Advice

November 23, 2002

Hi Lucian...

I'd like to suggest that you read the book, " The Scoliosis Sourcebook "

by Neuwirth. It will give you a pretty good idea of the risks

involved with scoliosis surgery. On that subject, I believe that the

risks vary greatly from surgeon to surgeon. It would be a good idea to

ask your surgeon to talk about the various risks and to get his/her

specific outcome statistics.

The amount of pain caused by surgery varies a lot from patient to

patient, but most patients will tell you that the recovery period is

pretty painful. I had surgery when I was 42, and I was in a lot of pain

for about 5 weeks. I had pain for a lot longer than that, but it wasn't

nearly as bad as the first five weeks.

Good luck with your decision.

Regards,

November 24, 2002

Dear Lucian,

When I was in France for surgery, I became friends with a number of people

with scoliosis who were also confined to a wheel-chair. They had pain, but

no more than those of us who didn't need a wheelchair. I think the

important thing for you is to be sure you have a surgeon who can deal with

both the scoliosis and other medical problems you have. Good luck.

November 24, 2002

\> I'd like to suggest that you read the book, " The Scoliosis

Sourcebook "

> by Neuwirth. It will give you a pretty good idea of the

risks

I live in Romania... is this book available for download?

> The amount of pain caused by surgery varies a lot from patient to

> patient, but most patients will tell you that the recovery period is

> pretty painful. I had surgery when I was 42, and I was in a lot of

pain

> for about 5 weeks. I had pain for a lot longer than that, but it

wasn't

> nearly as bad as the first five weeks.

OK... it is a surgery pain, I understand this... but I'm more

interested about what happens after recovery. I can't move myself

being in wheelchair...

BTW, how unflexible becomes the back? Is it hard enough to sustain

the body without muscular effort?

All the best,

Lucian

November 24, 2002

Hi Lucian...

You can order the book from Amazon.com:

http://www.amazon.com/exec/obidos/tg/detail/-/0737303212/qid=1038164214/sr=8-1/r\

ef=sr_8_1/104-1051247-6843906?v=glance & s=books & n=507846

The length, and area of one's fusion determines how much one's

flexibility is affected. Do you know which vertebrae will be fused?

Regards,

November 25, 2002

Hi ,

> You can order the book from Amazon.com:

I can read very well in english, but I don't have an international

credit card. Thank you, anyway.

> The length, and area of one's fusion determines how much one's

> flexibility is affected. Do you know which vertebrae will be fused?

I don't know in medical terms... it's in the middle region, probably

20% of spine.

All the best,

Lucian

November 25, 2002

Hi ,

> When I was in France for surgery, I became friends with a number of

people

> with scoliosis who were also confined to a wheel-chair. They had

pain, but

> no more than those of us who didn't need a wheelchair. I think the

> important thing for you is to be sure you have a surgeon who can

deal with

> both the scoliosis and other medical problems you have. Good luck.

I don't have other medical problems... I'm not concerned about being

in wheelchair... I'm concerned about how well I'll sit a long time...

Now I have my comfortable positions, but with a more erect body I

must find another positions.

All the best,

Lucian

November 26, 2002

Dear Lucian,

It is very important that after your surgery you have good physical therapy

so that your body can find a new, comfortable position. I spent two months

at the Centre des Massues in Lyons, France: after the surgeons operate,

patients are transferred to another floor and undergo intense physical

therapy. Does Romania have a National Health Service? Will it permit

patients with particular problems to go out of the country? If you want

more information on Lyons, please email me privately and I will send it to

you.

November 27, 2002

Dar Lucien, I found that after my fusion surgery, I was able to move

about very well, only very slowly as I got used to my new back. Yes

there was pain, mostly in the first 6 days. For me, it was a matter of

having a good attitude. Right now, I'm 4 mo. post-surgery and my MD has

told me I'm 2 months ahead of 99% of those at the same time post-op.

