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Parenting with Arthritis
You said...
You said...
Wow! What a great response to our
Parenting Survey! We have a great group of wonderful parents out there!
We're going to spend this week discussing the challenges and triumphs of
being a parent with arthritis.
We'll start with some comments from
you! We asked: What are some of the problems you encounter that
"normal" parents don't have to deal with? And how did you
solve them?
And you said:
"I have two young boys 4 and 2. If
my 2 year old falls asleep in the car close to nap time, I have a very
difficult time carrying him up the steps to his crib. So, I try to keep
him awake until we get home. I have ankle problems. I cannot
"run" after my kids. So, I keep them very close by in parking
lots, etc." -Sue
"well... the splints most parent's
don't wear splints I have to on one wrist, the fatigue, the other
personality that (sometimes) takes over when I'm flaring extremly BAD
the "I'm not feeling well today guys" They know it's the
arthritis. Explained to the kids just why? I don't feel well it's
actually all they've known so it's really not like a bombshell." -Teena
"Picking Amanda up and down brings
pain to my knees. Also, waking up and trying to get to her is sometimes
slow due to early morning stiffness." -Bridget
"I have found that getting them to
all their activities has been a real challenge at times. Luckily I have
friends that help out in a pinch." -Beth
"When they were babies I had a
hard time getting them in and out of the crib and changing their clothes
while supporting their head. My husband did most of that for me.
Sometimes I can't do activities like bike riding with them, they go with
their father. He makes up for most of the physical things I can't do,
thank God. I am really tired a lot too and can't do all that class
mother type stuff. It has always been like that for them so it seems
like they are ok with it. Sometimes I think they get scared they are
going to get arthritis. I tell them if they get it, they get it, there's
nothing they can do to prevent it. At least now there are new drugs so
if they do get it they won't necessarily be crippled or deformed."
-Maria
"Not feeling well most afternoons,
and finding that I had to lie down at about the same time that they came
home from school, since it was when I came home from work. Also not
being able to go on any class trip when it required a bus ride, since I
would end up not being able to move. Also always being too tired to do
many activities." -Barbara
"Fatigue, dealing with medication
side effects, photosensitivity, inability to do things normal parents
can do with their children like rough housing and strenous outdoor
activities such as motorcycle riding, snowmobiling, snowskiing,
waterskiing." -Stephanie
"Keeping a house running smoothly
with regular nutritious meals-haven't really solved them, except have
lowered my expectations." -N.
"I haven't figured out how to
handle them yet." -Cris
"Today...painful elbows...padded
rocking chair arms with blankets and using a "snugglie" for
when I need to carry her." -Amy
"Trying to change my sons diaper
or give him a bottle when I have a "flare-up" in my hands is
very hard and painful.....I have a toddler also, that by the end of the
day, I am exhausted from pain and I can't play with her. This is hurting
her and I." -Amanda
"Fatigue!!! I just explained to
both of my daughters that I am not able to do a lot of things that I use
to do with them like play basketball & tennis, or run because I know
have a disability, and they both seem to understand now that they are
older." -Pam
"Mainly the overwhelming fatigue I
feel on a daily basis. I work full-time, and many days don't have the
energy to go anywhere else when I get home. At this point, I haven't
solved this problem.' -Lynn
"I didn't call them problems -
instead I said they were challenges - and a victory was always possible.
The biggest "Challenge" was (and still is) keeping this RA
from effecting the quality of our family life. Mountain climbing was out
but short hikes were fine. Instead of feeling guilty for not having a
spotless house - I learned no one noticed a layer of dust but they did
notice - and resent - a parent too worn out from still trying to
"DO IT ALL". The truly important things got done." -Diane
"Just the day to day struggle with
fatigue and the occasional flare- I think that babies can tell when
their mommies aren't feeling well and cut them some slack..."
-Debbie
"Initially I dealt with disability
issues, such as how to pick up and carry a heavy baby with sore painful
hands, how to keep up with 2 little kids while working and in pain and
exhausted....
Now, 3 1/2 years years later, I am eternally grateful that arava has
really brought my disease under control. But now I deal with managing
lots of prescriptions and refills, while keeping up with a 4 year old
and 7 year old. I try my best to keep my life as "normal" as
possible...but it's a pisser when there's a line at the pharmacy and
we're late for soccer practice...and oh no, it's been almost 7 weeks
since I got my labs checked...it's really time consuming to keep up with
a chronic disease." -S.
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