New

[Guest guest]

Hey ,

Welcome to this group....I hope you will find here a new family,

As I and many others have...

If you stay with us, you will find support, love, compassion, knowledge and

wisdom from folks who are and have been where you are now...as far as an answer

to your question, I have not found many if any natural remedies to replace the

medications used to treat Still's.

However, I am finding more and more research supporting some very healthful

benefits of a 'natural' diet.....natural foods are being found to diminish the

ravishing effects of an immune system on hyper-drive and even are being shown to

'reset' our inflammatory system. I suggest researching all the info you van

find re inflammation, and of course Still's (what little there is).....anyway, I

wish you the very best on your road ahead.

Many Blessings!

Larry B.

http://docs.yahoo.com/info/terms/

[Guest guest]

Hi !

Being this disease effects everyone differently it's hard to pinpoint

any natural remedies to " control " pain. For Fibromyalgia people use

Malic Acid and Magnisium but there's no clean cut thing to take for

Stills. Some use Fish oils, perhaps Bee Pollen even vitamin B-complex.

Sorry it took so long for you to get diagnosed. It's difficult to

diagnose. May I ask in what state do you live?

Take care and be well.

Ellen

[Guest guest]

Hi !

Being this disease effects everyone differently it's hard to pinpoint

any natural remedies to " control " pain. For Fibromyalgia people use

Malic Acid and Magnisium but there's no clean cut thing to take for

Stills. Some use Fish oils, perhaps Bee Pollen even vitamin B-complex.

Sorry it took so long for you to get diagnosed. It's difficult to

diagnose. May I ask in what state do you live?

Take care and be well.

Ellen

[Guest guest]

Hi !

Being this disease effects everyone differently it's hard to pinpoint

any natural remedies to " control " pain. For Fibromyalgia people use

Malic Acid and Magnisium but there's no clean cut thing to take for

Stills. Some use Fish oils, perhaps Bee Pollen even vitamin B-complex.

Sorry it took so long for you to get diagnosed. It's difficult to

diagnose. May I ask in what state do you live?

Take care and be well.

Ellen

[Guest guest]

Hi,

I am on Shark cartilage, it is for the joints. It helps me with my hip that was

hurting badly. I also take Calcium and vitamins. All this along with regular

meds.

Greetings

Claudio s

escribió: Hi,

I became sick in 2005. I have been to multiple doctors and finally was

diagnosed with AOSD this month. I have been trying to find information

on the disease, but there doesn't seem to be much out there.

I was wondering if anyone here does natural treatments for the

disease? I have been on a lot of meds over the last two years with not

much help. I started taking vitamins and I seem to have less flares. I

would love to find some natural ways to control this disease.

__________________________________________________

Correo Yahoo!

Espacio para todos tus mensajes, antivirus y antispam ¡gratis!

Regístrate ya - http://correo.espanol.yahoo.com/

[Guest guest]

Hi,

I am on Shark cartilage, it is for the joints. It helps me with my hip that was

hurting badly. I also take Calcium and vitamins. All this along with regular

meds.

Greetings

Claudio s

escribió: Hi,

I became sick in 2005. I have been to multiple doctors and finally was

diagnosed with AOSD this month. I have been trying to find information

on the disease, but there doesn't seem to be much out there.

I was wondering if anyone here does natural treatments for the

disease? I have been on a lot of meds over the last two years with not

much help. I started taking vitamins and I seem to have less flares. I

would love to find some natural ways to control this disease.

__________________________________________________

Correo Yahoo!

Espacio para todos tus mensajes, antivirus y antispam ¡gratis!

Regístrate ya - http://correo.espanol.yahoo.com/

[Guest guest]

Hi,

I am on Shark cartilage, it is for the joints. It helps me with my hip that was

hurting badly. I also take Calcium and vitamins. All this along with regular

meds.

Greetings

Claudio s

escribió: Hi,

I became sick in 2005. I have been to multiple doctors and finally was

diagnosed with AOSD this month. I have been trying to find information

on the disease, but there doesn't seem to be much out there.

I was wondering if anyone here does natural treatments for the

disease? I have been on a lot of meds over the last two years with not

much help. I started taking vitamins and I seem to have less flares. I

would love to find some natural ways to control this disease.

__________________________________________________

Correo Yahoo!

Espacio para todos tus mensajes, antivirus y antispam ¡gratis!

Regístrate ya - http://correo.espanol.yahoo.com/

[Guest guest]

WELCOME TO THE GROUP;; LAURIE HUGS DORTLaurie H <Mana_olana@...> wrote: 1) Laurie H.2) WA / from HI3) Behcets, Sleep apnea/OSA, bells palsy, carpal tunnel, hypothyroid, back pain, menopause, hiatal hernia. One dau, 18; one cat, married. 4) Interests - used to crochet / until carpal tunnel, yoga.5) Email NO.6) ICQ / AOL / MSN (these are those contacts... list your numbers ifyou wish to be contacted via ICQ, MSN or AOL)/none7) Webpage http://www.myspace.com/nwhawaiian 8) Birthday Mar 12.

[Guest guest]

WELCOME TO THE GROUP SARA;; WOW;; YOU HAVE A LOT GOING ON FOR BEING SO YOUNG;; THIS GROUP OF PEOPLE ARE AWESOME;; LOTS OF SUPPORT HERE \HUGS \DORT FROM MICHSara <browncoatrebel.al@...> wrote: Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling

vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo

attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon

ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Hi Sara!

I was too tired to answer when I read your letter, but better now after good sleep and some chiropractic.

I can't imagine how you could be so strong to be at college with all you are going through! You are amazing!

And I can't imagine how the doctors and all could be SO blind/etc...

well, yes, actually I can....

it's so very very hard to find medical folks who are willing to take the time to learn who you are and what you know, and what your 'case' is...

and then hopefully to know you best as a PERSON!!!

I am also depressed that your profs et al don't really want to have to deal with 'what to do' in case you might be in major trouble -- I can understand that they might be frightened at the prospect, but...

and goodness having severe vertigo on top of it -- it used to knock out my very strong mother periodically, and hers was relatively 'mild'

I"m lucky that I look awful when I don't feel good - and I don't try to hide how I feel

Wow again and best of luck as you fight your way through this morass -- can you get a helper of some sort -- peer support -- or a 'townie'?

Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Hi nice to meet you.I've not had good experiences with the medical profession, in general. I do have a wonderful GP, but there's only so much he can do, you know? I hate being stuck using our local university hospital system. Granted, in terms of research and cutting-edge treatments, they're wonderful...but I'm a person, too, and IMO that's too easily forgotten in medicine. I'm more than a bunch of anatomical parts, and I'm more than a disease (or three).

