tag:blogger.com,1999:blog-1235961938227118268.post2469834094584220082..comments2023-10-31T09:30:06.185-07:00Comments on Confessions of an RA Superbitch: Mary,Jesus & Joseph! Mamma had an epiphany, and its about time!superbitchhttp://www.blogger.com/profile/03207098211859414198noreply@blogger.comBlogger15125tag:blogger.com,1999:blog-1235961938227118268.post-52916614781804519892010-07-18T08:27:42.932-07:002010-07-18T08:27:42.932-07:00OMG, KirBir...Thank you :)OMG, KirBir...Thank you :)superbitchhttps://www.blogger.com/profile/03207098211859414198noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-28766817653391544592010-07-01T21:56:40.591-07:002010-07-01T21:56:40.591-07:00I was diagnosed with JRA at age six, after battlin...I was diagnosed with JRA at age six, after battling the disease for two years. There really is not a lot out there at all for people with chronically ill children. But things are looking up I think.<br /><br />Oh, also, I just nominated you for the One Lovely Blog award :)<br /><br />http://notstandingstillsdisease.blogspot.com/2010/07/one-lovely-blog.htmlKirsten Schultzhttps://www.blogger.com/profile/08358844153950812994noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-68082539695694761182010-06-25T17:53:54.363-07:002010-06-25T17:53:54.363-07:00In my post for today, I wrote about that struggle ...In my post for today, I wrote about that struggle with The List and the impact it has on me. A friend of mine once opine that if I never finish The List, maybe the damn thing's too long. Food for thought and maybe some day I'll learn to be more flexible in my expectations of myself.<br /><br />I admire what you do for your kid and you're absolutely right - not much out there for parents with disabilities. I once found this site that might be helpful http://www.disabledparents.net/. You're doing your best. That's all you can do.Lene Andersenhttps://www.blogger.com/profile/11223128667829847717noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-46630224710044536182010-06-19T23:56:01.660-07:002010-06-19T23:56:01.660-07:00Great post!
If only we Rheumies could understand...Great post! <br /><br />If only we Rheumies could understand the nitty gritties of a RAERs life in such detail....<br /><br />I am sure many RAers would share a similar concern about their child. <br /><br />Great learning for me as far as understanding basic day-to-day problems faced by a RAer is concerned.<br /><br />All the best & hope U conquer Ur RA soo.Dr. Akerkarhttp://www.arthritissupportboard.comnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-44441929504430481192010-06-17T13:56:00.014-07:002010-06-17T13:56:00.014-07:00Hey I am so glad I found a fellow RAer who is fies...Hey I am so glad I found a fellow RAer who is fiesty and stroppy and will NOT EVER EVER EVER let this horrid disease eat your spirit.<br /><br />By the way, I hate it eating my body too- I kind of pretend it isnt there and then I go out in the big wide world and find nothing in life is set out for a slightly derranged mother of 3 who really should know at 34 how to behave with a bit more serenity... NAH!<br /><br />I tend to have a wail, a moan at God, a blub into the duvet and then think- "thats that then" and get on with it.... embrace the wheelchair.... hmmmm<br /><br />no, no good still dont like it one bit!Jblacey https://www.blogger.com/profile/13984196667527277155noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-55999663602250393292010-06-15T13:22:02.132-07:002010-06-15T13:22:02.132-07:00As the mother of an Asperger's/Bipolar Son &am...As the mother of an Asperger's/Bipolar Son & myself limited by Lupus/RA and a host of other issues, BRAVA for having realize that no matter what your limitations are, you can find and create bonding time with your family. It is not easy & most times will have moments of interuptions due to the disorders we suffer. The popcorn analogy describes it perfectly. You sound like myself. I can not sit or stand in the same position for more than 20 minutes any given time. It's difficult to get your head around the losses we suffer but we quickly recover emotionally or mentally with the little things we gain. Hugs to you and yours. TazzyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-14619558092312638022010-06-10T19:10:56.123-07:002010-06-10T19:10:56.123-07:00Good for you for finding the zen in a lazy weekend...Good for you for finding the zen in a lazy weekend. I am sure your husband and son had a blast spending time with you and just being a family. Keep focused on those postives in your life postive energy brings postive change a wise person once told me. So don't beat yourself up for not feeling like you do enough for your son and celebrate what you can do. Even if it is only ten minutes on the floor playing trucks for the nine billionth time. He loves every second he gets and know that you love him. Take care SB and hope to hear more from you soon.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-78314507357320615022010-06-10T11:45:36.276-07:002010-06-10T11:45:36.276-07:00Lana -
You made me cry. God bless you wherever ...Lana - <br /><br />You made me cry. God bless you wherever you are today and during whatever it is you're doing. You deserve all the blessings I can bring you.<br /><br />- RA SBsuperbitchhttps://www.blogger.com/profile/03207098211859414198noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-20643033743627100272010-06-10T09:35:06.200-07:002010-06-10T09:35:06.200-07:00I hate the idea that I have limitations too but I ...I hate the idea that I have limitations too but I have learned to rejoice in other things. Like how smart I am or what a good mother I am. Sometimes, we need to put aside the things that make us feel weak and look at the things that make us feel strong. I understand the “tin man” analogy all too well. Most days, I’m begging for someone to oil me. What I do know, however, is that everyone of us has limitations – with or without chronic illness. Some of us have a disease that holds us back, others have fears or weaknesses and others struggle with their demons. <br /><br />I understand your limitations and your fears because as a fellow sufferer, I am dealing with the same ones. Sometimes, I have to remind myself to stop and smell the roses especially on the days where I feel like I have been punched repeatedly and pushed to the ground, and I am not ready to get up. <br /><br />You are a great mother and you have done everything that you can to prove so don’t be hard on yourself. And “normal” is overrated. Creating your own “normal” speaks wonders.