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,

I'm rather new to this myself, but with my situation, I was originally sent

to a Pediatric Infections Disease Dr., who sent me immediately on to an

Immunologist. The Immunologist did preliminary blood work, but once she

confirmed there was some sort of immune deficiency, she sent me right to

Children's Hospital. She said they had the best resources to find the

answer. They dove right into things to try to uncover the actual diagnosis.

It is taking a while, but my son's deficiency is not so cut and dry and we

are doing some genetic testing which takes a while. But with my experience,

I would try to go to a Children's Hospital if there is one in your area and

see a doctor that specializes in Pediatric Immune Deficiency. I travel 1

1/2 hours to my closest one in Philadelphia.

My Doctors were all real good about passing us along to the best possible

place and not trying to treat something they didn't specialize in.

Best of luck to you.

Kim - Mom to Nick 7, 5 (Hyper IGM??) and 2

now i am confused

> I just got my babies second round of blood work back. I was told

> they were doing this to find what he was low in and see if he

> qualifies for replacement therapy. OK. Well they get the blood work

> back and it shows all low. IGG subclass 4 and all pneumococcal AD.

> So I ask the doctor if he could explain it to me....we were there for

> my other son. He says 'oh that is normal for a baby.' Then he says

> that they don't even begin to do the replacement therapy until they

> are 16 mo and that all babies are low and most are normal by the time

> they turn two. So why then did he need the blood work? I don't get

> it. They drew the blood while putting an IV, he had to get the IV

> for an endoscopy. But if he had gotten a special poking just to be

> told oh there was no point in it I would be more upset than I am

> now. I thought I was waiting for a clearer answer of what is going

> on and instead I got the same vague answer.

>

> I swear there is a question in this, not just a rant. I am just

> wondering have you heard this, does it make sense? I don't know. I

> am trying to keep this doctor with a change in insurance and I am

> beginning to think maybe I will just go to the new doc. Also this is

> a pulmonary/allergy doctor. Is this even the right doctor for these

> problems. My pediatrician said he thinks that is who follows this.

> But I hear you all talk about immunologists. OK now its a rant sorry.

>

>

>

>

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the

sole responsibility of the poster and should not be taken as professional

advice.

>

>

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Guest guest

my take on it would be that if the blood work had come out zilch, non-existent,

nada then they would have run tcell

studies and looked to see if there was a SCID (Severe combined immune

deficiency) present. Since only subclass 4 and

the response were low then that is a premature immune system (aka transient

deficiency) and most kids do outgrow it.

But if the numbers had been completely absent then that could have sent up red

flags.

Ursula Holleman

Macey's mom (6 yr. old with CVID, asthma, sinus disease, GERD, Sensory

Integration Disorder, Diabetes Insipidus, colonic

inertia)

http://maceyh.home.att.net

/

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  • 4 years later...

That's what we're here for. To fill in those boring

hours.

if you want to watch some home videos start here

http://www.youtube.com/profile?user=geriatric1927

It might give you some inspiration.

Maybe someone should start a story about having a hip

replaced. Go day by day.

Just an ideal.

Aussie Margaret

--- arianne377 <arianne377@...> wrote:

> My PT came today. During her visit, she was giving

> me different time schedules for

> healing, etc

> She told me that i will have restrictions until

> November. I find it so hard to believe that. Is

> it true?

> Approximately when will the time come when I can

> perform light housekeeping, laundry,

> vacuuming?

> My poor hubby has been carrying the full load since

> mid June. I wasn't able to even stand

> for more than 5 minutes.

> I would like to think I will be able to decorate my

> house for Christmas, put on my annual

> Thanksgiving dinner, etc.

> Otherwise, I might just as well have the other hip

> done before January. Why not? I won't be

> able to do anything anyway, and wasting a whole year

> of my life is not my idea of fun.

> Arianne, who is bored already. Can't you tell?

>

>

>

>

>

>

>

>

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Not to be mean, but you should be able to do those things now. Well, how long has it been since your surgery? Laundry and vacuuming are pretty easy to do, and I think I was doing them in week 2 after my hip replacement. I would imagine that your physical therapist is more referring to things like horseback riding and water skiing as far as what you should refrain from till November.

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Let me get this straight. You get a 4-month vacation from household duties and you want to get back to them to save your poor hubby?

