Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 I'd like to jump in here, too. My daughter, Sofia, age 5.5, has TC and caudal regression, and I've found that during the two surgeries and three other hospitalizations we've been through since her adoption, pain has been a real problem for us. At first, I thought she was shutting down emotionally when in pain, then I thought she was deliberately not telling us when she was in pain for fear of taking meds. But it looks like she simply cannot articulate pain properly. (We've learned to use words like 'feel funny' instead of hurt.) I question if she is even fully feeling what her body is going through and I'm wondering if a body will react to pain (she will vomit) while there is no conscious 'feeling' of pain (in the brain?)? Can anyone tell me if this is so? Too many times we've had nurses say things like " she's sleeping so peacefully, she can't be in pain, " or " she's moving around, she can't be in pain " and now we know this is NOT true for Sofia. So when the medical team shuts off the morphine and says 'give pain meds as needed' we start running into problems. (I too have found pain management teams to be somewhat 'cool' and seemingly only interested in getting patients OFF of pain meds, not necessarily on the right med to relieve their pain). We will be having our biggest surgery later this winter and I'm really concerned about properly controlling her pain this time so she recovers as quickly as possible. I know we lost AT LEAST one day to pain during our last surgery. It may not seem like much at first, but when your five year old is begging you for 'water & ice' and it's the fourth day you're still having to say NO, it's BAD! (they wouldn't give her anything because she had vomited.) Needless to say, none of the physicians believes us. (When Sofia vomited, as I mentioned before, that was our wakeup call that she was in pain, even though she kept saying she wasn't.) The doc ordered a dose of Zophran...we started giving her the pain meds every four hours on the button. He still thinks his Zophran was the magic cure! Anyway, sorry for the novel...what I'm wondering is- who can help me plan? Is that something a physiatrist can help with? Is there anyone who understands these kind so of things, or am I really off my nut after all? Thanks, Stacey mom to Sofia age 5 IA, TC, CRS > > It's interesting that you brought this up because I was thinking about this topic the last few days. > > I don't really classify my conditional as so much as painful but more on the level of intense pressure that fluctuates throughout the day and week. I am not sure if others have the same type of pressure I feel but the best description I have heard is like being caught in a pair of vice grips/ wrench extending all the way from my chest to my toes. > > As far as the way I manage this I very sparsely use meds and only usually when it gets to a point where it is unbearable. I do use breathing exercises and Mindfulness Meditation (has helped me sleep better at night). I also limit physical activity based on my tolerance level like Jen described. Unfortunately I can only take small steps and ise a cane for support. > > > Sent via BlackBerry by AT & T > > pain support > > I would like to know how everyone treats his pain in praktical way. > This is i think i great subject. I have learn great lessons. > Pain is not always go away and as we talk about it now. > Most know how important it is for them. > > Just some points: > > You need to drive 100 miles Are you make a stop one ore 2 � 3 times because > it beter for you.? > You go to a football match. Are you stay on your place whole match ore go of > you seat for a walk one ore two times ? > Just two important things where you need to make a desision ore not to have > a great time ore a worse one on the end. > > For myself i not need to listen to my body. I need to live different to > manage my days. > If i can only sit for ten minutes on a bad chair, i need to do stand up ore > walk a little time. If it is just two minutes. > > You welcome to give you opinion how you do it. Ore how you actually must do > it > > > Looking forward to you answers. > JW > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Dealing with post-op pain is different than chronic pain management. The management of her post op pain is something u should discuss with her surgeon before surgery. If he is unwilling to agree to a pain management plan u find acceptable, I would find a surgeon who can. I was very clear about my concerns going into my second surgery bc my pain was so poorly managed after my first. We made an agreement before I scheduled my surgery. If someone is in the hospital & u r having problems with pain not being managed properly, most hospitals have patient advocates u can meet with that can help. I'm sorry to hear she is having to go thru all this. Sent from my iPhone I'd like to jump in here, too. My daughter, Sofia, age 5.5, has TC and caudal regression, and I've found that during the two surgeries and three other hospitalizations we've been through since her adoption, pain has been a real problem for us. At first, I thought she was shutting down emotionally when in pain, then I thought she was deliberately not telling us when she was in pain for fear of taking meds. But it looks like she simply cannot articulate pain properly. (We've learned to use words like 'feel funny' instead of hurt.) I question if she is even fully feeling what her body is going through and I'm wondering if a body will react to pain (she will vomit) while there is no conscious 'feeling' of pain (in the brain?)