Re: Needing positive reinforcement in Illinois

[Guest guest]

Then you came to the right place. I think the hardest thing is that other

people don't understand what this disease can do to you. You look fine on the

outside but you hands and feet and every other joint just will not do what it is

supposed to. I feel for you for having young children and cannot do the things

with them that they would like. And men have no clue anyway. I have DDD

(degenerative disc disease)20 years. I have just been diagnosed with RA. All

tests come back tomorrow. I don't know if I am anxious or scared. Just for

you info. DDD and RA are both autoimmune diseases. Many of the gals here have

2, 3 and 4 of these diseases. I never knew about this until I was dx and

started reading. I don't know what's to come but am going to hit head on. I

have no children at home so I don't have anyone to take care of. or vice versa.

SO you keep in touch. We are all here for the same reason. To help.

Judith Ann

So Shy <so_shy234@...> wrote:

I was diagnosed with aggresive RA last July and my life has done a

complete turn around since. I'm not sure what to do with myself any

more. I use to be very active. I went to the gym 6 days a week,

rode bikes with the kids, roller skating, etc. etc. When I was

diagnosed, I was put on methotrexate (15mg) and folic acid. I have

no energy. I have days when I can't use one arm or the other, can't

hold a pen to sign my name to a check, or struggle just to get out

of bed in the morning. I'm 34 yrs old, married with two children 6

& 9. I hate having to tell my kids I can't do this or can't do that

today. I get upset with my husband who has know idea what I'm going

through, and believes I'm making a bigger deal out of it than it

is. I'm in social work and have always been a positive

person....I'm really struggling to find a positive right now. I

guess I'm just looking for some people who understand what I'm going

through. Hoping to find some positive suggestions or ideas on how I

can keep this from limiting me so much. Heck, maybe I am making

more of this than I should and just need someone to say " suck it up "

and deal with it. I don't know!! The only thing I know is I'm

angry and depressed......and I don't know how to fix it!

[Guest guest]

Hi there,

I am a former Illinois person, now living in southern Indiana. I

don't have RA, but do have a rare disease, Dercum's disease. My

husband didn't always understand how I could be in so much pain,

until he started going with me to my doctors' appointments. Now he

knows first hand that I wasn't making a big deal of nothing! He

still says that I look too healthy to be so sick, but he knows

better.

It's especially hard when you have young children--I don't, but have

a 4-year old grandson and 14-month old triplet grands. I'm currently

on an experimental chemotherapy for my disease, so I do understand

the fatigue, and I was always a very active person too. Now some

days I look out the window at the weeds and say " oh yeah, weeds. "

Then go sit down and read awhile. but I am ever hopeful that

eventually this will change and I will be back to my old self.

Stick with this great group, don't give up, and don't " suck it up! "

We understand you.

Judi

[Guest guest]

I am sorry to hear your dx of RA, but glad you found the group. It

is a devastating disease, and it is so hard to deal with. The MTX

probably helps along the no energy. I use to take it, and It wore me

down a lot. I am now on the humira injections weekly.

I am also having a lot of problems not doing the things I use to, and

it's really depressing. We just have to do the best we can, and

don't give up. It is hard to let people know how you feel, because

most don't understand. But, you have to try to educate your family

on the disease, it's important for you. You have got to have a

shoulder to lean on. It might be a good idea to take your hubby

along, and the doctor can talk to him about your condition.

Also, if you are depressed you might need to seek some help. I have

been on anti-depressant for awhile, but I have decided to seek

therapy, and that will be Wednesday, I am getting worse with my

depression, so wish me luck.

I hope that you find this group helpful, we are a very caring group,

hugs Tawny

> I was diagnosed with aggresive RA last July and my life has done a

> complete turn around since. I'm not sure what to do with myself

any

> more. I use to be very active. I went to the gym 6 days a week,

> rode bikes with the kids, roller skating, etc. etc. When I was

> diagnosed, I was put on methotrexate (15mg) and folic acid. I have

> no energy. I have days when I can't use one arm or the other,

can't

> hold a pen to sign my name to a check, or struggle just to get out

> of bed in the morning. I'm 34 yrs old, married with two children 6

> & 9. I hate having to tell my kids I can't do this or can't do

that

> today. I get upset with my husband who has know idea what I'm going

> through, and believes I'm making a bigger deal out of it than it

> is. I'm in social work and have always been a positive

> person....I'm really struggling to find a positive right now. I

> guess I'm just looking for some people who understand what I'm

going

> through. Hoping to find some positive suggestions or ideas on how

I

> can keep this from limiting me so much. Heck, maybe I am making

> more of this than I should and just need someone to say " suck it

up "

> and deal with it. I don't know!! The only thing I know is I'm

> angry and depressed......and I don't know how to fix it!