Ann

Now I am confused

My PT came today. During her visit, she was giving me different time schedules for healing, etcShe told me that i will have restrictions until November. I find it so hard to believe that. Is it true? Approximately when will the time come when I can perform light housekeeping, laundry, vacuuming?My poor hubby has been carrying the full load since mid June. I wasn't able to even stand for more than 5 minutes.I would like to think I will be able to decorate my house for Christmas, put on my annual Thanksgiving dinner, etc.Otherwise, I might just as well have the other hip done before January. Why not? I won't be able to do anything anyway, and wasting a whole year of my life is not my idea of fun.Arianne, who is bored already. Can't you tell?

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Margaret, I watched Geriatric 1927's blog after the link appeared on AOL. What a delightful gentleman and what a calming, steady performance. I like your idea of having someone do a video of hip (or knee) replacement experiences day by day. I too had thought that would be a wonderful idea. Blessings, Lane Margaret from Australia <zztinau@...> wrote: That's what we're here for. To fill in

those boringhours.if you want to watch some home videos start herehttp://www.youtube.com/profile?user=geriatric1927It might give you some inspiration.Maybe someone should start a story about having a hipreplaced. Go day by day.Just an ideal.Aussie Margaret--- arianne377 <arianne377 > wrote:> My PT came today. During her visit, she was giving> me different time schedules for > healing, etc> She told me that i will have restrictions until> November. I find it so hard to believe that. Is > it true? > Approximately when will the time come when I can> perform light housekeeping, laundry, > vacuuming?> My poor hubby has been carrying the full load since> mid June. I wasn't able to even stand >

for more than 5 minutes.> I would like to think I will be able to decorate my> house for Christmas, put on my annual > Thanksgiving dinner, etc.> Otherwise, I might just as well have the other hip> done before January. Why not? I won't be > able to do anything anyway, and wasting a whole year> of my life is not my idea of fun.> Arianne, who is bored already. Can't you tell?> > > > > > > >

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What did the OS tell you? I had a PT who wanted me to do stuff that

broke the restrictions.....did not even know about them. So I don't

trust the PT. Unless they had a THR...which my main guy did. He set

the other PT straight!

I was fully weight bearing after both my THR and revision. I did

what I felt I could do comfortably. Which was laundry and the such

as soon as I was off the crutches. That varied between 2 to 4 weeks.

I was back to work part time at about 3 weeks each time. Driving at

6 - 3 & 2 weeks. It, for me, got better each time.

But while you are down, you might want to get the other hip done

sooner than later. I had my first THR around Thanksgiving and the

second in July of the next year. I was ready by April.

Take care and try not to overdo because of boredom.

Sue

-- In Joint Replacement , " arianne377 "

<arianne377@...> wrote:

>

> My PT came today. During her visit, she was giving me different

time schedules for

> healing, etc

> She told me that i will have restrictions until November. I find it

so hard to believe that. Is

> it true?

> Approximately when will the time come when I can perform light

housekeeping, laundry,

> vacuuming?

> My poor hubby has been carrying the full load since mid June. I

wasn't able to even stand

> for more than 5 minutes.

> I would like to think I will be able to decorate my house for

Christmas, put on my annual

> Thanksgiving dinner, etc.

> Otherwise, I might just as well have the other hip done before

January. Why not? I won't be

> able to do anything anyway, and wasting a whole year of my life is

not my idea of fun.

> Arianne, who is bored already. Can't you tell?

>

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No, I want to get back to them to save my poor house and gardens. Hubby vacuums

the

rugs with the floor brush of the vacuum and just skims the surface of the rug.

Granted, my

rugs are not supposed to have a beater brush used on them (orientals), but by

just

skimming the surface, the rug looks worse the next day, but he doesn't do it

again for a

week. We have a Tortoiseshell cat and her fur balls roll around the hard wood

floors.

Hubby has never heard of dusting, either. It has been 2 months since any

furniture has

been dusted. He cleans the glass tables downstairs in the family room every

week, but has

never dusted. Everything is WHITE !!!

I have 61 rose bushes besides 1/4 acre of perennials. The perennials can pretty

much take

care of themselves, but he has been pruning the roses after each flush of bloom.