? Can anyone tell me if this is so? Too many times we've had nurses say things like " she's sleeping so peacefully, she can't be in pain, " or " she's moving around, she can't be in pain " and now we know this is NOT true for Sofia. So when the medical team shuts off the morphine and says 'give pain meds as needed' we start running into problems. (I too have found pain management teams to be somewhat 'cool' and seemingly only interested in getting patients OFF of pain meds, not necessarily on the right med to relieve their pain). We will be having our biggest surgery later this winter and I'm really concerned about properly controlling her pain this time so she recovers as quickly as possible. I know we lost AT LEAST one day to pain during our last surgery. It may not seem like much at first, but when your five year old is begging you for 'water & ice' and it's the fourth day you're still having to say NO, it's BAD! (they wouldn't give her anything because she had vomited.) Needless to say, none of the physicians believes us. (When Sofia vomited, as I mentioned before, that was our wakeup call that she was in pain, even though she kept saying she wasn't.) The doc ordered a dose of Zophran...we started giving her the pain meds every four hours on the button. He still thinks his Zophran was the magic cure! Anyway, sorry for the novel...what I'm wondering is- who can help me plan? Is that something a physiatrist can help with? Is there anyone who understands these kind so of things, or am I really off my nut after all? Thanks, Stacey mom to Sofia age 5 IA, TC, CRS > > It's interesting that you brought this up because I was thinking about this topic the last few days. > > I don't really classify my conditional as so much as painful but more on the level of intense pressure that fluctuates throughout the day and week. I am not sure if others have the same type of pressure I feel but the best description I have heard is like being caught in a pair of vice grips/ wrench extending all the way from my chest to my toes. > > As far as the way I manage this I very sparsely use meds and only usually when it gets to a point where it is unbearable. I do use breathing exercises and Mindfulness Meditation (has helped me sleep better at night). I also limit physical activity based on my tolerance level like Jen described. Unfortunately I can only take small steps and ise a cane for support. > > > Sent via BlackBerry by AT & T > > pain support > > I would like to know how everyone treats his pain in praktical way. > This is i think i great subject. I have learn great lessons. > Pain is not always go away and as we talk about it now. > Most know how important it is for them. > > Just some points: > > You need to drive 100 miles Are you make a stop one ore 2 � 3 times because > it beter for you.? > You go to a football match. Are you stay on your place whole match ore go of > you seat for a walk one ore two times ? > Just two important things where you need to make a desision ore not to have > a great time ore a worse one on the end. > > For myself i not need to listen to my body. I need to live different to > manage my days. > If i can only sit for ten minutes on a bad chair, i need to do stand up ore > walk a little time. If it is just two minutes. > > You welcome to give you opinion how you do it. Ore how you actually must do > it > > > Looking forward to you answers. > JW > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Thank you, . I will be adamant about having a solid pain plan in place this time. I did some more research last night and it really looks like during Sofia's four episodes of ovarian torsion, she was having autonomic dsyreflexia type reaction. She would present with hypertension, slow heart rate, and vomiting. She has never had hypertension outside of those painful episodes, but just because they had labeled her 'complicated' they kept insisting that her kidneys were to blame. Once the torsion was diagnosed ans surgically corrected, they still wouldn't back off and wanted her on enalapril for the rest of her life! She does NOT have HBP! This was an obvious pain reaction and even after the fact, they are loathe to admit it! So frustrating! Oh, well, I'll be better prepared next time, I'm thankful for that.: ) Stacey mom to Sofia age 5 > > > > It's interesting that you brought this up because I was thinking about > this topic the last few days. > > > > I don't really classify my conditional as so much as painful but more on > the level of intense pressure that fluctuates throughout the day and week. I > am not sure if others have the same type of pressure I feel but the best > description I have heard is like being caught in a pair of vice grips/ > wrench extending all the way from my chest to my toes. > > > > As far as the way I manage this I very sparsely use meds and only usually > when it gets to a point where it is unbearable. I do use breathing exercises > and Mindfulness Meditation (has helped me sleep better at night). I also > limit physical activity based on my tolerance level like Jen described. > Unfortunately I can only take small steps and ise a cane for support. > > > > > > Sent via BlackBerry by AT & T > > > > pain support > > > > I would like to know how