Re: I would love to email someone with RA at my age 38.

[Guest guest]

Hi

Im 32 and a single parent i am almost 2 years diagnosed, and i know its hard!

when i was first diagnosed i worked 30 hours as a underwriter for car insurance

and i also worked as a bar maid at night roughly 30hours (sometimes more or

less), my feet were like balloons and i could barely wear shoes either never

mind be on my feet all night in a busy bar also my hands have until recently

been my worse affected area and in the bar i had to waitress, so when i said i

couldnt carry trays i wasnt very popular.

Things seemed to get worse before they got better and so i took the decision to

leave the bar and return to full time work 37.5 hours in my day job, for a good

while that worked my feet gave me a lot less bother but my hands were always

bad, during this time i started on sulfasalazine and lodine. In the midst of all

this was my son hes 7 and he had needs too, the school run, going to swimming

lessons and anchor boys so although i left my 2nd job things didnt get much less

hectic.

Cue january this year when i started methotrexate to no avail, i also had

steroid injections in my hands, they were a miracle and when they wore off the

tried to put them in my shoulder saying it was a bigger joint and i may get

longer relief, the day after my second one i could hardly use my upper body, my

neck and upper back was on fire so i went home sick from work thinking it was a

side effect, the next day i went back to work only to be a lot lot worse and

have to leave work again in tears, it was also my sons birthday so i didnt want

be ill, i called my physio who told me to come and see her, where she then

advised my neck had all gone into spasm, gave me a soft collar and some

exercises and refered me for hydrotherapy, i ended up off sick for 3 months,

that has always been my greatest fear i have worked with some terrible pain and

refused to bow down to this.

So here i am now, back at work on long term reduced hours (it will be january

before i resume full time and only if i feel fit to) and my attitude has

changed, im no longer prepared to push myself til im exhausted or the pain is so

bad my weekends are ruined because im in bed and for me thats the key, ive

accepted im not super woman, i can no longer iron (my mum does it) sometimes am

too stiff to cook (again my mum steps in or i have a nice take away menu) and my

house is tidy but not immaculate any more, and boy do i feel great for it.

The things i do to deal with this are, prop cushions under my mattress so if my

feet swell at all they will go down over night, sleep with my collar and splints

on which means i wear them less through the day, i have lavender in a bag on my

radiator to help me sleep ( i also take amotryptiline), i get in the bath first

thing in the morning, sometimes its a mission but it does ease my stiffness, i

swim every sunday while my son is at his lessons if i miss it my hips and knees

are so stiff i realise the benefit which encourages me to go back, on a really

stiff week i swim an extra day, if i have something on in an evening i have a

really easy day so i can get through the night, when im really fatigued i go to

bed for an hour or two and if my son is home i put the tv on and give him juice

and something to eat and tell him when to wake me up, he doesnt complain at an

hour of uninterrupted tv!

Most of all i accept that im no longer as fit as others but im definitely not

incapable either, i have arthritis, arthritis does not have me, im hoping the

bad days will get fewer and make room for the good days but ive also learned i

have to take more steps to make the good days

Im sorry if i went on but i hope you can see its not all down hill it just takes

time! Feel free to e mail me direct it always helps to know someone knows what

you are going through

Sharon xx

[ ] I would love to email someone with RA at my age 38.

I have been diagnosed with RA 3 months ago. The medication I feel is

not working, and now I have more sites that have started to hurt. I

have 2 children and work a 40 hour week as a radiation therapist.

The job I have is very physical and this past week has been so hard on

me. I have bought shoes that were $160 a pair and it helps some, and

sometimes my feet are so swollen and are very painful it is hard to put

any shoes on and to even walk barefooted.

Does anyone have any suggestions about getting going in the mornings?

I have to be at work at 8am and it is so hard. But the weird thing is

by about noon I walk fine with very little limping. Now, this past

week has been horrible.

Please any insight, advice I will greatly appreciate.

thank you

[Guest guest]

,

I am so sorry to hear about your diagnosis. I hope that you have

started taking something for your RA. The meds do help a lot with

the inflammation. Mornings are the worse! I get up 4 hours before I

have to be at work because it takes so long for me to get myself

moving, ready and drive an hour and 15 mins.

