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.
The Progression of RA from a Sufferer’s Perspective – Part II Emotions
Please note that I am not an expert on rheumatoid arthritis. My goal is to discuss the disease as it affects me and my hope is give others who have loved ones with the condition so idea of what is like live with a chronic and debilitating pain characteristic condition.
For a patient dealing with Rheumatoid Arthritis, the physical and emotional aspects go hand and hand. Treatment in each individual is as different as is the disease progression and variation is in each patient. In other words, what works for one patient being treated may not work for another. The treatment of the disease plays an important role in the emotional and internal state of the patient. For me, I think each individual’s physical and mental states play an important role in the manifestation of the disease since any disease manifests itself uniquely to its host.
One of the first indications of a flare-up is extreme fatigue. This is a time when more sleep becomes significant and no matter how much you rest, it never seems to be enough. That extreme feeling of fatigue plays an overall role in your mental state. For me, I don’t perform as well as I usually do at my job. I try to stay home more than I would if I were feeling well. I can’t spend as much personal time with my children as I would like to and I ignore tidying up my home (I am a clean freak, but RA takes away a lot from me). Focus and concentration is quite difficult. Your fuse is short and you find yourself lashing at those you love.
As soon as the stiffness and pain kicks in, you are thrown back and ability to be as protective as you were before becomes non-existent. The pain and stiffness forces you miss out the activities and hobbies you love and the things that you like to do with your loved ones. I feel like a toxin is eating me up from the inside. The lack of energy zaps away your self-confidence. The lack of sleep is adding to your unhappiness and you feel lonely like no one can possibly understand what you are going through. It is like a ticking time bomb waiting to erupt.
Another fellow sufferer told me that the hardest part for her is not being able to plan because you never how severe or minimal your upcoming flare up will be. The embarrassment of the condition adds to your emotional state during your flare-ups. Motor skills slow down and the inability to concentrate kicks in. I sometimes feel I have no energy to walk from one place to the next. The same questions and thoughts are constantly on your mind. “I am too young for this.” “My joints aren’t damaged, why I am in so much pain?” “I don’t even look sick.” “When is this disease going to do its worst?” “Why do I feel fine one day, and next day I can’t even function?”
The longer I live with this condition, I can anticipate on the onset of a flare up. I know when to take it easy and not to overdo it. I know what stress turns into for me. I know with that with each passing day, it gets harder to hide my condition from my family, friends, co-workers and employers. I can be positive about my condition and my life when I am not having a flare up, but come a flare up, I am an emotional basket case.
I am currently following a combination course of treatment of Sulfasalazine and Hydroxychloroquine and I have hope. However, I am not sure whether they will be a cure for RA in my lifetime, but I have faith in my doctors and my treatments and all I can do is rely on my faith and prayer to live with the disease the best that I can. I am not only in this as there are millions of RA patients out there. I will talk about inflammation and improvement in later posts.
The Progression of RA from a Sufferer’s Perspective – Part I – The Roller Coaster
I have never really talked about my condition because it has taken me so long (years) to actually understand it or even to describe to those who do not have the disease. In addition, the outside world (those not suffering from RA) do not understand nor can begin to imagine what is like living with Rheumatoid Arthritis.
For me to tell others that “some days are good and some aren’t” doesn’t even begin to define the pain, the fatigue, and the general “just not feeling well” aspects of RA. I have learned that there is a sequence that my flare ups follow. It is emotional and physical depending on the severity of the flare up. Of course, not everyone has the same sequence, but every RA patient learns to have some understanding of their condition.
For me, it is best described as a roller coaster of pain, fatigue and not feeling well. In beginning, I felt like things just weren’t right. There is nothing really wrong expect a feeling that things simply just aren’t really right. Exercise and physical activity became a major task since my muscles always felt tight. Even though my muscles were responding to movement and I had more good days than bad – that feeling well never really lasted. I would start to feel lethargic, tired and sleepy all the time. (These were the first signs that something was wrong but despite seeking medical attention, there was never a “real” diagnosis offered by the many doctors I visited.) The stages would last for days, vary in terms of severity, and sometimes, I would feel just downright awful. At times, there is occasional joint pain, sometimes all-over body pain, nothing lasting long enough for me to seek immediate medical attention. As the disease progressed, I started feeling irregular twinges, sometimes stabbing-like pains that were quickly over. I started to feel consciously aware of that “not feeling well” feeling and aching never-ending pain-pain that went from sporadic to persistent.
By this point, I began to have an understanding of 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). You could even go further and associate that “not feeling well” feeling with depression. (Yes, it is that extreme.) By the time I was able to describe what I was feeling, the disease had reached a new realm. This included new spheres of defining the pain: acute aches, burning pains, stabbing pains and even impaling pain.
Sleep started becoming difficult. My weight was fluctuating (up and down) and there were periods where my vision would be blurred. Concentration started to become difficult. All of these symptoms are consistent to a flare-up, not necessarily what one feels every day. This is what RA suffers mean when they say “some days are good, some days are awful.” “A bad day” is when body is rebelling against you and feels like it is under attack. The irony of the situation (I call it God being cruel.) is that just when you think this is “normal” for you, the pain starts to subside (slowly), your joints start to move more easily, and swelling decreases. This is what I mean by the roller coaster. There are still stabbing pains, but the heat and aches slowly quiet down. Movement will return, again slowly and with great effort.
When your most recent flare subsides, you start to have to compulsive need to get things done. You go back to falling asleep much quicker and you start to feel more rested…This is short lived and just when are relieved that the flare has passed, a new one starts. Thus, the roller coaster of emotions and feelings I mentioned earlier. I will talk about the emotions of having a chronic disease and the process of inflammation in another post. I am currently having a flare-up and I really needed to get this out as this is an appropriate time, if any, to explain what a flare up a.k.a.[a] bad day(s) is/are like.
