Need Some Advice

September 10, 2002

Hi ita,

I empathize with the position that you are in and I commend you for trying to play as active a role as you do, in trying to support as she learns about managing her arthritis. It may be somewhat harder for your daughter, because of the situation at home, but she does sound very mature for her age and it seems like she appreciates the support and concern she is getting from you. Your input is making a difference and later on, when she's older, will probably thank you for this. You may be helping to prevent future disability. You understood and supported her when others didn't. Keep doing what you're doing. Even if it seems like the odds are against you, don't give up.

Take Care, Georgina

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

From: jbelle831

e,Thanks for the response. Yes, I could go for the court mandated intervention, but then I would be hurting MK and myself. My ex can be very vengeful. He would make it so I couldn't see the kids - he can be hateful. Not only that, I don't want to put the kids through any more than they all ready have been. My ex would put the kids in the middle and that isn't fair to them, so I just let things go as they are - as far as custody, etc. is concerned.Yes, MK is a mature 10 year old. At least she has been the one taking the initiative to take her meds. Her dad says it all is coming from her nerves, and that it's all my fault. I look at him like he's crazy. I talk to her every night about taking her meds. She is feeling much better, but I fear that the pain will be back. I try to explain this to her. I think she understands. Now she is telling me that the meds are making her sick. I ask if she is eating when she takes them and she says yes. It is so hard. I hate to see her going through all this. Right now she is on 15mg mtx - so that is 6 small pills at one time. On top of that is 1 pill a day of folic acid, 3 tabs a day of calcium (tums) and 2 pills a day of naprosen. Since she is not hurting, I would be soo happy if she would at least take the mtx and folic acid. I try to explain this to her, but I fear that with her in the household of no support I feel as if I'm talking to a brick wall.Thanks for listening.ita & (10 systemic??)> ita,> I don't know really what to suggest except for perhaps court mandated intervention. It is a crime for parents not to follow treatment, even for religious reasons people have been taken to court because of lack of treatment for their child. If I remember right you taking on full time care is not an option. I don't know if your daughter would be old enough to follow a medi-set. You put all the pills in it for a week or more depending on how often you can do it and what kind of set you can find. She then would be responsible for taking them at the right time. Perhaps you could call to remind her. > > That is a tough one. I just don't understand how her dad and grandparents can just ignore it. Sorry just venting about them on computer here. Your daughter is young to manage this but if she is a mature ten you could discuss with her why she needs to follow the docs advice and try the medi-set. Someone else may have some other ideas.> > e, mom to joe, 15, poly

October 21, 2002

Dear BK,

I had the same symptoms of my feet hurting really bad (especially on the

bottoms) when I got up in the morning. I remember weakness in my legs and

arms as well. Those to me are classic Lyme symptoms. If you can tolerate

it, get an exercise mat, and lie down and start with some deep diaphragmatic

breathing. Then stretch and tighten your muscles in your whole body and

release them, and continue the breathing. Use a rope, an old tie, or I

bought a yoga strap. Put in around the bottom of your foot and stretch your

foot straight up as much as you can. You can work your way up to a right

angle. Pull the rope pushing your leg and foot towards you and flex it so

that you feel the stretch in your calf. Hold for 30 seconds, and then do the

other one. Repeat for two or three times. This will not only strengthen the

muscles in your legs, but in your arms as well. Then just relax on the mat

for a while and do some meditation. This will help with the muscle and foot

pain and weakness, but you should try to do it every day. Also drink a lot

of water - keep yourself hydrated.

Sue Rauch

October 26, 2002

I remember you because you use the name dizzy cause you were always dizzy. I

started on valium 3 weeks ago and that stopped the dizzy spells. I take 1 mg

every 3 hours and it has made a difference in my life! As far as pain, I use

darvocet if I can find it, but have lots of oral pain meds from my accident.

