I highly recommend
going to see a personal trainer. When I was recovering I wanted
to start exercising again but I didn't know where to start. I went
to a trainer and started out slow. I feel with a trainer I was being
watched to do the exercise properly and effectively. It was expensive
but the best thing I could have done for myself. I did it for 2
months then was confident and knowledgeable enough to do it on my
own. My bone density scan was up 10% after only one year after my
surgery and I completely believe it was the exercise that did that.
One of my "Cushie" friends just ended her personal training sessions
after 3 months, she feels fantastic now and also would recommend
it to everyone. I believe it can be the answer for a lot of people
From our recent
"I tried melatonin after surgery and it really did help me
"Provical has really helped me with fatigue. I just have to
be sure that I take it early in the day"
Pains: massages, orthotics for my shoes, and water aerobics
Pains: For some reason, Orudus, an over the counter med works
better for me than any of the prescription anti-inflammatories.
I sometimes take it before being on my feet for a long time.
Pains: When I was really weak - water exercises. Now that I'm
stronger, regular, mild, exercise prevents my aches and pains -
the stronger I keep my muscles, the less pain I have. If it gets
really bad after I overdo - a massage, a visit to the chiropractor,
10 minutes on a stationary bike followed by Nautilus weights set
very light, a hot tub and ice. Experiment with the order, it makes
a tremendous difference to me.
Pains: Fosazmax for my osteoporosis has helped my aches and
Pain: a clavicle strap back brace that I wear for doing anything
that requires upper body strength, posture bras (Pennys), muscle
rub with St. Johns Wort (Eclectic Institute), splitting up repetitive
tasks, relaxation and pain control tapes.
Foot Pain: Shoes that are well cushioned.
Skin Care, Fatigue, etc: I use the realtors advice of location,
location, location translated to attitude, attitude, attitude!!!
I am tired and I hurt but by constantly having, "Someone to
love, something to do, and something to look forward to" I
forget the Cushing's problems and concentrate on other things. If
that doesn't work completely, Tylenol helps. I ALWAYS have a ticket
or reservation for a future event in hand. The farthest off now
being a trip to the Passion Play in Germany.
and Night Sweats: I found that taking Vitamin C helped with
my joint pain and dry skin. Also, for some reason, a Tums would
get rid of a night sweat.
Recovery: For the post-op aches, pains, and stiffness, water
aerobics helped me immensely. Also, keep a journal of all that is
happening with you personally and medically.
and skin: For aches, I use Relafen; for skin, I use baby oil.
To deal with pain; relax in a recliner or on the bed. Close your
eyes and take deep slow breaths and try to focus on something other
than the pain. It helps some.
and Skin: Keep moving. If you ache in the morning, get up and
move and do housework. Usually, you feel better. At night, an Extra
Strength Tylenol will usually let me sleep. For dry skin, I found
Mary Kay Extra Emollient Night Cream and it did wonders. I found
as I was reducing the hydrocortisone, I ached, but just kept going.
My body started producing normal levels after about 6 months.
Coping: If you have energy, plant an inside garden or if you are doing
better, make a small outside garden. I do oil painting, writing,
piano, guitar and email other Cushing's patients. I really have
high days and low days, both physically and mentally. I remember
that the idle mind is the Devil's workshop. Remember God created
you for a purpose and you are anointed with a purpose or talent
in life and don't forget it. You may have to dig for it, just like
my dachund digs holes in my carpet!
Coping: spiritual music, prayer and just believing in the
good Lord to take care of me.
Skin: To help me cope: faith, massage, working with animals
and playing with children. For skin care, I like Estee Lauder, Revlon,
Clinique or Freeman Products.
pain and skin care: I take 800mg of ibuprofen and tell people
if am fatigued. They don't realize all that we go through from Cushing's
and recovery. I take nightly baths to unwind. For coping, I pray
a lot. God knows what you're going through. For skin care, I highly
recommend Oil of Olay face cream and lotion. It really helps face
dry skin, and stress: I literally take to my bed when my feet
throb so much it hurts to even stand. I use Eucerin crème
on my very dry feet which helps stop them from cracking. I cope
by not overdoing and admitting to myself that I can only do so much.
I just don't stress out over little things anymore - so what if
the house is dirty - I live with it.
Coping: I have found that you shouldn't make excessive demands
on yourself. Accept your limitations and accept help if necessary.
Coping: The Cushing's Newsletter helped me the most!!
Coping: I have found that the best thing to do on those mornings
I can't pull myself out of bed, is to call for my girls. They climb
into bed with me and we have a while to talk or read books, tell
jokes, or just snuggle and I tell them how much I love them both!!
It helps me get through the really tough days!!
Coping: Keep a journal - not only doctors visits and medication, but
how you feel and what you do.
Coping: As for coping, may I suggest those who don't have computer access,
write to Cushing's pen-pals. It's worth the giving and receiving.
Coping: Since dealing with the aftermath of Cushing's for 28 years,
I have come to the "day at a time" lifestyle. I pray for
strength each day and I'm thankful for all the good things that
come into my life.