Because I'm young, too, a lot of doctors assume that I'm stupid or can't understand them if they give me technical explanations. Yes, I'm young, and yes, I'm an English and Chinese major. But I'm also intelligent and an obsessive researcher. When my AVM was diagnosed, the neurologist just said, " We found something in your brain scans, " handed me a sheet of paper, and left. " So they found out I do have a brain, " I said. The paper he gave me was all in doctor talk, but I spent hours online researching until I understood and could " talk shop. " By the time I saw the neurosurgeon, I knew the drill. I started out talking to him using technical medical terms and told him what treatment I thought was best for me--which, consequently, was the same thing he'd already decided to recommend. A lot of doctors really hate it when you do that, though. There's definitely a God complex going on with a lot of them. I ruptured an eardrum last year right before a karate tournament, so I went to student health at my university and told them I'd ruptured my eardrum. " And how would you know that? " the doctor said, with the obvious implication of " I'm the one who went to med school. " " Well, a guy twice my size ridgehanded me in the ear, it popped, and now I can't hear and can blow air out of that ear. " He looked and said he didn't see anything wrong. It took two more visits and a near hissy-fit before they referred me to an ENT, still saying they didn't see anything wrong. When I went to the ENT, he took one look and said, " Yeah, you've got a big hole there. "

People not wanting to " have to deal with " my illness is very frustrating and disheartening. So far in my first year of college I never had a syncope episode in class, but there's always the possibility--and there's things that, because of the nature of my disorder, they should and should not do. I schedule a meeting with each of my professors at the beginning of the semester, and I give them a brief printout of AVM and on vertigo, and another printout from my doctor of how to handle a syncope episode. One professor, when I started talking, said, " I don't have time to listen to your excuses on why you can't do the work. You're not special, and you have to pass this class just like everyone else. " I left in tears--I wasn't even asking for an accommodation; I just wanted her to not kill me in the event I had an episode during her class. Another one said, under the guise of being helpful, " Are you sure you should even be away from home? " Hello, I'm an adult! You would never say that to someone in a wheelchair, as that would be terribly un-PC. Well, I'm disabled too; it's just not obvious!

That being said, I've also had some terrific profs too. I had one who even sent me flowers after my surgery. Another professor whose class I didn't even have that semester ran into me on campus during a vertigo spell, when I was hanging onto a streetlight pole for dear life and trying to get to a class on time. She called the university escort system, but when they told her they only operate at night, she got her car and took me to my class herself. If I could clone that woman, it'd be wonderful!

I also have some really good supportive friends. I've had a few drop away when they got to know me better and found out about my illness, but the ones who've stuck around are gold. That helps a lot, having someone to call and rant to when other people are being jerks about it. But I wanted to find some people who understand the experience too, which is why I joined this group. I've been feeling pretty depressed over this latest severe vertigo episode, as it's really hard for me to function and people don't get it because I " look fine. "

SaraOn 8/3/07, gettingthere35 <gettingthere35@...> wrote:

Hi Sara!

I was too tired to answer when I read your letter, but better now after good sleep and some chiropractic.

I can't imagine how you could be so strong to be at college with all you are going through! You are amazing!

And I can't imagine how the doctors and all could be SO blind/etc...

well, yes, actually I can....

it's so very very hard to find medical folks who are willing to take the time to learn who you are and what you know, and what your 'case' is...

and then hopefully to know you best as a PERSON!!!

I am also depressed that your profs et al don't really want to have to deal with 'what to do' in case you might be in major trouble -- I can understand that they might be frightened at the prospect, but...

and goodness having severe vertigo on top of it -- it used to knock out my very strong mother periodically, and hers was relatively 'mild'

I " m lucky that I look awful when I don't feel good - and I don't try to hide how I feel

Wow again and best of luck as you fight your way through this morass -- can you get a helper of some sort -- peer support -- or a 'townie'?

Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Dear Sara, What a trooper you are young lady!!! Bravo!!!! You seem to be the type of person who grabs life by the horns and goes on this tumultuous ride everyday. I do not post often but had to write and tip my hat to you and to all the people who are struggling every day of their lives in this group bravo to you all.....I am a retired Nurse and I know only to well the "God complex syndrome" the one thing I had a professor ask me when I was in nursing { back during the time of Methuselah } what do you call a someone who finishes medical school in the bottom of his class? ans: doctor....there are very good docs as well as very bad ones....as with anyone in the medical field.....the best advise I would give anyone is ask questions......

Sara <browncoatrebel.al@...> wrote: Hi nice to meet you.I've not had good experiences with the medical profession, in general. I do have a wonderful GP, but there's only so much he can do, you know? I hate being stuck using our local university hospital system. Granted, in terms of research and cutting-edge treatments, they're wonderful...but I'm a person, too, and IMO that's too easily forgotten in medicine. I'm more than a bunch of anatomical

parts, and I'm more than a disease (or three). Because I'm young, too, a lot of doctors assume that I'm stupid or can't understand them if they give me technical explanations. Yes, I'm young, and yes, I'm an English and Chinese major. But I'm also intelligent and an obsessive researcher. When my AVM was diagnosed, the neurologist just said, "We found something in your brain scans," handed me a sheet of paper, and left. "So they found out I do have a brain," I said. The paper he gave me was all in doctor talk, but I spent hours online researching until I understood and could "talk shop." By the time I saw the neurosurgeon, I knew the drill. I started out talking to him using technical medical terms and told him what treatment I thought was best for me--which, consequently, was the same thing he'd already decided to recommend. A lot of doctors really hate it when you do that, though. There's definitely a God

complex going on with a lot of them. I ruptured an eardrum last year right before a karate tournament, so I went to student health at my university and told them I'd ruptured my eardrum. "And how would you know that?" the doctor said, with the obvious implication of "I'm the one who went to med school." "Well, a guy twice my size ridgehanded me in the ear, it popped, and now I can't hear and can blow air out of that ear." He looked and said he didn't see anything wrong. It took two more visits and a near hissy-fit before they referred me to an ENT, still saying they didn't see anything wrong. When I went to the ENT, he took one look and said, "Yeah, you've got a big hole there." People not wanting to "have to deal with" my illness is very frustrating and disheartening. So far in my first year of college I never had a syncope episode in class, but there's always the possibility--and there's things that, because of the

nature of my disorder, they should and should not do. I schedule a meeting with each of my professors at the beginning of the semester, and I give them a brief printout of AVM and on vertigo, and another printout from my doctor of how to handle a syncope episode. One professor, when I started talking, said, "I don't have time to listen to your excuses on why you can't do the work. You're not special, and you have to pass this class just like everyone else." I left in tears--I wasn't even asking for an accommodation; I just wanted her to not kill me in the event I had an episode during her class. Another one said, under the guise of being helpful, "Are you sure you should even be away from home?" Hello, I'm an adult! You would never say that to someone in a wheelchair, as that would be terribly un-PC. Well, I'm disabled too; it's just not obvious! That being said, I've also had some terrific profs too. I had one