[Guest guest]

I know exactly how you feel! I was diagnosed a couple of weeks ago

and have already seen the changes in my energy and mood. My doctor

has me on 15 mg methotrexate, folic acid, bextra, and amitriptilyn.

He just put me on the amitriptilyn last week, but I have seen a huge

change in my mood since then. I was becoming very depressed, but

have a much better outlook on it now.

Tawny is right about taking your husband with you. She gave me the

same advice and I did it. He is now more sympathetic with me. I

don't think he fully understands, but no one can without going

through it themselves.

I wish you all the luck and will include you in my prayers. It

helps to know that there are others out there who really know what

you are going through.

Hugs,

> I was diagnosed with aggresive RA last July and my life has done a

> complete turn around since. I'm not sure what to do with myself

any

> more. I use to be very active. I went to the gym 6 days a week,

> rode bikes with the kids, roller skating, etc. etc. When I was

> diagnosed, I was put on methotrexate (15mg) and folic acid. I

have

> no energy. I have days when I can't use one arm or the other,

can't

> hold a pen to sign my name to a check, or struggle just to get out

> of bed in the morning. I'm 34 yrs old, married with two children

6

> & 9. I hate having to tell my kids I can't do this or can't do

that

> today. I get upset with my husband who has know idea what I'm

going

> through, and believes I'm making a bigger deal out of it than it

> is. I'm in social work and have always been a positive

> person....I'm really struggling to find a positive right now. I

> guess I'm just looking for some people who understand what I'm

going

> through. Hoping to find some positive suggestions or ideas on how

I

> can keep this from limiting me so much. Heck, maybe I am making

> more of this than I should and just need someone to say " suck it

up "

> and deal with it. I don't know!! The only thing I know is I'm

> angry and depressed......and I don't know how to fix it!

[Guest guest]

Welcome to the group!

No, this is not a case where you should feel as if you have to " suck it

up. " RA is a very difficult disease to cope with.

Here, we do understand.

Have you told your physician exactly how you are feeling and how your RA

has affected your life? Perhaps a change or escalation in your treatment

regimen will help you.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Needing positive reinforcement in Illinois

> I was diagnosed with aggresive RA last July and my life has done a

> complete turn around since. I'm not sure what to do with myself any

> more. I use to be very active. I went to the gym 6 days a week,

> rode bikes with the kids, roller skating, etc. etc. When I was

> diagnosed, I was put on methotrexate (15mg) and folic acid. I have

> no energy. I have days when I can't use one arm or the other, can't

> hold a pen to sign my name to a check, or struggle just to get out

> of bed in the morning. I'm 34 yrs old, married with two children 6

> & 9. I hate having to tell my kids I can't do this or can't do that

> today. I get upset with my husband who has know idea what I'm going

> through, and believes I'm making a bigger deal out of it than it

> is. I'm in social work and have always been a positive

> person....I'm really struggling to find a positive right now. I

> guess I'm just looking for some people who understand what I'm going

> through. Hoping to find some positive suggestions or ideas on how I

> can keep this from limiting me so much. Heck, maybe I am making

> more of this than I should and just need someone to say " suck it up "

> and deal with it. I don't know!! The only thing I know is I'm

> angry and depressed......and I don't know how to fix it!

[Guest guest]

I think you should have another talk with your rheumatologist. When

is your next appt? He/she needs to know that you have days that you

can't use one arm or the other. For me, if I am not functioning (and

not having one of my arms is not functioning) I am on the phone to my

rheumatologist right away. Any good rheumy will up your medication

or get you in the office for an exam and consider adding an

additional medication.

I have had RA for a year, and had 9 months from beginning of symptoms

to actual diagnosis before that, but my mom has had it for over 20

years. Before about 6 years ago, there wasn't much to do except

watch the RA progress and hope you could go as long as possible

before being disabled. Today, there are lots of things that can be

done to slow the progression of the disease. The key is, and this is

very important to understand, that you must treat it aggressively

with medication. If you don't do that, you will end up with

irreversible joint damage. Joint damage is painful and can be

permanently disabling. My mom has horribly disfigured feet and hands

and cannot work. I don't expect to ever get like that, and my

rheumatologist promises I won't.

