Re: Scared and alone

[Guest guest]

Hi tm_upton,

Welcome to the group. This is a great place to learn

about PA, find encouragement, and even laughter.

Several people with PA have other Auto-immune

diseases... that is something I have noticed here.

I am 35 and this summer I am trying to get pregnant...

since I have had PA for a while now, I know your

fears... and I have been asking questions. I have

learned that 2/3 of pregnant women go into a remission

during their pregnancy. Futhermore, most women report

a HUGE flare AFTER giving birth! This is consistent

with what you have experienced as well.

There are so many people here, and there is so much

encouragement. You are not alone.

I recently started Enbrel. I experienced HUGE relief

right away and felt normal for the first time in my

life. I have down a couple notches since then, but I

don't have worthy complaints.

Hope you find some comfort soon.

Jody

--- tm_upton <tm_upton@...> wrote:

> Hi there, this is my introduction. Sorry if I sound

> hopeless but

> it's been rough for me lately and I know things

> could be worse so I'm

> trying to count my blessings. Here's my story,

> sorry it's so long.

> I'm a 27 year old female who had a beautiful baby

> girl in Dec. 03.

> About March 04 health problems began (Fatigue, hair

> loss, weight

> gain, muscle cramps, skin rashes, I was " puffy " and

> in pain). In the

> begining the Dr. kept telling me I had post-partum

> depression untill

> May 04 when they tested my thyroid and my TSH was at

> 87 (normal

> should be 1-2). After begining thyroid treatment I

> was still having

> tons of problems. In Dec. 04 I went to the ER

> because I couldn't

> walk, I thought I'd dislocated my hip or something.

> I finally got

> sent to a specialist in Dec. 04. He tested me for

> RA, Lupus, AIDS,

> Lymes, and so on. He diagnosed me with Psoriatic

> Arthritis. I

> started Methotrexate, Naproxen, Folic Acid, and

> Vicodin for pain. I

> had to take Vicodin every 6 hours every day for

> about 6 months before

> the pain was low enough for me to handle. The worst

> pain was in my

> hips, feet, and hands. I couldn't even hold my baby

> sometimes

> because of the pain and weakness. July 05 I started

> feeling GREAT! I

> wanted to stop all medication but my Dr. wanted me

> to wait and sure

> enough I've been having another flare-up since

> around Nov. 05. My

> inflammation levels are back up, I'm now having to

> inject my

> Methotrexate because he's increased my dose, and

> I've been having to

> take Vicodin again to function. My skin is actually

> looking better.

> I'm on INH treatment because I tested positive for

> TB and if I ever

> want to try something like Enbrel then I have to

> finish the 9 months

> of INH first. I'm so tired of being sick!! Last

> week my fingernails

> started seperating from the nail bed and I read that

> this can be from

> Psoriatic Arthritis and a Thyroid condition so I

> guess I'm stuck with

> that one. I've been concerned since both of my

> conditions are immune

> disorders that maybe I should see an Immunologist?

> I can't help but

> feel like this is all related because the on-set of

> both disorders

> were at the same time (just after giving birth). My

> husband and I

> want more kids but I don't know if I'll be able to

> stop taking my

> medication any time soon and what if another

> pregnancy makes things

> worse? I live in a very small town and there is not

> any support

> groups or anything for what I've been dealing with.

> I just feel

> alone most of the time, besides my husband I don't

> talk about all of

> this with anyone. Any advice or words of wisdom

> would be

> appriciated. Thanks, tm_upton

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi, TM! Hopefully this will be the end of the " alone " part. Even

large cities frequently have no support groups for PA, but this group

serves us all well and you will find understanding and humor to help

cope.

I'm recently diagnosed myself and I understand about the " scared "

part, too. I have to fight against worrying about what might happen

in the future and just concentrate on dealing with today's problems

today.

