Petition to Add Dercum's to SSDI List

There has been some talk for years on this and finally our fellow DDer, Christine McGrath, decided to take action.  We need as many as 100,000 signatures to make this happen so all family and friends should be asked to forward on.  This will help many Americans that suffer from this disease traverse the already very difficult journey on getting monetary assistance from their disability.

The signatures need to come from United States residents but everyone can help by forwarding a message to any of your relatives or friends in America.

Please note:  To build a stronger case for SSDI, make sure that you have other ailments well documented with your doctor.  These ailments can include but are not limited to:  diabetes; fibromyalgia; depression; anxiety and other autoimmune disorders.

Good luck!

10 Pieces of Advice for Dercum's Patients

In the last 15 years of my life, I have battled with Lyme's Disease and Dercum's.  In that time I have learned a few things (mostly the hard way) and I am still learning.  Here are just 10 things that I would like to share at this time:

 



A Warning About Eye Care and Dercum's Disease

Thanks so much to      Lisa La Bruyere Moon   for sharing this information on Facebook.

To all my DD bros and sistas, get your eyes checked ASAP. Apparently the vascular complications cause Lattice Retinal Degeneration. I was having vision problems and thought that I was diabetic. After pancreatic procedure blood sugar leveled out so my doc sent me to eye doc. Had holes in retina and nerve tissue behind eyes. Had laser surgery to prevent further deterioration. Hopefully this will prevent retinal detachment and blindness.


Me - I've already had a retinal detachment and a cataract starting so I agree - make sure you get your eyes checked regularly!

Getting the best price for prescription drugs

Thanks to Jean for finding this for us!

Tips for getting the best price on your prescription drugs

Posted at: 05/10/2012 10:24 PM on www.kob.com | Updated at: 05/11/2012 9:02 AM
By: Peter St. Cyr


Americans spend billions of dollars every year on prescription medications, but they're not always getting their drugs at the lowest price.

Our 4 On Your Side team went shopping and found prices can vary by hundreds of dollars for the same medication depending on where you shop.

When new mom Theresa Hamilton, or her baby, gets sick the last thing she thinks of doing is looking for a better deal on her drugs.

“I just want to get my pills, go upstairs and fall asleep,” she said. Hamilton isn't alone.

Most people KOB talked to go to the same pharmacy time after time. They like the convenience of a nearby drug store. Corner stores may be convenient, but they're not always the low cost option.

Casa De Salud Doctor Andru Zeller, who helps low income patients find low cost drugs, says tracking changing prices isn't easy. “In essence, it's like following the stock market without a newspaper or television,” Zeller said. Still, he's willing to make calls and go online to find the best deal. Zeller told 4OYS no single pharmacy can claim the lowest price on every drug. “Sometimes they'll charge a lot more for one med, but have a great price on another,” Zeller said. He likes Walmart's $4 program, because it covers most of his patients needs. ”But if you step outside that group of medicines, which are on the $4 plan, you see a significant amount of money for some of the meds you would think would be less expensive,” Zeller said. Zeller said the best way to save money is to call at least five or six pharmacies and ask for a price quote. Or check online stores. 4OYS discovered that some internet pharmacies sell drugs for 35 percent or more off regular store prices.
“Online plans are reasonable," Zeller said. "Make sure it's easy to order, order early, and don't run out before the next delivery arrives.”

Consumer reports recommends consumers talk to their doctors before getting a prescription filled, and always ask them if a generic drug is available for whatever they prescribe.

VALUABLE TIPS
1) Always check prices at five or six pharmacies.
2) Check prices online
3) Buy in bulk. Prices for a 90-day supply are almost always cheaper.
3) Check with drug manufacturers about their patient assistant programs.
4) Buy a higher dosage and split the pills.
5) Or, if you need a high dose pill, ask your doctor if you can buy and then take an equal amount of pills to equal the dose that was prescribed.

No matter what you do don't stop taking your meds because you can't afford them. Ask your doctor, insurance company, or pharmacists to help. If you buy online make sure you are using a verified pharmacist. Some dishonest vendors send fake drugs. And, while drugs may be cheaper just across the border Dr. Zeller said going to Mexico or Canada to fill your prescription is illegal.

Here's a list of verified online pharmacy sites:
www.drugstore.com
www.familymeds.com
www.walgreens.com
www.cvs.com
www.costco.com

These website can you you find patient assistance programs.
www.rxassist.org
www.pparx.org
www.benefitscheckuprx.org
www.needmeds.org
www.medicare.gov

Medicare's national program also helps people who pay for prescriptions with their government benefits. For details call 1-800-Medicare or visit www.medicare.gov.

A natural way to take care of your skin

Thanks to Jean for suggesting this!

