Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 I have to vent here for a minute/////// I just need to say Im sick of being treated so differently since this sjogrens thing affected my eyes so badly. Being on disability is hard and can be very boring but half the people I know act like Im getting some kind of good deal HHHAAAA. Just got home from running around with a friend who is now so different from when we were friends before all this happened, and I cant tolerate her negativity or bossiness so Ill just have to limit any time I spend with her, what's the point when you feel like you could have had more fun by yourself? I am working with a guy through SRS to try and find a part time job of about 2 days a week, so please pray that I find something so I can get some$$$$$$$$ and meet some new people. take care Colleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 colleen-am sorry that you are being treated differently and yes it seems that it does happen-I was really outgoing and involved in many things but when I no longer had a voice then it makes a huge difference in my life. Not for my friends but also for me-they cannot hear me and get frustrated-I get frustrated too. I usually don't go out much in crowds anymore, but am trying to break the cycle of depression I feel by adding more activities that feels safe for me. carol On Sun, 5 Aug 2001 22:52:19 EDT ccomm777@... writes: I have to vent here for a minute/////// I just need to say Im sick of being treated so differently since this sjogrens thing affected my eyes so badly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2002 Report Share Posted January 16, 2002 Lori, My is only (4 months) and I haven't crossed this bridge yet with schools but I am gearing up even now as I have heard some stories:-) I have already started telling my childrens teachers about and how he will be included with their classes some day:-) Sounds like you are possibly in for a time, but you sound like you are pretty good at knowing what you want, and sounds like she's doing fabulous, so I would point that out to them, show them. It is such a shame that people hear " DS " and automatically think " DS-disabilities " instead of the wonderful child and all of his or her abilities. I wouldn't back down and would take it straight to the top if you had too. I am not sure if the state board of education would be of any assistance or not-they do advocate for children here in my county who've had IEP's and the schools were being non complient and they had to straighten them out. Maybe they could help. Civil Rights may be able to help as well. I am not positive about either of these, but it's some place any how and if they can't offer themselves for help and support, maybe they can offer some place who can. I'm obviously not an expert or anything, and I haven't " been there, done that " as of yet as far as advocating for with school, but I'll be there soon enough and if I didn't know what to do (now that I have the group to talk to I do:-) I would start with those places. Maybe your local MRDD board could be of assistance in helping you to get in kindergarten in the school of your choice-not to go to the MRDD school. All just thoughts, and I hope they helped some anyways. Take care and God Bless, and let us know how it goes. Joy --- garyloric <garyloric@...> wrote: > > > Hi all, > It's been quite a while since I have written to the > group (but I read every > post every day!) My name is Lori and I am mom to > 5yr (DS). For the > last 3 years has been attending pre-school > (by the way, I teach at > this school) for 3 hours every day. Her schedule is > kinda unusual, for 2 1/2 > days she is in a self contained special ed classroom > and the other 2 1/2 > days in a reg.ed pre-k classroom. She also has > speech 3 times a week, PT > and OT once a week each.(we had to fight very hard > for OT & PT services > because at first they refused to giver her services > they said she didn't > need them because " she does just fine for a DS kid " > we argued that we wanted > her to do " just fine " for a KID! (We won that > battle) She is doing > remarkablely well in the reg. ed class, she can > follow the class schedule > and stays on task at least 90% of the time (which is > better then some of the > kids in my class!) She knows all her colors, she can > count to 17 and she can > recognize several letters. Next year she will start > kindergarten and we > mentioned at her last ARD that we would like her to > be in reg. kindergarten > next year with an aide. Today her special ed > teacher said that our school > district's special ed director has said that > will NOT go to a reg. > kindergarten but will be placed in a self contained > unit. I asked why > this person would say that and was told that there > has never been a child > with DS go to reg. kinder and there never will > be!!!! I am so angry this > lady doesn't know my daughter, or the things she can > do she just sees a > label and that's it. Her next ARD for kinder > placement will be at the end > of the school year. (May) I know that several you > have/had your children in > total inclusive settings, I need some suggestions on > what we can do. I'm > sure the battle is just beginning! > Lori > Mom to -17, -17, Brent-16, Garrett-7 > and -5 (DS) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 You need to read your procedural safeguards section of your state regs to prepare for what will happen if they refuse placement in a regular ed class. You need to read the regs for LRE and placement. They