Re: Fears

[Guest guest]

I think I fear mostly the loss of the use of my hands and being able to walk. I used to do very fine crochet work and needle point and I used to run and go for long walks. Now I can barely hold a needle and it hurts to walk around the grocery store. It is just too frustrating and I am only 35.

For the most part I try not to think about it and have switched to other things. I am starting water running and hope to get back into swimming

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

From: snowdrift52003

Rheumatoid Arthritis

Sent: Wednesday, November 24, 2004 11:20 PM

Subject: Fears

What do you fear (or have you feared) most related to R.A.? How have you come to grips with your fears (or not)?Sierra

---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.799 / Virus Database: 543 - Release Date: 19/11/2004

[Guest guest]

This is a really good question! I guess I fear most becoming

totally dependent on someone else to help me through normal

activities - getting dressed, eating, etc. Over the past 6 years

with RA I've learned to modify and make accomodations in doing

several things, but I can still take care of myself. I don't know

that I've come to grips with the fear - but I try not to even think

about it. I focus on what I can do, and how I can do the things I

enjoy, and try to keep a positive attitude.

Beth

>

> What do you fear (or have you feared) most related to R.A.? How

have

> you come to grips with your fears (or not)?

>

> Sierra

[Guest guest]

I was dxed 4 years ago. My first concern was continuing to work. I am a

professional musician and my hands were somewhat involved. Now that I am on

enough drugs to stun a horse, I do feel better and more hopeful about my future.

Of course, I am the queen of denial which can be a wonderful asset at times.

Lately after a bad flare I've tried to up my supplements, do more physical

therapy, exercise more and seriously try to reduce the stress in my life. I

think (?) things are improving for me. I do feel that a positive attitude (along

with serious denial) has made it possible for me to live with this disease

despite its ups and downs. I try not to dwell on the things I can no longer do

(like run) but I admit that sometimes it makes me really sad. Having just had

two close friends have breast cancer makes me look at my situation with new

eyes. We all have burdens. Mine doesn't feel unmanageble.

gloria

[Guest guest]

Hi Sierra,

I am lucky as my daughter is almost 16, so I don't have to worry about raising her the way all of you with youngsters do. I don't worry about the joint stuff or pain anymore, I stopped worrying about the inevitable years ago and put my energy into finding ways of coping with it. I take the usual drugs but I also meditate which does help, as stress is a big trigger for me.

The things I am concerned about are the 'non joint' effects RA has, such as those on the internal organs etc. I try to eat healthily and do what I can to treat my body well.

Hopefully this will either stop it affecting me that way or at least delay it for as long as possible.

hugs, Lynne

[Guest guest]

and over you, too, ! and over us all!

love and peace to you

yellowshelly smiegal <shelsmieg2000@...> wrote:

You sound as deep as I do! Seriously, your fears are just, but God willing, I pray He will watch over you, my friend! ~yellow dancer <yellowplugempress@...> wrote:

i'm concerned about losing my say in life because i am no longer physically capable. I am concerned that the ra or a complication will cause the failure of my organs and muscles and i'll die without any means of defense.

so i put these thoughts out of my mind for as long as i can keep them there

and i try to figure ways that i can rip out some kind of financial stability, so that what i am and all that i am isn't wasted by some silly devastatingly painful and disabling condition that decided to rare it's monstrous maw just as i decided to go out on my own. we are not our bodies. that has forever been my argument.

it would be the ugliest joke to make my life a sacrifice to mobility.

love and peace to you all

yellowsnowdrift52003 <snowdrift52003@...> wrote:

What do you fear (or have you feared) most related to R.A.? How have you come to grips with your fears (or not)?Sierra

Do you ?Take with you! Get it on your mobile phone.

Do you ?The all-new My – What will yours do? __________________________________________________

[Guest guest]

I fear being an invalid. I have always been independent and the worse thing I

can think of is not being able to care for myself and being a burden. My

husband has diabetes, and as a result, has a shortened life expectancy. He is

66 and I am 62. What happens if he becomes an invalid in the future and I can't

care for him? Or vise versa. Scary stuff.

All this is complicated by the fact that my mother died from the drug that I am

now taking...MTX. She was an alcoholic, didn't tell the RA and didn't stop

drinking when whe went on the drug. One day her liver and kidneys and

everything else just shut down and she was dead in six hours. You can bet that

I don't drink ANYTHING!!!!!!

