Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Wanda, Don't think I welcomed you yet. I did want to tell you I know how you feel about wearing shoes others don't approve of. I've had a doctor's note for several years. I wear either SAS freetime (which look like tennis shoes) or birkenstocks. In the winter I wear my birke sandals with socks. I don't care how silly it looks. It makes a difference in the pain in my feet. Some days I can't wait to get to my car so that I can take my shoes off. I have problems with the tops of the my feet burning. I have orthotics for my SAS shoes but the birkes are more comfortable. No, I'm not the most fashionable person in the office, but I got over it, so other people have to too. I wear them with my dresses and pants outfits. I work for the military so I change bosses very often. I have a new one coming in May and I'm stressing about that (but that's another post). Every time I get a new boss we have to go through my shoe issue. All though I am civil service and they technically can't enforce a dress code on us, so even if I didn't have a note there isn't much they could do about it. What grade do you teach? Sorry if you said, I missed it. I have a 6 year old and have the utmost respect for teachers. Don't know how you do, but thank you. Again welcome. Tery - FL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 oh yeah i forgot. also has to have a drs. note for school to wear sneakers and not dress shoes. That was a hard thing to get past. He tried dress shoes and his left foot would ache so bad. That foot is also a club foot and he had to get a new AFO brace for that foot which will not fit into a dress shoe. The school decided that they would allow kids to wear black tennis shoes and they even went out and bought jesse a pair themselves. Every year though i will have to get a new letter saying that he can't wear dress shoes so that it doesn't cause trouble. Some parents don't care if he has special needs its still not fair to their children. In a way i guess they are right but if they were in our shoes it sure wouldn't feel good. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Wanda, has attended schools in vermont and in florida before we came here to alabama. Vermont schools were so understanding, sometimes over protective of jesse and i can't say thats a bad thing but it also gave jesse great power over the school which wasn't good. Florida schools were also great. I really didn't have to worry about jesses absences or anything for that matter. They were always wonderful even when we were not in the best district. They were also understanding when the other kids had to miss school to do jesses drs appts. cause we had to travel 3 hours to the childrens hospital and it would be a whole day there. we would get there at 9am and not leave until 7pm cause he would see all the drs in one day and when we got home everyone was so tired that they didn't always make it to school the next day. This school here has put us through hell. The only reason they are being as good as they are is cause i got a lawyer and am suing the school board for jesse's rights.It has taken almost 2yrs to get where we are and he had to stay in stay back in 5th grade this year he should be in 6th. he is very smart. he has an above average iq but isn't on grade level only cause of his absences at school. it amazes me. i agree with you though about parents but i live in a very prejudice area. either we are not the right color to get special services or i don't have a drinking problem or a drug problem. Because we are a middle class family and we are white my kids should be attending school on a regular basis even though 3 of the boys have cronic problems. none of them are mentally handicapped or dying so to speak then they should be in school. comes down to if my kids or any other kids aren't in school the school loses money so they don't care if kids are sick they still want them in school. i refuse to send jesse to school cause so many kids go to school sick and he catches what that have and right now jesse is on an antibotic for 3 months to get his lungs clear up so we can get him on the growth hormones that he has been waiting for, for about 3 yrs. ok iam done. boy i feel better. but wanda i sure do understand how you feel even though our situations are different but they are kinda the same. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 Wanda, I think you have so much to give a child. Can you come and teach jesse? lol I sure hope you can find away to teach. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2001 Report Share Posted March 4, 2001 wanda: I too, can relate to all this group. I don't post much but faithfully read each post. The support and understanding is unbelieveable. We are truly blessed. Hope you have a good day. I found a scripture at a retreat this weekend that really encourages me when I just felt I couldn't handle anymore. Isa. 40:29. Hope it will help you too. