Working and PA

[Guest guest]

I feel as you do Caroline.  Seems like each day gets harder and

harder.  I literally have to take a pain pill when I get in and decompress for a

half hour before my husband can even talk to me.  My job is really stressful and

in very stressful moments I slide right into an anxiety attack.  I am on

methotrexate (MTX) as well.  In fact I have decided I really hate the way it

makes me feel.  I honestly do not want to take it anymore.  I don't know what I

would be like if i did not take it though.  How bad would the PA get?

I also have fibromyalgia.  That coupled with PA and a job makes me want to leap

off the nearest building some nights, lol but I other than pain, I love my life

and family way too much.

 

Luv,

 

[Guest guest]

Hi Caroline,

I'm having some of the same problems! I actually tried to quit my job the other

day but the boss talked me out of it. I'm on MTX and Indocin and I'm in so much

pain by the end of the day, lately, the last two weeks I've been so fatigued

that I almost can't make it through the day, I'm popping B-Complex, Emergen-C

and caffeine to keep me going. It's a relief to hear other people out there

going through the same thing. Though of course I wouldn't wish this on anyone,

lol. Today was just awful, I almost couldn't make it through the day and I was

in a fog besides being so tired and I work in a pharmacy so thats not good. I

do think if things don't change, that I will need to quit. I don't have any

good ideas, sorry Caroline, I'm sort of out of ideas myself! If you figure

something out, let me know.

<<I would like to know how you all cope with pain and flare ups and maintaining

your job performance.>>

[Guest guest]

I struggle with that too.  I have been reluctant to tell my boss about the PA

because I don't want to put even a glimmer of an idea in her head that I can't

do my job effectively.  On a personal level I know she will understand but at

the end of the day she's my boss and everyone is replaceable. 

I do a few things to cope at work.  I work in an environment where I can keep

ice and I take stretch breaks frequently.  I also lump my pain meds into the

time I am at work.  I find that if I keep the meds steady when I am at work it

helps the pain a lot.  Right now I am taking an anti-inflammatory on top of the

MTX, I take that in the morning so I get the full benefit during the day.  I

also keep pain gel in my desk.  Between ice, stretching, med spacing, and deep

heat rub I can usually limp along.  When I get home I order in and tell my

family that I am accepting visitors on the couch.  They understand that it's not

forever it's just a flare up.  But I have a son who is 8 and a self-sufficient

husband, that makes it a lot easier.  I hope I have helped.

J-

 

P Please don't print this e-mail unless you really need to

Be kinder than necessary because everyone you meet is fighting some kind of

battle.

[Guest guest]

I have extreme progressive PsA and I had to quit working in October 2008.  I am

already walking with the assistance of a walker only and I can't even drive my

car anymore.  I have to take a shower the day before any appointments because I

am so wiped out after just a shower, I am unable to do much more.  I have tried

Enbrel, Humira, methotrexate and Remicade with not much change.  My doctor has

changed my Remicade from 400mg infusion to 800mg infusion recently to see if

that helps any.  I was only diagnosed in June 2008 and my disease is moving

quickly.  I would love to be able to go back to work - I absolutely loved my job

and I miss it everyday.  So try to keep your job as long as you possibly can

because you won't realize how bad you miss it until you don't have it anymore. 

Hang in there and keep on praying.

Sherry

[Guest guest]

Caroline and all,

I have extreme fatigue as well, making it difficult to work and have a life

beyond work. The FMLA act as well as the Americans with Disabilities Act has

helped me. Under the ADA I asked for the accommodation of a flexible start time

and the ability to telecommute some days. (I'm a tech writer so telecommuting is

possible for me.) I find when I have a limited supply of energy for the day that

it makes sense to put that energy into working from home and have a little bit

left afterward, rather than getting ready for work, driving in and back from the

office.

I know telecommuting isn't possible with all jobs, but there may be another

accommodation that can help you.

