This is a second favorite post of 2010. It goes to January 20, 2010.
The Modern Mom
A modern mom is
- Part breadwinner, part breadmaker
- Part teacher, part coach
- Part philosopher, part realist.
Where does Rheumatoid Arthritis and Fibromyalgia fit into the picture? They don’t. If my joints and muscles could talk, they would agree. About two years ago, I joined the ranks of mothers living in chronic pain.
I was thirty-two years old when I was diagnosed with Rheumatoid Arthritis. Two months later, I was also diagnosed with Fibromyalgia. Here I was, a young mother with so many dreams for myself and my children. But one day, everything changed. A couple weeks after giving birth to my now 16 month old, I woke up in the worst type of pain imaginable. Every joint in my body throbbed and my flesh felt like it was on fire. My entire body felt swelled and I felt I was dragging a five hundred pound body off my bed. I could barely stand and I could barely walk. Meanwhile, I had a small baby crying next to me and I needed my mothering instinct to kick in.
At the time, I thought it was a flu bug or some type of infection. It took me a couple weeks to be able to walk without being in the most unimaginable pain. I had scheduled an appointment with my doctor within a week. I had no idea what was wrong with my body. Here I was 32 years old, a young mother whose children needed her, and the only thing I could think of was, who would take of my children if anything happened to me? Needless to say, I was scared like I had never been scared in my life. When I finally got myself to calm down and see my doctor, I thought she would tell me I had some severe postpartum infection and that antibiotics and rest would cure me.
My doctor called me a couple days later with blood test results and told me that I had rheumatoid arthritis. I thought: “Oh my God, she had to be kidding! Arthritis was a disease that affected old people. I was too young and I had two young children that needed me, and I was just received a diagnosis for a disease that was going to put me in a wheelchair! Who was going to take care of my new baby and my nine year old?” I spent the next couple of weeks feeling sorry for myself and wondering what I was going to do now that my life was over. I vented my frustration at my husband and anyone else who got in my way.
I wanted to take care of myself and my joints would not cooperate. My sister came to visit at precisely the right moment when I felt like I was at the end of my rope. At the time, I felt like RA was a death sentence. I didn’t want to go on living with my body breaking down, and not being a good enough parent for my children. I was in pain everyday and I wasn’t even in control of my hands. I could not even hold a fork let along take care of a new baby and if not for my sister, I could not have gotten through those first few weeks with a new baby.
The first visit to the rheumatologist pushed me to the point of depression. In the waiting room, I was surrounded by elderly people using walkers, crutches and wheelchairs. Here I was in my 30s, pacing myself because of the pain, and looking at my own future. I wanted to wake up from this nightmare and after leaving my rheumatologist’s office; I cried in my car and prayed to God to heal me.
In the beginning, I thought I had accepted RA right away, but it I did not until many months later. I was depressed and feeling sorry for myself because of RA and I didn’t even realize how depressed I was until recently. Somewhere between my diagnosis and last Fall, I realized that I had to fight for myself and for my family. I had to face my diagnoses and live with them. RA had changed my life and along the way, I changed my lifestyle. My sense of humor, my determination, my faith in God, my strength, and my love for my children has forced me to see that RA cannot stop me from living my life.
According to my rheumatologist, a few days after giving birth, I had my first major flare-up which is not usual with rheumatoid arthritis since RA calms down during pregnancy. Since then, of course, my flare-ups have not been as bad. Unfortunately, I have not had a pain free day in a long time.
Nevertheless, I am still the same mother I was prior to my diagnoses. Sometimes, I wish I was a better mother and that RA didn’t limit me, but it is something I have learned to accept. I am a still a modern mom, RA and all.
I am still:
- Part breadwinner, part breadmaker
- Part teacher, part coach
- Part philosopher, part realist.
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About Lana
Since I started at Blogger, it took me two years to pull together an “about me” section which I have now moved here. When contemplating about writing an “about me” section on my blog that would talk about my diagnoses and the effect that they have had on my life. Every time I start to type, I am not sure what it is that I want to say. I just know that what I have to say has to have a profound effect on those reading the words and having all the same questions that I have had for some many years and even the questions that I still have.