who even sent me flowers after my surgery. Another professor whose class I didn't even have that semester ran into me on campus during a vertigo spell, when I was hanging onto a streetlight pole for dear life and trying to get to a class on time. She called the university escort system, but when they told her they only operate at night, she got her car and took me to my class herself. If I could clone that woman, it'd be wonderful! I also have some really good supportive friends. I've had a few drop away when they got to know me better and found out about my illness, but the ones who've stuck around are gold. That helps a lot, having someone to call and rant to when other people are being jerks about it. But I wanted to find some people who understand the experience too, which is why I joined this group. I've been feeling pretty depressed over this latest severe vertigo episode, as it's really hard for me to function and

people don't get it because I "look fine." Sara On 8/3/07, gettingthere35 <gettingthere35verizon (DOT) net> wrote: Hi Sara! I was too tired to answer when I read your letter, but better now after good sleep and some chiropractic. I can't imagine how you could be so strong to be at college with all you are going through! You are amazing! And I can't imagine how the doctors and all could be SO

blind/etc... well, yes, actually I can.... it's so very very hard to find medical folks who are willing to take the time to learn who you are and what you know, and what your 'case' is... and then hopefully to know you best as a PERSON!!! I am also depressed that your profs et al don't really want to have to deal with 'what to do' in case you might be in major trouble -- I can understand that they might be frightened at the prospect, but... and goodness having severe vertigo on top of it -- it used to knock out my very strong mother periodically, and hers was relatively 'mild' I"m lucky that I look awful when I don't feel good -

and I don't try to hide how I feel Wow again and best of luck as you fight your way through this morass -- can you get a helper of some sort -- peer support -- or a 'townie'? New Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been

diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can

throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and

said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

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[Guest guest]

Hello again, Sara! Great to meet you too!!

I admit to some tears as I read your response.

HOW can some of those unfortunate folks consider themselves 'professional' when they will not even HEAR?? -- and they miss so much 'good stuff' by shutting themselves off in their internal world.

At least now you know from experience that you'll be facing 'some of those' as you continue your college work, so I 'spect that you'll have some excellent other ways of making yourself known!!

I'm so very glad that there have been at least SOME of the 'good guys' there for you.

And that some of the folks with whom you made friends turn out to be 'golden'.

I suspect that with your attitude as it is, you will be finding more of them! People are attracted to folks like you who live with such grace against such odds!

At least I hope that will be so.

I have been so very lucky in finding folks who 'get me through' to a next stage.

I become more and more aware of that fact, as I hear histories from such as you.

And yup, we need to keep reminding ourselves, even when 'they' see only the parts and the cases, that we are WHOLE PERSONS despite the number of diagnoses we may also carry. I wonder how many of 'them' would see if we had a supercilious smile when they refused to see more than the parts....

and how many would be educated if they asked and we told them a well-rehearsed response...

I also had to laugh a bit, and shake my head, when you described how that doc reacted when you described why you knew your diagnosis about your hearing was correct. I agree that a few respond well to an informed patient, but still SO many apparently feel that their years in medical school are being attacked when a patient is correct!

And yes, when folks are 'too helpful', as in suggesting you need more 'special care' than you choose to have, it makes my skin crawl. Same thing happens when you get to be a senior. I haven't quite figured how to handle that well. My friend and I were treated that way by a waitress a few days ago, and dissolved in laughter *at* her behaviour - but not until she had moved from the table. As she continued her treatment of us, I don't think she had a clue. When I have time, and when it hasn't taken away my underpinning, I can respond nicely with a "thanks so very much, you are generous and helpful -- but I have made the decision to do my best to live life to the fullest. If you really want to help me, you can do it by...." but that rarely gets remembered in time ;-(

Do they have different sections for your required classes? I am wondering if you could come back at such a prof -- 'then I'll have to take another section, because I am not willing to risk dying in class. You're not special either.' or some such...

btw do you look 'more ill' without make-up? that might help? (but at a cost I know...)

One of the women in the M.S. support group way back when, who was very unsteady on her feet and tired of folks' treatment of her, made up a shirt that said "I don't have M.S., I'm drunk." I couldn't make up my mind whether that worked or not.. but it sure would make one 'feel better' wearing it after experiencing a major put-down!

hope they find a help for that vertigo soon!!

(btw, have you tried the 'energy medical modalities' like homeopathy and acupuncture?? Sometimes they can do quite amazing things in helping your body reset itself. even if not 'cure', though SOMEtimes they also cure...)

I have some major cognitive concerns, so sorry if you already said...

Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Thanks, Joyce.I wish I was given the opportunity to ask question! But in the ER the doctors hardly saw you at all, and the specialists can't be bothered. I like my GP, but he doesn't have the expertise on my specific disorder--nor should he; that's a neurologist's job.

SaraOn 8/4/07, Joyce s <vamom52@...> wrote:

Dear Sara, What a trooper you are young lady!!! Bravo!!!! You seem to be the type of person who grabs life by the horns and goes on this tumultuous ride everyday. I do not post often but had to write and tip my hat to you and to all the people who are struggling every day of their lives in this group bravo to you all.....I am a retired Nurse and I know only to well the " God complex syndrome " the one thing I had a professor ask me when I was in nursing { back during the time of Methuselah } what do you call a someone who finishes medical school in the bottom of his class? ans: doctor....there are very good docs as well as very bad ones....as with anyone in the medical field.....the best advise I would give anyone is ask questions......

Sara <browncoatrebel.al@...> wrote: Hi nice to meet you.I've not had good experiences with the medical profession, in general. I do have a wonderful GP, but there's only so much he can do, you know? I hate being stuck using our local university hospital system. Granted, in terms of research and cutting-edge treatments, they're wonderful...but I'm a person, too, and IMO that's too easily forgotten in medicine. I'm more than a bunch of anatomical

parts, and I'm more than a disease (or three). Because I'm young, too, a lot of doctors assume that I'm stupid or can't understand them if they give me technical explanations. Yes, I'm young, and yes, I'm an English and Chinese major. But I'm also intelligent and an obsessive researcher. When my AVM was diagnosed, the neurologist just said, " We found something in your brain scans, " handed me a sheet of paper, and left. " So they found out I do have a brain, " I said. The paper he gave me was all in doctor talk, but I spent hours online researching until I understood and could " talk shop. " By the time I saw the neurosurgeon, I knew the drill. I started out talking to him using technical medical terms and told him what treatment I thought was best for me--which, consequently, was the same thing he'd already decided to recommend. A lot of doctors really hate it when you do that, though. There's definitely a God

complex going on with a lot of them. I ruptured an eardrum last year right before a karate tournament, so I went to student health at my university and told them I'd ruptured my eardrum. " And how would you know that? " the doctor said, with the obvious implication of " I'm the one who went to med school. " " Well, a guy twice my size ridgehanded me in the ear, it popped, and now I can't hear and can blow air out of that ear. " He looked and said he didn't see anything wrong. It took two more visits and a near hissy-fit before they referred me to an ENT, still saying they didn't see anything wrong. When I went to the ENT, he took one look and said, " Yeah, you've got a big hole there. " People not wanting to " have to deal with " my illness is very frustrating and disheartening. So far in my first year of college I never had a syncope episode in class, but there's always the possibility--and there's things that, because of the

