Dealing With a Diagnosis: Rheumatoid Arthritis (RA)

Their (Doctors) Definition

I was diagnosed with Rheumatoid Arthritis one year ago, at age 34. The first thing I did was look up all the definitions, explanations, and information I could gather. Unfortunately, it's all the same- every website, every book repeat the same info. What helped me learn the most about RA was reading personal experiences and stories of people who have it. Also, frequenting health food or vitamin stores put me into the position of meeting employees at these stores who knew a lot more than my doctor.

Here is the definition from doctors: I'll give you their definition, then I'll give you mine.

Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs. There is no cure, only methods and medications to releive symptoms and hopefully major joint deformation.

Symptoms: Joint pain and swelling, Fatigue
Loss of appetite
Morning stiffness (lasting more than 1 hour)
Widespread muscle aches
Weakness


The cause of RA is unknown. It is considered an autoimmune disease. The body's immune system normally fights off foreign substances, like viruses. But in an autoimmune disease, the immune system confuses healthy tissue for foreign substances. As a result, the body attacks itselff. Eventually, joint pain appears. When the joint is not used for a while, it can become warm, tender, and stiff. When the lining of the joint becomes inflamed, it gives off more fluid and the joint becomes swollen. Joint pain is often felt on both sides of the body, and may affect the fingers, wrists, elbows, shoulders, hips, knees, ankles, toes, and neck.

It effects: 2 million people in this country; much more common in women than men. Women ages 25-50, mostly childbearing years.

Everybody else

Some people think you must have done something to get this disease. Well I never smoked, hardly indulge in alcohol, never took drugs, and lived a natral healthy and active lifestyle prior to my diagnosis. I love to see the look of terror in other people's eyes when they actually get the notion that this or something similar can happen to them in the blink of an eye. And it's true.

Everybody is an expert on what you should do. I was raised on whole natural foods and treatments. My parents were shopping at health food stores when they were nothing more than an old woman's privately owned hole in the wall store offering nutritious alternatives. Now everybody has their hands in the whole food/natural markets. 

Those of us diagnosed with something major like this have limited options. We don't know what causes the disease and what exactly helps or "cures" it. We stumble about listening to everybody's advice. Doctors are right in the way of painting a very real future for us if we don't take prescrips, but then we look up info on the RA presrciptions and that's equally scary. Who do we listen to? Personally, I have a gut feeling about staying as natural as possible but in the mean time this disease is destroying my body- time is not on my side. 

My Personal Definition of RA

Being 35 and feeling 80- I’m not kidding or exaggerating. My mom, who is 65 and disabled, can do more than I can on most days.

I’ve got to invent a new definition of myself- who am I now? Not only has my body betrayed me, bu my mind and my thinking are different. I was defined as being an independent woman, active in general, able to pick up my 2 yr old daughter, healthy, and now I am none of that. It's not to say I can't become some of that again, but never 100% myself.

In the begining, the disease knows your body better than you do. To hear that your body is attacking itself is absurd and hard to understand. It has control and realistically all you have is some negotiating power by taking care of yourself optimally. Of course the caveat is I can barely get out of bed let alone take care of myself- and my 2 yr old. I can barely stomach the thought of brownies let alone something healthy to eat- loss of appetite is part of RA.

Pain changes a person, especially chronic pain. Anybody with Chronic pain knows this very personally. The average person can wake up in a good mood or get to a good mood with minimal hurdles. The person with RA wakes up and everything is a hurdle- everything is against you and you must overcome your own body to be in a good mood. The pain with RA can be so bad that doctors hesitate to prescribe pain killers because we would be too easily addicted.

Every day is different, no plans can be made. My personal definition of RA changes on a daily basis when I wake up in the morning and survey the damage- Can I get out of bed quickly or is it a slow-start day? Can I eat or is my jaw too swollen that day? Can I drive or are my hands too painful, or worse, can I even get my daughter in her car seat (that is the most painful, emotionally and physically). Every day I have to assess what joints are painful and swollen and that’s how I determine what I can do that day. If it's a bad day, I try to stay positive and in my bathrobe.

Relying on faith and hope and prayers- sometimes doctors don't have all the answers or your complete prognosis. Only time (and faith) will tell. I used to (and I think everybody does this) have a general plan for my future, but now I am burdened with limitations. As a child, my dad taught me to play tennis and I enjoyed that time so much with him. I am blessed with an active and very phrysical 2 yr old who I was planning on teaching her to play tennis someday too, but now I can't plan on that. All I have is hope- teetering on hope and reality constantly.