He has

done it all wrong and wonders why the roses aren't continuing to bloom. DUH

I won't say anything to him because he has been such a dear, and could be one of

those

husbands who do nothing. It's just that being out of commission since mid June

is doing a

number on me. The previous PT told me he will have me on a cane within a couple

of

weeks and going to outpatient PT. Then this bimbo comes in and tells me

otherwise, then

does 4 meaningless excercises with me at the sink and is gone within 15 minutes.

How can I improve with so little PT? She also told me that she 'forgot' to bring

me the

diagrams of the excercises she wants me to do, but will bring them next Tuesday.

seems as if she wasn't prepared for me yesterday. Meanwhile, I have yet to have

a shower

because no one has sent the OT to show me how to get into the tub. I ask at

every session

only to be told that they will send someone, but they will not let me take a

shower until

she comes. No one seems to know when that will be. It has been two weeks. I see

my

Doctor on Tuesday to have the staples removed. I will stink to high heaven by

then.

Arianne

>

> Let me get this straight. You get a 4-month vacation from household duties

and you

want to get back to them to save your poor hubby?

>

> Ann

>

> Now I am confused

>

>

> My PT came today. During her visit, she was giving me different time

schedules for

> healing, etc

> She told me that i will have restrictions until November. I find it so hard

to believe that.

Is

> it true?

> Approximately when will the time come when I can perform light housekeeping,

laundry,

> vacuuming?

> My poor hubby has been carrying the full load since mid June. I wasn't able

to even

stand

> for more than 5 minutes.

> I would like to think I will be able to decorate my house for Christmas, put

on my

annual

> Thanksgiving dinner, etc.

> Otherwise, I might just as well have the other hip done before January. Why

not? I won't

be

> able to do anything anyway, and wasting a whole year of my life is not my

idea of fun.

> Arianne, who is bored already. Can't you tell?

>

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Sue, that is the exact reason for my confusion. My doctor told me I have no

restrictions. He

told me I could take a shower after 4 days. The PT's say I DO have restrictions

.. I have a

walker instead of crutches, and although the doctor, nor the PT's in the

hospital never told

me this, my home PT's have told me that I have to take baby steps using my

walker in

order to turn. I cannot turn from my waist, but must take little steps around in

a circle in

order to turn my walker. I find this so confining, especially since my surgeon

mentioned

nothing about this. I am so glad I am seeing him Tuesday. I know he will set me

straight.

The reason I am giving myself some time between the surgeries, is that I had to

have two

transfusions and am on Iron since my surgery. I just want to get my blood built

back up.

Arianne

> >

> > My PT came today. During her visit, she was giving me different

> time schedules for

> > healing, etc

> > She told me that i will have restrictions until November. I find it

> so hard to believe that. Is

> > it true?

> > Approximately when will the time come when I can perform light

> housekeeping, laundry,

> > vacuuming?

> > My poor hubby has been carrying the full load since mid June. I

> wasn't able to even stand

> > for more than 5 minutes.

> > I would like to think I will be able to decorate my house for

> Christmas, put on my annual

> > Thanksgiving dinner, etc.

> > Otherwise, I might just as well have the other hip done before

> January. Why not? I won't be

> > able to do anything anyway, and wasting a whole year of my life is

> not my idea of fun.

> > Arianne, who is bored already. Can't you tell?

> >

>

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I took me a while before I could have a bath, my PT could not figure

out how I would be able to get in and out of the bath. I finally

figured out that the sofa and coffee table were the same " depth " as

the bath. So, I stuck my right leg out in front of me, grabbed hold

of the sofa and coffeee table and sat. I then reversed the process

and it worked. The first thing I told my husband when he came home

was " I can have a bath tonight " . He made me get in the bath with no

water and show hime that I could do it. Boy did that first bath feel

good.

Grace

- In Joint Replacement , " arianne377 "

<arianne377@...> wrote:

>

> No, I want to get back to them to save my poor house and gardens.

Hubby vacuums the

> rugs with the floor brush of the vacuum and just skims the surface

of the rug. Granted, my

> rugs are not supposed to have a beater brush used on them

(orientals), but by just

> skimming the surface, the rug looks worse the next day, but he

doesn't do it again for a

> week. We have a Tortoiseshell cat and her fur balls roll around the

hard wood floors.

