Saturday, August 30, 2008

Calling All Fibro Heroes!! Speak Up and Be Heard!!

Hello Everyone,

Yesterday I had an interesting situation come across my path and I want to tell you about it in order to encourage all of you to speak up and be heard.

I had a mortgage lender ask the following question of me: "If you are unable to work a "mainstream" job, then how can you walk up and down the stairs in your home?"

WHAT ?????!!!!!

I felt lead to write the lender a letter regarding their question. I expressed my confusion regarding how being able to walk up a stairway qualifies a person to be able to work a "mainstream" career. There are many, many people who can walk a flight of stairs and are definitely disabled in other capacities! Since when does being able to accomplish a flight of stairs become a qualifying factor in disproving a disability????

First of all, asking how I (or you) manage my (or your) physical limitations is a personal question and really a matter of whether or not I (or you) feel comfortable sharing it with any person. It's intrusive and bully"ish "to be frank about it. It has nothing to do with establishing a medical history such as the 3 year documentation I provided to this lender to include my doctor's name and contact information, my insurance claims, all of the documented doctor and hospital visits I've had before being diagnosed correctly, and the medications I currently have prescribed to me. These are documented and show a medical history. How I (or you) choose to process and manage my (or your) symptoms has nothing to do with "proving" an incapacity to maintain a "mainstream" career.

Because of the extremely good customer service that our loan officers have given to our family, I chose to go ahead and describe how I manage my "stair situation". My goal in doing so was to educate the lender so that in the future, should they encounter another person living with Fibromyalgia and/or Allodynia, they have a better understanding of the syndrome(s) and its effects.

I'm also choosing to share this with you, my readers, because talking about how we "deal" is very important. We need to talk about it and legitimize one another so that as a united front we can make a difference in how we are treated in society.

The fact of the matter is that there are times I must use a cane to walk up and down my stairs, times when I sleep on our couch because I'm too weak to manage the stairs, times when my husband is on orders (he serves our country in the United States Military) and away from home, that I have our littlest girl sleep downstairs with me so that I can make sure I am able to care for her during the night if she needs me, and there are times when I "cat walk" up our stairs using my hands and feet to get me up there.

This is the truth of Fibromyalgia/Allodynia for me. This is how it impacts me regarding just the stairs. I expressed to the lender that the stairs are only one part of my world that I must take control of and manage. There are so many other situations and factors along with dealing with stairs that frankly are more important and worth much more attention. I also expressed the frustration that people living with Fibromyalgia and/or Allodynia face because it can't been "seen" and we often have to jump through hoops in order to "prove" we are ill and need help.

Ladies and Gentlemen, Fibro Heroes, WE HAVE TO SPEAK UP AND BE HEARD! It's a very real fact that much of society, and dare I say even the medical community, who are uneducated and have erroneous mindsets about the symptoms and physical limitations of a person living with Fibromyalgia and/or Allodynia. WE MUST EDUCATE THE COMMUNITY in order to link arms and promote Fibromyalgia and/or Allodynia awareness and education! I cannot emphasize the importance of making sure that you are a voice and a potential hero for the Fibro and/or Allodynia community. YOU CAN MAKE A DIFFERENCE!

Until we find a cure I want to encourage you to take part in putting Fibromyalgia and/or Allodynia "in the face" of society. Wear or display an awareness ribbon, talk about your symptoms and pain management, fight for your quality of life, participate in fundraising events or awareness events, write a book or a blog about your experiences, be a voice regarding the difficulty in qualifying for disability benefits, demand (politely but firmly) the same rights and respect that other disabilities are shown in the mainstream workforce community and offices, read up on current issues regarding the syndromes and don't shy away from those who are sceptical that you are really fighting an illness. The more silent we are, the less chance we have of creating a momentum toward finding help and a cure.

Together we CAN make a difference! As long as we are living with Fibro and/or Allodynia we might as well DO something productive about it and take ownership of it. Why not? There are countless other awareness es that are not shy about raising awareness and asking for help, and neither should we be shy about OUR syndrome and the reality of the devastation it causes.

