Re: Things aren't looking so good

[Guest guest]

Missie, hang in there. You have to believe that things will get better. Flares

also make most of us depressed. I know when I flare I think I'll never get

better. My voice is flat and I feel hopeless. Then I'm well and back to being a

bumblebee. Sure you have health challenges but you are the only wife and mother

your family has. It's terrible for kids to lose a parent to suicide. I urge you

to continue to carry on for them. Please keep the national crisis number

800-273-TALK on your fridge. Also please tell your doc that you are despairing

from the pain. Doing a dose pack of pred might increase your optimism and

comfort. Kate F

Sent from my iPhone

On Nov 29, 2010, at 8:10 PM, " missieph " <missieph@...> wrote:

> So after my Rheumy moved me to 300mg of Remicade, and upped me to 8 pills of

methotrexate, and gave me naproxin. I am getting worse every day. It's to the

point where I literally wanted to end my life over the weekend. Between the

massive amount of pain I'm in, and how I feel like a bad wife and mother (they

deserve better). I decided to get help instead. I know once the pain is gone, I

can enjoy life. I'll give it one more shot. I'm trying to get in to a pain

management clinic and a psychologist. I have another appt. w/ my rheumy in 3

weeks (instead of the normal 8 weeks) to do remicade. If this doesn't work,

he'll try something else.

> I am on short term disability. I literally laid in bed all day today in pain.

I " m scared, because in another 6 weeks, my disability only pays me 65% of my

salary. I am already not getting my bonus.

> With a ton of money that we had to dump into the house over the past year for

a huge mold problem that the home inspector didn't find, we had to add a new

roof and siding, we are in debt. When we bough the house, we could afford it if

one of us lost our jobs. Now with the debt from that, and the car I bought in

June, and me not getting my bonus...and who knows when I'm going back to

work...I'm scared we are going to lose everything.

> At this point, I can't even think of little jobs I can do around the house to

make money. We are so screwed.

> I thought maybe I could make cookies or cupcakes or something, but considering

I was going to bake cookies for my kids today, and that never happened. I guess

that's out of the option.

> Any ideas?

> Thanks!

> Missie in PA

>

>

[Guest guest]

The predisone dose packs have gotten me through some tough times.  I have had

better luck with the methopredisone than the regular but that may be just me.

 

Best of luck to you

 

Pau

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[Guest guest]

Ideas.Have you tried to exercise any;if you can?,but first confront your

physician before doing so,it seem's to help me tremendously, while your not

having a Flair up.The drug's

might be an option for you i can't say.Have you thought about moving to a

smaller home

and paying cash for a cheaper vehicle,their are many option's and most of

all:PRAY alway's.Good luck..

[Guest guest]

After being on Prednisone, it started to have a negative effect on my body. He

gave me a bulk IV dose a couple of weeks ago w/ my remicade, and I felt a little

better, but I don't like what it does to me. I've had this flare since March...

Missie

[Guest guest]

Over the summer when I could, I would walk a couple of miles in the parking lot

during my lunch break. That stopped as I got worse. The past few days, I've just

been laying in bed. I only get out if I have to.

Since the repairs on our house, we still have to paint the rooms that were

re-done from the mold. Also, when we moved in, the fridge died, and so we

replaced it with a larger one (the kitchens and fridges were small), and then we

had the mold problem, so the kitchen was never finished, and we have no $ to

replace it. So, though we've thought about moving to a smaller house, this one

isn't ready to be sold .

Thanks for the ideas

Missie

--- In , robert tennent <thetennentcompany2@...>

wrote:

>

> Ideas.Have you tried to exercise any;if you can?,but first confront your

physician before doing so,it seem's to help me tremendously, while your not

having a Flair up.The drug's

> might be an option for you i can't say.Have you thought about moving to a

smaller home

> and paying cash for a cheaper vehicle,their are many option's and most of

all:PRAY alway's.Good luck..

>

[Guest guest]

Dear Missie-  I honestly know how you feel about the quality of life issue. I

too wanted to end my life many times over when I broke my back and had to stare

at a ceiling for 2 weeks shy of a year. They thought I'd not walk again ( I

foozled 'em ). That was in '97. Then Fibro and OA set in and made my life hell.

