Hi and thanks for writing JA
can you tell us what you mean when you say that you got sick?
i think that would help a lot
Rheumatoid Aerthits. sever chronic pain
Hi, nice to see you
Yes I have psoriatic arthritis
not a good year for us here in the North East with arthritis
I am so sorry
I have read your post
and I am sorry that things have broken down a bit here
and I am glad that you are both so invested in your children
we are thanks much
You both sound like terrific humans and great parents
sorry you have psoriatic arthritis
oh heck yea it does s...
ya know it girl
what I have to say is a little provacative
and you would liikely agree that stress aggravates illness
I mean devils advocate
I mean trying to stir things up
Me doing that?
If your kids are 16 and 18
no I am being provacative
I am going to stir up some trouble here
Me, not you
ok go ahead I can take it ....:_
okay I hope so
if your kids are these ages
how long havve you been married?>
oops 20 yrs
what about we prioritze the second honeymoon this year
i see his lack of desire
tell me why its all about the kids?
Its about you too
and you have been married twenty yaers
I think because when marriage was at its worst.....He had little to nothing to do with kids for about three years and he misses the time with them and is trying to make it up
well good he should make up for lost time
I still stick to this
what about Mom and Dad
dont you deserve a weekend away somewhere
thats what I keep saying but he keeps saying "kids", activities, ect..... and taking them on vacation which pisses me off .
yikes me too
I told him I dont want to be excluded even if I cant do all the physical activities
when is your wedding anniversary
so there should be a party
Its a good solution you have, but his lack of desire turns me off.....
there should be a great weekend
well you might not rekindle passion but you can see how it goes
We have no intimacy either...........
where did you two meet? how did you fall in love?
blind date. Cant remember how I fell in love , perhaps it wasnt as romantic or normal as I would like.
more to this story
was he always kind to you before you got sick?
right, you hit the nail on the head. No, but we had positive experiences to balance it out. After sickness, he became worse, and I became over protective of kids and he became worse (anger) a viscious cycle which we fortunately broke, but still arent anywhere back to a relationship as h/w.
so your illness just exacerbated an already not so great situation
Their were very good years of marriage. From my background, I likely didn't have an example of healthy communication. But our time together was always based on shared activity which stopped when I got sick.
He too has limits , emotional limits and communication issues.....
what kinds of activity, athletics?
okay I understand this
Some improvement, but the issues are still there.
you went skiing and did water sports things like that?
yes, we were very active.... mostly sports, traveling all over - right.
and tell me how badly the arthritis has impacted your mobility?
I can walk but have severe pain
have been tried on any of the biologics, enbrel, humira?
I did great on Humira
I'm on cimzia
super! u still taking it?
oh I dont know that medicine I am going to have to look it up
I am now on stellara
same medicine as Humira (a tnf inhibitor)
not working as well but I can still type which is a miracle
and how is the pain?
are you in a lot of pain all the time?
too bad these meds loose effecacy over time for some of us
Augh I know
I hate that part
you start taking it and for six months its heaven and then your heart breaks its straight back to hell again
look not many get life with chronic pain.. So to do u a favor, would you like to think about it and write back when dont have to type as much to me? right I know what u mean.
No I am fine
Its actually good to talk to a client with arthritis
ok I "get it" - most don't... so if a break is needed i understand
makes me feel as if I am doing something important
Yes, i agree.
aahh.. geez you are!
I was probing because I think that while you and I cant do those things we once did
that does NOT make us cripples if ya know what I mean
we are still vibrant people
right. For me, the emotional needs grow when physical abilities are limited.
not to mention gorgeous, both of us
exciting and you are wicked smart
wicked is a massachusetts term meaning amazing
lol.. well look, thanks. Illness can take a huge hit on self esteem so we must tell ourselfs about our qualities !
You are so smart and so thoughtful
ty your cool to talk to and very smart yourself
I think my illness made me a better person a better thaerpist and a better Cathy
I bet you now understand many things you never did before
Wow - you made lemons our of lemonade.... I get what u are saying
I mean lemonade out of lemons
I bet you know so much more now than you did before
I bet you notice things that you never did before
yes, you too?