cannot refuse to place a child somewhere based on what they have done for other children. And they know that, I doubt if they will confess to statements like the one you were told. They will use the services on the IEP as an excuse for placement somewhere other than regular ed. That is what you must be prepared to battle. And your child must receive adequate support in the regular ed class (read failure when all means of support have not benefitted the child) before placement can be changed and another placement becomes LRE. Got to www.wrightslaw.com and start reading information and advice there. You do need to prepare. Document, document, document. If you have any conversations regarding your child's placement, IEP etc., follow with a letter. Dear Ms. , thank you for your phone call on Thursday, 1/17. I just wish to make sure I understood your comment about never allowing my daughter to be in a regular K class because no child with DS ever has before. Are you saying you will be denying her FAPE and a placement in the LRE that the law requires? Cheryl in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2002 Report Share Posted January 17, 2002 Lori, I feel for you because I worked for an early intervention agency where was getting services and ended up going to state mediation with them. It was pure hell to work in that environment (but we won on each count!!). Because I worked there, Tim was the parent panther and not me. I'm sure they hated him..lol! Anyway, stick to your guns and line up your advocates. No one is suppose to talk about placement until the goals and objectives have been written anyway. You can do the IEP up to that point, and if it looks like it's going to be rough, reconvene! Through out terms like FAPE and LRE. I am reading our state regs sometime this weekend....all 116 pages of them! Our IEP is scheduled for Wednesday. I was told today that we have a time limit of 1 1/2 hours and will have to reconvene..obviously, the school knows this will be not be a short one. We have lots of stuff to go over...and I am going to write my own agenda and fax to the school the day before! Hang in there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 It's been awhile, guess I'm due for a vent! This week has been holy hell, what with starting Zyprexa...he's worse! I even upped it, since the MHMR clinic where 's doc is, is closed on the weekends and I don't know how to get in touch with them....no answering service!!! I had no choice..he was climbing the furniture, throwing things, etc. I know another client of MHMR who's over 200 lbs. and is on twice the dose of 's, and it knocks his butt out! Why won't anything work with ??? I am at my wit's end, between this going on and fighting with the school over recent issues you all know about. I've written a very long letter to 's teacher rescinding the authorization I gave them about the chair and cancelled the ARD indefinitely until I get another autism eval and a functional behavioral assessment. That should set them off!! I told them no restraints and no time out's or barring him from recess. Hubby and I are initiating counseling to deal with this. We have differing opinions on discipline...he thinks will grow out of these behaviors as he gets older.....huh???? Why is he so stubborn? Everyone agrees with me that it only gets worse and I've spoken to other parents who've said this to me. Thanks for the read....I'm going to lay down.....'s up....oh brother...only lasted ten minute nap! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2002 Report Share Posted February 9, 2002 It's been awhile, guess I'm due for a vent! This week has been holy hell, what with starting Zyprexa...he's worse! I even upped it, since the MHMR clinic where 's doc is, is closed on the weekends and I don't know how to get in touch with them....no answering service!!! I had no choice..he was climbing the furniture, throwing things, etc. I know another client of MHMR who's over 200 lbs. and is on twice the dose of 's, and it knocks his butt out! Why won't anything work with ??? I am at my wit's end, between this going on and fighting with the school over recent issues you all know about. I've written a very long letter to 's teacher rescinding the authorization I gave them about the chair and cancelled the ARD indefinitely until I get another autism eval and a functional behavioral assessment. That should set them off!! I told them no restraints and no time out's or barring him from recess. Hubby and I are initiating counseling to deal with this. We have differing opinions on discipline...he thinks will grow out of these behaviors as he gets older.....huh???? Why is he so stubborn? Everyone agrees with me that it only gets worse and I've spoken to other parents who've said this to me. Thanks for the read....I'm going to lay down.....'s up....oh brother...only lasted ten minute nap! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 In a message dated 2/10/02 2:10:03 AM Pacific Standard Time, writes: > It's been awhile, guess I'm due for a vent! This week has been holy hell, > what with starting Zyprexa...he's worse! I even upped it, since the > MHMR clinic where 's doc is, is closed on the weekends and I don't know > > how to get in touch with them....no answering service!!! I had no > choice..he > was climbing the furniture, throwing things, etc. > > I know another client of MHMR who's over 200 lbs. and is on twice the dose > of > 's, and it knocks his butt out! Why won't anything work with ??? > I > am at my wit's end, between this going on and fighting with the school over > > recent issues you all know about. > > I've written a very long letter to 's teacher rescinding the > authorization I gave them about the chair and cancelled the ARD > indefinitely > until I get another autism eval and a functional behavioral assessment. > That > should set them off!! I told them no restraints and no time out's or > barring > him from recess. > > Hubby and I are initiating counseling to deal with this. We have differing > > opinions on discipline...he thinks will grow out of these behaviors as > > he gets older.....huh???? Why is he so stubborn? Everyone agrees with me > that it only gets worse and I've spoken to other parents who've said this > to > me. > > Thanks for the read....I'm going to lay down.....'s up....oh > brother...only lasted ten minute nap! > > > > , Sorry things are rough with . I worked with a 180 lb man that zyprexa worked wonderfully to decrease his aggression. For it brought on headbanging after the first dose. Short trial for that medication. Generally medications haven't worked for either. Adderall is working to take the edge of the impulsiveness off but you are right, without a good behavioral intervention behaviors won't improve. He finds them effective to use as communication and unless motivated to change will continue to use them. 's behaviors have improved. He is still hair raising at times but overall much better. It took lots of work, maturing, and a bit of a helpful med. Good luck with the counseling. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 In a message dated 2/10/02 2:10:03 AM Pacific Standard Time, writes: > It's been awhile, guess I'm due for a vent! This week has been holy hell, > what with starting Zyprexa...he's worse! I even upped it, since the > MHMR clinic where 's doc is, is closed on the weekends and I don't know > > how to get in touch with them....no answering service!!! I had no > choice..he > was climbing the furniture, throwing things, etc. > > I know another client of MHMR who's over 200 lbs. and is on twice the dose > of > 's, and it knocks his butt out! Why won't anything work with ??? > I > am at my wit's end, between this going on and fighting with the school over > > recent issues you all know about. > > I've written a very long letter to 's teacher rescinding the > authorization I gave them about the chair and cancelled the ARD > indefinitely > until I get another autism eval and a functional behavioral assessment. > That > should set them off!! I told them no restraints and no time out's or > barring > him from recess. > > Hubby and I are initiating counseling to deal with this. We have differing > > opinions on discipline...he thinks will grow out of these behaviors as > > he gets older.....huh???? Why is he so stubborn? Everyone agrees with me > that it only gets worse and I've spoken to other parents who've said this > to > me. > > Thanks for the read....I'm going to lay down.....'s up....oh > brother...only lasted ten minute nap! > > > > , Sorry things are rough with . I worked with a 180 lb man that zyprexa worked wonderfully to decrease his aggression. For it brought on headbanging after the first dose. Short trial for that medication. Generally medications haven't worked for either. Adderall is working to take the edge of the impulsiveness off but you are right, without a good behavioral intervention behaviors won't improve. He finds them effective to use as communication and unless motivated to change will continue to use them. 's behaviors have improved. He is still hair raising at times but overall much better. It took lots of work, maturing, and a bit of a helpful med. Good luck with the counseling. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2002 Report Share Posted February 10, 2002 In a message dated 2/9/2002 2:42:19 PM Eastern Standard Time, Ltb3105@... writes: > It's been awhile, guess I'm due for a vent! Hi , You certainly have your hands full. I hope they can find something for that will work for him. You are off to a start with the school for now. I am thinking of you and hope for a better week for you and . Charlyne Mom to Zeb 9 DS/OCD ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2002 Report Share Posted February 14, 2002 ooh hugs laura, hope you get some sleep soon, i know this may be late in reply, shawna. ===== shawna __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Angie - Sorry to hear you are having a rough time. Some professional moving companies will pack up most everything for you. Would it be possible to hire one? And no, I don't think you are expecting too much of your boyfriend, although I would suspect that he's a little stressed over the move as well. Hang in there - don't overdo it if you can help it. All this will be over soon! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Ellie, I'm so sorry to hear that Riley is having such a time of it. I can remember when I thought I would go crazy due to all of the bad days which seemed to out number the good days. It takes it out of you physcially and emotionally. I know this may be hard to realize, but things will get easier, it will just take some time. Just this morning I was feeling a little down. I decided to look at the picture of our children that are in this group and I thought to myself " they are such awesome kids " . They have to endure so much, yet they all are full of smiles. Needless to say, I decided if they can smile through the difficult times--so can I!!! 