Ultram is non narcotic and helps somewhat with the pain. KIM

December 17, 2002

Sherry,

It's up to the Dr to decide if she is a good candidate or not. As a

mom, and since she is 25 yrs old, you can only tell the dr what you

see in her behavior. It's also possible she will take this seriously

enough to stay on her meds. They will know if she comes off. Has she

already had her biopsy? Does she have enough liver damage to actually

NEED treatment at this point? If she is a Genotype 1 and has very

little liver damage and does not drink, she can wait for awhile.

Maybe with this, she will take the treatments as required because you

are taking them. Is she aware how very important this could be to the

rest of her life? Maybe she needs a little shove and be educated to

the fact that if she does nothing, she COULD possibly die from this.

It's a stretch I know, but sometimes scarring the hell out of our

kids is good for them if you know what I mean.

Good Luck

LeighAnn

> Hi Everyone:

> Hope this holiday season finds everyone in good spirits!

>

> I got a big problem, my daughter, (will be 25 on Dec. 31st)

> was diagnosed with Hep C too, we both have the same primary doctor

&

> gastro doctor(who are both really good), they want to put her on

the

> Peg-Intron like me, but here's the problem: she is all the time

> going around crying when she isn't the center of attention, she is

> on anti-depresseants and an anti-inflamatory for her, but she won't

> take her meds like she is supposed to. I am going to see the gastro

> doc this morning,but am I wrong for me going to tell him that she

> isn't a good candidate for the Peg? I can't in good conscience just

> stand back and not say something as a mother & wait for something

to

> happen. She has had suicidal thoughts in the past.

> Any advice is greatly appreciated.

>

> Thanks,

> May God Bless you & keep you safe,

>

> Sherry Lynn

December 17, 2002

Sherry Lynn, I understand your concern. As a mother, I think I would tell the

doctor what I know, too. It will help him to make a better informed decision to

put your daughter on treatment, and maybe he will want to put her on an

anti-depressant before she starts with it.

You're in my prayers.

Marilyn

February 12, 2003

Hi, Charlene. I'm just a parent, not an SLP, so take my opinion for what

it's worth. But this does not sound right to me. My son was diagnosed

severely apraxic at age 25 mos and it's true that in the beginning he did not

even try to imitate. But as he progressed, of course he did start to imitate

and eventually speak. I personally don't see how this means a child is not

apraxic.

Sandy, Illinois

August 25, 2003

Your grandson is very lucky to have you! Your love and searching

to help your grandson is what Grandma is all about -and we are all

here to help! I hope some of the professionals also jump in to help.

How many different SLPs has your grandson had over the years that

could not diagnose the reason for his lack of speech?! I mean how

can they know for sure he has sensory integration dysfunction while

they can't give you a clue if his lack of speech and lack of ability

to sign is from muscle weakness, motor planning problems, hearing

impairments from frequent ear infections. cognitive delays (be

careful of that one since testing a child like your grandson needs

to be done appropriately) or a combination of reasons that need to

be addressed?

Some professionals may concentrate on the wrong therapy due to the

variety of diagnosis your grandson has -so you are right in

realizing that the first step is finding out the key reasons why

your grandson is both essentially nonverbal and unable to sign.

There again could be a number of reasons why he is not signing well -

which of course is another way for him to communicate right now.

Does he at least know the important simple signs such

as 'hungry' 'thirsty' etc.?

What type of therapy have they tried -which may tell us what they

suspect the problem was? Also -how long did they try whatever

approach they were trying (no improvement over 6 months tops I'd

move on) Did the therapist have any prior experience or knowledge

about working with a child like your grandson? I'm sure they did -

but do the therapists that work with your grandson use a

multisensory approach? Was the therapy one on one and how often?

I'm not sure if this is what you are looking into but I would

suggest you contact your states Resources for the Visually Impaired

Including Deaf Blind in your area to find recommended schools since

most are experienced in teaching speech using a multisensory

approach that would appreciate your grandson's unique special

needs. There are typically many wonderful programs in all

communities geared to children with hearing and visual impairments

which your grandson would most certainly qualify for.