How is your sweet baby doing? He or she should be a little over 2

now, right? That is such a cute age. I don't have any grandchildren

yet but I just got back from watching a young friend's 2-something

year old and 7 month old for about an hour while she ran some

errands. They remind me why life is still worth living!

I hope that today is good day for you. We have thunderstorms here,

which always makes the joints worse for me. Take care and check in

often.

regards,

sherry

>

> Hi there, this is my introduction. Sorry if I sound hopeless but

> it's been rough for me lately

[Guest guest]

Hi TM,

Greetinz. Your post sounds pretty normal for this group. lol Now

you have posted you will no longer have to feel alone. There are

many of us that feel the same from time to time, especially when we

are going through a flare. Hate the disease, hate the meds, hate

our world. But if you look close enough you will find that it might

also have given you something. It has given me time. Time to get

to know myself a little more intimately, to get to know my precious

little grand-children and to give some time to others.

The fatigue and brain fog are taking their tole at the moment. I

don't half make some big mistakes and constantly embarass myself. I

suppose it is funny in some ways but most of the time I can't

remember what I did even an hour ago. Oh dear, I must go, I've just

forgot to pick my wife up from work.

Keep the light shining,

Ian.

[Editor's Note: Ian, at least you remembered you HAVE a wife, LOL. Take care,

Kathy F.]

>

> Hi there, this is my introduction. Sorry if I sound hopeless but

> it's been rough for me lately and I know things could be worse so

I'm

> trying to count my blessings. Here's my story, sorry it's so

long.

> I'm a 27 year old female who had a beautiful baby girl in Dec.

03.

> About March 04 health problems began (Fatigue, hair loss, weight

> gain, muscle cramps, skin rashes, I was " puffy " and in pain). In

the

> begining the Dr. kept telling me I had post-partum depression

untill

> May 04 when they tested my thyroid and my TSH was at 87 (normal

> should be 1-2). After begining thyroid treatment I was still

having

> tons of problems. In Dec. 04 I went to the ER because I couldn't

> walk, I thought I'd dislocated my hip or something. I finally got

> sent to a specialist in Dec. 04. He tested me for RA, Lupus,

AIDS,

> Lymes, and so on. He diagnosed me with Psoriatic Arthritis. I

> started Methotrexate, Naproxen, Folic Acid, and Vicodin for pain.

I

> had to take Vicodin every 6 hours every day for about 6 months

before

> the pain was low enough for me to handle. The worst pain was in

my

> hips, feet, and hands. I couldn't even hold my baby sometimes

> because of the pain and weakness. July 05 I started feeling

GREAT! I

> wanted to stop all medication but my Dr. wanted me to wait and

sure

> enough I've been having another flare-up since around Nov. 05. My

> inflammation levels are back up, I'm now having to inject my

> Methotrexate because he's increased my dose, and I've been having

to

> take Vicodin again to function. My skin is actually looking

better.

> I'm on INH treatment because I tested positive for TB and if I

ever

> want to try something like Enbrel then I have to finish the 9

months

> of INH first. I'm so tired of being sick!! Last week my

fingernails

> started seperating from the nail bed and I read that this can be

from

> Psoriatic Arthritis and a Thyroid condition so I guess I'm stuck

with

> that one. I've been concerned since both of my conditions are

immune

> disorders that maybe I should see an Immunologist? I can't help

but

> feel like this is all related because the on-set of both disorders

> were at the same time (just after giving birth). My husband and I

> want more kids but I don't know if I'll be able to stop taking my

> medication any time soon and what if another pregnancy makes

things

> worse? I live in a very small town and there is not any support

> groups or anything for what I've been dealing with. I just feel

> alone most of the time, besides my husband I don't talk about all

of

> this with anyone. Any advice or words of wisdom would be

> appriciated. Thanks, tm_upton

>

[Guest guest]

