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?
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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!!!

Good Job...Complimentary Medicine

As MS patients we have all gone into Neuro's office to review our lab tests and been told some of our levels are low.  For the majority of us it was probably Vitamin D...for others it could also be B12, Magnesium, or many others.

I know for myself when I was first diagnosed with MS in 2010 my Vitamin D level was a 4.  normal is 30-70.  Needless to say...i was SEVERELY low.  With a doctor monitored regiment of higher doses of vitamin D, my level today is around 36 and although its normal, we are working to get it higher.  my doc wants me closer to 60.

What are common Vitamin Supplements that we take as MS patients?

• Vitamin D3 - Vitamin D is thought to help reduce relapses and help slow progression of the disease.  If you have not had your Vitamin D level tested, ask your doctor.  Its a simple blood test that can be done
• Calcium
• Magnesium  - those with low magnesium can have troubles with spasticity.
• Omega 3's - these are great for the heart and immune system
• Vitamin A   helps rebuild a leaky gut.
• B12, B6, B1, B2, B3, B5, folic acid -
• The release of energy from food.
• The normal functioning of the nerves and brain.
•  Maintaining healthy skin, repair and maintenance of tissue.
• Needed for a healthy myelin sheath, nervous system and bone marrow. Lack of B12 can impair the processes of the immune system. People with MS may be deficient in B12 due to malabsorption in the gut or to a disorder in binding and/or transport of the vitamin.
• Vitamin C -  Needed for a healthy immune system, repair of tissue and production of collagen.
• Vitamin E -  Enhances immune response, slows down the degenerative process, regulates platelet aggregation.

• Mineral and Trace Elements
   
  • Zinc .
  • Copper
  • Selenium .
  • Manganese
   
• Antioxidants They are vitamins, minerals, and other nutrients that protect and repair cells from damage caused by free radicals
• Grape Seed Extract/Pycnogenol (super antioxidants), - Helps deal with free radicals and strengthen the blood brain barrier.
• Alpha-Lipoic Acid  - A very potent antioxidant which can travel across cell membranes to find free radicals both inside and outside cells.- this is a very costly antioxidant 
• Gingko Biloba - Helps maintain healthy peripheral circulation, including blood to the brain. Helps memory and cognitive functions.  Also has positive effects on platelet function. 

• L-Glutamine - helps protect against a leaky gut, which is common in MS. Glutamine is the most important nutrient and fuel for the mucosal lining of the small intestine and the colon. It is also essential to proper function of the immune system

HERBS

1. Ginger
2. chamomile
3. myrrh (its not just for Christmas)
4. cannabis (hope one days its legal in all states so everyone can benefit)
5. St John's Wart - depression -don't take if you will be outdoors and it could cause issues for those who have heat tolerance issues

 ***ALWAYS - TALK TO YOUR DOCTOR FIRST BEFORE STARTING A VITAMIN or HERBAL REGIMENT TO ENSURE THEY ARE NOT HARMFUL FOR YOU OR THE MEDICATION REGIMENT YOU ARE ON.

Mindy Body and Soul

• Meditation (with aromatherapy) 
• Yoga
• Massage
• Acupuncture
• Tai Chi

Exercise and Diet - regiments, no matter what they are should always combine a healthy diet and plenty of exercise.  For those with mobility issues, there are adaptive exercises or some use aquatic therapy to help.

There are many other Vitamins and minerals out there that I didnt list.

information in this blog provided by msrc.co.uk,  nih.gov, and mayoclinic.com

Are you ready for a storm?

Are you Ready for a Storm?

 

 

Hurricanes, snow storm, ice storm, torrential rains, tornado's, etc.

 ARE YOU READY??

Do you have mobility issues?  Cognitive issues?  Heat or cold issues?

For those in the Northeast baring down for Sandy (lets hope it fizzles out) or any other storm - here are some things to keep in mind that I have seen posted.  Please Comment if there is anything that was left out!!!


most of these shared by our co-founder Sharon

1- make sure your meds supply is up to date and you have all you need.

2-Flashlights- keep all flashlights in a specific spot so you know exactly where everything is.

3-Batteries- make sure you have different size batteries AAA, Double AA, C'S & D'S

4- Candles and Butane lighter ( the long ones you can use to start up your BBQ grill)

5- Gas up your cars/make sure your tires have proper air
 • Car charger for your cell phone. If your cell loses "juice" you can always run out to your           car and charge your phone.

6- Buy non perishable items to have on hand, soup, peanut butter, dry cereal, crackers, spam,  etc.

