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Messages By: profderien
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December 6, 2005, 10:30 pm PST
 Quote From: tkolmetz thank you so much for your imput.. and no the school does not want to do anymore until he is diagnosed .. poor mason is stuck in the middle of all this red tape.. and i do agree with you that mason world can not have any part out of wack or he is out of wack... mason too has a thing about wanting to take off his shoes and clothing.. they are very annoing to him.. so inorder to keep all clothing and shoes on at school we make it a treat everyday he is able to come home and strip all his clothing off and walk around withonly his underwear on.. this seems to be working so far. but some days i can tell how his day was if he takes everythings off or if he only takes off his shirt. he is so original and wounderful .. i try not to snuff out his spirt .. somedays it is very hard... no our peditrician tried to medicate him right off the bat.. so ..... not sure about his ped. will try to make appt. and see if i can get this resolved with him .. if not we will be looking for another ped. and therapist. it took along time getting dale , our youngest son , diagnosed.. i know i am not wrong with dale and i hope i am on the right path with mason . the school is very upset with me right now the counceler , teacher , resourse room teacher and pricipal seem like the only way is to medicate him and my response is offcourse... it is the easy way out ... drug him up , shut him up and put him in a corner. then they won't have to work so hard.. sorry i don't think so.... not my son... but one question i was told that aspberger child can not lie.. is that true.. ??? well thanks for letting me bend your ear.. thank you for all your help and suggestions... tammy hi tammy --
bend away, my ears need the practice! that is a cool question about lying in asperger kids.
my experience is limited -- you are the proper expert. i found my old notebooks from a class about teaching AS kids in a normal [i hate that word] classroom setting. there's nothing there about lying, per se... but there is a discussion of 3 things that might be considered lying to US but not to the child.
1) poor impulse control/general inappropriateness -- we may find statements pure fancy, made up -- but we're not able to always figure out the child's context. 2) literal thinking -- these kids have trouble with metaphors, idioms, and any information that is implied. 3) the ships-passing-in-the-night theory! asperger's children assume that everyone they talk to is thinking about what they are thinking -- and know the same details about something that they know! it's not really lying, it's more like a huge non-intentional frustration for everyone.
i would weigh in, then, to say that they probably are capable of lying but seem to me to be less likely to -- just given the limitations of their disorder. how is that for hedging my bets?
you sound tired. if i were to say "get some rest," would you roll on the floor, laughing your ass off???
take good care, prof-de-rien impulse controle, literal thinking that may be far from the norm |
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December 7, 2005, 10:16 am PST
Quote From: datenshi It's not that Tennessee has no residential in-patient mental health facilities, it's that there are no *government owned* facilities. In other words, unless you're obscenely rich or have some VERY good health insurance, you can't get into one. I've looked everywhere...called places...everything I could do to find something. There is nothing here. She thinks the world owes her a free ride, that society owes her something; that people should take care of her. This is simply not true, especially not at her age (She's only 44). She wants to have a car, a nice place to live...but she refuses to get a job and claims she isn't able. So she complains and whines about how horrible her life is when she doesn't have a car and lives in public housing, when in reality, she's lucky she got the public housing, which is next to impossible to get right now. She was lucky she didn't end up on the bad side of town...but the glass is always half empty.
I want to help her, but she needs professional help that I cannot give. I just don't get it...I mean, shouldn't there be *something* out there for the mentally ill? Heh, sometimes me and my aunt sort of joke darkly that even Dr. Phil couldn't help my mom. I'm just worried that she can't be helped. And...even though I don't live with her, and I have alot of bad memories with her, I can't let her go. I have nightmares about it, and it simply scares me to death.
Thanks for replying, at least. I guess my question scares people away...it's a little more dramatic than some, I suppose. it is a massive screw-up in this country that the mentally ill [and most drug addicts] must "hit bottom" before getting appropriate treatment. that is absolutely not the case. i did case management and taught a basic life skills class at a homeless shelter, in the years before my body collapsed! one of our criteria for admission was active or chronic illness -- the homeless men that might not be able to handle the cold, for example, or need transportation or an advocate to the hospital. virtually all of the men were co-morbid -- normally due to a mental illness or a host of other medical issues. some of the anxiety and depression were short-lived -- having just occured when they found themselves homeless. in their normal life, they were completely well in terms of mental health. the physical ailments, though, didn't go away.