My heart truly reaches out to you. I wouldn't have the energy to

handle kids and myself. I have other health issues that add to the

fatigue. I just started a supplement and Enbrel, they are both

suppose to help greatly.

If your fatigue dosen't get better, please let your rheummy know.

There may be a drug change needed. Take care of yourself too. I know

your hands are full with kids and a job.

God Bless,

Shirley

--- In , " katiedidnfam " <katiedidnfam@...>

wrote:

>

> I have been diagnosed with RA 3 months ago. The medication I feel

is

> not working, and now I have more sites that have started to hurt.

I

> have 2 children and work a 40 hour week as a radiation therapist.

> The job I have is very physical and this past week has been so

hard on

> me. I have bought shoes that were $160 a pair and it helps some,

and

> sometimes my feet are so swollen and are very painful it is hard

to put

> any shoes on and to even walk barefooted.

> Does anyone have any suggestions about getting going in the

mornings?

> I have to be at work at 8am and it is so hard. But the weird

thing is

> by about noon I walk fine with very little limping. Now, this

past

> week has been horrible.

> Please any insight, advice I will greatly appreciate.

> thank you

>

[Guest guest]

Shirley, Thank you so much for your words of encouragement.

i am on 8mg of methotrexate, prednisone and an anti-inflammatory.

Until 2 days ago I asked for something for pain, something mild so that I can

work and still concentrate.  I am a radiation therapist and I need to be a

cheerleader for my patients.  I get my inspiration from them.  They are so

concerned about me and ask what have I done why are you limping,  I just say my

coworker kicked me and they just laugh.  You know here  they are with cancer and

have their own nightmare and they ask aboutme, it brings tears to my eyes.

Thank you

katie

From: nana2livi <s.p5315@...>

Subject: [ ] Re: I would love to email someone with RA at my age 38.

Date: Sunday, September 14, 2008, 8:11 AM

,

I am so sorry to hear about your diagnosis. I hope that you have

started taking something for your RA. The meds do help a lot with

the inflammation. Mornings are the worse! I get up 4 hours before I

have to be at work because it takes so long for me to get myself

moving, ready and drive an hour and 15 mins.

My heart truly reaches out to you. I wouldn't have the energy to

handle kids and myself. I have other health issues that add to the

fatigue. I just started a supplement and Enbrel, they are both

suppose to help greatly.

If your fatigue dosen't get better, please let your rheummy know.

There may be a drug change needed. Take care of yourself too. I know

your hands are full with kids and a job.

God Bless,

Shirley

--- In @gro ups.com, " katiedidnfam " <katiedidnfam@ ...>

wrote:

>

> I have been diagnosed with RA 3 months ago. The medication I feel

is

> not working, and now I have more sites that have started to hurt.

I

> have 2 children and work a 40 hour week as a radiation therapist.

> The job I have is very physical and this past week has been so

hard on

> me. I have bought shoes that were $160 a pair and it helps some,

and

> sometimes my feet are so swollen and are very painful it is hard

to put

> any shoes on and to even walk barefooted.

> Does anyone have any suggestions about getting going in the

mornings?

> I have to be at work at 8am and it is so hard. But the weird

thing is

> by about noon I walk fine with very little limping. Now, this

past

> week has been horrible.

> Please any insight, advice I will greatly appreciate.

> thank you

>

[Guest guest]

,

Hi - I don't post often here, but I read everything & I really have

come to love & rely on this group even though I am kind of hiding in

the background. I am 39 - I was dx just about a year ago with RA. I am

kind of still in denial, but the pain, swelling, stiffness & fatigue

kind of brings it back into reality on a daily basis. I have tried so

many drugs, I have lost count. I nearly landed in the ER this summer

when Plaquenil made my tongue swell up & gave me a head to toe rash. I

am now on Sulfasalizine, but only two weeks in, so no relief yet.

Anyway - I recently stopped working. I'm an accountant - I went from

full time to part-time & then my boss let me go b/c I just couldn't

keep up with the workload. I don't really blame him, but it was a huge

blow to my ego.

My life is truly exhausting - every afternoon after chasing my 2 yr

old all day, my two older children get home & then we start running

around with afterschool activities & homework, dinner, etc, etc... I

can barely move & then I can't sleep b/c I'm in so much pain.