's legs have never trembled, however, she has been in so much pain to where she is unable to carry her on weight. Possibly it is a flair that Riley is going through right now. With , usually she will have a fever to go with extreme pain and at times like that I will give her tylenol w/ codeine and lots of rest-which dosen't appeal to her when she could be playing with her friends. Sorry that I can't offer much advice but know that you two are in my thoughts tonight and I hope that things will start looking up for you and Riley both! Best wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Ellie, A flair may mean different things to different people, but generally it is worse than normal day(s) with regards to pain and stiffness. there may be visual signs in that joint(s) may become swollen and inflamed more than normal. as far as how long it will last -- no one can say. Even at my age and long-term bout with JRA have bad days. I tend to get a real bad attitude during my " flair " days and others i know get sad, and still others get quite, and that along with the visual signs i mentioned above. If a flair last long enough you dr may change your medication, add to your medication, or increase it. anyway as you can tell there is not a real good answer to your question. I would suggest trying to find an activity that you and riley both like and try to have fun. people watching/stareing is another subject all together. all i can say is that after 40 years i still am not used to it, but since i know i can't change i try to let it go. unless i am having a flair day (rememebr bad attitude) then i will have a go at there face. this actually brings up a good point and that is that taking care of the social aspects of your childs health is very important. i know that most of you are worried as you should be, with the physical health, but be ever mindful that someday your child will grow up and have to live in a world that at sometimes can be down right cruel. as you are doing now Ellie, venting may be the best medicine for those frustrating days...aL > Hi Group, > I'm having a hard time today. It started with Riley's trembling legs. > In the mornings. They shake in her sleep as I try to wake her. When I carry > her to the potty I stand her up to help her get her pants down and her legs > tremble. It was a bit worse this morning and the stiffness lasted longer, > all day in fact. I don't really understand what a flair is. I feel like > life is a flair now. She has some better days, but ultimately the bad days > follow. So I took her with me to drop Skyler off at camp and felt myself > feeling defensive when people would watch her walk. Back to the old high > school " what are you looking at " feelings. Is a flair just the worse days? > Or is it after many days of it seeming better, or is it after a time of > remission? I just don't completely understand this disease yet. I certainly > don't understand why it exists. Then a little girl gets raped and murdered > in my state and I thank God that it's only arthritis. And I feel selfish for > feeling sorry for myself or my child. What that little angels family must be > going through. What she must have gone through. I am so sad and angry on so > many levels lately. I'm sorry everyone, I'm just having a hard time right > now. I guess a week just wouldn't be complete without me crying and venting > to you all. Thank you for being there. > xoxo, > Ellie and Riley 4 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 My dear Ellie~ Oh what is a flare really? According to and I it is a time when we have no tools to deal with the moment at hand....she is 15 Or as my son puts it .....the doctors has not come up with a title for the situation....he is 12 Icy Hot and Thera Cure (SP?) have come up with a pad that has no odor and it is sized to the user. can go to bed stiff and feel some better in the a.m. Or maybe she is hurting during the day and she is able to use this product for 8 hours, it is fitted to the wrist lower back, upper neck area without odor. It is worn like an ace bandage and odorless. It works on the body heat. According to flares are days that you really don't want. She has AS.( among other things..) on the other hand wants people to know that she is really cool...sensitive...perceptive....realistic. " uncle rusty " dear friend...he () says not like a temporary fix...feed the hungry for a day....teach them to fish and you feed them for life....he wants to teach EVERYONE to fish.... so wants to make a breakfast it is unreal....he knows that KNOWS how to fish...I don't know how but he does..... back to the point....none of us have a reason to really know why this exists. My son wants to tell everyone who will listen that it does...not the why...although I am in that group..... wants to tell me about kids that want to push her around at school in a wheel chair....and they had no idea that she could get that bad...you see the end of last year was the usual exams.....however she is in the honors program...then a friend of hers since 1st grades Dad committed suicide and that put her in a rigid flare...so bad....really bad....but the KIDS were there for HER not THEMSELVES.....it was such a growth point for us...we are not from this area.....small town....local families with lots of $$$$$ and lots of politics....we crossed ALL boundaries... wants to tell them that so many times you have an option to be beyond yourself....how cool it is to have an option to cross it... Make no mistake...this kid HATES her brother like all the rest of them.....right.....anyway...do I understand your anguish...do I give you hope.....I hope so....as it is all in the eyes of the beholder....so much love to you.... Have a sunny day! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Ellie, I consider a flare to be anytime Tas' symptoms start acting up. She is flaring right now, legs hurting, rashing, fevers, all round not well. We all need to vent once in a while. And we are very lucky. Teddy bear hugs and love, Casaria and Tas __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Ellie, You shouldn't feel bad about getting angry about Rileys' arhtritis. When Chey is in pain or has her labs done, ect. & even when I see people who don't take care of their kids like any parent should, like not keeping them clean or spending money on dope, & their kids don't even have food to eat it makes me angry too. I too try to keep in mind what you said about things could be worse, like Chey could've had cancer...or worse. I know sometimes it's hard not to look at other parents that have no idea what so ever how lucky they are, & get angry, especially if they look funny at Chey because of the way she walks, , or when someone looks at my oldest like she's a freak, believe me I've done " battle " with a few people about their kids taunting Theresia at times when she was younger(they were neighbor kids). I just wanted you to know you're not alone feeling this way, it's only human. Take care, & Cheyanne4(Poly) > Hi Group, > I'm having a hard time today. It started with Riley's trembling legs. > In the mornings. They shake in her sleep as I try to wake her. When I carry > her to the potty I stand her up to help her get her pants down and her legs > tremble. It was a bit worse this morning and the stiffness lasted longer, > all day in fact. I don't really understand what a flair is. I feel like > life is a flair now. She has some better days, but ultimately the bad days > follow. So I took her with me to drop Skyler off at camp and felt myself > feeling defensive when people would watch her walk. Back to the old high > school " what are you looking at " feelings. Is a flair just the worse days? > Or is it after many days of it seeming better, or is it after a time of > remission? I just don't completely understand this disease yet. I certainly > don't understand why it exists. Then a little girl gets raped and murdered > in my state and I thank God that it's only arthritis. And I feel selfish for > feeling sorry for myself or my child. What that little angels family must be > going through. What she must have gone through. I am so sad and angry on so > many levels lately. I'm sorry everyone, I'm just having a hard time right > now. I guess a week just wouldn't be complete without me crying and venting > to you all. Thank you for being there. > xoxo, > Ellie and Riley 4 poly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2002 Report Share Posted July 22, 2002 Hi Ellie, e here. Just checking in. Joe is out of town for two weeks so I haven't been popping in as much lately. But your post got to me. I feel so bad for little Riley (and all the others affected by this ugly disease). I would call your rheumy and let him/her know how bad she is in the morning. There are other medicines or perhaps she needs more of something. (I can't even begin to remember what she is taking). in my opinion this ugly disease is somehat in control when the child/person is able to enjoy parts of life (even if there is still swelling/some pain etc) I hate emai9l sometimes, can't explain as well as I want to.... Anyways, for some I don't know if taking all of it away will happen but the ability to enjoy life has to be there no matter what. Does that make sense. Call the rheumy, and insist on more/different to make her more comfortable. There are quite a few options out there. Our rheumy has been great on adding until comfortable, we can always taper later. Best wishes to you and your little one. Oh, and vent whenever. It needs to come out or it is too easy to keep it all in and then it can be bad for your health. e, mom to joe with poly --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Dear Ellie, you are never selfish venting and being angry about JRA. I have had a lifetime of this disease, however, I had it. I don't know for the life of me how you wonderful parents cope at all. As a mom myself You all must be made of something special. My heart breaks for you and everyone's children on this site. It is one thing to have this disease as a mom, but it is different to be the mom of a child with JRA..You are right to ask if a flare can last a lifetime, I have felt that myself. I never have had remission. All I can offer is encouragement to stay strong and keep looking ahead for the better days. Hugs to all, Carolyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Ellie- I'm so sorry to hear Riley is having such a tough time. I've never heard of trembling legs. But I'd call her doctor and tell him what's going on. I've been out of touch for a couple of weeks, so I'm not sure what's been happening (I had to delete the posts that came in while I was gone to catch up), but last I heard, I thought she was doing a little better. If she's stiff all day, her rheumy might want to increase her meds right away or add something else. 