Fibromyalgia and/or Allodynia effects each person differently. One person may be completely bed-ridden for the most part, and one person may be able to function well enough to maintain a mainstream career. It just depends on each person's body. These facts deserve to be legitimized rather than be a reason to promote skepticism that it's "all in our head" or that we are not truely ill. No, we MUST raise awareness and education about what it's REALLY like to live with Fibro and/or Allodynia.

Speaking of what it's REALLY like, .... the commercials for Lyrica come to mind. Now there may be many, many people who are able to function in a much more capable capacity such as what is shown in these commercials and THAT'S GOOD. It's VERY good. That's what we want. However, the commercials only show women with Fibro and they don't give enough attention to the extreme symptoms that many others living with Fibro experience. AND.... what about the MALE population who live with Fibro and/or Allodynia?????? It's NOT good that often times fibro awareness tends to lean toward the female community just because there are reports that more females than males live with the syndrome. No it's NOT good at all. Men deserve to have the same support and the same dedication to awareness and help that females get. I very often find that the male population of Fibro sufferers is silent and don't talk about it very much. We MUST make a comfortable and accepting environment within our groups to accommodate the very real and unique experiences that men go through while living with Fibro.

So today I'm calling on everyone to look for opportunities to educate those around you that you have influence with and create awareness within your community. Let's work together to legitimize one another and become a cohesive force willing to speak out and find ways to fund or contribute to finding a cure.

I'm right there with you...and I care very much about the Fibro/Allodynia communities.

Here's to your success!

Wednesday, August 27, 2008

A Word About "Flow"

Hi Everyone,

I’m delving into the books I wrote about in my last post and I will be posting updates for you as I go along.

In the mean time I wanted to address an issue that came up for me this week with a young woman who I’m coaching at the moment.

What do I mean by “Flow”? I mean a cohesive path toward one direction.

For each person, there comes a time in life when you’re piecing together what your specific passions are and what unique talents, skills, assets, and points of view you want to express and use both personally and professionally.

When I’m coaching a person who is looking for ways to accomplish their career goals, I pay close attention to what they are doing to move themselves forward toward their goals. For instance, if a person’s passion and dreams are to be a nurse then it’s my belief that to move themselves toward that goal, they should frame their life choices around meeting that goal.

Here’s what I mean:

1) Choose a job that relates to the ultimate goal until you are able to reach the goal.

For example: If I’m coaching a young person who has nursing as their ultimate goal, then I often recommend that while attending school, if you have to work a job as well, choose a job that will give you skills you can use later in nursing. Perhaps working in a nursing home, a special needs unit, or even as a receptionist or assistant at a doctor’s office for the time being. All of those positions offer a treasure trove of experiences that can be carried with you into your future position as a nurse. An added bonus is being able to list those occupations on your resume to help you compete for the ultimate position you want later on. It shows a “flow” and a cohesive path toward the future goal. It shows perseverance, innovation, and drive.

2) Search for outside ways to give you information and further skills you can use later on.

For example: Hobbies might include things that have a theme corresponding to what your ultimate goal is. Volunteer work may be something to look into. Read, read, read, read! Keep up to date on your chosen career goal and give yourself a leg up on the competition by being able to converse intelligently about the new things going on for people in your chosen field. What are the “movers and shakers” looking for? What can you add? What original points of view and talents can you bring to the table? You have VALUE! There is NO ONE else like YOU. Celebrate yourself and show what you can do!

3) Take time out….

Make sure you have things in your life that are completely unrelated to your chosen career goal. Have fun, invest yourself in your relationships, and create a space that’s all your own. Each of us needs that in order to gain strength and have peace within so that we can be our best selves.

These are some of the things I mean by “Flow”. Take some time this week to take a look at your life and see if you can find “flow”. If you can’t …that’s OK. It’s never too late to fix it. All it takes is a decision to make changes so that you can achieve your goals.

