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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.

 

I’m Back

I have completed chemotherapy and I have completed radiation. At this point I think I am cured. It’s been a long year. I am grateful as I have friends who are not as fortunate.

In addition to  being diagnosed with another cancer this year, my computer died. The new one arrived Friday. It is nice to be up and running again.

My RA doc has moved on to the VA. She is going to be working on research projects as well as seeing patients. I have followed her as I am a Vet.  She is happy. She had spent several of her student years working at the VA and appreciates its culture.

She has ordered Voltaren Gel for the pain I have in my feet. The pain is a problem for me when I go to bed. Voltaren is a topical gel of Diclofenac, an anti-inflammatory. It arrived this morning. I will let you know if it works for me.

Albuquerque has been one of the cold spots in the nation. It’s been down to 2 degrees at night and the teens during the day. We’ve had three inches of snow here. Thankfully, all is improving. The nights are back up to the 30s and days to 40s. I will never complain about our lack of snow again.

I hope all is well with all of you. Working with a keyboard is so much nicer than going for chemo.

 

Better living with RA: Part One

 

Rheumatoid arthritis (RA) is considered a chronic disease. A characteristic of chronic disease is its disabling features. Walking may become more difficult. Activities like dressing, preparing meals, performing personal hygiene and completing household chores become harder and harder. Life becomes increasingly challenging until a person hits a crossroad where they make changes in his or her life or gradually slips down the slippery slope into a dependence that requires custodial care and no turning back.  RA is known for making life challenging in many ways. Like cancer, diabetes or all the other autoimmune diseases, being able to live with RA starts by making changes to our lifestyle.

Pain management is a big concern for those with RA. There is no going around the fact that pain is a common feature of every day RA life. There has been much written on managing pain. Managing pain is possible with the help of professionals skilled in pain management. The topic requires its own space although these suggestions will help lease the burden of that pain.

For now, let’s look at some simple changes. Foot pain is a big issue for me and for many with RA. Before I changed how I dressed my feet, I could barely walk. I saw a podiatrist who recommended shoe changes and customized inserts. I started out with a selection from a New Balance store and then progressed to wearing special shoes with custom inserts. My feet still have problems, numbness and night pain, but on a day to day level my feet are comfortable, and my mobility is normal. It was a simple change but had a dramatic effect on me.

I am on chemo for a current cancer. Fatigue is a big problem for me as it is for an RA flare. Keeping clothing uncomplicated can save a lot. Nightgowns take less energy than does putting on PJs (yes, it is that bad). Summer dresses such as wraps are easier for work, fewer pieces. Pull ons and pull overs make summer living easy.  Yes, we need a certain number of zippers and buttons but adding slip ons makes life easier. Even with button up shirts unbuttoning the top buttons and slipping over the head gives fewer buttons to close.

Shoulder pain is its own problem. Loose clothing is easier to manage as are knits instead of fitted jackets. It is important to us individually that we look our best.

Consider it a personal challenge to select clothing that is easy to wear as well as fashionable. It will boost your spirit as well as making the morning routine less stressful. These are just a few suggestions to get your mind on a tract that will make life easier as well a keep your fashion sense satisfied.