Celebrate Rheumatoid Awareness Day February 2, 2014 #Rheum

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Though this post is deeply personal and difficult to write, I am happy to be participating in a blog carnival for Rheumatoid Awareness Day coming up on February 2, 2014.  Organized by Kelly Young from RA Warrior, this year patients are discussing what Rheumatoid Awareness would mean to us. I’ve been living with Rheumatoid Arthritis (Rheumatoid Disease) since the birth of my oldest son and have a lot to say. Want to join in and help raise Rheumatoid Awareness? Here’s how you can help and be sure to share these posts and spread the word! Every little bit helps!

>”Rheumatoid Awareness Day, February 2nd, is a day of recognition of the reality that Rheumatoid Disease (RD) is a progressive inflammatory disease in need of greater research and improved treatments. RD causes damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. Rheumatoid Awareness Day helps combat the misconception that Rheumatoid Disease is a form of arthritis. While joint inflammation is a prominent symptom of this disease for most patients, it’s a disservice to refer to RD as merely a type of arthritis. Patients in our community have often experienced systemic effects of the disease that confirm what research tells us. So…
* More research dollars?
* Earlier medical treatment?
* More appropriate accommodation?

WHAT WOULD RHEUMATOID DISEASE AWARENESS MEAN TO YOU?
Tell the world your answer…
* Share your answer in the comments box.
* Share this blog post on social media, along with your answer.
* Email this post to a friend, adding your comment (button below).
* Write a blog post about WHAT RHEUMATOID AWARENESS WOULD MEAN on your own blog.”

What Rheumatoid Awareness Means to Me:

Better Recognition of Symptoms for Earlier Diagnosis

I didn’t know what Rheumatoid Disease was until I got it and had no idea how it would change my life. Rheumatoid Disease is prevalent in women in their child-bearing years. It often flares after childbirth and in my case, first appeared after the birth of my first son. An untreated sore throat sent my immune system to attack my joints and began with swelling and pain in my hands. Rheumatoid Disease attacked my body quickly and joint damage is permanent.

As if being a mom isn’t difficult enough, Rheumatoid Disease has made it harder for me to do even the simplest tasks. These are my hands after 12 years of Rheumatoid Disease, I can’t straighten them fully or lie them flat. They deviate towards each other though in the picture I’m using the ground to help me straighten them to see my fingers. Only knuckle replacement surgery will fix them now. Both hands in casts for a couple months? I don’t think so! Not when my kids are young anyway.

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My hands after 12 years of Rheumatoid Disease/Rheumatoid Arthritis

Increased awareness means more new moms would take better care of themselves and seek treatment at first appearance of symptoms.  Being a mom is hard enough without additional health complications.

Rheumatoid Disease is genetic. My sons inherited my big cheeks and smile, but I fear most they will also inherit my Rheumatoid Disease. It’s a life-altering disease, I can’t run and play with them because of the permanent damage done mostly to my hands and feet. I am always on the lookout for swelling or pain in their joints when they get sick. And I do my best to treat their sicknesses effectively and proactively so their immune system won’t attack their joints too. Rheumatoid disease attacks kids too, it knows no age limit. Increased awareness would help parents recognize their kids’ symptoms. Earlier diagnosis means less joint damage and a better quality of life. Kids should be able to run and play…and be kids.

More Research Funds

Every patient is different. While my Rheumatoid Disease is controlled well by Remicade, it’s a strong and very expensive medicine. Without it though, I would not be able to walk. I still fear what the long-term effects of taking such a strong medicine will be for me later in life. The list of possible side effects? Scary! Research is needed to know what causes our immune systems to attack, ways to prevent/control the painful flares, and find less powerful and more effective treatments. For me, for the millions of people young and old who suffer from the pain and effects of joint damage.

So won’t you help us get the word out to fight this disease? Stop by RA Warrior and Rheumatoid Patient Foundation and check out all the great work Kelly is doing to raise Rheumatoid Disease Awareness!

Share my post on your blogs and social media. Tell pregnant moms about it and take care of yourselves when you get sick! There’s no cure right now but maybe there could be in my kids’ lifetime! Thanks for your help.

