A little background on me and my RA journey…

I am a 34 year old wife, mother and avid runner. My 3 and 1/2 year old daughter is my world. She is the reason and catalyst for everything I do in life. In addition to those things, I am a person who has rheumatoid arthritis and asthma. I want to share my story because I found myself in a very scary position several years back when I was first diagnosed with rheumatoid arthritis (RA). I want this blog to be a platform of hope for anyone who suffers from RA and a resource for anyone who loves someone who suffers from RA. It will also be about just navigating through my training and life. I welcome any and all questions, just please remember I am not in the medical field and can’t diagnose anyone. I can only offer support, inspiration, hope and understanding.

My RA journey began when I was six weeks pregnant. At six weeks along I started having pain in my shoulders. Since I was still running around 40 miles a week, I blamed the shoulder pain on a strenuous workout. I took then next two days off and the pain went away as quickly as it came on. So I didn’t even think anything about it. Over the next several months I would go on to experience flare up after flare up with each being more painful than the last. I had 2 trips to the ER from the intense pain. Flare ups are unlike any pain I have ever experienced. One of the flare ups was in my jaw and I couldn’t eat or swallow (and for a pregnant runner eating was a big deal!). When I called the OB/Gyn they told me to go to the hospital b/c they thought I may be having a heart attack. I was livid because I knew that there was no way I was having a heart attack. When I arrived at the hospital all they could do was offer me pain medications, but no one had answers. I wanted so desperately to have answers. Why was this happening? Why was my body all of a sudden in so much pain? My next ER trip came when the pain struck my right hip and knee at the same time. I couldn’t even get out of bed to use the restroom. I was a distance runner that couldn’t walk even 15 feet. I literally had to pee in a cup (I warned you this blog would be real). After this trip to the ER, my OB/Gyn scheduled me in to see a maternal fetal specialist. Her conclusion was that my baby wasn’t getting enough blood and said she may not survive. I was devastated. I had a miscarriage just before this pregnancy and now I was being told I may lose a baby at 5 months along. After having weekly blood draws and continuous flare ups, I finally begged to see a rheumatologist (I needed a referral to go in). I knew that it had to be something to do with my joints because that is where the pain radiated from.

During pregnancy my inflammatory markers were through the roof, however, the RA factor would not show positive and my pain would migrate from joint to joint and not always be symmetrical. So my doctor diagnosed me with palindromic rheumatism and I was prescribed prednisone to help ease the pain. It wouldn’t be until after I delivered that my RA factor would show positive and I was officially diagnosed with RA. After delivery the RA attacked me with a vengeance. I would get up to pump at night and I would swear the bones in my feet were broken. There was no way anyone could be in that kind of pain and not have broken bones. I couldn’t bathe my newborn daughter because my hands were so swollen, nodule covered and in so much pain I was scared I would drop her. Trying to wash my hair was so much of a challenge that some days I just left baby vomit in it because I couldn’t squeeze out any shampoo. My life had completely changed. So one day, I was sitting in my rheumatologists office and I asked him when I would be able to run another marathon. I had red and swollen nodules all over my hands and feet, but I was desperate to have something make me normal again. To make me feel like me. My entire world had completely changed around me. I wanted to be me again. I wanted my life back. He looked at me and said, “I don’t know if you will be able to run another marathon or not.” And with that I had the most ugly cry you have ever seen. I felt as though I had just been robbed of my Boston dream, my passion for running and my ability to ever live a normal life. I just wanted to run. I came home and immediately went to google. Surely my doctor was wrong and there were athletes everywhere that run and compete and win. I didn’t find too much out there with runners and RA.

