Kim

[Guest guest]

Hi ,

I'm so sorry to hear that Rob is still feeling poorly. I'm glad he was able to get at least some temporary relief from a soak in the hot tub but we'll be sending positive thoughts and hoping that he's doing and feeling better soon. I'm glad it wasn't strep, at least. If it's any comfort to him, Josh still has some coughing and sniffles going on, too.

Best wishes, Georgina

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

From: snooksmama@... Kim: Thanks for the info. I do think that you can download a newer version of Windows fairly easily from the Microsoft site. Anyway, that is a very interesting dilemma...the hypermobility versus the JRA. Rob is having another bad day today. He woke up with a sore throat, off to the ped and strep screen negative. Probably viral. His back is giving him fits today...he insisted on getting in our hot tub outside though its almost 90! I only would let him stay in for 15 minutes and made him drink water the whole time! But he said it felt wonderful.Anyway, best wishes to you and Logan. Hope that rain doesn't spoil his feeling good! and Rob 13 jas

[Guest guest]

Thanks for the reply SuzyQ,

I know my post sounded very " anxious " I just thought I would tell my

story in case others have experienced something similiar. Any help

and any hope is always great.

My doctor prescribed 5mg-10mg of compounded hydrocortisone 2x per day

but I couldn't tolerate it at all...more insomnia, anxiety, heart

palps. ... so maybe the cream would be better. I have a phone

appointment with him today so I will mention it. Has anyone heard of

cortisone causing depression or had any experience with it? It seems

so tricky.

When I talk to my doc today I also am going to ask him to do my sex

hormones, adrenals, and tests for candida today. I have been planning

on having those done for a couple of weeks so hopefully this may help

as I know there are all low! Wish me luck. I also know I have candida

really bad and have been unable to get rid of it for over 1 1/2 yrs

now...so I know thats probably not helping anything. And I will talk

to my doc about changing my diet. Right now I do crave carbs and

sugar. I have done very strict candida diets in the past so maybe its

time for another one.

I have also started taking some important thyroid vitamins, minerals

etc about 2 weeks ago. I got the suggestions off of Shoman's

website. So I am taking 200mcg Selenium, also Zinc, Iodine(just a

little bit), amino acids, vit. A and D, EFA's, Vit. C, etc... so

hopefully this will help if theres a conversion problem which I

suspect.

You mentioned that I may be someone that cannot take Armour because

of the T3 in it and that synthetic might be better. I am not sure

what you meant by this? Is T3 sometimes better tolerated in synthetic

form? Because I know that I need T3... my levels are always low and

Dr. Arem (author: The Thyroid Solution) and other thyroid docs talk

about it as a natural anti-depressant so I know its very important to

me. Anyone else have any experience or info on this?

Thanks again. Wishing great health and healing to all of us!

---Kim

> << 2. My doctor has me on Armour 135mg/day split & Levoxyl 50mg/day

for

> hypo and he has tried to put me on hydrocortisone for my adrenals

> before but I had lots of trouble tolerating it...anxiety/insomnia

so

> I had to stop. My adrenals are low by his testing so I know I need

> something. (I can't handle any stress...and have lots of the

> symptoms...mostly emotional, low b.p., insomnia, etc) Has anyone

had

> trouble tolerating hydrocortisone and what did you do about it?>>

>

> SQ: What doses is he prescribing? Is it the smallest dose

possible -

> sometimes creams are better, heck you can even get Cortaid OTC

which is probably the

> smallest dosage and in cream form. I don't know.

>

> You may be one of those who can't take the Armour, because of the

T3 - OR,

> some people do better on the synthetic hormones. It looks like you

have a good

> mix of T4 and T3 now.

>

> Dietary wise - Are you taking Selenium or other vitamins or

minerals that

> will support the thyroid and adrenals? What are you eating daily?

What about

> caffeine, coffee, tea, chocolate, sugar, etc.?

>

> How about stress in your life - is there a lot right now, love

life, family

> life, job stress? Have you had all hormonal levels checked -

adrenals,

> thyroid and sex hormones?

>

> Your post certainly does have a sense of 'stressing out'. I can

almost feel

> your anxiety just by reading it. Have you tried yoga or deep

breathing,

> relaxation techniques?