It doesn’t matter whether you are working for yourself in your own business, or whether you are adding your unique gifts to a corporation. It’s worth it to take a look and see if your life is moving in “flow” toward what you and ONLY you can gift this world with. Each person is a unique and priceless treasure that cannot be duplicated. Celebrate YOU!

Here’s to your success!

Sunday, August 17, 2008

News to Ponder and Investigate

Hello Everyone,

You may need to bear with me for a few moments while I jot down some thoughts that may seem difficult to piece together at first. Something I love about thought is the path along which we travel in order to ask first the question, then discover more questions to be asked. Hopefully at some point an answer will be found and that is the passion of loving thought in the first place for me.

I want to share with you a decision I've made regarding looking further into ways to either manage fibro/allodynia pain, or reverse it all together. It's important to me to keep talking to you so that together we can lock arms and fight for our quality of life. Each of us plays a vital role in determining what our outcome will be. I meet people all over who inspire me to go further, reach higher and question deeper and then come back here to write it all down for my readers. Each person with body pain has something vital to contribute whether through experience, answers, or support.

Please bear with me while I explain how I reached the decision I made and what I'm going to keep you updated on as I go along.

In his book "Saint" Ted Dekker's main character is an assassin who has been trained using highly controversial and secret methods in order to become the best of the best. As part of his training the character learns to control his body and body functions in a much more focused way than most of us have learned to do in normal every day life. This character was able to lower or elevate his heart beat at will, control the need to remove waste, control brain function... and so forth. While I was reading the book, (other than the fact that I LOVE TED DEKKER books! lol!) I was struck with a thought that propelled me toward questions and more questions about what and how much is possible for Fibro/Allodynia sufferers to control using the power of the brain. (As a note: I'm not referring to hypnosis here) Is it possible? Are there any cases where people have done it? Have there been people cured?

The next piece of my thought pattern was brought forward because of Scripture. Being a woman of faith, Scripture is vital to me. The Scripture teaches in several places the relationship between negative emotions, thoughts, and attitudes leading to poor health. It also teaches that negative words can bring disastrous results to a human body. These show a clear relationship between what is received as negative to the mind manifesting through the physical body.

The next piece of my thought pattern developed while searching for information on whether anyone has claimed they've found a cure for Fibromyalgia. Let me just say first of all that I was very surprised that there are several people who HAVE claimed to have found a cure for the symptoms of Fibromyalgia. Why aren't we hearing more about them?????????? So of course my next step was to find out what they had to say.

Okay, the first thing I found was lots and lots of herbal remedies and exercise techniques and I firmly believe both of these are helpful and important for ANY person seeking good health. Vitamins and nutrients along with exercise are just plain vital to the human being. Period. In fact one book that I purchased today is "Reversing Fibromyalgia - The Whole-Health Approach to Overcoming Fibromyalgia Through Nutrition, Exercise, Supplements, and Other Lifestyle Factors" by Dr. Joe M. Elrod

The next thing I found was purely on accident. I was looking up a program on reversing fibromyalgia, when I came across a link for a book called "Freedom from Fibromyalgia" by Nancy Selfridge and Franklynn Peterson. I casually read over the book contents only to find a surprising revelation that tied all of the other pieces of my thought patterns (that I described above) together! I also learned about another book by John Sarno, M.D. called "Mind Over Back Pain" that lead me down another road altogether.

OK, so where am I going with all of this????

1) I'm curious to know if the brain can be used to manage and/or reverse body pain from Fibromyalgia and/or Allodynia (Again, I'm not referring to hypnosis)

2) Has anyone claimed to be cured of their symptoms by using the brain?

3) If monks, martial artists, and military personnel have used the brain to regulate body function why can't we? How do I learn it?

4) Where do I find reliable, trustworthy information so I can begin learning the answers to my questions?