nature of my disorder, they should and should not do. I schedule a meeting with each of my professors at the beginning of the semester, and I give them a brief printout of AVM and on vertigo, and another printout from my doctor of how to handle a syncope episode. One professor, when I started talking, said, " I don't have time to listen to your excuses on why you can't do the work. You're not special, and you have to pass this class just like everyone else. " I left in tears--I wasn't even asking for an accommodation; I just wanted her to not kill me in the event I had an episode during her class. Another one said, under the guise of being helpful, " Are you sure you should even be away from home? " Hello, I'm an adult! You would never say that to someone in a wheelchair, as that would be terribly un-PC. Well, I'm disabled too; it's just not obvious! That being said, I've also had some terrific profs too. I had one

who even sent me flowers after my surgery. Another professor whose class I didn't even have that semester ran into me on campus during a vertigo spell, when I was hanging onto a streetlight pole for dear life and trying to get to a class on time. She called the university escort system, but when they told her they only operate at night, she got her car and took me to my class herself. If I could clone that woman, it'd be wonderful! I also have some really good supportive friends. I've had a few drop away when they got to know me better and found out about my illness, but the ones who've stuck around are gold. That helps a lot, having someone to call and rant to when other people are being jerks about it. But I wanted to find some people who understand the experience too, which is why I joined this group. I've been feeling pretty depressed over this latest severe vertigo episode, as it's really hard for me to function and

people don't get it because I " look fine. " Sara On 8/3/07, gettingthere35 <

gettingthere35@...> wrote: Hi Sara! I was too tired to answer when I read your letter, but better now after good sleep and some chiropractic.

I can't imagine how you could be so strong to be at college with all you are going through! You are amazing!

And I can't imagine how the doctors and all could be SO

blind/etc... well, yes, actually I can.... it's so very very hard to find medical folks who are willing to take the time to learn who you are and what you know, and what your 'case' is...

and then hopefully to know you best as a PERSON!!! I am also depressed that your profs et al don't really want to have to deal with 'what to do' in case you might be in major trouble -- I can understand that they might be frightened at the prospect, but...

and goodness having severe vertigo on top of it -- it used to knock out my very strong mother periodically, and hers was relatively 'mild'

I " m lucky that I look awful when I don't feel good -

and I don't try to hide how I feel Wow again and best of luck as you fight your way through this morass -- can you get a helper of some sort -- peer support -- or a 'townie'?

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been

diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can

throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and

said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

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[Guest guest]

Hi Sara, I hear your frustration, I am 46 dependent of retired

military, I have military medical. We pay $460 a year, and we may be

getting what we pay for.

I have Behcets, and other things, but lately back ache, and carpal

tunnel. My civilian/ outside of milt hosp rheumy, has been seeing me

for behcets, no real changes, but its he who referred me out to check

my hands and found classic carpal tunnel. I have been suffering from

my hands for about 3 yrs, they kept giving me nsaids.

Now does the military refer me to get surgery, or the civilian

rheumy?? THey 'both' say THEY DO. I am hoping to get referred

outside, so maybe the outside DRs can do a more progressive up to

date surgery. There are newer ways to cut the incision, but the

military hospital may not do that type.

My first time going to counselors, psychologists, was on dealing w/

drs, and being assertive. Then I uncovered a bunch of other stuff I

needed to take care of.

Best wishes for you to find the solutions you are seeking.

Aloha, Laurie H. / WA

[Guest guest]

Well, yanno, I've always been tempted, when dealing with jerks, to " make myself known " by pulling out a set of nunchaku and whacking them a couple times, but I hear that sort of thing is frowned upon in polite society. ;-)

You're right, though, we do attract the same sort of energy that we put out. (Ever read or seen The Secret?) I keep telling myself that if I can put positive, nurturing, healing energy into the world, I'll get back the same thing. It'll take time, though, and the interim is VERY frustrating. But patience and persistence will prevail.

Seeing myself as a whole person has been essential to me. Our modern life is so fragmented that it's easy to lose sight of ourselves, and a self is the most tragic thing to lose. And, it seems to me, the people who have most lost touch with their true selves are the ones who treat others as less than whole. There is a musician I love named Shaina Noll, and she has a CD out called " Songs for the Inner Child. " One of my favorite lyrics from that CD says, " How could anyone ever tell you you were anything less than beautiful? How could anyone ever tell you you were less than whole? How could anyone fail to notice that your loving is a miracle? How deeply you're connected to my soul. " I really love that song--it rings very true for me.

Yup, docs don't like when the patient tells them what's wrong. I've gotten " Yes, and which med school did *you* graduate from? " before from a doc--and that was just when I was telling him another doc's diagnosis! I mean, certainly, I can understand why you would want to verify a patient's self-diagnosis, as it would be negligent not to. But to doubt them? They're the ones living in their bodies, not the docs.

It's been my experience that, most of the time, the " overly helpful " folks are just concerned and don't understand--most of them truly have good intentions. They do tend to respond well to " I appreciate the offer, but what would actually help me most is [xyz]. " What really gets under my skin are the ones who disguise their condescension as helpfulness, which is what I sensed from the prof who asked if I should even be in college.

I've never changed sections for a class because of a prof. I'm in three honors programs and have an unusual minor (Chinese), and often there's only a single section offered for classes I need. I also work--putting myself through college--so that makes scheduling a nightmare. If there's ever a huge problem, I'm served by the Student Disability Services office, though they're as bureaucratic as the rest of the college, albeit a bit more helpful.

Hee hee, I don't wear make-up, never have. My attitude is, " This is my face. If you don't like it, look at somebody else's. " My disorders don't cause any visual symptoms...which is in many ways a blessing but in some ways a curse as well. I'm sure you can understand.

I've thought about wearing a sign at work that says " Stroke Survivor " so people will stop looking at me like I'm drunk, but I don't think my managers would approve. That's definitely not part of our uniform. But I'm a big fan of T-shirts like that. I had a prof for my intro to criminal justice class my first semester who said every white person in the state was a racist. I promptly made a shirt that said " I'm not racist unless stupid is a race, " and since I sat on the front row, she couldn't help but notice. When we had a hate preacher on our campus, I made a shirt that said " Get out of my religion. " (You can see it here on my blog, if you're interested.)I am a big fan of alternative medicine, but it's hard to find any resources where I live in Alabama. Also, I'm putting myself through college (both parents refuse to help), so money is scarce, and my crappy insurance doesn't cover alternative treatments. I'm currently looking into craniosacral therapy, as several people have recommended it to me. It's just a question of whether I can afford it.