everyone treats his pain in praktical way. > > This is i think i great subject. I have learn great lessons. > > Pain is not always go away and as we talk about it now. > > Most know how important it is for them. > > > > Just some points: > > > > You need to drive 100 miles Are you make a stop one ore 2 � 3 times > because > > it beter for you.? > > You go to a football match. Are you stay on your place whole match ore go > of > > you seat for a walk one ore two times ? > > Just two important things where you need to make a desision ore not to > have > > a great time ore a worse one on the end. > > > > For myself i not need to listen to my body. I need to live different to > > manage my days. > > If i can only sit for ten minutes on a bad chair, i need to do stand up > ore > > walk a little time. If it is just two minutes. > > > > You welcome to give you opinion how you do it. Ore how you actually must > do > > it > > > > > > Looking forward to you answers. > > JW > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Hi Stacey, First of all a queustion, is your little one checked on diabethes to ? I try to give a answer of my own felling as a child (i remember these things like yesterday) As a child i felt i did something wrong because mom and dad talked about me behind my back. Now my mom has learned from this also. If someone complain ore just make a compliment , she always say " do it in front of the kids " . Their granny is the best , her grandchildren tell her always. But she now she had to do this by het son to. We both have a great relation now. But i feel often be put outside the field. Cause i just was thinking it is wrong to talk about pain. Doctors these days talk about and with the kids to what is going on. Around 1970 i had to wait outside. Realy i hated this. ==== I am not sure Stacey , They always attack people, " it stay between your ears " When i was older a jung doctor told me, you must answer with " yes " . I can prommise you when a kid answer i have pain and it comes between my ears, It wins from every smart adult. Fact is you brain rules the body. When a child can't sleep (i talk about myself as a kid) it wil feel more symptones of pain. ==== Are the nurses also a doctor these day's LOL , i know they can do a lot.. But a good nurse will leave this answer to a docter. ==== I made a Tagline as welcome to new patients on my pain clinic, It is wrote down by a other patient that made a painting i the waitingroom. " A World Where People Have No Pain, We Try To Starting it Here " ==== When i was in a lot of pain as a child and still now my head blows up due some reason and i always have to vomit. " Sick of pain maby " I am not believe a child vomit taking water ice. Then there must be some other reason. And drinking water can never be wrong. It is maby that they not like to cath her a extra time. If someone vomited, they need to drink. Cause otherwise they dry out right . At least this is what i learned. ==== There you go , The girl want ice right. If she tell she have pain, she can't have a candy ore ice right. :smile: Stacey, it must be hard to see your kid in pain. But as it is now and on older age i talked to my parents about it. It is something maby like, I controlled my pain so don't worry. You just must be awaere of here pain. As a child pain was normal. But when i did something wrong and my dad hit me with his newspaper only one time. I cry of pain so load that our neaghbour ask me with a smile on his face. when i was outside has daddy hurt you butt yesterday. AUW thath hurts my mom too. So Mom and dad had words wheen he came home after work and then he was hurting too. Fact : my mom got mad when dad slept me with his newspaper on my butt , just she was aware of thath strange birthmark on my back. And daddy took me out fishing. That was real save. and far away from my mom. If i had a fight with my dad at older age . It results always in making fishing tackles ready. And also when i told him i was in pain. ==== when i landed in a wheelchair, can't continu my job, i rehabilitatate 6 months in a Special Hospital http://www.dehoogstraat.nl/english The Psychological assistant, Psychologist, Social Worker the most for me Simple by the fact that it is you that need to be complete aware of you situation. They not rebuilt you, it is you that look in youself. They learn to go deep inside. And if you not sure how get it done they give answers, But they let it up to you. I still love them for be so openminded and take so much time. I am lucky i was in the program. And i wouldn't be myself if there was nothing left of me there. I develop a weekly patient + painteam meeting. Talk to eachother patients and proffecionals (Psychological assistant, Psychologist, Rehabilitation Doctor and physician assistant) I know now it is continued for the 4 th season. I bin always a thinker (also about my pain) they learn how to manage it but also do something with it. Every sesion was to short (only one hour) after tree sesions i had the feeling i was in 5 min. when it was time to go. There was realy nothing left of the person in pain. The bootcamp was peace of cake. Swimming 5 days a week and ordered to rest. but you was not alowed to sleep they woke you up. You need to sleep at night. It the hospital in the Netherlands where children and adutls are under one roof. And they have the worsed cases there. Children have their own program ofcourse. I that 6 months i had one wish to spend my relaxing hours working as a clini clown. And that was fun. Kids that where terminal ill i gave the best time of there life Rehabilitation Doctor told me if i still ble to handle it after but i told him " NO " 6 months where enough. 