Coping: Right after surgery, I did the minumum. Cooking dinner and grocery
shopping was about all I could handle. After about a month, I did
one physically challenging activity a day, very slowly. But after
about two months, I got depressed staying home so I went back to
my volunteering at the food closet and library, two days a week
about three hours a day. The bending and reaching was very tough,
but it was nice to see all my friends. I tried walking but I was
not motivated enough to do so regularly by myself. After ten months
I joined the Tai-chi class at the senior citizens center. It was
just my pace! I think Tai-chi being a slow exercise, easy on the
joints helped me to become more physically mobile. It also challenges
your coordination and balance. I think going back to my volunteering
helped a great deal in not feeling isolated. I think it's important
to push yourself a little bit even when you don't quite feel up
to it. It makes you focus on something other than how you are feeling.
Coping: Do some volunteering. I have found it helps me as much as it
does the people at the nursing home I go to. Sometimes I take my
dog with me and he does all the work for me!! They love it and he
Coping: I find that a good night sleep helps with my muscle aches. Also,
remember, this disease is treatable!!
Coping: I need to find joy and pleasure. There are many things I can still
do that bring joy. You will need to decide what is right for you,
but, here are a few ideas.
1. Get a
manicure, pedicure, or a facial.
2. Start a home correspondence course. Pick a subject that interests
you, maybe painting, drawing or writing.
3. Try to read the classics. If reading is a problem, look for
large print editions or books on tape.
4. Focus on your spiritual growth. This could be reading numerous
books on healing, joining a Bible study group, or doing meditation.
5. Experiment with different recipes; Italian, Chinese, French,
low fat, etc.
6. Make a collage of old photos for family or friends or take
a craft class.
7. Grow your own herbs.
8. Choose several stocks, and just follow the stock market.
9. Take vitamins and read about them.
Coping: Find another member to write to or talk to. Everyone needs to
talk to someone who has been there, or is in the same stage as you.
Even having just one person to talk to makes a world of difference.
Write or e-mail, or call each other. You can take turns calling
every two weeks. If you limit your calls to about a half hour, it
should cost you less than $5.00 a month.
Coping: If you are too tired to do anything, stop thinking
about the whole thing that needs to be done. Break it down into
pieces. Too tired to wash the dishes? Just wash the glasses. Then
rest. You might do the silverware next. Rest again. There is no
rule that all the dishes have to be done at the same time! If you
used to dust the whole house, try dusting one room each day. If
that's too much, dust everything on one side of the room.
Coping: If you don't have family who can help, be honest
when friends ask if there is anything they can do. Tell them that
you could really use a good house cleaning once a month, or someone
to vacuum for you. Ask a friend to pick up some groceries for you,
or take you to your doctor's appointments. Ask if they know of someone
who can mow your lawn for a couple of dollars. They might volunteer
to do it themselves. You'll be surprised at how much people really
want to help. They just don't know what to do unless you tell them
what you need.
Coping: I have wonderful support from my husband and 10-year
old daughter. But I think I used to try to be super mom. Now I notice
things that I used to do regularly that are not getting done, and
guess what? Nobody cares! My husband hung a sign in the kitchen
that says: My house is clean enough to be healthy and dirty enough
to be happy. He doesn't spend all of his spare time cleaning. And
the house looks fine! Friends come over to visit and ask, "How
do you manage to keep your house so clean when you're so sick?"
It gives me a great opportunity to praise my husband and daughter.
Coping: I used to worry that I wasn't giving my daughter
enough attention. But sometimes, instead of lying on the sofa, I
lie on my bed to rest and she joins me. She might tell me jokes,
read a story, or just lie next to me and talk.
Coping: I had trouble cooking dinner. There are wonderful
prepared frozen meals that will get you by on the worst days. Soup
is simple to heat. My husband still does most of the cooking. But
now I find things to cook that can be done a little at a time. Rest
in between. Also, just because you always cut up vegetables standing
at the kitchen sink doesn't mean you have to do that now. Try washing
them at the sink, then cut them up sitting at the kitchen table.
If you're too tired to finish, put them in a bowl of water and rest.
Soups, stews, and pasta sauces are great for doing in shifts.
Coping: Can't curl your hair everyday? That's OK. But keep
a hairbrush handy in case someone comes to the door. Then do something
to help yourself feel pretty. Put on some perfume, or lipstick,
or polish your nails. You're getting a new body. Give yourself some
Coping: Is your memory failing you? Keep a steno tablet and
pencil close by. Make notes for yourself, even if you think you'll
remember. It helps to voice your plans. Say out loud "I'm cold.
I'm going to the bedroom to get my sweater." That will help
prevent the many times you spend standing in the room wondering
why you're there!
Coping: I used to have trouble remembering what my husband
said as he was going out the door. Usually it was something like,
"I'm going to the drug store. I'll be back in 15 minutes."
Someone would call and I would forget what he just told me! I learned
to write it down as he left. He jokes that it took some time before
I got used to that. I'd forget that I wrote it down!