Now that it has been 4 mohth post-op, I can truthfully say that I don't

FEEL constricted in my movements. I can get down on the floor, get in

and out of bed, do any household chores (within the limits of my

asthma), drive; anything I want to do, I do. My surgeon told me I

could do anything I wanted to do, but it would hurt if I move in the

wrong way--my body telling me to find another way!

Lana

November 29, 2002

> therapy. Does Romania have a National Health Service? Will it permit

> patients with particular problems to go out of the country? If you

want

> more information on Lyons, please email me privately and I will

send it to

> you.

Romania is a free country, I may do whatever I want, but I don't

think I'll ever aford it.

Thanks,

Lucian

November 30, 2002

Lucian,

I wasn't clear about Romania permitting people to go out of the country: in

Italy the National Health Service will not " permit " (in the sense of will

not PAY for) patients to go out of the country to have operations done that

can be done in Italy. I did not mean to infer that Romania is not a free

country and hope I did not offend you.

With best wishes,

from Italy

February 16, 2004

Hi Helen, You express your feelings very well. I was 40 when I first

developed Reiter's and I still felt too young. This group of illness ages you

quickly. You now longer take things for granted. Mobility and independence are

compromised. I have children that are your age. I would hate to see them

having to deal with the problems that you have. I understand your mom's

concerns. To reassure you, things will get better. Usually the flares subside.

I can no longer work but I have developed other skills that I take pride in.

First I had to get over the bitterness that I felt at having lost my career,

mobility and way of life that I was accustomed to. I had counseling to help me

get to the level of acceptance that I have now. I would suggest that you find a

good counselor that understands what it is like to live with a chronic illness.

I would also suggest that you get back to school even if it is just one class.

It will give you a feeling of normalcy and occupy your mind. Develop a hobby.

You need something to look forward to each morning when you get up. After I

lost my career in teaching I felt I didn't deserve to spend time doing something

that I enjoy. I was punishing myself. I too just wanted to withdraw. I would

imagine myself just wandering out into our back field and disappearing. I would

hibernate in the tub in the bathroom. I don't know if this post has been

helpful. Don't feel like you are confiding to strangers. We are all in this

together.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

February 16, 2004

Hello Helen,

I've just read your posting and you sound as though you've almost hit

" rock-bottom " and you're crying out for a bit of help.

Obviously I can't compare my stuff with what you have, for a number of

reasons, but I'd like to try and reassure you about your condition, if

nothing else.

We do have some similar problems and until quite recently I've been feeling

rather as you seem to be feeling now....I.e. Dejected, aching, deserted and

somewhat remote from what I know and, from what I want to be doing with my

life.

Like you, I should have been at Uni' this year and I should have been on the

crest of a wave by now.

And also like you, I became ill and have been unable to go there to study,

after making all of my arrangements and getting everything clear in my mind.

I'm also living at home with my mother and sister, because there really

isn't anywhere else for me to go. (And I'm 46 years old, so that doesn't

really help either.)

And, for my sins, I'm forced to sit and watch " Corrie " and " Eastenders " too!

(Ha! Ha!)

Now, you may, or may not, have noticed that I haven't been posting for a

little while, and that is because I appear to be in some kind of " remission "

at the moment. And I'm waiting to see what happens, before I climb up onto a

" dung-heap " and start crowing about it!

Well, my eyes aren't playing up and my head is clear and the fybromyalgia

has just disappeared, practically overnight.

In fact, except for a couple of small aches around my pelvic area, I feel

better than I have for many months. (At time of writing!)

There doesn't appear to be any rational explanation for this latest

development either, however I think you'll find that it's going to happen to

you one of these days...... " Just like that! "

(In the now immortalised words of Tommy .)

It may take a little while but I feel certain that you will be able to go

back to the University, and to carry on with your degree, one of these days.

And, that this disease will abate to allow you to get on with your life and

to do practically whatever you want to do with it.