>

> SuzyQ

[Guest guest]

Kim, I am taking cortef and at first had a hard time figuring out dosing and

timing. I finally setled on 5mg 4X a day at 8a, 11, 2p, 5. Taking it 2X a

day could be the problem. I like consistent dose and consistent timing.

Also you might need DHEA with it. I take 50mg 7-keto, also love my

compounded hormones tri-est and progesterone.

Gracia

> Thanks for the reply SuzyQ,

>

> I know my post sounded very " anxious " I just thought I would tell my

> story in case others have experienced something similiar. Any help

> and any hope is always great.

>

> My doctor prescribed 5mg-10mg of compounded hydrocortisone 2x per day

> but I couldn't tolerate it at all...more insomnia, anxiety, heart

> palps. ... so maybe the cream would be better. I have a phone

> appointment with him today so I will mention it. Has anyone heard of

> cortisone causing depression or had any experience with it? It seems

> so tricky.

>

> When I talk to my doc today I also am going to ask him to do my sex

> hormones, adrenals, and tests for candida today.

[Guest guest]

Hi,

Thank you for your responses.

Kim

[Guest guest]

I am worried about you!!! please get back to us on how you are

feeling--we all know what you are going through when the

thyroid/adreanl crashes---and or you not absorbing your meds

correctly or maybe they are not agreeing with you--it happens to many

out there. My daughter has crashed twice when she stopped taking her

stuff--and it's not good--you become very depressed very fast---

So you must get some correct hormone in you--I hope you were able to

buy some today. Getting balanced is the key to all of this and

finding the right hormone and the right amount is not easy at all to

do, and then staying at the right amount throughout the day.

Must always have a back-up plan--with meds that you can use in case

this happens again.

My daughter has her adrenal and thyroid glandulars always with her--

she knows which one she needs if she feels that coming down hard

feeling you get when your temp. falls too low and for her ---blood

pressure drops too much.

It's when the stress in your life can't keep up with the hormone you

are taking and you have to get more of it---unless you are going

through the opposite--with sweats, increase BP, high pulse rate---

this means too much hormone--and in that case---food and lots of

water ASAP.

If you can't calm down get to the hospital---you don't want to have a

heart attack---

M knows what all the side effects are and what to watch out for--

Stress can even bring some of these on---for her it's testing time at

school that makes her nuts.

Lots of extra vitamins--sleep--walking can help. And make sure you

take your pills at the correct time.

Let us know how you are doing?? We are all worried about you!!!! tina

> > TSH = 5.05

> > Med=Levoxyl 25

> > Symptoms= painful achey joints, anxiety, 0 weight loss even

though

> strict diet, dizziness, crying, depression, excess worrying,

> insomnia, very tired to the point of staying in bed most every day,

> exercize makes me weaker, IC (bladder disease) with fibro and CHS?,

> IBS, panaphobia, migraines, feelings of wanting to die. 27 years old

> >

> > 4 days of 1/4 pill and I felt no difference..3 days on half a

pill

> I felt very weird. I felt a lil happy, very forgetful (which could

be

> a good thing), I am a very quiet shy person and i was cussing

loudly

> all day, heck i was pacing the hsoue and singing most of the

> morning... sweated a bit when i was pacing. It was all just very

very

> weird nad not like me. Last night I was dead tired and had a pacick

> attack. I spent hours shaking and diggin my nails into my man. It

was

> horrible. I wanted to die. My head was kinda flakey... like i

wanted

> to write this letter but just couldn't. I was very scared. I didnt

> take a half today. My period cramps were gone completely tho but I

> ahve a feelign today they will return. I just don't know what to do

> and I don't trust dr's. I ahve given them a billion and one chances

> to help me and they fail to even care. Is there something natural I

> could try? What should I do? I feel like I am losing my mind. I

can't

> live like this oh and since being on this levoxyl for a week I

> havent lost any weight. im so bummed

> >

> >

[Guest guest]

Hi Kim, Sweetie you are really having it rough right now and I'm so sorry. All I

can tell you is I've been there. I remember showing up at my endo's office

without an appt. I felt so bad, was crying and crying, nervous, upset, anxious,

depressed. I had just seen him for the first time about 3 days prior I think.

I was just scared out of my mind and couldn't calm down. Anyway, the

receptionist took me back to an office and my doctor saw me within like 5

minutes. He patted my hand, listened, answered my questions, and put my mind at

ease.

