraband of increasing tension (theraband is like giant rubberbands, cut to any size you’d like and can be used by tucking it in door hinges, or using you feet to pull against your hands, etc…), exercise bike, balance exercises, weights, machines, etc… Eventually what I settled on (probably 9 months or so in) was a Pilates Reformer, which the hospital had. I liked it because it was all tension (no impact), and I didn’t have to get up and down from the floor (which I suck at and hate). My workouts continued once a week, and I did some exercise at home. I wasn’t as good at home because I didn’t have that Reformer that I loved so much. They’re ridiculously expensive, but eventually we bought one off of Craig’s List much cheaper. It’s not as fancy as the one at the hospital, but now I do it at home and have dropped the hospital program (which I did weekly for about 2 years).

    I wish I still had a person to check in with on my form and stuff, but the hospital commute was getting to be too much. I do have 3 giant posters of different poses (the woman I bought the reformer from was a trainer and gave them to me). I can do most of the beginner ones, and some intermediate and advanced ones. Looking at the poster, I suppose there are some I will never be able to do, but that’s ok! If I had a studio close to me, I would absolutely make it a priority to go. Unfortunately, everything Pilates is at least 45 minutes from me, so for now I’m on my own.

    It was hard at first, very hard and frustrating. It helped to have somebody there who kept lessening the challenges until we could find something my body would cooperate with. When I “fall off the wagon” and stop exercising for a few weeks, it almost seems like I’m starting over again. My body gets pretty POed about getting back to it. I’ve learned to accept that, go slow, and do my best. I’m only human!

    Mine is wood, but this is basically what mine looks like:
    http://www.fitnesssuperstore.com/Allegro-Reformer-p/allegro.htm?gclid=COWU_bndhbkCFY1FMgodjjoAQA

    The hospital’s looked more like this:
    http://www.thefitnessoutlet.com/stott-pilates-v2-max-plus-reformer.html?productid=stott-pilates-v2-max-plus-reformer&channelid=FROOG

  3. Update: As of December, 2013, my Enbrel dose has officially been cut from two 25 mg shots per week to one 25 mg shot per week. Woo hoo!

  4. Have just started the AIP diet. Wondering if its ‘normal’ to have an increase in symptoms initially? Have been on Methotrexate for 12 mths but it is no longer working so am trying anything I can to improve and avoid adding another drug! Thanks.

    Larissa

  5. I did not have a true worsening of symptoms, but I did have some changes. I thought I might have been getting worse, but what I realized was that when my inflammation was gone, my ligaments were stretched out, and some of my joints were “unstable.” This took some adjustment on my part and some physical therapy. Sometimes the looseness of my joints was more painful than the RA itself. I didn’t truly have a worsening of my RA though. How how have you been AIP?

    The second time I tried AIP (having done standard Paleo minus tomatoes for 2 years), it was a flop. I felt awful, but later discovered my thyroid was to blame.

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