Coping: I had so much trouble concentrating that I would
get 2 or 3 pages into a book and have to go back and read it again.
But I could handle magazines and The Reader's Digest because the
articles were short and didn't require much memory from page to
page. I couldn't even follow the plot of most TV shows. So I listened
to the radio a lot. I joined a music club and ordered 12 new cassettes
Coping: Pray. Some people ignore or won't admit the wondrous
feeling that comes from praying and trusting Someone more powerful
than you. I find that praying in bed helps me fall asleep. I can
"talk out" the troubles of the day and let God handle
Coping: Notice the small improvements. I wrote down a list
of ailments before and after my surgery. Every few weeks, I update
the lists, showing what had improved, what was worse, what was new.
Now, even the new problems are getting better. I KNOW! I have a
list that proves it! (I also take my list with me each time I go
to the doctor. He tells me it helps him tremendously. I also keep
lists of anything I want to ask him about at each visit.
Coping: Go easy on yourself. It's OK to rest a lot. It's
OK to cry. It's OK to forget things. It's OK to grieve for the years
you have lost due to Cushing's. But you must remember to look forward
to the wonderful day when you can say, "I feel fine,"
and truly mean it.
Coping: My husband did something one day that really made
a difference for all of us. Like many of us, I had trouble controlling
my emotions. I would cry at the slightest provocation. One day,
I started crying. My husband held me, while my daughter kept asking,
"What's wrong? Why is Mommy crying?" He said, "It's
OK. It's just part of Mommy's recovery process." He didn't
say it was part of my "disease," as I had been doing.
Now I, too, talk about my recovery from Cushing's. Attitude is very
important! It takes a long time, but look at it as a time of RECOVERY,
Dry Eyes: I used an eye wash to help with dry eyes.
Dry Skin: We have found that aloe plants help with the dry skin.
and Aches: For dry skin, try Triple Lanolin Aloe Vera lotion
by Vienna Beauty products and for muscle aches, try Eclectic Institute's
Skin Problems: For post-Cushing's dry skin - drink a lot of water, Focus 21 Serplasma
lotion (in beauty supply stores) and DML Therapeutic Dermatological
Moisturizing Lotion in pharmacies. Always use sunscreen, prevent
bug bites with repellent. For itching - Sarna by Stiefel Labs (steroid
free) and Tea Tree Oil antisepic in health food stores. For scalp
itch - aerosol spray from a dermatologist. Bruises - prevent by
being more careful, put ice on immediately after banging against
something as ice seems to keep it from spreading.
and Lips: For dry facial skin I use several layers of moisturizer
and a foundation that contains oil (Rachael Perry at health food
stores). For dry cracking lips - Vitamin E ointment -chapstick makes
Dry Skin: I used Mango Body Butter, from The Body Shop and Oil of Olay Body
Wash right after a shower.
Fibromyalgia: Since my Cushing's, I have been diagnosed with
Chronic Fatigue Syndrome and Fibromyalgia. I currently take several
remedies that include raw adrenal extracts and a few other raw organ
extracts and they do wonders for my temperament and energy levels.
Also, for the fibromyalgia, when it is really bad, Vioxx really
does help the achy feeling. Also, are there any other Cushing's
survivors who after 16 years still have not lost weight and maybe
have Chronic Fatigue and/or Fibromyalgia? I am beginning to think
that I am the only one!!
Fatigue: If you don't have high blood pressure, I've found a cup of real
coffee helps. I know it's not good for your bones, but it helps
me particularly when I have to drive. I know there are some days
you can't move, but if you have a day that you feel you may be able
to move, push yourself. Walk around the house and do whatever your
doctor allows. It is true moving helps fight arthritis. It helps
me. When I can't do my normal 20 minutes of aerobics, my arthritis
starts coming through.
Relaxation: Doing jigsaw puzzles helped calm me and being outside or just
10 minutes of sitting in the sun helped me feel better.
Relaxation: Coloring in coloring books helped me calm down
and concentrate on something.
Relaxation: I find warm baths help relax me and clear my thinking.
and pain: Massage has been a life saver for me.
Depression: To cope with post-surgical depression, I started a list of improvements
I noticed, starting in the hospital. By the time I gave it up, I
had counted 38 improvements!
Recovery: No matter how poorly I felt, I continued a regular, consistent exercise
program. This helped me recover.
Pain, Skin, Osteoporosis: I use Tylenol PM; for the aches and
pains Relafen, a prescription is helpful. For dry skin, try Atrac-Tain
manufactured by Sween Corp. For the osteoporosis I use Tums, Calcimar
( a prescription) and weight training - it helps with bones, appearance
and general well being and happiness.
Etc.: I found that music helped calm me when I was feeling distressed.
Also I needed to talk to others with Cushing's to know what they
had experienced, so I knew more about this strange disease. I often
found myself doubting what I was feeling, since many symptoms were
so weird. I had a large sign on my desk that said "syndrome"
and "treatable" which reminded me what I was dealing with.