 

Brown sugar mask

Brown sugar is a wonderful natural exfoliant that works for all skin types. I adapted this recipe from one suggested by Lena Korres, founder of Korres Natural Products, and makeup artist Jemima Kidd, in the July 2008 issue of Cosmopolitan. They recommend curing chapped lips by mixing brown sugar with honey and massaging into lips.

 

Ingredients:

·              1 tablespoon brown sugar

·              1 tsp (more or less, add drops if you need them) of olive oil or extra virgin coconut oil

 

Preparation:

Put the brown sugar in your palm

Add the olive or coconut oil

Stir in your palm with your finger, creating a paste.

Add or less as needed

Massage into skin in a circular motion.

Rinse off with warm water.

Press a warm washcloth into face.

 

  

NOW MOISTURIZE!

Moisturize. The final step is an egg white and yoghurt mask. First, apply moisturizer around the eyes and mouth. Whip one egg with plain organic yoghurt and apply to face. Let it dry for a few minutes. Rinse off with warm water and a splash of cold water to close pores.

Dealing with the stress of a chronic illness

While this article was directed toward CFS and fibromyalgia patients, all suggestions would also be appropriate for Dercum's patients.

RECOGNIZING AND MANAGING STRESS
Stress is created both in crisis situations and when people are under long-term pressure. Having a loved one struggling with long-term illness is a situation of long-term stress. Signs of stress include physical symptoms such as muscle tension, headaches and fatigue; problems getting restorative sleep; and emotional outbursts.

There are many ways that family and friends can respond to the stress created by CFS and FM, lessening both its intensity and effects. Here are five of them.

1. Relaxation

When we become stressed in the face of challenge, we often respond with a fight-or-flight reaction. Adrenaline flows, and we feel charged up. If the challenge is brief, the initial reaction is followed by relaxation. If, however, you feel yourself to be under constant pressure, as you may if you feel responsible for another's care, your body stays in a state of tension, which can manifest as muscle tension, headaches, fatigue, sleep problems and anxiety. By letting go, using relaxation, you counteract the effects of the fight-or-flight response.

There are many good relaxation and meditation tapes and programs available today. But other, less formal approaches can help, too. These include exercise, attentiveness to breathing, baths and hot tubs, massage, rest and listening to relaxation tapes.

2. Problem Solving

Taking practical steps to improve a situation has a double payoff. You reduce or eliminate a practical concern, and the process of taking action reduces anxiety and worry. Doing something counteracts the sense of helplessness, replacing it with a sense of control.

3. Positive Experiences

Doing things that are enjoyable is a stress reducer. Positive experiences lower frustration and counteract the sense that illness means only suffering. Here are five types of positive experiences, all of which can help lower stress.

Pleasurable Activities. Doing things that bring you pleasure can distract you from stress and reduce preoccupation with problems. Examples include seeing a movie, spending time in nature, listening to or playing music and reading.

Exercise and Movement. Exercise is a natural stress reducer, since it causes your body to produce endorphins and other soothing body chemicals. A similar effect can be obtained through other forms of movement.

Talking and Being Listened To. Talking to someone you trust provides reassurance and connectedness that dispel worry.

Music, the Arts and Other Absorbing Activities. Listening to or playing music or engaging in other artistic pursuits are good stress reducers. The same can be said of reading a good book or seeing an engrossing movie. The key is to find an activity in which you can become absorbed.

Laughter and Humor. Watching a funny movie or laughing with friends can be a great release. Like exercise, laughter promotes the production of endorphins. Research suggests that it can strengthen the immune system, counteract depression and even provide a substitute for aerobic exercise.

4. Mental Adjustments

Your thoughts can be another source of stress. For example, you may have unrealistic expectations. If you believe that you can protect the patient in your life from suffering, you may feel continually disappointed in yourself. If that's the case, you can reduce your stress by changing your expectations. Becoming aware of and changing the standards you have for yourself to make them more realistic reduces stress.


5. Support

Being around someone who has a long-term illness is inherently stressful and often isolating. Having people in your life who understand and respect you is a balm to the soul. Just being listened to and feeling connected to others is healing. Beyond that, talking to another person may help you clarify your situation, or the response you receive may enable you to see your life in a different, more constructive way.

Sources of support include family members, friends, clergy and therapists. Support also means practical assistance, which might include such things as volunteer or paid help with tasks such as shopping, cooking or housecleaning.

This is an excerpt from the article

Managing Stress and Feelings in Families Coping with ME/CFS & FM

ProHealth.com
by Dr. Bruce Campbell, PhD*
December 1, 2010

What to Do when Doctors Make You Feel Like a Hot Potato

This article appeared on prohealth.com on April 11, 2012

Q&A: How Do I Get Doctors to Listen and Stop Passing Me to Another Doctor?

Q: Have you had the experience of one doctor passing you off to another, and that one to another, and no one really wanting to ‘own’ you as a patient?

