Sunday, April 24, 2011

A little bit about me.....

I have degenerative disk disease and 4 disks are effected—2 in lumbar/low back, 2 in cervical/upper back & neck. Required 2 back surgeries-1st in 1996 at age 24 when my right leg went completely numb (L5/S1), and 2nd in 2008 when left leg had pinched nerve (L4/L5). Left with neuropathy in both legs and feet which causes balance issues, weakness & falling sometimes. Due to doctor’s recommendation, I have not driven since 2006 and remained mostly homebound to prevent further injuries and keep pain level reasonable. Even though complete disability was recommended in 1996, I did not file for Social Security Disability until 2006 and was not approved until 38 months later in 2009.  After 9 years of endless typing as a paralegal, I also have carpel tunnel in both wrists and arms with moderate nerve damage in both. Occasional panic attacks helped to diagnose PTSD in 2009. My disabilities do NOT define me. They are my life’s challenges and I choose to be positive and thankful. That’s right-Thankful! Without my issues, I would work full time and only get nights and weekends with my husband & 2 children. Instead, I am here every day to make breakfast and eat with all of them. I am here when the kids come home from school, and love helping with homework & school projects.  I make dinner and cook as often as I am able. My husband and I share household chores and responsibilities. Due to my disability, my husband works out of our home and we get quality time together each day.  I have had the time to rediscover my love of writing and make daily connections through Pain Sufferers Speak’s community which is my passion! I love sharing FREE health/wellness information, doing webresearch 5 days a week, helping people to feel less alone in their pain, and encouraging others to share their pain in a healthy way. I feel truly blessed and excited about the future!

Tuesday, April 19, 2011

Where do I post RECIPES & Quick "Painy Day" meal ideas?

Do you have RECIPES you are willing to share? Awesome! Follow the link to find all the Recipes that have already been posted on the facebook Community Fan Page. Get "Painy Day"meal ideas & suggestions, drop off a favorite recipe of yours & enjoy yummy stuff from all over the world!

Monday, April 18, 2011

My Philosophy

Please Remember:

My philosophy is that our community provides FREE INFO to everyone, and each of you decides for yourselves (along with your healthcare providers and family) what is best for you and your unique circumstances. ANY POST on Twitter or Facebook is NEVER strategically placed, nor should it be considered to have my endorsement, approval or implied consent in any way. 

****If you want my opinion, all you have to do is ask for it. Never been shy. : ) 

****Can you tell I was a paralegal for 9 years? Geesh! I know you understand why it had to be said. : )

Love to all my Spoonie and Painsomniac Peeps Everywhere PLUS all the Pain Brothers and Pain Sisters Worldwide!

Liz : )

Saturday, April 16, 2011

Pain Diary & Journaling

I have encouraged you all to come here to the facebook group or page each day and "deposit" or "give away" your pain, frustrations, hurts, anxieties, fears, worries, anything negative or toxic, etc. Your diary can be started on the discussion board as a new topic on either the facebook group or page. Its been proven over and over to me that the best course of action, is leading by example. So I began my own diary called Liz's Daily Diary in Aug 2010. Start your own diary and name it whatever you wish. Come back anytime you want and see what others have added to your thread and be sure to journal daily, weekly, monthly or as often as necessary to feel free to face your life with a clean slate and positive attitude. For those of you that live with chronic pain, encourage your family members to also use this outlet. Everyone in your family can start their own diary, too. If your kids have a FB, encourage them to vent into their very own diary. My kids helped me come up with this diary concept. It helped them through when I was on bedrest with constant pain. My youngest would rush to my bedside immediately after waking up, and tell me all his "yucky stuff that made him sad" and then we could go on with our day. His excitement in "giving away the yuck" was inspirational to me and I hope for you, too. Come on.... you don't need that stuff weighing you down so "give it away" in your diary right now. You will be surprised at how much better and lighter you will feel. Happy Journaling!!!