Dee

[Guest guest]

" cbreese12002 " wrote:

<<I would like to know how you all cope with pain and flare ups and maintaining

your job performance.>>

I have to say that methotrexate is/was my miracle drug. When Enbrel was added

on later, that only made it even better. Before being diagnosed with PA and

starting Methotrexate, I was on short-term medical disability and able to walk

short distances only with the aid of two canes. After the methotrexate kicked

in, I was able to return to work full time, although I did have to change from

the more physically demanding hospital nursing position I had previously held to

a less strenuous job in an outpatient clinic. It's been 8 years since diagnosis.

I did have a hip replacement three years ago, and was off work 28 days for that,

then returned full-time. My un-operated hip is beginning to degenerate, so I

expect I will be needing a second hip replacement in the near future (maybe a

year or two from now), but I expect once that's taken care off that I will

return to full-time status once again.

I make sure I take my Naproxen at breakfast and lunch time, and that carries me

through the work day pain-wise. At night, I may take 1 or 2 Ultracet if I'm

experiencing a lot of pain, but that's not common for me to have to do so.....my

last prescription had 30 pills in it, and that lasted me a whole year. If my

sciatica is particularly troublesome, I also use Lidocaine patches, which

help....again, that's not something I have to do frequently.

I am lucky in that my children are all grown and independent....if I had young

children to run after in addition to working, it might be a different story! My

husband is disabled due to seizures and encephalopathy, but he IS ambulatory, so

unless he's actively seizing he doesn't require much physical care....it's a

matter of monitoring his medications and maintaining his safety. My 96 year old

father-in-law who lives with us is also still ambulatory, and requires little

physical care.....again, it's a matter of monitoring medications and maintaining

his safety.

I will say, however, that surgeons and other doctors have told me in the past

that I seem to have an extremely high pain tolerance, which in combination with

the medications, may be why I am still managing full-time work.

Drei

[Guest guest]

Thanks to all of you that have responded. It's really good to have the

understanding and support that only you all provide. I go to my physician

tomorrow, and will bring all this up.

I'm finding this condition really difficult and frustrating because I used to be

a very active person, and now I frequently only see the inside of my bedroom and

use up all my energy on nursing school (which I started before I developed PA).

I'm just not ready to give up after all the hard work to get there. Do I have

unrealistic expectations with continuing with school, work, and having enough

for the people and things I enjoy?

Because I'm in clinicals in hospitals and frequently work with people at risk or

have tuberculosis, I cannot take Enbrel or Humira to add to my risk of

infection. Nor, can I be hopped up on painkillers, (though, sometimes I wish I

could). What else works?

Caroline

[Guest guest]

Caroline:  I think you should not give up your dreams but you might have to make

some adjustments.  For instance, I'm sure you love working directly with

patients but you might eventually have to think about choosing a particular area

of nursing where you can limit your exposure - perhaps working only in a ward

like oncology or in OB/GYN, where the risk would likely not be greater than just

walking on the street!   (TB is not the only thing you have to worry about: 

virtually any infection has the potential to become life-threatening, though few

do if they are caught early and treated properly.)  I have a friend who's an RN

and handles a service offered by her local hospital where patients can call and

get advice by phone about what to do for particular conditions that might not

require a doctor's visit - or if it's more serious, they're told to visit a

doctor.  She actually enjoyed that, too.  There are some on this list-serve who

are

nurses:  I'm sure they may have some real words of wisdom for you. 

I think it very likely that - if you want to live a relatively pain-free

existence - you will ultimately need to take one of the TNF blockers.  Pain meds

- even if you took a lot of them - do not stop the progression of the disease,

only mask its symptoms while the joint damage worsens.  Hopefully, you will find

a way to hold off until the part of your training is complete that brings you

into daily contact with all those bugs!     

 Joanna Hoelscher

[Guest guest]

Hi Caroline,

YES, your life can continue as normal with treatment. It may take some trial &

error to get you the correct treatment, but it can work.