7- Get a "old school phone"  - a phone with a cord. If you lose power you can remove the battery powered phone from the jack and use the phone with a cord - put that into the jack which doesn't require batteries and you'll have phone service.You can go to a pharmacy, a 5 & Dime store they usually have them for under $10 (she sadly learned this during 9/11 so she could have phone service)

8-THIS IS KEY!!!!! Make sure your power company knows you are disabled (they keep that on file) and USUALLY if you lose power they attend to those first listed as "disabled"

9- Have distilled and regular bottled water.

11- Hand crank radio/flashlight (I found them at RadioShack) I have seen them run $40-$200 - but the one time investment is so worth it, especially when you need light or access to hear what is going on in the outside world (you can use it while camping too)

 12- Make an emergency bag. Extra clothes for you & your family ,tooth brushes toothpaste, brush, feminine items, spray shampoo, medications, and personal items. A list of meds, doctors names addresses. Also in this emergency bag keep all of your important documentation IE birth certificates, passports etc.

If your in a low lying area highly important in case of evacuation.

put this in a liquid tight bag or liquid tight plastic bin

13- DONT FORGET ABOUT YOUR PETS!!!! if you have pets make sure you have enough food and water for them, if they take meds for aliments make sure you have their meds on hand as well

14- if you have kids, charge their Nintendo DS, Nooks (even your own Nooks or Kindle) if you lose power you make sure the kids are occupied

15- I have bags of ice in my freezer. If you lose power put the bags of ice in your frig/frigs it will help keep things from spoiling. Don't open and close the door to the frig, keep it closed so the cold air doesn't escape. this is important especially if your medication require refrigeration



16 - fill your bathtub with water. if you are without power for extensive period of time you may need this for bathing - brushing teeth - during storms your running water can become contaminated and you wont have power to boil it first

17 - get cash out of the ATM - if no power  - no ATM's or Credit card machines will work

 

18 - if you have a portable AM/FM radio make sure batteries are fresh (if you don't have a hand crank radio)

19 - if you have a generator make sure it works. if its gas powered be sure you have gas for it (a few cans as backup)


20 -make sure you have gas/charcoal for your grill - if you lose extensive power and the ice runs out you can grill your meats and other foods before they spoil

21 - if you have portable/non electric powered fans/heaters make sure they work and if they take batteries you have enough strictly for them

22 - update your First Aid Kit

In Florida as most of our storms are hurricanes, we board up our windows - if the storm coming your way allows time for it, it may be a good idea.

if you are approaching a devastating storm, GET OUT!!!  Call a friend of family member in a different area or go to designated storm shelters

If you can - reach out to one person after the storm is over and let them know you are ok or if you need help  and have them spread the word. 

Join our Fundraiser to Support Multiple Sclerosis (click above Logo)

Be a Take-Charge Patient

Award Winning Author Martine Erhenclou , patient advocate and speaker joined our SecureACure4MS Blogtalk Radio show on Friday October 5th. Her first book the critically acclaimed Critical Conditions~The Essential Hospital Guide To Get Your Loved One Out Alive, received 15 awards. Martine empowers patients to become pro active and well informed participants in their own healthcare. Upon further research Martine wrote another highly acclaimed book which we will be discussing this evening the title of this book is The Take Charge Patient.

Listen to internet radio with SecureACureForMS on Blog Talk Radio

The Doctor-Patient relationship is very important for you and your health.  Here is what Martine suggests we do when seeking a doctor:

Find a doctor:

       • who you like;

       • who you can talk to and who listens to you;

 

       • who you can collaborate with in a partnership;

       • who respects you;

 

       • who will reach out to other physicians for more information, putting

         ego aside

       • who returns phone calls;

 

       • who is invested in your health and well-being.

 Be mindful that our Doctors are not House - they are not mind readers, we need to communicate with them about what is going on so they can effectively help us.  With holding information is a disservice to you, your doctor and your health.



When you see a doctor, at the end of your visit, get your medical records for that visit!!!!  You have a right to them.  Get write up of visit, any test results, copies of MRI's or other scans.

Tips from Martine to prepare for a successful doctor’s appointment:

1. Prepare a list of questions for your doctor. What do you want addressed in the office visit?
2.  Create a brief health summary that includes:
-your top three medical concerns
-your list of current medications and their dosages, over the counter medications, herbs and supplements
-any symptoms you’ve been having, when they occur, what makes them worse or better (for example: exercise or eating) and what you have tried for symptom relief.
-List any medical professionals you’ve seen for your current condition or for other conditions that pertain to your visit.
3. Prior to your appointment, obtain copies of any test results and reports that were done by other physicians. Bring these copies with you. Never rely on a doctor’s office to send them as medical offices are very busy and your request can be easily overlooked.
4. If you are seeing this doctor for the first time, create a brief health history including major medical events such as surgeries, serious illnesses, medical conditions and more.

Please know it is OK and encouraged that you get a 2nd opinion's or more.  We know our bodies and know when something isn't right.  Don't just settle if in your gut and with your research you find more information.  Talk to your doctors about what you find.