You can search for some local resources here as a starting point

http://www.speech-express.com/regional-resources.html

Hearing: There are not many in this group who have children that

are blind and communication impaired -more that deal with deafness

or hearing impairments and communication impairments. Due to your

grandson's frequent ear infections there is a good chance that his

speech could partly be delayed due to ear infections during critical

times of speech development -which given his age is probable. During a

severe ear infection hearing can be impaired to the point where the

child is essentially deaf. So in theory -your grandson could have

at times been deaf as well as blind at times. Are

all positive there are no even minor/subtle impairments of hearing from the

frequent ear infections? Also -does he still have frequent ear

infections because each time he has one it could be impairing his

ability to hear.

DSI: Since the DSI is diagnosed - what type of sensory integration

dysfunction has your grandson received through OT and has that at

least improved at all over the past 2+ years of therapy?

Feeding: What type of oral motor therapy? One on one? Any improvements here?

CP: Since the cerebral palsy is mild -and since you say that he is

able to get around pretty well -I'm wondering if the actual label of

CP is even accurate? What I mean is that in theory some

children have CP due to the pockets of high and low tone, but some

MDs a diagnosis to describe the reason for the CP diagnosis. (for example they

could say

hypotonia/hypertonia) I only bring this up because you want to know

(again) what is creating the communication impairments -weakness,

motor planning, or even sensory problems -and don't want some professionals to

work on the CP due to his diagnosis if that's not his main problem.

" I personally feel it is more useful to think of children with these

difficulties as being at varying stages on a continuum of motor problems rather

than dividing them into (probably phony) categories of " CP " or " no CP. "

http://www.prematurity.org/research/helen-mildCP.html

Blind: Here is an archived message from another member who has a

blind child that is also apraxic.

/message/20373 -

if you have trouble getting into the site to read this let me know

and I'll repost it -it's long. In general Lynn's son Austin

who is blind with apraxia had great improvements in both motor

planning and speech within two weeks of EFA (Omega 3 with a small

amount of Omega 6) supplementation. There was also a change in the

appearance to her son's eyes -his condition caused dark circles

under the eyes which virtually went away. Do you know anything about

EFAs? I would suggest you read up on EFAs and vision -there are

many articles you can share with your grandson's MD -and for speech

and motor planning aspects of EFAs you can also read The LCP Solution book

and for an overall view of how to help -The Late Talker book.

Here is one article you may find of interest from a nonprofit that

helps blind and hearing impaired children:Your grandson is very

lucky to have you! Your love and searching to help your grandson

is what Grandma is all about -and we are all here to help!

How many different SLPs has your grandson had over the years that

could not diagnose the reason for his lack of speech?! I mean how

can they know for sure he has sensory integration dysfunction while

they can't give a clue if his lack of speech is overall from muscle

weakness, motor planning problems, hearing impairments from frequent

ear infections. cognitive delays (be careful of that one since

testing a child like your grandson needs to be done appropriately)

or a combination of reasons? And since the DSI is diagnosed - what

type of sensory integration dysfunction has your grandson received

through OT and has that improved at all? Some professionals may

concentrate on the wrong therapy due to the variety of diagnosis

your grandson has. So the first step I would say is finding out the

key reason why your grandson is both essentially nonverbal and

unable to sign.

There are not many in this group who have children that are blind

and communication impaired -more that deal with deafness or hearing

impairments and communication impairments. Due to your grandson's

frequent ear infections there is a good chance that his speech could

partly be delayed due to ear infections during critical times of

speech development -which given his age is probable. With severe

ear infections hearing can be impaired to the point where the child

is essentially deaf. So in theory -your grandson could have at

times been deaf as well as blind during speech development. Are you

positive there are no minor impairments of hearing from the frequent

ear infections? Also -does he still have frequent ear infections

because each time he has one it could be impairing his ability to

hear.