Sharon

[Guest guest]

My biggest fear would be that I will not have any medications to

combat the RA or that my body will become resistant to the

medications I am currently taking. I have been on a grocery list of

drugs and I continuously have to move from one group to another due

to my body's resistant or side effects. Thankfully I was unable to

take Vioxx 4 years ago based on what we know now in 2004. I lost my

methotrexate injections due to a drug shortage and I am unable to

take methotrexate pills due to stomach problems. This week, there is

hoopla that Bextra is bad and should not be used, which is very

upsetting to me because it helps me.

If I do end up without effective meds (notice the word effective),

then it would affect my ability to earn a living for myself and my

mom who is a senior citizen. I drag myself to work everyday in

pain. My co-workers still take me for granted. If I call in sick

they call throughout the day with questions, so I go to work no

matter what--w/o my meds that would definitely not be possible.

K

>

> What do you fear (or have you feared) most related to R.A.? How

have

> you come to grips with your fears (or not)?

>

> Sierra

[Guest guest]

I'm with you on this one. When I answered the question about fears

I didn't even think about the concern/fear that I'll run out of

effective drugs. I'm close to it and just hope that something new

will be discovered before my body becomes resistant to what I'm

taking. Running out of effective medications would defintely impact

my ability to work as well as do other things I enjoy.

beth

> >

> > What do you fear (or have you feared) most related to R.A.? How

> have

> > you come to grips with your fears (or not)?

> >

> > Sierra

[Guest guest]

Since everyone else has responded to this I figure I'll chime in too. It's

been interesting to see how people's fears seem to differ according to age.

I'm afraid that I'll never be able to grow up and be a real adult. I'm 23,

but I still live at home with my parents and sister, and I can't drive. I

may as well still be 16 because I can't do anything by myself. It isn't

that my parents still set my rules (if I wanted to go out clubbing with

friends and come home at 5am, they wouldn't forbid it... it's just that I

have no friends to go out with so the issue's never come up). It's that I'm

dependent on them for everything. I have no job and no driver's license. I

never even graduated college. We always thought I'd begin my life " once

your health is on the right track again " but we've been saying that since

high school and at this point I'm terrified I'll still be living at home

with my parents supporting me when I'm 40.

Jenni

[Guest guest]

i am new to this group iwas on the drug vioxx which really helped me so i tried to do without but i would wake up so stiff i could hardly walk to the bathroom so now i am on mobic it seems to help. it it seems that once i am up and moving the stiffness goes away. annmarieoregonbeth <broot@...> wrote:

I'm with you on this one. When I answered the question about fears I didn't even think about the concern/fear that I'll run out of effective drugs. I'm close to it and just hope that something new will be discovered before my body becomes resistant to what I'm taking. Running out of effective medications would defintely impact my ability to work as well as do other things I enjoy.beth> > > > What do you fear (or have you feared) most related to R.A.? How > have > > you come to grips with your fears (or not)?> > > > Sierra

[Guest guest]

Hi Jenni,

Your post touched me. Thanks for writing so honestly. I'm sure your

dreams can come true!

Sierra

--- In Rheumatoid Arthritis , Jenni <chaospearl@o...>

wrote:

> Since everyone else has responded to this I figure I'll chime in

too. It's

> been interesting to see how people's fears seem to differ according

to age.

>

> I'm afraid that I'll never be able to grow up and be a real adult.

I'm 23,

> but I still live at home with my parents and sister, and I can't

drive. I

> may as well still be 16 because I can't do anything by myself. It

isn't

> that my parents still set my rules (if I wanted to go out clubbing

with

> friends and come home at 5am, they wouldn't forbid it... it's just

that I

> have no friends to go out with so the issue's never come up). It's

that I'm

> dependent on them for everything. I have no job and no driver's

license. I

> never even graduated college. We always thought I'd begin my

life " once

> your health is on the right track again " but we've been saying that

since

> high school and at this point I'm terrified I'll still be living at

home

> with my parents supporting me when I'm 40.

>

> Jenni

[Guest guest]

I am afraid that RA will render me unable to work and then I will lose my health

insurance,

be unable to afford $1200 worth of enbrel every month and become totally

dependent on

someone else. Best to keep plugging along and shove these thoughts aside.