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 And I'm sitting here with tears in my eyes because you've been alone for so long with nobody to understand and support you, Wanda. We really do understand. There are many ignorant, judgmental people out there, but we are here to tell you that we've dealt with them and we know it's hard, but don't let them cause you to doubt yourself. They are the ones with the problem (it's hard for me to be non-judgmental when it comes to judgmental people!). You know the truth of how you are feeling and what your limitations are, and you need not explain or justify anything to anyone. You only have so much energy. I come from a family of teachers and I know that teaching is not an easy job, physically or intellectually. It's amazing you have the energy to do it and put up with the idiotic principal and unruly children all day. Maybe after you retire you will be able to do more around the house if you want to, but listen to others who have said that it really isn't important. I'm compulsively neat by nature. My house used to look like nobody lived here it was so clean and orderly. I've been going through a divorce for going on two years - the house was literally and figuratively torn apart as we separated things and my husband moved out. Between that and how I had been feeling, the house looks " lived in, " to say the least! LOL! I'm trying to make order out of chaos because I've been feeling better lately, but if I have a choice between writing you and everyone here or organizing a bookshelf or scrubbing the toilet, which do you think I will do? (OK, nobody give me grief about that comparison!!!) You aren't lazy and there isn't anything wrong with your mind. I'm glad you found us. ----- Original Message ----- From: " Wanda " <wandaroberts@...> < > Sent: Sunday, March 04, 2001 5:59 PM Subject: [ ] Tears of Thanks > I am sitting here with tears in my eyes because it seems that you guys understand what I have been going through for all these years. I don't feel I am a lazy person because I can't get things done or there is something mentally wrong because I can't get things done. Now, all I want to do is stay home with my dogs because they don't judge me. I am not having a fit of self-pity now, and am just thankful to have found this group. > > Wanda > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , those parents are not right. They should have compassion for a child with special needs. I must say that parents have changed through the years. I don't know why. Wanda ----- Original Message ----- From: 12341234@... Sent: Sunday, March 04, 2001 7:13 PM Subject: Re: [ ] Tears of Thanks oh yeah i forgot. also has to have a drs. note for school to wear sneakers and not dress shoes. That was a hard thing to get past. He tried dress shoes and his left foot would ache so bad. That foot is also a club foot and he had to get a new AFO brace for that foot which will not fit into a dress shoe. The school decided that they would allow kids to wear black tennis shoes and they even went out and bought jesse a pair themselves. Every year though i will have to get a new letter saying that he can't wear dress shoes so that it doesn't cause trouble. Some parents don't care if he has special needs its still not fair to their children. In a way i guess they are right but if they were in our shoes it sure wouldn't feel good. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , I taught the sister of a child in a wheel chair. She had cerebral palsy, but she had nearly normal intelligence. I can't tell you how that poor woman fought to have that child in a regular classroom. The child needed an aid all day and a communication board. I can tell you that one of the problems was the teachers. They did not want to have the child in their classes, but the mother was not aware of this. Teachers would complain that they did not have time to teach this child. What made this so bad was that Mrs. , the mother, was dying of cancer. This was her last child and she was trying to get services for her before she died. She knew that her husband would have his hands full with the other three children. (one in college, and two others in high school as well as the one with cerebral palsy). Sadly, she died about three years ago. I had a blind child in my classroom two years ago. J.R. was amazing. His parents did not want him in a school for blind children, and rightly so. He used a Braille machine to do his assignments in class, then put them in a machine which would print in English for me to read. I had all of the textbooks in Braille for him. There was a man that came in each week and I would give him the next weeks work to Braille for me. I had to make sure that I planned far enough ahead so J.R. would have all of his work. That was the only thing special that I had to do for him. He could read so well. When we read plays in class he had no trouble keeping up with his part. He was a great kid! Wanda Wanda ----- Original Message ----- From: 12341234@... Sent: Sunday, March 04, 2001 7:55 PM Subject: Re: [ ] Tears of Thanks Wanda, has attended schools in vermont and in florida before we came here to alabama. Vermont schools were so understanding, sometimes over protective of jesse and i can't say thats a bad thing but it also gave jesse great power over the school which wasn't good. Florida schools were also great. I really didn't have to worry about jesses absences or anything for that matter. They were always wonderful even when we were not in the best district. They were also understanding when the other kids had to miss school to do jesses drs