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.
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,
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!!!
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
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.
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.
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
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.
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
Ginger
chamomile
myrrh (its not just for Christmas)
cannabis (hope one days its legal in all states so everyone can benefit)
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.
I hope the only thing people are facing is the Tryptophan coma from all of their leftover Turkey. Thanksgiving is a time to give Thanks for all the blessings in our life - not material things but gratitude's that have blessed our lives. This year has had its highs and lows for many of us. But one thing stays forever, our SecureACure4MS family. Family is forever. Sharon and I are blessed and truly thankful to have you all as part of our family.
Black Friday - for many this is a Tradition. Retail establishments for one day (it used to be one day) put merchandise at a deep discount. Many offer great door buster sales to the first shoppers that come through their doors. For many stores the offers are sooo great that people camp out in front of the store to ensure they are first in line. Here in Florida we had some camping out a full week in advance. Have we gone too far? I am not going to dis those that choose to shop as I hear from many that with all the discounts they were able to complete most if not all of their holiday shopping. Prior to my MS diagnosis I could keep up. But now I have issues starting with the parking lot, and the crowds of people pushing and shoving. I like to take my time and shop, not have to worry that someone is going to snatch up an item under my nose. WHAT ARE YOUR THOUGHTS?
BLACK FRIDAY OR NO BLACK FRIDAY?
I spent my Black Friday decorating the house. I woke up that morning. Had my coffee and a bagel. My grandmother was coming over around noon to help me decorate. I could not wait that long. By 830 am I became SUPER WOMAN
Stockings are hung by Fireplace. I decorated mantles, the ficus tree, coffee tables, dining room. Hung wreaths, swapped out towels and rugs. I was like a Mad Woman on Friday. I was blessed to have my grandmother come over around 1pm and she was like, "you have Most of it up, there isn't much for me to do". She brought her old village set and set it up on one of the cabinets in the dining room and helped me decorated the tree with ornaments.
My parents and brother will be in for Christmas and I want it to look nice. The whole family is coming to the house on Christmas day for dinner (except my baby brother and his family). I want the house to look extra special for my mom since she isn't here to decorate it herself. (she will be in 2 days before Christmas)
I have to say the house looks great.. Between my grandmother and I we accomplished a lot.
BUT,,,,it seems with all good things there comes a BUT
And I knew it but put my "BUT" aside to ensure I created a festive environment for everyone who comes to the house. I took full advantage of the "energy" burst I was feeling and boy am I paying for it. I am super tired and my legs are tight and in pain...
WHY DO WE OVERDO IT WHEN WE FEEL GOOD?
I KNOW the price I will pay for it... so why do I do it?
This is my favorite time of year. Being a transplant from Ohio its VERY hard to get in the Christmas spirit in Florida. There is no snow and most days we are outside in shorts and t-shirts. We in Florida, well at least me, dream of a White Christmas - I love going up north for Christmas. I think EVERYONE in the US should have snow on Christmas Day (then it can go away). I love the music, in fact that is all I listen to until day after Christmas. I love the Hallmark Christmas movies, old classics like Frosty the Snowman and Rudolph. And the classic Christmas Vacation. I just love Aunt Bethany and watched this movie 3 times already this weekend.
I love the lights, the decor. The change in spirit, during the holidays warms the heart. People seem to be more giving, more tolerant, more patient (except when trying to find a parking spot at the Mall)
It's amazing what we as MS'ers do and sacrifice for the love of our family and friends. But we have to take care of ourselves. If we don't take care of ourselves we won't be able to take care of our loved ones or may have to miss out on opportunities because of increase fatigue, pain, or more severe, a relapse.
Ask for help - allow for help - conserve your energy - remember what you use EXTRA one day may take away from what you have the next day.
As much as you may really love decorating. Let people help you put up a tree, string lights, put out decorations, bake holiday treats. All of this takes more energy than I realized.
I really like theSpoon Theory. Its symbolic of what we deal with.
My Christmas wish to you all (I know its early) but my wish is for ALL of us to have a Pain free, Symptom Free, Relapse Free Holiday.
