Re: Welcome, Al!

[Guest guest]

Hi ,

Thank you. I must admit, your group has some pretty prolific writers.

I can hardly keep up..

I'm hanging in there. One thing that is new is I tend to have many

more " blue periods " than in the past. I have been pretty upbeat

considering but tend to feel down often. I also wonder if it's

emotional, physiological and/or both?

What have others done when feeling this way? Please let me know.

Wishing everyone a pain free day.

Al

> Welcome to the group, Al!

>

> Sorry to hear about all of your diagnoses, but I hope you are coping

> well.

>

> Looking forward to learning more about you,

>

>

>

>

>

> [ ] Re: Some Sunday Afternoon...........

>

>

> > Jan,

> >

> > Best of luck to you. I know how difficult it can be while

undergoing

> > a diagnosis. It took me 2 years to be diagnosed with Still's

Disease

> > going through one elimination test after the other. Luckily I

finally

> > found a great Rheumatologist. Since then, I have been diagnosed

with

> > RA, Sacrolitis, Osteoporosis and Scoliosis.

> >

> > What made my situation even more complicated is that I was a 34

year

> > old male. So, in answer to your question, yes there are men out

> > there, other than husbands... that can empathize with you.

> >

> > I am new to the group. I found you today as a matter of fact and

> > wanted to say hello to everyone. Although I have a wonderful

support

> > network, I felt it was time to start talking to others who are

> > unfortunately in a similar situation.

> >

> > Again, best of luck. Take care.

> >

> > Al

[Guest guest]

Hi Al. I have a lot of " blue periods " , too. I suppose dealing with pain on

a daily basis is a major cause. I was just diagnosed last February, and I'm

still coming to terms with having a chronic illness. For me, that's a big

factor. The medications don't help matters, either.

I know many in the group are taking antidepressants in one form or another.

Finding things you love to do, and enjoying them on a regular basis, is a

good way to help the blues. Also, service to others is a great way to kick

the blues. Some of the things I used to do I'm currently unable to

continue, but hopefully it's temporary. When you're ill it's normal to

become more self-absorbed, but looking outside of your own problems really

helps.

Warmest regards,

Carol

[ ] Re: Welcome, Al!

Hi ,

Thank you. I must admit, your group has some pretty prolific writers.

I can hardly keep up..

I'm hanging in there. One thing that is new is I tend to have many

more " blue periods " than in the past. I have been pretty upbeat

considering but tend to feel down often. I also wonder if it's

emotional, physiological and/or both?

What have others done when feeling this way? Please let me know.

Wishing everyone a pain free day.

Al

> Welcome to the group, Al!

>

> Sorry to hear about all of your diagnoses, but I hope you are coping

> well.

>

> Looking forward to learning more about you,

>

>

>

>

>

> [ ] Re: Some Sunday Afternoon...........

>

>

> > Jan,

> >

> > Best of luck to you. I know how difficult it can be while

undergoing

> > a diagnosis. It took me 2 years to be diagnosed with Still's

Disease

> > going through one elimination test after the other. Luckily I

finally

> > found a great Rheumatologist. Since then, I have been diagnosed

with

> > RA, Sacrolitis, Osteoporosis and Scoliosis.

> >

> > What made my situation even more complicated is that I was a 34

year

> > old male. So, in answer to your question, yes there are men out

> > there, other than husbands... that can empathize with you.

> >

> > I am new to the group. I found you today as a matter of fact and

> > wanted to say hello to everyone. Although I have a wonderful

support

> > network, I felt it was time to start talking to others who are

> > unfortunately in a similar situation.

> >

> > Again, best of luck. Take care.

> >

> > Al

[Guest guest]

Hi Al:

Having a disease like RA is very frustrating - up one

day and down the next - never knowing how you are

going to feel from one day or even hour to the next.

It's very easy to get down about it and feel

depressed.