--- In Rheumatoid Arthritis , " snowdrift52003 "

<snowdrift52003@y...>

wrote:

>

> What do you fear (or have you feared) most related to R.A.? How have

> you come to grips with your fears (or not)?

>

> Sierra

[Guest guest]

In a message dated 11/29/2006 6:10:14 P.M. Central Standard Time, everyothername.istaken@... writes:

after listening to the doctor and reading one of my hip replacement books that i received today, i'm really concerned about 3 things:

1) infection

2) blood clots

3 joint displacement

have any of you here had any of these?

hugs,linDUHlouTRHR 1/22/2007

Nope not me, everything went just as it was supposed to. I worried about a blood clot once but it was just muscles that weren't used to being worked again. Love,

[Guest guest]

Hi

You are correct in being concerned, but do not worry:

1. Most operating theatres have a laminar air flow system and surgeins

use antibiotics to prevent infection, so the infection rates these

days are less than 0.5% (very low indeed).

2. DVT or blood clots can occur - and the best way to prevent these is

with good ankle exercises, TED stockings, pneumatic compression pumps

used in hospital, early mobilisation and low molecular weight heparin.

A combination of all these measures should give you the best chance of

DVT prevention.

3. THRs can dislocate and the chance of a dislocation is 1 to 6%.

Hence it may be better to opt for a Resurfacing or a Big Femoral head

metal on metal THR. If you are one of those that does not want to have

one of these 2 joints (for any reason), then you should ask for a 36

head ceramic on ceramic THR, which will last long and will minimise

the chances of a dislocation. (Note - conventional THRs use femoral

heads of 22mm or 26 mm or 28mm).

I hope this information is helpful.

Regards

Ameet Pispati

DR. AMEET PISPATI

Specialist in Hip and Knee Surgery

www.hipkneesurgery.info

>

> after listening to the doctor and reading one of my hip replacement

books that i received today, i'm really concerned about 3 things:

> 1) infection

> 2) blood clots

> 3 joint displacement

> have any of you here had any of these?

>

> hugs,

> linDUHlou

> TRHR 1/22/2007

>

[Guest guest]

In a message dated 11/30/2006 12:29:53 AM Eastern Standard Time, Critrkrazy@... writes:

) blood clots

I had a scare 5 days post-op...I woke up and my ankle was very swollen....it was a sunday and the drs office told me to come in first thing in the morning and they sent me to the hospital for a vascular sonogram....everything was OK, but that sort of thing has to be checked out right away...if I had pain in the leg also, they would have sent me to the ER on Sunday....

other than that, no other problems....

[Guest guest]

thanks , glad you had no complications

hugs,linDUHlouTRHR 1/22/2007

Nope not me, everything went just as it was supposed to. I worried about a blood clot once but it was just muscles that weren't used to being worked again. Love,

after listening to the doctor and reading one of my hip replacement books that i received today, i'm really concerned about 3 things:

1) infection

2) blood clots

3 joint displacement

have any of you here had any of these?

hugs,linDUHlouTRHR 1/22/2007

[Guest guest]

so how did you know it being swollen was a sign of a blod clot when the leg is normally swollen from the surgery? what other symptoms are there for blood clots?

hugs,linDUHlouTRHR 1/22/2007

) blood clots

I had a scare 5 days post-op...I woke up and my ankle was very swollen....it was a sunday and the drs office told me to come in first thing in the morning and they sent me to the hospital for a vascular sonogram....everything was OK, but that sort of thing has to be checked out right away...if I had pain in the leg also, they would have sent me to the ER on Sunday....

other than that, no other problems....

