Good Morning Everyone! I wanted to take a minute to introduce myself. I decided on the name "Sports Mom" because basically that is what explains me best. I am a wife of 19 years and have two wonderful blessings which just happen to be my children, a 14 year old baseball player and an 11 year old softball playing cheerleader. I spend every moment trying to overcome this stupid disease so that I can be the Mom and Wife I so desperately want to be!! Although I am sure I had the disease a good 4-5 years prior I was diagnosed in Feb 2010 first with RA and then after about 2 years my Doc figured out that I had been miss diagnosed and I actually had PsA. I have battled (as I am sure most of you have) with many medications trying desperately to figure out what is the best combo for me. I will begin Remicade on Jan 23rd and I am praying that this is the answer that we have been looking for.
Welcome to the group! The change in diagnosis shouldn't have made a huge difference either way, as there is a huge overlap in treatment. I was diagnosed with PsA when I had young kids too. My son was not quite a year old. It definitely makes it challenging, but you are the mom that your kids know. When my son was little, my fatigue meant that we took long naps together. Bonus for both of us! My point is, while you may not be doing all that you desire to, you are still the best mom to your kids.
Hello, and welcome! I'm pretty new to the group myself but I wanted to tell you that this group has really helped me a ton trying to understand what this disease means and trying to figure things out. So I hope you will find the help and support you need as well, and I hope you feel much better soon!
Thank you very much Ladies! Stoney, you are right I am the Mom that they have now, fortunately and unfortunately my kids remember a healthy Mom too. But I am blessed beyond measure, my husband and my kids are true gifts from God, they are very understanding and they are all very helpful!! I am trying to make the best of my situation just as you say Stoney and I am trying to take time out to enjoy the things I can do like board games and such!
Dear Sports Mom, I understand if you feel regret and possibly guilt that comes from not being the “ideal” mother that you thought and dreamed you would be. I have two boys nine and 11 years old. Before the psoriatic arthritis and other medical issues, I was certain that I would be riding my mountain bike with them, running long distances with them, and teaching them my competitive soccer skills and tricks. Funny thing is neither one of them seem that interested in soccer, running, or biking. So, I guess I’m off the hook there. LOL lesson learned is that there is no “ideal”. Unfortunately, like you, my children are aware of my ilness. They do appreciate me and any time that I give them. However, I do try to address head-on how my health may impact or stress them. They are sweet and they worry about me, which is only normal. I want to reassure them that although I can’t do all things physical and I fatigue quickly that I am always there in spirit and in love and that I am always praying for them. Ultimately, God is in control and that gives all of us comfort!
Lyndsey,
I am just seeing your response. Thank you so much for your kind words!!! You are absolutely right and it sounds like you definitely understand!
Hi Sports Mom, and welcome! Firstly, I hope you get relief from Remicade. I didn't read your profile, so don't know if you've tried other biologics yet. Anyway, I was lucky in that my diagnosis wasn't until the caboose of our four kids was a senior in hs, but I did have a couple grandkids by then--now we have 5 of them. Secondly, I can't imagine how hard it must be--if PsA is affecting your back--to sit and watch the sports events (hopefully it isn't in your back) on those hard bleechers! Lastly, even when your kids are grown up it's difficult for them and the grandkids to see you not your perfect healthy self--the toughie that cared for them when they were sick or down. Our kids just can't get used to it, and I know they wish they could have their old active mom back. I've been a really active grandma over the past 10 years, but have had to slow down this year because of back pain. My 3yr old granddaughter, at the 6yr old granddaughter's birthday party yesterday came up to me and wanted me to pick her up. I said honey grandma can't lift you anymore, but I can squat down and hug you. She hugged me for two minutes straight--just hugged, no words. Then she leaned back and just looked in my face. Everybody thought it was the sweetest thing they'd ever seen. I've been with her several days a week since she was born--the other grandkids, too, but lately not so much. I do have hope things will get better. Good luck and I hope you get feeling better and can be more active with your kids!
P.S. I just read your profile....I guess you have tried some biologics. Well, then, let's hope remicade is the one that finally works for you!
Grandma J yes Mam unfortunately it is most definitely in my back, my husband always brings chairs for us to sit in. We have learned the art of accomidating so that I can be a part of it all!
That is absolutely precious about your Granddaughter! There is nothing like the love and acceptance of a sweet child!