Re: Help/Joanne

[Guest guest]

Dear Joanne:

Please don't give up the fight. We are all in this together. It does get

easier to bear when you stay connected to other people in this group who are

going through the same things. If the pain is too much to handle tell your

Dr. If he refuses to work with you there are other Doctors too you know.

Some are better than others. It is just that you have to find the one who

helps you the best.

By the way, my name is Colletti. My email address is

Anjillah@.... Please write to me, maybe I can help. If my mailbox is

full please write again. I am in the process of trying to clear my emails

(read them). I got behind and I am trying to catch up. Just please hang in

there. We all need each other.

Sincerely, Colletti

Anjillah@...- RA Support

[Guest guest]

Hi

How kind you are...thank you for the email. I went to a new rheumatologist

yesterday 250 mi round trip UGH!!! anyway he is kind and I will return.

Honestly I am tired of trying and afraid not to try if you know what I mean.

Just had the second fusion in the left foot in May and need the same

operation on the right foot as the right posterior tibial tendon is ruptured

but I just can't go through it again...no more...

I am hanging on literally by a thread...

Thanks

Joanne

[Guest guest]

Bless your heart, sounds really painful. I can't bear it when it's

my feet that hurt. Jeez, you gotta walk!! Sure hope your new Rheumy

does the trick for you. What a long trip though!! I travel 80 miles

round trip and I think THAT is a drag, I would hate to go 250 miles.

> Hi

>

> How kind you are...thank you for the email. I went to a new

rheumatologist

> yesterday 250 mi round trip UGH!!! anyway he is kind and I will

return.

> Honestly I am tired of trying and afraid not to try if you know

what I mean.

> Just had the second fusion in the left foot in May and need the same

> operation on the right foot as the right posterior tibial tendon is

ruptured

> but I just can't go through it again...no more...

> I am hanging on literally by a thread...

>

> Thanks

>

> Joanne

[Guest guest]

Joanne,

I can't even imagine driving that far to see a

rheumatologist. The trip must be exhausting. I'm glad you

like him. At least the trip is worthwhile.

I think a lot of us get in the same emotional state, wanting

to just give up but can't. Hopefully it is temporary, and

the fighting spirit takes over again. There is to much I

still want to do to give up. I hope the fusion helped you.

If it did, it will give you some strength to have the second

one done. I know how awful it is to face another surgery

especially when you've already had it done once. I've had 7

knee surgeries, of which the last 2 were replacements, and I

know how depressing it is to go through it. Hang in there

Joanne.

hugs,

a

Re: [ ] Help/Joanne

Hi

How kind you are...thank you for the email. I went to a

new rheumatologist

yesterday 250 mi round trip UGH!!! anyway he is kind and

I will return.

Honestly I am tired of trying and afraid not to try if you

know what I mean.

Just had the second fusion in the left foot in May and

need the same

operation on the right foot as the right posterior tibial

tendon is ruptured

but I just can't go through it again...no more...

I am hanging on literally by a thread...

Thanks

Joanne

[Guest guest]

Hi a,

Thanks for your note....Wow 7 knee surgeries....Bless your heart..you have

had a lot to deal with also.

My left foot was fused for the second time(different place) on May 3,

however, I now believe it was fused in the wrong position as t is very

painful to walk on and feels like I am walking on the outside of my foot.

The other foot has the ruptured tendon and after this last surgery I cannot

go through it again, emotionally or financially....plus I have no one to

help me at home now

RAt sure gets you down at times!!!Some days I just do not want to wake up.

Joanne.