[Guest guest]

Lindy, These risks must be addressed. And I can get you the risk rates. But someone just in the past few days posted a message with the risk rates for everything you can think of related to surgey. I accidentally erased it, but it was very interesting. And you'll see the risk rates for these types of serious issues are very low. Can someone copy and repost that message for Lindy? It was the most extensive list I've seen. Reading about risks is like reading about he possible side effects of a drug. It

scares you. It's the cost of being educated and repaired. I had a cousin die in his mid-forties from post-op blood clot. So this was my BIG fear. The constant passive motion (CPM) machine was on most of the day and night and switched back and forth from one leg to the other. Is this or anything similar used for hip surgery? Inflatable cuffs placed above my ankles constantly compressed and decompressed. Again, is that a knee thing? It was surprising how often, after bathroom breaks, meals, etc. -- wheneve they had to come off -- I had to remind hospital personnel to get the CPM machine and cuffs back on AND, especially, to turn them on! Get mobile fast and don't ever

stop. I rejected the bed pan and catheter and chose to get up immediately to use the bedside commode. Getting out of bed that quickly hurt like H-E-double L, but. I wanted to (1) empty my bladder completely to avoid infection and (2) take every opportunity to get up and move often. You will be up and walking soon after surgery. If I thought my stroll down the hall was a little late or forgotten, I grabbed nurses, aids or therapists and said, "Let's go!" And you need to keep moving when you get home. An anticoagulant, or blood thinner, will be given to you after surgery and even before to those who have a proven history of blood clots. I believe I was on it a few days shy of four weeks and received frequent blood tests to monitor my blood. T.E.D. support stockings, or teds, will be put on you after sugery. I asked for a second pair so I would always have a clean pair. Never let them bunch up. When I got to rehab, my nurse and aide advised me I didn't need them after a week. I wanted to be rid of them and took their advice. The doctors didn't say anything. Then I found out a friend of mine who had hip replacement wore hers for six weeks! Her doctor was taking no chances. I know others on this page had blood clots. And I know they survived them because they lived to write about it. Warm regards, Donna lindy <everyothername.istaken@...> wrote: after listening to the doctor and reading one of my hip replacement books that i received today, i'm really concerned about 3 things: 1) infection 2) blood clots 3 joint displacement have any of you here had any of these? hugs,linDUHlouTRHR 1/22/2007

Check out the all-new beta - Fire up a more powerful email and get things done faster.

[Guest guest]

Lindy

I like the saying that ignorance is bliss. DeNile is not just a

river in Egypt. Don't worry be happy. All that good stuff. And I

will admit that before my first total shoulder replacement I

chickened out about 3 hours before surgery. Drugs helped and I am not

afraid to admit that sometimes you need them to get by in a sane

manner. Had the surgery a month later and had the second shoulder

done about a year later.

I would do it all over again. It has been so worth it.

Sue

>

> sue,

> OUCH. sorry you had an accident.

> well i think i'm becoming TOO informed because i've read the books

and now all i can dwell on is infection, clots and displacement.

DUMB, i was dumb to read those books.

>

> hugs,

> linDUHlou

> TRHR 1/22/2007

>

>

> Lindy

>

> The answer is no, no and no. I have both hips replaced and one

> revision. Had the revision because the stem loosened due to an

auto

> accident.

>

> sue

>

> > after listening to the doctor and reading one of my hip

replacement

> books that i received today, i'm really concerned about 3 things:

> > 1) infection

> > 2) blood clots

> > 3 joint displacement

> > have any of you here had any of these?

>

[Guest guest]

Lindy, my fear of infection kept me away from surgery for 6 long, painful years.

My hip is

still stiff even though I had my surgery in August. I went through the surgery

very well and

am going back in January to have my other hip replaced.

I was in such little pain after surgery that I never did use the pain pump, nor

did I take any

other pain meds. I was prescribed oxycontin and did take it twice when I got

home but it

gave me such nightmares that I threw it away. I take nothing now but Tylenol at

bedtime.

Arianne

>

> Hi Donna,

> my surgeon told me the risks are low, like 1% for infections, i think that's

right, but i've

still been obsessing. i have to stop; otherwise, i'll talk myself right out of

the surgery. i

do remember that post but perhaps it was before i went to the doctor and i

didn't pay that

much attention to it. hearing it in person, then reading it in the book made

more of an

impact on me. UGH!

> i keep thinking, i'm not in that bad of pain now, i know it will be more

intense pain when

i get out of surgery -- but i also don't hurt AS much now unless i do something.

well

DUH. i have to do things. if i just sit all day, of course i'm not going to

hurt so much, but

what kind of life is that and if i don't have surgery, i know one day i will end

up in a

wheelchair, and i don't want that.