So, this is why I wanted to start a blog. I do have bad days still, but I have some really amazing days as well. I train hard 5-6 days a week (depending on flares and fatigue days) and I win. When I step up to the line in a race I remind myself all of the struggles I had to get there and I know no matter what happens that I am probably racing against most people who don’t have to worry about an autoimmune disease. I have been through almost every medicine out there for RA, prednisone, methotrexate, Plaquenil, piroxicam and now Enbrel. The Enbrel has been a life saver for me. I still have bad days. I still have extreme fatigue days. But on the days I don’t, I train like a beast. I try to eat mostly healthy (except my ultimate weakness….oreos) and I try to keep positive. I believe attitude makes such a HUGE difference with coping and life in general! The fatigue days are the worst for me. As a mom to a very active toddler it is everything I can do to function on those days. I carry some mom guilt when I have to sit her down in front of the tv for hours so I can lie down beside her on the couch. It’s what I have to do to get through the days sometimes. But, then there are days where I can crank out a 21 mile run at a 7:30 pace and then have the energy to chase around my toddler all day long. It’s a tricky disease to have. My main goal for this blog is to be REAL. To show what it’s like for someone to have RA, but to also show that you CAN train hard. You CAN live life and go back to being YOU, it just may not be a direct path. It took me a while to find a medication that really helped. So, about some positives. I never qualified for Boston before I had RA. And since I’ve had RA I’ve qualified with every single marathon I’ve ran so far! My flare ups forced me to adjust my training and to learn to love cross training. That has been a life saver to my running. Not to mention, my recovery isn’t what it used to be. I’ve been able to run Boston twice now! I ended up winning 14 races in 2014! I won 14 RACES. That means 14 times I was the fastest female to cross the line. The fastest one even with having RA and asthma. So far 2015 has been a wonderful year as well for racing and training. I am currently sitting at 8 wins this year. I haven’t raced as much as I have ran 2 marathons (training for a 3rd right now) this year. I actually managed to race 2 marathons 3 weeks apart and I nabbed a PR (only by 2 seconds) at the second marathon. I mean who gets a PR at Boston only 3 weeks after another marathon?! Not to mention it was a cold, windy and rainy mess that day. I am proud of what I have done. I work hard and will always work hard. I want my daughter to be proud of me. I want to encourage others. I want to help spread awareness. And I also don’t ever want to look back and regret not pushing the limits on what I can do right now. I may not be able to in the future. I am hopeful that one day a cure will be found. Until that time, I will continue to do everything I can to help inspire and encourage others. In this blog I will be focusing on my training, racing and daily life with an autoimmune disease. I welcome any and all questions and hope this blog is encouraging, informative and helpful.

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24 thoughts on “A little background on me and my RA journey…

    1. You are a gigantic source of inspiration and motivation. Thank you very much for this blog Alicia and we all know you will change lives. I also struggle with Osteoarthritis OA but now I know it is not the end of the world if we have discipline and commitment. Pretty sure that your blog will be the “go to” when struggles hit hard

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      1. Julissa thank you so much! I had no idea you suffered from OA. I am so sorry to hear that. I am so, so, so honored that my blog will be a source of inspiration when the pain hits. We definitely have an uphill battle, but WE both can overcome the struggles.Thank you so much for everything!

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  1. This is absolutely amazing. Some of this I didn’t know! You are amazing in every way and I’m very happy we are friend! You have my support!

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  2. Disclaimer: The following statement is meant for humor purposes ONLY, and is, in no way, meant to offend snyone.

    Alicia, I read your entire blog thinking you were going to say Oreos were the only thing that got you through the pain of RA. Just kidding.

    You are an inspiration to everyone, not just those afflicted with RA. Thank you for sharing your story. Run like the wind!

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  3. I love your post and look forward to reading many more. Last year I was diagnosed with RA and have been dealing with the ups and downs of it like you. Currently I’m working on getting back into better eating habits and working out. Also, finding the right medications is a big plus.

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    1. Katie, I am so sorry you were diagnosed with RA. And yes, you are so right. Finding the right combination of meds is a HUGE help. I also take turmeric and it makes a great addition to the Enbrel. I wish you lots of luck and sorry you have to deal with it at all. Please keep me posted and I am always here if you need to vent or have someone listen. Thank you so much for reading my blog. Have a great day!

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      1. Please don’t feel sorry for me. It could have been a cancer diagnosis or a rare disease with no treatments or cure. We live in an era where medicine has been created to fight RA. I have a great job with amazing insurance, an RA doctor who cares about my health, and I was lucky enough to get into a research study for a new biological drug which so far has been a great treatment and my treatment is free. My doctor hopes my early detection and aggressive treatment will put my RA into remission. I also have a wonderful husband, family, and friends that have been supportive and there for me every step of this journey. There are days I wonder why this happened to me but those days are few and far between, thankfully.

        What do you use turmeric in? Once in awhile I will put it in dishes. I should probably find a way to add it every day to my diet.

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      2. That is a great way to look at it! I really believe being positive is such a huge help with the disease! I am so happy you have an amazing support system. too. That is wonderful. I take the capsules. They have really helped since I’ve been using them on a regular basis. It is so great to be able to reach and and speak with other people who have this. Thank you so much for talking with me! Have a wonderful night!

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  4. Alicia, you are in inspiration! Thank you for so openly and honestly sharing your journey. Doing so brings hope and motivation for others, and hopefully your blog will grow to reach more and more! You’re a wonderful mom and kickass woman.

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    1. Thank you so much Joyce! I really appreciate the kind words. And you perfectly described why I felt compelled to write this blog. I want to offer hope to anyone who may have lost it.I refuse to believe I got RA just to suffer, so I must use it as a platform for helping others.Thank you again!

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