Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Hi Thanks for your kind words... More and more I am realising the value and the importance of fighting a disease like this first with your mind, and then turning it into actions.... I just didn't realise how hard it can be! You have to hang in I guess.... Anyway, the indocid seemed to work yesterday even if it was the first day, Megs was bending and walking and climbing in and out of the car like nothing was wrong!!! From my point of view, to those out there who are new at this, if your little one is having a good period, treat it as such, take advantage of all the positive energy that comes out of it and try to bear in mind that it may or may not last and just make the most of it.... Jeepers, you can learn to be gratefull for such small things with arthritis. Thanks and good luck to you and your family... Ady Ogilvie aogilvie@... > ady > > Dear Ady, I know how you feel. When n is doing well, we are on top > of the world, it is like we are manic. When n takes a turn for the > worst, it just invades our soul and we feel awful. I try not to let > n see our frustrations, and we try to always stay upbeat with her. I > find that if I can help others with the disease then I feel better. Last > night n had a sore throat, and I about had a nervous breakdown > thinking that a flare was coming. She has only been under control for two > months. Anyway, after not sleeping most of the night ( so I just prayed > and prayed), I discovered that she had a cold this morning. I have never > been so happy for my child to have a cold. The sore throat was the > beginning of a cold and not a flare. This disease can be an emotional > roller coaster. > I can't help you with the reflexology. We give n flax seed and fish > pills for the omega 3 fatty acids. We also watch n's rest very > closely, and she has an early bedtime every night. Just hang in there, > and if you have some friends or family to talk to, go and let it all out. > > _____ > > <1/4821/2/_/524922/_/960391888/> > <http://adimg./img/4821/2/_/524922/_/960391888/> > _____ > > For links to websites with JRA info visit: > <http://www.geocities.com/Heartland/Village/8414/Links.html> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Ady and emotional roller coaster good way to describe it moms have the hardest job during anything with the family but also when things are bad the mom has to put up a smiley face just to help the child cope with melissa who has JRA , Reflex dystrophy Etc... we live in a big city and we have public transportation fun to ride to me it is cause since we have only 1 car right now i do use this transportation scary at firtst but i am getting use to it with melissas help reason i brought up this is melissa has to walk to get to this and since she cant walk up hills we take another route the flat road behind our house during this time we talk she talks about whats on her mind and when she says mom my knees hurt i cant make it i put my arm around her and tell her darlin just alittle bit more and we will be there dont give up and then i say look if you give up we are stuck cause i cant carry you and thats when i see a smile from her even with the knee braces she still makes it we are going to try out new things this summer to see which she likes and helps her better i will let yall know what we do so yall can try it at 13 years old you want to get out and go and these kids sometimes are restricted to do so Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Robbin, I have been riding that emotional roller coaster a lot lately! lol Even though Kelsey has improved so much and things are much better, we are still struggling with this. Today she had therapy and her therapist said we probably need to add in occupational therapy since her wrists aren't getting any better. Her knees and ankles have improved a great deal, thank goodness. Kelsey's rheumatologist will be in her office tomorrow so hopefully I will get to talk to her about my concerns. Speaking of therapy, today the therapist told us that she will be leaving in July to go back to grad school :-( Since we will be going to another place for the occupational therapy she recommended we switch all her therapy over there. Kelsey doesn't warm up to new people very quickly so I'm worried about the change, especially since she is so comfortable with her current therapist. Hopefully the adjustment won't be too hard for her. I know how it is to have only 1 car... we have just 1 also! Fortunately on the days we have appointments my husband has a ride to work so I can use the car. We have city buses, but they don't run near where we live. I hope the new things will work for . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Hi Ady, Your message has a lot of wisdom in it. It's true, we do come to better appreciate the small things in life, when we witness our children coping through the hard days they have as a consequence of their JRA. I hope Meg continues feeling better. Glad the indocin seems to be working better for her. Aloha, Georgina Adrienne Ogilvie wrote: > > Hi > > Thanks for your kind words... More and more I am realising the value and > the importance of fighting a disease like this first with your mind, and > then turning it into actions.... I just didn't realise how hard it can be! > You have to hang in I guess.... Anyway, the indocid seemed to work > yesterday even if it was the first day, Megs was bending and walking and > climbing in and out of the car like nothing was wrong!!! From my point of > view, to those out there who are new at this, if your little one is having a > good period, treat it as such, take advantage of all the positive energy > that comes out of it and try to bear in mind that