1 in 5 in the US get the flu every year. Is there a way to lesson that statistic?
ARE FLU SHOTS SAFE FOR PEOPLE WITH MS?
Many people swear by the shot and many people get "sick" from the shot. Some believe that they get got sick worse the year they got the shot (even myself). The flu virus that is used in today's shots are grown in chicken eggs and immediately killed off so that chances of developing the flu from the vaccine is not possible.
Ok but I have MS, can i have the shot or no? Is it safe?
According the the National MS Society this years Flu Vaccine protects against 3 different strands of the flu.... you get a 3 for 1 deal in this vaccine (we all love a deal don't we? )
It contains the H3N2 virus, an influenza B virus, and this year's H1N1 virus
The strands are inactivated, so its a dead virus. This means it is safe for MS patients. here is an excerpt from NMSS website:
"It has been studied extensively in people with MS and is considered quite safe. The injectable flu vaccine may be taken by people who are taking an interferon medication, glatiramer acetate, mitoxantrone, natalizumab, or fingolimod.
However it is not yet known whether the vaccine is as effective for those talking natalizumab or fingolimod." (tysabri and gilenya)
I know we all hate injections....so what about this FluMist® I hear about. FluMist® is a nasal spray that is used to prevent Flu in people. However and this is a big one...it contains a live virus strain. NO NO NO - you should not use it if u have MS. Our immune systems are already on hyper drive, we don't need a live virus going inside of us and causing our immune systems to work extra for that. Or - with some medications, our immune system is deficient and the live virus can make us VERY sick.
Although the nasal spray is more appealing - just say NO
Here is what the Multiple Sclerosis Foundation Says: (sharecare.com)
"The flu vaccine is safe and effective for people with multiple sclerosis (MS). It is recommended annually for those who are susceptible to flu, likely to be exposed to flu, or who have respiratory problems or certain chronic disorders. Pregnant women who will be in their second or third trimester during flu season should also receive a flu shot. Importantly, FluMist Intranasal, the first flu vaccine in the U.S. that is administered as a nasal mist, is not recommended for people with MS. FluMist is a live-virus vaccine that may cause an increase in disease activity in those with MS"
I visited the CDC website to find out who should and shouldn't be vaccinated and here is what they say:
Who Should Get Vaccinated This Season?
Everyone who is at least 6 months of age should get a flu vaccine this season. It’s especially important for some people to get vaccinated. Those people include the following:
People who are at high risk of developing serious complications like pneumonia if they get sick with the flu. This includes:
People who have certain medical conditions including asthma, diabetes, and chronic lung disease.
Pregnant women.
People 65 years and older
People who live with or care for others who are high risk of developing serious complications. This includes:
household contacts and caregivers of people with certain medical conditions including asthma, diabetes, and chronic lung disease
Who Should Not Be Vaccinated?
There are some people who should not get a flu vaccine without first consulting a physician. These include:
People who have a severe allergy to chicken eggs.
People who have had a severe reaction to an influenza vaccination.
Children younger than 6 months of age (influenza vaccine is not approved for this age group), and
People who have a moderate-to-severe illness with a fever (they should wait until they recover to get vaccinated.)
People with a history of Guillain–Barré Syndrome (a severe paralytic illness, also called GBS) that occurred after receiving influenza vaccine and who are not at risk for severe illness from influenza should generally not receive vaccine. Tell your doctor if you ever had Guillain-Barré Syndrome. Your doctor will help you decide whether the vaccine is recommended for you.
When Should I Get Vaccinated?
CDC recommends that people get vaccinated against influenza as soon as flu season vaccine becomes available in their community. Influenza seasons are unpredictable, and can begin as early as October.
It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against the flu.
Please visit these sites i have mentioned to read more about the Flu Shot (there are hyperlinks in the blog to where i got the info)
According to all the research I have found, the Injectable Flu Vaccine is safe. If you still have questions on if its right for you, speak to your Neuro/MS Specialist.
I was one of those sceptics who felt they were sick more each year when they got the shot so i did without. I did decide this year to have it done as i want do do everything i can to stay flu free.
