Re: What To Do Now

[Guest guest]

Dear Susie In Mn:

Hi, my name is Colletti. I live in Linden, New Jersey. I just read

your letter and I really think you should not make any decisions until you

are more stabilized. Have you seen a rheumatologist? Are you on any

medicine? There are medicines to control your symtoms and control the

illness from getting worse. There are also pain medicines that are usually

prescribed and it sounds like you probably are not on any. Once your illness

gets more stabilized you should be capable of doing more things around the

house. I don't know about building a house, but everyone is an individual.

Who knows what you could be capable once you are stabilized. Find a

rheumatologist and get on the necessary meds. You don't have to live that

close to the Doctor either. I live 100 miles from my Doctor and only see him

every 2-3 months or so. He sends me prescriptions in between.

It would be good if you husband had a job where he could see you everyday.

Being alone is not good for anyone. Maybe a home business would work nicely

for both of you. Something you could help with. However, selling everything

is not always the answer. Right now you don't need the added extra work of

packing up everything and unpacking some place else, and starting over.

Don't give up all your dreams because you have RA. It is not the end of the

world. You just have to get on some medicine and you will be pretty good. I

know that for a fact. I am doing okay and I have had it about 7 years and

also have osteoporosis and Asthma and a few other things.

Well, if there is anything I can do to help or answer any questions you might

have, write me. It is: Anjillah@....

Love to hear from you and that you get to see a Rheumatologist soon.

Sincerely, Colletti

[Guest guest]

Hello

that is a very sad email....and i am sorry for your losses of your plans for

your life together...

are your treatments giving you any ease at all and when you say your husband

comes home on weekends as he worries about your safety and being alone...do

you have friends and family to contact if something should happen..

i know for my husband and i who are 52 and 53 when we were both struck

within 10 days of each other and diagnosed 2 years later...we never

envisioned our future being.... " you do this half of the grocery store and i

will do the other half " nor the anger of our daughter for seeing both her

parents at one time being struck down...i used to bike 45 miles each

day...walk on the treadmill for four miles and row for a half hour..then one

morning bang...i was grateful to make it to the bathroom...

i have told paula that in the 3 months of treatment on the doxy and i know i

am one of the few who takes " the road back " treatment by dr brown...i have

lost the stiffness in my hands for the most part...and the nodes have gone

way down...and i hold out much hope that this disease will remiss...i keep

in mind the woman who suffered so badly for so many years and found dr

brown...and she was the one who did the NIH studies and met with

congress...and she is in full remission and living a full life...i hold that

hope out...in time...maybe 6 months maybe a year...and i know in one book i

read..which i cant recall there are so many NEW treatment options and so

much research going on that i think things will change in time..

you read of people on the enbrel or remicade...and you see their lives

change in a matter of days..

find the right treatment and maybe some quality will return..

do you need a link line for help...being alone as you said...or is there

someone near by that you can contact if something does happen...i guess that

is what i take from this email is yours and yours husband fear you are

alone...of course along with the debilitation...

i am sorry your plans have dissolved due to a wicked master of ra..for it

rules our lives and robs us of quality...but there might be a better

treatment for you..i also love to garden,,,my garden is very small now...

a big soul hug to your heart that pains...to your husbands..

and to all of us in the group who have lost so many dreams

sam

[ ] What To Do Now

> I've only been here a short time, but never really introduced myself

> to you. It might help you to understand how devastating the

> diagnoses of RA is on my life, as I'm sure it is on everyone's.

>

> My husband, Steve, and I just celebrated our 7th wedding Anniversary

> on Monday the 8th of July. We're not spring chickens - I'm 55 years

> old. But we're very much like young newlyweds with lots of dreams and

> ideas on our lives together.

>

> Steve and I talked about owning acreage for our dogs and for Steve to

> hunt on. After a big computer networking deal, we had enough to put

> down and our 40 acres in NW MN. We moved from a busy city in

> Michigan to a very rural wooded 40 acres in Northern Minnesota with

> our 4 Alaskan Malamutes in tow.

>

> We had owned our own business in Michigan, but it wasn't doing very

> well and we knew that we had to make some changes. Just before

> moving to MN, Steve began school to earn his CDL licensee to drive

> truck over the road. Our lives changed from being together 100% of

> the time, to being away from each other 90% of the time.

> As it was, this is not what we had planned. We were going to open

> our Electronic business in NW MN. I hadn't planned on being here

> alone. But that was not a big deal. I love it here and there's

> nothing like looking up at the stars and not seeing city lights. By

> the way, I was raised on a farm and have owned farms of my own, I

> love the country life.

