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i have a kid with crohn's disease, and a kid who is bp. the bp kid is now 19, soon to graduate from her therapeutic day high school. she has really benefited from a long term relationship with her therapist, and the therapy at school. she pretty much refuses to take any meds, tho, even though the clearly help her. especially with physical symptoms that she has, headaches, etc. but it has been a long, bumpy ride since she was a little kid who drove me crazy. she was always oppositional, and even as a baby, inconsolable and hard to get along with. i just couldn't do anything right as a mom. the kid with crohn's was dx'ed 4 years ago. that has been hard, too. she had many years of stomach aches, and joint pains that were mysteries. then one day she started having incredible diarrhea, and was dripping blood. i could not believe that you could take a kid to the er with something like that and be sent home and told to follow up at the next available appointment with the gastro- in 3 months! she had to see here regular doc weekly until then. we had to do a weekly blood count, and after 4 weeks of watching it drop, it finally got into abnormal territory, and she was admitted to the hospital. it took an irate call from her doc to get that, tho. since then it has been the usually battle to get a kid to take pills. i have lupus with fibromyalgia, myself. it is finally under decent control, but it caused quite a bit of depression, and difficulty functioning at all, let alone coping with all that. (i have 3 other kids, also.) it is really hard to cope with people when it is hard to just be yourself, and get out of bed every day. your skin is too thin, and your insides are too heavy. doctors can be bullies, and drive you crazy. they are sure not likely to understand what it is like to be you. i had to switch my kid's gastro cuz she just did not understand what it was like to have a sick kid. i ended up just wanting to strangle her with my bare hands. i let loose quite a stream of 4 letter words when she refused to sign a 504 plan for tutoring when she couldn't get to school. it had taken a huge effort to get a proper plan in place, and the kid had had a bad year, sleeping poorly due to gastric reflux, and missed a lot of school. i was told to take her to a shrink, when her gastro should have figured out what was wrong. she sure did not know what it was like to turn your kid over to a shrink. that can be a nightmare, too. but she figured that she had recommended it, and i had not done it. bad mom, end of discussion. am i rambling now? yeah, i guess. so, see, there are others here in a similar pair of shoes. take care of yourself. hope you can dig up some respite care, and take a break for yourself. it's hard tho, i know.
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