Families Coping

iVillage Member
Registered: 08-10-2005
Families Coping
20
Wed, 08-10-2005 - 12:34am

I have been diagnosed with RA 3 years in September.
Howevever, my family still has not accepted this.
They want me to be the super mom that I use to be, doing everything for them.
I have gained weight, they do not like that.
I sleep so much more, they hate that.

I have asked them to do counseling with me, they are unsure and so far have declined.
They are not little, Son 19, Daughter 17. My husband is a Family Practice Dr. and understands much more than the kids do, but is very tired of my flares and down times, and the more frustrated my family gets, the more intense my pain and fatigue is.

I was just wondering if any of you out there have experienced these things or anything like them?

Sincerely,
Lilyluvsmom

P.S. I also want to say that my kids are ordinary, wonderful kids, and my diagnosis really has shown me new things in them. They have hurt my feelings so many times. I am at a loss as to what to do.

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iVillage Member
Registered: 03-25-2003
Thu, 08-11-2005 - 10:47am

Dear Lily, I feel I sort of owe you an apology, my post the other night which I just re read was just so blunt ( I am a sort of straight down the line person anyway) but I had just come home from a very stressful shift at work where every patient (all orthopedic cases) had just unbelievable amounts of pain, basically I had a horrendous shift, where we have a problem (or multiple problems) and we just go about fixing it.
So when I sat down here I still had not unwound from work, so I just set about typing a fix it post, just push a button here do this do that and yep problem fixed. When in real life day to day problems dont get fixed as quick a dosing out morphine. So disregard my post if you want too. All families a different and we do things differently and we value different things. I guess your home life will sort itself out, you just need to give your self permission to change things. lell.

( I will add I tend more to muck around here in this RA forum, and post more rubbish, because I am caring for people in pain at work and I dont have it really in me to carry on that role at home....Sometimes I do and then after I click send I think god why did I post that )

iVillage Member
Registered: 11-03-2003
Thu, 08-11-2005 - 1:29pm

You are so welcome, Lily.

Molly

iVillage Member
Registered: 11-03-2003
Thu, 08-11-2005 - 1:36pm
Lell, if you ever dare change the way you post, I'll personally zoom down to Australia and kick some butt!!

Molly

iVillage Member
Registered: 08-10-2005
Thu, 08-11-2005 - 10:02pm
Huge Packer Fan!!!!!!!
iVillage Member
Registered: 08-10-2005
Thu, 08-11-2005 - 10:13pm

Lell,
No need for apology!! Long ago in life I learned to sift advice from others. Especially in a situation like this when we really don't know everything about each other's "walk".
I found nothing offensive about your post.
It was bright, and consise, and many things you said were really helpful.

Peace to you Lell!
Thank you for your wisdom,
Lily

iVillage Member
Registered: 08-10-2005
Thu, 08-11-2005 - 10:18pm

Molly,
You are a joy.
as a matter of fact my daughter is coming with me to my Rhuemy appt. next Wed.
Already, in a few days time I have met wonderful, wise, gentle people who share my pain...literally.
I feel an incredible peace that I hadn't before.

Peace,
Lily

iVillage Member
Registered: 08-10-2005
Thu, 08-11-2005 - 10:20pm

Ditto Molly!!!!!!!!

Hugs,
Lily

iVillage Member
Registered: 11-03-2003
Fri, 08-12-2005 - 12:50pm
I am so glad that your daughter is going with you.

Molly

iVillage Member
Registered: 04-08-2004
Fri, 08-12-2005 - 4:08pm

Welcome. I, like all the others who have responded to you, can identify with your problems. My son was grown when I was diagnosed, but my poor husband has had to deal with all the changes RA has caused in our lives. During one of my very early-on rheumatologist appointments, my doctor asked about my family life--especially my relationship with my husband. He said that a chronic disease can quickly play havoc with family relationships and it was his experience that it was absolutely vital to involve his patient's family in the patient's treatment. He asked me to bring my husband along with me to my next appointment if at all possible. I did, and Gene has accompanied me to almost all of my doctor appointments and has been active in all of our treatment decisions. I could not ask for a more supportive, kind, understanding husband to help me deal with this disease, and I think my doctor's approach in treating the "family" is a great idea. Yes, Gene becomes frustrated and angry at times--just as I do--but, importantly, he is frustrated with and angry at RA--not me. Please--do take your daughter with you, and all the other family members you can muster. We do need our family's help and understanding, and to understand us, they do need to have an understanding of our disease. Since we can keep a stiff upper lip and "carry on" for only so long, this is a great place to scream and yell. We understand.

Rosemary

Avatar for beviej
iVillage Member
Registered: 03-25-2003
Sat, 08-13-2005 - 7:25am
Rosemary that was a hard thing for me to understand in the beginning too that my husband was angry and furstrated with the RA and NOT me.(((((Julie and Lilly)))))Glad you found all of us.

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