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You've come a long way Baby


This isn't an easy subject for me. But it's a story that I'm sure many will relate too. I have Rheumatoid Arthritis. Thanks to the wonders of medical science and a doctor who worked with me for five years to get my "Molotov cocktail" just right, I am, for the most part, in remission.

I'm writing about this due to my pleasure at saying "I'm in remission" and hope that by sharing the beginning and middle of my journey (I won't say end, because this disease is not curable) I will provide someone out in cyberland with some encouragement.



Before RA (Rheumatoid Arthritis), I was already being treated for chronic sciatic nerve and joint pain-in brief, the physical medicine doctor treated me with over 45 cortisone injections and anti-inflammatories, plus physical therapy. When I questioned him about the use of so much steroids and my medical prognosis and if I may indeed have RA, he told me my blood tests were negative and my hands looked "fine" and said what I had was fibromyalgia and would have to learn and live with my limitations.



Thankfully about this time, our daughter pushed us into the world of computerization and the internet. With her deft hand at computers, she helped me do a lot of research about my symptoms. I found out a very interesting but little known fact: 1 of every 4 people who take the test to diagnose RA, do not register! In other words-a negative positive.

At about this same time period, other debilitating things began to break down: I began having pain and loss of use of my jaw, fatigue, low grade temperatures and heat spots in the middle of my hands and bottom of my feet.



My orthodontist (yes, I still wear a retainer) noticed my physical changes and insisted on an x-ray. There is was, the arthritis had hit my jaw. At this point, I was only able to open my mouth the width of one finger. My daily salads and raw vegetables had been replaced with soup and applesauce. Plus, my power-walking had been reduced to a hobble. Moving most of my body was excruciating. I'm sure I was not a bit of fun during this period.

At that point, I took my x-ray and told my physical medicine doctor that I wanted to see a rheumatologist. He wasn't happy, but agreed.

Within 3 weeks, I met with my new medical miracle worker. He took one look at me (this is why you go to a specialist) and said he knew I had RA. This was actually a relief!

Finally, I knew the last 5 years weren't just exhaustion from working 60+ hours a week. This wonderful man and his physician's assistant worked long and hard for my "recovery".

Because most of the beginning drugs can take upto 3 months to be at full power, change did not come quickly.



Most common medications for RA are planquenil and methotraxate. I was started on the planquenil and when there was only a tiny minute difference in my pain, the methotraxate was added. Of course, anti-inflammatories were de rigeour, plus various vitamins to replenish what the drugs took away. My medical team also had blood tests done every month to make sure other levels remained "normal". During this time, all the cortisone injections created cataracts for me, so at age 44 I had implants to correct the loss of eyesight.

Still not much improvement in the RA arena. However, thanks to some new drugs and this wonderful doctor a positive change finally came!



First, I did retire from running my own pre-school and day care. Too much for my body. Then I took six weeks to rest my very rundown physical self.



I was started on ENBREL injections. My husband, bless him, gives them to me once a week (I've opted to have 2 at the same time,instead of the super once a week version which is quite over the top in the pain area) Within 2 weeks of starting this medication I began to feel better! Within 2 months, I was power-walking 3 miles a day, doing strengthening exercises 20 minutes a day and working full-time.



The real miracle-for the first time in 8 years, no one around me could detect that I had something as serious as RA. I walked with a firm confident stride, I kept up with co-workers who were ten years younger and the best part, I felt good. It's been four years now and it continues to be the case. I've had some bad days, but in general, they have been relatively few.



To wrap up, I am sharing this story to hopefully give others who have health issues to stand up for themselves. Don't take one doctor's word on having to live in a certain way. And definitely do not assume that whatever you are feeling is nothing more than living today's stressful lifestyle.

Look for answers, with the internet available in 99% of households, you don't even have to leave the comfort of your home to do something proactive for yourself!



Another point, I've also made two good friends through support sites. Even though my husband is my lifeline and love, he cannot possibly relate to my bad/off days the way a fellow RA patient can. Even though we've never met face-to-face, these ladies and I share a bond that helps.

With a little perserverance there are ways to improve many of life's less positive situations, get out there and reach for the answers.