This endo has his good points and bad points. I will say though that he did

treat me right.

I would high recommend that you either just show up at your doctor's office or

call and tell them you need to be soon immediately.

If it's during the weekend or at night you can either go to the ER or call your

doctor's office. If it's an emergency, they will page or doctor. If your doc is

out of town or something, they will page whoever is covering for him/her.

Someone can help you.

This disease plays havoc with our emotions and bodies, and it can be really

overwhelming. Hang in there kiddo. I know it's not easy. Just know we care about

you here. You're not alone.

In the meantime, please try to see your doc as soon as possible.

Keep in touch with us, okay.

{{{{Hugs,}}} sheila

Kim <kckim@...> wrote:

TSH = 5.05

Med=Levoxyl 25

Symptoms= painful achey joints, anxiety, 0 weight loss even though strict diet,

dizziness, crying, depression, excess worrying, insomnia, very tired to the

point of staying in bed most every day, exercize makes me weaker, IC (bladder

disease) with fibro and CHS?, IBS, panaphobia, migraines, feelings of wanting to

die. 27 years old

4 days of 1/4 pill and I felt no difference..3 days on half a pill I felt very

weird. I felt a lil happy, very forgetful (which could be a good thing), I am a

very quiet shy person and i was cussing loudly all day, heck i was pacing the

hsoue and singing most of the morning... sweated a bit when i was pacing. It was

all just very very weird nad not like me. Last night I was dead tired and had a

pacick attack. I spent hours shaking and diggin my nails into my man. It was

horrible. I wanted to die. My head was kinda flakey... like i wanted to write

this letter but just couldn't. I was very scared. I didnt take a half today. My

period cramps were gone completely tho but I ahve a feelign today they will

return. I just don't know what to do and I don't trust dr's. I ahve given them a

billion and one chances to help me and they fail to even care. Is there

something natural I could try? What should I do? I feel like I am losing my

mind. I can't live like this oh and since being on this

levoxyl for a week I havent lost any weight. im so bummed

[Guest guest]

hi kim,

I agree with Tina that you really need a new doctor. You need someone to help

you be able to function and feel good. You've been dealing with this for so long

now and I know you feel terrible.

I know it's not the same situation, but when I was anorexic and bulemic, I could

not find one doctor or therapist who could help me. Medicines didn't help. Group

therapy didn't help. Individual therapy didn't help. Hospitalization didn't

help. Talking to rabbi's and clergy didn't help. Nothing at all helped me.

I thought I was going to die.

I remember telling my psychiatrist and therapist that I was just so depressed I

just didn't care if I died. I was begging them to help me find a way to care

again. I had absolutely no hope. I was so overwhelmed and exhausted. I thought

maybe a different therapist or doc might be able to help, but I didn't have the

will or energy to even try to look for a new doctor or therapist.

I just really needed someone to help me. I was all alone. I needed someone to

call around and make appointments for me. I was in school and working 2 or 3

jobs and it took all my energy to do that. and people just thought I didn't need

help I guess. I really didn't have anyone I could ask.

All I know is I was coping the best I could. I couldn't handle anything else

besides school and work. You wouldn't think making a few phone calls would be

too much, but it was too much for me.

I just want you to know if there's anything I can do to help, let me know.

If you are too tired and overwhelmed like I was to even look for a doctor, let

me know. I will be happy to help you find one. just tell me what city you live

in.

If there's anything else you need, please know that you can ask.

{{{Big Hug}}}, Sheila

tina83862 <tina83862@...> wrote:

kim scared is not living--you can't live in bed Honey!!! You must get

a new doctor--or read all this stuff and try something---do you think

it will make you worse than you already are??? NO--- You must take

vitamins and you must get on medicine--any kind at this point so you

can start to think straight.

Once you think straight you can understand the info more.

Once my daughter began to feel better she could figure things out for

herself. She is in college ---a very tough one and she is still doing

it--so if I can keep her in school--we here can get you out of

bed!!!!!

tina

> lol iwas lookign at the website and thought man i casnt even read

this it

> looks french.. well it was french.. okokok illr ead it i got my

thyrodine..