>

> The property and house needed a lot of work. Work that we planned on

> doing ourselves. We decided to put up a new house due to the fact

> that our current house is falling apart. It would cost more to fix

> it then it would to build a new one. But, it would require both of

> us to be strong and able to do a lot of the work ourselves. We have

> already cleaned a cleared a lot of our property and it looks like our

> own park. I love to garden.

>

> Now, all of these plans have dissolved due to the diagnosed RA. I

> can't even walk to the mailbox at the end of the drive to collect the

> mail because my feet and ankles won't let me. I have to lay down 2

> or 3 times a day because of the fatigue. I can't even, as I've said

> before, walk my dogs down the dirt road into the state woods. On top

> of the RA, I also have severe osteoporosis. This was diagnosed as

> severe 7 years ago. I don't know what the effect of RA will be

> combined with the osteo.

>

> So, it's breaking my heart, but we're selling our property and

> looking for a more established house. Something closer to good

> medical treatment and not so rural. Steve has been coming home on

> weekends because he knows how depressed I've been and how much pain

> I've been in. He's afraid that I'll fall and no one will find me.

> This makes me feel so bad, I've always been independent. Even the

> osteo never slowed me down.

>

> In the past 4 years, my life has changed so much. I never expected

> something like RA to kill all of our dreams and make me so dependent.

>

> Well, thanks for listening. I hope I didn't sound as if I were

> feeling sorry for myself. I'm just looking in a new direction and

> looking forward (have to, can't look back) to finding a new home.

>

> Thanks Everyone

>

> Susie in MN

>

> .

>

>

>

>

>

>

[Guest guest]

Susie,

Don't give up. I can't believe I'm saying this because I was so totally

crippled for a couple of years. Did give up on some things and took a

hiatus from others. But things are looking up now. With the right

medication for you, the fatigue gets better. It takes time and

experimentation to get to that right cocktail though. And as for me,

surgery has been a miracle. My left knee bent in at a big angle and my hip

would go out constantly and both hurt horribly. But in Sept. I had a knee

replacement and in April a hip replacement and now I have no pain in those

joints and can move well. I had gone from hobbling to walker to wheelchair

and back again but no hobbling. Now my worst joint is my left shoulder but

hoping for successful trigger point injection when I see a new rheumy in

August. Of course I am left handed. The knee and hip were the left side

too. The meds take care of the swelling and my other joints just swell. We

raise miniature schnauzers and have 5 dogs but due to my arthritis installed

a doggie door and underground fencing. Also have severe asthma. Need a new

pulmonary doctor too. So I can do most anything now but in small spurts.

Can't stand for long but for awhile if I can lean. This is a terrible

disease but not the end of life. We with it seem to be a tough lot and will

survive. Just need to adapt and endure.

Temple

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http://www.homestead.com/kuddlekrittersfarm/index.html FAMILY

http://www.homestead.com/kuddlekrittersdairygoats/index.html FARM

http://www.homestead.com/kuddlekraft/index.html CRAFTS

[Guest guest]

Hello ,

Thanks for listening (reading?) my message. You show a lot of caring

and knowledge of RA.

I am, and have been, on medication since November. I started out

taking Celebrix (and going to a non-compadent doctor). He finally did

some blood work and found out that my RA level was at 277. He then

put me on Mobic 7.5 mgs and on Methotrexate - 1 pill each once a

day. I didn't think that he really knew what he was doing and found

a specialist in Duluth that I am seeing now. In fact, I have an

appointment with him tomorrow in Internationa Falls, where he has an

office.

As for moving, we have talked this out. The negatives on staying

here far out weigh the positives. Putting up a house right now would

cost us more than finding an established home. And I can no longer

do without the things (like indoor plumbing) that I could before

because of the pain in my ankles and feet and my hands. We are in a

very remote area. Our closest neighbor is about 5 miles away. We do

not have very good medical help here. Most people drive to Duluth (6

hours away) or Fargo, ND (4 hours away). All of my doctors are in

Duluth, including my Internist.

Also, due to the severity of my Osteo (I have only 10% of the bone a

woman my age should have) I would never consider seeing a

chiropractor or a massuse. I don't trust them first of all and

second, if my doctor thought that is would help, he could send me to

a registered theripst. I've already had all of my ribs broken, I've

had 2 compression factures in my back and numorus other small bones

that just break. I've lost most of my jaw bones to the osteo and

this means that I've also lost my teeth.

As for the home business, I've had my own business for over 8 years

now and it has always been out of my home. I'm a trained computer

tech and electronic repair, such as televisions, vcr's, stereos,

etc. That work entails lifting computers, which due to my feet

killing me and my osteo not allowing me to pick up anything over

10lbs. is no longer an option. I would have to pick-up computers,

which weight over 10 lbs and TV's which weigh too much to think about

picking up.

I have a BA degree in business and have worked as General Manager for

various businesses until I went into business for myself. The stress

would be too much and it is what drove me to go into business for

myself in the first place.

