Work

[Guest guest]

Heidi, I'm sorry you're in pain and so sad.  Have you spoken with your HR

people?  I believe RA is covered under ADA and it's reasonable for them to make

accomodations like giving you a rolling stool and time off for dr's appts and

sick days(under FMLA?).  The civilian world confuses me, but I know they have to

work with you somehow.  When is the Orencia supposed to kick in?  Feel better,

be kind to yourself, Kate F

________________________________

From: heidi martinelli <giambifan2001@...>

Sent: Wednesday, July 1, 2009 8:45:39 AM

Subject: [ ] work

I work pt but am always looking for ft positions.It is hard, I sometimes think I

am deluting myself.Yesterday I had my 2nd Orencia and this morning woke up and

found I cant bend my middle finger and it looks like a susage and I am in so

much pain.But thank God I took yesterday and today off or I would have had to

call in today.I am a Phlebotomist and am always using my hands and on my feet.I

seriously need to look for a different position, I have been a Phlebotomist for

10 years and it is wearing on my hands too much and I am calling out too

muich.Is there anyone to stand up for us so we dont get fired due to our

illness???I dont know what Im going to do financially if I do get fired.I have

dreams about going back to school, but I really need to face reality and tell

myself that is not going to happen.It makes me sad to know that I wanted to wait

till my daughter turned 18 so it was my time to go back and better myself and

now I cant.Also, I am in no way

a drug addict, but I certainly can see how it happens to people that are in sooo

much pain.And lastly, working in the healthcare field, it is depressing to see

patients come in that have had  the disease  for years and they are  deformed

and I always say to myself that  that is my future.Sorry guys for being so

depressing, but I woke up absolutely miserable.Hope you all have a better day

and thank you for letting me vent.

Heidi in PA

[Guest guest]

Heidi, I'm so sorry. Could you talk about your situation with your

rheumatologist? I would tell him/her everything you told us here.

Not an MD

On Wed, Jul 1, 2009 at 8:45 AM, heidi martinelli<giambifan2001@...> wrote:

> I work pt but am always looking for ft positions.It is hard, I sometimes think

I am deluting myself.Yesterday I had my 2nd Orencia and this morning woke up and

found I cant bend my middle finger and it looks like a susage and I am in so

much pain.But thank God I took yesterday and today off or I would have had to

call in today.I am a Phlebotomist and am always using my hands and on my feet.I

seriously need to look for a different position, I have been a Phlebotomist for

10 years and it is wearing on my hands too much and I am calling out too

muich.Is there anyone to stand up for us so we dont get fired due to our

illness???I dont know what Im going to do financially if I do get fired.I have

dreams about going back to school, but I really need to face reality and tell

myself that is not going to happen.It makes me sad to know that I wanted to wait

till my daughter turned 18 so it was my time to go back and better myself and

now I cant.Also, I am in no way

>  a drug addict, but I certainly can see how it happens to people that are in

sooo much pain.And lastly, working in the healthcare field, it is depressing to

see patients come in that have had  the disease  for years and they are 

deformed and I always say to myself that  that is my future.Sorry guys for being

so depressing, but I woke up absolutely miserable.Hope you all have a better day

and thank you for letting me vent.

> Heidi in PA

[Guest guest]

Hi Heidi - I'm sorry you are in so much pain. I pray the Orencia will be the key

to remission for your RA. I know how frustrating this all is. Have you ever

thought about checking into Vocational Rehab in your area? They could help to

either retrain you for a job that you could do or help to find ways to modify

the job you're doing now so you are not so uncomfortable. I wish I could go back

to work. I hate being financially strapped and having no health insurance. I

hate being at the mercy of others. I wish I had my independence back. But, I

take one day at at time, try to get creative and find new ways to do the things

I can no longer do.

Please don't apologize for venting how you're feeling. We're all in the same

boat and I completely understand. Praying for better days ahead.....Doreen

I work pt but am always looking for ft positions.It is hard, I sometimes think

I am deluting myself.Yesterday I had my 2nd Orencia and this morning woke up and

found I cant bend my middle finger and it looks like a susage and I am in so

much pain.But thank God I took yesterday and today off or I would have had to

call in today.I am a Phlebotomist and am always using my hands and on my feet.I

seriously need to look for a different position, I have been a Phlebotomist for

10 years and it is wearing on my hands too much and I am calling out too

muich.Is there anyone to stand up for us so we dont get fired due to our

illness???I dont know what Im going to do financially if I do get fired.I have

dreams about going back to school, but I really need to face reality and tell

myself that is not going to happen.It makes me sad to know that I wanted to wait

till my daughter turned 18 so it was my time to go back and better myself and

now I cant.Also, I am in no way a drug addict, but I certainly can see how it

happens to people that are in sooo much pain.And lastly, working in the

healthcare field, it is depressing to see patients come in that have had  the

disease  for years and they are  deformed and I always say to myself that  that

is my future.Sorry guys for being so depressing, but I woke up absolutely

miserable.Hope you all have a better day and thank you for letting me vent.

Heidi in PA

[Guest guest]

I am a 44 year old female diagnosed 6 years ago. Things were good but getting

worse now. Pain is getting to the point it hurts to walk if I over do it. All

the neuro doc's say they don't think it would be bad for me,, but that was about

5 years ago. I don't want to take pain meds, but working is getting too much.

What can the doctors do beside give me meds. I don't want another Nerve

conduction test. Ouch!! Should I be thinking of applying for SSI? Even know that

is so very hard??

Any suggestions?

Thanks,

ann

[Guest guest]

Hi Gretchen,

Thanks for your reply. I have a office position but I do alot of walking as I am

in inventory control for a parts dept of CAT. I really can not afford to cut my

hours so I would think its all or nothing. I am debating to make a appointment

with Dr Scherer of the Un. of PA or Dr Tahmoush in St Francis. Dr Scherer is at

a teaching hospital and I felt I was more of a specimen than a patient but he

seemed more knowledgeable. Do you have any suggestions? Oh and my insurance wont

cover massage therapy. Although that has helped in the past.

Thanks,

ann

[Guest guest]

anne,

Ok got it. First I would suggest you work with your office of Human Relations,

explain your needs about all the walking, ask if there is some way your job can

be accomodating - someone else to do the walking or other ways of making

accommodations for you. Perhaps supplying you with a scooter to use at work

would be an idea.

If you can't afford to work less hours, be aware that under SSDI you will

receive never receive an equivalent benefit amount to your current salary, and

health insurance takes 2 years after benefits start, to begin.

Gretchen

[Guest guest]

Hi ann!

I'm 33 with CMT1A. I'm in the process of getting AFO (ankle foot orthotics) as

a strategy to cope with late day fatigue. My stamina has been decreasing

(hmmmm...could it be our 4 year old son wearing Mommy down...? *wink*) and the

docs think the AFOs could combat this.

I wonder if AFOs might warrant investigation for your issues as well. (Assuming

you do not already have them)

Cheers;

Nic