> i ahd a bad reaction to levoxyl.. im so tired.. im scared to try the

> thyodine... ugh gotta go back to bed I HATE BED

> isocort info

> > >

> > >

> > > > Importance of Adrenal Function

> > > > The Adrenals are two small endocrine glands, whose location is

> > > > directly above each of the kidneys. The proper functioning of

these

> > > > glands is essential to our overall health and sense of well-

being.

> > > > They are of primary concern in matters of energy production,

stamina,

> > > > blood sugar regulation, emotional balance, ability to cope

with

> > > > stress, thyroid activity (indirect effect on metabolic rate),

> > > > sensitivity to allergens (allergy producing substances) and

the

> > > > regulation of inflammatory processes.

> > > >

> > > > Fatigue

> > > > Many people complain of fatigue as a primary symptom, often

> > > > complicated by other health concerns. When the attention is

focused

> > > > to the endocrine system in fatigued individuals, eight times

out of

> > > > ten the signs and symptoms are a result of insufficient

adrenal

> > > > reserves. In simple terms, weak or tired adrenal glands. In

most

> > > > cases this condition develops gradually, due to a host of

factors.

> > > >

> > > > Causes of Adrenal Depletion

> > > > Excessive long term stress, insufficient rest (optimal adrenal

> > > > function demands a relatively early bed time, so getting to

sleep by

> > > > ten o clock is critical for their restoration) insufficient

> > > > consumption of protein, insufficient consumption of vitamin C,

> > > > overuse of caffeine, sugar and other stimulants, long term or

> > > > frequent use of Canabis, history of Cocaine or Amphetamine

abuse,

> > > > chronic illness or congenital adrenal insufficiency.

> > > > Of the above, the most common causes of adrenal insufficiency

by far

> > > > are excessive stress, over consumption of stimulants and late

bedtime.

> > > >

> > > > Iso Cort Is Unique

> > > > Unlike all other adrenal support remedies available today,

Iso Cort

> > > > is the only one that provides a standardized dose of the

adreno-

> > > > cortical substance (Cortisol) required for restoration of

healthy

> > > > adrenal function. In order to bring the adrenals back into a

state of

> > > > optimal functionality, it is critical to supply the body with

> > > > regulated doses of this substance (considerably less than

unassisted

> > > > healthy adrenals would produce). Just enough is required to

provide

> > > > gentle support while the glands rebuild themselves. Using

greater

> > > > amounts would make the glands lazy and counteract the healing

> > > > process. It is therefore imperative that the dosage be stable

and

> > > > reliable so as to avoid a see-saw effect. This can

unfortunately not

> > > > be accomplished by the protomorphogenic or unrefined products

> > > > available in most natural food stores or through most natural

healing

> > > > practitioners, because such unrefined adrenal supplements do

not

> > > > deliver an exact concentration of Cortisol per tablet or

capsule.

> > > >

> > > > Cure

> > > > Returning the adrenal function back to a healthy state may

take

> > > > anywhere from 6 to 18 months depending on the individual

condition

> > > > and degree of commitment to the healing process. The rewards

are

> > > > many. Allergic persons in most cases become much less

sensitive to

> > > > allergens, those with chronic inflammatory complaints improve

> > > > greatly, fatigued persons return to more reliable levels of

energy

> > > > and stamina.

> > > > Significant improvement can usually be felt within 3-21 days

after

> > > > initiating regular use of Iso Cort as directed. In most cases

persons

> > > > bothered with constant fatigue or afternoon drowsiness are

able to be

> > > > alert and productive for the entire day.

> > > >

> > > > TO ENHANCE THIS SUPPLEMENT'S HEALING POTENTIAL: Avoid all

stimulants

> > > > such as coffee or other caffeine containing beverages (if it

is

> > > > difficult for you to discontinue drinking coffee all at once,

at

> > > > least begin to wean yourself slowly, by reducing your intake

by one

> > > > half during the first week, and continue cutting back by one

half

> > > > with each continuing week. This should take care of any

withdrawal

> > > > symptoms). Also, avoid white sugar as well as white flour

containing

> > > > products. If you are not eating much in the way of protein on

a daily

> > > > basis, add more protein rich foods to every meal. Organically

raised

> > > > red meat, liver and eggs are all very helpful in restoring

adrenal

> > > > functionality. Also be sure to take at least 2,000 mg of

Vitamin-C

> > > > every morning and another 1,000 mg with lunch. Never skip

breakfast,

> > > > eat 5 to 6 times daily (small portions) to maintain stable

blood

> > > > sugar levels and get to sleep by ten o clock.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

the digestive enzymes helped for two weeks and then stopped

im just a lost cause i prob have cancer or something

kim

> Kim--this molo-cure has helped two people I know--one with severe

> diverticulits and my hubby has colon issues.