There are no cures for RA now and, unfortunately,

diagnosis and then finding the right medications to

ease the symptoms sometimes takes quite a while. The

medications can also make your emotions go up and down

- especially Prednisone I have found is very hard on

the psyche but also great for the joints! Like I told

Tess in another post, it's one day at a time for me,

got to learn to roll with the punches and enjoy the

good times. The bad days seem to last forever, the

good days not long enough, but the good days do come

back around - hang in there.

Kathe in CA

__________________________________________________

[Guest guest]

Hi Kathe,

Thank you. Yes, it is extrememly frustrating and what you said is

true. You have to take everything one day at a time. In a positive

way I guess it forces one to stop and smell the roses from time to

time.

I took Prednisone for awhile but had to get off of it due to my liver

enzymes going way up. One drug that affected me mentally, as well as

physically was metho. I started having these weird almost out of body

experiences. My mind and body couldn't hook up. Has this happened to

anyone you know?

Again, thanks for the welcome. I am very happy to have found this

group. You all are extremely compassionate and thoughtful individuals.

All my best,

Al in IL

> Hi Al:

>

> Having a disease like RA is very frustrating - up one

> day and down the next - never knowing how you are

> going to feel from one day or even hour to the next.

> It's very easy to get down about it and feel

> depressed.

> There are no cures for RA now and, unfortunately,

> diagnosis and then finding the right medications to

> ease the symptoms sometimes takes quite a while. The

> medications can also make your emotions go up and down

> - especially Prednisone I have found is very hard on

> the psyche but also great for the joints! Like I told

> Tess in another post, it's one day at a time for me,

> got to learn to roll with the punches and enjoy the

> good times. The bad days seem to last forever, the

> good days not long enough, but the good days do come

> back around - hang in there.

>

> Kathe in CA

>

> __________________________________________________

>

[Guest guest]

Hi Al:

Yes, this is a great group of people - I am glad I

found it too! It's hard to talk with other people

about what is going on with my RA - they just don't

get it no matter how hard they try and how much they

say they understand. Sometimes I can almost see my

husband's eyes glaze over as I am describing what I am

feeling in a flare LOL. However, he is there for me

and I appreciate his trying.

No, I haven't heard of metho affecting anyone like

that - I have been on it for about six months now and

luckily have no such problems as it seems to be

working well in conjunction with the Arava.

Prednisone I take only if I am in a lot of pain with a

flare - last time was about two months ago when I had

bronchitis too (figured the pred would work for my

lungs as well as my joints). I try to avoid it

because of the emotional and mind side effects but

sometimes I just need to stop the pain for a while -

it usually works within the first day - amazing nasty

little drug! How have your liver enzymes been since

stopping the Pred? I get blood work every eight weeks

to keep tabs on that - so far, so good.

Kathe in CA

__________________________________________________

[Guest guest]

Hi Kathe,

I am very glad to hear your enzymes are fine. Just remember to

continue getting your blood work done. Extremely important while

taking Arava.

My liver enzymes have been fine, but it's been a few months since I

have had a cbc. Unfortunately for me, my liver doesn't react well to

most meds. Arava was another drug I couldn't handle.

I only take prednisone when my RA or Still's flares and luckily a

dose pack generally does the trick.

The most difficult thing for me is finding something to complement

the Enbrel. I have lost a bit of weight over the past couple of

months and have been fatigued as well. I try and exercise at least 5

days a week and hardly have energy to get on a treadmill. It's scary

because I have been exercising for over 10 years and know how

important it is to folks like us.

Hopefully, I can get another med that will bring some " pep " back to

my life. It stinks having no energy.

Take care Kathe.

Al in IL

> Hi Al:

>

> Yes, this is a great group of people - I am glad I

> found it too! It's hard to talk with other people

> about what is going on with my RA - they just don't

> get it no matter how hard they try and how much they

> say they understand. Sometimes I can almost see my

> husband's eyes glaze over as I am describing what I am

> feeling in a flare LOL. However, he is there for me

> and I appreciate his trying.