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Member Comments

    • 0 votes vote up vote up

      Dee Dee Shaw wrote Oct 31, 2008
    • Carine,
      I would love to share with you some of the research that I have run across regarding RA. The effected cells have actually been ‘sugar printed‘. Basically they have discovered the difference between a RA cell and an normal one. There is a great book called Miracle Sugars by Rita Elkins, and another one called The Healing Power of 8 Sugars (a compilation of doctors). Both of them have specific sections devoted to RA.



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    • 0 votes vote up vote up

      Carine Nadel wrote Nov 1, 2008
    • thank you Dee Dee.  I’m always willing to learn something new!



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    • 0 votes vote up vote up

      Dee Dee Shaw wrote Nov 1, 2008
    • Carine,
      See if you can pull up the youtube videos at the bottom of my blog (in my signature). They are a 4 part series. I think he touches on RA, and explains the scientific discovery that is having such an impact on cellular function. If you’ll pm me with your email address, I send you some more info. I don’t know how to attach a pdf file on Fab40.



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    • 0 votes vote up vote up

      Mztracy wrote Nov 1, 2008
    • Your story is very uplifting!! I am so glad you are doing so well.
      I am very pro-active in my ms. At this time walking again is nowhere in sight for me, but I now one day I will stand and walk with my kids finally.
      Blessings to you...



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    • 0 votes vote up vote up

      Carine Nadel wrote Nov 2, 2008
    • mztracy, you sound very positive.  I have a friend who also has ms.  as with all chronic diseases, it’s sometimes very hard to stay upbeat.  That, I feel, is what keeps us going-that and our families.
      blessings to you as well.



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    • 0 votes vote up vote up

      Kathy Palomo wrote Nov 2, 2008
    • My daughter was diagnosed a year ago with Akilosing spondilitus (I know I didn’t spell it right) and it is in the same family as RA. She is 19 and it has been a rough year. She has tried Enbril (had an injection site reaction), and Humira (had an injection site reaction). She is currently not taking anything as she had to get her tonsils removed a week ago. But she will be put on the next med when this is done. I forget the name of it but it is injected by IV.



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    • 0 votes vote up vote up

      Carine Nadel wrote Nov 2, 2008
    • kathy003-probably remicade.  the reactions I get from my Enbrel are bruising and what my hubby refers to as “elephant skin“.  We switch off constantly-right below the hip line, thighs, back of my arms.
      Has she been icing the area first? I have found that doing that for at least 15 minutes helps.
      good luck to her-blessings to you both.



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    • 0 votes vote up vote up

      Dee Dee Shaw wrote Nov 2, 2008
    • Yikes. Those sound like horrible side effects. Whatscooking, I am not sure why you couldn’t get to the website. The videos are at the very bottom of the page at www.luvmy12kids.blogspot.com Positive results have been seen in many instances, regardless of the diagnosis. It is all about addressing the needs of the cells, and returning the missing ones to the diet. There have been some incredible studies done in the area of nutrigenomics. I don’t have the quote right in front of me but there a doctor who has said that nutrigenomics is the only known way to affect the DNA, and many studies have been done with genetic conditions as well as immune system dysfunction.



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    • 0 votes vote up vote up

      Kathy Palomo wrote Nov 2, 2008
    • Yes Remicade is it. Hers got hot and hard and itchy and very red. Had not heard of icing the area first.



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    • 0 votes vote up vote up

      Carine Nadel wrote Nov 2, 2008
    • sounds as if you daughter had a horrible reaction kathy.  I have a close RA buddy who has been on remicade for over 10 years-she’s very happy with the results. she’s pretty much been in remission since she started.  Icing the area pretty much makes them painless for me!

      Dee Dee-the reactions aren’t so bad, rather have those two little pricks ANYTIME as opposed to how I was before the Enbrel and other meds.

      while I am very glad to have any and all information, it took my doctor and I a total of 4 years to get the meds right to get me where I am, I would never do anything to jeopardize how far I’ve come.



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    • 0 votes vote up vote up

      Mzd3 wrote Jun 11, 2009
    • I am waiting to find out if my problems stem from RA. I wish all the best for you that have it.



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