> Hubby has never heard of dusting, either. It has been 2 months

since any furniture has

> been dusted. He cleans the glass tables downstairs in the family

room every week, but has

> never dusted. Everything is WHITE !!!

> I have 61 rose bushes besides 1/4 acre of perennials. The

perennials can pretty much take

> care of themselves, but he has been pruning the roses after each

flush of bloom. He has

> done it all wrong and wonders why the roses aren't continuing to

bloom. DUH

> I won't say anything to him because he has been such a dear, and

could be one of those

> husbands who do nothing. It's just that being out of commission

since mid June is doing a

> number on me. The previous PT told me he will have me on a cane

within a couple of

> weeks and going to outpatient PT. Then this bimbo comes in and

tells me otherwise, then

> does 4 meaningless excercises with me at the sink and is gone

within 15 minutes.

> How can I improve with so little PT? She also told me that

she 'forgot' to bring me the

> diagrams of the excercises she wants me to do, but will bring them

next Tuesday.

> seems as if she wasn't prepared for me yesterday. Meanwhile, I have

yet to have a shower

> because no one has sent the OT to show me how to get into the tub.

I ask at every session

> only to be told that they will send someone, but they will not let

me take a shower until

> she comes. No one seems to know when that will be. It has been two

weeks. I see my

> Doctor on Tuesday to have the staples removed. I will stink to high

heaven by then.

> Arianne

>

>

>

>

>

>

>

>

>

>

>

> >

> > Let me get this straight. You get a 4-month vacation from

household duties and you

> want to get back to them to save your poor hubby?

> >

> > Ann

> >

> > Now I am confused

> >

> >

> > My PT came today. During her visit, she was giving me different

time schedules for

> > healing, etc

> > She told me that i will have restrictions until November. I

find it so hard to believe that.

> Is

> > it true?

> > Approximately when will the time come when I can perform light

housekeeping,

> laundry,

> > vacuuming?

> > My poor hubby has been carrying the full load since mid June. I

wasn't able to even

> stand

> > for more than 5 minutes.

> > I would like to think I will be able to decorate my house for

Christmas, put on my

> annual

> > Thanksgiving dinner, etc.

> > Otherwise, I might just as well have the other hip done before

January. Why not? I won't

> be

> > able to do anything anyway, and wasting a whole year of my life

is not my idea of fun.

> > Arianne, who is bored already. Can't you tell?

> >

>

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We are all very good at figuring out solutions to our problems. Living with the

debilitation

of arthritis forces us to be innovative. I don't want a bath, I want a shower.

The problem is,

we don't have a walk-in shower, but a shower in our bath tub. I will have to

figure out how

to get my leg over the tub, bring my other leg in, then sit on my shower chair.

My shower chair was delivered today. I am going to read the instructions, and

search the

web for clues on how to do this, and I should be all set.

Arianne

> > >

> > > Let me get this straight. You get a 4-month vacation from

> household duties and you

> > want to get back to them to save your poor hubby?

> > >

> > > Ann

> > >

> > > Now I am confused

> > >

> > >

> > > My PT came today. During her visit, she was giving me different

> time schedules for

> > > healing, etc

> > > She told me that i will have restrictions until November. I

> find it so hard to believe that.

> > Is

> > > it true?

> > > Approximately when will the time come when I can perform light

> housekeeping,

> > laundry,

> > > vacuuming?

> > > My poor hubby has been carrying the full load since mid June. I

> wasn't able to even

> > stand

> > > for more than 5 minutes.

> > > I would like to think I will be able to decorate my house for

> Christmas, put on my

> > annual

> > > Thanksgiving dinner, etc.

> > > Otherwise, I might just as well have the other hip done before

> January. Why not? I won't

> > be

> > > able to do anything anyway, and wasting a whole year of my life

> is not my idea of fun.

> > > Arianne, who is bored already. Can't you tell?

> > >

> >

>

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I understand not pivoting on my operated side, but no pivoting on the unoperated

leg as

well? Aside from pivoting, I am told I must take the baby steps with both feet.

It takes me

20 to 25 steps to do a 1/2 circle.

Does that sound right?

Arianne

>

> The turning restrictions are because I think you can dislocate if you pivot on

the surgical

leg...pivoting was a no-no.

>

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---Hi Arianne,

What you must never do is turn your operated leg inward.

So, let's say yout left hip is operated on.