4 kids died there. one with X-mas and he died as Santa Claus with a smile on his face i was suppost to do an act with that boy. I was changed Stacey and they not changed me. So do no be affraid to go to a proffesional . But i recomend in your case someone from a childrens hospital. A lot proffesionals that ready to support me there. **Psychological assistant **Psychologist **Rehabilitation Doctor and physician assistant *Rehabilitation Technician Sexologist *Trainee Sport and physical therapist **Nursing **Activities Therapist Cognitive Therapist *Consultant adapted sports Dietician **Physiotherapist *Spiritual counselor **Adult Clinic Team Leader Speech therapist *Social Worker Orthotist *Orthopedic technician Kitchen assistant department (clinic) Medical Secretary Music Therapist Planner Occupational therapist Painsupport team (** all above participate in it.) counceling als * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2010 Report Share Posted December 8, 2010 Thank you, Jan.Willem. : ) I have begun seeking out which professionals can help us make a good plan for pain management at Sofia's next surgery. Thank you for the reminder that Sofia should be involved in the conversations. She's only five, so sometimes I forget she has opinions and input about things! I'm glad you learned how to use the system to your advantage in getting the care you needed. I will try to do that for Sofia, too.: ) Stacey mom to Sofia age 5 > > Hi Stacey, > > First of all a queustion, is your little one checked on diabethes to ? > I try to give a answer of my own felling as a child (i remember these things > like yesterday) > > As a child i felt i did something wrong because mom and dad talked about me > behind my back. > Now my mom has learned from this also. If someone complain ore just make a > compliment , she always say " do it in front of the kids " . > Their granny is the best , her grandchildren tell her always. But she now > she had to do this by het son to. We both have a great relation now. > But i feel often be put outside the field. Cause i just was thinking it is > wrong to talk about pain. > > Doctors these days talk about and with the kids to what is going on. > Around 1970 i had to wait outside. Realy i hated this. > > ==== > > I am not sure Stacey , They always attack people, " it stay between your > ears " When i was older a jung doctor told me, you must answer with " yes " . > I can prommise you when a kid answer i have pain and it comes between my > ears, It wins from every smart adult. > Fact is you brain rules the body. When a child can't sleep (i talk about > myself as a kid) it wil feel more symptones of pain. > > ==== > Are the nurses also a doctor these day's LOL , i know they can do a lot.. > But a good nurse will leave this answer to a docter. > ==== > I made a Tagline as welcome to new patients on my pain clinic, It is wrote > down by a other patient that made a painting i the waitingroom. > " A World Where People Have No Pain, We Try To Starting it Here " > ==== > When i was in a lot of pain as a child and still now my head blows up due > some reason and i always have to vomit. > " Sick of pain maby " I am not believe a child vomit taking water ice. Then > there must be some other reason. > And drinking water can never be wrong. It is maby that they not like to cath > her a extra time. > If someone vomited, they need to drink. Cause otherwise they dry out right . > At least this is what i learned. > ==== > There you go , The girl want ice right. If she tell she have pain, she can't > have a candy ore ice right. :smile: > Stacey, it must be hard to see your kid in pain. But as it is now and on > older age i talked to my parents about it. > It is something maby like, I controlled my pain so don't worry. You just > must be awaere of here pain. > As a child pain was normal. But when i did something wrong and my dad hit me > with his newspaper only one time. > I cry of pain so load that our neaghbour ask me with a smile on his face. > when i was outside has daddy hurt you butt yesterday. > AUW thath hurts my mom too. So Mom and dad had words wheen he came home > after work and then he was hurting too. > Fact : my mom got mad when dad slept me with his newspaper on my butt , just > she was aware of thath strange birthmark on my back. > And daddy took me out fishing. That was real save. and far away from my mom. > If i had a fight with my dad at older age . It results always > in making fishing tackles ready. And also when i told him i was in pain. > > ==== > > when i landed in a wheelchair, can't continu my job, i rehabilitatate 6 > months in a Special Hospital > http://www.dehoogstraat.nl/english > > The Psychological assistant, Psychologist, Social Worker the most for me > Simple by the fact that it is you that need to be complete aware of you > situation. > They not rebuilt you, it is you that look in youself. They learn to go deep > inside. > And if you not sure how get it done they give answers, But they let it up to > you. > I still love them for be so openminded and take so much time. > I am lucky i was in the program. > And i wouldn't be myself if there was nothing left of me there. > I develop a weekly