Seeking: MS CURE a Prayer/Poem/Wish

I was feeling a litte creative today.  While viewing the great MSAA website and looking at thier list of MS symptoms... this prayer/poem/wish came to me and I wanted to share.

What amazing people you all are.  Every day we face one or more of the many symptoms that come with MS.  Yet WE NEVER GIVE IN, WE ADAPT to our situations.  I truly Pray everyday for a cure for all of my SecureACure4MS family and everyone affected by MS in the world. 

Seeking: MS CURE

 

Now I lay me down to sleep

A Symptom Free day for all, is what  I seek

No vision issues or vertigo

To Ambulate without teetering to and fro

 

Dizziness you cannot stay

Lhermitte's, I want to keep away

Lesions or plaques Cause MS attacks

DMD's are our weapon's to fight back

 

Healthy diet and exercise

Ignore them and you may get an unwanted surprise

Some have bladder and bowel dysfunction

Depression, anxiety are not a welcomed junction

 

Fatigue makes us all so so tired

Medications however makes some wired

How about those who are sleep deprived 

What they have to do, to feel revived

 

Spasticity i wish was all hearts and flowers

Pain and Cognition Issues that occur any hours 

Over 2.1 million in the world with this disease

A Cure for MS, I pray for

 PLEASE

 

 

Now I lay me down to sleep

A Cure for MS is what I seek

 

A Prayer/Poem/Wish by Heather DeBold

 

 

SecureACure4MS© 2012-2013

Why ME? : 5 stages of grief Heather's journey thru grief process

 

for a lot of people these words trigger fear, anger, depression.
 

 
what did I do wrong?

I went through this same reaction, I am a religous person and started to question my beliefs... My Best friend (and founder of secureacure4ms) told me, Heather, this is very natural.Your life is changing, and you will learn to accept it.  If your think about it... you are griving your old self...sooon you will accept your new normal.  Once you accept it, you can start living your life again.  AND SHE IS RIGHT!!!!

I thought I would share with you the Grieving process  - Is this what you went through or are going through?  Have you completed all of the steps?  If you havent reached #5, its important that you get there so that you can start living your life to its fullest. If you havent gotten there yet and are having a hard time reaching that step, please talk to Sharon and I and we will try to help you reach that stage either by talking to you or referring you to our well respected resources. 


Here are the 5 stages of grief and how I personally handled each stage -

1. SHOCK and DENIAL

 


I have been diagnosed with what? 

no that cant be right, no one in my family has MS

my doctor is wrong, i am just tired, clumbsy..etc

I may lose my ability to walk?

What do you mean no  CURE?

I am too young to have an incurable debilitating disease

I may have to quit working in near future because of this disease? this disease is going to get me fired as its already screwed things up.

 
2. PAIN and FEELING OF GUILT

 

I brought this upon myself as  I was mean to my brothers growing up. 

 I didnt care about anyone but myself.  

I didnt help enough people.  

I am being punished. 

If I had gone to the doctor more.

If I had not eaten that cupcake and lost weight. 

If I had only exercised more. 

I am too quick to  judge and label people.  


3. ANGER/BARGAINING

What i have done in my life cant be that bad?

What did I do that was sooo horrible?

 I never committed a crime, went to jail..there are murderers on the streets who are fine...why am I being punished?
---------------------------------------------------------------------------

I promise to be a better person. 

I promise to put my friends and family first if you take this away

I promise I promise I promise..


4. DEPRESSION,  FEELING OF LONELINESS

Everyone is leaving me.  no one understands. 

They tell me "I look good" but dont really understand what is going on inside, 

There is no one for me to talk to. 

My priorities in life have been all wrong and now its too late 

I cant do anything anymore because I have MS

I have placed work before what is truly important in my life.

OMG I cant tell people at work 

Money doesnt bring me happiness...just material things that i dont really need. 


5. ACCEPTANCE of DISEASE
(my best friend Sharon got me to this stage - thank you Sharon)

I am done living in my lonliness. I am done being Angry.  I am done feeling Guilty.  I am done with all the negativity.  DONE DONE DONE.

I am NOT to blame for this 

I am STILL me. 

MS does not define me as a person. 

I can take charge of my life and be the ME I am meant to be.