If you ever need to turn to your left, you must pick up your left

foot and turn a little on your right foot, then pick up your right

foot to put it facing toe out evenly with the left foot, then lift

your left foot again and repeat the process until you are facing the

direction you need to go in. It usually only takes one or two steps.

If you feel safer not turning in that direction at all, then just

turn to your right by pointing your right toe out, lift your left

foot and point it the same way as your right foot. That way your

left foot is never turned inward which they say can dislocate it

early on in the healing process.

Just don't pivot on the operated leg.

Hope this didn't make things even muddier for you. :0) ..... Maxine

In Joint Replacement , " arianne377 "

<arianne377@...> wrote:

>

> I understand not pivoting on my operated side, but no pivoting on

the unoperated leg as

> well? Aside from pivoting, I am told I must take the baby steps

with both feet. It takes me

> 20 to 25 steps to do a 1/2 circle.

> Does that sound right?

> Arianne

>

>

>

>

>

>

>

> >

> > The turning restrictions are because I think you can dislocate

if you pivot on the surgical

> leg...pivoting was a no-no.

> >

>

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Thanks, Maxine. I have been very careful of not turning either foot inward. I

haven't done

it at all. I will now try what you suggest, and see if I can do it with one or

two steps.

Arianne

> > >

> > > The turning restrictions are because I think you can dislocate

> if you pivot on the surgical

> > leg...pivoting was a no-no.

> > >

> >

>

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Arianne--

I don't know how your shower/tub is set up, but I have a very very,

tiny bathroom with a very tiny tub in the shower. I have to put my

chair sideways... and then I put my back to the chair. I sit, swing

good ® leg around, and then the left leg so I am NOT facing the

water. I have a shower routine... but my mom still has to help shave

my leg, and I have her wash my back just becuase it feels so good.

Have someone help you get in and out. It was very tough at first, but

once you get the hang of it , you'll be good. If you need further

help, I can send pictures if you'd like.

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Have you not considered hiring someone to take care of the house

cleaning - perhaps on a weekly or bi-weekly basis? It is easier to

boss around someone that you hire and pay than it is to boss around a

spouse or someone who volunteers. Sometimes you get what you pay for.

>

> No, I want to get back to them to save my poor house and gardens.

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Thanks . I will try it first thing in the morning.

Arianne

>

> When I was in the hospital after my surgery, my occupational therapist taught

me a

move that she referred to as the " golfer's lunge. " And, as you mentioned, it

turns out I'd

been doing it far before my surgery because my arthritis was preventing me from

bending

my leg like a normal person. ANyway, I think this stretch could get you over

the side of

the tub. Thinking about it now, it's how I did it myself.

> Basically, the golfer's lunge is standing on your good leg, and then as you

bend over to

pick up your (golfball) your surgical leg raises off the floor, out straight,

behind you. I

have heard it also described as a sort of arabesque? position in ballet.

Whichever the

case, you can do it pretty easily, without hurting your hip (pre or post

surgery.)

> When it comes to getting into the shower, I steadied myself by holding onto my

walker,

or the wall, or the towel rack, and got my good leg over the side and into the

tub first.

Then, you do the above mentioned type of stretch to get your surgical leg over.

You can

hang onto your shower seat for balance, and lean forward, bringing that bad leg

up behind

you.

> give it a try and be careful and good luck!

>

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Ok, I will try it in fewer steps. Oh boy, will I be glad to see my doctor

Tuesday. Thanks,

Arianne

>

> I was never told not to pivot on my good leg, but then again, I don't think I

did. (I just

tried now, to see what it would feel like) and it seems like a big turn for the

surgical side

as well. But 20 steps for a half circle sounds like a lot - I think maybe I'd

do it in 3 or 4

steps. Plus, I came to find out later, that basically all these " dislocation

rules " that I

followed in the early days were set more for all of the healing that was taking

place in the

muscle tissue...any sudden movements could set back any healing progress made.

At my

6 week appt. they said that it would take a giant car accident or something

equivolent to

dislocate my new hip. Also, I remember in my early days (I'm 8 weeks post op

this week

actually) but in the early days and weeks I remember I could feel when I was

close to

pulling my leg or hip too far in any direction, and so I'd use that as a gauge

as well. You

definately know your own body.