Well, I will try this again, my power went out and I

lost everything that I started to write you. My name

is Sharon and I am 42 yrs. I have

PA,Gout,Depression,and I had to have my thyroid taken

out in Sept.00 they found 4 spots on it cancerous, I

tested pos. for TB with the skin test and neg. with

the X-ray test so they are just watching it. I have

colorectal cancer that is in remission right now. From

what you have written you sound depressed. If you have

a PCP make an appt. and tell your doc about your

feelings, the depression everything, they can't help

you unless you tell them everything. You will be going

thru all the stages that people go thru when they find

out they have a serious condition or death in the

family first comes denial, anger depression and

finally acceptance. You will always have bad days but

you have us now to talk to. Let's count your blessings

just from your letter, You are ALIVE! You have a

husband who you can talk to, you have a beautiful

daughter, and you have found us(this group) which you

can rant and rave about how everything makes you feel.

I understand that at 27 you are at the age where you

want your life to be very active, but it can't be that

way anymore. What can help with the fatigue are those

wonderful prenatal vitamins that you took while

pregnant. Also you know your body and how much you can

stand. Watch yourself when you get tired lay down and

rest sleep when the baby does.Make sure you take good

care of your feet, wear shoes that are comfortable you

might have to get a size biggger for the swelling,(I

did). You wrote very little about yourself exccept for

your illnesss. Do you have family close by who you can

talk to? What about a best friend? Think of more

blessings than just the ones that I wrote,I am sure

you can come up with more. Find a good Rhemy which I

think you already have. Talk to your Rhemy about the

feelings that you are having, ask about having another

child, I am almost sure that you can stop taking the

meds for 9 months.I am not taking any of the meds.Just

pain meds.I don't know if you are spiritual or not but

take time everyday to thank God for what you have.I

have a nice big shoulder that you can cry on anytime,

email me I am usually online and check my messages

often. I am disabled and stay at home most of the time

my puter stays on and I have IM you can always

buzz me sharonm757 ID. Take time everyday to do

something nice for yourself. I really don't believe

that all of this came on because you had a baby, PA is

hereadity. Now the thyroid problem you can control it.

I am almost sure that didn't happen because you had a

baby. You might have started noticing your health

after you had the baby, think back you might have had

some signs before you became pregnant. Having a mate

that you can talk to I think is one of the most

wonderful things you could have. My husband left me

because I had too many problems, and I didn't know

that it was all in my head I was making everything up.

If you can't have any more children just think how

much love and attention your daughter will get it

won't have to be split with other siblings. Try to

think positive things,I know hon, it easier said than

done but you found this group and we all know exactly

how you feel when it comes to the disease of PA and we

are here for you, one of our members is a writer and

he is writing a book about PA and wants all of us to

write a little about what it is like having to live

and deal with PA everyday. This group altho I haven't

been a member very long has helped me so much. Some of

the people in this group are so wondeful with words of

encouragement that it makes me cry when I read it. You

are not alone anymore, you might be scared but you are

not alone anymore reach out everyone here loves to

help. Sharon

[Editor's Note: Wow, Sharon, thanks so much for your insights and for being

such a great group cheerleader. Kathy F.]

[Guest guest]

Let me say what others have said, " Once you are in this group, you aren't

alone. I use to think the same thing. I thought " I must be crazy, no one feels

like this EXCEPT ME. Well, guess what....there are many people that feel the

same way. We have a disease. OK now what do we do. Well, just like the number

of people in this group, we have about as many options on how to treat (notice I

said treat, not cure) this disease. Find as many web sites as you can to see

what is available. Everyone is different. Just keep pluggin' away. Don't give

up!

Now, I need some help. Yesterday, amongst the 4th's activities, my 10 year

old son said, " I really liked Mom a lot more when she was active! My heart

sank....to the lowest possible place it could go! How do I let him know that I

wish, OH HOW I WISH I could do the things I did with him just a few years ago?

He is only 10! How is he going to feel when he is 13, 14, 15? Is he going to

want me to just disappear because I am too much of an embarrassment to him?