"obscenely rich or very good health insurance" -- i DO HEAR YOU when you say you've looked and called everywhere. maybe it is time for someone else to take over that burden?
some suggestions, though you've probably checked them out. i found these though a google search directed me to: http://www.state.tn.us/mental/crisis.html
***how about writing and/or calling commissioner of the dept of mental health and developmental disabilities virginia trotter betts.
***TennCare Partners Advocacy and Information Line The TennCare Bureau contracts with the Mental Health Association of Middle Tennessee to operate this line to provide information on the Partners Program and provide external advocates to help consumers access services.
***DMHDD's Office of Consumer Affairs Operated by the Department of Mental Health and Developmental Disabilities to assist consumers in addressing issues and finding their way through the system. Will also help exercise their appeal rights if that course of action is needed
whenever possible, contact and deal with the people "at the top" -- they truly want to solve consumer complaints, for the most part. a letter to the CEO gets a better [and quicker] response!
with her diabetes, your mother should be categorized as comorbid. that should pull some weight somehow. always be sure to mention that.
take care of yourself. be a teenager, would 'ya?
prof-de-rien |
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December 9, 2005, 8:54 am PST
Quote From: baublitz I took methadone for a few years for severe crippling arthritis. I had the sweats and was irritated most of the time. My wife couldn't stand to be around me because I was so miserable. I was having a hard time understanding even simple conversation. I wanted to lash out at every one and everything, because of it. I went through hell getting off of that drug, but I did it cold turkey. I went back to my old drug. Vicoden, and I am much happier now. No methadone for me thanks; baublitz blitz@iqemail.com hi blitz,
i hope you are staying warm. the cold weather can be so hard on people with arthritis.
i have been harping on methadone, just because it worked for me. part of the reason why is that people tend to associate it with heroin and addicts -- and that angers me. open minds, you know? soooo:
we are all different; we see doctors who have different backgrounds, too. chronic pain is tough to handle and we (*i*) should respect our differing journeys.
it is solely out of concern that i ask:
**do you use the system of having a long-acting drug and a short-acting drug for breakthrough?
**purely our of concern, too, why did you have to wait two years when the methadone was obviously not right for you? i am so sorry that you suffered so long. i know how it feels to be bad off due to medication. there was one i took that kept me up all hours until i literaly ran into walls. and another one put me to sleep!
i hope you are having a good holiday season and that the pain will lessen in 2006 -- prof-de-rien |
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December 10, 2005, 10:52 pm PST
that's great, tammy. i have a big grin on. it sounds like you hit the jackpot with this doctor. it's weird how sometimes the help is right around the corner -- why must it always be when we are so bleeping tired! well, the one thing that is crystal clear: your son is an official enigma! you know, one day he is going to know all that you went through, and will go through, to help him on his way -- and he is going to appreciate you. keep the faith! prof-de-rien |
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December 12, 2005, 1:55 pm PST
Quote From: steph_ny Hi Prof-de-rien,
Hmmm...Some interesting questions...
First of all; "high" in my humble opinion, is impaired. It’s not just a matter of feeling good. It means euphoric, artificially happy. It’s been my experience that people in pain don't tend to get "high" unless their dosage is wrong or they are taking more than prescribed. Even then, if the pain is intense enough, they still won't get high.
I'd give about anything to have a couple of energetic and happy days, because that was the norm before RSD/CRPS. I guess that's kind of what I shoot for in treatment; to get back as close to my old "normal" as I can. Now that it’s been almost 4 years, I'm beginning to forget what "normal " was. I know it’s not a realistic goal, (at this point), but one can hope.
