sara

July 4, 2005

Sara,

He is sending all the signals that he does not want to deal with this until

he knows what he is dealing with. This is emotionally very draining and

painful for him. I can understand his apprehension. So to him until he HAS to

deal with this he prefers to ignor it at this point. I would still bring home

lots of reading material and leave ait around. Arthritis Today magizine is

an excellent reading. They also have lots of free pamplets you can order.

_www.arthritisfoundation.org_ (http://www.arthritisfoundation.org) . Keep in

mind you want open communication. If you cut him off as far as including him

in what is going on medically that he will continue to think all is fine.

I feel you are also reading too much into this. I would have probably said

the same thing...wait until you see this " guy " or " doc " event though we know

docs can be male or female.....but more times they ARE male.

I agree with him as far as your day to day life....don't make any changes

until you get some answers. If you need to slow down due to fatigue or pain

that is understandable...but don't change you career plans just yet. There are

a lot of people that do fine and lead normal lives with RA that is under

good control.

From what you are telling me it appears you have some communication problems

as well you are overwhelmed with the kids. Being stuck in the house with

four small children and no break or relief does not sound like fun. I would

again suggest some counselling to deal with these issues. If he refuses to

go...then fine...go for yourself. I would tell him I have a medical appnt and

you need to watch the kids. If that does not work do you have a neighbor or

friend that can watch the kids for an hour or two while you go to the doc.

You have to be creative and innovative when you need a break from the kids. I

don't know how old your kids are..but maybe a mothers morning out program may

work for you or a babysitting co-op. Check with churches for these. Lastly

you did not make these children by yourself...so he does have a

responsibility to be a part of there care and upbringing.

I rasied two special needs kids with a hubby on active duty and always gone

for almost 15 yrs. It can be done if you are creative and persistant.

I had a girlfriend in a similar situation....she finally found her strength

and voice and divorced her hubby...said she could do bad by herself and did

not need him to bring her down...Now her hubby was also sleeping aorund and

pretending to be playing softball and always working.

I want you to think about this. You have always been the rock of your

marriage and family. Your husband is use to your running the house like a well

oiled machine. He has never had to worry about anything....Now suddenly things

are changing. We are creatures of habit and DO NOT like change. He is lost

he does not know what to expect. He is scared. Men deal with these things

differently with indifference and withdrawal.

I have learned in my over 10 yrs working as a paramedic all over the

world..which is a mostly male dominated profession...that men are VERY different

from women and you have to learn the language of a man. I have been where you

are and said what you have said...and I am still here!!! Just be patient and

work through all of this one thing at a time..get help in doing so....and

lastly get a break from the kids.

I would tell him you pay for mothers morning out and drop them off or these

is going to be hell to pay in this house!!!! I need a break!!!

toni

In a message dated 7/4/2005 6:18:45 A.M. Central Daylight Time,

writes:

The RA is something that I will definately facing alone. I will no

longer be offering any info to my DH regarding this unless he asks

first. I do get the feeling that he thinks I'm exaggerating w/ the

fatigue and pain, but there is nothing I can do to change his mind.

I've shown him pics on the internet of what RA looks like unTxed. He

got quiet and just said, " Well, don't change your majors until you

find out what that guy says. " He doesn't even know my doc is a

woman. *sigh*

In spite of his ignorant attitude toward me, I will march on. And

one day, if he doesn't get on board eventually, I will move on. I

know that I certainly deserve better than this and I know I don't

need him ~ or any man for that matter. Someday, he will regret it

but by then, I will be so far gone, he won't know what hit him.

C'est la vie.

Sara

December 17, 2009

Bridget,

I wrote you before about your concerns for your daughter. I have 3 children

(5,4,and 3) and they are very aware of mommy's limitations and illness. I do as

much as I can physically do with them. Most days I push myself too far, but that

is a price I am willing to pay for my kids. I am very honest with them about my

disease and I also hear the question from my children about not being sick

anymore.

I don't think that there is anything wrong with allowing our children to

experience a certain amount of adversity. After all, life is full of setbacks

and disappontments. Are we doing our children a disservice by sheltering them

from this? I don't recommend " letting it all hang out " with your daughter, but

in my opinion it is good to be open and honest with her. My husband and I were

both pretty sheltered growing up and looking back, I don't think it was the

right way to handle us. Kids are so incredibly resilient and sometimes I think

we don't give them enough credit for that.

When I got my PICC line I think my kids were really creeped out so I let them

look at it and I explained everything to them. It was a lesson in anatomy on

some level. Also, I allow them to " play doctor " with me and prepare my infusions

for me, too. They like doing that and I think it really helps them to have some

hands on experience with me and my disease.

I am always certain to let them know that no matter what, mommy is going to be

OK...because I am. I have an excellent doctor, excellent insurance and a

fantastic support network. If I am denied anything by my insurance company, I am

lucky enough that my husband is able to move money around to pay out of pocket

for whatever I need. I am very thankful for what I have and very aware that

there are many people who suffer without any of what I have. This is also an

important lesson for my children to know that not everyone in the world, or even

our neighborhood has what we have. I take my children to the hospital 2 or 3

times per year to donate new toys and this year we adopted an underpriviledged

family in our area for the holidays and we will be giving them a holiday with

some friends of ours. These things are so important for our children.

So, I am writing a novella, here, but I hope you get my points about being

honest with your daughter - with limits, and helping her understand your illness

rather than fearing it.

Best of luck to you.

Lissa

>

> Thank you for the info/encouragement. I have my sister and husband take my

daughter out and do stuff outside the house as often as they can, but that

almost makes me feel even worse, that I can't be there, seeing her enjoyment and

happiness. This disease is evil, it is taking so much from me and my family, I

have missed out on so much this last year. I almost cried today, I was feeling a

little better, so my daughter and I did christmas crafts and made chocolate

covered pretzels while listening to music and dancing, something we used to do

all the time, and she asked me " mommy are you not sick anymore? " 4 years old and

she is that perceptive. Anyway, it is nice to know that I am not the only one

going through this. Thank you!

> Bridget

>

December 17, 2009

Bridget,

I feel your sadness even though my daughters are young adults (21 & 23). My

older daughter has moved to Denver (I live in W. Mass.) and really wants me to

come visit .She called me when she and her dad (we're divorced but friendly)

were walking in the park near our old neighborhood where she was born. I don't

feel well enough to deal with the stress of air travel or the high altitude.

Now my younger daughter, who's in her senior of college in Maine, is going to

move to Colorado as well. It's very difficult to accept the limitations this

disease puts on our formerly active lives.

Wishing you healing and better health in the coming year,

Kim

[ ] Sara

Thank you for the info/encouragement. I have my sister and husband take my