How do I explain it to him that if I could, I would jump, play ball, dance, go

to parks, go ton walks, what ever he may want to do to be with him (which I'm

still with him, but I try to do things that we can do without too much physical

activity) but now I can't do all the things I used to do? My heart just broke

with the comment he made. I didn't let him or anyone else know how much it hurt

to hear him say that. Just smiled and went on.

So please help me with suggestions as to how I let him know I still love just

as much, but now it will be different as to how I can " play " with him? I

welcome any tips or suggestions.

Thanks,

Kate

[Editor's Note: Presumably a 10 year old also has a few hobbies that are not as

active as sports (e.g. video games, making model cars from kits, collecting

coins...) in which case you can learn to master some of these other things he

enjoys doing. If he is in organized sports (Little League, soccer), you should

attend as many games and practices as you can and you should talk with him about

the league/games/players as often as you can. Learn all his teammates' names.

Learn all you can about the sport. Go with him to a pro or semi pro game of a

sport he enjoys watching but first study the batting averages, etc of his

favorite players. Learn the words to his favorite songs. Buy a teen magazine

and learn all the " dirt " about his favorite bands but don't tell him how you

know this stuff. If he likes to read, read the same books he is reading and

talk to him about the plot and characters. On a rainy day, set up a tent inside

the house using old sheets thrown over the dining room table and camp inside the

tent with him - pretend you are really camping and have meals inside the tent.

If it's too painful to sleep in the tent, let him sleep in there in there but

tell him a ghost story. Undertake some volunteer work with your son so that he

learns to be more understanding of others. Do NOT dump your problems on him or

complain to him, but teach him that there are some people who can do things that

others cannot do. There is so much more to a child than their physical activity

so just make sure you tap into all the other interesting facets of your son.

Kathy F.]

[Guest guest]

Hi TM-

I usually like to read and not say much- But, I have to reply to

you. I was diagnosed w/ PA after my second baby. My story is a lot

like yours- Im young....and early in my pregnancy my ankles hurt so

bad every morning I thought I would die. I blamed it on gaining

weight,being flat footed and not use to weight. When My son was born

within 1 week my P was so bad it covered my entire trunk ( I had

never had it with the exceptiong of my scalp- half dollar size) Two

weeks after the birth my thyroid went out - totally to the point Im

solely on medication for it. I like you hurt in my feet hands,

wrists and elbows. I pray all the time to be healed or go into

remission. I have tried not to have to go on the hard meds. I take

the highest dose of IBPROFEN- Vicoden on days I can't walk at all,

fish oil, Vitamines, I try to exercise...and I go to a Acupuncturist

and he does everything from electric shock to cupping. The PA comes

and goes in waves. I like you do blame my second pregnancy. In my

mind for some reason being pregnant the second time sent my body

into shock and defense mode. After Labour it began its battle. Also

Like you I scared to death...here I am in my early thirties and this

bad....what in the world will I be like in my 40s? wheelchair???

Most of the time I feel angry and bitter- I know it doesn't help-

but at the same time I feel cheated. My friends and family have a

hard time understanding something they really don't see. To them I

look young and beautiful- I am Tall and thin...and seem

healthy..But, on the inside Im in the same turmoil you are feeling.

At 27 you are so very young... You have come to the right place..--

If anything you'll learn your not alone out there...and maybe you

can find some new therapy or learn something from one of these guys

that may work for you and keep you in remission.I have two young

boys 18 months and 3 and a half..My husband is a pilot and is home

maybe 2 days a week.3 days is Im really lucky. The rest of the time

I am here 2500 hundred miles aways from any family...and maybe 2

really close friends. And on top of that I live in Seattle which

isn't known for its warm, sunny climate...in fact I have come to

believe this cold rainy mess may make my bones hurt more.

I pray for you as I do all with this disease...I hope they find

something to slow it down soon. Good Luck and feel freee to email

me...Sounds like we have the same stories.

