Posted in Fibromyaloga, rheumatoid arthritis

A Reality Check

In the past few months, I have had some really good days and very few bad ones.  I had a short lived flare up recently that only lasted a couple days to my relief.  With two days of flaring pain, I found myself thinking about how much has changed since my diagnosis. For those of you who have followed by blog from the beginning, you know the history so prepare for a walk down memory lane.  If you are a new follower, you will want to hear this especially if you have only been diagnosed in the past three years. 

A Diagnosis

I am going on four years since I was officially diagnosed.  I had symptoms of RA and fibromyalgia that went as far back as ten years prior.  Repeated trips to multiple doctors came short and my doctors would try to treat my symptoms.  My breathing issues were believed to be asthma and my unexplained symptoms resulted in anxiety and depression medications.  It was not until a life changing moment in September 2008 that my diagnoses were officially confirmed.

A few days after giving birth to my now three and a half year old, I awoke to the inability to walk or use my hands.  My entire body was swollen beyond belief and my fingers were curled into my hands as if forming fists.  At first, I thought I had some kind of postpartum infection that antibiotics would cure but when the words “rheumatoid arthritis” were spoken by my family doctor, I knew that my life was about to change.  At the time, however, I thought it was for the worst.

Here I was only 32 years old and feeling like I was 80. I felt defeated and as if I was just handed a death sentence. I did the only thing I could do given the circumstances.  I picked up the phone and called my sister and told her I needed her.  She came to stay with me when my son was only two weeks old and stayed for about three months.  If not her, I am not sure how I could have taken care of a newborn when I could barely hold a fork to feed myself.  That flare up that I had eventually subsided and under the care of rheumatologist, I was able to return to work. Six months later, I was also diagnosed with fibromyalgia and that blurry picture of my life for the previous ten years finally became clearer.

So much has changed since those first few months after I was diagnosed.  At the time that my son was born, I had planned on taking my LSATs and attending law school.  When RA came into my life, I realized that I could not work full time, spend time with my kids, attend law school, and be sick. I think that was the biggest reason I felt so defeated. RA had taken from me the person that I was before.  I was an overachiever and RA made me feel incapable. However, a lot of time and patience taught me that I can live successfully despite RA and that I could manage my condition.  Most importantly, I learned that I could continue to have dreams and how I could works towards them.  It was not until I fully understand that, even though I was sick, my life wasn’t over.  So, I decided to work towards a master’s degree in legal studies through an online program at a slower pace and decided that law school wasn’t in the cards at least at that point in time.  I finished up my degree last summer.  I also went on to do health advocacy work for fibromyalgia and arthritis.  Additionally, I left my stressful job and went on to one that was more challenging but less stressful.  I strongly believe that living with chronic illness doesn’t mean that your plans have to change.  The only thing that has to change is the timing and the path.

I Am Not Just Coping

People have this misconception about living with chronic illness. They think we are getting by simply being able to cope.  What they don’t realize is that coping is only one part of living successfully despite chronic illness.  Coping means very little without thriving.  When people ask me what RA has taken from me, I respond by telling them that for everything RA took from me, I took something back.  I think my ability to see past the limitations posed has been the biggest reason that I haven’t let RA have its effect on my self-esteem.

When a person is diagnosed with a chronic illness, the first piece of advice they get is to not the disease define them.  Personally, I think that is the worse advice you can give to someone coming to terms with a new diagnosis.  The fact is the disease does define you because it forces you to make choices that revolve around the disease such as lifestyle changes.  If you focus on the disease not defining you, then you are not going to make the necessary changes to live with and manage the disease.  I strongly believe that to thrive despite your chronic illness, you have to be willing to acknowledge that you not only live with it but also alongside it. Moreover, you must accept that some things are out of your control (i.e., the physical aspects of the disease) while others – how you respond and how you fight back – are within your control.

I thrive and cope because I no longer sweat the small stuff.  I tell people that I am Type A with RA because I have been, and probably still am, a person with certain expectations and I sometimes have a bad habit of expecting others to live to my standards.  RA has taught me that I have to ask for help if I don’t want to be overwhelmed and I have to accept that sometimes the completed task doesn’t have to meet my standards.  I still work and maintain a work-life balance that isn’t as perfect as it was four years ago but I know how grateful and how blessed I am. This is due to my experience learning to cope and to thrive despite the limitations that RA has imposed upon my life.

Everything is Possible

My kids remind me daily that everything is possible. When I was first diagnosed, and for the entire first year and even into the second, I found myself saying that RA kept me from being a good parent.   It has taken me a long time to realize that while RA can keep me from being the parent I think I want to be, it still doesn’t keep me from being a good parent.

A year after my diagnosis, my 12 year old, who was nine at the time, told me that he wanted to be important just like me. When I asked why he thought I was important, he told me that I help people every day and he looked up to me for that.  That conversation is one that I have taken with me every day since.  Even when I feel like RA and fibro are ganging up against me, I know that my children look to me to set an example for them.  I want them to see that success is possible despite obstacles. There are days when I feel both physically and emotionally exhausted and I look at my boys and I see how independent, strong and empathic they are despite chronic illness being a part of all of our lives, and I remind myself that they got that way by watching me. 

To me – a flare up is just a small set back in a long journey towards healing.  My children are a part of that journey and while they think that they need me in their lives, they don’t know that I need them even more.  Sometimes, all it takes is a smile or giggle after a long day for me to see how truly blessed I am.


9 thoughts on “A Reality Check

  1. I was also 32 when I was diagnosed, but I know it was devastating to you, having a newborn and going through all of that. 😦 You are right — RA does define you to some extent and it does change the way you will have to live — sometimes forever. I think I am still in the coping phase… I haven’t quite gotten to the thriving yet. Some days it feels like it is struggle to keep my head above water and stay on top of things. Thriving will come… someday. Thank you for writing this post and your blog. It is an encouragement to me.

    1. Thanks for your comments Ali and kind words. You are right – thriving will come. I do remember feeling like I could barely keep my head above water but these days, I know what to expect so I am able to swim. 🙂

  2. That must have been utterly terrifying and heartbreaking after your baby was born. You’ve been through so much and do such a wonderful job encouraging others and expressing what so many people experience. I really like what you wrote: “everything RA took from me, I took something back”.. It makes me think that despite living ‘alongside’ an illness, someone can still feel empowered to make life choices that bring happiness despite an illness

    And your children sound as if they have gained much wisdom from you.

  3. Deborah,
    It has taken me a long to really grasph the idea that happiness is a choice and not a circumstance. When I was diagnosed, I expected that my life as I knew was over. I never imagined the lessons I’d learn or all the great things I would get to do. As always, thanks for visiting my blog and for your kind words.

  4. What a wonderful, positive, wise and inspiring post, Lana! “If you focus on the disease not defining you, then you are not going to make the necessary changes to live with and manage the disease.” That’s one of the most profound truism about this disease I’ve read yet, anywhere. You really have come a long way since your diagnosis. Your son is right–you really ARE an important person. 😀

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