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17 Comments

  1. I am so thrilled to “meet” your blog! I was diagnosed with very early stage RA two years ago and I’ve been on a mission to learn more since then.
    Visiting you from SITS and sending love! 🙂

  2. Hi, Thanks for visiting my blog, and this is something I would like to add on my blog, too. Partly because awareness is so very important, and early diagnosis is very important. My diagnosis with EDS came at 51 (much too late). My grandfather had severe RA, and suffered greatly, and I wish for more funding for research for this too. Thank you

    1. As hard as it is, I am a lucky patient. I have a medicine that keeps it in remission (no active inflammation but if I go off the med, pain comes back). The joint damage has been done but I can take care of my family. Many people who have had it this long are on disability, in wheelchairs and in pain because they cant find a medicine that works. Keep us in your thoughts and prayers and share my post to raise awareness. Thanks for stopping by Jill.

  3. Thanks for sharing. I have a vague idea of what you must be going through each day. I have RA in a light form and it hasn’t bothered me for months (with medication). Right now it seems to be starting again with joint pains. Nothing like you, though. I hope the medicines keep your RA at bay.

    1. Thanks Judith. I hope you can share my post to help raise awareness. I am glad your case is mild. I’m very lucky the med does keep it in remission!! I don’t know what I would do without it.

  4. Wow. I had no idea rheumatoid arthritis made such a difference in peoples’ lives. Thank you so much for sharing. My dad has osteoarthritis and I have been having some strange symptoms since the birth of my son 10 months ago. I am a little nervous about what we will find, though my symptoms do not seem the same as yours. I guess we’ll see!

    1. I hope your doctor checks you for RA. I was confirmed with a blood test. Better safe than sorry. I don’t want to have regrets in my life, but I cant help but wonder “what-if” I had gone to the doctor sooner for my sore throat when my son was born. Maybe I would’ve gotten on antibiotics to nip it in the bud and I wouldn’t have RA. I hope they can rule it out for you but like I said it flared for me each time I gave birth to a beautiful baby boy and the pain would start a 6 weeks-3 months after. Of course every patient is different but doesn’t hurt to get checked. Sorry for ranting, early diagnosis is key. Take care and hope you feel better soon Rachel. If you want to discuss further feel free to email me.

      1. Thanks for your reply…I just now saw it! So far all of my basic labs (CMP and CBC) have come back normal, but I am waiting on the results for my Epstein Barr test….what kind of blood test do you need to check for RA?

        By the way, thanks for linking up to the Bloggers Brags Pinterest Party. I have pinned your post to the Bloggers Brags Pinterest Board.

        1. Thanks for pinning it Rachel. They test for RA factor in a blood test. It doesn’t usually come in a standard CBC test, doc would have to order it.

  5. I feel for you and the others so much! I have friends that have had multiple surgeries for ankles;hips/fingers, etc because of the arthritis. I was once tested for it as I had been sick like you and then it just got worse where I had pain in every joint, walked with canes, crawled up and down stairs, etc. I praised the Lord at that time that I had no children as I wanted them, but we didn’t have them. I did not know how I would have taken care of them. I was on high dosage pain medicine to function. But I also had fevers–so it was finally determined I had an infection that had settled in my bones. After two months, it gradually wore away, and I never have had it since. But it was scary as they were testing me for lupus and arthritis knowing that once you have it–you always have it!

    1. I am sooo glad your infection was healed and sorry to hear you were in such pain. We’ve had some tough times, I’ve had a couple surgeries so far and with each I don’t get back normal function like I hoped. This is my cross to bear but I am thankful its me and not someone I love. I am thankful too medicine is keeping it in remission and as good as its going to get for now. Thanks for stopping by and please share to get the word out. Hopefully it will help someone else get diagnosed early and prevent joint damage.

  6. Thank you for sharing! I will be sharing this with a friend of mine…her son suffers from JRA and is currently getting the infusions. It has been so hard on them. I wrote an post about him on my blog a few months back you should check out if you haven’t already!

    1. Thanks Carli. I checked out your blog and visited your friends site on Facebook. Breaks my heart to see what juvenile RA is doing to that sweet boy and his family. Thanks for doing your part to raise awareness.

    1. You’re welcome. I hope you get checked for RA Tess. Mine was confirmed with a simple blood test. My pain also is worst in the morning and the RA doc always asks how long pain lasts in the and morning as indicator of RA actovity. cold, stress and my menstrual cycle makes it worse. Other symptoms are if pain is symmetrical, like both your shoulders hurt as opposed to just one spot on your body. Swollen joints are a sign of activity and joint damage being done. Email me if you have any questions but I do hope you get checked out even if its to get peace of mind that you don’t have it. Take care and hope you will share the post with others.

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