Since the cerebral palsy is mild -and since you say that he is able

to get around pretty well -I'm wondering if the actual label of CP

is necessary for him? What I mean is that in theory some children

have CP due to the pockets of high and low tone, but some MDs use

different diagnosis when it doesn't really interfere with movements

since it's so mild. (for example they could say mild

hypotonia/hypertonia) I only bring this up because you want to know

(again) what is creating the communication impairments -weakness,

motor planning, or even sensory problems. For example there could

be a number of reasons why he is not signing well -which of course

is another way for him to communicate right now. Does he know the

important simple signs such as 'hungry' 'thirsty' etc.?

What type of therapy have they tried -which may tell us what they

suspect the problem was? Also -how long did they try whatever

approach they were trying (no improvement over 6 months tops I'd

move on) Did the therapist have any prior experience or knowledge

about working with a child like your grandson? I'm sure they did -

but do they therapists that work with your grandson use a

multisensory approach?

I'm not sure if this is what you are looking into but I would

suggest you contact your states Resources for the Visually Impaired

Including Deaf Blind in your area to find recommended schools since

most are experienced in teaching speech using a multisensory

approach that would appreciate your grandson's unique special

needs. There are typically many wonderful programs in all

communities geared to children with hearing and visual impairments

which your grandson would most certainly qualify for.

You can search for some local resources here as a starting point

http://www.speech-express.com/regional-resources.html

Here is an archived message from another member who has a blind

child that is also apraxic.

/message/20373 -

if you have trouble getting into the site to read this let me know

and I'll repost it -it's long. In general Lynn's son Austin

who is blind with apraxia had great improvements in both motor

planning and speech within two weeks of EFA (Omega 3 with a small

amount of Omega 6) supplementation. There was also a change in the

appearance to her son's eyes -his condition caused dark circles

under the eyes which virtually went away. Do you know anything about

EFAs? I would suggest you read up on EFAs and vision -there are

many articles you can share with your grandson's MD -and for speech

and motor planning aspects I suggest you read The LCP Solution book

and The Late Talker book.

Here is one article you may find of interest from a nonprofit that

helps blind and hearing impaired children:

" Speech and language is a major developmental milestone for all

children. Sight plays an important role in speech development for

typical children; they see something and parents identify it. This

process begins very early, much earlier than when a child begins to

speak. So it's not surprising that blind, visually impaired and

especially deaf/blind children are at risk for speech delays.

Our Speech and Language department provides individual speech and

language services to blind, partially sighted, and dual-sensory

(blind/deaf) children ages 18 months to 6 years of age. Early

intervention has a major impact on the patterns of development of

language. Language skills tend to be delayed secondary to the fact

that blind children learn communication through alternative routes.

Blind children tend to use words in an imitative (echolalia or

parroting) fashion without an appropriate understanding of their

meaning. They use many verbal routines or stereotypic speech

(imitative chunks or phrases) early in their speech development.

Their descriptive language is less precise than sighted children

secondary to the fact that they have to identify objects through

sensory means. All modalities are used to help the children acquire

indistinguishable language from their sighted peer.

Blind children may be slightly delayed in learning sounds that do

not have identifiable tactile placement. Teaching tongue placement

for proper speech sound production is much more difficult because

the child cannot " see " where the tongue needs to be placed through

imitation. The sounds have to be learned through phonological

awareness and auditory prompting.

Children with dual sensory impairments have to be taught

communication through tactile modalities in very simplistic forms.

Until the child with dual sensory impairments can make the cognitive

connection between an object, the sign, and the hand-to-mouth

imitation, the teaching of language cannot be advanced. Development

of language is significantly slower than sighted children.