For a while I have felt I was the ball in a game of ping pong between my general practitioner and a specialist, each telling me to see the other. Currently, as new issues develop, I have become a “hot potato.”

My question is, what do you do to get doctors to listen and stop passing the buck? I am looking for suggestions beyond basics of talking to doctors. (One thing I am finding helpful lately is to pray earnestly and specifically for the appointment and the agenda to discuss with that doctor. I am at least finding each appointment a little less frustrating, and maybe a little more helpful.) - M

A: Lisa Copen - Hi, M. Yes, this can be very frustrating and I think most patients have felt this way at one time or another. My suggestions would be to try the following:

1. Call the local organizations for your illness and ask them if they have a list of recommended specialists. If they don’t, you may tell them:

“I know you cannot recommend anyone, but off the record, do you hear good things about a specific doctor whose name you could pass along to me? Do you know of anyone I could ask?”

Also, ask online friends in your area who have your same illness if they have some suggestions.

2. Ask others in the medical field who they would recommend, such as any surgeons you see, physical therapists, counselors, nutritionists, etc.

3. Consider if gender makes a difference to you. For over 10 years, both my specialist and general doctor were women. I would gladly see a male physician, and have, but overall, I need someone who will:

• Listen well,

• Multi-task,

• And not seem overwhelmed by side effects.

4. For a general practitioner, ask anyone you respect who has had any kind of medical condition if she or he would mind sharing the name of their physician. Since my diagnosis of rheumatoid arthritis, I’ve always had doctors of internal medicine as my general practitioners.

You may also want to ask around your church and see if there is anyone in the medical profession who may be able to give you the name of a recommended physician.

5. When you call for your first appointment, explain that you would like at least 30 minutes to explain your condition, and ask some questions about how the doctor prefers to work with patients who have a chronic condition, when a specialist is also involved.

There are doctors who love challenging patients and thrive on figuring out odd symptoms; other doctors do not, or do not have the time. Look for doctors who enjoy the challenge.

6. If the doctor you are interested in seeing has a web site, read as much as you can about him/her in advance. Also, Google his name and look on review sites such as Yelp (www.Yelp.com).

7. Ask your new doctor where they want to fall in the hierarchy of your medical team.

For instance, when I got a new rheumatologist last year, I asked him if he wanted me to come to him with symptoms that were obvious side effects of the medications (like basic infections, coughs, yeast infections, etc.), and he said yes.

8. Do your best as a patient to help the doctors communicate.

• When you have lab tests ordered by one doctor, have them fax results to other doctors.

• If you have an MRI or eye exam, etc. what other doctors on your medical team would find this information helpful?

9. Ask yourself if you want to try alternative treatments or may wish to in the future.

It’s best to not hide this from your specialist, so if it’s important to you, you need a doctor who will support your endeavors to treat yourself for certain things.

10. If you have either a general practitioner you like or a specialist, ask them for a referral to the other kind of doctor.

Whom do they like to work with? This can be very helpful if the doctors already have established a working relationship, and if you have a specific illness, doctors have a preference many times for other specialists who understand your disease.

For example, my rheumatologist likes to send me to an eye specialist who understands rheumatoid arthritis and how it affects the eyes.

11. Ask each doctor some specific questions and then go over the answers with the other one so there is clear communication. Such as:

• If I get a cold or sore throat, etc. which doctor should I see?

• If I have side effects that need treatment, should I go to the doctor who prescribed the medication or …?”

• If I have an emergency with ____, whom should I contact at 3 AM?

• If I have a _____ issue, would you prefer I go to the ER or Urgent Care?

• What information should I have with me when I go?

• Can the doctors there contact you?

12. When one doctor prescribes you medication, especially those which are pain killers, let the other doctor know so it never appears you are hoarding medications.

13. Be a “good patient.”

• There will be times when you must challenge a doctor’s opinion, but if you really like the doctor and wish to keep him or her, reasonably consider the doctor’s requests.

• If you frequently cancel appointments, arrive late, delay getting your lab tests done, etc. the doctor will be much less likely to help you or keep you as a patient.

14. Do your best to write down a list of things you wish to speak to the doctor about in order of priority.

Tell the doctor, “I have 4 questions today, so would it be okay, if I tell you what they are and then if we run out of time, you could call me back on the last one?”

15. Communicate your needs.

For example, if you often bring a caregiver, friend, or spouse with you, is the doctor comfortable with this?

16. Consider if this doctor is best for your needs now.

I have found that I needed a different rheumatologist for my thirties than I did in my twenties, and when I hit my forties it was also time to start looking around.

17. You mentioned prayer. Yes!

Finding, visiting, and keeping a doctor can all be very stressful. Ask friends to pray for you to be led to the right team of medical specialists to meet your needs.

