Although Rheumatoid Arthritis Guy is not a father at the moment, he hopes to one day have children. At times I wonder to myself, how can I possibly live with rheumatoid arthritis and be a parent at the same time? Sometimes is seems like too much of a challenge. But as with everything else, I know that the right mindset and the right attitude do make everything possible.
For me, one of the true treasures of connecting online with others who live with RA has been being able to read their personal stories and see the way in which they are able to manage being a parent and living with RA at the same time. I am sure it’s not always easy (I doubt parenting in and of itself is always a snap), but these super parents show me that my dream of being a parent can one day be achieved, in spite of the illness with which I live.
As I cannot currently speak first-hand about what it’s like to be a parent living with RA, Cathy from The Life and Adventures of Cateepoo kindly offered to write a few words on this topic. Please welcome Cathy, our guest-blogger for the day!
Children of RA Parents are True Superheroes ByCathy
When my children were younger, they loved pretending to be superheroes. At age two my son wore Superman pajamas every single day. When people asked why he had on his pajamas at a restaurant, I casually replied, “Those aren’t pajamas. He is wearing his superhero uniform.” One of my daughter’s first words was “bat” for Batman. She wore a little Batman t-shirt because like her brother, she wanted to be a superhero.
Although my children who are now 13 and 11 have grown out of the dress up phase of being a superhero, they have not given up the spirit of a superhero. Since being diagnosed with rheumatoid arthritis five and a half years ago, my children have proven over and over what a superhero spirit is all about.
Like all superheroes, my children have a weakness which we learned early on in my diagnosis – it is me. They don’t want their momma to feel pain and when I do, they feel insecure and uncertain about how to rescue me. During one of my early days of RA symptoms my then six year old daughter came to me and asked, “Are you going to die momma?” Oh my! Since that day I have been fortunate to watch them discover their individual powers so they can feel strong while battling this disease with me.
Below is a list of strengths or jobs my children have discovered to help them fight the evils of rheumatoid arthritis. Not only have I been able to facilitate in this discovery of superpowers but I have been saved by them.
Once the symptoms of rheumatoid arthritis affect your body, it is something you will be dealing with off and on throughout life. My children were six and eight years old when I was diagnosed. Although they were fairly young, they both wanted an explanation of what was happening to my body. I gave it to them. I explained what RA is and answered each and every question they had. Many of those answers were, “I just don’t know yet. We are going to have to wait and see.” Each step along the way has been discussed. We have gone with the theory that the more we know, the more strength we have in defeating this disease.
Until recently, my children were with me almost 100% of the time. We homeschool, so they are home during the day. When I was first diagnosed they were too young to stay home alone but were used to attending dental, hair, and any other appointment with me. So, when I needed to go for visits to the rheumatologist, they went with me. As they aged and were capable of staying home alone, they still opted to go with me to this appointment. My son said, “Mom, you always feel sad when you see the rheumatologist and I want to be there with you.” It is a challenge to realize that your child is watching over you and trying to protect you from harm. But, I also discovered he needed to be my protector. It gave him a job to do in fighting what RA was doing to my body.
When I saw the naturopath for the first time the kids were invited to the appointment. She wanted my whole family to play a part in my healing process. My husband and children learned what foods were on my approved list. Believe it or not, if it weren’t for my kids, I would not have stuck to the diet as well as I did. I remember once making a homemade taco braid for the family while I planned to eat something else. It is out of this world good. I thought I would just have a small piece of the breading (gluten was not on my approved diet plan). Sophia (then 7 years old) blocked me from eating it. She got tears in her eyes and reminded me that we had to stick to the diet to see if I would feel better. After a year of eating gluten free and slowly removing gluten from our house, my children are now about 90% gluten free too, only having it at friend’s homes. This change which they made voluntarily has made gluten free eating so much easier for me. When there are not temptations in the house, I can handle this diet. Plus, the eczema my daughter had been dealing with since she was six weeks old magically disappeared and my son’s leg aches – gone! The diet was working for all of us!
When I have a flare-up in my shoulder, it freezes up and will not move. Any movement causes extreme pain. So, getting my shirt off and on by myself is near to impossible. One day my daughter said, “I don’t like when you are in pain, but I like being able to help you.” Each night before bed one or both of the kids would help me out of my shirt and into pajamas. I think like most of us, just sitting without a job makes us feel helpless. For my children, this simple gesture of help made them feel like contributors in my healing.
After four years of taking RA medications, I decided to stop all medications (Plaquenil and Methotrexate) and follow a 100% alternative path. It was really hard in the beginning. My body threw a temper tantrum which included striking out at each and every joint in my body. It was awful. My daughter created a system of faces to determine how I felt each day. First thing in the morning she would ask which face best described how I felt. Then she would mark it on the calendar. Not only did this let her know what to expect from the day, but to our amazement my daughter one day announced that I had more good days than bad for the month!
Each time I have a setback my daughter says, “Let’s think about the good days.” Talking about the good days with someone that loves me so much automatically makes me feel better and fills me with the desire to keep working at having more good days.
I have always encouraged my children to be active members of our family. As early as 18 months old they would sit on my bed and help me fold washcloths. As they grew older we added other jobs. I have always felt children needed to feel they contributed to a family. Never did I imagine the responsibilities they would take on. Now 13 and 11, my children automatically pick up grocery bags as we check out so that I don’t have to lift them. My son is taller than me now so when my shoulder is in pain, he runs to put dishes that are out of my reach away for me. They carry laundry baskets and walk the dog when I can’t. Truly, I am one lucky momma to have all the help they give me. Best of all, it never comes with anger or frustration. They know that on days I can, I will do the work but on days I can’t, their love for me takes over and they just do what needs to be done.
We have to learn to laugh at ourselves when dealing with rheumatoid arthritis. I have had numerous situations of dealing with rheumatoid arthritis where we had to just stop and laugh. There was the time I was making some improvements and did a little dance off the front porch while my family waited for me in the car and then ended up falling and scraping my knee. Instead of crying and feeling bad, we were able to laugh about it. Then there was the time I was stuck in the bathtub while my husband was at work and the kids tried everything they could think of to get me out. Again, we ended up almost crying we were laughing so hard. Sharing a good laugh over something so terrible can be liberating.
My children have had to take on a lot due to my rheumatoid arthritis. Do I sometimes feel like I am a burden to them? You bet. Do I sometimes feel sad that I am not running and skipping with them? You bet. Do I sometimes think they have to take on more emotionally than I ever wanted them to take on? You bet. But, we are a family. And family helps each other. I have learned much from my children. On more than one occasion they have reminded me that I do a lot for them and it feels good to be able to give back. They have reminded me that although we can’t run and play as we once did that I still hang out with them and remain an active part of their lives which they like. They have reminded me sharing our feelings with each other is important.
Children are strong. I think we often want to protect them from any harm but my experience as a parent with rheumatoid arthritis is they want to know the truth of what is happening and they want to play a part in our healing. Unfortunately, rheumatoid arthritis is not a private disease and when we can share the load with those who love us, the journey is so much easier. Our children have amazing abilities that can only shine when we allow them to show their true superhero powers. In my experience, our children don’t disappoint.
Thank you so much Cathy, for writing this post! I look forward to hearing more from other parents who are also living with rheumatoid arthritis.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy and Cathy!