's had this for a couple of years and I still don't totally understand what a flare is. As I understand it, some people have good and bad days and the bad days are flares. For , I'd say she's just had two major flares that lasted months at a time. You have every right to be upset. It's terribly painful to watch a child who's hurting and can't do what other kids can. As for what other people think, don't worry about it. I used to get paranoid about people looking at some times. But you'd probably find they're just curious, and would probably be very sympathic if you told them what was wrong. I know everybody keeps saying, hang in there, it will get better. I know it seems like it's taking an awfully long time, but she will get better. Talk to your doctor about your concerns. Does she have another appt scheduled soon? When was doing poorly, her doctor was seeing her every couple of weeks. I wouldn't be too patient (it's not in my nature). Hugs to you both. You're in my prayers. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Ellie and all, just quickly visiting here. The camp at work with jra teen-agers still going on... so far so good, everybody is excited and active and we only had to inject one ankle... last year we had to do 48 joints altogether during the camp! Biking trip and climbing is over, and we do have some young gentlemen in the group! And of course some romance in the air as well (with 5 boys and 5 girls...). I'm positive that the parents will be terrified when they see the video of the week... But, Ellie, I just wanted to say to you: please don't feel that you shouldn't be angry b/c of jra or compare your experience as a mom with somebody who lost her child. I told this to one of our youngsters who feels that he shouldn't complain about jra since his sister has cancer. There are no " grades " available, no disease is " better " that another one. Everyone deserves to be unhappy about being sick and receive support if and when needed. Love, Soili Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Ellie and all, just quickly visiting here. The camp at work with jra teen-agers still going on... so far so good, everybody is excited and active and we only had to inject one ankle... last year we had to do 48 joints altogether during the camp! Biking trip and climbing is over, and we do have some young gentlemen in the group! And of course some romance in the air as well (with 5 boys and 5 girls...). I'm positive that the parents will be terrified when they see the video of the week... But, Ellie, I just wanted to say to you: please don't feel that you shouldn't be angry b/c of jra or compare your experience as a mom with somebody who lost her child. I told this to one of our youngsters who feels that he shouldn't complain about jra since his sister has cancer. There are no " grades " available, no disease is " better " that another one. Everyone deserves to be unhappy about being sick and receive support if and when needed. Love, Soili Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 hi Ellie vent away and get it out of your system the trembling legs not sure if your saying tremors as gets or not she dont just get the tremors in her legs but every where honey i wish we all lived closer so each other could pick up the phone and say hey i need you over at my house but we cant s legs tremor as though shes having muscle spasms sometimes so bad she says the bone feels like its going to break she takes a muscle relaxant for this its called connective tissue disease cant hit any muscle in the body its in with jra complications when your child starts this 1 you should ask if shes hurting 2 if so get her in a hot bath soak try to relax the muscles as best you can call the doctor and let them know whats going on shaking of the legs is scarey when first started i didnt know anything i first thought it was a seizure starting in my head i was thinking ok what could happen next let people look its their loss if they dont help you know your child and your child knows his or herself use to get so mad at me when i would have to put her in that wheelchair because i didnt need help if none was offered so when people looked i stared at them and in my low voice i would say take a picture it will last longer lolol one thing to remember is others dont live your life and no one tells you what to do your a adult its hard to just walk around and not say anything to people staring at your child but those who are interested will come up and ask you you have no reason not to vent here this disease is new to many thats why is like she is now so what i have a disease that i cant do anything about but its not stopping me the other day she said mom i cant believe it i dont feel any pain today she said none of my joints hurt today she had this big smile on her face i gave her a hug and in my head i heard myself god if somethings about to happen make it a easy one please this disease is so harsh a flair is when the child is hurting whether theres swelling or not i believe the next morning she woke me up asking what she could do that both ears were hurting bad well i started her on antibotics right then never knowing what could hit next vent all you want Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Ellie, no you are not selfish - you are a Mom concerned about her child. Soili put it very well, I think - there are no " grades " . Like you I feel very angry about that poor child who was killed and sad and angry when any child has to suffer - and other times when I look at Robbie, and feel bad for feeling so good about how he is doing when so many others aren't responding as well to the meds, and when others are dealing with so much worse. Then I tell myself that it is ok to feel good when Robbie feels good, and it is okay to feel bad when he feels bad - regardless of the level