[Guest guest]

Joanne,

I can sympathize with you since both of my feet are also

affected. They are my most painful part of my body. Since

your first fusion wasn't a success, I can understand your

hesitation to have the other one done. The surgeries I've

had have decreased my pain, making it easier to face the

next one. Have you tried cortisone injections?

a

Re: [ ] Re: Help/Joanne

Hi

Thanks for your email. It has been rough with both feet

in trouble..No

matter what I will not have a fusion on the right foot

even though the

tendon is ruptured..which it is!! and painful...many other

painful joints

also but feet and hands are bad

Joanne

[Guest guest]

Hi

The first fusion five years ago was a success howevere it caused additional

strain on another joint nearby and they had to go in and fuse that joint in

May.The surgeon said they should have done a triple arthrodes originally and

then the second fusion wouldn't have been necessary. And this is one of the

top foot and ankle surgeons in the country! scary isn't it? Unfortunately,

it is the second fusion that now is causing pain.....it is not fused in the

correct position. This surgeon did both surgeries.

Re: cortisone shots....I have had quite a few but my Mother had a destroyed

spine from those shots and I am very concerened about them. Also both feet

have prolapsed inward so the shots won't help that anymore.

Your feet also? how are your hands?

Joanne

[Guest guest]

when i had my wrist fused i went to the bank and let them know my signature

would change, signed 2 books of checks, that way my mom could write out

bills. i eventually learned to do everything left handed because i was in

that cast for 8 months. my writing has been chicken scratch since i broke it

at 17. thank god for computers!!

[Guest guest]

Joanne,

Not having help is hard, but with preparation it can be

done. I had 2 knee surgeries 3 months apart, while having 2

children under the age of 5. I was alone all day with them

because everyone worked. My husband took a weeks vacation

and stayed with me the first week, but then I was on my own.

Friends dropped by and helped out when they could, or

sometimes I'd get lucky and they would take them for a few

hours on their days off. It was one of the hardest

challenges I've ever faced. I was armed with lots of

activates that we could do in my bed. It is amazing how

much a 5 year old can do. She was my legs, and did a great

job helping with her 2 year old brother. I did as much as I

could from the wheelchair.

If you plan before your surgery and make things accessible

from a wheel chair, you will be able to take care of

yourself. But you also have the emotional and financial

burdens to deal with. I wish I could say some magic words

to take those away from you, but I can't. The emotions were

the hardest for me, but I always focus on the end result

rather than what I have to go through to get there if that

makes sense. If I though about what they were going to do

to me, I'd be a basket case. We're all different, and all

have different coping skills. I wish I were close to you so

that I could help you through this.

a

Re: [ ] Help/Joanne

Hi a,

Thanks for your note....Wow 7 knee surgeries....Bless your

heart..you have

had a lot to deal with also.

My left foot was fused for the second time(different

place) on May 3,

however, I now believe it was fused in the wrong position

as t is very

painful to walk on and feels like I am walking on the

outside of my foot.

The other foot has the ruptured tendon and after this last

surgery I cannot

go through it again, emotionally or financially....plus I

have no one to

help me at home now

RAt sure gets you down at times!!!Some days I just do not

want to wake up.

Joanne.

[Guest guest]

Joanne,

Yes, it is scary that a top surgeon did this. It sure

doesn't help you have faith in the outcome. My orthopedic

surgeon is really great and I have complete faith in him.

Without that faith, I'd be very hesitant too. My prior

surgeon was not very good, and it made it hard to face

surgery again, but since this other surgeon fixed all the

problems, and continued to do successful surgeries, my faith

was restored. It's still hard to deal with, but I'll do

what it takes to keep walking.

My hands are fine. It's starting to affect my wrists, but

so far my hands have been spared. My toes are also fine,

but the bones in my ankles and feet are really bad.

I'm leery of to many cortisone shots too. They can't be

given to frequently, which is probably what happened to your

mother. I had a doctor in the early stages of my disease

that was very cortisone happy. I'm thankful that while in

college physiology, they discussed the dangers of cortisone

and I began refusing them.

a

Re: [ ] Re: Help/Joanne

Hi

The first fusion five years ago was a success howevere it

caused additional

strain on another joint nearby and they had to go in and

fuse that joint in

May.The surgeon said they should have done a triple

arthrodes originally and

then the second fusion wouldn't have been necessary. And

this is one of the

top foot and ankle surgeons in the country! scary isn't

it? Unfortunately,

it is the second fusion that now is causing pain.....it is

not fused in the

correct position. This surgeon did both surgeries.