Being a Take-Charge Patient means you are knowledgeable about your condition. RESEARCH RESEARCH RESEARCH!!!!!

Please don't do what a lot of people do (including myself at one time) and just start typing your symptoms into Google:
1 - you are going SCARE yourself
2. - you are more than likely not get the information you need
3 - you wont receive credible information

Research at sites that end in .edu, .org. gov

Go to the Disease's specific websites, such as National Multiple Sclerosis Society (www.nmss.org), Multiple Sclerosis Association of America (http://www.msaa.com) Nancy Davis Foundation (http://www.erasems.org)

Make sure your Sources of information are credible - for your sanity and health.

There are too many times that we hear about Medical Errors in health care.  What can we do to help prevent them?

One of the most common medical errors is in prescription medicine. Its important that EVERY doctor or medical professional you are seeing knows what drugs you are on to avoid double dosing or prescribing something that will cause a bad reaction due to other medication you are on.
when you receive your prescription for the pharmacy - verify you have the CORRECT medication. Sadly, its been know that the wrong medication is filled or you are handed someone else's prescription.


Martine recommends:

Every patient should carry a Medical ID card.  This will list information that is needed in case you are not able to speak and it allows others to see medication and illnesses you have been diagnosed with.  As well as Emergency information.  Below is a snippet of the card

 

Martine has available on the Take-Charge patient website a FREE download of the Medical ID card template.  Please go to http://thetakechargepatient.com/pdf/MedicalIDCard.pdf

Martine has provided to everyone on her website resource to assist us such as:

Sample Questions to Ask Your Doctor and Yourself

Questions to Answer Before You See Your Doctor

Questions to Ask Before You Select a New Doctor

Questions to Ask Your Doctor about Your Diagnosis

Questions to Ask about Your Health Insurance Provider

Questions to Ask about Medications

Questions to Ask Your Doctor about a Surgery

Questions to Ask Yourself about Your Symptoms

Questions to Ask Your Doctor about Tests and Procedures

Questions to Ask Your Doctor about Your Treatment Plan

 

This is such a small portion of what Martine's provides.  This is a resource we strongly encourage EVERY person to pick up. You can get more information at www.thetakechargepatient.com

 

BE A TAKE-CHARGE patient

 

 



Give em something to Talk About - Advocacy

I was watching a college football game a few weekends ago and I was AMAZED at what I saw...I have NEVER seen this before... It was an COMMERCIAL  for MS by the National Multiple Sclerosis Society


SecureACure4MS.org, National Multiple Sclerosis Society, Nancy Davis Foundation


I wear an Orange Cure MS bracelet proudly

Some paint their nails Orange

A few weeks ago a slew of MS patients painted the Tampa Bay Rays stadium Orange by wearing Orange MS tshits

Wearing Orange Ribbons on World MS Day

Participating in Walk MS, Bike MS, Challenge MS or other events

talking to family, friends, or anyone about MS

What does all of this mean?

Thats right - these are Groups that Advocate or are ways YOU can or have shown advocay towards MS

ad·vo·ca·cy (from Bing)

[ ádvəkəssee ]

1. giving aid to cause: active verbal support for a cause or position 

"Advocacy Is Empowering
Let’s face it. All too often, we sit around and complain about how the system has failed, how the government is making poor choices, how research dollars are going into the wrong pockets, or how accessibility is lacking in our community. Becoming an advocate means having the courage to take action and do something about the many injustices we see in our world. Taking action, whether we do it alone, with others in our community, or with our support group, is empowering. Those of us who have the power to fight must do so for those who are no longer able to fight for themselves. Maybe we won’t see the fruits of our labors – but the next generation will." msfocus.org

 

 

Become an Activist

 Activist - 1 . one who is aggressively active on behalf of a cause

 

• take charge of this disease
• educate others
• lobby your politicians
• educate employers
• create awareness

WHY DO I NEED TO BECOME AN ACTIVIST AND ADVOCATE?

 

Multiple Sclerosis is unfortunately not a disease that everyone knows about.  We need to make sure that EVERYONE knows what this disease is and the fact we do not have a CURE yet.  We need you to advocate on behalf of this disease, your fellow MS'ers YOURSELF - when people are donating their dollars each year, we want MS top of mind. 

 

We can be the voice for those who are not able to.

 

without advocay our government won't recognize our needs (SSI, SSDI, Medicaid, Symptom equipment, Plaquards for our car, etc) 

 

 

 COMMUNICATION IS KEY!!!!

The Power of One - One call, one letter, one person you talk to  - it only takes ONE

 

Activists help create CHANGE

 

YOU CAN BE AN ACTIVIST

NMSS has a great toolkit for those with interest