Children in the center receive language, articulation, and oral

motor therapy. Services are provided so that the children acquire

age appropriate speech and language skills prior to entering

kindergarten. It is our hope that speech and language therapy will

provide them with the skills that they need in order to communicate

and become independent, self-confident children. "

http://www.blindkids.org/programs/speech.html

Here for example is another link that will help -lots out there like

this!

" To help families worldwide, Clinic offers Distance

Education courses for parents of deaf and hard of hearing babies and

preschoolers, as well as parents of young deaf-blind children.

Families receive lessons and videotapes offering information on

language, auditory learning, speech and child development.

Clinic staff responds to parents' reports with personal

letters of encouragement, providing hope and instilling confidence

as parents help their children. The Courses are available in English

and Spanish, and they have been translated into numerous languages

by other organizations in various countries around the world. For

more information, contact Maura dale at mmartindale@....

We also offer online enrollment through our web site. "

http://www.oraldeafed.org/schools/johntracy/edprograms.html

=====

September 3, 2003

,

Thank you for so many wonderful thoughts and suggestions. I will try

and address some.

SLP, OT, PTs: He has had SLP thru EI (2 yrs), preK (1 yr) and thru

private practice (8 mo). In EI the SLP (2/3 per month) was working more

with feeding issues and oral sensitivity. Since he was FTT that was the

main concern at 1 - 2 yrs. The private ST (2x month) was in the

augmentative comm. area and was during his 2yr. She tried working with

pictures (with input from his VI). The ST at preK (30 min 1 on 1 and 30

min classroom) was basic speech therapy. No success to speak of thru

the private or the school ST. His Mom and I have taught him all the

signs he know (about12-15) and has actually used 1 and 2 appropriately..

No ST has ever said what they suspected the problem/diagnosis could be

only that he is a very unusual case considering all his problems and he

goes against the " norm " - he is both hpo and hper sensitive.. His ENT

put in tubes at age 1 so the hearing wouldn't be affected. He did pass

an ABR at age 2 so ENT is concerned about hearing being a problem.

The EI OT (2 - 3 x monthl) worked on other sensory issues such as him

touching objects (beans/rice/cream), brushing techniques. He also had

VI therapy thru EI. His EI was thru the Alabama Institute for Deaf and

Blind. He was initially in UCP EI's program but after 1 year we wanted

to key in on vision. We continued his PT with a private PT and a

private OT specializing in myofacial release due to tightness in back,

legs, and feet. He no longer receives PT or OT myofacial release and

all say his tightness is within normal range for mild CP. The private

OT (2 x month) has worked on fine/gross motor and sensory issues. He

did attend a private SI play group run by an OT but we didn't see any

improvement after 5 months. As far as oral motor therapy not too much

in that area other than using the Nuk, trying to put our fingers in his

mouth.

Feeding: We took him to a VA feeding clinic and he now eats stage 2

foods and we have started adding very fine ground up foods to the baby

food. Any texture that remains on his tongue causes gag reflex and we

try and get him to work it down. He does not have an actual chewing

motion with his mouth but has tried moving his tongue/mouth in side to

side movement if bite of food might be a little to thick. This isn't

done all the time. He has always had a very poor suck. He holds his

mouth slightly open and " laps " the nipple with his tongue - looks like a

kitty. He also has a submucosal cleft pallet. He is being followed by

a doc for this but doc is waiting to see what impact the cleft has on

his speech before addressing the surgery issue. Duh - there is no

speech.

He is scheduled to see a Behavior Psych next week (referred by his

Neurologist). He tries to inflict Pain?? To himself when he gets mad

and we wanted to know why and how to help. She will address possible

autism (her specialty). Based on traits the neurologist has listed, we

feel some match Dylan. This is just another avenue we want to pursue if

it will benefit or lead us to the correct type of therapies.

I am ordering the Late Talker book and have been talking to my daughter

about EFA's. She has been having internet problems so having a time

trying to stay connected.

