RPF believes that sharing our own personal stories about living with rheumatoid disease is a great way to provide support for others. Knowing we are not alone in our experiences can be one of the most encouraging things. We thank our supporters who are willing to share their stories and help others who are going through similar situations. Let's learn from one another! Click here to share your story.
My name is Roberta Wands. I am married, have two grown children and two grandchildren. I live in a small beach town on the beautiful Central Coast of California. My passions in life include exploring the coast and going to the beach; attending concerts; home decorating; stained glass and jewelry design; traveling; and spending time with my family.
When Were You Diagnosed?
I was diagnosed with Rheumatoid Disease in July of 2012.
What Were Your First Symptoms?
My first symptoms occurred on February 2, 2012. I woke up that morning and instantly knew something was very wrong. I was extremely weak and could barely get out of bed or walk. The day before had been such a fantastic, energetic day and it all took me by surprise. This was day 2 of a 30-day vacation I had long planned for.
In the weeks following that difficult morning, I noticed that my hair was beginning to fall out and the lymph glands in my neck were swollen and painful. I also lost my appetite and felt exhausted.
I went to the doctor twice during my vacation. After some lab tests, I was told I probably had an autoimmune illness and they recommended I return home early and see a Rheumatologist. By the time I went home, I was having shortness of breathe spells whenever I did any kind of activity. That was the scariest symptom for me. I now know that this disease was attacking my lungs.
That was my first flare and it lasted 9 weeks. After that, I had a few months of feeling pretty normal, followed by another flare a few months later. This time it affected my wrist, hands, and hips. I started to hurt all over and my body began stiffening up every day, making it hard to sit, stand, or lay down without pain. I purchased a body pillow to lie on because it helped soften the impact to my body. My Rheumatologist diagnosed me at that point and put me on Plaquenil.
What Is The Biggest Way Rheumatoid Disease Has Affected Your Life?
Living with Rheumatoid Disease has changed every part of my life. I use to be a very active, driven person always reaching for my goals and dreams. Now I have to be very, very careful about how much I do each day because activity is a trigger for increased fatigue, weakness, and pain.
I’ve also been unable to work for over 2 years. I’m just now beginning to gain confidence in my ability to work, despite daily symptoms. I am starting a bridal jewelry and accessory business.
What Is Your Experience With Treatments?
I am currently taking Methotrexate, Enbrel, Folic Acid, Vitamin D, and Tramadol. Even on these medications, I still have moderate disease activity. I can only imagine what I would feel like with out the medications.
Whenever I begin a new medication, it seems to work amazingly well for a short period of time. That reduction in symptoms usually lasts for about 3-6 weeks. My doctor said our immune system adapts to these medications and that decreases their effectiveness. However, the medications DO fight the progression of this illness. Off of them, I find I am unable to get out of bed on most days. When I first started Enbrel last year, it allowed me enough reduction in symptoms to go on my dream vacation to Jamaica. I’m grateful that I was able to do that before its effectiveness started to wear off.
What Do You Want The Public To Know About Rheumatoid Disease?
Rheumatoid Disease is an aggressive, systemic illness. It is not confined to the joints, and it is not arthritis. Much like Lupus, arthritis is only one of many symptoms. It can also attack our muscles, heart, lungs, and other organs. That’s why medications used to treat Cancer are used to fight Rheumatoid Disease. It attacks our whole body.
What Encouragement Or Advice Would You Give Someone Who Is Newly Diagnosed?
If you are new to the diagnosis of Rheumatoid Disease, be sure that you become well educated about this disease and its recommended treatments. Knowledge is power, and you must become an advocate for your care.
Also know that you are likely to go through a long grieving period as you learn how to cope with the many losses that come with a chronic illness. It is truly life changing in every way. And like anything that radically changes our life, it takes time to adjust. Be kind and patient with yourself. You will probably really miss the life you had before Rheumatoid Disease came along. One of the things I miss the most, are the long walks I used to take on the beach.
There is one thing that has helped me deal with all the losses and changes this disease brings. One day I decided to stop focusing on what I could no longer do, and started focusing on what I COULD DO. That shift in perspective has been very helpful. I feel more empowered in my life as a result.