I am not going to limit my life anylonger

I am meant to advocate for MS - hence Sharon and I started SecureACure4MS

 I am Hopeful and Believe that a cure is out there,

I no longer say "WHY ME?" its now

SecureACure4MS's motto is:

Never give in, ADAPT

 

A-Attitude - have a positive attitude
D- Determination
A- Aspiring - want for a cure
P- Perseverance -  be a warrior

T- Thankful - for all the research, discoveries and new treatment options available to us.  Thankful for our amazing families and friends

 
When I accepted that I am not MS Heather and looked at myself as Heather who has MS... my world changed.  It will for you too.  MS doesnt define you, it just explains a few things.  Before I say, I CAN'T DO THAT... I look at the situation and Try...maybe I cannot do it the same way as before, but I can probably still do it, just have to find a different way to go about it.

example.. after my diagnosis, I went on a trip to Niagara Falls.  I love that place, its very beautiful.  It was a very HOT day.  Normally I would just carry a bottle of water and be ok.  But I learned that I need to watch my body temperature.  So any opportunity I had to go inside of a store of gift shop allow the walk of the falls, I did.  I made sure I always had ICE Cold water on hand.  This allowed me to keep my core body temperature low so that I could enjoy the glorious beauty of the falls.  I could have easily said I cannot go out because it was too hot.  Instead I tried some different things first.  It worked for ME. 

The other thing on my trip is there are many observation points on the walk where you climb some stairs to reach these areas.  These are great places to take pictures and just observe its beauty.  With all the walking and the heat I was having trouble climbing the steps to these observation points.  What I found were wheelchair ramps and utitlized them...it allowed me to walk up the points and not burn excess energy.    

NEVER GIVE IN - ADAPT

 

Dont forget to enjoy your life and be present in your life. When you are truly living life, the ride is so much more FUN!!!

It's the 2nd half of MS Awareness Month

MS Awareness Week comes to a close but MS Awareness Month is still in full force. We are in the 2nd half of this amazing month.

MS Awareness lives and breathes for each of us 365 days a year.  We are honored to have a month of special focus
 

we want a cure

we DESERVE a cure

Let's Find that Cure TODAY

Unfortunately research takes money, which is why you saw many fundraisers throughout the MS Community.  SecureACure4MS is doing their part and teamed up with some great companies to offer great product, with the proceeds going to MS.  Missed out?  dont worry, these fundraisers are going through March 31st

We have MS Awareness Bracelets by Beads by Katrina

We have Living Lockets by Heather Young Origami Owl Living Lockets Independent Designer

We have Scentsy by Kelly Russi

We have our fabulous water canteens and Exclusive Glass Bottles by Hope-2o

 

During MS Awareness Week we were HONORED and Privelaged to bring you 2 incredible guests.  We were first blessed to have Cindy Richman who is MSAA’s Senior Director of Patient and Healthcare Relations.  She shared with us what the MSAA (Multiple Sclerosis Association of America) and what programs they offer.  They are an organization for YOU.  They only want to help you.  They have programs that offer:

Cooling Equipment
Barrier Free Housing
MRI Assistance
Toll FREE Helpline - (800) 532-7667, extension 154 Monday through Friday, 8:30 am to 5:00 pmET

They have a ton of resources at your finger tips,  They have a awesome Lending Librabry that offers

The MSAA Lending Library Program offers books on the following topics:

• Multiple Sclerosis – Medical
• Multiple Sclerosis – Daily Living/Care Giving
• Personal Accounts
• Health and Wellness
• Associated Ailments
• Foreign Language-MS
• Disability Issues
• Accessibility
• DVD/Video/Audio

Visting the lending Library to find out details of this program at http://mymsaa.org/msaa-help/lending-library/

They started SWIM for MS - Swim for MS in any pool at any time - for more details go to http://swimforms.org

Olympic Champion Missy Franklin is our MS Ambassador for Swim MS

Why Swim?  Many MS patients are under the mercy of using assisted devices to ambulate. When in the water, many say its a freeing time, as the assistive devices are not needed.  They no longer have balance issues as they do on solid ground.

For many others who have Heat Sensitivity issues, Overheating makes it difficult to exercise.  When in the water, the water acts as a cooling agent and allows the MS patient to do more without overheating and causing an issue.