appts. cause we had to travel 3 hours to the childrens hospital and it would be a whole day there. we would get there at 9am and not leave until 7pm cause he would see all the drs in one day and when we got home everyone was so tired that they didn't always make it to school the next day. This school here has put us through hell. The only reason they are being as good as they are is cause i got a lawyer and am suing the school board for jesse's rights.It has taken almost 2yrs to get where we are and he had to stay in stay back in 5th grade this year he should be in 6th. he is very smart. he has an above average iq but isn't on grade level only cause of his absences at school. it amazes me. i agree with you though about parents but i live in a very prejudice area. either we are not the right color to get special services or i don't have a drinking problem or a drug problem. Because we are a middle class family and we are white my kids should be attending school on a regular basis even though 3 of the boys have cronic problems. none of them are mentally handicapped or dying so to speak then they should be in school. comes down to if my kids or any other kids aren't in school the school loses money so they don't care if kids are sick they still want them in school. i refuse to send jesse to school cause so many kids go to school sick and he catches what that have and right now jesse is on an antibotic for 3 months to get his lungs clear up so we can get him on the growth hormones that he has been waiting for, for about 3 yrs. ok iam done. boy i feel better. but wanda i sure do understand how you feel even though our situations are different but they are kinda the same. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , I really wish that I could help you with ! Wanda ----- Original Message ----- From: 12341234@... Sent: Sunday, March 04, 2001 8:39 PM Subject: Re: [ ] Tears of Thanks Wanda, I think you have so much to give a child. Can you come and teach jesse? lol I sure hope you can find away to teach. shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , most of the problem that i had with the school here is because they know nothing about Systemic JRA. They really didn't want to have to deal with it cause it takes so much time and work to figure out a special needs child like . They don't understand that there are complications to the disease and meds. One thing for sure that they don't understand is his emotional state. Its not normal for a child to be depressed or talk about his death and so on except for kids that are emotionally distrub(which jesse is not) or from a disfunctional home. My ex husband and i may be divorced but we are best friends and talk at least 3 times a week. My ex and my boyfriend make a point of getting along (luckly they like each other) for the kids. It all comes down to one thing. being in the means more work for certain people and the kids in the school have to be aware of his condition. Its a same that money and not wanting to work to give a child an education is what they considered " Not Identifing a Childs Disability " . shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , I am sorry that you are going through bad times with the school. It's not fair. I have never moved around at all. My oldest son, now 19, had several severe flares of Systemic onset JRA between the ages of 3 and 6. For the later flares he was in kindergarten. His teach, a personal friend, did want to coddle him but we told him not to. We had a team meeting with the principal, teacher, school nurse, social worker from the JRA clinic to go over plans and what it would be like. They stuck to it. He also was later in Special Ed for a learning disability and it was handled the same way-evaluation (we had outside evaluation also which the school system paid for), meeting and Individual Education Plan which was reviewed each year and the team met. My daughter, 11, is also in Special Ed for ADHAD and learning disability and it handled the same way. Each state is different and MA just happens to be good. My husband and I watched the new show on Saturday night about the social worker. It is suppose to be based in CA, it was about the school forcing the family to keep their son on ritlin. Well my daughter is on Ritalin with no major problems, she just concentrates better. I kept saying to Steve -that's wrong, they can't do that. If a school is unable to meet the educational needs of a student they must pay for a placement that will. Also they just put him on drugs with no evaluation. My daughter's school suggested it but then we went to a physician and a psychiatrist which they would have had to pay for if our insurance hadn't. As far as you question about needles, I bet you could ask you doctor for a smaller gauge needle. I always bruised too. Temple Kuddle Kritters Farm 3 Fox Haven Way Chelmsford, MA 01824 dat2352@... http://www.homestead.com/kuddlekrittersfarm/index.html http://www.homestead.com/kuddlekraft/index.html http://www.homestead.com/kuddlekrittersdairygoats/index.html ----- Original Message ----- From: <12341234@...