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Nurse Mary’s Patient Guide RA coming in November

I have been working on this book for several years. It will be published in November in digital format as well as hard copy. The following is in the book.

We should all be saints. Saints generally had tough lives so that is not what we want. We need to drop the fear, anger and hopeless feelings. Many of us have RA. We eventually toughen up and make our lives good ones, even with wheelchairs, canes and jar openers. We are not helpless. Sometimes it takes a while to understand this, but it will happen. Listen to the stories of others. I have read many. I am proud to be in their company as they are good role models for those of us who struggle with RA.

This is the important part of the manual. It is your attitude, your commitment and your perseverance that will make all the difference in the world what your outcome, your quality of life will be. This is not easy. In fact, it may feel like just too much. It is not. After all the dust settles, we really don’t have any other choice but to manage our disease.

Rheumatoid arthritis is a serious, systemic auto-immune disease.  It is a chronic disease in that it will last a life time. It is a tough diagnosis. I was so sick when I was diagnosed that I was relieved that my agony had a name.  RA must be dealt with every single day. Treatment is determined by the severity of onset. With active RA, there is much inflammation in the body. Inflammation is not good. Treatment needs to be initiated quickly to slow the process of inflammation and to stop it if possible.

It is wise to understand what the disease entails and why it is managed the way it is. RA is progressive. It may progress rapidly, or it may progress slowly. Medication makes a difference.

Considering how RA manifests differently in different people, it makes sense that different people respond to different drugs differently. It requires patience and determination to find the right combination of drugs for you. Some drugs are effective for several years in one person, but the same drugs may be effective for a year in other people. It also takes time, trial and error and determination to find the right tools to manage your RA. Soon there will be tests to determine which drug will work for which person. We are not there yet.

Physicians are taught to make a diagnosis and to prescribe medications. As my doctor said, she is not trained to do more. She is the authority in the art and the science of medicine. There are things she will know that you will never find on the internet. She has synthesized a large amount of information and coupled with her experience she is an excellent team member to have in your camp. It is very important that your doctor listens very carefully to you. You will be the authority in managing your life when you leave her office.  There is a lot more to manage your RA than medications.

It takes that same determination and perseverance to find those modifications in your lifestyle that will allow you to have a satisfying life.

Remember you want your journey down the RA road to be smooth as possible, without too many bumps.

I discussed this book with my rheumatologist. She likes the idea. She said doctors cannot write this kind of book. It is a book that needs to come from the patient’s side of the table.

 

4 Comments

  1. I have had RA since I was 14. I’m 49 now. It started slow in one joint at a time. I actually went into remission in my 30’s for 4 years. I thought it went away but it came back. In my 40’s I started to get multiple pain in my body. I sought a rheumatologist because ibuprofen wasn’t working at all. I was put on Cimzia and felt better. After I got fired a few years later I lost my insurance and my whole body went into pain. Every single joint. I finally got medication through the state but it took 5 months. I’m now feeling great. I’m on Embrel and Lefludimide. I haven’t had pain in a year. Hopefully it will continually work until I’m healed. Thanks for your story. I feel blessed because right now I have a great quality of life. I actually wrote a blog as well. http://Www.livingeverydaywithra.wordpress.com. It started about me but I feel like everyone has a story to tell.

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    • I am very glad to hear your story. Embrel is a successful biologic. I believe it was the first one used in the States. Presently, I am on injections of methotrexate, meloxicam, and low dose Medrol. I have been on several of the biologics. I will go back on Actemra when or if I need something else.
      I was a professional photographer for 25 years. What do you photograph?

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      • I like to take photos of nature, portraits, and now I’m going to tell the stories of individuals who have been struggling with life’s circumstances and taking their photos. The blog started off about myself but now I’m doing others as well. I’m excited to see where it goes and hopefully it will help others.

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