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Starting the journey, one woman's look at living with Rhuematoid Arthritis

Updated on July 30, 2015

Starting the RA journey

I walked away from my doctor’s appointment after being told that I had a severe and aggressive form of Rheumatoid Arthritis depressed but mostly scared. The doctor had said that she was recommending a drug that was in the “chemo class” and that the side effects were possible lung infection, liver impairment, hair loss and stomach upset, and more. Vanity is a funny thing. I don’t think of myself as a vain person but the minute I heard hair loss, I stopped processing all the other side effects temporarily. Hair loss?! As I was driving home, I started processing all of the other side effects and by the time I got home, I was an utter mess. I had worked myself into a frenzy. The doctor had scheduled a phone consultation to discuss the medication to give me time to decide whether or not I wanted to go down this path. I did a lot of research on the internet and could not find any alternative. Without the medication (and the possible side effects) my joints could quickly become compromised leaving me disfigured or in need of joint replacement not to mention that the lungs and heart can be compromised due to inflammation. What choices did I have? I could not come up with any.

When I told my husband, he was not able to grasp why arthritis would require chemo medication. The more he read about it, the more he became concerned. We did not sleep well for the next three nights. Was it the prednisone that the doctor had started me on or worry? Possibly both.

I called my mother and broke the news to her. She was devastated and in some ways blamed herself as she believes that the gene for this disease is from her side of the family. She cried for me and I cried for myself which simply reinforced the anxiety I had about this disease. Chronic illness. Life altering. Severe pain. These are descriptions that I read on the internet. Pretty scary stuff so far.

I started thinking about my own mortality. When something like this comes along you start looking at things differently. I found myself losing patience with people when they were being petty when so many other people are dealing with larger problems. I found myself resenting those around me that are healthy. I didn’t want to do this but the thoughts came rushing in. I found myself thinking morbid thoughts such as, how long do I have to live? My husband has been great. He has always given me a fresh perspective when I am struggling with a crisis. He constantly points out that there are so many things that are worse than RA. Life does not end here but rather it takes a different direction.

My days are no longer lived filled with unlimited energy. I find myself tiring easy. For an active person this is difficult. However, I am finding new and creative ways to force myself to take things a little bit slower. I take naps if I am tired. I take time off when I need it. I am giving myself permission to slow down.

I read with amusement a rambling comment that I wrote on my computer which said, “Well, it has been six months and I can officially say that the Mextretrate is not working. My hair is starting to fall out at an alarming rate. I feel nauseous where as before, I did not. My joints are starting to hurt more and more. Ugh. I have an appointment with my doctor in two weeks for the 6 month check-up. It looks like I am going to have to re-evaluate my meds. Double Ugh! I have also been experiencing sores in my mouth. Oh, let’s not even go into the dental issues. I have a special prescription for toothpaste. A cap that I had replaced last year is already starting to deteriorate.” Oh, what can happen in a year.

Well, it has been a year and half since I was diagnosed with RA and started medication. I can honestly say that I feel better than I have in years. I am exercising by swimming and I go the local gym where they have 29 minute workout program using different machines. I am also thinking about signing my husband and I up for a dance class. He doesn’t know it yet. I have changed the way I eat as I am on the Mediterranean diet and it seems to be helping. I try to take a gentle yoga class but I continue to struggle with the yoga positions. To sum it all up, I am adapting.

I have read about people with RA who successfully treat it without medication, using a more holistic approach. I truly wish I was one of those people. For me, the RA came on fast and struck hard. The pain was unmanageable and it was impacting every joint in my body. It has not been an easy journey getting to where I am at today but I laugh more and can go through almost an entire day without pain. If you’re wondering, I stopped losing my hair and it looks healthy although a little thinner.

So, why am I sharing this? I want you to know that you are not alone. There are things that you can do or try that might make you feel better. I have found laughter again and I hope that through my ramblings I will help you find your smile and laugh again as well. Whatever you do, don’t give up on yourself. There are so many options to live a healthy and active life.

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