Little things are big. This is my life now. When little things are big, life can get pretty overwhelming. I can safely say everything I used to take for granted is either a struggle, a mental or physical hurdle or I just have to accept things I can't do at all. Sometimes I get determined to do something so hard because I think willing something hard enough will make it happen. The more I try, the more I get let down, so acceptance is that new part of my life I'm dealing with- Not letting one hurdle ruin my day.

Thankful and grateful- for what I can do and that I'm alive. I haven't been given a death sentence, just a certainty that my future is uncertain. There is no way to predict how RA will affect an individual so unlike the average person, I am reminded every day that what lies ahead of me is an uncertain path and I have to give up some of he control. This is positive though- I am more aware and thankful of my good days than most people.

More by this Author


Comments 14 comments

hypnodude profile image

hypnodude 6 years ago from Italy

As you already know for now I haven't a deep knowledge on RA, but the important point is why at a certain moment your Immune System fights your own body; what made it to happen?

This hub explains pretty well the topic, so I'll rate it up, stumble it and link here when my hub on RA will be ready.

I hope today is a good day.


GmaGoldie profile image

GmaGoldie 6 years ago from Madison, Wisconsin

My Mother had RA - it eventually took her life by enlarging your heart. I myself am fighting a B12 deficiency which I wonder IF she had also. Anyone with RA, please add for a simple blood test for B12. You are probably fine but those vitamins are critical especially when you are battling this horrible condition.

Great article and the photo is my Mother hands - her feet were terribly crippled.

The water exercise will help you tremenously - glad you starting now! Be sure to continue - exercise will help and the water is wonderful!


remaniki profile image

remaniki 5 years ago from Chennai, India

Hi izettl,

Remember me? Found this Squidoo lens, thought you might be interested in reading it, so here it is:

http://hubpages.com/health/rheumatoid-arthritis-na...

Hope it is helpful. Wanted to hurriedly post the Squidoo link that I almost forgot to read this hub. Now I did. Like you, I was also affected by RA when I was 34 after a very active life with absolutely no illnesses. Very strange that you never know who this condition will attack. Of course, doctors attribute the occurrence partly to heredity.

Now I am in total control of RA izettl, I can tell you for sure that it is because of meditation and of course water therapy. I had told you about the Art of Living Course where you learn special breathing techniques which have been extremely helpful for the improvement in my condition.

How are you? You must have started water therapy by now. You will soon be able to handle your active child beautifully. I am sure it's going to happen.

Cheers

Rema.


izettl profile image

izettl 5 years ago from The Great Northwest Author

remaniki~ yes, of course I remember you! Glad to know you are still doing good and you are an inspiration. A lot of things had been put on hold for me as I was paying medical bills, but two weeks ago, I've started water therapy, tai chi, and supplements. I tried meditation and it is still hard for me. I don't know why, but it seems the quiet is loud in my brain. I know that sounds strange, but maybe I need to try it to a CD with background sounds or nature or something. I will try to figure something out.

I have to get back to feeding my daughter lunch right now, but later after I put her to bed, I will be able to concentrate on reading this link. I am looking forward to it. THank you so much fo thinking of me!

Laura


Christopher Price profile image

Christopher Price 5 years ago from Vermont, USA

First, congratulations on attaining a 100 hubber score. Didn't I just congratulate you on having 500 followers?

You are sailin' girl!

This hub is of particular interest to me. About 2 years ago I contracted an Autoimmune disease called Henoch-Schonlein Purpura or HSP. It generally strikes children and teenagers. It hit me right after my 58th birthday...I told people I'd never grow up!

HSP manifests itself as a rash made up of pore-sized blood-red spots that can develop into blood blisters and open wounds. I got all that plus the complication of residual arthritis.

The HSP lasted about 6 months, but the arthritis remains in my ankles, knees, hips and lower back.

My doctor is a good man and is just happy the kidney problems HSP can also cause didn't kill me.

I have an immune system I have always bragged about...I cruised along face to face with people who had every disease from flu to TB and never got any of it. Unfortunately, my body got bored fighting off outside invaders, and decided to kick my own ass! I tell that to my doctor and he just shakes his head and has to agree.