One thing we are so thankful for from your group is the word

developmental pediatrician. We had never heard of one. There are none

we can find in AL so looking elsewhere. We just want someone give a

diagnosis on why not one word so we can go in the right direction of

getting help. We feel like 4 years is long enough for him to try and

talk on his own. Last year his school ST wanted to wait and see if he

could start to talk on his own instead of looking at other ways -

sign/augmentative.

Thank you again so very much

Tina

November 29, 2003

i have been taking Lexapro for a little over 3 weeks, for GAD and moderate

depression. It has helped me greatly, and i have suffered FEW sides. My docs

tell me

the side effects usually show up before the drug really starts acting, when your

body is adjusting, and then fade - that has been my experience too.

I have experienced very minimal sexual sides (my sex drive has actually gone

up -

I think partially because sex is something which raises my anxiety level), mild

headaches, and some intermittent tiredness. You may have some insomnia at first,

which will probably fade, but save your Xanax, just in case.

The jittery feeling may be because of something my doc says is the " dry

sponge "

theory - a lot of people feel " revved up " when they first start taking SSRI's if

their

serotonin levels are low...your brain soaks it up like a " dry sponge " . I felt

almost

speedy at first. That, too, has faded.

I know it's hard when there is so little empirical information available to

you. The

website " Remedyfind " has a collection of ratings and comments about Lexapro, and

other drugs. It has helped me figure out what I am in for.

So far so good for me, and it seems to help people with their panic attacks as

well

as underlying causes.

Good luck, and don't worry!

- P

January 2, 2004

> i have been taking Lexapro for a little over 3 weeks, for GAD

and moderate

> depression. It has helped me greatly, and i have suffered FEW

sides. My docs tell me

> the side effects usually show up before the drug really starts

acting, when your

> body is adjusting, and then fade - that has been my experience too.

> I have experienced very minimal sexual sides (my sex drive has

actually gone up -

> I think partially because sex is something which raises my anxiety

level), mild

> headaches, and some intermittent tiredness. You may have some

insomnia at first,

> which will probably fade, but save your Xanax, just in case.

> The jittery feeling may be because of something my doc says is

the " dry sponge "

> theory - a lot of people feel " revved up " when they first start

taking SSRI's if their

> serotonin levels are low...your brain soaks it up like a " dry

sponge " . I felt almost

> speedy at first. That, too, has faded.

> I know it's hard when there is so little empirical information

available to you. The

> website " Remedyfind " has a collection of ratings and comments

about Lexapro, and

> other drugs. It has helped me figure out what I am in for.

> So far so good for me, and it seems to help people with their

panic attacks as well

> as underlying causes.

> Good luck, and don't worry!

> - P

Astra,

How long did the speediness last and at what dosage? I am at 5mg

for the last 5 days and 2.5 for the 5 days before that. I notice

and a speediness and racing thoughts as well which is unpleasant.

Will these fade? I also get severe nausea in the morning and when I

first take it in the evening. Did the lex help you with your

anxiety?

Thanks Steve

January 2, 2004

Steve -

The speedy feeling went away after about a week, which is when I increased my

dose to

10mg. I think I actually liked the edginess - it made me feel a little more

alive than I had been

feeling. But I switched to Zoloft for a little while, and felt like i was going

out of my head, and

switched back. Now Lex makes me neither edgy nor tired. I almost feel like it's

not working, or

like it's " almost " working, my P-Doc says to give it time. My depression is

mentally there but

emotionally gone. My anxiety remains. Yuck!

i hate how doctors don't listen sometimes!

- P

June 29, 2004

why don't you have him read the groups messages for a

month?

I hope he sees the light.

Maybe you could get a " real " disease -what someone

told me once.

best

greg

--- bearsyisalady <heatherfitz@...> wrote:

> Hi all - I am hoping some of you have dealt with

> spouse's or

> signifigant others who just don't have a clue. My

> husband of over

> ten years is just doesn't seem to understand what I

> am going

> through. He all but said that I am exaggerating to

> get out of doing

> housework. As our family is a bit reversed (I am

> the primary income

> providor) it has become very difficult for me to

> work ful time and

> come home and take care of the house and children.