>

> I think you should write to them send them your letter and beg them

> to help you out of their kindness of their hearts--tell them you are

> on a hypo site and many use their products but you can't afford to

> try them and see if they could send you a bottle (the bottle cost

> $170)

>

> my hubby took 6 a day at first and is now down to 2 a day and from

> the very first day he stopped bleeding. He gets like ulcers in his

> colon---

>

> and my other friend Jim swears by this stuff.

>

> they both also take digestive enzymes now that they have healed their

> digestive problems.

>

> and will only need more molo-cure if their conditions come back but

> so far so good!!!!!

>

> I know armour would help you as well---and you did try thyodine

> didn't you?? my sister takes thyodine and she is doing great on only

> two pills a day.

>

> you have to heal your stomach/bladder--and for sure no gluten until

> you know what is going on.

>

> If you can beg your doctor for armour do so tell them you must try

> something!!!!! what more could hurt??? that would at least help with

> the thyroid conditions.

>

> this molo-cure is the only thing I know that will help--it coats the

> entire digestive system so the food does not do damage to the tissues.

>

> think about it and let us know what else we can do to try and help

> you??? Maybe we could write a letter to your doctor and beg him for

> the armour---letters from those that have had great success--that

> might help you when you go to visit them again?????

>

>

> tina

>

>

>

>

[Guest guest]

lol ty:)

kim

> Consensus Development Conference *****

>

>

> CSA is

> " Celiacs Helping Celiacs "

>

>

>

>

> I would really look into these sites because even though we have some

> past info on this, I can't remember it all either---I am liking this

> abbrevation----WBRO this could really help----no wheat, barley, rye

> or oats----when you are shopping in the stores!!!!

>

>

>

> http://www.csaceliacs.org/#

>

>

>

>

>

> " No WBRO " is the Way to Go!

>

> (That's No Wheat, Barley, Rye, or Oats*)

>

> CSA is a member-based, 501©(3) non-profit support organization

> dedicated to helping individuals with celiac disease (CD) and

> dermatitis herpetiformis (DH) and their families worldwide through

> information, education and research.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Kim how are you doing these days???? you sound a lot better!!!!

> now i ahve that image stuck in my head dear god that sounds aweful

>

>

>

[Guest guest]

GOOD EVENING EVERYONE,

JUST THOUGHT I WOULD LET YOU KNOW KIM FINALLY WENT TO THE ER LAST

NIGHT. HER NECK WAS SWOLLEN AND SHE WAS IN SEVERE PAIN, TO THE

POINT OF NAUSEA. GOT NO PAIN PILL, IMAGINE THAT, BUT GOT THE

BASELINE XRAY SHE WANTED HER DR TO ORDER FOR HER. THANKFULLY, IT

WAS NEG.

THE ER DR TREATED HER WITH SOME DIGNITY AND GAVE HER FLEXIRIL FOR

THE MUSCLE SPAMS.

JUST THOUGHT YOU ALL WOULD WANT TO KNOW SO YOU COULD SEND HER WELL-

WISHES.

AS FOR ME, IT HAS BEEN A FAIRLY GOOD WEEKEND. P=7, WHICH IS REALLY

GOOD FOR ME, SO CANNOT COMPLAIN.

HOPE YOU ALL HAD GOOD WEEKEND, AS FREE FROM PAIN AS POSSIBLE.

CYBER HUGGS TO ALL, AND REAL PRAYERS ALSO.

LOVE, SHIRLEY

[Guest guest]

Hi Kim

I just want to send my condolances to you on the loss of your mun. I know how

it feels. I just lost my mum at the end of January this year. I miss her so much

Lots of love

Joyce

xxxxxxxxxxxxxxxxxxxx

ANJILLAH@... wrote:

Dear KiM; I am so sorry about the death of your mother. I know how tough

that can be from my own experience.