As far as my diagnosis, it was really strange. I went to the local ER because of a real nasty headache after my primary care doctor told me to go. They did a cat-scan and MRI of my head and found a bunch of rocks, just kidding. They found a brain aneurysm on my left carotid artery. I was referred to a neurologist in "nearby" Syracuse. After discussing the aneurysm, I told him that I was glad to have an explanation for some of my symptoms. He told me that the aneurysm wasn't responsible for my symptoms and after discussing them and examining me further he told me that I had RSD/CRPS.
That was 2 years after my accident...
As far as what I've read about the "inflammatory response" theory, it seems to have some promise. On the other hand, by definition the inflammatory response is caused by the sympathetic nervous system. (Chicken or the egg?) I would like to try the ketamine treatment. I've discussed pamidronate with my pain doctors and they feel it’s too experimental at this point. Another drug that "seems" to work is thalidomide, although it has some nasty side-effects. Pamidronate was used in Chicago to treat Paula Abdul and she seems to doing great. Remission or cure? I guess time will tell.
I can't believe a doctor actually changed the parameters of a med program that was working! If it was me, and the pain wasn't being controlled, I'd have a serious discussion with him about it. Its fine to try and get by with less than you need, but if your pain is not being controlled I'd have a serious discussion with "Doogie" about it.
It’s wonderful that you have a "soft place to fall". That in itself can make pain seem better. I have a very supportive fiancé and a three year old daughter who does her level best to keep me moving around <smile>.
RSD in the chest wall is awful. It’s similar to having a hot burning stitch in your side from running only it doesn't go away. At its worst I get cold and sweaty and can't get my breath. The doctors say that nothing was broken in the accident, but a rehab doctor believed that my cartilage was damaged (possibly torn) and that my diaphragm was damaged as well. Hard to tell - there doesn't seem to be any objective proof and I'm not willing to have them cut me open to find out.
RSD does spread. Perhaps not in all cases, but it does. It tends to move up and across the body, as it did in my case. It spread from my chest to my shoulder/neck area, then to my left arm and hand, then my right shoulder/arm/hand and recently it has been affecting my legs more. My mobility is still pretty good on a good day. Even on a bad day I can usually manage to do what I have to. I'm still working as well, although it is part time, and I'm very happy that my boss understands my situation and lets me flex my hours a lot.
In any case, the cold we've been going through up here in the northeast is really making life uncomfortable. Does temperature or weather affect your pain? I'm also having troubles with my vision. Does it seem to affect yours?
In January I'll be trying a couple of new (to me) nerve blocks to see if they offer any benefit. The first will be a cervical block (upper neck area) and then a lumbar (lower back) block. We'll see I guess.
I tried to follow your "map" as best I could. I wish you the best of luck with your treatment and I hope that 2006 finds you closer to an answer. May your bad days be short and good days be long... -Steve
steve --
i think we have talked before! over on yahoo? well, if so, hello again; if not, nice to meet you. defining "high" as "impaired" is perfect. only occasionally do i feel impaired from meds, and believe you me, the impairment is not fun. try taking a big dose of lasix twice a day! now, that's impairment! try my daily doses of prednisone and cortef! ah, well. you are absolutely right in that my pain meds don't get me happy nor high. they can, however, help me to move around some without too much agony. today and yesterday, i had to have help just sitting up to the side of the bed. that is more than painful -- it is embarrassing.
your diagnosis story is without doubt the strangest one i've ever heard. i was diagnosed by a neurologist also, but without the drama! okay, now help me. was the aneurysm repaired? if not, what is the plan? [if i am too nosy, just tell me]
i am interested in the inflammatory response theory because it would tie up some loose ends very nicely. that's all i got! all of the drugs you mentioned were brought up in appointments, and i either got the "too experimental" response or the "hmmm" response.
the doctor who jerked me off of methadone and then started in with blocks -- 21 months out of injury -- that didn't work... well, i believe in karma. he made beaucoup bucks because of his relationship with a well known rehab hospital across the street... and that relationship was dissolved earlier this month! i am sorry to be happy about someone else's misfortune. not too sorry. he has enough people hooked on his style to make his car payments.