I'm blessed to have such a wonderful & understanding husband. Even my

older children are very understanding although I feel so guilty about

a lot. My daughter (my 8 yr old) will often say to me after dinner " Do

you want to play a game or do your hands hurt to much " or " are you too

tired " It breaks my heart She recently drew a picture of her

family for school - she drew everyone doing fun things & I was in bed...

Hang in there - that's what I try to tell myself each day... you can

feel free to email me

>

[Guest guest]

I began experiencing symptoms before age 30 and was diagnosed with RA at about

35 or so. I am presently 39. Fortunately, my only child is grown- I don't think

I could manage young children.

My favorite line is " oh, if you think you're in pain now wait until you get

old " . On a good day I feel like I'm 60 years old- on a bad day I feel twice

that! I have even had doctors tell me that I'm too young to be experiencing what

I am.

I do feel that having RA has made me more aware of the blessings I do have in

life- it makes you much more appreciative of the good things, that's for sure. I

did go through a period of mourning for what I lost- and of fear for what the

future holds- but I like to think that I have achieved some level of peace with

my reality these days.

If you want to, feel free to email me offlist at mrussell@....

~Marie

[Guest guest]

Marie,

I know what you are saying. I am 57 and I am sure that you feel just

as bad as I do if not worse. I am fortunate that there is little

that I really want to do anymore. I know it can't be that way with

younger people, because I wasn't that way 20yrs ago.

Sweetie, I hope you find peace in everyday.

Shirley

>

> I began experiencing symptoms before age 30 and was diagnosed with

RA at about 35 or so. I am presently 39. Fortunately, my only child

is grown- I don't think I could manage young children.

>

> My favorite line is " oh, if you think you're in pain now wait

until you get old " . On a good day I feel like I'm 60 years old- on a

bad day I feel twice that! I have even had doctors tell me that I'm

too young to be experiencing what I am.

>

> I do feel that having RA has made me more aware of the blessings I

do have in life- it makes you much more appreciative of the good

things, that's for sure. I did go through a period of mourning for

what I lost- and of fear for what the future holds- but I like to

think that I have achieved some level of peace with my reality these

days.

>

> If you want to, feel free to email me offlist at mrussell@...

>

> ~Marie

>

>

>

[Guest guest]

When I was having radiation following a lumpectomy for breast cancer, I

had the most wonderful radiation nurse. She had the most calming effect

on me, for some reason that I can't explain. You have a very important

job.

Sue

On Sunday, September 14, 2008, at 08:22 AM, Graham wrote:

> I am a radiation therapist and I need to be a cheerleader for my

> patients.  I get my inspiration from them.  They are so concerned

> about me and ask what have I done why are you limping,  I just say my

> coworker kicked me and they just laugh.  You know here  they are with

> cancer and have their own nightmare and they ask aboutme, it brings

> tears to my eyes.

> Thank you

[Guest guest]

Thank you Sue. I love my job.  I have been in the radiology field for almost 20

years, and I count school b/c on the first day we were taking xrays.  My journey

through diagnostic radiology, angiography, mammography , I still felt that there

was something else I wanted to do.  I was offered a second interview at this

cancer center and I turned it down b/c I had found out I was pregnant with my

daughter.( I had had a hard pregnancy with my son and thought it was unfair to

the employer.) Since that time I went through breast cancer with my

mother-in-law, and it was very aggressive she almost made it to 5 years.

4 years after the second interview the job came open again and I grabbed it with

both hands!!.   It is the best job I have ever had.  I have been a radiation

therapist for 4 years now.  Technology is constantly changing. 

I know that there is a combination out there for me and the RA.  I just need

patience and to be strong until I get there.

Thanks

> I am a radiation therapist and I need to be a cheerleader for my

> patients.  I get my inspiration from them.  They are so concerned

> about me and ask what have I done why are you limping,  I just say my

> coworker kicked me and they just laugh.  You know here  they are with

> cancer and have their own nightmare and they ask aboutme, it brings

> tears to my eyes.

> Thank you

[Guest guest]

Hi !

I am 38 and my journey with RA started on my 38th birthday last November with a

case of scleritis http://en.wikipedia.org/wiki/Scleritis which eventually led to

the diagnosis of RA. This has been THE WORST year of my life. I thank my lucky

stars I have had this group to lean on the past 10 months. If not for them, I

really am not sure I would be here typing this email.

What medication are you on? One thing that SUCKS about the DMARDS is they take

forever to start working. Trust me... If you REALLY want to see if they are

working, stop taking them. More than likely you would have a very rude awakening

like I did when I had to stop Plaquenil due to Plaquenil toxicity. I SWORE it

wasnt working until about 5 days after I stopped taking it and was WHAM! thrust

back into the vicious pain cycle. I then started methotrexate (20 mg per week or

8 pills) and while it does help, I have recently started Humira and am getting

the most noticeable relief with that.

Patience is key with this disease. If you are anything like me, though, you want

things done yesterday and well.... adjusting to this disease can be tricky at

times.....

I hope you enjoy this list as much as I do! Again, welcome!

*~ Kami ~*

[ ] I would love to email someone with RA at my age 38.

I have been diagnosed with RA 3 months ago. The medication I feel is

not working, and now I have more sites that have started to hurt. I

have 2 children and work a 40 hour week as a radiation therapist.

The job I have is very physical and this past week has been so hard on

me. I have bought shoes that were $160 a pair and it helps some, and

sometimes my feet are so swollen and are very painful it is hard to put

any shoes on and to even walk barefooted.

Does anyone have any suggestions about getting going in the mornings?

I have to be at work at 8am and it is so hard. But the weird thing is

by about noon I walk fine with very little limping. Now, this past

week has been horrible.

Please any insight, advice I will greatly appreciate.

thank you

[Guest guest]

Starting Early helps, but sooner or later the Fatigue is going to set in. I

would get up 3 hours ahead of my shift starting and it would still take me half

the day to be able to move half way decent. By the end of the day fatigue. Tired

out, physically and mentally. Plus to boot I had a boss that did not allow

managers to have breaks, needless to say after two months I had to quit. Now I

am doing work that I can work at my own pace not the demands of the company.

Jean

From: nana2livi <s.p5315@...>

Subject: [ ] Re: I would love to email someone with RA at my age 38.

Date: Sunday, September 14, 2008, 8:11 AM

,

I am so sorry to hear about your diagnosis. I hope that you have

started taking something for your RA. The meds do help a lot with

the inflammation. Mornings are the worse! I get up 4 hours before I

have to be at work because it takes so long for me to get myself

moving, ready and drive an hour and 15 mins.

My heart truly reaches out to you. I wouldn't have the energy to

handle kids and myself. I have other health issues that add to the

fatigue. I just started a supplement and Enbrel, they are both

suppose to help greatly.

If your fatigue dosen't get better, please let your rheummy know.

There may be a drug change needed. Take care of yourself too. I know

your hands are full with kids and a job.

God Bless,

Shirley

--- In @gro ups.com, " katiedidnfam " <katiedidnfam@ ...>

wrote:

>

> I have been diagnosed with RA 3 months ago. The medication I feel

is

> not working, and now I have more sites that have started to hurt.

I

> have 2 children and work a 40 hour week as a radiation therapist.

> The job I have is very physical and this past week has been so

hard on

> me. I have bought shoes that were $160 a pair and it helps some,

and

> sometimes my feet are so swollen and are very painful it is hard

to put

> any shoes on and to even walk barefooted.

> Does anyone have any suggestions about getting going in the

mornings?

> I have to be at work at 8am and it is so hard. But the weird

thing is

> by about noon I walk fine with very little limping. Now, this

past

> week has been horrible.

> Please any insight, advice I will greatly appreciate.

> thank you

>

[Guest guest]

Thank you so much Kami.

I went to the doctor today and he increased my prednisone, doubled my

methotrexate and wants me to  start Humira.  I actually had a choice and picked

humira b/c of the injection only very 2 weeks.  I hope that Ihave made the right

choice.  Now, I am on the approval of the insurance and stuff.  We'll see

Thank you

From: ~ Kami ~ <kamilleon@...>

Subject: Re: [ ] I would love to email someone with RA at my age 38.

Date: Sunday, September 14, 2008, 9:01 PM

Hi !

I am 38 and my journey with RA started on my 38th birthday last November with a

case of scleritis http://en.wikipedia .org/wiki/ Scleritis which eventually led

to the diagnosis of RA. This has been THE WORST year of my life. I thank my

lucky stars I have had this group to lean on the past 10 months. If not for

them, I really am not sure I would be here typing this email.