The French doctors that you've seen seem to be well versed and ahead of the

Brit' doctors in this field; and it's a good job that they are, by what

you've told us earlier.

(I have had a similar kind of response to my requests for assistance from

Brit' G.P.s to what you've had, and frankly I think it's outrageous.)

And if you are still getting this kind of response over here, do not let

them grind you down.....Make sure that you keep at them.

Also do try to keep your thoughts positive, regardless of how much you are

aching, or of how low you feel.

Talk with your doctor and also discuss it with your parents and your best

friends (and boyfriend), and let them know how you're feeling too!

(But remember, that if you do ever get to feeling so bad.......Even a chat

with the Samaritans will help you get your life back into perspective.)

I'm sure that everyone here will agree with me on that score.

It's difficult for you because you are relatively young and because this

" darned thing " is spoiling your life, by preventing you from doing what you

want to do.

But you should never be afraid to speak with this group at any time, because

there are people on this site, who have already dealt with the worst that RS

and all of life's other complications could throw at them.

And even in the face of adversity, they can still find the time to smile and

joke about it.

But anyhow, you're unlikely to ever feel anywhere near as bad. (We all

hope.)

So if you do want to talk about your worries, problems, etc...........

Well, I'm sure that we're all listening to you, Helen.

May I also suggest that you take it easy for a while and try to treat this

unwanted break from Uni' as a well-earned intermission, or even as a bit of

a holiday, for a little while?

I have found that being angry about my disease and my position hasn't helped

me............In fact my anger and frustration have only seen my pain and

stress-levels worsen.

Anyhow, I must cut this one short now because it's already taking up a lot

of space.

But take care and feel free to speak with anyone on the site, at anytime of

the day or night.

Best regards!

Mal.

P.S. Things could be worse for you Helen......You could be like "

Barlow! " (Ha! Ha!)

February 16, 2004

In a message dated 2/16/2004 11:57:05 AM Pacific Standard Time,

wakey81@... writes:

am alone in the house all day

Helen, my heart aches for you!

Please, do feel free to share with this list. We are really people, just

happen to live all over the world instead of next door.

I am just curious, since you were so near to completing a degree... could you

possibly do a distance program at home, and complete your course work while

you are at home? I know much of the time you are not feeling well.... but...

if you have a few good hours a week... if you could pursue and complete your

degree, maybe it would help you feel better?

Currently I am working on finishing my degree through Washington State

University Distance Degree Program. They have around 7000 students currently,

and

all over the world.

Helen, I am thinking of you! I hope you experience the same as some others

on the list have... where one day you wake up and you are feeling better...and

the next more and more and... It does happen.

Sending you best wishes!

K

Adrienne's Mom

PS, I forwarded your note to Adrienne, she is really busy in classes right

now, but perhaps she will have a free moment in the next week or so and be able

to respond.

February 17, 2004

----- Original Message -----

From: " helen wakeford " <wakey81@...>

> In very English syle, I feel a bit daft (completely irrational, I know!)

> moaning to people who I don't know, in this group, when they probably feel

> equally bad or worse than me.

Not to worry Helen, I think we all felt a bit daft when first joining this list.

I am

one of the old timers on here in more ways than one and can emphathise with your

frustration with this rotten disease.

Once you get your disease under greater control you will find that you do have a

chance to get back to school and get your degree. I know I did, when I first

joined

this list I was just starting my masters and now have my Doctorate of Sacred

Theology

and Doctor of Divinity. The latter being an honorary degree. The unfortunate

problem

with the letters used to abbreviate the other one have an unlikeable

conotations. The

letters are S.T.D. and given the recent discussion of STD's I find it ironic.

Of

course I did not get my problem with that particular degree or the other type.

Ray

mentioned that for us old timers, trying to figure out what the trigger point is

a bit

counter productive especially 30 odd years into the diseases.

For those that don't know, I suffer from AS/ReA/RA/PA/Parkinson's/Type 2

Diabetes/ and

I am deaf in one ear and cant hear out of the other. Ready for the knacker's

yard

methinks.

