Re: Re: Beth/Just diagnosed

[Guest guest]

Hey, , Glad to hear from you. I started my methotrexate last night. I woke

up this morning with a bad headache. It's 6:30 pm right now in GA and I'm a

little sick at my stomach.

I talked to the people at work and she told me to talk to my docs seriously

about if I need to stand so long on my joints at work, anywhere from 8 to 14

hours. I'm doubting I can handle it, but I need to see what my doctors say. I

think I need to try for disability but I've heard I have to get me doctors to

try and help me.

Are you on disabiliy? Was it hard to get it? Right now I feel like crap but I

hate to complain because nobody understands how I feel.

Hope to hear from you soon. Beth

[Editor's Note: Beth, could you do your job if you had a high chair or

something similar to sit on? Kathy F.]

karencorie66 <ladyspeed@...> wrote:

Hi Beth,

Welcome to the group. I'm sorry to see you share the same diagnosis.

But glad you found the group. I know it has been the help I was

looking for.

I can't really help you on the employment thing since I haven't been

employed over 7 years due to this. I am not able to stay focused due

to the pain and brain fog. I find at times I can't even spell the

easiest of words.And my fatigue levels are soaring high.

I hope you can receive some answers from the other members here. I was

offically diagnosed with this disease about a week ago even though I

was diagnosed with an inflammatory arthritis that was like RA at age

12, and I just joined the group myself.

I hope you can achieve a controlled state with your disease quickly.

Hugs,

Corie

[Guest guest]

karencorie66 <ladyspeed@...> wrote: Hi Beth,

Welcome to the group. I'm sorry to see you share the same diagnosis.

But glad you found the group. I know it has been the help I was

looking for.

I can't really help you on the employment thing since I haven't been

employed over 7 years due to this. I am not able to stay focused due

to the pain and brain fog. I find at times I can't even spell the

easiest of words.And my fatigue levels are soaring high.

I hope you can receive some answers from the other members here. I was

offically diagnosed with this disease about a week ago even though I

was diagnosed with an inflammatory arthritis that was like RA at age

12, and I just joined the group myself.

I hope you can achieve a controlled state with your disease quickly.

Hugs,

Corie

>

> Hello, I just went to the doctor today after having lesions behind my

> ears and in my scalp. I was wondering why my joints were making me, a

> 37 year old woman feel like I'm 77. I've been having problems for about

> a year now with my joints. OH MY GOSH, HOW PAINFUL! I also have type 2

> diabetes. I thought it was the diabetes giving me fits, until I started

> having problems with my ankles, hips, knees and now one of my fingers

> that I've almost lost the use of. I had surgery on my left knee last

> week to have fluid drained and some of the tissue tested for RA. It

> came back neg. My finger was bothering him so he sent me to a RA doc

> today. He asked all kinds of questions and then the psoriasis thing

> came up and I said yes. He said we finally have our answer for why I

> feel like I have no energy and tired. I some what feel better, but I'm

> worried about how I'm going to be able to do my job. I have a stand up

> job and have to use my hands constantly. I've been out of work for a

> little over a month because of being sick and work has been slow. I'm

> really confused and need some friendly advice. Beth

>

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[Guest guest]

I wish the chair was an option, but the job requires moving constantly. Plus I

have nothing else to go to. I have no qualifications to work in an office or

anything like that. Besides, I've filled out a lot of application for office

jobs and no luck in landing one. They all say they'll call. I call and it

doesn't do any good. Still nothing. I have the best insurance where my husband

works at Mohawk. It's the GOLD plan and it's the best they have, but my bosses

are worried about me but what can you do if you can't perform what they need. I

talked to them and they want me back. I told them that some one will get mad if

I can't pull my weight, but she said they better leave me alone. So, we'll see.

I have an appt with my family doc in the morn and one with my orthoped on Jan

16. Just hang in there with me. Don't give up on me. I really need you guys.

Just reading your posts makes me think about a lot of things. Love Beth

[Editor's Note: Beth, I don't know exactly what you do, but have you considered

purchasing, through insurance or otherwise, an electric scooter or wheelchair?