Re: cortisone shots....I have had quite a few but my

Mother had a destroyed

spine from those shots and I am very concerened about

them. Also both feet

have prolapsed inward so the shots won't help that

anymore.

Your feet also? how are your hands?

Joanne

[Guest guest]

Thank you a,

Good Lord, how did you ever do it with 2 under age 5? A challenge is

putting it mildly...

It is the emotional support I miss the most. My " significant other " who was

an RN was with me for 10 yrs so I was physically, financially and

emotionally dependent. I always expected him to be there....what a

joke...Even being an RN and knowing what this disease could do, he still

didn't want to deal with it when it happened....He is living well and I am

struggling to get medication every month. Honestly, I do not know how he

sleeps at night...But I am not the one to judge him...his day will come..I

am just trying to go on each day.

The Internist gave me Wellbutrin for depression but after3 or 4 weeks I

still don't feel much better if at all. Do you have any idea what is the

most prescribed medication for those of us dealing with these diseases?

I have tried Zoloft and Paxil but had severe headaches

Joanne

[Guest guest]

Hi

Smart choice about the cortisone shots. I believe a Rheumatologist told me

no more than 6 shots ayear anywhere but that is too many for me...plus they

are very very painful....

Regarding the surgeon who did the fusions...I see him on the 17th and if

this fusion is not positioned correctly9which I amsure it is not) then he

will do the other foot free!!!!

Joanne

[Guest guest]

Joanne,

I was born with a lot of determination, just ask mom LOL!

If someone challenged me to do something, I would turn

myself inside out to meet the challenge. I did it because I

had no choice. The mind is very powerful, and you'd be

surprised what you can handle if you have the will and the

desire. Sometimes when I look back, I wonder how I did it.

After my son was born is when my disease progressed to the

point of making me disabled. I had to push him around the

house in his baby coach because I couldn't carry him. When

I had to carry him, I used crutches and put him in a denim

baby carrier that I strapped on myself. Most of the time I

was in a wheelchair. I was very thankful that my daughter,

who was 3 at the time was an absolute gem that was easy to

keep amused with anything to draw or color with. It's no

surprise that she is now a fantastic artist in her senior

year of college, studying to be a graphic artist.

I don't know how your companion can live with himself. I'm

sorry he deserted you when you became sick. It has happened

to many members, but some of them found partners that were

very supportive. I hope that happens to you. When I lost

my husband suddenly to cancer, I never would have thought

that someone would want me with all my problems, but I was

lucky and married a great guy. It can happen Joanne.

Right now, things look so bleak.

I can't say which AD is prescribed the most, but the major

ones I hear everyone say they take would be Prozac, paxil

and Zoloft. Trazadone causes fatigue, so it is taken at

night to help sleep. If you've only been on Wellbutrin for

3 weeks, it is possible that your dose will be increased.

They can't start you off on a high dose, so it is gradually

increased. When do you go back to see your doctor?

a

Re: [ ] Help/Joanne

Thank you a,

Good Lord, how did you ever do it with 2 under age 5? A

challenge is

putting it mildly...

It is the emotional support I miss the most. My

" significant other " who was

an RN was with me for 10 yrs so I was physically,

financially and

emotionally dependent. I always expected him to be

there....what a

joke...Even being an RN and knowing what this disease

could do, he still

didn't want to deal with it when it happened....He is

living well and I am

struggling to get medication every month. Honestly, I do

not know how he

sleeps at night...But I am not the one to judge him...his

day will come..I

am just trying to go on each day.

The Internist gave me Wellbutrin for depression but after3

or 4 weeks I

still don't feel much better if at all. Do you have any

idea what is the

most prescribed medication for those of us dealing with

these diseases?

I have tried Zoloft and Paxil but had severe headaches

Joanne

[Guest guest]

Yes, they are very painful and worse of all, sometimes they

don't do squat!!!

Sometimes it would give me relief for several weeks and

other times it caused more pain.

I like your doctors guarantee! I hope he can correct the

problem and help you to walk without so much pain.

a

Re: [ ] Re: Help/Joanne

Hi

Smart choice about the cortisone shots. I believe a

Rheumatologist told me

no more than 6 shots ayear anywhere but that is too many

for me...plus they

are very very painful....

Regarding the surgeon who did the fusions...I see him on

the 17th and if

this fusion is not positioned correctly9which I amsure it

is not) then he

will do the other foot free!!!!

Joanne

[Guest guest]

a...

Thank you..I read your email and cried because you have overcome so much and

you are so right...it looks so very bleak to me right now as I didn't

realize how much I depended on him...and it hurts...My brother trying to be

kind says " Try to hold on to him because it is going to be real hard finding

someone else with your illness " . He didn't mean to hurt me...but as I told

him " You can't hold on to someone who doesn't want you! "

My only salvation is that he is a man who is guilt ridden anyway and this

will only add to it!!! God forgive him because I can't..

Thank so much for your kindness and words of support.

Joanne.

[Guest guest]

Joanne,

I know it hurts very deeply. 10 years is a long time to be

in a relationship. I don't know if I could take back a man

that did that to me. I'd be afraid if he kicked me once

when I was down, he'd do it again. They say things happen

for a reason, so I hope you find out what that reason is

soon. I'm glad I could make you feel a little better. I

get down in the dumps when things just pile up making it

hard to see through all the garbage. Friends I've met here

have pulled me out of my cave many times.

a

Re: [ ] Help/Joanne

a...

Thank you..I read your email and cried because you have

overcome so much and

you are so right...it looks so very bleak to me right now

as I didn't

realize how much I depended on him...and it hurts...My

brother trying to be

kind says " Try to hold on to him because it is going to be

real hard finding

someone else with your illness " . He didn't mean to hurt

me...but as I told

him " You can't hold on to someone who doesn't want you! "

My only salvation is that he is a man who is guilt ridden

anyway and this

will only add to it!!! God forgive him because I can't..

Thank so much for your kindness and words of support.

Joanne.

[Guest guest]

Joanne

I have been reading your posts about your Terribly painful break-up.

It is just awful what he did. I do know for a fact that God does not

close a door without opening another. Could be that He has something

so much better for you. He always has for me. Even though, when I

was going through it, it wasn't very plesant, what came out at the

other end was way better than anything I could have plannned for

myself. Don't lose hope and faith.

By the way, I am . I am 33, and have had RA for 3 1/2

years. Still haven't found a treatment that works for me. I have two

boys, ny is 3 and is 20 months. Welcome to the group. I

can't remember if I welcomed you or not. (I have Fibromyalgia too)

> Joanne,

> I know it hurts very deeply. 10 years is a long time to be

> in a relationship. I don't know if I could take back a man

> that did that to me. I'd be afraid if he kicked me once

> when I was down, he'd do it again. They say things happen

> for a reason, so I hope you find out what that reason is

> soon. I'm glad I could make you feel a little better. I

> get down in the dumps when things just pile up making it

> hard to see through all the garbage. Friends I've met here

> have pulled me out of my cave many times.

> a

> Re: [ ] Help/Joanne

>

>

> a...

> Thank you..I read your email and cried because you have

> overcome so much and

> you are so right...it looks so very bleak to me right now

> as I didn't

> realize how much I depended on him...and it hurts...My

> brother trying to be

> kind says " Try to hold on to him because it is going to be

> real hard finding

> someone else with your illness " . He didn't mean to hurt

> me...but as I told

> him " You can't hold on to someone who doesn't want you! "

> My only salvation is that he is a man who is guilt ridden

> anyway and this

> will only add to it!!! God forgive him because I can't..

>

> Thank so much for your kindness and words of support.

> Joanne.

>

>

>

>

>

>