Tricia

[Editor's Note: It sounds like you have been chasing a lot of " cures " that

don't work, but you don't say anything about taking medications that work for

many people. Maybe it's time to try something that might help you. When the

ravages of PA leave you more scared than the risk of damage from treatments that

can work, you know it's time to try real medications. Kathy F.]

, " tm_upton " <tm_upton@...> wrote:

>

> Hi there, this is my introduction. Sorry if I sound hopeless but

> it's been rough for me lately and I know things could be worse so

I'm

> trying to count my blessings. Here's my story, sorry it's so

long.

> I'm a 27 year old female who had a beautiful baby girl in Dec.

03.

> About March 04 health problems began (Fatigue, hair loss, weight

> gain, muscle cramps, skin rashes, I was " puffy " and in pain). In

the

> begining the Dr. kept telling me I had post-partum depression

untill

> May 04 when they tested my thyroid and my TSH was at 87 (normal

> should be 1-2). After begining thyroid treatment I was still

having

> tons of problems. In Dec. 04 I went to the ER because I couldn't

> walk, I thought I'd dislocated my hip or something. I finally got

> sent to a specialist in Dec. 04. He tested me for RA, Lupus,

AIDS,

> Lymes, and so on. He diagnosed me with Psoriatic Arthritis. I

> started Methotrexate, Naproxen, Folic Acid, and Vicodin for pain.

I

> had to take Vicodin every 6 hours every day for about 6 months

before

> the pain was low enough for me to handle. The worst pain was in

my

> hips, feet, and hands. I couldn't even hold my baby sometimes

> because of the pain and weakness. July 05 I started feeling

GREAT! I

> wanted to stop all medication but my Dr. wanted me to wait and

sure

> enough I've been having another flare-up since around Nov. 05. My

> inflammation levels are back up, I'm now having to inject my

> Methotrexate because he's increased my dose, and I've been having

to

> take Vicodin again to function. My skin is actually looking

better.

> I'm on INH treatment because I tested positive for TB and if I

ever

> want to try something like Enbrel then I have to finish the 9

months

> of INH first. I'm so tired of being sick!! Last week my

fingernails

> started seperating from the nail bed and I read that this can be

from

> Psoriatic Arthritis and a Thyroid condition so I guess I'm stuck

with

> that one. I've been concerned since both of my conditions are

immune

> disorders that maybe I should see an Immunologist? I can't help

but

> feel like this is all related because the on-set of both disorders

> were at the same time (just after giving birth). My husband and I

> want more kids but I don't know if I'll be able to stop taking my

> medication any time soon and what if another pregnancy makes

things

> worse? I live in a very small town and there is not any support

> groups or anything for what I've been dealing with. I just feel

> alone most of the time, besides my husband I don't talk about all

of

> this with anyone. Any advice or words of wisdom would be

> appriciated. Thanks, tm_upton

>

[Guest guest]

Hi

I tried to email you privately but you email is disabled(only telling

you this in case you did want it enabled)

I also went throuh similar events tht you are now experiencing

I feel that you really need a good rheumatoligist and if you ask here in

the group you will probably find one in your area

I would also ask your doctor for enbrel, humira,etc. since you are still

in so much pain and having flares

These drugs have brought this disease to its knees and will hopefully

help you to enjoy your baby and family more.

I know it is hard to deal with at your age but many have gone on and had

more babies with the right treatment and a good doctor for support.

I would really focus now on finding a good doctor and getting you in a

place where you feel more in control of your life. The intermet and this

group are here to educate and support you. We all know the pain you are

feeling

Do me a big favor and take care of you and give that baby a big hug from

me []

June

---. Any advice or words of wisdom would be

> appriciated. Thanks, tm_upton

>

[Guest guest]

I hope this finds you feeling better-I personally was

really active before PA-tennis professional, teacher

and coach-while i am currently having a good period

and can more or less pursue those activities just at a

level of about 20% of before. I hope you have sat down

and really explained tp your child what is going on.