Update #2, Originally Posted in August 2010, Updated 4/18/11
Update 6/28/11
Link to Liz's Daily Diary!/topic.php?uid=142242355793657&topic=304

My Diary was started in the original groups' format on the facebook group.  When we were forced to convert to the new groups' format in all of facebook's wisdom, they eliminated the group discussion board. cannot see Liz's Daily Diary on the community fan page (in case you were interested & FYI)  

Speaking of Pain

Hope this update finds you positive and ready to face your life's challenges one by one. Remember its not complaining to speak about your journey with pain--Instead view it as an opportunity to help someone else through what may be the hardest thing they have ever faced in their lifetime--Pain, sufferering, illness, isolation, depression, worry, fear, etc. All humans experience and have to deal with pain. Our bodies manifest our pain as stress which causes the same chemical response in everyone from babies to senior citzens. We encourage our children to tell someone why they are sorry and communicate their physical symptoms to us. As adults, we receive unhealthy encouragement to suppress, hide, and be silent about our pains and complaints. Its a scientific fact that sharing and communicating about anything negative in your life is the best thing for you and your body. Its surprising how many of us are willing to post our complaints on our facebook wall, but we won't discuss them openly with friends and family even when we feel safe to do so. Pain Sufferers Speak was started to help others through sharing. Sharing your story, your links, your opinions, and your knowledge with the group is the only way we can develop and grow together as a community. Its my passion to connect people so that we can bolster each other in an abundantly forgiving and safe environment. No one will critcise you or judge you, because that will get them band from the group permanently. So feel free to say what you think and feel, share your stories, advice, what works for you, what doesn't work for you, what excercises or diet has helped you, etc. The more we give to our community the better we all will be served by it. The Showcases (available on the group only) are each specific to a particular condition, disease, syndrome, or other topic for discussion. I designed it this way so we have a collective knowledge base organized by topic. One stop shopping... if you will. Introduce yourself, tell what you feel comfortable with about your story, and see what responses you get. I am looking forward to reading your posts, continuing to do webresearch daily, answering questions or finding someone for you that can answer your questions, and generally enjoying our unique community filled with people who get it and aren't afraid to speak about the commonly dreaded subject of pain. Its normal to feel all alone in your pain, because truly the only way for someone else to completely understand how you feel is for that person to be INSIDE your body at the precise moment of your pain. However, if you can find someone else that has your condition, your symptoms, your diagnosis....than they get where you are coming from. Through shared experiences we can help each other cope with the hard stuff life throws at all of us. It is my wish that these connections happen for you on Pain Sufferers Speak. If you have a suggestion for a Showcase, send me a message or suggest it on the wall of the group or community fan page. In order to experience the maximum benefits of our community, Join the facebook group & community fan page, follow this blog, and follow us on Twitter as @painspeaks. Talk to you soon and have a wonderful Friday and weekend!!

Liz : )

"Honor A Veteran", "Memory Wall" & "Wall of Pain"

So Happy to Announce 3 New Facebook Community Page Additions--

 "Honor A Veteran", "Memory Wall" and our community's own "Wall of Pain"!!

In honor of Veterans' Day, I am so pleased to share a group member's awesome idea to have a place where family and friends can honor their loved ones who serve in the military. Feel free to post the name, rank, number of years in service, and military branch of anyone you would like to HONOR. Share as little or as much information as you want. Thank you to all the brave men and women who serve in our military. Your sacrifices and selfless courage will never be taken for granted or forgotten. We support you ALWAYS!!

Link to "Honor A Veteran"!/topic.php?uid=142242355793657&topic=553

Next is our group's very own "Memory Wall". Feel free to share the names of your friends or family members that have passed on or died. Remember there is no judgment here so you are safe to say whatever you need or want to say. For example: how the loss has effected you and your family; share stories or funny sayings or quotes; share what you might say to the person you have lost if you had one more hour, or one more day with them. Pain of loss is very REAL.

Link to our "Memory Wall"!/topic.php?uid=142242355793657&topic=552

Share your story or journey with pain. It can be as long or as short as you want. Remember its not complaining to tell your story. The communication of pain is healthy for your body, mind, and spirit. I believe its necessary for wellness if you deal with any type of chronic pain or illness or combination of both. Here is your opportunity to tell YOUR STORY...YOUR WAY with no judgment or criticism. Pain Sufferers Speak's Global community is based on being a safe place for you to communicate your pain in any way that works and feels right for you.

Link to our "Wall of Pain"

Remember to speak openly about your pain. Its not complaining!! The healthiest way to deal with any type of pain is to share it with someone else. You will feel lighter, and you just might find someone else who completely understands what you are going through. Its wonderful to see our group making connections everyday. Keep posting!!