> Tonight he was

> upset because we have always rented the same house

> on Hatteras

> Island for our summer vacation. It is a three story

> home 5 lots

> from the beach with some of the largest sand dunes

> in America. The

> way things are now there is no way I would be able

> to climb those

> dunes or have a good time so I thought we could go

> to the resort

> condos this year - it is an ocean front condo with

> an elevator and

> no sand dunes to climb over. It is also $200

> cheaper than the

> house. Bottom line is he is furious with me. He

> doesn't feel that

> our " family should suffer because of the PA " . I

> don't know how to

> help him understand that PA is a serious and painful

> disease, not

> something that anyone would " want " to have and while

> perhaps an

> annoyance to him, not the way I would prefer things

> to be. Any

> suggestions?

>

June 29, 2004

, no offense but what a jerk. I am sure deep down he is a good man, but

truly, truly insensitive. contact Fran. She has a wonderful list of how to deal

with people in chronic pain. maybe if he read it, he would have a better

understanding of what you go thru. I am really sorry this is happening to you at

all, and I know that the stress of an argument or family issues definitely does

not help.

good luck, take care,stay strong

annie and the pugherd

[ ] need some advice

Hi all - I am hoping some of you have dealt with spouse's or

signifigant others who just don't have a clue. My husband of over

ten years is just doesn't seem to understand what I am going

through. He all but said that I am exaggerating to get out of doing

housework. As our family is a bit reversed (I am the primary income

providor) it has become very difficult for me to work ful time and

come home and take care of the house and children. Tonight he was

upset because we have always rented the same house on Hatteras

Island for our summer vacation. It is a three story home 5 lots

from the beach with some of the largest sand dunes in America. The

way things are now there is no way I would be able to climb those

dunes or have a good time so I thought we could go to the resort

condos this year - it is an ocean front condo with an elevator and

no sand dunes to climb over. It is also $200 cheaper than the

house. Bottom line is he is furious with me. He doesn't feel that

our " family should suffer because of the PA " . I don't know how to

help him understand that PA is a serious and painful disease, not

something that anyone would " want " to have and while perhaps an

annoyance to him, not the way I would prefer things to be. Any

suggestions?

June 29, 2004

I am so sorry your husband is being like this. I've had moments like

this with my husband too, but what it seems to come down to with is

FEAR and a feeling of helplessness. Men always want to FIX things and

this can't be fixed. Do you think you could get him at a quiet time

and try to get his feelings out about it? Maybe give him some

Websites to look at about pa?

> Hi all - I am hoping some of you have dealt with spouse's or

> signifigant others who just don't have a clue. My husband of over

> ten years is just doesn't seem to understand what I am going

> through. He all but said that I am exaggerating to get out of

doing

> housework. As our family is a bit reversed (I am the primary

income

> providor) it has become very difficult for me to work ful time and

> come home and take care of the house and children. Tonight he was

> upset because we have always rented the same house on Hatteras

> Island for our summer vacation. It is a three story home 5 lots

> from the beach with some of the largest sand dunes in America. The

> way things are now there is no way I would be able to climb those

> dunes or have a good time so I thought we could go to the resort

> condos this year - it is an ocean front condo with an elevator and

> no sand dunes to climb over. It is also $200 cheaper than the

> house. Bottom line is he is furious with me. He doesn't feel that

> our " family should suffer because of the PA " . I don't know how to

> help him understand that PA is a serious and painful disease, not

> something that anyone would " want " to have and while perhaps an

> annoyance to him, not the way I would prefer things to be. Any

> suggestions?

>

June 29, 2004

I can't really tell you how to handle things with your husband;

people are each so unique and what works for one may not work for

another. But I can share with you how I handle similar issues in my

own marriage.