Thanks Angelea

Susie in MN

> Dear Susie In Mn:

> Hi, my name is Colletti. I live in Linden, New Jersey. I

just read

> your letter and I really think you should not make any decisions

until you

> are more stabilized. Have you seen a rheumatologist? Are you on

any

> medicine? There are medicines to control your symtoms and control

the

> illness from getting worse. There are also pain medicines that are

usually

> prescribed and it sounds like you probably are not on any. Once

your illness

> gets more stabilized you should be capable of doing more things

around the

> house. I don't know about building a house, but everyone is an

individual.

> Who knows what you could be capable once you are stabilized. Find

a

> rheumatologist and get on the necessary meds. You don't have to

live that

> close to the Doctor either. I live 100 miles from my Doctor and

only see him

> every 2-3 months or so. He sends me prescriptions in between.

> It would be good if you husband had a job where he could see you

everyday.

> Being alone is not good for anyone. Maybe a home business would

work nicely

> for both of you. Something you could help with. However, selling

everything

> is not always the answer. Right now you don't need the added extra

work of

> packing up everything and unpacking some place else, and starting

over.

> Don't give up all your dreams because you have RA. It is not the

end of the

> world. You just have to get on some medicine and you will be

pretty good. I

> know that for a fact. I am doing okay and I have had it about 7

years and

> also have osteoporosis and Asthma and a few other things.

> Well, if there is anything I can do to help or answer any questions

you might

> have, write me. It is: Anjillah@A...

> Love to hear from you and that you get to see a Rheumatologist soon.

> Sincerely, Colletti

>

>

>

[Guest guest]

Hi Susie,

I am so sorry you have lost so much to this disease. I lost my job and a

whole career. This disease changed my whole life. I was someone who worked

60 hours a week and was raising my kids. One day it all just crashed down on

me and I lost everything. Hang in there you will find the right answers. I

know how frustrating it can be. On top of it all you don't feel well and

that makes it worse. I will keep you in my prayers.

Lynn (MeMom)

susiejd123 wrote:

> I've only been here a short time, but never really introduced myself

> to you. It might help you to understand how devastating the

> diagnoses of RA is on my life, as I'm sure it is on everyone's.

>

> My husband, Steve, and I just celebrated our 7th wedding Anniversary

> on Monday the 8th of July. We're not spring chickens - I'm 55 years

> old. But we're very much like young newlyweds with lots of dreams and

> ideas on our lives together.

>

> Steve and I talked about owning acreage for our dogs and for Steve to

> hunt on. After a big computer networking deal, we had enough to put

> down and our 40 acres in NW MN. We moved from a busy city in

> Michigan to a very rural wooded 40 acres in Northern Minnesota with

> our 4 Alaskan Malamutes in tow.

>

> We had owned our own business in Michigan, but it wasn't doing very

> well and we knew that we had to make some changes. Just before

> moving to MN, Steve began school to earn his CDL licensee to drive

> truck over the road. Our lives changed from being together 100% of

> the time, to being away from each other 90% of the time.

> As it was, this is not what we had planned. We were going to open

> our Electronic business in NW MN. I hadn't planned on being here

> alone. But that was not a big deal. I love it here and there's

> nothing like looking up at the stars and not seeing city lights. By

> the way, I was raised on a farm and have owned farms of my own, I

> love the country life.

>

> The property and house needed a lot of work. Work that we planned on

> doing ourselves. We decided to put up a new house due to the fact

> that our current house is falling apart. It would cost more to fix

> it then it would to build a new one. But, it would require both of

> us to be strong and able to do a lot of the work ourselves. We have

> already cleaned a cleared a lot of our property and it looks like our

> own park. I love to garden.

>

> Now, all of these plans have dissolved due to the diagnosed RA. I

> can't even walk to the mailbox at the end of the drive to collect the

> mail because my feet and ankles won't let me. I have to lay down 2

> or 3 times a day because of the fatigue. I can't even, as I've said

> before, walk my dogs down the dirt road into the state woods. On top

> of the RA, I also have severe osteoporosis. This was diagnosed as

> severe 7 years ago. I don't know what the effect of RA will be

> combined with the osteo.

>

> So, it's breaking my heart, but we're selling our property and

> looking for a more established house. Something closer to good

> medical treatment and not so rural. Steve has been coming home on

> weekends because he knows how depressed I've been and how much pain

> I've been in. He's afraid that I'll fall and no one will find me.

> This makes me feel so bad, I've always been independent. Even the

> osteo never slowed me down.

>

> In the past 4 years, my life has changed so much. I never expected

> something like RA to kill all of our dreams and make me so dependent.

>

> Well, thanks for listening. I hope I didn't sound as if I were

> feeling sorry for myself. I'm just looking in a new direction and

> looking forward (have to, can't look back) to finding a new home.

>

> Thanks Everyone

>

> Susie in MN

>

> .

>

>

>

[Guest guest]

Hi all..I also used to work as a CNA ( certified nurse aide ) here in Canada and

had to give it all up too. I loved my work and found it very difficult to adjust

as it feels like you just keep losing things. It's alot of loss for any one

person to sustain. What I think about now is how to reinvent my life..I can't go

back to my pre RA life but maybe I can create a different one. I read an article

about Fox who has Parkinson's and found his attitiude wonderful. He's at

a point where he can look at his disease as a gift. I can tell you I'm nowhere

near that but I think I can accept that I will need to evolve. Just my thoughts

here on the subject....

Wishing everyone comfort and hope today and through the weekend. I have a social

engagement that will undoubtedly require more pain meds. I'll probably get back

to my PC early next week. Hello to all newcomers..

marrielle

Re: [ ] What To Do Now

Hi Susie,

I am so sorry you have lost so much to this disease. I lost my job and a

whole career. This disease changed my whole life.

[Guest guest]

Hi marrielle, I liked Fox's attitude too, and it came at a time when

I sure needed an attitude adjustment to get away from total self pity...I've

lost a lot of my old life too; but focusing on creating a new life, new

interests, new hobbies and mostly new way to do things sure has made a

difference in my quality of life...thanks for the reminder about

...it was a real turning point for me awhile back...hope you have a

wonderful weekend...it certainly is a process...hour by hour

sometimes....marge

Re: [ ] What To Do Now

>

>

> Hi Susie,

> I am so sorry you have lost so much to this disease. I lost my job

and a

> whole career. This disease changed my whole life.

>

>

>

[Guest guest]

Hi Marge..oh you're so right about this disease being an hour by hour process

sometimes. I'm glad you've found new hobbies..I'm trying to do that now too. I

used to do lots of needlework and knit too but it's too painful now. I am

managing to keep sewing a little as it doesn't require my grip as much. That's

what's going now is my ability to grasp small things and any repetitive motions

are too much. I'm also doing large jigsaw puzzles and have started to read more

as well. Wishing you a good weekend too..

marrielle

Re: [ ] What To Do Now

>I've

lost a lot of my old life too; but focusing on creating a new life, new

interests, new hobbies and mostly new way to do things sure has made a

difference in my quality of life

[Guest guest]

Hi Marielle,

I also love to do jigsaw puzzles. I do them on the computer though. It is

much easier to click than to try to pick up those little pieces. I have

found CDs called PuzzleMaster from egames and they are wonderful. You can

find them just about anywhere that sells computer games. I get them from

Walmart for about $10. They keep me busy as you can change the shape, size,

and number of pieces that you want. There are several versions also. And

you never have to look for that " lost " piece that is always under the sofa

somewhere. Hope you will enjoy them too.

Love and Hugs,

Stacey in PA

[Guest guest]

Susie,

How long were you taking methotrexate every day?

a

[Guest guest]

Hi Stacey..I'm going to look for the Puzzle Master software that you speak of.

So far, I play the daily jigsaw at Shockwave but I haven't tried any software

for virtual puzzles, thanks for the tip..they sound great! When I finish a

puzzle I put it up on my pages which are here if you'd like to have a look at

them.

http://maryel.tripod.ca/index.html

Take care..

marrielle

Re: [ ] What To Do Now

>Hi Marielle,

I also love to do jigsaw puzzles. I do them on the computer though. It is

much easier to click than to try to pick up those little pieces. I have

found CDs called PuzzleMaster from egames and they are wonderful. You can

[Guest guest]

hi there

that is really lovely marielle...i enjoyed the images...care to share where

the lakes are or are they not from your area?

nice web page

Sam

Re: [ ] What To Do Now

>

>

> >Hi Marielle,

> I also love to do jigsaw puzzles. I do them on the computer though. It

is

> much easier to click than to try to pick up those little pieces. I have

> found CDs called PuzzleMaster from egames and they are wonderful. You

can

>

>

>

>

>

[Guest guest]

Thanks for the compliment sam :-) Lac Moraine is in Alberta and Pino Riviera is

part of the coast of France. I live in Quebec so neither applies although the

wolf puzzle is a painting by a Quebec artist, Sylvain Tremblay. I'm trying to

find a puzzle by another artist of children skating on a pond. I don't know the

artist's name but I'm searching for the puzzle anyway. Hope you had a nice

weekend!

marrielle

From: dot.com

Sent: Sunday, July 14, 2002 10:19 AM

Subject: Re: [ ] What To Do Now

>that is really lovely marielle...i enjoyed the images...care to share where

the lakes are or are they not from your area?