Ten year olds can be really empathetic when given the

chance, bring him into the loop and ask for his

suggestions as to what he thinks you can do together.

make it decision between you all you might be

surprised about what transpires

god bless

greg

---

[Guest guest]

Whew...you have alot to deal with Honey. Your questions and concerns are valid

ones. As far as how all of this may relate to the birth of your daughter (little

girls are amazing...mine is 11 now), I was in remission during my pregnancy and

I have been told that is common. I never felt better than when I was pregnant. I

had not been diagnosed yet...that was to come 9 years later but it was a great

time in my life. After was born however, things DID get worse. I hope

that you and your husband are talking together about this even if you are not

sharing it with others. Are you not telling others because you don't want to

" burden " them or talk about uncomfortable things? I was that way. Was. Last year

I hardly spoke to anyone and was very reclusive. My daughter has special needs

and they were spiraling out of control until she ended up in a hospital so I had

alot of bad news and I got tired of repeating it and just figured people got

tired of hearing it so I did not give

them a chance until this year. I snapped out if, reached out to my friends and

what little family I have left, got involved with this wonderful group here and

my life has changed. I warn you, you'll discover that some people you thought

were friends, weren't. But if you are like me, you'll be blown away to find that

you had friends you did not know you had. Asking for help is the hardest thing

to do sometimes. My advise is to brave it out, give it a try. I took my 6th

Enbrel injection yesterday and as of last week am walking normally now instead

of like a constipated monkey. I have not worked all year due to my PA...first

time since I was 16 and I am 45. I went out looking for a job last week and the

one who hired me was the one I spilled my guts to. She told me at first that she

had just hired someone so I figured I did not have to make myself look like the

picture of health with a marvelous life anymore and I answered her question of

" Where have you been all year? " . Low

and Behold the woman was impressed that I had not given up and that night I got

an email inviting me to work for her. So ya see.....telling people is not so

bad. You will get great support on here. We will keep you from being so alone

and hopefully aleve some of your fears too. Welcome to our little piece of the

world. -Betsy

Betsy Jack itsbetsy@...

[Guest guest]

i wanted to reply to your letter but I wasn " t sure what to say . I got pa

when my children were 8 and 10 years old . i was 38 years old . I just got worse

and worse over the years . But now I am 56 . I have raised my kids . I

wont go into all that . i can walk better now than I have in 15 years . Yes I

have had 3 hip replcements [right hip twice . Thanks to all the new medicines .

and yes... you have to take risks and try new stuff. thanks to all the new

medicines Iam doing well . I have severe crippling on my hands and am not

totally pain free . BUT i am better and comfortable most of the tome I have been

on everything . now I am on enbrel and mobic . see if you can get one of the

new meds to try . If you are suffering from post partum depression then get

help and get medication to help you . I do hate typing cause my hands hurt so

Ill say we are all here for you and are listening . even those who are not

replying are reading ,listening and thinking of you . sincerely cathy from ma

[Guest guest]

Kathy....good work! I agree with your great advise and suggestions. And Kate, my

daughter is extremely active and has special needs so it's not easy to explain

thing to her much of the time. And yet...kids can be very perceptive. Let this

boy know that there are many things that you CAN do. Also let him know that

there is more to you than what he sees. This can be a great time to get to know

each other....on the inside....explore the innermost areas of your personalities

with each other. Does he like jokes? You can joke all day. Go after some of the

things that Kathy suggested. Great ideas! Many boys see Mom as the " Soccer Mom "

and not as someone who might have feelings. We just do all of the stuff for them

so that's what we become for our kids...the doer. Of course you know that what

he said is not what he really meant....he probably meant that he misses doing

the things he used to do with you. Saying he liked the active Mom better was

just an example of a 10 year old

not knowing how to express what he really feels yet. He just does not know

which words to use.....yet. But you can gently teach him. This is a great

opportunity for you to see some things in him that you might not have the time

to see when you are out on the field with him. You'll notice things on the

sidelines that you never saw before. Make sure you are smiling and cheering from

your new vantage point rather than being sad that you are there. He will pick up

on it ya know. I am trying to be so careful how I word all of this to you

because I don't know you...I don't know that you are not sitting there in the

stands grinning from ear to ear already. So please forgive me if I'm stepping

over the line. I keep telling all of these moms on here what I truly believe

and that is that we get to be REAL moms now. Now we have to make our kids fall

in love with who we really are on the inside instead of being in love with what

we can do for them. Now you are going to get to know

your children in ways you never imagined and you'll have closer, fuller

relationships than you would have if you'd been the active mom. If we all play

this right, I can picture us in our older years surrounded by our best

friends....our adoring children who have seen us rise above this stinkin PA.

That will mean much more to them than if we had been the moms their friends

had......normal, everyday, cookie cutter, just like everyone else's mom moms.

Not us. We get to be real Moms now. Say it with me ladies!!!! Ok. I'm done.

-Betz

Betsy Jack itsbetsy@...

[Guest guest]

Betz wrote:

" ....our adoring children who have seen us rise above this stinkin PA. That

will mean much more to them than if we had been the moms their friends

had......normal, everyday, cookie cutter, just like everyone else's mom moms.

Not us. We get to be real Moms now. Say it with me ladies!!!! Ok. I'm done.

-Betz "

Very moving Betz!!! You should write that book with .

Have you started your new job? Take care and thanks for your emails.

Betsy Jack <itsbetsy@...> wrote:

Kathy....good work! I agree with your great advise and suggestions.

And Kate, my daughter is extremely active and has special needs so it's not easy

to explain thing to her much of the time. And yet...kids can be very perceptive.

Let this boy know that there are many things that you CAN do. Also let him know

that there is more to you than what he sees. This can be a great time to get to

know each other....on the inside....explore the innermost areas of your

personalities with each other. Does he like jokes? You can joke all day. Go

after some of the things that Kathy suggested. Great ideas! Many boys see Mom as

the " Soccer Mom " and not as someone who might have feelings. We just do all of

the stuff for them so that's what we become for our kids...the doer. Of course

you know that what he said is not what he really meant....he probably meant that

he misses doing the things he used to do with you. Saying he liked the active

Mom better was just an example of a 10

year old

not knowing how to express what he really feels yet. He just does not know which

words to use.....yet. But you can gently teach him. This is a great opportunity

for you to see some things in him that you might not have the time to see when

you are out on the field with him. You'll notice things on the sidelines that

you never saw before. Make sure you are smiling and cheering from your new

vantage point rather than being sad that you are there. He will pick up on it ya

know. I am trying to be so careful how I word all of this to you because I don't

know you...I don't know that you are not sitting there in the stands grinning

from ear to ear already. So please forgive me if I'm stepping over the line. I

keep telling all of these moms on here what I truly believe and that is that we

get to be REAL moms now. Now we have to make our kids fall in love with who we

really are on the inside instead of being in love with what we can do for them.

Now you are going to get to know

your children in ways you never imagined and you'll have closer, fuller

relationships than you would have if you'd been the active mom. If we all play

this right, I can picture us in our older years surrounded by our best

friends....our adoring children who have seen us rise above this stinkin PA.

That will mean much more to them than if we had been the moms their friends

had......normal, everyday, cookie cutter, just like everyone else's mom moms.

Not us. We get to be real Moms now. Say it with me ladies!!!! Ok. I'm done.

-Betz

Betsy Jack itsbetsy@...

---------------------------------

Want to be your own boss? Learn how on Small Business.

[Guest guest]

Weehooo!!! Go Sharon!!! Listen to her tm... She knows whence she

speaks... or something like that... Anyway, there are lots of people

to talk to. One thing I noticed that helpedf me was being able to

help others... I feel better about my purpose here when someone asks

a question and I feel I can help them. It makes me feel worthwhile...

just wait... it will slowly come around. In the mean time ask

questions... they help too...

michael (still lookin for that thordinkin thing...)