>

> No, I haven't heard of metho affecting anyone like

> that - I have been on it for about six months now and

> luckily have no such problems as it seems to be

> working well in conjunction with the Arava.

> Prednisone I take only if I am in a lot of pain with a

> flare - last time was about two months ago when I had

> bronchitis too (figured the pred would work for my

> lungs as well as my joints). I try to avoid it

> because of the emotional and mind side effects but

> sometimes I just need to stop the pain for a while -

> it usually works within the first day - amazing nasty

> little drug! How have your liver enzymes been since

> stopping the Pred? I get blood work every eight weeks

> to keep tabs on that - so far, so good.

>

> Kathe in CA

>

> __________________________________________________

>

[Guest guest]

hey al, i must've missed something. welcome , i'm kathy 42 last diagnosis is

undifferentiated spondyloarthropy, fibromyalgia, glaucoma, gastritis. out by

great america. where are you from? kathy in il

[Guest guest]

on 7/24/02 1:48 PM, kb9vrq at kb9vrq@... wrote:

> I only take prednisone when my RA or Still's flares and luckily a

> dose pack generally does the trick.

Al, just curious, but how does Still's differ from RA?

Sue

[Guest guest]

Hi Kathy,

Talk about a small world! I live in Libertyville which is right by

Gurnee as you are probably aware.

Al

> hey al, i must've missed something. welcome , i'm kathy 42 last

diagnosis is

> undifferentiated spondyloarthropy, fibromyalgia, glaucoma,

gastritis. out by

> great america. where are you from? kathy in il

[Guest guest]

Hi Al

One of the meds that makes me a little goofy is prednisone at higher doses.

I take 15 mg per day and when I have a flare, sometimes my rheumy will

increase it or give me a dose pak. This is when I " lose my mind. " One day I

was driving to work, got halfway there and couldn't remember where I was or

where I was going. Nothing looked familiar. It was really frightening. I

pulled off the road and waited for it to pass. It didn't last very long,

thank goodness.

Love and Hugs

Stacey in PA

[Guest guest]

,

You have such a beautiful outlook. How is Wyatt doing?

Hugs,

Carol

Re: [ ] Re: Welcome, Al!

Hi Al,

When I'm feeling down, I try many different things to lighten the mood. One

of my favorites is to just sit and look at my son. He is the most wonderful

part of my life and I enjoy him so much. Another thing that I do is get to

the computer and contact this group and read the posts. I feel " connected "

here and there is always someone here who makes me smile and put things into

perspective. I always try to remember that God will never give me more than

He knows that I can handle. Its not always easy, but as long as I wake up

every morning and remember to breathe, sometimes that is all it takes to

make

the day a success.

Love and Hugs

Stacey in PA

[Guest guest]

Hi Stacey,

You have a great outlook on life which is wonderful. I agree that we

have so much to live for, so much going for us even though we have so

much to endure.

Thanks for putting things in a proper perspective.

All my best,

Al

> Hi Al,

> When I'm feeling down, I try many different things to lighten the

mood. One

> of my favorites is to just sit and look at my son. He is the most

wonderful

> part of my life and I enjoy him so much. Another thing that I do

is get to

> the computer and contact this group and read the posts. I

feel " connected "

> here and there is always someone here who makes me smile and put

things into

> perspective. I always try to remember that God will never give me

more than

> He knows that I can handle. Its not always easy, but as long as I

wake up

> every morning and remember to breathe, sometimes that is all it

takes to make

> the day a success.

> Love and Hugs

> Stacey in PA

[Guest guest]

Hi Kathy,

How about that? It's nice to have someone close by. That way we can

talk about events that are near and dear to both of us. Like, will it

ever rain again for more than an hour? LOL

How is the humidity affecting you? It really makes me sluggish and

causes my legs to ache.

