Who is the strong one now?


I am sitting in the infusion room while Marty sleeps. The Actemra is going in, so we are less than 1 1/2 hours from being finished. We have already been through the questions (lots more than 20), nurse has done her exam, IV is started, pre-meds were taken, and vitals are being taken every 15 minutes. Marty and I had some breakfast while the pharmacy was mixing the Actemra, and as soon as the Benadryl hit, he was out.

Watching him sleep, I am thinking about his strength and resolve. Ever since the Actemra started controlling his inflammation, he has made a conscious effort to get back in shape and eat more healthy. He has stopped drinking sodas (or cokes as we call them in Texas) and has cut way back on sweets. He avoids greasy and fried foods, and purposely chooses the lower fat and calorie options at restaurants. He is more active (partly because he can) and exercises at home several times a week.

Yesterday when we saw Dr F, our family doctor, we were discussing his stomach issues and how eating sometimes makes his stomach upset. I remembered he had blood allergy testing done, and asked Dr F to reprint the results for me. Marty reviewed them and I was reminded how many foods he tested as being allergic: wheat, corn, shellfish, soy, sesame, peanuts and walnuts. Those, plus a half dozen grasses and trees, and our dog and cat. None of these allergies are severe, and Bella commented how many of those foods he had eaten in the past few days.

Marty decided he wanted to cut those foods out of his diet and see if he feels better. We discussed what he could and couldn’t eat, and realized he would need to eat more rice and potatoes. He apparently wasn’t too keen on giving up all those foods at once, so we settled on one at a time. We are starting with wheat.

I have heard that wheat can cause inflammation, but the thought of cooking without it sounds like a royal pain. I know you can make bread from potatoes, and rice flour can be substituted for wheat in recipes, and apparently I will need to start looking for gluten free products.

I was feeling sorry for myself having to make these changes, when I looked at Marty and thought about the changes he has already made. Not only trying to be healthy, but the trials he has had the last few years. He has worked through pain, pushed himself through fatigue, ignored criticism and stares, and put on a happy face while getting injections, infusions and blood draws. I guess the least I can do is figure out how to eliminate wheat from his diet.

Kids with juvenile arthritis are some of the bravest and strongest people I know. They rarely complain, and give their best when others are just going through the motions. They want to be normal so much that they will endure pain and stiffness, knowing they will hurt more the next day. And here I sit thinking about getting my next chocolate cake fix. I’m such a wimp.

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About juvenilearthritis

A single mom raising a son with juvenile arthritis and a daughter with a big heart.
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6 Responses to Who is the strong one now?

  1. Diana says:

    ‘Kids with juvenile arthritis are some of the bravest and strongest people I know’- That’s for sure!! They are some of the world’s best little champions of soul. Just thinking about how strong they are and what they have to deal with growing up, brings tears to my eyes. They are truly brave little fighters! Thanks for you post. <3 Diana, New Zealand.

  2. k says:

    Marty is so strong, I just found our blog while I was searching for “Actemra for Juvenile Arthritis”
    I`m a fourtheen old girl having polyarticular Juvenile Arthritis in nearly all my joints (such as ; toes,ankles,heel,knee,hip,back,shoulders,neck,elbows,wrists,fingers,jaws , leg pain.

    I`m also on my way triying a diet, tryied some before but my pain was still there. But anyway on my way trying it and think will help if not that much may a bit. What type of JA do Marty have?

    I`ve tried the must, before biologic, MTX(since I was 12,still on it) , CortisoneInjections , NSAIDS and mure without effects. The worst episodes I`ve been on Prednisolon just a while. But without prednisolon nothing seemed to work. So in the start of this year I was put on Humira 40mg every another week been on it for 7months but still no relief. Or might on my psoriatic beacuse I don`t have it anymore. Start of JUly the sat me on a prednisolon-cure and I was feeling well all the way before starting lower the dose. Must of my joints become swollen,imflammd,hot,red,stiff,painfull and so many joints they told me was to hard inject so a new dose of prednisolon. 20mg two weeks, then 15one week, 10one week,5,2,5… AGAIN!! Loweing the dose made me not feeling good at all. the same thing as before happend (swollend,stiff,painfull,red,hot joints..

    But i now one day everything gonna get well. Symtoms and Flare ups will just far away. Becuse the day I`ve got some new medecine that work or its had come an cure.. Soo thats why I was searching on medecines.. Sorry if you don`t understand was I was writing, but im just still a kid and not that good writing right.

    Give Marty a hug from me and tell him he is inspirating people all over the world. He is so strong,

    Just send me a mail or something If you have some questions
    or you(or marty) just want to talk : [email withheld]

    • Thank you for those kind words. I’m glad that our story can help someone else. That’s exactly why I started blogging.

      I hope you can get some relief soon. Marty had to try 3 other biologics before we got to the Actemra, which seems to be doing the trick. Don’t be afraid to get a second opinion, and if you’re not seeing a pediatric rheumatologist, it’s worth driving (or even flying) to get better care. The longer before you get the symptoms under control the more damage can be done to your joints.

      Good luck and pain-free virtual hugs!

  3. Cindy Wollard says:

    Hi we did allergy testing as well and my daughter at age 11 went on an extreme diet change. No wheat, dairy, peanuts, eggs, sugar and more. Difficult is an understatement but we got results that are a miracle. Hope you have the same or better results as well.
    Cindy

  4. jessica cooper says:

    Hello i am turning 16 in marchbi was diagnosed with juvenile reumatoid arthritis when i turned 3 years old i have difformed toes levo scoliosis and now heart trouble reading this helps me not feep so alonebi recent started the actemira infusions and it has hightened my tryclceride levels so watching diet while taking this would be good i the first 10 years of my disease i took methotrexate and hated it then tried enbrel but was always sick we then trird orencia but the side affects were bad i then did the actemira but stopped when my tryclicerides hightened to 1,400 normal level is 120 so on top of this i take cymbalta l, mobick, flexerol, tramidol, arava, qnd well much more if ever need to to talkbim open to it

  5. jessica cooper says:

    Mybarthtitis attacks ever joint ij ymy body and i will tell you it sucks when i havebthe days wherebi walk like im 80 years old u got surgery on my feet and they refuse to touch me again my bone are as bruttle as an old ladies

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