>

> Well, I will try this again, my power went out and I

> lost everything that I started to write you. My name

> is Sharon and I am 42 yrs. I have

[Guest guest]

I agree with Kathy... I have 2 daughters that I used to be active

with, before I had my legs amputated... We still have fun. I do a lot

of what Kathy suggests. But one thing you need to do is very simple.

LISTEN to him. Ask him what he is interested in. Then brainstorm with

him what you two can do together to have fun. But communicate so he

knows that you care... Maybe boys are different than girls in this

respect, but this has worked out well for me, and I am mostly house

bound... Try it... if it don't work, try something else. Just show

him he is what matters, not what you do...

michael (and the elusive thordinkin... the girls have him waiting at

home...) lucky me...

>

> Let me say what others have said, " Once you are in this group, you

aren't alone. I use to think the same thing. I thought " I must be

crazy, no one feels like this EXCEPT ME. Well, guess what....there

are many people that feel the same way. We have a disease. OK now

what do we do. Well, just like the number of people in this group,

we have about as many options on how to treat (notice I said treat,

not cure) this disease. Find as many web sites as you can to see

what is available. Everyone is different. Just keep pluggin' away.

Don't give up!

>

> Now, I need some help. Yesterday, amongst the 4th's activities,

my 10 year old son said, " I really liked Mom a lot more when she was

active! My heart sank....to the lowest possible place it could go!

How do I let him know that I wish, OH HOW I WISH I could do the

things I did with him just a few years ago? He is only 10! How is

he going to feel when he is 13, 14, 15? Is he going to want me to

just disappear because I am too much of an embarrassment to him?

>

> How do I explain it to him that if I could, I would jump, play

ball, dance, go to parks, go ton walks, what ever he may want to do

to be with him (which I'm still with him, but I try to do things that

we can do without too much physical activity) but now I can't do all

the things I used to do? My heart just broke with the comment he

made. I didn't let him or anyone else know how much it hurt to hear

him say that. Just smiled and went on.

>

> So please help me with suggestions as to how I let him know I

still love just as much, but now it will be different as to how I

can " play " with him? I welcome any tips or suggestions.

>

> Thanks,

>

> Kate

>

>

> [Editor's Note: Presumably a 10 year old also has a few hobbies

that are not as active as sports (e.g. video games, making model cars

from kits, collecting coins...) in which case you can learn to master

some of these other things he enjoys doing. If he is in organized

sports (Little League, soccer), you should attend as many games and

practices as you can and you should talk with him about the

league/games/players as often as you can. Learn all his teammates'

names. Learn all you can about the sport. Go with him to a pro or

semi pro game of a sport he enjoys watching but first study the

batting averages, etc of his favorite players. Learn the words to his

favorite songs. Buy a teen magazine and learn all the " dirt " about

his favorite bands but don't tell him how you know this stuff. If he

likes to read, read the same books he is reading and talk to him

about the plot and characters. On a rainy day, set up a tent inside

the house using old sheets thrown over the dining room table and camp

inside the tent with him - pretend you are really camping and have

meals inside the tent. If it's too painful to sleep in the tent, let

him sleep in there in there but tell him a ghost story. Undertake

some volunteer work with your son so that he learns to be more

understanding of others. Do NOT dump your problems on him or

complain to him, but teach him that there are some people who can do

things that others cannot do. There is so much more to a child than

their physical activity so just make sure you tap into all the other

interesting facets of your son. Kathy F.]

>

[Guest guest]

In a message dated 05/07/2006 11:23:21 GMT Daylight Time, tm_upton@...

writes:

I just feel

alone most of the time, besides my husband I don't talk about all of

this with anyone.

Hi Tara,

Welcome to the group. I'm glad you found us and sorry that you have been

having a rough time of it. I hope that since you joined us you don't feel so

alone

now. This is a great group for giving help, advice and support. So use us

when you need to vent or ask questions. Anything.

Take care,