> i will be put on blood thinners and the socks, i'm sure -- i even had those

after my

hysterectomy. i'm not sure about the inflatable cuffs. i'm such a worrywart

that knowing

i'm on blood thinners will make me worry that i'll somehow bleed to death, like

internally,

w/o even knowing i'm bleeding.

> and the joint displacement -- i worry i'll cross my ankles during my sleep or

do

something without realizing it and POP, there will go my joint.

> hugs,

> linDUHlou

> TRHR 1/22/2007

>

>

>

> Lindy,

>

> These risks must be addressed. And I can get you the risk rates. But someone

just in

the past few days posted a message with the risk rates for everything you can

think of

related to surgey. I accidentally erased it, but it was very interesting. And

you'll see the

risk rates for these types of serious issues are very low.

>

> Can someone copy and repost that message for Lindy? It was the most

extensive list

I've seen.

>

> Reading about risks is like reading about he possible side effects of a

drug. It scares

you. It's the cost of being educated and repaired. I had a cousin die in his

mid-forties from

post-op blood clot. So this was my BIG fear.

> a.. The constant passive motion (CPM) machine was on most of the day and

night and

switched back and forth from one leg to the other. Is this or anything similar

used for hip

surgery?

> b.. Inflatable cuffs placed above my ankles constantly compressed and

decompressed. Again, is that a knee thing? It was surprising how often, after

bathroom

breaks, meals, etc. -- wheneve they had to come off -- I had to remind hospital

personnel

to get the CPM machine and cuffs back on AND, especially, to turn them on!

> c.. Get mobile fast and don't ever stop. I rejected the bed pan and

catheter and chose

to get up immediately to use the bedside commode. Getting out of bed that

quickly hurt

like H-E-double L, but. I wanted to (1) empty my bladder completely to avoid

infection and

(2) take every opportunity to get up and move often. You will be up and walking

soon after

surgery. If I thought my stroll down the hall was a little late or forgotten, I

grabbed nurses,

aids or therapists and said, " Let's go! " And you need to keep moving when you

get home.

> d.. An anticoagulant, or blood thinner, will be given to you after surgery

and even

before to those who have a proven history of blood clots. I believe I was on it

a few days

shy of four weeks and received frequent blood tests to monitor my blood.

> e.. T.E.D. support stockings, or teds, will be put on you after sugery. I

asked for a

second pair so I would always have a clean pair. Never let them bunch up. When I

got to

rehab, my nurse and aide advised me I didn't need them after a week. I wanted to

be rid of

them and took their advice. The doctors didn't say anything. Then I found out a

friend of

mine who had hip replacement wore hers for six weeks! Her doctor was taking no

chances.

> I know others on this page had blood clots. And I know they survived them

because

they lived to write about it.

> Warm regards,

> Donna

>

[Guest guest]

Hi everyone

I've just got home from my right THR (and have 180 emails in my inbox!) so have not followed this thread, but thought you might like to know of my positive surgery experience, especially for you Lindy

I had the surgery Tuesday morning and arrived home this morning (Saturday). It's fair to say the first 24-48 hours were challenging, but not because of pain, mainly because of your initial inability to move that leg, general recovery from surgery, having to stay in one position etc. But I was amazed at the speed of progress from day 3 on: I was on a walking frame on day 3 and on double crutches, doing a flight of stairs, on day 4. (Remember though, I had managed to keep good muscle tone, else it would be much slower.) Today I walked up the 40 steps from our garage up to our house and have slept or rested the rest of the day.

The one piece of advice I would give is, although you're in pain, build up your muscles in a pool. Others in my ward had lost all muscle tone and of course then recovery will be harder. My PT said they say 'exercise pre-surgery' until the cows come home, for an easier recovery and I think they're right on the button.

So Lindy, yes it's very scary stuff, but the pain is post-op muscle pain, not the worse pain we have all been through. I would do it again in a heartbeat!

in NZ

[Guest guest]

Hi

The " larger the head, the more the wear " applies to metal on

polyethylene joints. With ceramic on ceramic or metal on metal, you

have just the opposite!!! ie. " larger the head, less is the wear " .

A 36 ceramic head will tremendously increase the hip stability and

minimise he chances of dislocation as compared to a 28 head.

Also, most hip systems do a have a posterior lip to reduce chances

of dislocation, but the lip is generally not as helpful as joint

replacement companies claim it to be.

