Kathe - your burns

[Guest guest]

Kathe,

So sorry to hear of your accident with the boiling water. I hope your hand

heals quickly and that you aren't in a lot of pain now.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

Re: [ ] Family support? (long post)

> Hi :

>

> This is a very common theme here. We have an invisible

> illness, no one else can see our pain, and there are

> often no obvious physical problems to identify us as

> people in pain. I have been dx now with RA for 7

> years and I think at times my family still does not

> totally get it - they are really pretty understanding

> and do help when I ask for it, but, still, they will

> never understand like we do, and I would never want

> them to.

>

> Last week, I was trying to pour out a big pot of

> boiling water and pasta into the drainer in the sink.

> My right grip weakened and I dropped the pot, with the

> water and pasta being poured over the top of my right

> hand. Second degree burns. Now that pain was

> something my family could see! No need to explain

> that it hurt, that healing will take time, and I will

> be scarred from it. They get that kind of pain, that

> injury they can see. RA pain is not that easy to

> explain, even though that pain is very real and will

> be with me for the rest of my life. The scars are

> inside, and not visable, but are no less real than the

> scars from my burn will be.

>

> When I was first dx, I would find articles about RA on

> the internet, information, etc., and email it to my

> husband. Somehow it was easier for him to read about

> RA, rather than my sitting and talking to him about

> it.

> I also got books from the library, left them out in

> full view for my hubby or kids to check out if they

> felt like it, and read some of the big points about RA

> outloud too - in small bits - to whomever was sitting

> by me. Have you thought of taking them to the doctor

> with you? Also, this is not fixable and men like to

> fix things - my hubby and son understand as best as

> they can, but emotionally I still connect better with

> my daughter, who at times seems like she can feel my

> pain herself. She has learned to read my face and

> body language, and knows when I am having a bad day

> without my having to say a thing.

>

> I know how hard it is to feel alone in your pain,

> trapped within your new reality, and wishing it all

> could just go away. I am sure that your family knows

> that it is not all in your head, but maybe they are

> afraid of what will happen to you, what will your

> future be, all those things that you are asking

> yourself, and if they just don't acknowledge it, it

> will all go away.

>

> My kids and hubby were scared, for me, for the family,

> everybody's future has been altered in different ways

> by my having RA. I had to stop working, down to one

> income, and that has been hard on my husband, and on

> my self-esteem. My kids were 15 and 13 and they

> thought it meant I was going to die. My grandmother

> had RA and was cripped by it, I thought that was my

> future. It threw us all for a loop, but we got through

> it. You and your family will too.

>

> I am sorry that you are not getting the emotional

> support you need, but know that we are always here,

> and do understand. Just give your family some time to

> get adjusted, maybe do some of the things I mentioned,

> and I hope that they become more supportive of you as

> time goes by. I hope this helps in some way.

>

> Kathe in CA

>