I hope so
I think I am like you more careful than I was before
with my body
I dont take risks
its like when someone looses their sight and develop other stronger senses .. Yes, thats important to be careful of swollen, weak or painful joint areas.
and when all of us get older
things do not work the same way they did when we were younger
so its not just that we developed arthritis
its part of the human condition
i know theirs a great deal of fear with chronic painful illness, but I try hard not to worry about things I have limited control over.
it doesnt always work though
im still terrified
its a day to day thing
Oh I am sure you are
I think we all learn to take it a day at a time
Oh heck yea
thats normal... look what we are dealing with!
we are pretty human too
its scary when your body turns on you
you dont recognize your hands
or your knees
Right, I know, If you can stand the smell, camphor works great on my hands since I cant tolerate NSAIDS
I cant wear any topicals
because my office mates are too sensitive
My ankles and knees and just about everywhere else is swollen.. You name it, its swollen LOL
so I can only do biologics
Ohh I see.....
rubenesque ankles dear
same as the Queen of England
we have royal ankles now
U are still working - wow!
amazes me too
thats all i can say
but my clients are very very kind to me
so enough of that
now onto you
enough of me and onto you
dont worry, this is important too !!!
What do you do to self soothe?
I know you are in terrific pain a lot
do you take a yoga class?
swim at the Y/
you were so athletic
how do you self soothe?
I have only recently learned to accept my limitations and not feel guilty when something dont get done. No one in my family can ever understand this life, so I have a pet, I study, I do online work when I am not in too much pain, I cook ect...
Im working on that.. Shop, chocolate, music, talk w/ rffriends.
what kind of pet?
sun conure, parrot family, hes like a dog , loyal, always on me and actually sleeps with me.
I think you can do more on this but its a start
exercise for us is so good
and I feel so great when I get out of the yoga class
the other thing
which makes me feel so much better
I live near a college
and they train massage therapists
so for ten bucks I can get a massage once a week
from the students
it dont hurt u?
they need people to practice on
NO the professor knows I have arthritis
and they are very gentle
so physical activity helps a lot
yes, use it or loose it i guess
I say all this stuff because you need to put you in a better place
you need to start to care for you
and then you need to have a chat with your husband
meet my own needs? not look to him
yes you start to become more selfish and put you in a better place
but you also need to talk to him about your marriage because your kids will be leaving soon
and you have to make a plan
i try but perhaps his needs r different. I am turned off when I bring it up, because it's not on his agenda.
I understand this
and I know that its hard
yes kids will leave one day
but you are his wife
you were there before the children came
I bet your children are terrific?
they are but dont all parents say that? or maybe not. I believe they are fantastic.
no most parents say their kids drive them nuts at those ages
if you sit down with him and say Look our twentieth anniversary is in August and I have booked us into (fill in the blanks....best or most glam resort where you live) what will he say?
ok .... its a plan. He may be ok with it
okay I am not finished here
so dont go and run with this yet
do not give me any personal infor at all just give me an idea of what city and state you live in
I love Monmouth
I love it there
so do not go to AC
do not go there
you are not far from me?
I worked in the Bronx for thirty years
and lived in Westchester Co
oohh... yeah ac is now the pits.. Ohh Co.. now. ok
but my best friend lived in Monmouth so I love it
15 min from beach
I hate ya
I just hate ya
I love ya but I hate ya too
i know, i told u i can take it...
fond memories of the Jersey Shore before it was the Jersey Shore if you know what I mean?
oohh, me too...
it was so cool when I was younger
okay so how does your arthritis do in the sun?
major sun sensitivity issues
yes thats what I thought
do you know New Hope PA
not very well...
okay I am trying to think of where to send you
where does your family usually vacation when you go with the kids?
We stopped vacations in 2002 when I got sick. But kids like surfing, play tennis and go biking with Dad. All these things I had to give up. (altough I never surfed).
water was always bad off the shore anyway. LOL
so good youdidnt surf
okay do some research on the web
and book into a romantice b and b for the weekend of your anniversary
present this to him as your anniversary gift to him
and if he wont go
though I think he will go
I will the idea is not bad, and perhaps he will catch on if I find something semi interesting for both of us to do together.. I will think about it. Ok its a plan.... thanks.....
I want to tell you
there is this wonderful romantic little town just over the Jersey/PA line
its Lambertsville in the jersey side
and New Hope on the PA side
loads of charming little B and Bs and cute little stores and restaurants
mix of old hippie, new age and motorcycle gangs. LOL
but so quaint and so clean and you can walk the whole village in one day
they also have a theater there
ok..... I didnt know that, something to research. ok....
that attracts big celebs but the theater is small and in a barn
I was trying to think of somewhere you could go that would not tax your body so much
I saw that guy Mr Spock from Star wars in a play there once
Well its something to think about, the idea is what counts, and the research needs to be followed up on
but do it
you two need to have a bigger talk down the road you know this right?
You know what - I actually Will do it.. thanks... Nice talking with you....
you be well
take good care of you
yes I agree baby steps
You too thanks and please be well........
you too. I will be thinking of you