yes, the soft place to fall is a must have, a life saver! since i started letting him in to meet all the doctors and to help me keep track of stuff -- our relationship has improved. we are both working on owning our stuff. i try not to use sick behavior to manipulate [we all do it, think about it!] and he tries not to do things for me unless i ask. of course we have other stuff -- but this ain't the place for that!
i totally understand your decision to not operate -- the proof is evident. with every orthopedic injury i have had, the rsd/crps has moved, and moved dramatically.well. and yes, the weather makes it all rotten.
the very best of luck with blocks... who they help, when they help, and even why they help is not predictable. i'll be thinking of you. are they bier [?] blocks?
take care, prof-de-rien |
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December 13, 2005, 12:41 pm PST
Quote From: helpless24 I'm still here waitng in pain and feel good some day's and yet incredibliy bad others still suffering and waiting on test results to come back if anyone can offer any input or advice I would welcome it right about now i have been following your posts but can't tell exactly what is going on. the first post said: I am in constant pain and hurt everyday , I may have recently had astroke or have cancer in my back or left shoulder so if anyone has advice please let me know i apologize so much if i missed something. i also read that whatever the tests were would come back on the 19th. i had a stroke about 15 years ago. lucky for me, i was in the hospital recovering from a surgery -- so i had instant help and physical therapy the very next day. unless you are speaking of a "little" stroke [a TIA -- a transient ischemic attack], you need to follow the advice someone else gave you and get thee to the emergency room. a stroke is nothing to **** around with! could you explain what is wrong with your back and shoulder? who or what has suggested cancer? do you have a family history? that can be a heavy load to bear, genetic bombshells, but they're in for a tough fight these days with all of the medical advances. am i correct in assuming that you've had some biopsies done and are waiting for any pathology to show up? what if they don't? these things sometimes go on with no answers for a while before getting a clear explanation. and sometimes the symptoms just disappear as quickly as they came. i am hopeful that your pains are fixed by a diagnosis and an easy cure! in any event, you need to have some help! you can advocate on your own behalf or ask a family member/close friend to help you. you might contact your doctors or nurses and tell them that you are in serious pain and ask them to help you -- don't be hesitent to tell them that the anxiety and the pain are becoming too much to handle. BUG them about when exactly your tests results will be in!! one more thing. i hate your name! helpless? ha! never! you go, girl! prof-de-rien |
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December 14, 2005, 2:50 pm PST
i have been in a power wheelchair for 4 years and that machine became a part of me. literally and figuratively, it kept me going! well, last sunday the invacare suddenly refused to work any longer. i contacted bcbs and got a lukewarm response -- i was welcome to go ahead and make the purchase, then i should send them "any letters of necessity" i could come up with, along with the bill -- then they will decide how much, if any, they will reimburse. the letters of medical necessity were the key, i was told...
let me tell you! since december 4, i have been hobbling around using canes and walkers. i finally believe the doctors who told me that i now have some sort of respiratory disease to add to my list of diseases. november 24 or 25, he had to call 911, and in the ER they did CPR [from which i now have 3 fractures of the sternum] and put me on a ventilator. i stayed on it for 6-7 days. during the rather long period where i was unaware of everything, they discovered that my lungs failed to recover as they should. serious looks were exchanged -- but what did i care? i was going home! well..i have been very close to falling and can only stand for 1.5 minutes, if that, and walking brings on respiratory distress. i have been gasping, sucking air! attractive sounding, huh? it isn't asthma, per se, it has components of something called "cardiac asthma." i don't really understand the distinction... i just know that we have been scared by the rapid decline of my lungs.