Hang in there Helen, believe it or not it can get better. When I originally

went back

to school in 1984 I really could not handle a full load and there were days I

wished I

wasn't their. But I found some outlet for my frustrations and went underground

as a

Mascot. Those furry creatures you see at sporting events. That kept me

exercising

and put money in the bank to pay for the rest. Did much by corresspondence with

a

couple of minimal residencies, and I really squeaked through.

So if there is that much life in a guy who is older than dirt, then you have a

wonderful life to live yet.

One warning, even if you get the flu shot, stay away from folks with the flu, it

can

flare up the immune system.

Heck I will use my full title in this email

The Most Reverend Francis Wigley

Abbas Primus American Orthodox Church in Canada.

but really just plain +Dave

" Everyday I beat my own previous record for number of consecutive days I've

stayed alive. "

February 17, 2004

In a message dated 2/16/04 12:52:36 PM Pacific Standard Time,

KayBraddock@... writes:

> I had counseling to help me get to the level of acceptance that I have now.

> I would suggest that you find a good counselor that understands what it is

> like to live with a chronic illness. I would also suggest that you get back

> to school even if it is just one class. It will give you a feeling of

> normalcy and occupy your mind. Develop a hobby. You need something to look

> forward to each morning when you get up.

dear kay,

i know this part of your post is for helen, but i'd just like to say thank

you. very inspiring as usual and some very very good points, including the one

at your close, which talks about not being strangers to chronic illness and

it's challenges.

and

dear helen,

in addition i would like to say, first, i am very sorry about your illness

and the disappointments it can bring along. being chronically ill is a whole

different ball game that no one can prepare you for. having this group to

relate to can help a lot and so please don't ever think that your expression is

not worth someone else's time and caring in this arena or any other.

i also wanted to say that it's important, in my opinion, to please be kind to

yourself. work out some of the anger and take steps to learn to love

yourself more. again and again. sometimes, all we can do is focus on taking

care of

ourselves in body, mind, and spirit, by loving ourselves and all of the

things that go a long with that inner peace of compassion and acceptance for the

self.

take care,

barb

May all beings be free from suffering and its causes

May all beings have happiness and its causes

May all beings be free from attachment, aversion, anger and fear

May they never be separated from the bliss that is sorrowless.

February 17, 2004

Dave's right...

We were all new here at one time but we slowly become a family.

The new people often help the oldies in ways that are totally wonderful.

You are as much help to us in many ways as we can be to you.

We have the experience but then again we have gotten stale sometimes and

fresh new view points and info your drs give you are so helpful

BTW Dave,, I love your title.. you need a wheelbarrow for that one don't

you:)

Liz

~~~~~~

" Happiness comes of the capacity to feel deeply, to enjoy simply, to think

freely, to risk life, and to be needed. " **Storm on**

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult ADD GROUP PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

February 17, 2004

Helen you know we all have levels we go up and down with.

Sometimes feel decent.. other times like doggy doodoo. Don't ever feel

daft about sharing... No way. It's ok.. that's why we are here.. you know

that OTHERS outside the circle of our diseases do not get it at all..We

being here for each other is a blessing.. a totally warm and wonderful

experience.

so Share share share.. and whine all you want.. there is love here for ou

Liz

~~~~~~

" Happiness comes of the capacity to feel deeply, to enjoy simply, to think

freely, to risk life, and to be needed. " **Storm on**

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN-LizKP1952@...

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult ADD GROUP PAGE: http://members.tripod.com/~LizK/addult.htm

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

February 17, 2004

Helen,

This disease can be very depressing and being stuck at home alone is

definitely depressing. Do they have any sort of Arthritis society in

Britain with support group meetings?