For the most part my husband has always been great when it came to

my many health problems. But in the very beginning when my health

began to be less than perfect he was not always understanding. It

wasn't that he didn't want to; it was more he simply didn't get it.

So I asked him to go to the doctor appts. with me so that he could

talk directly with doc and get the information and answers he needed.

The results were dramatic. #1 my husband heard first hand from the

doc what the issue was and exactly how debilitating it could be. #2

the doc pain a LOT more attention to me and my questions, concerns

ect.

As a result I got a lot better care out of both my doctors and my

husband.

Now if I could just make the rest of the world understand that when

I say that I can't do something because of my arthritis that I am

not trying to slack off. I get very angry when someone says to

me; " oh yeah, well I have aches and pains too " .

> Hi all - I am hoping some of you have dealt with spouse's or

> signifigant others who just don't have a clue. My husband of over

> ten years is just doesn't seem to understand what I am going

> through. He all but said that I am exaggerating to get out of

doing

> housework. As our family is a bit reversed (I am the primary

income

> providor) it has become very difficult for me to work ful time and

> come home and take care of the house and children. Tonight he was

> upset because we have always rented the same house on Hatteras

> Island for our summer vacation. It is a three story home 5 lots

> from the beach with some of the largest sand dunes in America.

The

> way things are now there is no way I would be able to climb those

> dunes or have a good time so I thought we could go to the resort

> condos this year - it is an ocean front condo with an elevator and

> no sand dunes to climb over. It is also $200 cheaper than the

> house. Bottom line is he is furious with me. He doesn't feel

that

> our " family should suffer because of the PA " . I don't know how to

> help him understand that PA is a serious and painful disease, not

> something that anyone would " want " to have and while perhaps an

> annoyance to him, not the way I would prefer things to be. Any

> suggestions?

>

June 29, 2004

Hi ,

What can I say? Some people are selfish and put themselves first. I think

mothers in general are used to 'seeing the whole picture' and being sensitive to

the needs of others in the family. I'm a (divorced) mum of two (16 and 13

years) and children (generally) tend to be naturally selfish, so I'm quite used

to coming third in the list. What gets to me though is when my other half tries

to get in on the act as well! I'm already playing second fiddle to two kids, I

don't need to be relegated to fourth position in the needs list by a long term

partner!

The other night my kitten was misbehaving and being a pain. Boyfriend said

" Stop him doing that. Grab the cat " . Of course, me not being the fastest thing

these days and the cat not being exactly the slowest creature in the universe, I

didn't manage to 'grab the cat'. Boyfriend said " You are SO slow! SO SLOW!

You're as slow as a.... " At that point I interrupted: " As slow as a 37 year old

with arthritis - is THAT what you're trying to say...? You've noticed. Well

done! " (Great conversation killer that one).

So in other words, I don't know what to say to you. Hubby should realise that

you're not well and take your needs into account. Maybe he hasn't yet realised

how hard PA can be, especially if you're out at work all day. If you've tried

explaining and he won't listen, maybe go on the holiday in the usual place but

really do things at your pace. If you can't make it over the sand dunes, stop

right there and say, this is as far as I can go. If you can't make it to the

beach, stay in the house with a good book and relax while he takes the kids off

for the day. After all, you'd hate to spoil his holiday. That might open his

eyes. Or not.

This time last year, we went off to Amsterdam for a few days. This was a few

months before I was finally diagnosed with PA - so I had all the pain and

stiffness and no proper drugs and we were marching all over the city, with me

being painfully slow and him moaning. When the photos were developed he said

" There isn't one of you smiling - you look so miserable all the time " . Well, I

wonder why?

It's your holiday too. If your kids grow up and their biggest complaint is that

they had to holiday in an Ocean front condo, they'll be very lucky..........

Take care.

bearsyisalady <heatherfitz@...> wrote: