Jane

[Guest guest]

News on Jane's surgery

>Hello everyone

>I heard from Jane today, and she is doing well. She came thru the operation

>with flying colors, and is recuperating. From what I could tell, she is

also

>giving them hell, so we can be sure that she is on the mend, and will be

>thrown out of there soon. Actually, she will be going to a rehab center for

>the next stage of her recovery. I will keep you all posted as I hear...

>Jerry

>

[Guest guest]

Thanks Jane,

It seems like Ive been to the dentist more than the doctor.

I'll probably have dentures before Im 40. LOL Hope not.

Im not on the codeine anymore, but I still have weird dreams.

But then, Ive always had weird dreams..I think its called a " wild "

imagionation. Thanks for your reply.

Kay

[Guest guest]

Hi Jane: Doctors have been telling me that there is no proof that

autoimmune disease run in families. Well, I beg to differ, I had to have my

thyroid removed when I was 11 years old because of a goter. My mother has

ITP and my daughter has AIH. I didn't realize until just a few weeks a go

that the thyroid had anything to do with autoimmune disease until I pulled up

the subject on the net. At the time I was told that I was one of the

youngest to have that surgery. I went for years without needing any

medication then all of a sudden I started losing my memory. It got to the

point I couldn't find my car in a parking lot and I couldn't remember what I

had for lunch. I thought I was having a nervous breakdown because I was

having problems with my son at the time. When I went to the doctor and the

blood work came back he was amazed that I hadn't needed medication before

then.

Talking about weight loss and the thyroid, I was thin as could be until

they removed mine. From then on I have always had to watch what I eat. It

doesn't help that I'm 5'2 " either. LOL

We haven't talked I don't think but I found your post very interesting.

Thanks and take care.

Genny/Jodi's Mom/AIH

[Guest guest]

Dear Jane, I've often said the same thing about heaven and hell, especially

when I'm in pain, physical or mental. Both are bad and at times, I'm not

sure which one is worse. I'm sorry you are having so many " kid " problems.

I guess it boils down to no one has the " perfect " family. It may seem that

way from the outside, but believe me the more you get to know someone, the

more you realize they have their own set of problems. Not that I wouldn't

mind dealing with life with out the pain of PA, Fibro, Asthma, TMJ,

Erythromelalgia, Disc disease, Osteoarthritis, Osteoporosis, and just when

you think you've listed them all, you remember IBS...lol. Sometimes it

feels like a great big cosmic joke. I told my sister once when we were

younger that I thought before you were born you " signed up " for certain

problems or challenges to overcome in your life. She suffers from really

bad alcoholism. She is healthy other than that and compared to me, she is

the bionic woman. She said while I was busy signing up for health problems,

she must have been drunk and got in the wrong line...lol. All I know is

with all I have wrong with me, I wouldn't trade places with her for a

million dollars. Even with my health problems, her life has been so much

harder due to alcohol. She is just now facing it again with her children

who are teenagers. So it's one of those diseases that keeps on giving.

I'm not saying you should feel sorry for you son. I'm sure you are

frustrated and ready to scream. I know I've been there so many times with

my sister there were times I couldn't even talk to her. Even now if she

calls me drunk I just get off the phone as soon as possible. Getting your

son into the programs early can make all the difference. Hopefully he can

make the decision to live his life without it and have a life. All the time

my girls were growing up, I never hid my sister's problems from them. I let

them see what alcohol could do to a person and how it affects so many more

than just the person drinking. So far I've been really lucky with my girls.

I know they have parties and my oldest one has had a lot of fun in college.

My youngest has health problems and can't really drink more than one drink

due to her medication. So again I've been lucky so far, though I try not

to take anything for granted anymore. I hope you can help him, but go to

Ala-non for yourself. They don't tell you to cut that person out of your

life, more likely they give you help on how to live with them in your life.

It did help me when times were really bad with my sister.

On the epidurals, thanks for the information. I'm glad I'm not the only one

who has tried these and think they help. So far since this is just my first

set, we haven't gone over how many I can have. I was sort of hoping that

one would do the trick..lol. I know that is really positive thinking, but

it doesn't hurt. I was amazed at how the epidural wasn't a big deal at all.

I have been comparing them to the stellate blocks I had done on my neck, and

those were miserable. I hope this helps and I still need to get one more

MRI accomplished to find out if they can inject my lower back.

I agree that stress sets us off. I don't know why, but with Fibro it makes

sense that you tense up your muscles and then they hurt the next day. My

TMJ is the same way. Trying to stay calm in the face of disaster isn't

easy. Talking about it helps and please write me anytime you want to talk.

It's hard to deal with all of this and keep it inside. Just being sick with

PA is enough stress for me, but somehow we seemed to have " signed up " for

the graduate classes..lol.

Hope things improve for you soon Jane and keep in touch. Love, Fran

RE: [ ] Back and neck pain, and fatigue

Hi Fran,

Glad to hear you're getting the epidurals. I've been

through two courses of three shots (you have to wait 6

months inbetween according to my pain doc, which

coincidentally seems to be about how long they last).

My last series was in February and I'm feeling it's

time for another go around. I'm uncomfortable and in

pain 24/7 in my lower back. I've talked to the rheumy

about it before, he doesn't think its arthritis there.

The surgeon I saw said it's definitely arthritis and

the herniated discs aren't bad enough for him to try

to fix. All I know is that it hurts no matter what I

do. So maybe I'll give myself a Christmas gift of

another round of epidurals as I should have a little

time off from work then to travel for the injections

Stress and the cooler pre-winter (I hope) weather seem

to aggravate my body. My right ankle keeps swelling

more, when I see the rheumy in a couple of weeks this

will be the " new " swelling to show him as it was okay

until the end of September. I'm doing better at

resting, taking Ambien every few nights so I get an

occasional good nights sleep without building up a

tolerance.

Overall, I think that having children are the greatest

cause of stress. Last week, my husband and I went to

court to get custody of his youngest daughter and we

were both so happy that we wouldn't have to be in that

courthouse again. Within the hour I received a call

from the resource officer at the high school telling

me that my son (age 18) had blown a .02 on a PBT. So

yesterday we were back in court, he's free on a PR

bond, went to first AA meeting last night, going to

counseling today, etc. It was his third MIP in the

last three years (a fourth is pending in appeals

court), and I'm so sad and disappointed. We had been

looking at colleges, but I just can't see sending him

away to art school to live on his own and face his

demons.

There, I feel somewhat better now having vented,

despite my throbbing ankle, aching back and sore

fingers. Why does life have to be so full of

challenges? Why can't I ever be the person to be

healthy, happy and have the good life free of stress

and worries. There'd better be a heaven, because I

fell like I'm already in hell.

Warm blessings, Jane

[Guest guest]

In a message dated 11/2/04 8:22:56 PM GMT Standard Time, fran@...

writes:

I told my sister once when we were

younger that I thought before you were born you " signed up " for certain

problems or challenges to overcome in your life.

Hi Fran,

Yes, I can remember signing up but I distinctly remember writing down " sore

finger " lol I think they overdid it a bit.

[Guest guest]

Clare- what a lovely name. St. Francis and St. Clare are both very

precious to me- I love their life stories. Yes, my darling daughter

had a lovely birthday. We shopped like madwomen, thank you! Her best

friends took her for a late dinner that evening, so she had a

wonderful time. She is a precious child. I suppose since she's 18 one

should consider her a young woman. Oh well. I have had a rather

tough few days, my remicade had to be delayed for a little over 2

weeks due to a respiratory bug I was being treated for. I try to keep

my sense of humor about all of it-

i think back 15 years ago when i still wore spike heels and short

skirts & went dancing at the drop of a hat. Now I wear flats- comfy

ones at that, matronly skirts, and I avoid dropping hats as they're

too darn hard to pick up nowadays!