I am sorry you are having so many troubles. However, I just wanted to ask if

you have Medicare. If you do, you could get a scooter free. If you don't

have it but have other insurance that might pay for it also. Another thing, if

you have neither you might still want to apply to the Scooter STore and you

could possibly get one free or have to pay it on time, it depends, I am not

sure. The Scooter Store is all over the US. Just call information and ask for

them. The original main company is in Texas. Good luck.

Sincerely, Colletti

Anjillah@...

[Guest guest]

Kim

Where in England did you visit?

How did you like it ?

Love Joyce

Barbara Sue <kickstandgranny@...> wrote:

WOW!!! A move over seas. Are you currently here in the US? I hope that if you

can find some packing fairies - you will send em my way!!!! I have been to

England several years ago. Okay more than several. It was a good visit!!!! I

hope that you will really enjoy it. Do you have a doc in mind there? Do you

know anything about their medical care? Just curious. Take care. Kim

<uksarbe@...> wrote:That you for your welcome. I look forward to

getting to know everyone

here. Today has been good so far but I haven't gone in to work yet so

who knows. I did manage to get in some excersise today so I'm happy

about that, it's been a month since I last worked out, what with

vacation, a trip to London to find a place to live and then a UTI.

Now if I could just get the packing fairies to come help me pack all

would be good.

> Hello. How are you? Welcome! It is so nice to have your here. I

> look forward to talking with you! I hope that today is a good day

for

> you. Take care. Kim

[Guest guest]

Kim:

Bless your heart. It can't be an easy situation when it is textbook, much

less when it isn't. I hope that the scans show that the treatment is

successful! Please, keep us posted.

and Rob 16 Spondy

On Sun, 16 Apr 2006 17:46:11 EDT mnmomof1@... writes:

He has cancer in his pancreas and chest, but his is unusual because he

actually has a chronic form of non-hodgkins Lymphoma. This cancer rarely

goes in the

pancreas, yet that was his primary site. It also is usually found in the

elderly, but he isn't even 40. He has stage 3. Thank you for your

prayers, so far,

nothing about his case has been textbook. Kim

In a message dated 4/16/2006 4:39:08 PM Central Standard Time,

snooksmama@... writes:

Kim:

We will keep your husband in our prayers. Where is his cancer?

and Rob 16 Spondy

[Guest guest]

Sorry I worged that wrong....... I mean this past Friday I was 3 weeks post op.

Kim

[Guest guest]

Kim are you not feeling any better I will have a couple of really good days I think whew the weirdness is over then Bamm it slaps me up side the head again.my mother says she thinks the surgry started me into menapause but i really think thats nuts maybe im just lossing my marbles.Kim maybe you need to talk to the doc about somthing for the depression hope all gets better sherriekendrick1086@... wrote: I am also dealing with depression. I was depressed before the

surgery and I am depressed again. This surgery has really put a strain on my marraige. I am not the easiest person to be around some times when I am not feeling well. I am afraid I am taking everything out on my husband. I would be a nicer person if I could just get a good nights sleep. Kim God bless all our heros PMSM LCPL JOSH India 2nd plt.

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Sherrie,

Glad to hear you are feeling good. I wish I could say I was not still having some pain.

Kim

[Guest guest]

Kim I am feeling much better these days.I have been doing alot in hot tub and pool. Pt said that it was going to just take me awhile because of walking 9-12 hours a day for 5 years with my knee bent due to limping.I am at 105 110 if he pushes it he is still more worried about me getting straight than bending it.I get stiff at night but I am not realling having any pain.We went to Monteray Bay this weekend it was so nice to get to walk on the beach again my ltkr felt no pain but now my right knee is taking over.anyway it iwll just have to wait awhile. sherriekendrick1086@... wrote: Sherrie, My right knee has already had 3 surgeries......including the scope done on it when my RTKR was done. I have also had one set of the lupricating injections. I probably should have the right one done but I am going to wait as long as can. How are you doing? I am finally starting to feel better.I still a lot of soreness at night. Kim God bless all our heros PMSM LCPL JOSH India 2nd plt.