Remember to send a thank you card to your doctors now and then or bring in a goodie unexpectedly. Before your appointment, pray for a sense of calmness, and yet also discernment and wisdom to know when to speak up.

* * * *

I have had a good medical team for some time now, but I’ve also had my share of doctors who have not particularly liked me.
At wound care, I had one doctor who casually said they would “just take a little piece of bone out of my ankle and. . . ”

At this point, I said, “With all due respect, I understand you are doing your job. But with rheumatoid arthritis that could disable my ankle for good. Dr. Y is my rheumatologist, and I won’t be having any procedures done until you run them past her, she approves them, and I have an opportunity to talk with her.”

He was not happy with me and did not like me questioning his authority. He especially didn’t like having to admit to me a few days later that he’d talk to my rhematologist and I would not be having the procedure.

On the flip side, I also left my son’s pediatrician and got a recommendation from a children’s therapist for another pediatrician.
In less than 30 minutes, the new pediatrician had us appointments at Children’s Hospital, a psychiatrist (who was ‘not accepting new patients’), and many more specialists who helped us solve a difficult case involving food therapy. We felt so relieved.

Last year my rheumatologist of 10-plus years was rather rude and I left the office in tears – a rare event.

I have found that many good doctors still have a “season” of being motivated to treat you. For me this seems to be 8 to 10 years. And despite a good relationship, I do expect to be treated with respect.

I found a new rheumatologist and am pleased with what he has been able to do for me, the medications he is willing to try, and his experience in using both Western medicine as well as herbs, etc. when possible.

_____

* Lisa Copen is the founder of Rest Ministries, which serves people who live with chronic illness or pain through daily devotionals, articles, and much more. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why at the Rest Ministries shop.

* *This article is reproduced with kind permission of RestMinistries.com, ©Rest Ministries, Inc. 2012. All Rights Reserved.

The Winter Warm Up

The winter is a tough time for many of us.  The cold wreaks havoc on our already riddled bodies which can lead to more pain and flare-ups of other symptoms.  So, since we all can’t afford a nice long vacation away from the weather, we need to find ways to get comfortable and keep warm through these cold months.  I would love to say it is as easy as turning up the dial on our thermostats but the rising costs of oil and just about everything else, may not make this the perfect option for everyone.

Here are just a few ideas to keep us all warm and comfortable:

·         Keep out the cold:  Try covering your bare floors with rugs and put up plastic and heavy drapes on any windows that are drafty. Draw blinds and curtains at night but reopen in the morning so the sunlight can get in.

·         Wear lots and lots of layers: Try fingerless gloves under mittens, wear hats and scarves even in doors if need be and, as many of you probably already have found, compression garments can be very warm and as an added bonus can help faulty lymphatic systems and keeps swelling down where needed.  I find wearing layers is great during those days that start out really cold and warm up in the afternoon and can be much less expensive than going out buying expensive coats and jackets.

·         Get cooking:  OK, I know not all of us have the time nor the energy to do this but how about throwing together some ingredients into a large pot and making a nice hot stew or soup.   Not only will you have a hot meal to eat and warm up your insides but just having the stove top on and/or having your oven running, your kitchen will warm up as well.

·         Make sure heat flow is not obstructive: Check all your radiators and heat vents to make sure that the air flow is not being blocked.  If a couch or another piece of furniture is blocking the heat flow, you are paying for heat that is not getting to you.

·          Try some heated slippers:  In my opinion, one of the greatest inventions in the last few years has to be heated slippers.  Who ever came up with this idea should be given a huge award.  Also try a heated neck wrap.  Not only do these items warm you up but they help ease some of the aches and pains that come with having DD or other related diseases. 

Hope these tips help you all.

Hope

Borrowed from facebook. Picture by Topher Kent.

Helpful information from FDRS

A friend pointed out to me that FDRS has some very helpful information on their Dercum's Disease page. Okay, I know - I so should have seen that sooner.....

It is a concise explanation of Dercum's with symptoms and treatments - a great resource to print off and give to your doctors or friends and family to help them understand. It's at
http://fatdisorders.org/what-are-fat-disorders/dercum%e2%80%99s-disease-adiposis-dolorosa/

A lot of it is on this site in one form or another. But they have put it all together in a nice format for you to use and I thank them for doing that!

DRL100 Pain Relief Gel is now in the store!

I'm really excited that we now have DRL100 pain relief gel in our store!

If you were at the FDRS conference in April, you heard Dr. Herbst mention that we did a small study using the gel. Results were very positive with all participants showing a decrease in pain level almost every time they used it.

DRL100 is all natural - another plus for us! And it smells like spearmint rather than menthol which is a plus for me!  :-)

It comes in 2 oz. and 4 oz. tubes. Prices are listed on the store page.

If you have any questions about it, feel free to email me at damuffett@aol.com