Re: Stuck at Denial

[Guest guest]

Leanne - you are only a few months ahead of me. One thing I hope

you have gleaned from this group is that more is involved here than

just pain relief. At first I was thinking that just aspirin and

NSAIDS would be enough, just so I could control the pain and get on

with my life. But I found out that the disease continues to DESTROY

your joints even when you are controlling pain. That is what the

DMARDs and biologic drugs are used to stop - the irreversible damage

that is being done even when you are medicating the pain. After

just one major flare in my hands, I already have some damage to 4 of

my fingers. YEOWWW!!!! Please talk to your rheumatologist about

medication that can actually stop the damage and not just mask the

pain.

Now, about families. Mine is also NOT getting it. I'm getting more

and more assertive about what I can't do. I'm reading them portions

of what I'm finding out about PA. I'm staying in their face about

it. I've quit trying to be brave and I've quit trying to stifle the

tears. I'm letting it all hang out and they can either be here with

me or they can run away - their choice. What good are they to me if

they can't deal with this and help me deal with it? I'm not going

to apologize for being ill. I didn't cause it; I didn't ask for it;

I'm not enjoying it. It's time for husband and grown daughters to

step up to the plate and give back at little of what I've given them

over all these 35 years - unconditional love and support and

patience and selflessness. So there! Boy, that's feels good!!!

About the rash - did you have P before you developed the PA? I am

one of those, supposedly few, who got the arthritis before the P.

The P started on palms, then soles of feet. Only when this major

flare started did it creep around to other spots. First my elbows,

then my shins. The elbow rash looks pretty typically like P. But

the shins are just peeling, like if I had gotten a mild sunburn.

The derm wonders if it' P or if maybe it's an effect caused by

swelling. I had some pretty bad swelling of my lower legs during

the worst of the flare. After the swelling went down, the peeling

started. Does your rash look like plaque P, or like guttate P, or

like something else? Do you see a derm? If not, I would go to one

and be sure to tell them you're diagnosed with PA. I find that

seeing both a rheumy and a derm is a good thing. They will work

together.

best regards,

sherry z

>

> Hello everyone! I was diagnosed about 7 months ago with PA. I

have

> been affected from my neck all the way down to my hips. The

newest

> symptom I have is a rash it started on my left arm just above the

> elbow then went to my right arm just below the elbow and now it's

on

> my chest. I've been going to a healthclub since last October and

my

> muscles seem to be getting weaker instead of stronger so I kind of

> stopped going a few weeks ago. Do any of you think the rash and

the

> muscle weakness are part of the PA? Do I need to get more testing

> done? I know that I'll probably end up on some kind of drug in

the

> future but am not ready to go there yet.

>

> I read the post on grief and I seem to be stuck in the denial

> stage. I just have been going about my daily life all of these

> months acting like nothing has changed except I'm always in a lot

of

> pain. I feel like I'm getting ready to move to another phase of

the

> grieving but I wonder how does one except that things have really

> changed when your family can not seem to be able to grasp it at

all

> in any way.

>

> Still figuring things out for myself.

> Leanne

>

[Guest guest]

Hi Leanne,

You certainly sound like you are ready to move around

within " acceptance " and beyond to me. If you haven't visited this

site,

http://www.butyoudontlooksick.com/personal_essays/

it is good. The " Spoon Theory " essay is good for families. I

understand what you mean about people not getting it. My brother

and his wife are both nurses and they have been for 35 years and

they haven't been able to " get it " . They are just starting to

understand because she has developed osteo-arthritis and it looks

like she is going to have 3 cervical joints fused. But even with the

osteo, she doesn't have the accompanying other symptoms of

fatigue /brainfog /psoriasis /iritis and the host of internal

disorders, pain, and swelling that can occur with seemingly about

every tissue inour bodies. It is not something from which you can

just suck it up and move on. Every movement or activity that we do

can have repercussions - and we never really know what they may be,

and we never know when conditions may change for us. We have an auto-

immune disease and our anti-bodies are continually attacking our

bodies. All that said, however, I have learned the hard way that I

must never again push too hard. I am still paying for the 2000 km

(1200 mi.) road-trip that my family and I took over 8 days at the

end of July. The last 1/3 of that trip (the way home) was what did

me in and I felt it sapping the strength I had worked to build up

over a 6 month period before that. It was a trade-off that I am

still glad I made, because my son has some great memories with his

Dad. We will make smaller trips from here on out. Less driving and

more comuning with our local nature.

[Guest guest]

Sweetie....just know that even though your spirit is not ready to " go

there " yet (to medications), your body is begging you to go there by

racking you with pain. That pain is there for a reason. It's a signal

that your joints are being destroyed. Any doctor will tell you that

pain is an indicator. Don't ignore your body even if your heart is in

denial. Use your brain to overpower your heart and take care of your

body. I'm rooting for you! As Regan used to say " JUST DO IT " . You

can stay in denial while you are in medical treatment. I did. I took

Plaquinel and still did not acknowledge my PA until I could not walk.

Then I got on Enbrel. I might still be in denial but I'm taking what I

need to take to keep this dang disease from being in control of me. You

do the same. -Betz

[Guest guest]

Hi Leanne,

I'm not sure, but your " rash " could be Psoriasis. Have you considered

that? I too had a period of denial, although a short one.

I would advise you to read, learn and talk to medical people and

family/friends. I believe your denial can turn to reality.

Unfortunately then, you need to deal with reality.

Stay well.

[Guest guest]

I just returned last week from an 8 day trip to New York (Finger Lakes region

and Binghamton). I flew by myself because a couple of years ago when we made the

same trip by car I was in the same shape you were on the way home - literally in

tears. We were driving from Tennessee.

Even though I flew this time, it really took the wind out of my sails. After

going through gastric by-pass surgery in March and losing 90 pounds, my joints

were feeling so much better, I felt like I could take on the world. I came

limping back home. I think I walked 4 miles in the Cincinnati airport alone,

which made my bursitis/tendonitis in my Achilles heel rear back it's ugly head

and it is still very sore. It's making me limp which is making my knee and hip

hurt again and on top of everything else, I'm having a Fibro attack!

We just remodeled our home (one of the reasons I ran away!) and there is so much

decorating I want to do. I KNOW now how good I can feel and I want that again.

So, I'm just hanging in there and waiting for it to pass.

Was it worth it? ABSOLUTELY! I had a wonderful week, stayed with my brother and

his wife at their cottage on Conesus Lake and got to play a lot with their grown

daughters and 2 grandchildren. We also went to Binghamton one day to surprise my

Dad who is there for the summer. That was very special - he is 86 and was not at

all expecting to see me! Just seeing his face light up at the " new and improved "

me was and is worth everything.

No, it doesn't seem fair that we have to suffer for a little vacation, but if we

have to to keep close to our loved ones, we should.

My thoughts are with all of you,

Maureen in Tennessee

[Guest guest]

Mo! I'm so glad you got to " vacate " for a bit. That brought a tear to

my eye when you mentioned seeing your Daddy and how special it must

have been for him to see his girl in a better state. What a wonderful

gift to give him. I'm truely happy for you. You have a good attitude

about things and I admire that about you. Welcome back. -Betz