Have a meaningful week!!

Liz : )

Update Archive under #12 originally posted 11/13/10
Update 6/28/11

Stroke Warning Signs

Did you know: More women than men die from strokes?


FACE: Ask the person to smile. Does one side of the face droop?

ARMS: Ask the person to raise both arms. Does one arm drift downward?

SPEECH: Ask the person to repeat a simple sentence. Are the words slurred? Can he/she repeat the sentence correctly?

TIME: If the person shows any of these symptoms, time is important.

Common stroke symptoms seen in both men and women:

Sudden numbness or weakness of face, arm or leg, especially on one side of the body;

Sudden confusion, trouble speaking or understanding;

Sudden trouble seeing in one or both eyes;

Sudden trouble walking dizziness, loss of balance or coordination;

Sudden severe headache with no known cause;

Women may report other unique stroke symptoms’: Sudden face and limb pain, sudden hiccups, sudden nausea, sudden general weakness, sudden chest pain, sudden shortness of breath and sudden palpitations.

A STROKE IS AN EMERGENCY! Get help and get to the hospital. The chance that you will survive and recover from a stroke is higher if you get emergency treatment right away.

Source: American Heart and American Stroke Association

Submitted by Group & Community Page Member, Pamela Perry

Heart Attack Warning Signs

Did you know: Women are less likely to survive heart attacks than men?


Most of us think there will be no doubt when we are experiencing a heart attack event. We believe the pain and discomfort will be sudden and intense. However, most heart attacks start slowly with mild pain or discomfort.

Here are some signs that we should quickly acknowledge:

Chest discomfort: It can feel like uncomfortable pressure, squeezing fullness or pain. It is discomfort in the center of the chest that lasts more than a few minutes or that goes away and comes back.

Discomfort in other areas of the upper body: There can be pain or discomfort in one or both arms, the back, neck, jaw, or stomach.

Shortness of breath: This can occur with or without chest discomfort.

Feeling faint, woozy or lightheaded:

Breaking out in a cold sweat:

Nausea, feeling sick to your stomach or vomiting:

Women are more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting, and back or jaw pain. Women are also more likely to have less common signs of a heart attack like: heartburn, loss of appetite, feeling tired or weak, coughing, or heart flutter.

If you think you or someone else may be having a heart attack, don’t wait, call 911! Minutes matter!

Source: American Heart Association

Submitted by group member Pamela Perry

Pain Is Universal

Pain is universal!! Whether its pain of loss, physical pain, emotional pain, spiritual pain--no matter what kind or how it manifests--pain is the same. This may not be exact, but, if you close your eyes, and take yourself to a place where you completely feel everything in and about your life that hurts--that's the place where you get the main ideas of pain. You can't get away from your hurt(s) and all coping mechanisms of all kinds don't fix it. You understand insanity cause you think you aren't far from it right now or some time in your past. Pain is isolating and you feel all alone. Pushing people away and avoiding the public, is a normal human response to chronic pain. Imagine this: Its the middle of the night. You may or may not be alone in your home, but, either way, you are the only one awake. Our kids who love us unconditionally, and can be our greatest cheerleaders, but they are asleep and you would never wake them to share pain. Husbands/Wives/Spouses from the best (most supportive) to the worst, are asleep cause they have to work tomorrow or do whatever it is they do. You are alone with your pain. Alone, Isolated, Desolate, Desperate......This IS PAIN and, if you have felt its grip, than you get it. I used to share a Facebook (FB) account with my husband, Jason, and we have many friends. All alone in the middle of the night, I was/am still alone with my pain. It doesn't matter how many friends you have on FB, MySpace, Twitter, email contacts, etc. In pain, eventually we all notice at some point that we are alone with our hurt(s). This is a place to springboard from positively or negatively through conscious choice no matter whether we are children or adults in pain. Choose wisely, my friends!! Our attitudes about our pain, our life, our family, our doctors, etc, affect everything we do and say. I choose to be thankful. That's right---thankful!! My pain has brought me many blessings. I will further discuss those in future posts. Guilt is a common side affect of pain. The person in pain feels guilty about how their pain affects others in their life--friends and/or family. I believe there is a lot of guilt on both sides of pain. The friends or family watching their loved one in pain, feel guilty asking anything of the one in pain even if they should ask in the example of the Father/child or Mother/child relationship. My kids have told me over and over that they leave things out or don't tell me things at all, cause they don't want to increase my pain. Jason has told me the same thing more than once. I don't want to be out of the loop, and no one does, but its a side affect of pain that few ever discuss. It is with this in mind, that I created this group to provide a place for the open discussion of all types of pain. Living with pain--no matter what kind--seems to have the same side affects on us all. Through sharing, I hope that others will feel not so alone. Post on the wall, start your own discussion, upload pictures and videos related to pain, and generally support each other through the toughest thing that life can send us-- PAIN. I hope by finding common ground, we can all face life with a brighter future. I will post again soon, and promise not to ignore or delete anything posted by any of you unless it hurts some one else. Feel free to complain, rant, discuss, argue, compliment, support, help, or communicate in any way that helps you. You will be pleasantly surprised at how many people GET where you are coming from. Welcome to Pain Sufferers Speak!!! Liz : )