>

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You never know what you'll pick up in a med forum. I didn't know orientals

weren't

supposed to be vacuumed by a beater brush. That includes rotating brush? Does

it

include fake orientals?

Well, I have Karastan on my stairs and upstairs hall, a wool 'fake' oriental in

my dining

room, and my first ever real handmade Persian in my living room. None of them

should

have the beater brush of a vacuum used on them. I have a Mielle vacuum with a

suction

bar. It looks just like a beater bar but doesn't have the extra power surge. It

has

phenominal suction and a beater bar, but the beater bar is run by suction only,

no power

surge.

Arianne

> >

> > Let me get this straight. You get a 4-month vacation from household duties

and you

> want to get back to them to save your poor hubby?

> >

> > Ann

> >

> > Now I am confused

> >

> >

> > My PT came today. During her visit, she was giving me different time

schedules for

> > healing, etc

> > She told me that i will have restrictions until November. I find it so

hard to believe

that.

> Is

> > it true?

> > Approximately when will the time come when I can perform light

housekeeping,

> laundry,

> > vacuuming?

> > My poor hubby has been carrying the full load since mid June. I wasn't

able to even

> stand

> > for more than 5 minutes.

> > I would like to think I will be able to decorate my house for Christmas,

put on my

> annual

> > Thanksgiving dinner, etc.

> > Otherwise, I might just as well have the other hip done before January.

Why not? I

won't

> be

> > able to do anything anyway, and wasting a whole year of my life is not my

idea of

fun.

> > Arianne, who is bored already. Can't you tell?

> >

>

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do you have double shower doors, or triple doors? We put in triple doors last

winter in

anticipation of this, and I still can't see how I can do it without having my

knee higher than

my hip.

I do thank you for the instructions, and will practice this in the morning.

Arianne

>

> Arianne--

> I don't know how your shower/tub is set up, but I have a very very,

> tiny bathroom with a very tiny tub in the shower. I have to put my

> chair sideways... and then I put my back to the chair. I sit, swing

> good ® leg around, and then the left leg so I am NOT facing the

> water. I have a shower routine... but my mom still has to help shave

> my leg, and I have her wash my back just becuase it feels so good.

> Have someone help you get in and out. It was very tough at first, but

> once you get the hang of it , you'll be good. If you need further

> help, I can send pictures if you'd like.

>

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Actually, I used to have someone come in on a weekly basis until we retired, and

thought

the money would be better spent elsewhere.

Since hubby has been doing it, all I hear is how much better the house is

compared to

when I had the lady come in. I haven't had her in 5 years, and mostly had her in

the spring

and summer when I spent most of my time working in the gardens. He also tells me

that

another aspect of him doing it is that it is free. lol

Poor guy, he really does think he is doing a good job. How can I dash his dreams

and tell

him otherwise?

Arianne

> >

> > No, I want to get back to them to save my poor house and gardens.

>

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I don't have any pictures. I could just take pictures (fully clothed

of course) of the process, to help her understand a little better. I

am very, very visual learner.

>

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It will be 2 weeks tomorrow since my surgery. I go to the doctor Tuesday to get

the staples

out. I was sent home from the hospital with 'no light housework' instructions.

I will know more Tuesday.

Arianne

w

>

> Not to be mean, but you should be able to do those things now. Well, how long

has it

been since your surgery? Laundry and vacuuming are pretty easy to do, and I

think I was

doing them in week 2 after my hip replacement. I would imagine that your

physical

therapist is more referring to things like horseback riding and water skiing as

far as what

you should refrain from till November.

>

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This is so true, Lane. Why is it that it takes a major event in our lives before

we alter our

habits and change our priorities? I kept telling my daughter that if I came out

of this

surgery, and the one to follow, I would look very differently at life. I do plan

to play more

and work less. I have a neighbor who is 80 years old. She just decided to fully

retire on

May 31. She had been working at a bank 3 full days a week since she 'retired'.

Of the four

days she was off work, she would leave her house by 10 am every day and be out

all day.

Whenever I visited her, her house always looked very nice. Now that she is fully

retired, she

maybe is home one day a week. She and her hubby are out every other day.

Arianne

> > >

> > > No, I want to get back to them to save my poor house and gardens.

> >

>

>

>

>

>

>

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

> Get your email and more, right on the new .com

>

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