Have a blessed day, look forward to visiting with you again.

Hugs from Texas!

jane

> > >

> > >

> > > Dear All,

> > >

> > > Have been reading and not posting of late due to bad hands etc

> but

> > > wanted to say hi again and thanks for being such a kind, caring

> > > group. That may sound corny but during days over the last week

> or

> > so

> > > when sitting a the pc is all i could muster, it gave me comfort

> and

> > a

> > > feeling of support by just reading the messages. I can identify

> so

> > > much with so many of you and my heart goes out to you for all

the

> > > suffering you endure every day. Despite this i feel that we

keep

> > our

> > > sense of humour, cherise the good days and vent our frustration

> at

> > > the bad ones. I've found it very interesting to compare the

way

> in

> > > which we are treated on different sides of the Atlantic, the UK

> has

> > > the NHS and i am very lucky to have a good rheumy (hadn't heard

a

> > > rheumy doc get called that before! Much better than saying and

> > > spelling the whole thing!! Thank you!)doctor and consultant but

> > > although our healthcare is free (we pay through national

> > > contributions when we work, tax basically) not very many people

> in

> > my

> > > area in Cornwall (South-West England) were allowed Remicade or

> > Enbrel

> > > because of a funding crisis (they say it's costs £10K per year

> each)

> > > which is crazy in this day and age. Is it the same in the US

with

> > > insurance companies paying depending on what they cover? Nobody

> > > should have to suffer because some big-wig in a suit decides

it's

> > not

> > > covered, maybe they would like to spend a week in a flare-

> up....no

> > i

> > > doubt it either. I've been reading the posts about insurance

> issues

> > > and wonder how some of you don't go out of your minds with

worry.

> > >

> > > Also read posts about the British tv programme " Keeping Up

> > > Appearances " ! They still show it here too and although i've

> > probably

> > > seen them all i just love that show......and yes there really

are

> > > ladies like that here!!

> > >

> > > Had my first treatment of chemotherapy for lymphoma last

Thursday

> > and

> > > doc's gave me 5 days of steroids at 75mg per day, along with

the

> > > Rituximab, Chyclophosphamide (could well have too many letters

> > there,

> > > not sure!!) and Vincristin. It was ok and side-effects

managable

> > > too. The steroids have knocked the RA out for a minute and i

am

> > > relishing the energy and pain-free days! Took my puppy Ky for

a

> > good

> > > long walk (well long for me, round the whole field!!)in the

> winter

> > > sunshine this morning, something i've missed doing of late, and

> > felt

> > > really positive for the first time since i was diagniosed just

> > before

> > > Christmas. Maybe the steroids but decided that life is for

> living

> > > now, somethings i do may not be good for my RA (like ice-

skating

> > with

> > > my daughter for her birthday recently, half killed me but boy

was

> > it

> > > fun!!) but are good for my soul and well-being. We're all so

> much

> > > more than just our diseases, that obvious when you read the

> > messages

> > > here and i'm glad i have found a place to come and write what i

> > feel

> > > amongst friends who understand. Thank you again.

> > >

> > > Best go to bed now, it's 1 in the morning over here and i just

> came

> > > down for a read and hot chocolate!!

[Guest guest]

