Re: Feeling frustrated

[Guest guest]

Of course I can only speak for me, but I suspect that problem is true of all of

us. This is an extremely frustrating disease and hard to get through. That is

one of the reasons that this group is here. We understand what you are going

through and are glad to listen anytime.

From the littlest of chores to just putting our socks and shoes on, sometimes

our frustration grows.

Please remember we are here for you, so vent anytime.

Walt

[Guest guest]

Hi Joyce,

I think it's an appropriate post.

I believe we go through lots of mental gymnastics about our disease,

every day. It ebbs and flows depending on how well we feel and/or how

well we are treating our disease. Our families/friends don't understand

because we " look " fine. Pain is not usually something that can be

visible. 10 years is a long time. Hopefully you are treating your

disease with a disease-modifying antirheumatic drug (DMARD) or biologic and not

just suffering through each day. Luckily I have successfully treated my disease

with MTX for over 5 years, almost 6. But I still have days (because of the

mental gymnastics) that are as you describe. Why do I have to take drugs the

rest of my life? Why do I have this disease? Why does everyone's eyes glaze

over when I tell then more than a 1 minute blurb about my disease? Why do I have

to respond to " How are You? " with " Fine " just because they don't want to really

hear how I feel?

So Yeah, It's appropriate. Cry if it helps. Stand on the roof and

scream if that works. But ultimately, let it out. Tell them, even if

their eyes glaze over or start nodding off.

Stay Well,

[Guest guest]

Joyce,

 

I can relate with the pain, fatigue, anger and frustration that you're feeling.

Some days it takes all I have to get up, go to work, and take care of duties at

home. Having PA is a life altering experience. Hang in there and don't let it

rob you of your spirit.

Take care of yourself, that's what's important

 

warm blessings,

jane

[Guest guest]

I have only been diagnosed for a few months- but have had chronic pain

for yrs. I VERY MUCH understand how you are feeling. I have an almost

3 yr old and I have a lot of guilt b/c I feel like I cannot give him as

much of me as I would like b/c of the pain and exhaustion I feel. My

husband doesn't quite get it either. Sometimes I feel resentful to him

b/c he gets frustrated w/ me when I don't feel good (which is often).

He says he's worked all day and is tired too. And I get that- but I

don't think he gets what degree of pain and exhaustion I feel. I also

get frustrated and angry w/ my body too. I think if I had the time

during the day to nap and relax and put my feet up (esp for my bad knee)

it would help- but most days that is not possible in my life. I wish I

could offer you some advice or ideas- but all I have is an empathetic

ear. Your posting is very appropriate.

Sincerely,

in MN

[Guest guest]

Joy,

Hi!  I'm Kathy McMahan and new to this site.

I've had pa for almost 25 years now...it sucked in the beginning as the only

ways to get any relief were non-steroidal anti-inflammatory drug (NSAID) and

little else...but now, with drugs such as Enbrel, Humira, Remicade and other

biologics...true relief and a whole new quality of life truly is a reality.

 

I an 48 now and in 03 I had a total left hip replacement and then in 04 a total

right knee replacement.  Both of these operations were a piece of cake compared

to he daily pain I had been in previous to their implantation.

 

The pa has also done a number on my eyes...I have no vision in my right eye and

in order to try and save what vision I have left in my left one...I receive

injections into the conjunctive tissue of said eye every two to three months. 

 

I used to take Enbrel but now am a huge fan of Humira...my 28 year old son also

has been affected with pa in the last two years.  Mercifully my rheumatologist

has known me for over 25 years and could see that my son was headed in the same

direction...my son has also been on Humira for over a year now and it changed

his life.  No pain, no progression...nothing but relief.

 

I'm a warrior and never let this madness get to me...there are no such things

has " bad days " just ones that are more tricky than others.

Those of us who have pa have to think. live and be outside the " box " .  Our lives

though different, are still full to the brim of the rich experiences that this

fabulous life has to offer...change your perspective and change your life!

It Really is that simple...the mind runs the body...fill it with positive

thoughts and then act on them...become your own warrior on pa and see what

happens.

 

Good Luck!

 

If you need anything or just want to sound off I think my email address will be

posted with this email.

 

ciao

Kathy

[Guest guest]

So well said thanks for the encouragement

Jolene

[Guest guest]

Yes,yes Joyce! The fatigue is definitely the worst! I used to be a real bubbly

person, now I can't get excited about anything or if I do I am too tired to

enjoy it when it does roll around. We slap on a coat of makeup, get dressed up

and don't look half bad even though we feel like we're 90. I guess that's they

key- we keep on keepin' on. No choice I guess.

Hope you all find some joy and comfort this holiday season!

Deanna

[Guest guest]

Hi.....my name is Delia and I am new to this group. I have been wondering why I

have been soooo tired lately because I am someone who normally has energy but

the past month I have been sleeping a lot and do not have any energy to do

anything. I have also been in so much pain the past 4 weeks. Every joint hurts

so much.

When I was 28 years old and carrying my son I ended up getting p all over my

stomach. Doctor told me that's not a pregnancy thing and I should have that

checked out. Years later my fingers would get really sore......then my shoulder.

That is when I started going to a specialist and was getting cortisone

injections in my shoulder. My body just got worse after that. Its been over 2

years now that I have pain in all of my joints. I take Celebrex and was on

methotrexate for a year but I stopped taking it about 2 months ago because the

side effects were just too much for me. I go to my doctor on Friday so I will

talk with him about other options.

I have been learning so much from this group. I did not know why other things

were happening to me and now I know it is from my pa. I am so glad I joined

this group. People do not understand.....I almost think they feel like I am

faking it but I have not had one day where I have actually felt healthy in a

very, very long time.

I did childcare in my home for 21 years and had to give it up last year because

I just could not do it anymore. I had a very hard time lifting the babies or

pushing the stroller, everything. I cant collect unemployment or disability

because I was self employed. It is all very hard to cope with.

Delia

[Guest guest]

Hello everybody,

Delia, I sympathize with you! I do understand that tired feeling

compounded by nobody understanding. Before I knew what the problem was,

I listened to my ex-husband and others when they said I was just lazy.

I believed that! How sad, Hey. Now I know better and try and take each

day as it comes. Somedays I feel like I can conquer the world and other

days I am lucky to get through the day taking care of my children.

Hopefully you have a significant other or family to help you. I lack

both and it is overwhelming, but by Grace I make it and will. I am new

to this group also and just learning about PA and everything associated

with it. Hang in there!