Posted in diagnosis, joint, pain, rheumatoid arthritis, stiffness, support

Finding Out

I am not here to claim I know anything. I didn’t go to college to study rheumatology. I am legal assistant with a degree in business administration. All I know is that my journey with rheumatoid arthritis has been a long one, probably about ten years plus and I was only recently diagnosed. I spent years telling doctors about my ailments and every time I was told that “this” is what was wrong with me, I would feel relieved. The diagnoses were always short-lived and at some point, I was embarrassed because I started to feel like it was all in my head.

In the beginning, I just felt like things weren’t right. Nothing was really wrong with me, but it was like this aurora of negative energy was hanging over me. I would feel lethargic all the time. I was never able to feel rested. Now, this is going back as long as ten years ago. I visited doctor after doctor and at some point started to feel like it was all in my head. I remember feeling worn out for days at a time and no one (not even my doctors) could understand why I felt so darn awful all the time.

There was occasional joint pain, and sometimes, my body just ached all over. As the disease progressed, I started feeling these irregular twinges, sharp shooting pain that would be over as soon as they started. I was quite aware that I wasn’t feeling well but I ignored the sporadic pains that I was having. Last year, at about this time, I found out and I was pregnant and somewhere around my fifth month of pregnancy, I started getting a horrible twinge in my lower back. I was also tired all the time and associated the pain and fatigue with my pregnancy. My hands, feet, and knees were swelled up from about my fifth month.
By the time I had my son in September, I had started to understand what I was feeling, enough to describe it to my physician – fatigue, pain, feeling of malaise (dissatisfaction with life), swollen joints, and low grade temperature (even chills). I knew that I wasn’t depressed and that something was medically wrong with me so I was persistent. My doctor ordered every test she could think of that was consistent with my symptoms.

Shortly, before I was diagnosed, my pain had reached new realms. I could define the pain much more clearly – acute aches, burning pains, stabbing pains and even impaling pain. Also, sleep started becoming difficult. My weight was fluctuating (up and down) and there were periods where my vision would be blurred, when I couldn’t concentrate, and I felt really awful. It felt like my body was under attack.

While I waited for my test results, I prayed everyday that whatever I had was curable. I wanted to be able to live a normal life, to be around for my kids and, at the same time, I wanted to feel normal. My doctor called the day before Thanksgiving (2008) and told me that it was time to see a rheumatologist.

I went through so many emotions in the weeks following my diagnosis. I was relieved, finally a confirmation that I was not insane. I was also confused as I knew nothing about RA. Then came questions – so many. How many going to live with this disease? How is this going to affect my children? I started to feel angry and self-pity. Why me? What did I do to deserve this?

I am currently seeing a rheumatologist every two months and I am a combination course of treatment of Sulfasalazine and Hydroxychloroquine. I get my blood tested every two weeks. I am trying to live as normal of a life but some days are in fact challenging. Stress turns into flare ups. I have even had to ask my employers to cut down on my work as the stress can really add up by the end of the week. I haven’t yet informed my supervisor of the reasons why I had to cut down but I know the day will come when I have to let her know. Right now, I am just trying to stay on my job as long as I can. I haven’t really had many pain-free days in the last year, but I am still optimistic that my doctor and I can find a treatment plan that will eventually (hopefully) put my RA in remission.

In the meantime, I am doing my research, looking for and giving support to others dealing with the disease and just counting all the blessings in my life. My goal is to help people understand RA so they do not have to suffer physically and emotionally as I did for a number of years. I started an online support group for moms living with rheumatoid arthritis on Twitter Moms and I am hoping that I can start a local group in the west side of Cleveland for RA patients. RA is a long and tough journey and no one should be forced to bear that burden alone.


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