of discomfort - the important thing for is to provide the love and support and guidance that Robbie needs, to prepare him for life and for his future - and to do it an a way that allows him to grow as a caring compassionate person. You are doing that for Riley. As for the looks from others, you will find a way to cope with that, and to teach Riley to. Hang in there Mom - lots of hugs and sunny thoughts coming your way. I also agree with whoever it was that posted that you should call the Rheumy and keep him posted on the changes Riley is experiencing. Val Rob's Mom (4,systemic) In a message dated Tue, 23 Jul 2002 8:17:13 AM Eastern Standard Time, soilimar@... writes: > > > Hi Ellie and all, > just quickly visiting here. The camp at work with jra teen-agers > still going on... so far so good, everybody is excited and active and > we only had to inject one ankle... last year we had to do 48 joints > altogether during the camp! Biking trip and climbing is over, and we > do have some young gentlemen in the group! And of course some romance > in the air as well (with 5 boys and 5 girls...). I'm positive that > the parents will be terrified when they see the video of the week... > But, Ellie, I just wanted to say to you: please don't feel that you > shouldn't be angry b/c of jra or compare your experience as a mom > with somebody who lost her child. I told this to one of our > youngsters who feels that he shouldn't complain about jra since his > sister has cancer. There are no " grades " available, no disease > is " better " that another one. Everyone deserves to be unhappy about > being sick and receive support if and when needed. > Love, Soili > > > > To unsubscribe, please send a message to: > -unsubscribe > > To change your email delivery options, please visit: > / > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2002 Report Share Posted July 23, 2002 Hi Ellie, Vent all you want sweetie.That MTX will kick in soon and you will see results yourself.I dont meen to put a damper on things,but Riley looked good to the rheumy at your last visit and they told you she looked better and that the MTX was starting to work.When you start to see results yourself you know its working.It really stinks that the meds take so long ,then you slowely increase to find the right dose.Call your rheumy and see if he can do something differant.Lord knows I have called s rheumy crying more than once.A flair is anytime the arthritis gets worse.So if Riley is worse than usual its a flair,I dont think it matters if the MTX is working or not.Pay no attention to the stares.I am just now comfortable telling people has JRA.His are usually comments on his fat cheeks.One lady at the grocery store would always smile and say I have stickers for my favorite fat boy.I had enough one day and kindly explained it was prednisilone for over a year.I try to be nice as long as the person making the comment isnt being outwardly rude.It was just 3 weeks ago and we were at the YMCA swimming and someone came up to me and asked how he can run around on a sprained ankle and shouldnt he be resting it.I briefly explained that its not sprained he has JRA and it has to get alot bigger before it bothers him,hes used to it,and that he needs to run around on it so it doesnt lock up.I dont remember s legs trembeling in the beginning,that would be heartbreaking and scarey.His problem was he couldnt stand or walk until around 9-10:00.It always took an hour after his pred before he could move.When he started being able to get up in the morning ,even if it was slow at first,is when we new the MTX was starting to work.Funny that after really started to show improvement,my husband asked the rheumy if the MTX was working(i thought it was a very stupid question)she told him she really didnt know if it was or wasnt,but with the big improvement in morning stiffness it probably was.s rheumys always want to know about morning stifness,the worse it is and the longer it lasts is a key indicator of disease activity.I hope Riley feals better today. Becki and 3systemic vent >Hi Group, > I'm having a hard time today. It started with Riley's trembling legs. > In the mornings. They shake in her sleep as I try to wake her. When I carry >her to the potty I stand her up to help her get her pants down and her legs >tremble. It was a bit worse this morning and the stiffness lasted longer, >all day in fact. I don't really understand what a flair is. I feel like >life is a flair now. She has some better days, but ultimately the bad days >follow. So I took her with me to drop Skyler off at camp and felt myself >feeling defensive when people would watch her walk. Back to the old high >school " what are you looking at " feelings. Is a flair just the worse days? >Or is it after many days of it seeming better, or is it after a time of >remission? I just don't completely understand this disease yet. I certainly >don't understand why it exists. Then a little girl gets raped and murdered >in my state and I thank God that it's only arthritis. And I feel selfish for >feeling sorry for myself or my child. What that little angels family must be >going through. What she must have gone through. I am so sad and angry on so >many levels lately. I'm sorry everyone, I'm just having a hard time right >now. I guess a week just wouldn't be complete without me crying and venting >to you all. Thank you for being there. >xoxo, >Ellie and Riley 4 poly > > > Quote Link to comment Share on other sites More sharing options...
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