Don't worry about memory problems--mine sucks too! I totally understand how that goes. Now where did I put that pen? :-)SaraOn 8/4/07,

gettingthere35 <gettingthere35@...> wrote:

Hello again, Sara! Great to meet you too!!

I admit to some tears as I read your response.

HOW can some of those unfortunate folks consider themselves 'professional' when they will not even HEAR?? -- and they miss so much 'good stuff' by shutting themselves off in their internal world.

At least now you know from experience that you'll be facing 'some of those' as you continue your college work, so I 'spect that you'll have some excellent other ways of making yourself known!!

I'm so very glad that there have been at least SOME of the 'good guys' there for you.

And that some of the folks with whom you made friends turn out to be 'golden'.

I suspect that with your attitude as it is, you will be finding more of them! People are attracted to folks like you who live with such grace against such odds!

At least I hope that will be so.

I have been so very lucky in finding folks who 'get me through' to a next stage.

I become more and more aware of that fact, as I hear histories from such as you.

And yup, we need to keep reminding ourselves, even when 'they' see only the parts and the cases, that we are WHOLE PERSONS despite the number of diagnoses we may also carry. I wonder how many of 'them' would see if we had a supercilious smile when they refused to see more than the parts....

and how many would be educated if they asked and we told them a well-rehearsed response...

I also had to laugh a bit, and shake my head, when you described how that doc reacted when you described why you knew your diagnosis about your hearing was correct. I agree that a few respond well to an informed patient, but still SO many apparently feel that their years in medical school are being attacked when a patient is correct!

And yes, when folks are 'too helpful', as in suggesting you need more 'special care' than you choose to have, it makes my skin crawl. Same thing happens when you get to be a senior. I haven't quite figured how to handle that well. My friend and I were treated that way by a waitress a few days ago, and dissolved in laughter *at* her behaviour - but not until she had moved from the table. As she continued her treatment of us, I don't think she had a clue. When I have time, and when it hasn't taken away my underpinning, I can respond nicely with a " thanks so very much, you are generous and helpful -- but I have made the decision to do my best to live life to the fullest. If you really want to help me, you can do it by.... " but that rarely gets remembered in time ;-(

Do they have different sections for your required classes? I am wondering if you could come back at such a prof -- 'then I'll have to take another section, because I am not willing to risk dying in class. You're not special either.' or some such...

btw do you look 'more ill' without make-up? that might help? (but at a cost I know...)

One of the women in the M.S. support group way back when, who was very unsteady on her feet and tired of folks' treatment of her, made up a shirt that said " I don't have M.S., I'm drunk. " I couldn't make up my mind whether that worked or not.. but it sure would make one 'feel better' wearing it after experiencing a major put-down!

hope they find a help for that vertigo soon!!

(btw, have you tried the 'energy medical modalities' like homeopathy and acupuncture?? Sometimes they can do quite amazing things in helping your body reset itself. even if not 'cure', though SOMEtimes they also cure...)

I have some major cognitive concerns, so sorry if you already said...

Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Hi again

Ah you are WAY WAY ahead of me!! I had thought you were just starting! Wow that you are handling honors classes!! PLUS working?? amazing!

glad that the student disability office can be a bit helpful at least, when needed...

actually I've NOT found that we necessarily get back what we put out...

My Dad was a preacher, and I learned from him (luckily for me) that it's not a good idea to figure you'll get back what you give -- in fact oftentimes it is just the opposite (at least in THIS lifetime) -- so I early learned to give only what I can afford to lose....

although I sometimes feel bad at being 'selfish'

If I don't, I get ill, and then I am more needy too....

sounds like a beautiful song

A long while ago, I bumped into a book by Janette Rainwater on how to be your own therapist (assuming I was going to need to do that, at a time when no one seemed able to help) -- anyway I found in her book an 'disidentification exercise' which more or less says I am ME not what is wrong with me! and I am whole

That fit in nicely with my growing realization of living in both time and eternity -- for in eternity I'd be whole....

(btw my friends run the full range from 'pagan' to 'born again' to atheist to most of the 'regular' faiths or absence thereof, so not a concern for me)

I did also have one doc ask me which medical school....

hmm can't remember who musta been one of the ones I didn't go back to.... ;-)

yup for some, condescension is there for sure.

I hate to admit that in my early days I'd have done that -- shudder!!

I don't wear make-up hardly at all either -- but I have a couple of ill friends who try to cover their illness with make-up, and do so fairly well -- and then they don't get the support

sorry to hear that there aren't that many 'alternative' providers down where you are -- and yup, it sure does take extra $$!!

one of the good things for me with disability has been the SSDI check, and the Section 8 rental subsidy -- which allows me to buy some

(Did I tell you that I 'got well' on reaching 65? so that I went off SSDI?

Well, not really -- I graduated to 'regular SS'

Maybe not the funniest joke, but when you've been on SSDI for more than 30 yrs..

I do have craniosacral work done by my osteopath sometimes (osteopathic medicine IS covered by regular insurance, if you can find one...)

but I don't think it helps me nearly as much as either the homeopathy or the acupuncture....

I had symptoms appearing late in college, and despite lots of treatments, not until I was treated with isopathy (sort of related to homeopathy), did I begin to emerge

Now little by little with mind/body psychotherapy, acupunture, chiropractic, osteopathy. supplements, and homeopathy, I'm very gradually getting stronger (I hope) -- but aging stuff is making nudges especially since I'm stupidly not taking the supplements (WHY!) or drinking enough or eating right

quite a different sounding set of Sx I suspect

some neuropsyc thought I had alzheimer's but my shrink says not.....

more than 'nuf for now -- will check out your blog

(right that you have memory concerns, learning Chinese, AND doing a blog with everything else -- I've only once even looked at a blog before.... ;-)

and don't really comprehend what they are...

'nite for now! Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Nope, I'm not just starting by any means; been dealing with the AVM since I was 18--at least that was when it was diagnosed, but it's a congenital defect, and I'd been living with symptoms all my life. But I have a handful of psychiatric issues to boot, so I kept being told I was " just depressed/anxious/dx du jour. " When I started passing out, I got told that I was pregnant, on drugs, and/or attempting suicide. I'm sure the docs felt like jerks when they found out there was something physically wrong!

Yes, finally coming to believe that I am not my illnesses was very freeing for me. There's nothing wrong with ME; I just have some things that could use some improvement, and my body's pretty messed up.

(I have friends from many different religions too. One best friend is Wiccan, one's Episcopalian, and one's Buddhist. I have another close friend who's a Celtic pagan and another who's Muslim. Personally, I identify as a Unitarian-Universalist/Baha'i, though I lean toward Christian practice just because that's what I was raised with and am familiar with it. I find a lot of the underlying principles of religion are the same.)

I have to admit that the idea of acupuncture freaks me out--not sure I'd want to try it. But I'm pretty desperate at this point. I managed to dig up the names and numbers for three people in my metro area who do craniosacral, and I'm going to call and see what their prices are. I guess I'll just have to see how that goes.