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[Guest guest]

I'm there too (although it's my hip) but I feel a lot better during the days, but then am so sore and stiff in the evenings that I limp just like I always used to. I feel like I'm taking steps backward when this happens, like last night I had to turn around halfway to the mailbox because I just couldn't make it. Granted, I ought to be using my cane when I get like this. I did end up taking meds last night - I've been trying to only take them when I first wake up, but boy did it ever make a huge difference when I took them last night. Lying in bed felt so relaxing and comfotable and wonderful. 5 weeks post-op, I should still be allowed to ask for refills at this point, right? I've been trying to ration them, but I want to be able to still take them when I feel like I need them. My husband thinks I'm stupid and says to just call the Dr. and ask for more. I feel scared they'll tell me

I shouldn't be needing them at this point or something.

kelly

[Guest guest]

kelley, if i were you i would talk to your dr. about what is going on. ask their opinion on the pain meds.when i have doubts or just questions i set up a meds. check appointment and we go over everything.several times we have tried new things, sometimes it works out and sometimes it doesn't. but withoutsitting down and talking to them you will never find out!

[Guest guest]

You know it wasn't until we went camping with our close friends that they got to

see our son when he's over stimulated.

It was good for them and for us because they realised that we aren't just

rattling on about nothing when we talk about our son's autism and it's effect on

our lives.

( ) Re: Birthday party blues/Kim

Tanna-

You are right, I added a lot of stuff in, and although there was

hostility in my email it was not directed at you at all, more at the

situation. Sorry, I am just going through a bad time right now and

your message just triggered some feelings I was already having. I

think I actually meant to agree with you, that we should be proud of

what our kids *can* do -- I just didn't like the comparison to another

mom who appeared to be handling her son's disability better. I am

proud of what my son can do. It's just that not one of my friends

understands what I am going through, because my son 'looks normal to

them. " I am having a hard time dealing with interactions with these

friends. Whenever I have opened up to them about how difficult it is,

they just diminish my son's issues. And I am sick of hearing them

complain about their NT kids.

So anyway, sorry if it sounded in anyway like i was attacking your

post. I am just not done working through my own negativity about our

situation I guess.

-kim

>

> Kim,

> I didn't say anything about halos or angels or perfect love.

> You put all that in yourself.

> My email said 'proud ' and I wrote that email to try to convey

that I was sick to death of apologizing for the behaviors of my son,

and I'm not going to do it anymore. I'm going to be as proud as any

other mom. maybe more so.

> I'm done being angry and negative just because my son has a

disability......and yeah, we have alot on our plates and I would never

try to make any parent on this list to feel they should be doing more,

> I think you misread my email and most of all, my intentions.

> Wether or not our child's disability is obvious or not, we can still

be proud. Why not?

> tanna

>

[Guest guest]

I thought I would share some of the things that have happened to me recently

with my friends.... kinda to show everyone that there are caring people out

there.

Friend 1 - talk to her almost every day - she calls me all the time to tell me

that a show is going to have a topic of autism and watches it with me - even if

we are just on the phone together during the show so I can cry and get mad and

have support.

Friend 2 - not even really a friend - an acquaintance at my daughter's school

Last night she stopped me at my daughter's science fair to ask if I had received

the number. I had not so I asked " what number? " She stated that she had given

a phone number to a mutual friend of ours because she knows someone else with an

autistic child and thought I might be able to use a support! WOW!

Friend 3 - a coworker that I only talk to at work - Im on leave of absence right

now and she called me at home yesterday to tell me that she was watching CNN and

360 advertised they were going to talk about autism. she said she

immediately thought of me and thought I should know it was on.

I really felt like I am doing a great advocating job for my son. I am getting

the word out there. I am not ashamed and I won't hide it. Therefore, if he

had went to the science fair last night and had a meltdown because it was in a

large gym and loud, people would know why. I talk to total strangers every

changce I get to get the word out. People still think of autism as totally

incapacitated. Now that aspergers has been added, they do not know this. The

only advice I can give is spill your guts - to everyone.... Your supports will

come.

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

I agree with you--it is when there is silence there is ignorance. I tell

everyone too and can only hope that people care enough to show their support. I

believe that you learn who your true friends are when you live through something

like this. But it is also pretty wonderful when you meet people through support

groups that are going through exactly the same everyday life experiences that

you are.

-------------- Original message --------------

From: Amy McCarty <luvmy2arabians@...>

I thought I would share some of the things that have happened to me recently

with my friends.... kinda to show everyone that there are caring people out

there.