patient + painteam meeting. > Talk to eachother patients and proffecionals (Psychological assistant, > Psychologist, Rehabilitation Doctor and physician assistant) > I know now it is continued for the 4 th season. I bin always a thinker (also > about my pain) they learn how to manage it but also do something with it. > Every sesion was to short (only one hour) after tree sesions i had the > feeling i was in 5 min. when it was time to go. > There was realy nothing left of the person in pain. The bootcamp was peace > of cake. Swimming 5 days a week and ordered to rest. > but you was not alowed to sleep they woke you up. You need to sleep at > night. > It the hospital in the Netherlands where children and adutls are under one > roof. > And they have the worsed cases there. Children have their own program > ofcourse. > I that 6 months i had one wish to spend my relaxing hours working as a clini > clown. > And that was fun. Kids that where terminal ill i gave the best time of there > life > Rehabilitation Doctor told me if i still ble to handle it after but i told > him " NO " > 6 months where enough. 4 kids died there. one with X-mas and he died as > Santa Claus with a smile on his face i was suppost to do an act with that > boy. > > I was changed Stacey and they not changed me. > So do no be affraid to go to a proffesional . > But i recomend in your case someone from a childrens hospital. > > > A lot proffesionals that ready to support me there. > **Psychological assistant > **Psychologist > **Rehabilitation Doctor and physician assistant > *Rehabilitation Technician > Sexologist > *Trainee > Sport and physical therapist > **Nursing > **Activities Therapist > Cognitive Therapist > *Consultant adapted sports > Dietician > **Physiotherapist > *Spiritual counselor > **Adult Clinic Team Leader > Speech therapist > *Social Worker > Orthotist > *Orthopedic technician > Kitchen assistant department (clinic) > Medical Secretary > Music Therapist > Planner > Occupational therapist > > Painsupport team (** all above participate in it.) > counceling als * > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2010 Report Share Posted December 10, 2010 Poor thing. If, and when she gets her fatty filum release. New nsg doesn't want to call it tc because her conus lays at bottom of T2 and not below it. But you can see a small fatty filum. 1st nsg said no to tc and said there is nothing to cut. It is only a speck. Lucky for me the neurologist is the one to tell me to see another nsg. Neurologist said she has all the indications. some bowel & bladder incontinences, weak legs, falls a lot, clubfoot bl, poor muscle tone. tires easily. low stamina. I too am somewhat nervous about making sure she is covered for the pain when she does get the surgery. When did you adopt Sofia. She is so young to have so many surgeries. What were they for? Hopefully, you will get a sympathetic nurse whom will advocate for your daughter if need be. Nurses usually tend to listen a little better but of course it will all depend on who you get, unfortuatly. Sometimes having a heart to heart talk with the surgeon and anesthesiologist helps some. To let them know how your daughter is and that you know her well enough to know when she is in pain. Sorry, she had to go thru this. carol ________________________________ To: tetheredspinalcord Sent: Tue, December 7, 2010 6:32:22 PM Subject: Re: pain support  I'd like to jump in here, too. My daughter, Sofia, age 5.5, has TC and caudal regression, and I've found that during the two surgeries and three other hospitalizations we've been through since her adoption, pain has been a real problem for us. At first, I thought she was shutting down emotionally when in pain, then I thought she was deliberately not telling us when she was in pain for fear of taking meds. But it looks like she simply cannot articulate pain properly. (We've learned to use words like 'feel funny' instead of hurt.) I question if she is even fully feeling what her body is going through and I'm wondering if a body will react to pain (she will vomit) while there is no conscious 'feeling' of pain (in the brain?)? Can anyone tell me if this is so? Too many times we've had nurses say things like " she's sleeping so peacefully, she can't be in pain, " or " she's moving around, she can't be in pain " and now we know this is NOT true for Sofia. So when the medical team shuts off the morphine and says 'give pain meds as needed' we start running into problems. (I too have found pain management teams to be somewhat 'cool' and seemingly only interested in getting patients OFF of pain meds, not necessarily on the right med to relieve their pain). We will be having our biggest surgery later this winter and I'm really concerned about properly controlling her pain this time so she recovers as quickly as possible. I know we lost AT LEAST one day to pain during our last surgery. It may not seem like much at first, but when your five year old is begging you for 'water & ice' and it's the fourth day you're still having to say NO, it's BAD! (they wouldn't give her anything because she had vomited.) Needless to say, none of the physicians believes us. (When Sofia vomited, as I mentioned before, that was our wakeup call that she was in pain, even though she kept saying she wasn't.) The doc ordered a dose of Zophran...we started giving her the pain meds every four hours on the button. He still thinks his Zophran was the