I understand your concern about taking drugs that suppress your immune system,

Unfortunately, I believe that any drug that successfully treats your PA WILL be

an Immunosupressant, as PA is a disease that causes your immune system to go

into overdrive.

I can't say that you need not worry about clinical contact with people who have

TB, but I can say I have been on MTX (also an immunosupressant DMARD) for over 6

years and I've not had any cause for concern. I rarely get sick with a cold,

have never had the flu.

Also I would hope that working in a hospital/clinical environment that you and

others are taking EVERY precaution with contagious diseases. That means wearing

gloves, washing hands and wearing masks when indicated. If you are taking all

of these and other measures, I would believe that you are at no greater risk

than any other normal health care worker. While I do not work in healthcare, I

do meet hundreds of people in the course of a week and I've not been adversely

affected.

Check with your doctor.

Stay Well,

[Guest guest]

I don't know that this is true for everyone. Several years after my

arthritis worsened my life is no where normal. There doesn't appear to be a

right treatment for me. I think it is probably true for a lot of people but

there do seem to be a portion of people who don't respond to what is

currently available for treatment.

Gareeth

wrote:

<<YES, your life can continue as normal with treatment. It may take

some trial & error to get you the correct treatment, but it can work.>>

[Guest guest]

I have only been diagnosed for about a year, but realize I have had this for a

long time. My life is nowhere close to where it used to be, but.... it is

improving! I think the important thing to remember is that this is not a quick

fix problem. It is a journey with an unknown destination. You can either focus

on the pitfalls and problems or take on the challenges and try to enjoy some

parts of the journey. I can relate with the fear, but if you're not careful it

can be paralyzing and make you feel much worse.

My disease was in advanced stages where I couldn't even get out of bed before I

was smart enough to realize that I wasn't just lazy. 18 months ago I could

dance with my grandkids. Now, I usually walk with a cane and have to plan every

part of my day. But I have improved and I am learning to cope. I am fortunate

enough to have a very supportive family.

My advice is find as much support as you can. If someone hasn't given it to

you, Google the spoon theory, and as my Dr. has told me, don't fight this

disease, it will win. Learn to conquer it through attitudes, support,

treatment, pain management, etc. I am discovering that there is life after this

disease - It is just different. Find your new normal.

" agapesue " <agapesue@...>

[Guest guest]

I am in a similar predicament. I was diagnosed in my 2nd semester of nursing

school. It has been very hard w/ the fatigue and pain. I am on MTX and

painkillers at times but I struggle w/ the same things you do. I don't think I

could handle working on like a med-surgical floor. I did it for clinicals this

past semester and it was very tough on me. I have 1 more semester to go but

constantly wonder what I will actually be able to do realistically job-wise,

along w/ raising my 3 yr old and trying to have a decent life. I too was very

active and still exercise but not nearly like I used to. If I do too much my

body lets me know. I feel so weak these days. It is extremely frustrating. I

have definitely had to choose what are my priorities each day- and had to give

up things- usually it is social activities b/c everything else is necessary. I

figure I will only be able to work part-time and do something like oncology

(where everyone is immuno-compromised!) or clinic work. I wish I could offer

more to you but this is my reality too. Please let me know how you do.

Sincerely,

in MN

[Guest guest]

Gareeth, I seem to be on the same path that you are. For me, the only way to

get any kind of normalcy was to quit working. I pushed myself for quite awhile

but if you push too hard this disease seems to push back, at least mine did. I

wish all of you the best, we are all different, I hope you can find treatment

that works for you.

Deanna

[Guest guest]

I am a nurse and work in home health. I was concerned about being around so many

germs, infections, etc, but I've been on Enbrel and methotrexate for about 2

years and so far, with thanks to God, I've been pretty healthy. I work full

time. I would say, continue to work, being very careful with hand washing, etc,

and try not to think about what you might " catch " . It is difficult to work but

more difficult if you have that thought in the back of your mind. It seems that

with each new job I had prior to the PA, that for a few months to a year or more

I would have a lot of colds and minor problems but after working that particular

job for a while, I would just kinda become immune to some of the germs. Not

sure if this helps but I am older and have been around about any kind of germ or

disease you can imagine. I think God looks after those who look after others.