What medication are you on? One thing that SUCKS about the DMARDS is they take

forever to start working. Trust me... If you REALLY want to see if they are

working, stop taking them. More than likely you would have a very rude awakening

like I did when I had to stop Plaquenil due to Plaquenil toxicity. I SWORE it

wasnt working until about 5 days after I stopped taking it and was WHAM! thrust

back into the vicious pain cycle. I then started methotrexate (20 mg per week or

8 pills) and while it does help, I have recently started Humira and am getting

the most noticeable relief with that.

Patience is key with this disease. If you are anything like me, though, you want

things done yesterday and well.... adjusting to this disease can be tricky at

times.....

I hope you enjoy this list as much as I do! Again, welcome!

*~ Kami ~*

[ ] I would love to email someone with RA at my age 38.

I have been diagnosed with RA 3 months ago. The medication I feel is

not working, and now I have more sites that have started to hurt. I

have 2 children and work a 40 hour week as a radiation therapist.

The job I have is very physical and this past week has been so hard on

me. I have bought shoes that were $160 a pair and it helps some, and

sometimes my feet are so swollen and are very painful it is hard to put

any shoes on and to even walk barefooted.

Does anyone have any suggestions about getting going in the mornings?

I have to be at work at 8am and it is so hard. But the weird thing is

by about noon I walk fine with very little limping. Now, this past

week has been horrible.

Please any insight, advice I will greatly appreciate.

thank you

[Guest guest]

Thank you Jean

From: nana2livi <s.p5315 (DOT) com>

Subject: [ ] Re: I would love to email someone with RA at my age 38.

@gro ups.com

Date: Sunday, September 14, 2008, 8:11 AM

,

I am so sorry to hear about your diagnosis. I hope that you have

started taking something for your RA. The meds do help a lot with

the inflammation. Mornings are the worse! I get up 4 hours before I

have to be at work because it takes so long for me to get myself

moving, ready and drive an hour and 15 mins.

My heart truly reaches out to you. I wouldn't have the energy to

handle kids and myself. I have other health issues that add to the

fatigue. I just started a supplement and Enbrel, they are both

suppose to help greatly.

If your fatigue dosen't get better, please let your rheummy know.

There may be a drug change needed. Take care of yourself too. I know

your hands are full with kids and a job.

God Bless,

Shirley

--- In @gro ups.com, " katiedidnfam " <katiedidnfam@ ...>

wrote:

>

> I have been diagnosed with RA 3 months ago. The medication I feel

is

> not working, and now I have more sites that have started to hurt.

I

> have 2 children and work a 40 hour week as a radiation therapist.

> The job I have is very physical and this past week has been so

hard on

> me. I have bought shoes that were $160 a pair and it helps some,

and

> sometimes my feet are so swollen and are very painful it is hard

to put

> any shoes on and to even walk barefooted.

> Does anyone have any suggestions about getting going in the

mornings?

> I have to be at work at 8am and it is so hard. But the weird

thing is

> by about noon I walk fine with very little limping. Now, this

past

> week has been horrible.

> Please any insight, advice I will greatly appreciate.

> thank you

>

[Guest guest]

Kami,

What were the signs of Plaquenil toxicity?  I have been on it for a year.

 

Thanks,

[ ] I would love to email someone with RA at my age 38.

I have been diagnosed with RA 3 months ago. The medication I feel is

not working, and now I have more sites that have started to hurt. I

have 2 children and work a 40 hour week as a radiation therapist.

The job I have is very physical and this past week has been so hard on

me. I have bought shoes that were $160 a pair and it helps some, and

sometimes my feet are so swollen and are very painful it is hard to put

any shoes on and to even walk barefooted.

Does anyone have any suggestions about getting going in the mornings?

I have to be at work at 8am and it is so hard. But the weird thing is

by about noon I walk fine with very little limping. Now, this past

week has been horrible.

Please any insight, advice I will greatly appreciate.

thank you

[Guest guest]

I developed eye problems that they attributed to " Plaquenil toxicity. " I

was taken off of it immediately. That's why it's very important to have

regular ophthalmic exams if you're taking Plaquenil.