I'm an old 41 yr. old codger now, but I've had reactive arthritis since I

was 10. I managed to get through college but it was a long, hard struggle

mainly because of the iritis. I work full-time now and like my job and am

doing well on Enbrel. Things can get better. I got terribly sick a couple

of years ago. It was harrowing and changed me and changed who I think my

friends are. When you get so sick you really see crystal-clear who is good

for you and who isn't. But, I'm doing much better now!

I'm not surprised you feel down about having to leave Oxford. Please know,

it won't necessarily always be this way. This disease tends to wax and

wane. It may go completely away allowing you to resume your previous life,

or you may have years where it gets much better and you can get a lot done.

Please seek out all the support services you possibly can so that you don't

feel so isolated.

When we're young, it feels like the current situation will go on forever and

it's hard to see the future. Things will get better!

God Bless,

Janet in San Francisco

ReA since 1973; diagnosed 1997; HLA-B27+

February 18, 2004

Liz wrote:

> BTW Dave,, I love your title.. you need a wheelbarrow for that one don't

> you:)

Yeah, neat title but really means I have more headaches for less pay. I do not

get

paid now so you can figure out what I make with that title.

Welcome Bob, you will learn over time that there is no standard anything with

these

diseases. Some can go for years without a flare and others flare quite often.

Keeping a positive mind set really helps, stress can be devastating. Many of us

are

also on Prozac type antidepressants and drugs like Elavil, they are part of

effective

pain management.

A friend sent me this bit of philosphy, I do not know who wrote it, but I do

like it.

" Life is not a journey to the grave with the intention of arriving safely in a

pretty

and well preserved body, but rather to skid in broadside, thoroughly used up,

totally

worn out, and loudly proclaiming...

'Wow! What a ride!' "

+Dave

" Everyday I beat my own previous record for number of consecutive days I've

stayed

alive. "

November 7, 2005

----- Original Message -----

From: Beth

My daughter has polycythemia (a blood

condition that requires frequent trips to the hospital for what is

basically " bloodletting " ) and I talk to her about that, thinking maybe

she would in turn bring up Isa, but that hasn't worked either. What

would be a good way to approach her? Beth

Can I suggest she hasn't brought it up, because it is not of any importance to

her? Isa is Isa! Isa is her friend - end of. I respectfully suggest that

rather than it being a problem between your daughter and your friends daughter,

it is in fact, YOUR problem:-))))) I mean that VERY nicely. What WE think is a

huge problem, is not even thought of by children. They are far more accepting

of peoples differences than we give them credit for.

Why not leave your daughter and Isa to sort things out for themselves, if

indeed, there is, in their eyes, anything TO sort out? :-)

Relax Beth, the world aint gonna collapse if and when your daughter, or ISA

mentions (what you consider to be) the unmentionable:-)

One thought, to appease your worry, have you actually ever discussed the

differences in the two children with Isa's mom? Someone did mention on here

that, you know, even Isa's mom might not even think about it, or has not yet

come to terms with Isa being small.

You really do need to tread very carefully.

Relax, sit down, have a drink:-))))

Fred, the old fart with a smile on his face.

November 7, 2005

Fred,

Good advice about letting the kids work problems out themselves, however in

Beth's first post she indicated that her daughter had indeed noticed the

difference and was questioning her about it. So I commend Beth for seeking

advice on how to deal with the fact that her daughter was questioning why

Isa was smaller.

Bruce

Re: Advice

>

> ----- Original Message -----

> From: Beth

>

> My daughter has polycythemia (a blood

> condition that requires frequent trips to the hospital for what is

> basically " bloodletting " ) and I talk to her about that, thinking maybe

> she would in turn bring up Isa, but that hasn't worked either. What

> would be a good way to approach her? Beth

>

> Can I suggest she hasn't brought it up, because it is not of any

importance to her? Isa is Isa! Isa is her friend - end of. I respectfully

suggest that rather than it being a problem between your daughter and your

friends daughter, it is in fact, YOUR problem:-))))) I mean that VERY

nicely. What WE think is a huge problem, is not even thought of by

children. They are far more accepting of peoples differences than we give

them credit for.