This subject is one that is near to me but not near and dear as I was subjected

to the sexual and child abuse during my childhood. The sexual went on from age

7 until age 12 when I was able to make a stand though the perpetrator continued

clear into my 20's to try to convince me it was what " I " wanted. This was at

the hands of my mother's husband. The physical and emotional abuse was from

ages 7 throughout my teenage years from my mother...especially after she learned

about the other and decided I was trying to " take " him from her...I was never

forgiven. It was the last thing I ever wanted in my life and would never want

anyone else to go through it. My family (aunt in particular) turned a deaf ear

and I was able to ask her about 18 years ago before she died why the family

never took steps to stop it. I was told in essence you did that in those

days...didn't admit it was happening and therefore it wasn't. I was also told

that I survived and should leave it in the past and

forget about it....I was a big girl. I found the experience shaped my whole

life...some good and some bad. The bad I am still working on and it is receding

into the past... The good is in that after my own daughter was molested by a

" family friend " and she carried the secret for 7 years even after admonitions

all her life to never let anyone touch her inappropriately and that I would take

care of it immediately if it ever happened, I no longer remain silent or keep it

within the family. He had convinced her he would kill me and her younger sister

if it came to it..... This is a horrible crime against not only the child

involved but the whole community. What is done for those children now in the

way of recovery will give them the tools for a better lived life free hopefully

of insecurities and desperation. I hope you are able to seek and get the help

they need. I will most certainly keep them and your family in prayer. I do not

believe this is something a molester can bury

and be free on probation with. So with a gentle reminder from the Good

Word.... " ...where more than two are gathered together in my name, there I am

also. " With unity in prayer from so many, there just has to be a good ending to

this.

With love, ((((HUGS)))) and prayers..

(I don't feel like the SMILES with reading this today)

JAN in AZ (formerly CA)

~ " We all take different paths in life, but no matter where we go, we take a

little of each other everywhere. " ~ ~ " If I could reach up and hold a star for

every time you've made me smile, the entire evening sky would be in the palm of

my hand. " ~

[Guest guest]

Hi Jane:

I'm sorry to hear that you are having a rough time

right now. I know how you feel about having to change

plans that have been made - it's hard for my kids to

understand when I cancel plans too. Try not to stress

too much about it - these girls are old enough to fend

for themselves while you rest from time to time. I am

sure that their chatter will take your mind off your

pain for a bit - take care

Kathe in CA

--- JANE <janeatregis@...> wrote:

> Hey yall. Sorry not to have posted in a while, I

> haven't exactly been

> good company. So far the enbrel is not really

> kicking in, matter of

> fact I'm working through yet another flare. Chas is

> coming home this

> weekend for homecoming, and we'd planned for her to

> bring a couple of

> friends from college. She knows I'm not doing so

> hot, and told me she

> would make other arrangments for her friends. I told

> her it would be

> fine, just bring them on. I get so tired of having

> to tell her that

> I'm not up to doing things, I will make it one way

> or another. All my

> Bible study girls will be home from college and I

> just want to be

> able to enjoy being with them instead of hurting too

> bad to think of

> anything else. It seems like if the arthritis isn't

> flared up then

> the FMS is; I get so tired of this constant battle.

> Hoping and praying better days ahead for all of us.

> Jane

>

>

>

Kathe in CA

__________________________________________________

[Guest guest]

Jane, no problem.

Having a great support system is half the battle I think and a great

doc too! Now to just go in remission would be fantastic.

Even with the best of circumstances this condition is still a lot to

take in. Any chronic disabling condition would be actually. So we

can so relate to your concerns.

I am a transcriptionist. I took this job thinking I could one day

return to studying medicine and this would keep me up-to-date on the

terminology. It was also something I could do from home to care for

my total care daughter but at the same time the RA was out of

control and attacking me heavily so I am not so sure I was any good

to her. She is no longer with us and I beat myself up now and then

especially anniversaries and holidays about if I had been a healthy

mom she might still be here. But the transcription job helped me to

keep busy, feel useful, and keep the terminology but that is as far

as it ever got. I was preparing for physician assistant school when

I developed RA while living out in California. I had just finished

an EMT program because I heard patient care would get me into the PA

program faster when I started developing symptoms and at the same

time my daughter was regressing. I abandoned my goals (temporarily)

moved back to my home town to get help from the family for my

daughter, so I thought. So like you I had to find a new identity to

deal with being disabled. Sometimes wonder if the vaccines brought

on the condition. I felt lightening had already struck in my home

once when my healthy daughter with Apgars of 9 and 9, the highest

given, started to regress at 14 months. So surely I was not going to

be sick too and with such a severe form of RA. The doctor who

finally gave me a diagnosis in 96 said it could be a virus that

mimics RA symptoms but she didn't think so. She referred me to a

rheumatologist who said it was RA. I went into denial and stayed

there for 2 years. I had a sick child to care for, I couldn't

afford be sick with such a diagnosis. I took the NSAIDs given,

however.