> < > Sent: Sunday, March 04, 2001 8:55 PM Subject: Re: [ ] Tears of Thanks > Wanda, > > has attended schools in vermont and in florida before we came here to > alabama. Vermont schools were so understanding, sometimes over protective of > jesse and i can't say thats a bad thing but it also gave jesse great power > over the school which wasn't good. Florida schools were also great. I really > didn't have to worry about jesses absences or anything for that matter. They > were always wonderful even when we were not in the best district. They were > also understanding when the other kids had to miss school to do jesses drs > appts. cause we had to travel 3 hours to the childrens hospital and it would > be a whole day there. we would get there at 9am and not leave until 7pm cause > he would see all the drs in one day and when we got home everyone was so > tired that they didn't always make it to school the next day. > > This school here has put us through hell. The only reason they are being as > good as they are is cause i got a lawyer and am suing the school board for > jesse's rights.It has taken almost 2yrs to get where we are and he had to > stay in stay back in 5th grade this year he should be in 6th. he is very > smart. he has an above average iq but isn't on grade level only cause of his > absences at school. it amazes me. > > i agree with you though about parents but i live in a very prejudice area. > either we are not the right color to get special services or i don't have a > drinking problem or a drug problem. Because we are a middle class family and > we are white my kids should be attending school on a regular basis even > though 3 of the boys have cronic problems. none of them are mentally > handicapped or dying so to speak then they should be in school. comes down to > if my kids or any other kids aren't in school the school loses money so they > don't care if kids are sick they still want them in school. i refuse to send > jesse to school cause so many kids go to school sick and he catches what that > have and right now jesse is on an antibotic for 3 months to get his lungs > clear up so we can get him on the growth hormones that he has been waiting > for, for about 3 yrs. > > ok iam done. boy i feel better. but wanda i sure do understand how you feel > even though our situations are different but they are kinda the same. > > shelly > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Wanda, What a touching post. Thanks for writing it. My dogs are sometimes my best company - you are right, they never judge. We love to hear about pets so you can always talk about your dogs here if you just want to think about something that is loving and fun. I am so glad you found this group and that you have found the support that you needed. This is a wonderful group and they do understand. Unfortunately, many of us have been in your shoes. Pat At 05:59 PM 03/04/2001 -0600, you wrote: >I am sitting here with tears in my eyes because it seems that you guys >understand what I have been going through for all these years. I don't >feel I am a lazy person because I can't get things done or there is >something mentally wrong because I can't get things done. Now, all I want >to do is stay home with my dogs because they don't judge me. I am not >having a fit of self-pity now, and am just thankful to have found this group. > >Wanda > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 Jan, Thanks for sharing the beautiful passage with the group. We all hit the point that we think we can't handle anymore. One of the advantages to a group like this is that we learn what helps others and have more resources to draw from when we face that situation again. Pat At 10:39 PM 03/04/2001 -0500, you wrote: >wanda: I too, can relate to all this group. I don't post much but faithfully >read each post. The support and understanding is unbelieveable. We are truly >blessed. Hope you have a good day. I found a scripture at a retreat this >weekend that really encourages me when I just felt I couldn't handle anymore. >Isa. 40:29. Hope it will help you too. > >Jan > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , I really don't know if will ever out grow this. He has had it since he was 4yrs old and the lung part since he was 6yrs old. Its very possible that he had it before he was 4 too.He has some good months usually from april to oct. the rest of the year seem to be flares for him. Some days are good and some are bad. the dr just called and told me that his liver enzymes are up again so we decreased one of his meds again. iam sure he will flare now. This explains why he has been so moody and not feeling well. is having lots of trouble with his tummy. he either can poop or has diaherra an cramps in his tummy. Most like from all his meds. He goes to the peds. GI dr in april. He also is having trouble with his eyes and goes to the eyes specialist on the 29th. good news we can start his growth hormones on the 22 of this month. He will like that alot even though it is another injection. I think if your dr won't give you REAL pain meds that you need to find another dr. living in pain is bull. there is no reason for it. this is jesse's 3rd rheumy and this is the only one that wanted him on pain meds. can you imagine a child in constent pain and not given a damn med at all for almost 5 years. its was heart breaking. i sure wish you luck shelly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2001 Report Share Posted March 5, 2001 , I understand totally. Does