>

> Why not leave your daughter and Isa to sort things out for themselves, if

indeed, there is, in their eyes, anything TO sort out? :-)

>

> Relax Beth, the world aint gonna collapse if and when your daughter, or

ISA mentions (what you consider to be) the unmentionable:-)

>

> One thought, to appease your worry, have you actually ever discussed the

differences in the two children with Isa's mom? Someone did mention on here

that, you know, even Isa's mom might not even think about it, or has not yet

come to terms with Isa being small.

>

> You really do need to tread very carefully.

>

> Relax, sit down, have a drink:-))))

>

> Fred, the old fart with a smile on his face.

>

November 12, 2007

,

I am not sure that your doctor will know what you mean when you ask

him for the sublingual form of HCG, since I beleive this is something

that was created by people doing the protocol that did not want to

inject.

If you have more HCG, you can make your own sublingual formula. The

instructions are in the " files " section to the left of your screen. I

think that some of the HCGers on these forums are mixing the HCG as

if they would inject and just putting the drops under thier tougue.

HTH

Vanjuscod

>

> Thank you all for your responses that you posted with

> my question before. I plan on calling my doctor

> tomorrow to see if I can get the HCG in the sublingual

> form instead of the injectable form. I have too much

> pain from the needles for some reason, and I have

> about 8-9 bruises from the last injections I did. My

> problem is that tomorrow will be my 4th day with any

> HCG in my system. I am unsure what to do until I can

> hopefully get the sublingual form of HCG. Should I

> load again for two days and start the system again?

> I'm sorry to bother you all, but I really am unsure

> what to do, I have another 10-15 pounds I would like

> to use. I have been doing the injections for 25 days.

>

> __________________________________________________

>

May 18, 2008

Dan,

They'll do all they can to restore your hearing - and they have some

amazing options for that. The primary purpose of the operation will be

a clean dry ear. My doctor preferred to do reconstruction with the

cholesteatoma removal. It was first noticed in my right ear when I

figured out I couldn't hear out of it - it had extensive damage, but the

doctor did an amazing job with a prosthesis (it's actually my better

ear). I had one recurrence in my right ear, but nothing since. My left

ear began showing signs and they caught it early. For the left ear he

just reshaped the hearing bones - it doesn't work so well (maybe I

dislodged them somehow).

I would call myself hard of hearing, but my wife would say " you're just

not listening to me! " :-)

I do have a lot of trouble hearing in meetings ... I'm working on that.

I keep looking into gizmos that will help me with that. I wish my

colleagues could learn to project their voices better. Also, if people

get your attention BEFORE they start speaking to you, that helps a lot.

Things can vary quite a bit, but make sure you have a top notch

otologist/neurotologist that does this operation a lot. A lot of us

experience a good recovery.

Matt

Hills wrote:

>

> Hello all,

>

> So my c-toma surgery is next week. I have a large c-toma in my left

> ear. I have had some unsteadiness on my feet lately and I have some

> tinnuitis and throbbing in that same ear. After this surgery, am I

> going to have any hearing at all in that affected ear? Do you all

> consider yourselves deaf or hard of hearing after this is all said and

> done. I'm just looking for some positive advice. I am trying to stay

> calm about it but I know that if I don't get it taken care of it could

> get a lot worse. I am just wondering what should I expect. Please help

> any advice would be great.

>

> Dan

>

> ------------------------------------------------------------------------

>

> R

>

> ------------------------------------------------------------------------

> Keep your kids safer online with Windows Live Family Safety. Help

> protect your kids.

>

<http://www.windowslive.com/family_safety/overview.html?ocid=TXT_TAGLM_WL_Refres\

h_family_safety_052008>

>

--

May 18, 2008

Matt,Do you wear a hearing aid? Dancholesteatoma From: matthewm@...Date: Sun, 18 May 2008 17:32:26 -0400Subject: Re: advice