Then I was diagnosed Diabetic and hypertension was a real issue. Then my heart

started acting up. Then I had a hysterectomy because I had abnormal cells that

were going cancerous. Asma. Then finally,  the RA now in this past year. But

you know what? We really never know what is around the corner, and it is

generally worth everything we had to take and put up with to get there.

 

Now I have my long dreamed of farm and my menagerie of critters. It will take

longer to get it to the way I want to because of the health issues- but get

there it WILL!  This d**n disease will NOT take my life away from me. I made

the decision to fight and keep fighting and doing what it takes to live and not

just exist.

 

I know how hard it can be. I know how it feels to live as a burden to others and

not much good to anybody. But the truth is that those we call family and friends

are in our lives for a reason.  We don't always know the " why " things happen as

they do. I am not religious. But I believe that there is a God of some fashion

and I know that I am not " It " . I have to trust that the world will turn and that

life will unfold. I just have to remember to hang on with all I have and let it

happen. Hang on long enough and the scenery will change.

 

For me, it was so hard to believe that things would change enough that it would

make life worthwhile again.  But it DOES happen and it WILL happen for you too.

I had to stop being so angry about what I could no longer do. Me, the type " A "

personality, the control freak, the manager. Well, I can tell you that anger and

resentment just eats a hole in your soul and has no good use except to fight the

disease with. It is my enemy, but I respect it. I choose to know my enemy

intimately and learn all I can about it- the better to fight with!

 

Hang on honey, with all you got. Life WILL unfold, and the scenery will change.

Don't limit yourself to " One more shot " . It'll take all the ammo you can muster.

Don't quit. Not ever. Because you just never know what is around the corner. The

scenery will change. You will change. You can find a way to make this new way of

living worth the living.

 

This group helps me to learn ( God Bless you ) and I see the echo of what I

feel and have felt and know that it will change. Breathe in, breathe out, fight.

There are folks on this list much wiser than I that have lived with this disease

for 20-45 years. It can be done. Knowing that makes me stronger. Besides, what

in the world makes you think that your family would be better off without you?

It would be a huge burden on them. If your kids are under 50 or so- they still

need you. Your spouse still needs you. You are stronger than you know. I promise

you that.

 

As to what to do about your finances, perhaps you can refinance your mortgage- I

don't know your situation. If your Docs feel that you will have to go on

Disabilty for at least a year- then apply right away and start the process. You

can go back to work when you can. Do what things you can to save bucks and hang

on. Get State help if you can. Food stamps or whatever else you can- for now so

that you can pay the bills.

 

My mantra is- " I will fight and win by living the best I can with what I have " .

 

Hope that it becomes yours too.

 

in SC

So after my Rheumy moved me to 300mg of Remicade, and upped me to 8 pills of

methotrexate, and gave me naproxin. I am getting worse every day. It's to the

point where I literally wanted to end my life over the weekend. Between the

massive amount of pain I'm in, and how I feel like a bad wife and mother (they

deserve better). I decided to get help instead. I know once the pain is gone, I

can enjoy life. I'll give it one more shot. I'm trying to get in to a pain

management clinic and a psychologist. I have another appt. w/ my rheumy in 3

weeks (instead of the normal 8 weeks) to do remicade. If this doesn't work,

he'll try something else.

I am on short term disability. I literally laid in bed all day today in pain.

I " m scared, because in another 6 weeks, my disability only pays me 65% of my

salary. I am already not getting my bonus.

With a ton of money that we had to dump into the house over the past year for a

huge mold problem that the home inspector didn't find, we had to add a new roof

and siding, we are in debt. When we bough the house, we could afford it if one

of us lost our jobs. Now with the debt from that, and the car I bought in June,

and me not getting my bonus...and who knows when I'm going back to work...I'm

scared we are going to lose everything.

At this point, I can't even think of little jobs I can do around the house to

make money. We are so screwed.

I thought maybe I could make cookies or cupcakes or something, but considering I

was going to bake cookies for my kids today, and that never happened. I guess

that's out of the option.

Any ideas?

Thanks!

Missie in PA

[Guest guest]

Thanks, *hugs*

Missie-PA