That is just my thought. And, if I should get sick today, I still think God has

looked after me and been very good to me. I have Him to thank that I've been

able to continue working. I am old enough to retire but plan to work as long as

I can physically maintain my work standards. Sherry hh>

[Guest guest]

This for me says it all. " Find your new normal. " I don't believe I have read

anything more apt than those 4 words.

I was diagnosed with PA in March and my " normal " world is nothing like it used

to be. I'm taking your advice and I'm going to embark on my journey to find my

new normal.

I've been lurking and reading for awhile but your post really made me want to

become a more active part of this wonderful online community. THANK YOU!

Jess

<<I am discovering that there is life after this disease - It is just different.

Find your new normal.>>

[Guest guest]

I got " out-sourced " at work, and didn't look for work after that. It was a

blessing in disguise for me...fatigue was a huge issue when I was working. It

was a desk job so the pain didn't really keep me from working but the fatigue

was killing me. I would work for 8 hrs then come home and fall on my face and

sleep til the next morning then go back to work. I didn't have any life other

than that (sucky) job. I am just fortunate that we are able to squeak by

without my income.

" Michele " <spottie@...>

[Guest guest]

Sherry,

I think it's wonderful that you have been able to continue working even past

retirement age! Nursing is a very demanding job and I applaud you!

If I sound like I'm pushing for people to QUIT working I would also hope

everyone can forgive me. I try to add the other side of the coin here because I

wish someone could have convinced me that it was OKAY to quit working sooner. I

struggled and still do somewhat, with the notion that I left a good job. I was

not able to keep up with my duties. As a single parent I had to keep pushing

myself for many,many years. In the long run I think I damaged myself towards

the end. I was being stubborn and was just gonna claw my way through no matter

what because that is what I had always done and was taught to do. Believe it or

not, it was my teenage daughter who finally preached and begged and cajoled

until I looked into my options. I just want to let people know that it's okay

to do what you need to do for yourself.

Love to you all,

Deanna

[Guest guest]

-Hi Deanna,

I agree, being a martyr in this case just doesn't pay.

Didn't want to leave work either, I just could not do my job any more. My

friends helped me but that wasn't fair to them.

A lot of pressure is gone now and I can concentrate on taking care of myself and

not feeling guilty for having to take time off work.

Most people will know when enough is enough and its time to stop trying to fight

the pain.

I don't feel any shame in admitting I just can't do it anymore.

Take care.

SD

[Guest guest]

Thank you, and yes, I think some people absolutely need to quit but for those of

us who can manage to continue, then I think that is also good. I worked today

and was wiped out at the end of the day but hopefully I will recoup' tonight. I

probably should slow down but don't seem to be able to. Good health to all of

you! sherry hh

[Guest guest]

I always felt a lot of pressure to keep working from family, friends, and

society in general. I would see articles in the media about people with

disabilities/challenges that achieve great things. I felt pressure from those

articles thinking to myself that who am I to sit back and be " lazy " when there

are others like these people in these articles that are far more challenged than

I am. Doctors suggested SSDI, ignored it for years, then applied and received

it. Ticket to Work program paid for my retraining. Worked for three years

after completing college. I worked myself until I was very ill. I will never

completely recover. I so regret not going with my gut, if I had I would have

stopped working years ago, would have had better health and a better quality of

life. Everyone is different and I always suggest to people to " go with your

gut. " It is always right.

-Eileen

[Guest guest]

There are a number of people using biologics in combination with the MTX now. I

started on Enbrel but even on high doses it was not nearly as effective as the

Remicade is now. Unfortunately, I have too many other things going on to work,

but the Remicade has definitely helped.

Cheryl (AK)

[Guest guest]

,

It's so good to hear from someone who knows exactly what I'm dealing with!

Thanks for responding!

Caroline