So, yes can totally relate to learning to be the one on the

receiving end of care instead of the one giving care. Not exactly

the life I had in mind. However, caring for my daughter kept me

strong (she needed me) and I got to be the caregiver in some ways

with very limited knowlege. I went to the neurologists, PTs, and

OTs, etc for extra help she needed but was never satisfied with the

level of care she received. Plus traveling with my husband's job

was the worst thing for her as well. She got worse while living out

of the country. We moved often and settled here in Ga in 2000. I

am ready to leave, however. Dislike it very much here and want to

live near s Hopkins Hospital. So planning a way to make that

happen. I think I will then be satisfied with my level of care,

although I realize there is good and bad care everywhere.

Also, i got that " but you don't look sick " the first 5 years into

the disease. I actually looked 10 years younger than my age. I

wish for those days again, hospital stay, anesthesia, strong meds,

disease, frowning from the pain, took all of those 10 years away in

an instant. So take it in and enjoy them saying but you don't look

sick because the other side of the coin is they start to feel sorry

for you when you are visibly disabled and you become invisible.

Take tons of pictures. I have very little pictures of myself when I

was healthy and didn't look sick, It's been since 96 so the hands

finally developed both the boutonniere deformity and swan neck

deformities (I thought you only got one or the other) plus fused

joints and nodules on the second joints of most fingers. It looks

awful and I just turned 44. I was 31 when this all started. I keep

saying I am too young to be this severely disabled. Yet, I realize

with dwelling on what you can't do will take you on a downward

spiral to depression so I try to focus on what I still can do and

always searching for a way to go into remission while I am still

walking on my bone on bone hips. Hopefully s Hopkins can fix

that.

Well better go. All the best. Hang in there.

Ebony

> Hi Ebony

> thanks for the response. I'm very lucky I have a very supportive

husband. I do see a counselors and discuss my feelings. I'm

feeling better today so I'm more up emotionally. I find it hard to

commit to anything so volunteering is difficult. I have lost

friends also because I make plans and am unable to follow through.

Its difficult for people to understand doctors also I'm sick of

hearing ' but you look good.' I find my looks really do not indicate

how I feel or my pain level. I do have a great Rheumatologist. I

just have a lot of fear. I don't know what is going to happen or

how disabled I'm going to get. I never imagined myself disabled.

I'm a nurse and just that statement says it all. I'm trying to

learn who I am and how to be the patient. I often feel very

useless.

> It sounded form your E-mail like you have moved around a lot.

That has got to be tough. Especially trying to reestablish

relations with doctors.

> Thanks again for responding.

> Jane

>

>

>

[Guest guest]

Jane, I hope like hell it was peanut butter! Hugs,Teri From: Jane <janes6749@...>To:

Sent: Tue, June 29, 2010 1:08:01 AMSubject: Re: [ ] I ate again!

Teri, yea that was me. That one memory I won't forget hugging the ceramic bowel all night, all day, all night.... but I want to believe that it is something else that caused the reaction, maybe peanut butter, anything else!!!!

From: Teri Gottlieb <theresagottlieb> Sent: Mon, June 28, 2010 10:40:03 PMSubject: Re: [ ] I ate again!

Jane,

I was just thinking here... if I remember correctly didn't you have some pretty violent reactions to your first shot? Weren't you throwing your guts up and needed IV fluids? That was you right? If so that was the first indication that the tx and you weren't going to get along. Your body knew it was allergic and got it out.

Strange how our bodies work......

Teri