he have any times without flares?and just think this is the only kind of JRA with a potential of growing out of it. Meds are better now than when Dan was bad 12 years ago. He was on trisalycilate which wrecked havoc on his stomach. Which was worse some days the- JRA pains or stomach pains! Dan had periods of months between flares so one of the main focuses during flares was preventing contractures-but he was very young! And now there is me. I went to the rheumetologist today, presented my case and then went for my next remicade infusion and he gave me Ultram (sp) for pain, didn't want to listen to my presentation on the positive uses of narcotics at all. So if this doesn't work guess I look for a new doctor. Temple Kuddle Kritters Farm 3 Fox Haven Way Chelmsford, MA 01824 dat2352@... http://www.homestead.com/kuddlekrittersfarm/index.html http://www.homestead.com/kuddlekraft/index.html http://www.homestead.com/kuddlekrittersdairygoats/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 , Just to shed a little light or hop[e, the Pediatric Rhemetologists that Dan saw said that it is not until 23 that he would be out of the woods. We were lucky, he had only several major flares but every time he got a temp or had an infection, I held my breath because those seemed to trigger the flares. Also my Grandmother died when he was three and it was shortly after that that he got sick. When I finally got up the nerve to ask the doctor what I thought was a silly question. He told me that 10 years earlier when he first started he would have laughed but not anymore. Emotions and stress play a big part. Who knows maybe my RA was triggered by all my surgeries and near death experiences. Have asthma too! You are right about the pain meds, I will try this for a week and if there is no improvement, I'll find a new doctor, after all I do live in the doctor capitol of the world or rather near - Boston! I was just really disappointed in my doctor, I really like him. Have you read " Arthritis in Children " ? Great book, I could send it to you. I gained most of my understanding of this disease and some other things from that book. Temple Kuddle Kritters Farm 3 Fox Haven Way Chelmsford, MA 01824 dat2352@... http://www.homestead.com/kuddlekrittersfarm/index.html http://www.homestead.com/kuddlekraft/index.html http://www.homestead.com/kuddlekrittersdairygoats/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Dear : I just read a post of yours and read you have asthma, as I do. I was just wondering if you have heard of Singulair 10mg? My Doctor just put me on it and it is wonderful. I feel like a person again, I can breathe. You might want to try it. I just take one pill a day and now I feel like I can jog. I couldn't go up 3 steps without gasping for air before. I have suffered for over 20 years with asthma and I feel like a new person. I feel like I have my life back. I hope you can try it, and I hope everyone who suffers from Asthma can. Sincerely, Colletti Anjillah@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 , Thanks but according to my pulmonary doctor when I asked about it. I am well beyond singular being effective. I use flovent and serovent inhalers-2 puffs-twice a day. Keeps things under control as long as there is no exertion. Temple Kuddle Kritters Farm 3 Fox Haven Way Chelmsford, MA 01824 dat2352@... http://www.homestead.com/kuddlekrittersfarm/index.html http://www.homestead.com/kuddlekraft/index.html http://www.homestead.com/kuddlekrittersdairygoats/index.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2001 Report Share Posted March 6, 2001 Dear : I was on Flovent but it didn't help. I've been on aerobid and serovent now. Proventil prn. However, since I took the pill(Singulair) yesterday I haven't used any of my inhalers and I feel great. I couldn't walk up 3 steps with out wheezing and gasping for my life. I don't understand why your Dr would say that to you. What could it hurt if he put you on it. It is sure nice not to use inhalers. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2001 Report Share Posted March 7, 2001 Wanda, I am so glad you found us too. No one understands like a fellow sufferer. I'm glad you will be retiring soon so you can stay home with your dogs! a ----- Original Message ----- From: Wanda Sent: Sunday, March 04, 2001 6:59 PM Subject: [ ] Tears of Thanks I am sitting here with tears in my eyes because it seems that you guys understand what I have been going through for all these years. I don't feel I am a lazy person because I can't get things done or there is something mentally wrong because I can't get things done. Now, all I want to do is stay home with my dogs because they don't judge me. I am not having a fit of self-pity now, and am just thankful to have found this group. Wanda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2001 Report Share Posted March 9, 2001 Dear Wanda: I am glad you found us too. This is a wonderful group and everyone knows how we can all have hard days. Hang in there. Better days could be right around the corner. Sincerely, Colletti PS: Please write me anytime you feel like talking. I would love to hear from you and get to know you. Anjillah@... Quote Link to comment Share on other sites More sharing options...
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