Share and Make Aware

Holiday Greetings and Health

Sunday, 20 December 2009 07:40 Flora Langel DeKock

I know the holidays are coming up and many people visit family for the holidays. During these great festive events we tend to eat.. And sometimes a a lot. I just want to caution us all that battle RSD that with this excruciating pain, we all know our activity levels drop. With this it causes us to use less calories. Its something we all know, but sometimes we do forget as time goes by or as the pain takes our memory.

But for a little reminder with the holidays upon us, I wanted to offer you some information I knowledge my mother found, which she refers to her "RSD Bible." It is an online publication of the findings by one of the earliest specialists of RSD, H. Hooshmand, M.D., who just retired his practice in the last couple years. Dr. Hooshmand advises there are four F's to try to keep in your diets,

Fresh Fruit - not canned.
Fresh vegetables - Olive oil is the best cooking oil.
Fish - baked or broiled. Use fresh lemon juice for flavor. Avoid the use of margarine.
Fowl - skinned! Not fried - baked, roasted or grilled is fine. When you are in a hurry, try wrapping a boneless breast with vegetables (i.e., onions and bell peppers) in aluminum foil and baking - it is quick and easy.

Now this is great, as some people already love these particular options for diet.

Unfortunately in documenting what we can and should eat, I should also include the lists of "no nos."

Avoid the five C’s: cookies, cake, chocolate, cocktails, and candy.

Foods to be avoided.

Crystalline sugar	Cakes
Soft drinks with sugar	Sweet-rolls
Pies	Lard
Bologna	Crisco and other shortenings (replace with olive oil)
Salami	Potato chips
Hot dogs	Dips
Sherbert	Cake mixes
Ice cream	Alcohol
Enriched white flour (bleached flour)	Nondairy cram substitutes
Syrups	Margarine
Mayonnaise	Donuts
White bread	Butter
All fried foods	Bacon and any pork
Canned fruits packed in syrup	Candies

Now there are some foods that are OK, as long as in sparse amounts. As that his page goes into a great deal of explanation, I think what I'll do is actually reference his page here so that you yourself can read over what he advises and why.

http://www.rsdrx.com/four_f's_diet.htm

And as always I, as a representative of this site, make this advise in no way, nor does our site in any way, pretend to be in doctors, nurses, or any other type of medical professionals. The material should not be used to replace your current medical course-of-treatment, but rather should be used in conjunction with your care-givers to help improve your quality of life. Additionally, you should never make changes to your diet, treatment plan, or exercise regimin without consulting your physician.

HAVE A HAPPY HOLIDAY EVERYONE!

Last Updated on Sunday, 20 December 2009 07:58

Broadcast & Chat FAQ

Monday, 01 June 2009 20:55 Flora Langel DeKock

General chat discussions will be based on the topic upon the chat listed. We ask that everyone respect everyone else and try to be positive during discussions. Sometimes negativity, when directed at a certain issue, may be misunderstood as directed at an individual and cause unwanted concern or negativity in others. Pain is what we all know, and we hate hurting others as much as we hate hurting ourselves.

Now, should you want to have a private chat with someone, you can make this option a reality by left clicking their name in the chat side bar. Then select the PRIVATE CHAT option. Again, try to remember to be polite and civil, because anything inappropriate or possibly considered profane will get you a temporary or perament ban from accessing the site. NO ONE should receive this punishment, so please be courteous to your fellow sufferers.

Also, a side note, you can create your own temporary rooms by typing the following:

/join "room" (without the quotations marks).

This creates a side chat room with the name you have chosen.

If you would like to tell someone about it and don't know if they have seen the chat overview, make sure to place a SPACE before the / symbol and then it should post as normal text in the chat screen.

These broadcasts will occur on scheduled times listed on the "Upcoming Events" to the left, which areset in MOUNTAIN STANDARD TIME (-7). If requested, we may change these times to accommodate those in foreign regions as well.

Our broadcast requires Adobe Flash to be installed, which you can download here for free. Unfortunately, there is a known issue with the broadcast display which will pop up constantly unless you select DISMISS ALL. It is not something I can fix, as it is a problem with the flash player itself. Until Adobe can correct it, just select DISMISS ALL and it should display fine.

