It has been a long week for me. My kids have been sick which means I am working a third job – nursing them back to health. That was hard when I had to nurse myself back to health as well. I had a third epidural steroid injection for my neck. The pain management doctor also told me that it would be the last time for some time and to meet with a neurosurgeon. It is not an idea I am thrilled with and I wish that this was not my last and only option remaining.
Part of being a working mom means making the decision when to let them stay home sick, when not to, and when you have to pass the duty to someone else. I have been passing the duty to someone else and I hate myself for doing. Passing it off means that I don’t stay home with them when they are sick and someone else does. I wish I could but between my own chaos of RA, fibro, neck and back pain, doctor’s appointments, work, etc., I wish there were two of me.
My twelve year old went to school this morning despite the fact that he has been wheezing from an upper respiratory infection. I didn’t force him to go. I told him to stay home but he had a science test and I figured he is better off at school then home alone. He has a follow up appointment with the doctor tomorrow but I am still worried because I am away from him. My three year old spent Monday with his Dad and Tuesday with his grandmother because he was sick and I felt guilty for that. My mom also had to attend a funeral on Tuesday so he ended up with his cousins in the afternoon and I felt guilty for that too. The epidural steroid injection appointment was Wednesday and I could not call off work on either day. I felt guilty again – do you see a pattern? 
On Wednesday, I sent my three old to day care even though he needed one more day in bed because I could not cancel the injection. I ended up picking him up early though and taking care of him through my own pain. I took the morning off from work yesterday to recuperate from the injection and the earlier part of the week.
You know that I am happy to see Friday. From five o’clock on, I can focus on my kids and getting myself to feeling better as well. Being pain, a lack of sleep, muscle relaxers and pain medications, I can hardly function. I need to rest and I am ready to do that.
This is what my life is like. It is demanding and while I would love to complain, I don’t really have time. After all, this is motherhood in the 21st century. Mothers work and they still have to be mothers. Chronic illness is also a fact of the 21st century and it accompanies parenting and full time employment. In some alternative universe out there, there has to be a better way. But since I watch too much sci-fi, I am sure there isn’t. The idea of a utopian society appeals to me. One that involves happiness and good health. Heck, maybe I could write a proposal to the president or something. Of course, he will think I am asking him to critique a novel which he has no time for and the whole think will be a waste of time. Any suggestions?
Have a great weekend everyone!
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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.
When I was a working mom, before RA, there was a lot of guilt. After, RA, it definitely is worse. I think we as moms are sometimes harder on ourselves than anyone else would be. Don’t be too hard on yourself. Try to remember that you are teaching your children how to persevere. No matter what they face in the future, they will be able to be okay… cause they watched Momma do it time and again, no matter how difficult it was.
Thanks Alicia. That is what I have faith in. I am teaching them that success is possible despite obstacles.
Being mom definitely can be a challenge especially when you add in illness of your own. This week I have taken on more than my body can handle and I am paying for it.
Lana, let the guilt go. Concentrate on all that wonderful things you are doing for your boys and for yourself. I bet if you started a list of the great things you do, it would go on and on and on. Honestly, I am always amazed at all that you can do.
You are absolutely right Cathy! Thanks for the pep talk!
Having RA and working is plenty hard on me alone. I don’t know how all of you do it while taking care of kids also. Fortunately our daughter was in her teens (thought she was 22) and for the most part self sufficient driving and working a part time job. I honestly don’t know how you manage it on your bad days. Hope you feel better soon.
With parenting, Terry, as you know, you can do the impossible. The guilt is there and sometimes, things can be hard be hard but overall, parenting teaching that you are capable of things you never thought capable and that you are stronger than you ever thought possible. I complain that it is hard, and no doubt it is, but I amaze myself often.