I do okay with memory when I'm able to document stuff, so blogging actually helps sometimes. Also, I'm a very opinionated person and sometimes need a place to just blow off steam, and I use my blog for that as well. As for Chinese, well, there's a lot of hard studying involved, and speaking frequently with my language partner. I don't have much problem with informational memory (dates, facts, names); it's episodic (event) memories I have trouble with. Basically, I can remember stuff I've learned mostly, but I don't remember learning it. The brain's odd like that. :-)

Hope you're having a good evening.SaraOn 8/4/07, gettingthere35 <gettingthere35@...

> wrote:

Hi again

Ah you are WAY WAY ahead of me!! I had thought you were just starting! Wow that you are handling honors classes!! PLUS working?? amazing!

glad that the student disability office can be a bit helpful at least, when needed...

actually I've NOT found that we necessarily get back what we put out...

My Dad was a preacher, and I learned from him (luckily for me) that it's not a good idea to figure you'll get back what you give -- in fact oftentimes it is just the opposite (at least in THIS lifetime) -- so I early learned to give only what I can afford to lose....

although I sometimes feel bad at being 'selfish'

If I don't, I get ill, and then I am more needy too....

sounds like a beautiful song

A long while ago, I bumped into a book by Janette Rainwater on how to be your own therapist (assuming I was going to need to do that, at a time when no one seemed able to help) -- anyway I found in her book an 'disidentification exercise' which more or less says I am ME not what is wrong with me! and I am whole

That fit in nicely with my growing realization of living in both time and eternity -- for in eternity I'd be whole....

(btw my friends run the full range from 'pagan' to 'born again' to atheist to most of the 'regular' faiths or absence thereof, so not a concern for me)

I did also have one doc ask me which medical school....

hmm can't remember who musta been one of the ones I didn't go back to.... ;-)

yup for some, condescension is there for sure.

I hate to admit that in my early days I'd have done that -- shudder!!

I don't wear make-up hardly at all either -- but I have a couple of ill friends who try to cover their illness with make-up, and do so fairly well -- and then they don't get the support

sorry to hear that there aren't that many 'alternative' providers down where you are -- and yup, it sure does take extra $$!!

one of the good things for me with disability has been the SSDI check, and the Section 8 rental subsidy -- which allows me to buy some

(Did I tell you that I 'got well' on reaching 65? so that I went off SSDI?

Well, not really -- I graduated to 'regular SS'

Maybe not the funniest joke, but when you've been on SSDI for more than 30 yrs..

I do have craniosacral work done by my osteopath sometimes (osteopathic medicine IS covered by regular insurance, if you can find one...)

but I don't think it helps me nearly as much as either the homeopathy or the acupuncture....

I had symptoms appearing late in college, and despite lots of treatments, not until I was treated with isopathy (sort of related to homeopathy), did I begin to emerge

Now little by little with mind/body psychotherapy, acupunture, chiropractic, osteopathy. supplements, and homeopathy, I'm very gradually getting stronger (I hope) -- but aging stuff is making nudges especially since I'm stupidly not taking the supplements (WHY!) or drinking enough or eating right

quite a different sounding set of Sx I suspect

some neuropsyc thought I had alzheimer's but my shrink says not.....

more than 'nuf for now -- will check out your blog

(right that you have memory concerns, learning Chinese, AND doing a blog with everything else -- I've only once even looked at a blog before.... ;-)

and don't really comprehend what they are...

'nite for now! Jean

New

Hi, I'm Sara, and I'm new here.I'm a 21-year-old college student. I have a brain AVM (arteriovenous malformation) and had my first stroke when I was 19. (Stroke risk is between 25% and 35% every 10 years with an AVM.) I also suffer from transient but disabling vertigo that hasn't been diagnosed yet. I've been having a bad attack the last two days. Spent 13 hours in the ER Tuesday night/Wednesday morning afraid I was stroking again--that's how the other one started, with the horrible vertigo. They eliminated the AVM as the cause and are now saying it's probably an ear problem, since I also have a significant history of ear problems. (Five ear surgeries before I started kindergarten, and my left eardrum is currently patched because I perforated it in a karate accident back last October.) I've become more and more frustrated with people because they don't think I'm sick since I look normal. They don't understand having to constantly be alert for the signs of stroke at age 21. They don't understand having to give all your professors a printout at the beginning of the semester telling them what to do if I pass out and stop breathing. They don't understand that during my vertigo attacks, turning my head can throw me off for five to ten minutes. And I'm running into some of the same with the doctors. Part of the problem is that I'm ensnared in a university hospital system that is revoltingly bureaucratic and treats patients like they're nothing--but they're the only place around that can deal with my AVM. But I feel like the treatment I've gotten is unacceptable, especially after this last round in the ER. When they discharged me, the neurologist who'd evaluated my CT's never even came to talk to me, and the only part of his notes the nurse could decipher was instructions for see my neurosurgeon that day. (So I'm panicked and thinking it's something bad, though at least not a bleed.) I called the neurosurgeon's office, but they don't even have humans to answer the phone. It took three hours for them to call me back, and when I told the nurse that the ER on-call neurologist said I should see my surgeon ASAP, she made a big huff and said they could fit me in at the end of September. I told her she was not comprehending the situation and ended up crying about how I could hardly walk. Secretary transferred me to the neurosurgeon's nurse, who told me I didn't stroke (first time anyone had actually TOLD me this) and that I should see an ENT. She said there was a specialist they wanted me to see, and she'd schedule an appointment and call me back. She didn't. Nor did she call me back today, despite my leaving several messages. I'm thinking I'm just going to call my regular ENT (not in the university hospital system from hades) and schedule an appointment. If he needs to refer me to someone, his office will actually do it. So, that's me. Sorry for the long-ish rant.Sara

[Guest guest]

Thanks for the welcome and understanding, Laurie.I think doctors would be much more sympathetic if we could somehow make them experience our lives for a week. Seriously, I think most of them just have NO CLUE, and it's inexcusable, IMO.

SaraOn 8/4/07, Laurie H <Mana_olana@...> wrote:

Hi Sara, I hear your frustration, I am 46 dependent of retired

military, I have military medical. We pay $460 a year, and we may be

getting what we pay for.

I have Behcets, and other things, but lately back ache, and carpal

tunnel. My civilian/ outside of milt hosp rheumy, has been seeing me

for behcets, no real changes, but its he who referred me out to check

my hands and found classic carpal tunnel. I have been suffering from

my hands for about 3 yrs, they kept giving me nsaids.

Now does the military refer me to get surgery, or the civilian

rheumy?? THey 'both' say THEY DO. I am hoping to get referred

outside, so maybe the outside DRs can do a more progressive up to

date surgery. There are newer ways to cut the incision, but the

military hospital may not do that type.