If you missed our interview with Cindy Richman, you can listen to it on the MSAA webpage at http://blog.mymsaa.org/

SecureACure4MS is a proud supporter of the MSAA

On March 14th we were honored to speak to Dr Robert Fox.  Dr Fox is the Staff Neurologist and Medical Director at the Mellen Center for Multiple Sclerosis at Cleveland Clinic. He is also the Medical Director for NARCOMS

 

NARCOMS is the North American Research Committee on MS.  They are a Global Patient Registry for patients with MS.  This registy is completely confidential and the information you provide will be used along with the other Registrants for research purposes.  Some of the benefits of joining the registry are:

Benefits of Participation

• You help provide information needed to learn about Multiple Sclerosis and the progression of disease.
• You are asked to complete two update surveys each year.
• You are notified of clinical trials and other studies in which you may be eligible to participate.

There are over 2.1 million MS patients in the world and currenty around 36k registered with NARCOMS - we need to spread the word and get more people registered.  Dr Fox and his collaborating research partners are working hard to find new Disease Modifying Drugs for us, working on a CURE and also doing a lot of research to help those with progressive forms of this disease.

There vision is : 

 

• The Vision of the NARCOMS Global Patient Registry is to improve clinical care and quality of life for persons with multiple sclerosis and their families through increased knowledge about MS.
• We strive to develop collaboration between centers of excellence in MS throughout the world to increase knowledge, leading to improved clinical care and quality of life for MS patients.

if you are not yet a memeber of NARCOMS... go to http://narcoms.org and click on "become a participant"

If you missed this interview with Dr Fox, it is featured on the NARCOMS website. ( Left side)


we have great shows lined up for you to close out the month  -


March 18 - Adam Pinkney, founder of YAMS - Young Americans with MS. 
March 21 - SecureACure4MS is on the Positive Experience Show
March 24 - Robert McBurney of Accelerated Cure Project
March 26 - Author Richard Cheu
March 28 - MS Advocate Amy Schack

 

All events came be found on the EVENTS tab at www.secureacure4ms.org (left side of page)

 

 

We hope you will join us for these exciting events and call in to speak to our guests who would love to answer your questions.  You can also join us is the chatroom during any show and ask your questions there.  Sharon and Heather will then ask them on your behalf.  To chat with us, you will need  a blogtalk account.  Sign up free at Blogtalkradio.com - be sure you are signed in during our shows and interact with Sharon, myself and the other listeners.

 

 

 

 

 

 

 

* some information contained in blog came from MSAA and NARCOMS websites

 



March Awareness 2013

 

Multiple Sclerosis Awareness Month

Multiple Sclerosis Awareness month is an effort by SecureACure4MS and many other MS organizations to spread Awareness of our disease, educate everyone we meet and raise money for this incurable disease. March is a very important month in the MS community.

Join our Fundraising efforts by shopping below or donating directly to us. All proceeds are donated to MS research and every $1 puts us closer to a cure.

Here a few Fundraisers that SecureACure4MS is doing to help raise money towards a cure for MS.  100% of proceeds are donated. Take a look and pick up a logo'd canteen, and logo'd tshirt or maybe some logo'd office gear.

 CAFE PRESS

 

 

 

ZAZZLE

 

 

 



 

Logo Canteens and
* EXCLUSIVE  Limited Edition Glass Bottles

 

 We will be setting up other Fundraisers with products from

Tupperware
March 1-31

 

 

Oragami Owl - living lockets  - these are amazing
(make sure it says Heather Young in top right corner)
join our facebook event where Heather shares ideas and answers your questions
https://www.facebook.com/events/502912923088960/#!/events/455854187818557/

March 1-31

 Beads by Katrina - Round beads only $20 and Flat $26
"like" her page - send her Message letting her know what you want to order


March 1-31

 

 

 

   

 

   

 Pass these fundraisers on to everyone you know.  Some people prefer to send direct donations...and we welcome them.  Let them know that 100% of every dollar received goes directly to MS.  They can direct donate on our website at http://www.secureacure4ms.org/

 

MS Awareness Month is about education and awareness as well.  Here are a few ideas on what you can do:

 

• Wear Orange - paint your nails, wear MS logo'd gear (you can get some great shirts through our stores on cafe press and zazzle), take some orange ribbon and make a ribbon out of it...you can put a hat pin or safety pin through it and wear it or pin one on your purse as a conversation starter.