BUT
I AM BLESSED TO HAVE GREAT DOCTORS! i already have 2 letters of medical necessity, and today, i got the commitment for another one, and a very detailed one. i know that some of you out there probably are employees of an insurance company and are gritting your teeth! i have been very lucky to have insurance at all -- i was labelled "uninsurable" but faught tooth and nail, using the state's insurance comissioner to help -- something i recommend for anyone who is in that position.
the favorite letter so far comes from my pulmonary specialist and ends this way: "She must have a power wheelchair, and please supply this as soon as possible. Of course the power chair is medically necessary; if it were not necessary, it would not have been ordered" !!!!!
that cracked me up and i hope someone at bcbs will chuckle also as they reimburse me for the FIVE THOUSAND DOLLAR CHAIR THAT I BOUGHT TODAY AND PUT ON MY DISCOVER CARD! thank god. i am breathing better already and my guy is less worried. it is a jazzy 600 and i like it. it was delivered here to see if it "fit" my house and lifestyle. it is okay for outdoors (but who are we kidding? i don't go out except to see doctors and then i use a manual chair) and can be separated into portable parts if you happen to be a weight lifter! even the rep couldn't get it apart without a lot of muttering and flashlights.
I'VE GOT WHEELS AGAIN! already it is worth it. and there is a local charity that repairs medical equipment and they answered my e-mail about the old chair within 15 minutes -- on the phone and getting directions to come get it tomorrow. man, the world is often cruel and tough... but when it comes back around -- it moves fast!
prof-de-rien big smile |
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December 14, 2005, 5:57 pm PST
Quote From: helpless24 Yes in response to your questions I have a family history of ready and this quite long so bear with me Cancer,Diabetes,Heart Disease,Depression,HighBlood pressure,several members of my family have had to have surguries. Now onto the questions reguardin my back and shoulder pains ,I was involved as ateenager in a bus accident of which I was throw back against the seat very hard and hurt both my back and neck,now mind you that I my weight at the time was only 98lbs so that was the first incident ,2 was my mom ,my stepdad had someone back into their car I was in the backseat and got hurt pretty good on that one too also, I have scar tissue from a bone marrow bioposy they did at age 19,but pther than that my left shoulder has been in pain since last year I 'm not sure what I did to it yet. I had blood work done and X-rays to my neck,Left shoulder and ,Spinal cord to see what's causing the pain and also the X-ray techwas the one who said that they bfound something on the X-rays and that My Dr would tell me more about what they found .We aren't for sure on the stroke yet but yes tia is possibility at this point in time . If you have any other questions please let me know and please keep in contact with me also my screen name is the only one left available according to the web site sign in regarding your screen name -- i was trying to joke because i don't think anyone is truly helpless and i hope you're not. i can hear a lot of frustration and worry, though.
i am in no way a health care professional -- since my health went south, i've tried to be as current about my stuff as i possibly could. then, more importantly, i tried not to develop every disease or symptom that i read about! it's a fine line -- being an advocate for yourself but not being overbearing or undercutting the doctors, you know? having someone with me helped me to stop interrupting, for instance -- now, when i hear a polite little cough, i stop talking. the doctors, these days, are specialists, for most part. so when i go off about heart failure to the orthopedic surgeon, i am taxing that doctor's patience!
you have a family history of a lot of things. if you have recently had a check-up, then you're in a great position to ask for some preventive proaction! get periodic cancer screening -- and try not to worry in the time in between! it sounds like your doctor is doing all the right things to address your painful shoulder/back. since the pain has been with you over a long period of time -- since last year -- you may want to ask yourself why it is worse, why it is bothering you more now. stress and worry are incredibly hard on the body as well as the psyche. sometimes i am resistant to that fact and i just end up depriving myself of help because of some fear of seeming weak. my pain levels are very much helped by seeing a pain counselor. she lets me run the agenda but the major work is to decrease stress and worry -- and to learn not to use manipulative "sick" behavior, both unconsciously and consciously.
as for that x-ray tech, s/he didn't have the right to say that to you. those tests need to be read by a radiologist, first of all. if there were something terribly wrong, they really will track you down! however, if you really are stressing out about it -- call the doctor's offic and say, "i am having a huge stress over the results of these x-rays. is there anything that you could do, either about my anxiety or about getting the reading sooner?" you might want to mention that an x-ray tech told you there was something wrong... doctors hate that! it's makes it so hard to get respect! ar ar ar!