Last Updated on Monday, 01 June 2009 21:50

Why I wanted to start SAMA

Tuesday, 28 April 2009 17:39 Jen'a Fotheringham

I went through a dark time when I brought out all my anger out on everyone. I had a constant battle in my mind where I would hate everything and everyone because of what I was going through. I hated my self for becoming someone I loathed, someone who gives up hope and is deeply depressed because of it. I hated my body for giving me an incurable disease. Before I got injured I was a really strong person in my faith. I was a good person, loving, fun to be around, funny, and an exuberant human being.

Awareness is one of my top priorities right now, and in with sharing comes awareness to others. For a while I thought I was the only one going through an excruciating pain that no one understood. It came to a point where I was at my lowest, where nothing could uplift me. Talking to others and hearing their stories I have realized I am not alone. This is one thing that has helped my mind on its way to recovery.

To me I had to realize that there are people who are fighting this disease right along beside me, that they know exactly what I’m going through. I am not abandoned. Getting mad at myself and everyone like I always did just made me more miserable. Stay strong... always look for the good in things, even how little they may seem. Talking and sharing with others is not only beneficial to others, but by bringing more awareness to others maybe we can find a cure together. I'm trying to fight as hard as I can, and not just for my own sake, but for the ones that love and care about me.

Jen'a

Share and Make Aware (SAMA)

Wednesday, 13 May 2009 20:20 Webmaster

CRPS/RSD Awareness & Support Group

Share and Make Aware (SAMA) is a place where you can relieve some of your stress, ask questions, get advice, give advice, communicate concerns, warnings, laugh, cry, broaden your mind, share, listen, make aware, find relief, and hopefully find some answers. SAMA will have monthly support meetings, and support meetings broadcasted to suppliment for those who don't have support groups near them or those with the inability to get out and about.

Becoming a member of SAMA is completely free, and you will have the ability to communicate and share your stories through the broadcast chat, forum board, and Wiki. You will have to register to participate but this is free and supported by any donations recieved.

Reflex Sympathetic Dystrophy Syndrome, RSDS, is now referred to as Complex Regional Pain Syndrome, CRPS type I. Type II is called Causalgia. (see chart below) The only difference between the two types is the form of triggering event.

CRPS is a progressive disease of the Autonomic Nervous System whose pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body.

CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index.

McGill Pain Index

There are FOUR Main Symptoms/Criteria of CRPS:

1) Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration)
2) Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.)
3) Spasms-in blood vessels and muscles of the extremities
4) Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)

MEDICAL DISCLAIMER

Who SAMA is not: The Share and Make Aware organization is in no way nor does it in any way pretend to be in any way doctors, nurses, or any other type of medical professionals. The material should not be used to replace your current medical course-of-treatment, but rather should be used in conjunction with your care-givers to help improve your quality of life. If you have questions that are not addressed in the following material, feel free to email us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it . Additionally, you should never make changes to your diet, treatment plan, or exercise regimin without consulting your physician.

Last Updated on Wednesday, 10 June 2009 14:39

Never in my wildest dreams

Tuesday, 28 April 2009 17:14 Patty Lynn Fotheringham

My daughter Jen’a was diagnosed with CRPS in August 2008. I never in my wildest dreams thought I would have a daughter who would be ill. Let alone an illness that was rare and has no cure!!! Having a daughter who is sick teaches you tolerance and patience. Learning coping skills and being an advocate for my daughter is a priority at this point. Having compassion for those who are in the same or worse circumstances than we are having is also important.

My hope right now is that she can have the energy and will to get though daily life. To show her beautiful personality and to spread the happiness she brings into are family, and to have the motivation to help others, and continue her education.

My sadness comes when her friendships’ end because of ignorance, and when I see my daughter hurting because she can't complete a task that she so desperately wants to accomplish. For insurance companies and medical costs that are so ridiculously high that everyone has trouble to pay. This makes me cry.

Now I can only pray for doctors to become educated and research to come available to help my daughter as well as the many sufferers of a disease that is so horrible. CRPS!

Last Updated on Wednesday, 29 April 2009 23:47