You are on 15mgs of MTX, you could go up some, up to I think the max

dose is 25mgs (I'm on 17.5mgs). Have you discussed the biological

drugs with your rheumy? I was on prednisone until I was diagnosed,

then we added MTX because it had progressed and the prednisone was

not cutting it (plus, you don't want to keep upping the dose of

prednisone, it can do as much damage to your body as RA can). We

soon got to the point that the prednisone/MTX combination wasn't

cutting it either. That is when we added Humira (one of the

biologicals). I think anyone with RA can expect to start meds, have

them work for a while, then not work, then up the dose, add more

meds, and so on until you reach a point the disease is under

control. I think this generally only happens when you start a

biological and find it works for you (it doesn't always). Until you

are on a biological, your disease will likely progress a noticeable

amount (some are lucky and it doesn't and they can stay with just MTX

forever). It can still progress after you are on a biological, and

even those who are on it and it's working have flare ups and have

good/bad days. But the biologicals are the best meds we have right

now.

As for finding support from your family, read about the spoon theory

on this site http://www.butyoudontlooksick.com/ It's not only great

for explaining this disease to others, but it helped me and my mom to

put our limitations into focus for ourselves. Now when I know I

don't have the energy to go to the grocery store, and I'm thinking

what in the heck can I find in the fridge to put in my daughters

lunch - I can recognize that I am just out of spoons. That's all.

No need to feel guilty and blame myself or hate the world. I just

accept it and remind myself I will get some more spoons tomorrow –

and to remember to go to the grocery store before I run out of spoons

again.

The other thing I wanted to mention to you, and that is get back to

the gym. You might not be able to do it until you get more meds, but

when you do, don't waste any time. I have never worked out before,

but it really really helps the RA (more energy and for me, bone

strengthening is important because the use of prednisone has caused

me to have osteopenia - a precurser to osteoporosis - and by the way,

I'm 33 and had over 100% bone density just two years ago). There are

only a couple weight machines that I can't use because it bothers my

hip or elbow, and the trainer there helped me find alternative ways

to work those muscles. And I can't use the treadmill, it hurts my

feet, but the elliptical machine is fine for me.

The final rambling from me is about the fatigue. I can't seem to get

rid of it. So I'm trying to work it into my life. That means making

sure I have extra time in the mornings because the mornings are the

hardest (most days I just can't get moving). It also means I go to

bed the same time as my 3 year old. And it means I try to avoid

stress at work because that makes everything about the RA worse. It

means if I'm going to go to the grocery store, that might be my only

errand for the day and if my daughter and I are going to the park, I

take a nap before or afterward. The way I describe the fatigue to

others is that it's like being pregnant without the baby. People

seem to understand being tired and needing rest when you are

pregnant. They just need help having the same understanding when

it's the result of RA.

I know it's a hard thing to adjust to. I think it was easier for me

because I've watched my mom deal with it since I was in the 7th

grade. And because I have a great rheumatologist that understands

beating the RA into submission with drugs is the only thing that will

make living with it bearable. I never used to take any kind of

medication for anything, but I know first hand it is my only defense

now (it's a love/hate relationship). That, and a positive attitude,

which of course, gets you squat if you can't even use your arms!

I'll tell you what I see as the positive for me. RA caused me to

look at my entire life and change the things that were making me most

unhappy - because I now realize life is too short to be around people

that you shouldn't be around - and thus I am almost divorced (not

recommending this by any means, it was just the right decision for

me). I eat healthier now. I excercise now (because I have to for

the RA). I have slowed down my work schedule which means taking care

of my daughter and taking care of myself are the top of the priority

list, as they always should have been. I don't think I would have

done all that if not for RA. I know I wouldn't have.

Jennie

> I was diagnosed with aggresive RA last July and my life has done a

> complete turn around since. I'm not sure what to do with myself

any

> more. I use to be very active. I went to the gym 6 days a week,

> rode bikes with the kids, roller skating, etc. etc. When I was

> diagnosed, I was put on methotrexate (15mg) and folic acid. I have

> no energy. I have days when I can't use one arm or the other,

can't

> hold a pen to sign my name to a check, or struggle just to get out

> of bed in the morning. I'm 34 yrs old, married with two children 6

> & 9. I hate having to tell my kids I can't do this or can't do

that

> today. I get upset with my husband who has know idea what I'm going

> through, and believes I'm making a bigger deal out of it than it

> is. I'm in social work and have always been a positive

> person....I'm really struggling to find a positive right now. I

> guess I'm just looking for some people who understand what I'm

going

> through. Hoping to find some positive suggestions or ideas on how

I

> can keep this from limiting me so much. Heck, maybe I am making

> more of this than I should and just need someone to say " suck it

up "

> and deal with it. I don't know!! The only thing I know is I'm

> angry and depressed......and I don't know how to fix it!