Many of them come fitted out with large baskets if you need to transport things

like files and such. They fit in extremely narrow spaces. You might be able to

use this on the job and instead of being slower than the others, you could,

potentially, do your job even faster. Another thought is to look around your

area and see where the jobs are. What industries or companies are growing?

What kind of help do they routinely need? You might be able to take a night

course that would train you to do some other kind of work that IS inside an

office (e.g. medical transcription, receptionist, telephone orders, insurance

associate, etc. You might have to take a cut in pay initially if you switch

careers, but it would give you a future and it might provide more pay than

disability. Don't worry. We'll hang in there with you. We won't give up.

Kathy F.]

dreimutter1957 <dreimutter1957@...> wrote: I'm worried about how

I'm going to be able to do my job. I have a

stand up job and have to use my hands constantly.

Beth, you probably need to speak with the management at your job. By

law, your employers must give you REASONABLE accomodation to enable

you to perform your duties. As Kathy said, see if they can give you a

tall chair or something to sit on if that would help. That certainly

falls under the heading of reasonable accomodation. Also, along with

the Methotrexate, physical therapy helps a LOT to maintain flexibility

of joints, hands, and so on. And many of us here use one of the

biologics, like Enbrel or Humira or Remicade along with the

Methotrexate because both together seem to work better than either

alone.

I would say applying for disability should be your last resort; my dh

was one of the lucky ones who got his disability (for a refractory

seizure disorder) on the first try, but most people are denied at

least once and have to resort to hiring a disability lawyer to get

accepted. When you DO get disability, you get only about 3/4 of what

your pay was at the MOST.....it's not a whole heck of a lot of money

to live on. If we had to live on dh's disability income alone, we

would be homeless, to put it bluntly. Plus, after you've been on the

disability for 6 months, then Medicare kicks in, and they deduct

premiums for the Part A and Part B and for the Medicare prescription

plan you choose.....(and most of the Medicare prescription plans are

really awful, with the donut hole gap and limiting the drugs you can

have to what's on their formulary and stuff.)

Another thing you may want to do is make a list of your

accomplishments and see if there is another type of employment you

could do that would be less physically demanding....that's what I did.

I did have to be on medical leave from my job (paid as short-term

disability) for 6-9 months when I was first diagnosed. I worked as an

RN in a teaching hospital, and my PA showed up as psoriatic

spondyloarthritis. It also affected my hip terribly. Before starting

the Methotrexate, I could barely walk.....had to hobble about my house

using two canes.....can't exactly charge up and down the halls taking

care of 28 or so patients in that condition! After about 6-9 months on

the Methotrexate, I was able to walk short distances without any canes

but had a bad limp......I had to leave hospital nursing and switch to

office nursing which is far less physically demanding. Since then,

I've had a hip replacement and started Enbrel and am doing TONS

better. I still wouldn't be able to do hospital nursing, I don't

think, though.....lifting and moving immobilized patients about would

DEFINITELY kill my back. In the office, the patients climb up on the

exam tables themselves.....I don't have to lift them

Wishing you improved health SOON.

Wanda

[Editor's Note: Great post, Wanda. You've provided a number of wonderful

suggestions as well as an inspiring testamonial. Kathy F.]

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[Guest guest]

In a message dated 1/12/2007 8:29:27 A.M. Eastern Standard Time,

remshotpurpleparis@... writes:

my bosses are worried about me but what can you do if you can't perform what

they need. I talked to them and they want me back. I told them that some one

will get mad if I can't pull my weight, but she said they better leave me

alone.

Have you discussed with your HR folks about another position within the

company? Good workers are hard to find and companies do not want to lose them.

See what's available. Explain your concerns about fulfilling your present

duties and also how you feel it may not sit will with co-workers. I've seen

jobs created to accommodate a good worker no longer able to do present duties.

Peace and Hugs,

Sandy swOhio