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Helpful Hints

Exercise and Weight

  • 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 out there.
  • 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.
  • No matter how poorly I felt, I continued a regular, consistent exercise program. This helped me recover.
  • 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.
  • For the osteoporosis I use Tums, Calcimar ( a prescription) and weight training – it helps with bones, appearance and general well being and happiness.
  • For weight loss, patience, perseverance, diet and exercise can pay off! From a 2008 CSRF questionnaire:
    • The average weight gain was 55 lbs.
    • Only 16% reported gaining less than 25 lbs.
    • 72% reported that they had lost “most” of the weight they gained.
    • Of those reporting that they had lost the weight, 21% lost it within 3 months, a total of 38% within 9 months, a total of 62% within 1 year, and a total of 79% within 2 years
    • Of those reporting they had lost the weight, 45% said they had to diet and exercise (55% said they did not need to)
    • Of those reporting they had not lost the weight, 71% were currently taking cortisone replacement, while only 36% of those who had lost their weight reported being on cortisone replacement.

Aches and Pains

  • Massages, orthotics for my shoes, and water aerobics
  • 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.
  • 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.
  • Fosazmax for my osteoporosis has helped my aches and pains.
  • My biggest pain problem was upper back pain. I found that wearing a clavicle strap back brace when doing anything that requires upper body strength really, really helped. Also, posture bras (Pennys), muscle rub with St. Johns Wort (Eclectic Institute), splitting up repetitive tasks, relaxation and pain control tapes.
  • Shoes that are well cushioned helped my foot pain.
  • 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.
  • For the post-op aches, pains, and stiffness, water aerobics helped me immensely.
  • For aches, I use Relafen. 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.
  • 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. I found as I was reducing the hydrocortisone, I ached, but just kept going. My body started producing normal levels after about 6 months.
  • For muscle aches, try Eclectic Institute’s muscle gel.
  • For the aches and pains Relafen, a prescription is helpful.

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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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.
  • 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 treats!
  • 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!
  • 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!
  • 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 to enjoy.
  • 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.
  • 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.
  • 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, not disease.
  • The Cushing’s Newsletter helped me the most!!
  • 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!!
  • Keep a journal – not only doctors visits and medication, but how you feel and what you do.
  • 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.
  • 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.
  • FAITH!!!!!
  • 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.
  • 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 loves it.
  • I find that a good night sleep helps with my muscle aches. Also, remember, this disease is treatable!!
  • 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!
  • II 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.
  • 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.
  • 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.

Dry Eyes and Skin

  • I used an eye wash to help with dry eyes.
  • I use baby oil.
  • We have found that aloe plants help with the dry skin.
  • For dry skin, try Triple Lanolin Aloe Vera lotion by Vienna Beauty products.
  • 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.
  • 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 it worse.
  • I used Mango Body Butter, from The Body Shop and Oil of Olay Body Wash right after a shower.
  • I found Mary Kay Extra Emollient Night Cream and it did wonders.
  • Try Atrac-Tain manufactured by Sween Corp.

Relaxation

  • Doing jigsaw puzzles helped calm me and being outside or just 10 minutes of sitting in the sun helped me feel better.
  • Coloring in coloring books helped me calm down and concentrate on something.
  • I find warm baths help relax me and clear my thinking.
  • Massage has been a life saver for me.
  • I found that music helped calm me when I was feeling distressed.
  • Play with your pet if you have one!

Sleeplessness

  • I tried melatonin after surgery and it really did help me sleep better.
  • I use Tylenol PM for sleep and it also helps the aches and pains.
  • Cramping legs kept me awake. I found a Tums helped.

Fatigue

  • Provical has really helped me with fatigue. I just have to be sure that I take it early in the day.
  • 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.
  • It’s really OK to take a nap, even just laying down for a few minutes can be helpful.
  • Pace yourself!