magic cure! Anyway, sorry for the novel...what I'm wondering is- who can help me plan? Is that something a physiatrist can help with? Is there anyone who understands these kind so of things, or am I really off my nut after all? Thanks, Stacey mom to Sofia age 5 IA, TC, CRS > > It's interesting that you brought this up because I was thinking about this >topic the last few days. > > > I don't really classify my conditional as so much as painful but more on the >level of intense pressure that fluctuates throughout the day and week. I am not >sure if others have the same type of pressure I feel but the best description I >have heard is like being caught in a pair of vice grips/ wrench extending all >the way from my chest to my toes. > > > As far as the way I manage this I very sparsely use meds and only usually when >it gets to a point where it is unbearable. I do use breathing exercises and >Mindfulness Meditation (has helped me sleep better at night). I also limit >physical activity based on my tolerance level like Jen described. Unfortunately >I can only take small steps and ise a cane for support. > > > > Sent via BlackBerry by AT & T > > pain support > > I would like to know how everyone treats his pain in praktical way. > This is i think i great subject. I have learn great lessons. > Pain is not always go away and as we talk about it now. > Most know how important it is for them. > > Just some points: > > You need to drive 100 miles Are you make a stop one ore 2 � 3 times because > it beter for you.? > You go to a football match. Are you stay on your place whole match ore go of > you seat for a walk one ore two times ? > Just two important things where you need to make a desision ore not to have > a great time ore a worse one on the end. > > For myself i not need to listen to my body. I need to live different to > manage my days. > If i can only sit for ten minutes on a bad chair, i need to do stand up ore > walk a little time. If it is just two minutes. > > You welcome to give you opinion how you do it. Ore how you actually must do > it > > > Looking forward to you answers. > JW > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2010 Report Share Posted December 11, 2010 Hi Carol, A small, overactive bladder sounds neurogenic to me (but I'm not a doctor). I've heard the names Frim, Fuchs, and Mangano, but not sure of who may be in CA. If you make a new post, I'm sure you'll get some good recommendations. I've heard of people getting three or four opinions for TC before making a decision about surgery, so don't feel bad if you feel you need to do that for your daughter, too. Some of these doc will consult without a visit, but others can guide you better as to which docs do that. Sofia is on ditropan for her bladder. Normally we do daily large volume, cath and bag enemas for B management, but after the last surgery Sofia got a temp. ileostomy. It will be reversed on about two months and she'll get a malone. About the ovarian torsion, Sofia presented with high blood pressure, vomiting, and abdominal pain. It took four admissions before they gave her a simple abdominal ultrasound which showed the inflamed ovary. They had given her every kidney test under the sun, and even a brain scan! : ( Stacey mom to Sofia age 5 > > > > > > It's interesting that you brought this up because I was thinking about this > > >topic the last few days. > > > > > > > > > I don't really classify my conditional as so much as painful but more on the > > > >level of intense pressure that fluctuates throughout the day and week. I am > >not > > > > >sure if others have the same type of pressure I feel but the best description > >I > > > > >have heard is like being caught in a pair of vice grips/ wrench extending all > > > >the way from my chest to my toes. > > > > > > > > > As far as the way I manage this I very sparsely use meds and only usually > >when > > > > >it gets to a point where it is unbearable. I do use breathing exercises and > > >Mindfulness Meditation (has helped me sleep better at night). I also limit > > >physical activity based on my tolerance level like Jen described. > >Unfortunately > > > > >I can only take small steps and ise a cane for support. > > > > > > > > > > > > Sent via BlackBerry by AT & T > > > > > > pain support > > > > > > I would like to know how everyone treats his pain in praktical way. > > > This is i think i great subject. I have learn great lessons. > > > Pain is not always go away and as we talk about it now. > > > Most know how important it is for them. > > > > > > Just some points: > > > > > > You need to drive 100 miles Are you make a stop one ore 2 � 3 times > >because > > > > > it beter for you.? > > > You go to a football match. Are you stay on your place whole match ore go of > > > > you seat for a walk one ore two times ? > > > Just two important things where you need to make a desision ore not to have > > > a great time ore a worse one on the end. > > > > > > For myself i not need to listen to my body. I need to live different to > > > manage my days. > > > If i can only sit for ten minutes on a bad chair, i need to do stand up ore > > > walk a little time. If it is just two minutes. > > > > > > You welcome to give you opinion how you do it. Ore how you actually must do > > > it > > > > > > > > > Looking forward to you answers. > > > JW > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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