My first time going to counselors, psychologists, was on dealing w/

drs, and being assertive. Then I uncovered a bunch of other stuff I

needed to take care of.

Best wishes for you to find the solutions you are seeking.

Aloha, Laurie H. / WA

[Guest guest]

Welcome....

Sounds very much like OCD...and no 9 is not to young - my daughter is

6 and has been diagnosed with OCD and anxiety.

Hopefully you can find a good therapist to work with your daughter,

and this group is wonderful.

(((HUGS)))

Jenni

[Guest guest]

No, 9 is not too young to be diagnosed. I have OCD, and was pretty bad at age

9.

Don't feel bad about missing it in your daughter. I didn't realize how bad

hers was until she was almost 12. (a year ago).

She and I both have fears that we may harm ourselves or others, and therefore

avoid " scary " things. My daughter's fears are of knives. Mine (don't laugh!)

are of coffee cups.

Last year, my daughter reported that she'd been having fears of hurting

herself since she was 7! All I could see on the outside was her little quirks.

Until last year, she was just diagnosed with ADHD.

My daughter went through a bunch of psych testing to get diagnosed with ADHD,

but her OCD was diagnosed based on symptoms.

Sorry you have to be here, but nice to meet you!

Laurie

poetry4me75@... wrote:

Hi. I am Lori from Indiana, USA. I have a 9 year old daughter with (I am

pretty sure) OCD. Her initial eval is today after school. She has been having

trouble at school for quite some time and it took me a couple years to

recognize the OCD issues. I don't know why, I have OCD, too. It is mild. I took

medications awhile but I have bad reactions to all SSRI's so I deal with my

problems without meds. I have also dealt with depression, but no longer suffer

from

that. I have learned how to live with my OCD and it is just part of who I

am. It is a daily struggle I am used to I guess.

My daughter, however, seems to have it worse. I don't know if 9 is young to

be diagnosed with it or not. I am not even sure that will be her diagnosis

but if it is not OCD I do not know what it is. She has episodes at school where

she loses control and " shuts down " and these problems have prompted many a

meeting and phone call with the principal/teacher/counselor, etc. I guess I

thought she would grow out of it and I somehow ignored some obvious signs, like

her compulsive cleaning, changing clothes several times a day, preoccupation

with being clean and flossing her teeth (she is not a hand washer) and her

clothes cannot have ANY spots on them. The part in her hair has to be

perfectly straight. How she organizes and if I try to help I can never " do it

right " .

At school is a whole other set of ideals for her. Her handwriting is very

neat and precise, has to be perfect or she just starts over with a NEW piece of

paper (erasing is not acceptable, makes it bad). She will do a problem over

and over trying to get it perfect, we go through tons of paper. We just

labeled her a perfectionist for the longest time while I tried to get her to be

reasonable and accept less than perfect as OK. Her standards are rather

unrealistic and are what prompts the episodes at school. UGH I should have seen

it

long ago. The good thing is, I know how her mind thinks since I have it, too,

and hopefully we can get through this together. I will let you know what the

Dr says. What can I expect? Will there be more than one appointment required

to make a diagnosis and formulate a treatment plan? Well, nice to " meet " you

all.

~~Lori

Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to

God.

************************************** See what's new at http://www.aol.com

[Guest guest]

Welcome, Lori. I'm in CA. You sound just like me...I

have OCD, mild...unmedicated. I feel it is just me,

my personality. My friends and coworkers seem to

accept me as I am. I deal with it everyday, but I

think I am fine. When things are stressful, it flares

up badly....I just find something I can grab and

control to feel " right " again. I, too, did not do

well on SSRIs...they mentioned meds for mood

disorders...but, again, I am just me.

My daughter is almost 8, and I always saw mild OCD in

her, too...since she was two years old (through her

play). However, things are getting bad for her, worse

than it was for me at her age. I don't think I got to

her point until 13 or so. Thankfully, she has pretty

much control at school...but, at home, nighttime,

weekends, are a whole 'nother story. I need to get

her evaluated and such...before it does affect her

school! I am just having a hard time deciding who to

take her to for evaluation! We have seen three

therapists...and I was not happy with any of them....I

need to take her to a more specialized person, I think

(she has developed Trichotillomania recently).

Good luck!

--- poetry4me75@... wrote:

> Hi. I am Lori from Indiana, USA. I have a 9 year old

> daughter with (I am

> pretty sure) OCD. Her initial eval is today after

> school. She has been having

> trouble at school for quite some time and it took me

> a couple years to

> recognize the OCD issues. I don't know why, I have

> OCD, too. It is mild. I took

> medications awhile but I have bad reactions to all

> SSRI's so I deal with my

> problems without meds. I have also dealt with

> depression, but no longer suffer from

> that. I have learned how to live with my OCD and it

> is just part of who I

> am. It is a daily struggle I am used to I guess.

>

> My daughter, however, seems to have it worse. I

> don't know if 9 is young to

> be diagnosed with it or not. I am not even sure that

> will be her diagnosis

> but if it is not OCD I do not know what it is. She

> has episodes at school where

> she loses control and " shuts down " and these

> problems have prompted many a

> meeting and phone call with the

> principal/teacher/counselor, etc. I guess I

> thought she would grow out of it and I somehow

> ignored some obvious signs, like

> her compulsive cleaning, changing clothes several

> times a day, preoccupation

> with being clean and flossing her teeth (she is not

> a hand washer) and her

> clothes cannot have ANY spots on them. The part in

> her hair has to be

> perfectly straight. How she organizes and if I try

> to help I can never " do it right " .

> At school is a whole other set of ideals for her.

> Her handwriting is very

> neat and precise, has to be perfect or she just

> starts over with a NEW piece of

> paper (erasing is not acceptable, makes it bad). She

> will do a problem over

> and over trying to get it perfect, we go through

> tons of paper. We just

> labeled her a perfectionist for the longest time

> while I tried to get her to be

> reasonable and accept less than perfect as OK. Her

> standards are rather

> unrealistic and are what prompts the episodes at

> school. UGH I should have seen it

> long ago. The good thing is, I know how her mind

> thinks since I have it, too,

> and hopefully we can get through this together. I

> will let you know what the

> Dr says. What can I expect? Will there be more than

> one appointment required

> to make a diagnosis and formulate a treatment plan?

> Well, nice to " meet " you

> all.

>

> ~~Lori

>

> Live simply. Love generously. Care deeply. Speak

> kindly. Leave the rest to

> God.

>

>

>

>

> ************************************** See what's

> new at http://www.aol.com

>

>

> [Non-text portions of this message have been

> removed]

>

>

________________________________________________________________________________\

____

Got a little couch potato?

Check out fun summer activities for kids.

http://search./search?fr=oni_on_mail & p=summer+activities+for+kids & cs=bz

[Guest guest]

So, with harming myself....it happens when I am

driving. If I am on an overpass/bridge...I think of

driving off of it. I would never do it, but it is a

fleeting thought everytime I am on one...or a curve

that has a steep edge. And, only when I am alone,

never with my daughters in my car. I don't have a

fear of hurting others. I don't know if DD has

that....haven't asked her. I do know she tells me she

wishes she was dead....which upsets me.

