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Living Better Despite RSD
By
Linda
Lang
I've made a New Year's Resolution and
I need your help to keep it. I want to see myself as a person
who happens to have RSD, rather than having RSD become me.
I can allow RSD to deprive me of the joys of life, or I can
find workable solutions that allow me to engage in life more
fully. All of us have to deal with the obstacles of RSD —
whether it be from physical limitations, pain, side effects
of medications, or the emotional distress caused by losing
much of what we used to be.
We have all encountered problems we
can't overcome, but we have also found some practical solutions.
Instead of each of us re-inventing the wheel, why not share
the things we have found that worked? Do you use any assistive
devices that make everyday tasks easier? Have you found a
brand of socks that will actually go over very swollen feet?
Do you have a satisfying hobby that engages your interest
enough to make the pain more bearable? And are there specific
problems for which you haven't yet found a solution? By sharing
this information, I can help keep my New Year's resolution,
and we can all live better — despite RSD.
Planning for an Unplanned Hospital
Visit
One of the ways to live more successfully
with RSD is to plan ahead—for both the good and the bad. I
thought I was getting pretty good at that, until I was admitted
to the hospital through the ER. I was quite ill and not able
to think clearly. The ER staff played 20 questions and nothing
was making any sense to me. I couldn't focus enough to help
them (or myself). How much easier it would have been if I'd
been prepared! I've now learned to carry with me at all times
the following information:
- A very brief medical history
(include diagnosis and affected body parts, also any
diagnostic info that may be normal for you but not
others, i.e., high or low blood pressure, edema, restricted
blood flow, etc.)
- A list of current medications,
including strength, dosage and what it has been prescribed
for. If you are on heavy dosages of opiates, it is
a good idea to have this information signed by your
prescribing physician.
- A list of your doctors (including
phone numbers) and what they treat you for.
- Special treatment instructions,
including which arm to use for blood work and IV,
areas of your body that should not be touched, assistive
devices or splints that you use, etc.
- A contact person, who ideally
could function as your advocate
- Insurance information
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I placed a copy of this information on
my refrigerator, and in each pocketbook. I will never leave
home without it!
I cannot stress enough the importance
of having an advocate. Under
the best of circumstances, a hospital stay is stressful. Hospitals
are understaffed and it is easy for a patient to get overlooked.
In my case, I was not able to stand up for myself. There were
communication problems between my attending physician, my
pain management specialist, the house doctors and the nurses.
Orders were disregarded or not carried out. It was at Mary
Beth Ludington's insistence that I asked a friend to become
my advocate and settle these problems. I am very grateful
to her for that advice. I am also grateful to Jim Broatch,
Wilson Hully and Joe McCue (who called from his hospital bed)
for their support.
In the next issue, I'll cover a well-planned
trip - this one was to Alaska and not the hospital! I look
forward to sharing all of your questions and solutions in
the upcoming newsletters - so please let me hear from you.
Comfort Tip
For those cold limbs, nothing is more
comforting than warmth. Place your clothes or pj's in the
dryer for a few minutes before putting them on. It feels great!
We need to hear from you!
This is your newsletter. We would like
to address issues that you want to know about or that concern
you. We'd also like to report on news that you might have.
Have you found a pain clinic that is wonderful? A new treatment
that has helped? Do you know someone who is an "RSD hero?"
Do you have an RSD success story? You can contact the newsletter
staff by email at: Jwbroatch@aol.com
or regular mail at: P.O. Box 502, Milford, CT 06460. |