Anyhow, I can empathize Darlin'. I can see you have good attitude, I pray you'll see a remission.

Tell your immune system to cut the crap, get a hobby, find some germ to attack and let's get on with life.

Meanwhile, Write On.

CP


izettl profile image

izettl 5 years ago from The Great Northwest Author

CP~ First, it means a lot that you read this- it's not a popular hub. Many people stay away from anything to do with illness. It's been a year for me and my positive attitude has been more consistent the last few months.

i am sorry to hear you had to deal with something that could have been life threatening. It's scary when our bodies suddenly turn on us.

Like you, I've always been healthy. I learned that people who get autoimmune illnesses have an overactive immune response. It means they have such an extreme immunity, it attacks their own body. This may sound silly, but it makes sense.

"tell you immune system to cut the crap"- that's a good one. I'll use that for one of my positive affirmations. I'm hanging in there and take the bare minimum for meds so I deal with pain every day, but I want to find a natural way of finding remission. Prayers accepted :))


stacyjwx profile image

stacyjwx 4 years ago from MA

I absolutely love what you wrote here. You described my life, my hurdles, my burdens, and even the emotional difficulty that goes along with RA. You used the same words I do to explain to other people how I feel about RA saying, "my body betrayed me" because the body truly does take over. I was 32 when I was diagnosed, (maybe 33 because my memory is fuzzy) and the hardest part still is finding the right medication to help me. It's important to do something to stop the disease so although natural therapy is a good idea, DMARDs are important to stop the damage on joints. My grandmother had RA. My father told me that some days she would just cry because she hurt so badly. I pray my fate won't be exactly the same, but I can relate to succumbing to just crying sometimes. Great hub! I look forward to reading more.


izettl profile image

izettl 4 years ago from The Great Northwest Author

Stacy~ thanks so much for commenting. Some days feels like I'm the only one. I'm learning to live with it- it's been 2 yrs and I have no joint damage yet but need to go on Dmards. I just had a baby one month ago at 37 so now I'm done with having kids and must go on more serious medicine. Not looking forward to it. I had no relatives with this disease but I did see my step dad's mother go through a bitter and painful life. I will make sure I don't become her- but she had it from 29 to 89 when she passed away last year.

It's totally a mental journey and thank you for your support on here.


Jeanine 4 years ago

Oh Izetti... I weep when I realize what you said in this statement... "some days I feel I am the only one"... I weep because I now know why you understand our journey as TS... thanks so much dear... you are a true hero...


izettl profile image

izettl 4 years ago from The Great Northwest Author

THanks Jeanine~ I didn't see this message until now. Yes, I may understand in general what trans go through. When I'm 36 and not able to do and be like other 36 yr olds, it's tough. I feel like I should be retiring, but we keep going on in this body and make the best of it.


Michelle 4 years ago

Thank you!! I have just been diagnosed a month ago, so it's good to know I will be ok!!


izettl profile image

izettl 4 years ago from The Great Northwest Author

Michelle~ It's been a struggle but it's not a death sentence. Ne wary of some of the medications out there. Side effects can be scary. Less is always better and realize you may not completely have your old life back but you can still have a life. Best of luck.


Anna Moore 3 years ago

Dear Izetti,

Thanks for sharing your eye opening story. Earlier this year I became very ill. No one knew what was wrong and as a result was misdiagnosed until I met Dr. Dorfner, who took the time to test my blood for over twenty tests. It was then that he found that I had an inflammation: Rheumatoid Arthritis. Like you, I read allot on the Internet and started avoiding certain foods and I have felt much better!..I have also changed my diet to a gluten free diet and feet l really well. I know that I must see the Doctor because in the end they know best, I think?. I was put on steroids without knowing what was wrong with me and I almost died!.. I will continue doing what is working for me. By the way Izetti, did you know that honey and cinnamon when put in a cup of warm water helps with arthritis pain, indigestion, constipation and all kinds of stuff?. I wish you the best and keep the faith. God bless.

-Anna/Willingboro, NJ


izettl profile image

izettl 3 years ago from The Great Northwest Author

Thank you so much Anna Moore- love to hear what others have gone through and sharing your wisdom.

    Sign in or sign up and post using a HubPages Network account.

    0 of 8192 characters used
    Post Comment

    No HTML is allowed in comments, but URLs will be hyperlinked. Comments are not for promoting your articles or other sites.


    Click to Rate This Article
    working