• Volunteer at a local MS Awareness Event
• Walk MS, Bike MS, ChallengeMS
• Spread the Word to everyone
• get involved in your local support groups
• Swim for MS
• Ask local retailers or restaurants to donate proceeds to MS for the Day/Week/Month
• attend the many free seminars, webinars offered in your area
• invite friends and family to join you at www.facebook.com/secureacure4ms

 

SecureACure4MS is bringing you an AMAZING lineup of FREE LIVE Blogtalk shows - here is who we have booked for you so far

 

 

HOW ARE YOU RAISING AWARENESS?

MS impacts us ALL - Let's get the word out so we can come closer to finding a cure

video from MS Society http://nmss.org 

Some great resourses for you to check out:

 

NARCOMS - National MS Patient Registry - http://narcoms.org/
 
 

 

Multiple Sclerosis Association of America- http://mymsaa.org/

 

Nancy Davis Foundation - http://erasems.org/

National Multiple Sclerosis Society - http://nmss.org

 

Accelerated Cure Project - http://www.acceleratedcure.org/

 

Be an MS Activist

video from MS Society http://nmss.org 

 

 

Look into MS 2012-2013

Happy New Year

I dont know about you, but 2012 went like a flash.  I hope you all enjoyed the holidays and celebrated with your family and friends.  I have a lot to be thankful for that MS has brought me.... Heather are you nuts.... you are thankful for your MS...why would you be thankful?

I am not thankful for the disease itself, but it has brought me blessings i would not have had if it werent for this disease...


I am thankful for my amazing MS sistas Elyse and Jen... they make this journey so much easier for us all.  They are the most amazing people. 

I am thankful for ALL the amazing people in the MS community that I have had the honor to meet either in person, or in our support groups.

I am thankful for all of the SecureACure4MS followers, blog readers, blogtalk radio listeners, twitter followers and those in our Facebook group.

I am thankful for all the amazing friends and people that joined my life.  Everyone has made a difference for me.

Most of all, I am thankful for my best friend who has become my sister. 2 and half years ago we were just 2 people on facebook that had MS in common. Today we are the BEST of friends and we look at each other as sisters. MS does have its blessings..Sharon is proof of that. Together we had an amazing year with our not-for-profit SecureACure4MS (which would not have been formed if we had not been put in each other's lives)

2012

 

In 2012 the MS Community had a new Oral therapy hit the market. 

Aubagio

More research into Stem Cell's was made

Can a Simple eye scan reveal extent of Multiple Sclerosis?

Researchers Identify New Factor That Plays Role in Multiple Sclerosis

More states legalized the use of Marijuana

Missy Franklin, ambassador for MSAA,  swims for Olympic Gold.

Scientists Identify Key Biological Mechanism in Multiple Sclerosis

SecureACure4MS launched its first fundraiser  http://hope202011.onlybusiness.com/OnlineCatalog/SAC4MS-list.aspx.  Canteens are still available and all proceeds benefit MS .

2013

 

We have a highly anticipated MS Therapy that should have FDA approval at the end of March. This is an oral medication called BG12 made by Biogen (makers of Tysabri) - Be sure you are following us on Facebook and Twitter as we will be providing updates as we receive them.

The FDA has approved Rebif Rebidose and it should be available for purchase in 2013
-Rebif RebiDose was designed with the objective to assist with ease of use and to offer patients an alternative delivery option. In the US, it will be available in a monthly pack in two different doses, 22 micrograms and 44 micrograms, and in a titration pack

Marijuana is still heavy in the news.  I have a feeling we will see more legalization of medical marijuana in 2013

Revalesio's RNS60 Protects Myelin and Halts Multiple Sclerosis in Mice

Wikipedia lists the following as Phase 3 therapies in clinical trial... this is exciting to see so much research in its last phases

Alemtuzumab (injectable. brand names: Campath and Lemtrada; under development by Genzyme and Bayer Schering)

• BG00012 (oral). A fumarate ester under development by Biogen;

• Daclizumab (injectable. Brand name Zenapax; under development by Biogen and PDL)

• Tovaxin (injectable)  It is developed by Opexa Therapeutics,

It excites me to see all of the new therapies on the horizon. I look forward to all the discoveries that are found in 2013.

Just remember...Never give in to your MS... ADAPT!!!  Most things can still be done, dont limit yourself.  ADAPT... most things can still be done, we just do them a little differently.  ADAPT

Wishing you all a Happy and Healthy 2013.  Thank you all for being part of the SecureACure4MS family.