Your neighbor in IL

Al

> wow it is a small world. that is not far at all. your neighbor!!!

kathy in

> il

[Guest guest]

Hi Stacey,

I had a similar experience using methotrexate. I was driving home

from work made a left turn and just kept going left although my mind

knew I was going into an incoming lane. Thank God nobody was there. I

stopped taking it shortly thereafter.

The most prednisone I took was 5mg a day excluding the dose paks I

take for major RA/Still's flares.

In fact, I may need to take some today. For the past month my legs

have been heavy, I have been extremely fatigued and have been losing

weight. I also have pain at the base of my neck on a daily basis.

Unfortunately, my rhemy is booked and I have to see a new GP that I

have never seen before. This should be good. Wait until he sees my

file! LOL

Have a great day.

Al in IL

> Hi Al

> One of the meds that makes me a little goofy is prednisone at

higher doses.

> I take 15 mg per day and when I have a flare, sometimes my rheumy

will

> increase it or give me a dose pak. This is when I " lose my mind. "

One day I

> was driving to work, got halfway there and couldn't remember where

I was or

> where I was going. Nothing looked familiar. It was really

frightening. I

> pulled off the road and waited for it to pass. It didn't last very

long,

> thank goodness.

> Love and Hugs

> Stacey in PA

[Guest guest]

hey al, well it must've rained here. there were spots all over my car i just

had washed!!! (kinda why i washed it.)yes, the humidity does me in. i was

really depressed over 4th of july watching other families have fun. oh well,

one day at a time and we had a couple nice ones. it felt good to get outside

and open the windows for a change. i'll be gone most of the weekend with my

parents anninversary party. i'd say my favorite time of year is autumn. cool

weather, less humidity, beautiful colors. i sent off my letter to my prior

employer waiving my appeal time since my attorney is going out of town. she

was afraid she would not be here to intervene. so i sent a more detailed

reason why i couldn't do my job. (that i didn't feel dependable enough) that

i felt i would have already been on long term but they talked me into comming

back and they would give me an adjustable desk so i could stand and sit. i

went back being a dedicated employee. they never did. my feet couldn't take

it. i had both feet operated on and it didn't work as well as we hoped and i

am still having problems. that my immune system can't handle the more potent

drugs and my body can't handle the stresses of working. that it's not that i

don't want to work. tha it is hard for me to accept to be disabled at 42.

that it is very stressful for the entire family, then to have your benefits

and living expenses dropped. that is extremely stressful. i hope that makes

them see what they have done. kathy in il rambling again!!!!

[Guest guest]

hey al, i was wondering who your rheumi is?? kathy in il

[Guest guest]

Dear Al...I understand the leg heaviness. Sometimes it feels like I'm

pulling cement blocks. I sure hope you get some relief, soon.

I got a kick about the comment about your file. I always chuckle (under

my breath) when they have to hoist up that puppy and they look at me as

if to say, " THIS is ALL yours?!?!? "

Hugs & Hope...

Tess

[Guest guest]

Hi Tess,

You hit it on the head. It's like cement.

Unfortunately, I have been placed in doctor " limbo " at the moment. I

tried to get in to see the GP because their office told me yesterday

to call and they could squeeze me in. When I called, they said " no

the doctor's booked, sorry. " I told them what I was told to no avail.

You would think they would want to accomodate a person with RA who

has been dizzy, losing weight, and suffering with leg and neck pain

and fatigue for a couple of weeks. Silly me...

I then called my rhuemy to find out she is off today but left a

message for one of her nurses to call me. So here I patiently wait

trying to get some work done.

Sorry for my rant. It just can get so frustrating at times...

Al in IL

> Dear Al...I understand the leg heaviness. Sometimes it feels like

I'm

> pulling cement blocks. I sure hope you get some relief, soon.

>

> I got a kick about the comment about your file. I always chuckle

(under

> my breath) when they have to hoist up that puppy and they look at

me as

> if to say, " THIS is ALL yours?!?!? "

>

> Hugs & Hope...