it may or may not last and > just make the most of it.... Jeepers, you can learn to be gratefull for > such small things with arthritis. > > Thanks and good luck to you and your family... > > Ady Ogilvie > aogilvie@... > > > ady > > > > Dear Ady, I know how you feel. When n is doing well, we are on top > > of the world, it is like we are manic. When n takes a turn for the > > worst, it just invades our soul and we feel awful. I try not to let > > n see our frustrations, and we try to always stay upbeat with her. I > > find that if I can help others with the disease then I feel better. Last > > night n had a sore throat, and I about had a nervous breakdown > > thinking that a flare was coming. She has only been under control for two > > months. Anyway, after not sleeping most of the night ( so I just prayed > > and prayed), I discovered that she had a cold this morning. I have never > > been so happy for my child to have a cold. The sore throat was the > > beginning of a cold and not a flare. This disease can be an emotional > > roller coaster. > > I can't help you with the reflexology. We give n flax seed and fish > > pills for the omega 3 fatty acids. We also watch n's rest very > > closely, and she has an early bedtime every night. Just hang in there, > > and if you have some friends or family to talk to, go and let it all out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Hi , The exact same thing has happened to me before. Josh would start to go a little bit downhill, complain of a sore throat and generalized achiness, feeling more tired ... and I'd start worrying, thinking it was all starting up again. What a huge relief, when it turns out to be just a regular cold! Even though the cold takes a little longer to clear up, than someone who doesn't have JRA. Is that how it is with n, too? Josh seems to have cold symptoms longer than my daughter or I do. And on a couple of occassions (and I'm not saying this so you start to worry again, just to share the information) a cold has, in fact, seemed to trigger more arthritis symptoms ... but NOT always Well, I guess it's time for some home-made chicken noodle soup ... Hope n feels better, soon! Aloha, Georgina > WILLIAM PRICE wrote: > > Dear Ady, I know how you feel. When n is doing well, we are on > top of the world, it is like we are manic. When n takes a turn > for the worst, it just invades our soul and we feel awful. I try not > to let n see our frustrations, and we try to always stay upbeat > with her. I find that if I can help others with the disease then I > feel better. Last night n had a sore throat, and I about had a > nervous breakdown thinking that a flare was coming. She has only been > under control for two months. Anyway, after not sleeping most of the > night ( so I just prayed and prayed), I discovered that she had a cold > this morning. I have never been so happy for my child to have a cold. > The sore throat was the beginning of a cold and not a flare. This > disease can be an emotional roller coaster. > I can't help you with the reflexology. We give n flax seed and > fish pills for the omega 3 fatty acids. We also watch n's rest > very closely, and she has an early bedtime every night. Just hang in > there, and if you have some friends or family to talk to, go and let > it all out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 melissas PT is cool and she has fun with her she also has a OT which is her old therapist the adjustment will take 1 or 2 visits then your child will be great my hubby tells me to take him to work but if you know atlanta 400 is bad and the highways are bad with traffic i just tell him if i take the car you have to take the bus lololol he has never rode the bus before lololol melissa wears the knee braces and wrist braces and has a thing that fits on the pen and pencil to help grip so she can do her work melissa use to be very active hyper active ADHD is called since this happened to her shes slowed alot but her mouth chatters lololol she could talk your ears off lololol kelsey will do great Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Ursula, I do like the idea of going to one place instead of three! Kelsey loves her pool therapy, and it seems to help her the most, too. Does Macey do well with the moist heating pads? I know it would help Kelsey but I know she won't sit still long enough for it to do any good! lol I learned of a new activity to help hands and fingers that Kelsey loves to do and it really helps too. Her therapist has a large tupperware container (small enough to fit in microwave) filled with DRY rice. She puts it in the microwave for about a minute or two, heating the rice, and then buries small toys in it and has Kelsey dig them out. The heat is helpful as well as digging through the rice works her hands and fingers. Kinda messy, but easy to clean up! I hope Macey is doing well... when does she go to her rheumatologist? This month or next? Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 macey has been in ot since sept 98. she started pT in the fall of 99. her ot was actually one of the first people to mention the JRA possibility. our ped agreed and the testing started. the ot does the pool therapy for her, they have a pta that does it also but she's on maternity leave. macey also has low trunk tone so she gets therapy for that in the pool. the pt just started putting moist heat on macey's knees this week and we bought an electric moist heat pad from Eckerd's to do at home. our ot and pt talk constantly so I think its important to go to the same center for both. they compliment each other very well in their therapy sessions. Ursula Holleman Macey and 's mom http://home.att.net/~maceyh Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.