Dorothy

_____

From: [mailto: ] On

Behalf Of Bloomquist

Sent: Monday, September 15, 2008 7:29 PM

Subject: Re: [ ] I would love to email someone with RA at my age

38.

Kami,

What were the signs of Plaquenil toxicity? I have been on it for a year.

Thanks,

Re: [ ] I would love to email someone with RA at my age

38.

Hi !

I am 38 and my journey with RA started on my 38th birthday last November

with a case of scleritis http://en.wikipedia .org/wiki/ Scleritis which

eventually led to the diagnosis of RA. This has been THE WORST year of my

life. I thank my lucky stars I have had this group to lean on the past 10

months. If not for them, I really am not sure I would be here typing this

email.

What medication are you on? One thing that SUCKS about the DMARDS is they

take forever to start working. Trust me... If you REALLY want to see if they

are working, stop taking them. More than likely you would have a very rude

awakening like I did when I had to stop Plaquenil due to Plaquenil toxicity.

I SWORE it wasnt working until about 5 days after I stopped taking it and

was WHAM! thrust back into the vicious pain cycle. I then started

methotrexate (20 mg per week or 8 pills) and while it does help, I have

recently started Humira and am getting the most noticeable relief with that.

,_._,___

[Guest guest]

hi jean, i'm 38yrs.old & have been living w/ra for 33yrs.now. yes the mornings r

the worse for me,so what i do sometimes if not in too much pain is take a hott

bath. it so helps me.. i don't work like u but the fatigue is still there both

physically & mentally. i'm happy that u got a job where u can work at your own

pace..

i'm married to a wonderful man & have an awesome 11 yr.old daughter who's very

helpful. i've been through soo much in my life so if u want to chat, i'm here

for u. god bless,melyndagamez 9/16/08 1:15a.m.cdt

[ ] Re: I would love to email someone with RA at my age 38.

Date: Sunday, September 14, 2008, 8:11 AM

,

I am so sorry to hear about your diagnosis. I hope that you have

started taking something for your RA. The meds do help a lot with

the inflammation. Mornings are the worse! I get up 4 hours before I

have to be at work because it takes so long for me to get myself

moving, ready and drive an hour and 15 mins.

My heart truly reaches out to you. I wouldn't have the energy to

handle kids and myself. I have other health issues that add to the

fatigue. I just started a supplement and Enbrel, they are both

suppose to help greatly.

If your fatigue dosen't get better, please let your rheummy know.

There may be a drug change needed. Take care of yourself too. I know

your hands are full with kids and a job.

God Bless,

Shirley

--- In @gro ups.com, " katiedidnfam " <katiedidnfam@ ...>

wrote:

>

> I have been diagnosed with RA 3 months ago. The medication I feel

is

> not working, and now I have more sites that have started to hurt.

I

> have 2 children and work a 40 hour week as a radiation therapist.

> The job I have is very physical and this past week has been so

hard on

> me. I have bought shoes that were $160 a pair and it helps some,

and

> sometimes my feet are so swollen and are very painful it is hard

to put

> any shoes on and to even walk barefooted.

> Does anyone have any suggestions about getting going in the

mornings?

> I have to be at work at 8am and it is so hard. But the weird

thing is

> by about noon I walk fine with very little limping. Now, this

past

> week has been horrible.

> Please any insight, advice I will greatly appreciate.

> thank you

>

     

[Guest guest]

and group;

MY keyboard is starting to stick. I just spillled a diet coke on

it. I chose Humira too cause it was every 2 weeks. It worked

for me in 24 hours. ONe lady said it worked for her in 6 hours.

The next morning I could get out of bed with great ease and that

night the RA pain dis aapeared.

If you guys don't hear from me for a while its cause My husband is

cleaning the key board one key at a time. He has to pop each key out

and clean the soda out. Oh my I did this about 7 monthes ago. He

cleaned each key out and said don't put the soda anywhere near the

keyboard.

gentle hugs

Clora

>

> Thank you so much Kami.

> I went to the doctor today and he increased my prednisone, doubled

my methotrexate and wants me to  start Humira.  I actually had a

choice and picked humira b/c of the injection only very 2 weeks.  I

hope that Ihave made the right choice.  Now, I am on the approval of

the insurance and stuff.  We'll see

> Thank you