>

> Tess

[Guest guest]

thanks but i am only going to hoffman estates so i'll just be dressed up in

that heat tomorrow, probably wearing illeagal shoes too. i have some codene

ready to go with me. actually social security disability went really quick

for me. i was approved in 6 mos. it's my company i am having a hard time

with. i can't believe they are fighting this hard for $50 a month plus my

benefits. sometimes i wonder if it is worth it. money wise all it does is pay

my cable bill and i think it would prevent me from a part time job that might

help me more finacially. maybe more self esteem too, but i really don't know

how long i would last. gotta admit. i feel pretty worthless right now. for

this they had people follow me and video tape me? whatever.... i will be at

poplar creek this weekend. too bad eric clapton or steely dan won't be. i

miss that theatre. kathy in il

[Guest guest]

i had a feeling it was her. yes she has been my rheumi since 1997. she is

quite wonderful and compassionate. be pretty funny if we sat in the waiting

room together. kathy in il

[Guest guest]

sorry to hear you are having a rough time al. i just increased my prednisone

to 7.5 mgs a day so i've been eating and gaining the weight you have probably

lost. my appt with her is sept 12. if it would help to switch ( i would

sure hope not!!!) let me know, as them to put you on the cancellation list.

hang in there. marianne will get to you soon!! kathy in il

[Guest guest]

Dear Al...Ranting is A-OK here...you have a GOOD reason to rant! I hope

& pray one of your doctor's gets with the program, and soon! Please

know you're in my heart & in my prayers.

Hugs of Hope...

Tess

[Guest guest]

Hi Kathy,

That explains the rain.. Hopefully you will go somewhere cooler

this weekend. The humidity is supposed to be real bad. I can hardly

wait! LOL.

Like you, I love the fall. The coolness in the air is nice. And, as

you know, the colors around here are great.

I am so sorry to hear about all you are going through. Although none

of us hope it will ever happen, was it difficult initiating the

disbility procedure? It sounds like they are continuously making you

jump through hoops which is a shame. Don't ever feel you need to

apologize discussing what you are going through. That's what we are

here for.

I hope you have a good time at your parent's anniversary.

Al

[Guest guest]

Hey Kathy,

Her name is Dr. Capezio, from North Shore Rheumatology, and

she is great. Extremely busy practice though.

How about you? Please let me know.

Al in IL

> hey al, i was wondering who your rheumi is?? kathy in il

[Guest guest]

Thanks Kathy. Also, thanks for the offer to switch. I have a

September 9 appointment but my GP wants me in sooner. I went and saw

him yesterday and had blood work and chest x-rays taken. I have to go

for respiratory therapy also because it has been hard to breath.

Never had allergies. Fear is that the systemic nature of RA is now

attacking my lungs. They gave me an inhaler to help but my GP's

suspision is that it's the RA.

After the doctor's I slept on and off for 15 hours which I haven't

done in ages. I also had a slight temp, so my body is definitely

fighting something. Probably itself, as usual. I'm doing a bit

better, but can feel the shakiness coming on.

That's great that you see also. I absolutely love her. She's

the best. I also like nne cause she seems the most knowledgable

and has helped me out considerably. Ginger and the girls in front are

nice also.

It's funny that you mentioned Poplar cause a friend of mine went and

saw Lenny Kravitz at Tinley Friday night. I told him that the one

outdoor theater I really miss is Poplar. I saw Clapton there a few

years ago, the Kinks, Fogelberg and a few others. It was great.

I hope that you are doing well and finding some relief from the heat.

Take care,

Al

> sorry to hear you are having a rough time al. i just increased my

prednisone

> to 7.5 mgs a day so i've been eating and gaining the weight you

have probably

> lost. my appt with her is sept 12. if it would help to switch ( i

would

> sure hope not!!!) let me know, as them to put you on the

cancellation list.

> hang in there. marianne will get to you soon!! kathy in il