Friend 1 - talk to her almost every day - she calls me all the time to tell me

that a show is going to have a topic of autism and watches it with me - even if

we are just on the phone together during the show so I can cry and get mad and

have support.

Friend 2 - not even really a friend - an acquaintance at my daughter's school

Last night she stopped me at my daughter's science fair to ask if I had received

the number. I had not so I asked " what number? " She stated that she had given a

phone number to a mutual friend of ours because she knows someone else with an

autistic child and thought I might be able to use a support! WOW!

Friend 3 - a coworker that I only talk to at work - Im on leave of absence right

now and she called me at home yesterday to tell me that she was watching CNN and

360 advertised they were going to talk about autism. she said she

immediately thought of me and thought I should know it was on.

I really felt like I am doing a great advocating job for my son. I am getting

the word out there. I am not ashamed and I won't hide it. Therefore, if he had

went to the science fair last night and had a meltdown because it was in a large

gym and loud, people would know why. I talk to total strangers every changce I

get to get the word out. People still think of autism as totally incapacitated.

Now that aspergers has been added, they do not know this. The only advice I can

give is spill your guts - to everyone.... Your supports will come.

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

Good advice, and your friends are good ones, you are blessed!!

( ) Re:Kim

I thought I would share some of the things that have happened to me recently

with my friends.... kinda to show everyone that there are caring people out

there.

Friend 1 - talk to her almost every day - she calls me all the time to tell me

that a show is going to have a topic of autism and watches it with me - even if

we are just on the phone together during the show so I can cry and get mad and

have support.

Friend 2 - not even really a friend - an acquaintance at my daughter's school

Last night she stopped me at my daughter's science fair to ask if I had

received the number. I had not so I asked " what number? " She stated that she had

given a phone number to a mutual friend of ours because she knows someone else

with an autistic child and thought I might be able to use a support! WOW!

Friend 3 - a coworker that I only talk to at work - Im on leave of absence

right now and she called me at home yesterday to tell me that she was watching

CNN and 360 advertised they were going to talk about autism. she

said she immediately thought of me and thought I should know it was on.

I really felt like I am doing a great advocating job for my son. I am getting

the word out there. I am not ashamed and I won't hide it. Therefore, if he had

went to the science fair last night and had a meltdown because it was in a large

gym and loud, people would know why. I talk to total strangers every changce I

get to get the word out. People still think of autism as totally incapacitated.

Now that aspergers has been added, they do not know this. The only advice I can

give is spill your guts - to everyone.... Your supports will come.

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

Have a burning question? Go to Answers and get answers from real people

who know.

[Guest guest]

Hi Tanna-

Just responding to this now as i was out for a week. No need to

apologize. I forget sometimes that people who don't know me might not

know how to interpret my monologues from high up on my soap box where

the air can get thin!

I have the same exact wishes that my friends would try to educate

themselves on autism instead of dismissing things.

I am glad I found this group, it seems to be one of the more helpful

ones I am subscribed to!

-kim

>

> Kim, I am sorry too.....all is forgiven I hope!

> What you said about your friends...I can relate so well.

> They do not know what to say, so they are pretending there is

nothing wrong with your child. It hurts.

> Here's what we WANT them to say!!!

> " I bought a book about aspergers the other day, and I was reading it

last night and I wanted to ask you........ "

> OR

> " I was searching the internet yesterday for aspergers and I have

joined a group so that I can learn all about your son......I thought

you'd need a buddy to talk to about him, and I want to be that friend. "

> OR

> " Don't you worry, I totally understand your son, [they tell you your

son's likes and dislikes] and he will be perfectly safe with us, I

won't leave him alone for a MINUTE! Go, pamper yourself, it will be as

if he is with his own mother.....I know all about aspergers and I'm

not afraid!! "

>

> ...wouldn't it be soooo nice to know that someone cared enough that

they went out and educated themselves about your son's disability.

> I have never had anyone do that for me. And I know what load you are

carrying.

> [Have you ever heard that new song by Tracey Lawrence.. " Find Out

Who Your Friends Are " .]

> Kim, WE are your friends.....WE are here night and day.....for

you. I know it's not the same....but you can dump on us any time....we

know exactly what you are talking about....we know aspergers, we've

studied, we live it every day.

> Feel free to tell us anything...about aspergers or not....

> we can take it, you might feel better.

> tanna