When I was enduring a variety tests and looking for answers, all I wanted was closure and that meant an answer for what was going on inside of me for so many years. At some point, I thought it was normal to feel sick everyday of your life because if it wasn’t normal, then it would mean that I wasn’t normal. After years of misdiagnosis, mistrust towards so many medical providers and frustration at the lack of answers, I started to wonder if what was wrong with me was all in my head. It took time but eventually the answers came.
From the day that I received my first diagnosis, rheumatoid arthritis, I promised myself that RA would not win. A couple months later, I was also diagnosed with fibromyalgia. In beginning, I went through a variety of emotions: Fear, denial, optimism, frustration, numbness, and skepticism. My emotions would change several times day and hope and acceptance were a long ways down the road. In beginning, I thought that I would fight the inevitable but it didn’t take very long for the diseases to win. I became depressed even though I insisted to everyone in my life that I was not depressed and I kept going on because I had to. I leaned on my love and dedication to my children as my coping mechanism. I knew that no matter what I was going through I still had to be their mother.
The years of trying to find answers taught me and gave me patience, dedication, strength and survival. I don’t know who I would be without that experience. So many times in my life before RA and FMS when life handed me lemons and I always threw them back. With RA an FMS, I can’t throw the lemons back because it doesn’t work that way. I just have to keep reminding myself that the lemonade will get sweeter with practice.
Steroids, a lack of energy, and physical pain take a toll on you. I stopped stepping on the scale because I am tired of the weight gain. I stopped visiting friends and family who think that my conditions are simple and that I am just being a drama queen. I stopped trying to be perfect, having an impeccably clean home, and trying to be everything to everyone. What the illness does to us, we cannot control. How we respond, how we choose to fight back, and how we go on is our defense against the war waging inside of us. I am not saying it will ever be easy but it is what makes us exceptional.
I can no longer carry my toddler and sometimes, it takes a lot out of me to make it into work every single day. There are nights where I lie awake staring at the ceiling whispering and repeating the words “I am in so much pain” until the sleep finally consumes me. I didn’t invite RA or FMS in my life. They just showed up one day and never left. I used to be a planner and my diseases ruined any plans that I will ever have. When I was pregnant with my now toddler, I scheduled the induction the day after I started my maternity leave because I wanted to spend as much time with my kids as I could before I went back to work. I refused a C-section when it looked like things weren’t progressing because it would ruin the “plan,” and now, I don’t make plans. I just live for the moment and if there is anything I hate more than the unexpected, it is disappointment and failure so I stopped planning. If I have to live side by side with my conditions, I have to understand that I cannot always win.
Imagine being a dark room and trying to make your way around. Then, imagine that you find a light switch and the room becomes dim, not bright, but enough for you to navigate your way. For years, I was in the dark about what was happening to me, and then one day, the room became dimly lit. Of course, I wanted closure but instead I found that there were more questions than there were answers. I learned that I had to change my perceptions on what closure meant to me so that I could gain some normalcy back into my life now that I had some closure.
One of the things that I do know is that I am not alone and that there were so many exceptional people who, like me, are looking for closure, answers and normalcy. I share my experiences because I want to live a “normal” life and I want others to see that it is okay to have a normal life and to keep dreaming, trying, believing and looking towards the future. I write about my life with RA and FMS, my diagnosis, and my quest to find answers and I continue to do so because when it gives others hope it gives me hope too.
My blog is about who I am, my struggle for answers, and how I have made lemonade. I have found through my experience and the experiences of others dealing with the same conditions that living with arthritis and/or an autoimmune disease gets easier even though the disease gets harder. RA and FMS may control how I physically feel but they do not control who I am or how I choose to respond. It is never going to be easy and some days, the emotional part is worst than the physical but we all struggle with something and for me, it is RA and FMS.
I am the patient advocate for two Alliance Health online communities, Arthritis Connect and Fibromyalgia Connect. It is something I am very proud of and I ask that you join me so that you can find answers and give support to others who have a multitude of questions.