After several hours of reading and researching I found three books that I purchased today. All claim to have information on using the brain (understanding the brain's role) in overcoming pain and illness. I decided that I'm going to find out if what they are teaching works, has merit, and is something I would recommend to you. As I read them and delve into finding out the answers to my questions I will share what I find out so that you can decide if you'd like to find out too. (I'm also going to look into two other books by John E. Sarno called "The Mindbody Prescription" and "The Divided Mind")

Here are the books and their authors:

1) "Reversing Fibromyalgia - The Whole-Health Approach to Overcoming Fibromyalgia Through Nutrition, Exercise, Supplements, and Other Lifestyle Factors" by Dr. Joe M. Elrod

2) "Freedom from Fibromyalgia" by Nancy Selfridge and Franklynn Peterson

3) "Mind Over Back Pain" by John E. Sarno, M.D.

(As an interesting side note: ABC News's John Stossel wrote an excerpt in his book "Give Me a Break" regarding John Sarno that was highly positive. You can read it at using the "search inside" feature and look under page 229. Or you can look up "John E. Sarno" in the search field at Amazon and it will eventually show John Stossel's book because of the excerpt in his book on Dr. Sarno.)

Here's to your success!

Saturday, August 16, 2008

The Sorrow of Fibro

Hello Everyone,

I'm writing to you today possibly more to vent than anything else I must confess. I'm in the middle of a Fibro/Allodynia flair and this is the second strong one in two weeks. I haven't slept well for tossing and turning and the frustration is just unbelievable. I know you know what I mean.

My husband wanted to go out last night and we couldn't because I was in so much pain. You know, it's difficult to watch what Fibro and/or Allodynia (or for that matter any condition that robs one of the quality of life) steals from our friends and loved ones of us. I find myself becoming more and more sorrowful at times when I can't function to do normal things. That's one of the reasons I started this blog. It helps me remain in balance and keep my perspective.

This morning my husband vented about not being able to make plans with me because we always have an "if" hanging over our heads about how I may feel on a given day or time. I know he didn't mean to hurt me with what he said..... but it did hurt. It hurt because it was embarrassing and because at such a young age we should be able to go out and have adventures and experience life together like a normal couple. I get angry sometimes because I have all of my body parts... and they SHOULD be working properly! Augh!!!


Friends, the important thing about any condition that limits us... is to KEEP TALKING. I understand the extra burden of having to explain ourselves all of the time.... believe me. However, educating our friends and loved ones about our condition(s) is a huge step to awareness and helping them to deal with the situation as well. There are going to be times that they become frustrated and feel hopeless and it's completely normal for them to feel that way. They love us and want to spend time with us and have fun doing things together.

When you lose out on a opportunity such as I did this weekend.... make sure to take another opportunity as soon as you can. Don't give up and stop fighting for your quality of life. Fight back by giving yourself the gift of time as soon as possible after facing a loss of activity with those people who are important to you. Make sure to tell them that you aim to make time with them as soon as possible when you feel better. It gives you hope and it gives them hope too.

Here's to your success!

Friday, August 8, 2008

*Work At Home* - Cust. Service Agent

Hello Everyone,

I want to give you the link to a company website that offers the ability for you to work as a Customer Service agent at home. You set your schedule, so it's flexible.

One of our family members has been with West At Home for over a year now. He said it really helps their family have the extra income they need to make ends meet. After he gets home from work, he has dinner and then gets ready for his shift with West At Home. His lovely wife suffered a ruptured aneurysm last year and we almost lost her. Thankfully she pulled through after a very traumatic experience. With the extra hospital bills he chose to work with West At Home part time. This has helped them get back on their feet and they can both spend time together and with their two girls.

I don't refer products, services, or opportunities unless I have used them, tried them and found them worthwhile, or know someone trustworthy who has used them and can give me a good referral. I like to be able to give you good and useful information that helps you whether it's in business or regarding fighting Fibro and/or Allodynia.

Here is the link for you

Here's to Your Success!