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!!!
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 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:
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/
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 tohttp://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
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
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.