Benefits of the Pain Sufferers Speak Facebook Group

The FACEBOOK GROUP benefits:

1) Over 265 links to informative articles and websites

2) 42 Showcase topics--MS/Multiple Sclerosis; Fibromyalgia; Asthma; AIDS/HIV; Living With Chronic Pain; Arthritis; Osteoporosis; Kidney Stones; All Types of Cancer; Lupus; Autism; Parkinson's Disease; Massage, Bodywork, and All Types of Somatic "of the body" Therapies; All Types of Migraines and Headaches; TRAPS/"Familial Hibernian Fever"/"Tumour Necrosis Factor alpha Receptor Associated Periodic Syndrome; Diet and Nutrition; Grief and Pain of Loss; Complex Regional Pain Syndrome (CRPS); Degenerative Disk Disease; Depression; Bi-Polar Disorder; COPD/Chronic Obstructive Pulmonary Disease; PTSD/Post Traumatic Stress Disorder; Diabetes; Hyperglycemia; Hypoglycemia; Addiction; Lyme Disease; Myalgic Encephalomyelitis/M.E.; Chronic Fatigue Syndrome/CFS; Abdominal Wall Endometriosis/Endometrioma/Incisional Endometriosis; Epilepsy; Lichen Planus; Dystonia Disease;  All Types of Cervical Dystonia/CD; Fetal Alcohol Spectrum Disorders/FASD; Ankylosing Spondylitis/AS;
Sj√∂gren’s syndrome; Sponsylosis; Schizophrenia; All Types of Psoriasis; Muscular Dystrophy/MD; and Cystic Fibrosis/CF.


3) Existing Pain Diaries--This can help give you some ideas about starting your own pain diary. Your Pain Diary can be set up on the GROUP OR PAGE. Your choice.

Use your pain diary as a safe place for you to drop off all your negativity each day. Then you are free to face your life and your challenges feeling lighter and more positive. You might choose to make your diary like a journal and post your daily life. Make your pain diary what you need and want. Anything that can help you express your pain in a comfortable way, works for you and is healthy.
I believe in leading by example.  Here is the link to my unabridged Pain Diary called Liz's Daily Diary. Never been shy and happy to answer any questions.!/topic.php?uid=142242355793657&topic=304

4) Pain Sufferers Speaks is ALL about "Pain Connections" and sharing information. Introduce yourself on any Showcase and tell your story or whatever info you want others to know about you. Than others can find you. Meeting someone that shares your condition(s) or your symptoms, will help to fight the natural tendency we all have to isolate ourselves while we are in pain.

If you feel more comfortable, post on the wall of the GROUP or PAGE or chat with me on TWITTER. If this is not the right time to come forward, than wait. You can enjoy all that Pain Sufferers Speak has to offer without saying a single word. Look around and post comments, opinions, upload a photo or link, start a pain diary, read another person's diary or story, upload a video, set up a private chat with a friend (request the login info anytime), set up an event and invite anyone you wish, and more. It is my wish that "connections" happen for you on Pain Sufferers Speak GROUP and PAGE and TWITTER and that you have access to LOADS of organized health information on any topic you suggest for FREE.

Contact me ANYTIME with ANY SUGGESTIONS!! Your suggestions make our community better!!! I can take CRITICISM, too. So no worries either way.

Enjoy Pain Sufferers Speak Global Community!!

Liz : )