Hey everyone! I hope you are having a great day! I’m A little exhausted because my daughter woke me up before 7 today and i was up watching the benefit concert last night! But i had an early Dr. appointment today so seeing as how hard it is for me to get up on my own I guess it’s good she woke me up. I made it to the appointment on time. Now, of course I am so tired and being a mom with RA can be quite challenging at times. When she wants to play outside or dance or run around, most of the time I’m too fatigued or sore to do anything and I feel horrible. This is why I am getting the joint replacements. So, hopefully when I’m done, I will be in less pain and have more mobility so I can actually be a better mom! And now having a 10 year old step daughter who always wants to go do something i feel guilty all the time because I can’t do a lot with them. The guilt is the worst.
Even though it can be challenging, she is the best thing that ever happened to me. She makes me laugh at times i really need a pick me up. She has the cutest personality even though she can be completely out of control some of the time. She is getting to be very helpful and when i have surgery, she kisses my “boo boos”. She can be the sweetest little girl. My step daughter is very understanding, also. She helps when i need it and i give her chores and allowance so she feels like shes earning money while she helps out. Sometimes, I just have to suck it up and no matter how fatigued or sore I am, i get up and let them chase me or dance with them because they are my favorite girls and I want them to have fun with me and not grow up only remembering mommy always being “sick” or tired and laying on the couch.
My biggest fear when I got pregnant with my daughter was that she will get JRA. My OB reassured me I can’t pass it down to her. There are other types of Arthritis that can be hereditary but according to my OB and her pediatrician, I have nothing to worry about. She has passed the age that I was diagnosed and shows no signs at all of any kind of Arthritis. What a relief! I know what it’s like to grow up with JRA and I would definitely NOT want that for my daughter. Between the chronic pain and stiffness, missing school and cruel kids, I’d feel nothing but guilt if I passed it on. Growing up, I always had a smile on my face at school or in front of other people, no matter how much pain I was in. But at home, I cried a lot! The pain was unbearable sometimes, especially on days I woke up stiff. On top of that, I was deformed in every joint and walked “funny” so a few kids did make fun of me. I had a lot of friends though because I didn’t let it bring me down and the few kids that did make fun of me were immature kids and I just ignored them. I usually never even mentioned it to my parents. Maybe once or twice I did when it really bothered me but that’s it.
I was always insecure about the way I looked and got embarrassed when I couldn’t participate in gym class or do regular things the other kids could do. I grew up with very low self esteem. Especially in high school when everyone in school was dating accept me. I got depressed at times but never showed it. I knew, or at least assumed, that the guys didn’t want to date a girl that walks funny and has funny looking hands when they could be with someone “normal”. But honestly, I had a good personality but I was very shy because of the insecurities so the shyness probably had more to do with it than anything. I know there are guys that don’t want to be with a handicapped girl but looking back, I think if I was more like I am today (talkative, funny, kinda crazy personality, etc.) I probably would have dated. My insecurities took over and if a guy talked to me i became very shy and quiet. I was too embarrassed to talk in front of class or just a group of friends because i assumed all they were looking at was my deformed hands. Once I graduated, I grew out of that and didn’t care what people thought and suddenly I had boyfriends! If it bothers them, it’s their problem. NOT MINE. Remember that! You are NO different than anyone else! You still have your own unique personality so forget about what you look like or what you can’t do and take on the things you can!! Smile, make jokes and act like it doesn’t bother you even if it does! Otherwise it will depress you and drive you crazy. It did for me and took me too long to realize it.
The best advice I can give kids, young adults or parents of a child with JRA is live life like anyone else would. DO NOT LET THIS DISEASE TAKE OVER YOUR LIFE! I did for 18 years and it wasn’t good. Granted I now have ptsd but it has a lot to do with other things that happened and the fact that I can not take care of my daughter when i get surgeries. It will go away and it’s under control now. If your friends are doing something you can’t do, cheer them on. Then tell them, “hey, now can we do something else that i can join in on?” Parents, treat your child like any other but also be understanding that they are in pain and when they sleep a lot they aren’t lazy. They are fatigued. And kids and young adults, STAY ACTIVE. I know that its easier said than done. Believe me. BUT I was told that i would be in a wheelchair by 10 years old and that i would never be able to have kids. I am 31 and no wheelchair and a 3 year old!! I kept going to physical therapy every week and aside from regular exercises, we did water therapy. Water therapy and swimming is THE BEST thing you can do. You are weightless so no pressure on your joints. If you don’t have a pool, join the ymca or a local public pool. I did swimming classes just for exercising during the winter and in middle school I did synchronized swimming. It really is the best physical therapy you can do!! I can not stress that enough. This is for parents and children. If you sit around when you are in pain, you are going to get stiff and your joints will eventually stay that way. They will bend and never move again, hence my deformities. But I stayed active as I started getting older by joining clubs at school, hanging out with friends no matter how bad I felt and when I was old enough i started working, going to school and doing community service.
So, no matter how embarrassed you are (and i still get embarrassed sometimes so its perfectly normal!), how much pain you are in, how much you THINK people are staring at you (even if they are) put a smile on your face. Talk to people with a smile and a joke and stay as active as your body will let you. If I did not do that, I would be in a wheelchair now. But i am living proof that if you stick with PT and do as many things that other people do as you can, you can live a somewhat normal and happy life. Its okay to have bad days. Its okay to get a little depressed or even feel sorry for yourself every once in a while. We are all human so don’t beat yourself up. Just have a “JRA SUCKS day” and then pick yourself up and say, “I don’t care! I’m ME and that’s fine!!”. You will feel better if you do! I promise!
I hope this helps some of you. Some of this is stuff I never told anyone but if it helps you get through the day, I am willing to share anything! Feel free to ask anything you want, comment on anything i said or give advice! Have a great weekend my new friends! And remember, you are unique and there is NOTHING wrong with that! There is a purpose for you and you will find it! I found mine! This is it! And you know what? I feel so much better about myself now that I know I may be helping just one person! Thanks for reading and sticking with me!
Love from the Bionic Mom. SMILE EVERYDAY!