<br /><br />“But yet, not much is written in the reverse: for the mom with special needs raising the child with very normal needs.” You do not realize how “special” you are especially to that little boy and you are doing a great job – don’t doubt yourself.Living It, Loving Ithttps://www.blogger.com/profile/03194896483256964340noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-15358109576583452422010-06-09T08:44:52.693-07:002010-06-09T08:44:52.693-07:00Well said! I felt and did the same things with my ...Well said! I felt and did the same things with my daughter (now 23) and my sons (now 16 & 17). Keeping our children active and making sure they have friends is important but so is the one-on-one time with mom regardless of activity. I too, would often receive the 'well behaved' complement when out. Good thing they don't see my sons at home, lol. Every Saturday we use to have family & friend night where my kids would invite their friends over, we would watch movies and my husband would make nachos. It was great! One advantage was their friends became accustom to seeing a crippled up mom in a wheelchair and it now causes no reaction. Now that my boys are seniors in high school they want nothing to do with mom or dad unless, of course, they need money or a ride from dad :) Compassion and acceptance, of us and others, are just two of the virtues our children develop over time.Anonymoushttps://www.blogger.com/profile/14236650902048267605noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-85192693120120141042010-06-08T22:08:25.368-07:002010-06-08T22:08:25.368-07:00Revelations are great, aren't they? So glad yo...Revelations are great, aren't they? So glad you had a relaxing weekend. Food for the soul. Your son is so blessed to have a mom that cares so much about him and that will sit on the floor as long as she can to play. It's so hard to function as a mom that wants to give her children a full life while being so limited. My kids still have trouble accepting that I can't always do everything with them that we both want to do. It's hard. But it makes them appreciate the things we can do even more. And I don't see anything wrong with your little guy modeling himself after a very able minded woman that is passionate about many things--namely her family.Kellihttp://rheumforgod.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-82826232717184851892010-06-08T14:30:58.190-07:002010-06-08T14:30:58.190-07:00Loved this post. My two-year-old and I spend day ...Loved this post. My two-year-old and I spend day after day alone together in a way just like you described - playing together for ten minutes, Mommy lying on the couch for a half hour, playing together for ten more minutes... I do take him to Gymboree, but man, it does seem impossible sometimes just to "walk him outside and place him on the grass"... And I do sometimes knock myself out trying to create "normal" experiences for him. Thanks for the reminder that there's value in the time we spend together, whether or not I can run around like other moms! He is growing up to be a sweet, compassionate kid, which is worth a lot.Remicade Dreamhttp://www.remicadedream.comnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-11504166718312791792010-06-08T05:43:05.843-07:002010-06-08T05:43:05.843-07:00Wow - this one was sure worth the wait!!
At times...Wow - this one was sure worth the wait!!<br /><br />At times, I too have thought "well, if I have to have RA, at least I can make it look good!" I am now the master of finding comfortable, chic shoes - my girlfriends are always jealous ;-)<br /><br />And I have to tell you, your worries about your son are the some of the same ones I had/have when I think about maybe being a mom. I think they're some of the same my husband had, too, when he wasn't so sure it was a great idea. We are both "control" people, so fear of the unknown is a big one for us. But, as I suspected and it seems you've found, things often do have a way of working themselves out. And isn't it amazing how small children often show us that?!<br /><br />I'm SO glad that you were able to have time away from the stressful, go-go-go life to relax and reflect. I hope you have many more weekends like this to come. <br /><br />All the best, always.<br />~Amber aka ValleyWriter aka RA (maybe) Mamma ('cause hey, a girl's gotta have her alter egos!)Anonymoushttps://www.blogger.com/profile/17712013548045942055noreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-54360217579977587882010-06-08T00:25:16.250-07:002010-06-08T00:25:16.250-07:00The one thing that no human being can do is contro...The one thing that no human being can do is control everything.<br /><br />Sure, you can try. You might even be successful in controlling ALMOST everything. But some things will fall through the cracks in spite of your amazing abilities and amazing determination, and then you'll worry and stress and develop ulcers because, dammit, you can't control it all.<br /><br />Your "free" weekend was a marvelous lesson in letting go. You allowed yourself, your husband and your son to simply "be" together. No one controlled anything. And it felt SO good.<br /><br />I hope you'll allow yourself to "lose control" more frequently in the future, SB. Your son will be just fine with his "disabled" mother because the one thing that she really CAN control in his life and in hers is her love for him. And that's all he really needs, right?<br /><br />Great post. Great lessons. Hang loose and relax a little, will ya?<br /><br />Hugs for you,<br />WrenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1235961938227118268.post-16233388508671905562010-06-07T20:47:27.339-07:002010-06-07T20:47:27.339-07:00You have that bond because you spend time with you...You have that bond because you spend time with your son. Kudos to you!<br />You don't send your son to a different room and make him watch television all day so that he'll leave you alone. You like him and do things with him, and arrange extra opportunities for him, too. Great parenting!WarmSockshttps://www.blogger.com/profile/12192702662231361355noreply@blogger.com