okay... who is the "we" that is looking into the possibility of a stroke or tia? get to an ER NOW if you are having or have recently had stroke symptoms. what i do KNOW about strokes: you don't sit around for a week discussing whether you've had one or not. i think you really need to calm down and turn this over to professionals and allow them to do their job.
do you have friends or family to help you go to all these appointments or even to help with the really stressful phone calls? i'll be thinking of you, for sure! positively thoughts headed your way -- prof-de-rien |
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December 15, 2005, 12:16 pm PST
i think that "speclady" must stand for "special lady," because you are definitely a class act. please go ahead and cry -- sad and stressful things are happening right and left in your family -- what really comes through is how much you care for everyone and how much you literally feel their pain. you have physical symptoms of much stress -- listen to your body even as you are taking care of everyone else. you know, people are generally more tough than we think they are. i have very thin skin, for instance, and i am perpetually needy, but if i am presented with ways to pull my own weight or to contribute more to whatever the situation is -- well, after a brief pause for introspection, i usually come around.
aha! a lightbulb moment. a memory... brief pause while i dig for the lyrics...
simple gifts [shaker tune? folk song? help me, people!] 'tis a gift to be simple 'tis a gift to be free 'tis a gift to come round where we want to be. and when we find ourselves in the place that is right we will be in the valley of love and delight. when true simplicity is gained to bow and to bend we shall not be ashamed. to turn and to turn will be our delight til by turning, turning we come round right.
blessings to you and yours. i hope therapy helps, venting can do wonders! your daughters are alive, your husband also. and those who are so very ill -- how much control do you really have over that? as the bald man says: "how's'it working for 'ya?"
thinking of you -- prof-de-rien |
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December 17, 2005, 4:56 pm PST
Quote From: suede3456 Hi! my name is Joani and I have had Fibromyalgia for over 12 yrs. I used to be a very active woman and had a lot of plans for my future but it all came to an end when I was pushed down my basement stairs by an Ex husband, thats when my problems started health wise. I have lived with chronic pain for a long time and my Doc is finally getting me the help I so dearly needed. He is also studying up on Fibro because he has sooo many patients with this terrible disease. It has also affected my thyroid and that is just another problem for my Doc to figure out...dang does it ever stop?? I wish Dr. Phil would have a show on chronic pain or FMS, I think it would help alot of people understand exactly what we all go through. At first it was said that it was all in our heads, but further research shows different, yes of course stress can make it worse, stress can make any disease worse. I have had alot of mental tests and passed them with flying colors and I know of thousands and thousands of others that feel the same way I do. Does anyone have any input on this subject? Nice to meet you all, Much Love and gentle hugs, Joani i have the distinct feeling that i post too often! that said, though, i felt that you should be welcomed, joani. fibromyalgia, lucky for me, is not the cause of my pain. 12 years of suffering is extraordinary -- by that i i mean that in the medical hierarchy, what isn't understood is consigned, most often, to female [read: hysterical] exaggeration and invention. just a few buzz words to say "made up."
i do share with you a thyroid condition -- probably like everyone with auto-immune disorders -- hashimoto's thyroiditis. it really is just a grand sounding name for a common hypothyroid condition. it is handled by a pill a day -- and you will feel much rejuvenated when your body gets the necessary hormones. the thing that more open-minded doctors and reseachers are piecing together is a syndrome of auto-immune diseases -- hypothyroidism, addison's, most pain disorders [including fibromyalgia and rsd/crps and every thing they cannot nail down but shares pain as a major symptom. just what you've been looking forward to -- more acronyms!
i have a minority opinion about why dr. phil hasn't yet had a show dedicated to chronic pain, or fibromyalgia or rsd/crps or avascular necrosis, or hashimoto's... or whatever. we can seem a morose bunch, ruled by our pain instead of giving in to it. ha. i laugh at that, and i do it without emoticon. we tend to vent more than others, too! no one recognizes the essence of such expressions are a means to release ourselves from our pain... [did i say all that correctly?]
sorry to ramble on.. and welcome. i am sure the fibro folk will come along soon. happy holidays! prof-de-rien
i would
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