Good luck, and I'm sure it will all go well.

Regards

Ameet Pispati

>

> Thank You Dr. Pispati for writing me. The things you said have

made me feel somewhat better.

> I am getting a ceramic on ceramic but not sure of the size. I

wonder why all the socket part of the devices don't have a " lip " to

better prevent displacement? I read that some devices have

these " lips " and it sounds like a good thing to me. I also read the

larger the femoral head, the quicker it wears out, but I'm wondering

if this applies to the ceramic, which is supposed to be more

durable. Thanks again for taking the time to reply to my concerns.

> lindy

> TRHR 1/22/2007

>

>

>

> Hi

> You are correct in being concerned, but do not worry:

> 1. Most operating theatres have a laminar air flow system and

surgeins

> use antibiotics to prevent infection, so the infection rates

these

> days are less than 0.5% (very low indeed).

> 2. DVT or blood clots can occur - and the best way to prevent

these is

> with good ankle exercises, TED stockings, pneumatic compression

pumps

> used in hospital, early mobilisation and low molecular weight

heparin.

> A combination of all these measures should give you the best

chance of

> DVT prevention.

> 3. THRs can dislocate and the chance of a dislocation is 1 to

6%.

> Hence it may be better to opt for a Resurfacing or a Big Femoral

head

> metal on metal THR. If you are one of those that does not want

to have

> one of these 2 joints (for any reason), then you should ask for

a 36

> head ceramic on ceramic THR, which will last long and will

minimise

> the chances of a dislocation. (Note - conventional THRs use

femoral

> heads of 22mm or 26 mm or 28mm).

> I hope this information is helpful.

> Regards

> Ameet Pispati

> DR. AMEET PISPATI

> Specialist in Hip and Knee Surgery

> www.hipkneesurgery.info

>

[Guest guest]

Great to have you back so soon .

I'm pleased it all went so well.

You are in good shape to be able to do so much so soon

Larry

At 09:43 PM 12/1/2006, you wrote:

Hi everyone

I've just got home from my right THR

(and have 180 emails in my inbox!) so have not followed this thread, but

thought you might like to know of my positive surgery experience,

especially for you Lindy

[Guest guest]

Welcome home, ! It's terrific to read how well you're doing. :-) And you're up and sitting at the computer. Who was it that said she felt like they took part of her brain during joint replacement surgery? That's how I felt. You sound great...and coherent! :-) Warm regards, Donna Harnett <wjkh@...> wrote: Hi everyone I've just got home from my right THR (and have 180 emails in my inbox!) so have not followed this thread, but thought you might like to know of my positive surgery experience, especially for you Lindy I had the surgery Tuesday morning and arrived home this morning (Saturday). It's fair to say the first 24-48 hours were challenging, but not because of pain, mainly because of your initial inability to move that leg, general recovery from surgery, having to stay in one position etc. But I was amazed at the speed of progress from day 3 on: I was on a walking frame on day 3 and on double crutches,

doing a flight of stairs, on day 4. (Remember though, I had managed to keep good muscle tone, else it would be much slower.) Today I walked up the 40 steps from our garage up to our house and have slept or rested the rest of the day. The one piece of advice I would give is, although you're in pain, build up your muscles in a pool. Others in my ward had lost all muscle tone and of course then recovery will be harder. My PT said they say 'exercise pre-surgery' until the cows come home, for an easier recovery and I think they're right on the button. So Lindy, yes it's very scary stuff,

but the pain is post-op muscle pain, not the worse pain we have all been through. I would do it again in a heartbeat! in NZ

Want to start your own business? Learn how on Small Business.

[Guest guest]

sue, i'm beginning to think this exactly. i don't need to know anything more now. ;-) i've read enough of all the risks, i only want to hear good stuff. i'm glad you eventually went through with your surgery and don't regret either.

lindy

LindyI like the saying that ignorance is bliss. DeNile is not just a river in Egypt. Don't worry be happy. All that good stuff. And I will admit that before my first total shoulder replacement I chickened out about 3 hours before surgery. Drugs helped and I am not afraid to admit that sometimes you need them to get by in a sane manner. Had the surgery a month later and had the second shoulder done about a year later.I would do it all over again. It has been so worth it.Sue