--- wallflower <wallflower67@...> wrote:

> No, 9 is not too young to be diagnosed. I have OCD,

> and was pretty bad at age 9.

>

> Don't feel bad about missing it in your daughter.

> I didn't realize how bad hers was until she was

> almost 12. (a year ago).

>

> She and I both have fears that we may harm

> ourselves or others, and therefore avoid " scary "

> things. My daughter's fears are of knives. Mine

> (don't laugh!) are of coffee cups.

>

> Last year, my daughter reported that she'd been

> having fears of hurting herself since she was 7!

> All I could see on the outside was her little

> quirks. Until last year, she was just diagnosed

> with ADHD.

>

> My daughter went through a bunch of psych testing

> to get diagnosed with ADHD, but her OCD was

> diagnosed based on symptoms.

>

> Sorry you have to be here, but nice to meet you!

>

> Laurie

>

> poetry4me75@... wrote:

> Hi. I am Lori from Indiana, USA. I have a 9 year

> old daughter with (I am

> pretty sure) OCD. Her initial eval is today after

> school. She has been having

> trouble at school for quite some time and it took me

> a couple years to

> recognize the OCD issues. I don't know why, I have

> OCD, too. It is mild. I took

> medications awhile but I have bad reactions to all

> SSRI's so I deal with my

> problems without meds. I have also dealt with

> depression, but no longer suffer from

> that. I have learned how to live with my OCD and it

> is just part of who I

> am. It is a daily struggle I am used to I guess.

>

> My daughter, however, seems to have it worse. I

> don't know if 9 is young to

> be diagnosed with it or not. I am not even sure that

> will be her diagnosis

> but if it is not OCD I do not know what it is. She

> has episodes at school where

> she loses control and " shuts down " and these

> problems have prompted many a

> meeting and phone call with the

> principal/teacher/counselor, etc. I guess I

> thought she would grow out of it and I somehow

> ignored some obvious signs, like

> her compulsive cleaning, changing clothes several

> times a day, preoccupation

> with being clean and flossing her teeth (she is not

> a hand washer) and her

> clothes cannot have ANY spots on them. The part in

> her hair has to be

> perfectly straight. How she organizes and if I try

> to help I can never " do it right " .

> At school is a whole other set of ideals for her.

> Her handwriting is very

> neat and precise, has to be perfect or she just

> starts over with a NEW piece of

> paper (erasing is not acceptable, makes it bad). She

> will do a problem over

> and over trying to get it perfect, we go through

> tons of paper. We just

> labeled her a perfectionist for the longest time

> while I tried to get her to be

> reasonable and accept less than perfect as OK. Her

> standards are rather

> unrealistic and are what prompts the episodes at

> school. UGH I should have seen it

> long ago. The good thing is, I know how her mind

> thinks since I have it, too,

> and hopefully we can get through this together. I

> will let you know what the

> Dr says. What can I expect? Will there be more than

> one appointment required

> to make a diagnosis and formulate a treatment plan?

> Well, nice to " meet " you

> all.

>

> ~~Lori

>

> Live simply. Love generously. Care deeply. Speak

> kindly. Leave the rest to

> God.

>

>

>

>

> ************************************** See what's

> new at http://www.aol.com

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

> Our list archives, bookmarks, files, and chat

> feature may be accessed at:

>

/

> .

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[Guest guest]

In a message dated 9/24/2007 7:51:42 P.M. Eastern Daylight Time,

@... writes:

Hi Lori! How did the appt go today?

Thanks everyone for their welcome. Well don't ya know they screwed up the

appointment. I took my daughter out of school 2 hours early, arrived half an

hour early to fill out papers and half way through the papers they tell me her

name is not on the appt list for the day. I have a tendency to screw up dates

or forget things so I start thinking " gosh, I am just SURE the appt was

today " and then they tell me it was...but at another office (an hour away) that

I

did not even know existed. I ask them...why would I call THIS office and

schedule an appt for THAT office? They were real nice and apologetic but I was

a

bit bummed she missed 2 hours of school and a 2 hour round trip (probably

$15 in gas) for this. They did admit it was THEIR mistake (made me feel better

just knowing it wasn't ME this time) so we know nothing more than we did.

I did, however, pick up the letter I asked the school to type up to give to

the Dr for the eval. OMGosh I had to choke back tears when I read it. To see

all the problems she has been having compiled in a list...it screams OCD.

Some I had never heard about before. Also, the school counselor called me today

and wanted me to know he had ordered a copy of " Talking Back to OCD " in case

the Dr wants to use it. I also picked up the paperwork (since I was there)

and filled it out at home and will take it with next time so we don't have to go

a half hour early. They would have rescheduled me then but I did not have my

calendar with me. So I am supposed to call tomorrow and get a new

appointment. <sigh>.

On the way to the appointment-that-never-happened, I told my DD that I have

been to the same kind of doctor for the same things and I thought I knew how

she felt. She was playing her Gameboy (an hour drive to get there) and she

says...so how do I feel? I used words like confused, frustrated, feel like no

one understands...and she agreed. I did not tell her about the appt until the

night before because she stresses out over things so much. Then when we found

out about the wrong location thing..she says...OH GREAT, what a wasted trip.

And I missed school for this! I just had to chuckle, because they were my

thoughts exactly!

I picked up a pamphlet on ADD/ADHD and ODD and they had a symptoms

checklist. She definitely does not have those. I have ADD with my mild OCD. I

am not

sure which I fight more and sometimes I cannot tell which is the causant (I

think I just invented that word?) of my issue. My oldest boy seemed to fit the

ADD thing, he was diagnosed NOT Add in 2nd grade...said he was borderline. He

has really grown out of it, or I should say, learned to deal with it.

Anyway, he is not a problem anymore. I had a really hard time with him in

2nd-5th

grades. I think that is why I ignored my DD's issues. I figured she would grow

out of them, too. I remember (recently) turning to my DH and saying " How

many years have I said she is going to outgrow this? " and I can look back and

see a progression of behaviors...and the last year it has really accelerated

into a daily issue at school. DAILY ugh. I just want people to see MY CHILD, not

her issue. She has so many good qualities. I could not stand her teacher

last year, she just seemed to hate my child. She said to me today " my teacher

this year is SO much nicer " . Some care, some don't.

~~Lori

Live simply. Love generously. Care deeply. Speak kindly. Leave the rest to

God.

************************************** See what's new at http://www.aol.com

[Guest guest]

WELCOME TO THE GROUP STEVE HUGS DORT FROM MICH;;U.S.A.steve <s_shephard57@...> wrote: just a quick hi to all, steve 50yrs from uk and muscular atrophy sufferer. hope to chat to all soon