My MS Story….

My Multiple Sclerosis Story…

The Reason Behind “MS FREE For ALL”

my ms storyI was diagnosed with RRMS at 17 years old when I was a senior in high school. I had Optic Neuritis, loss of balance, pain and numbness in my limbs and extreme fatigue. Back then we really knew nothing about MS. I was told by my pediatric neurologist that there would be a cure in 5 years. Yes, he said 5 years! Well, I’m now almost 43 years old and I believe we’re no closer to a cure today as we were back then. I know that is not going to be a very popular statement, but it’s what I believe!  I am healthy and strong right now not because of anything the medical community did for me, but by taking charge of my health, seeking out people, ideas, healthy products and acquiring knowledge of alternatives to stay healthy and not let Multiple Sclerosis control my life.

I want this blog to be a resource for all my MS friends, their family members, or anyone interested in learning more about Multiple Sclerosis or dealing with autoimmune issues. I wasn’t always an advocate for MS, in fact, at times over these past 25 years I’ve felt so out of control with this disease!!!  I feel now after dealing with MS all these years and being in a healthy state of mind, with a healthy lifestyle and a good support group around me, I am hoping to help others. I have been on a journey to learn more about this disease, how we can live with it, treat it, and finally beat it once and for all.

My MS Story Will Provoke….

I know there may be naysayers that will say I’m foolish for thinking we can be healthy and strong with MS. I believe that I have been given this disease and brought along on this journey (and it has been one heck of a journey) to share the things I am going to share with you!

My MS Story Has A Purpose…

I’m not a physician. I’m a human being who has dealt with Multiple Sclerosis and has said there must be a “BETTER WAY.” That there is much more to this disease and recovery than what is standard M.S. protocol.

My heart truly hurts for others that are hurting from MS, to their loved ones, and to those that are taking care of them; as I know the struggles you are having, the ups and downs, trials and errors, the pain and the strength we all must have to endure this disease. My hope is to unite the MS community in an attempt to share knowledge, ideas, and a world MS FREE for ALL!

Please enjoy this information and share! I look forward to your feedback!

To our Health!

Kellie

Extreme Temperatures and M.S.

cold weather BABY, It’s Cold Outside!!!!

It’s very interesting and ironic. As I sit here today finishing this article, I started to feel my fingertips and nose getting colder! So I walked to my closet and put on my husbands big Flannel hoping that would help. Well, no luck, turns out the heat is out!!! Waiting right now on the repairman and thinking how funny life can be as it looks like I’ll be taking my own advice today for staying warm!

Can any extreme temperatures cause an MS flare-up? I’m not sure where you’re located, but we’re now in full winter mode in Chicago. That means hat, gloves, scarves, ear muffs, snow pants, boots, you know, anything to beat the extreme cold. “BRRRR” seems to be my go-to word for the past few months and for anyone that knows me, Yes, comparisons of Chicago and Antarctica are definitely on my mind!  

Were you one of the millions of MS sufferers who were counting down the days for cooler weather?  Me too! Yes, heat and humidity can be very disruptive and cause minor, temporary flare-ups of our MS symptoms during the summer months, but did you know some people also have challenges during the winter months? It’s less common, but still can affect those of us with MS?

Some people do report worsening of symptoms just as much in the coldest part of winter as they do in the hottest months of summer!  You might be wondering if we can use ice, cold showers, cold compresses or cooling vests to cool down during the summer, why would the cold negatively affect us now, why is this different? The truth is that any drastic changes in temperature either hot or cold can have an impact on us.

Things you may experience due to the Cold:      

  • Fatigue
  • Spasms
  • Joint and muscle pain
  • Muscle stiffness
  • Numbness and tingling

The good news is, just like in summer months, there are things we can do to protect ourselves against the cold.

warm-winter-drinks-alcohol-free-caffine-free-healthy-drink-recipes

Make sure your house is properly insulated, check around doors and windows for any pesky drafts, there are plenty of low cost ways to seal them.  While you’re in, you can use a heating pad, blankets, extra clothing. Some people find warm showers or baths may relieve some of the stiffness, aches and pains. (Be careful to not become overheated!) You can also warm up with a nice cup of soup, tea or coffee.   

If you have to be out in the elements, try layering clothing to keep heat from escaping, protect your head and use hand or feet warmers. Also be sure to use any walking devices or aides to help you outside when your muscles can become stiff or slow to respond. Just like the summer months it’s very important to stay hydrated, make sure to continue drinking enough water, people tend to think just because it’s cold outside you can’t become dehydrated. Dehydration can also cause or complicate many of the above symptoms.

 

As I’ve said before, our minds are extremely powerful and I’d like to say it’s as easy as thinking Warm thoughts of summer to beat the cold, but your best line of defense is to be prepared for the elements, listen to your body, and seek assistance if needed.  You can learn more about MS in All About MS and Resources to help you on your journey! Enjoy!

 

If you have found this article helpful please share. As always, I look forward to and appreciate your feedback!

To our Health!

Kellie

OH MS, It’s really getting HOT in Here!

Heat, Heat and even more Heat!

Anyone with Multiple Sclerosis that hears that single word could have a streak of fear and images of terror from memories of summers long ago.  Many people talk about getting out there in the heat and getting baked to a crisp in the sun.  Us MSers however, have a very different stance on the heat!thermometer

In fact, many of us start in the winter months to prepare for the summer! Yep, you heard it, in the dead of winter we can start preparing for our upcoming summer and the next heat wave.  We focus on making sure the air conditioner is in tip top shape, all window treatments are giving maximum protection from the elements, getting cooling vests, head protection, traveling to a cooler climate and anything else we can get our hands on that promises us the chance of staying cool.

Yes, it’s that real and that serious!

I myself am very aware of the heat.  Living with MS now for over 25 years, my MS Story, may not be different than anyone else as heat intolerance was always the one thing that seemed to get me. My head use to feel like it was baking…literally from the inside out. So I understand first hand why this is one topic that we need to not only prepare for, but share the info so others do not have to suffer!

Things you may experience when you are suffering from Heat exposure:

1 – Dizziness

2 – Immediate fatigue – (Almost as if someone burst your energy bubble)

3 – Blurred Vision

4 – Shakiness or Tremors

5 – Numbness and that awful tingling sensation in limbs

6 – Decrease in your cognitive function (You knew you were smarter before you got into that sun, sauna or hot bath)

The very interesting fact about the heat and your Multiple Sclerosis is that yes, it can cause us to have symptoms that either appear or start to get worse during heat exposure. It does not cause any long term inflammation or lesions as happens when we have an exacerbation. Which is great news, but still we need to think about ways to stay cool and get over the immediate effects from the heat.

 

Some ways to beat the heat:

1 – Always have air conditioning.

2 – Cooling Products – You can Google it there are dozens to choose from. There’s also things you can do too – soak a sponge in water, freeze and then put in a Ziploc freezer bag, this stays cool for a long time and is very inexpensive. Contact the MS society they have cooling programs in place too.

3 – Get into the swimming pool.

4 – Misting Fans.

5 – Stay hydrated by drinking cool beverages – of course water is the best option. This will actually go to your core and immediately go to work on lowering your overall temperature.

6 – Keep covered when in the sun. By wearing a hat during summer it gave me more time to be outside before the heat would start to affect me.

7 – Eat foods that are cool – fruits, veggies, salads. Healthy icees made from real food, not stuff packed with sugar (that can also cause fatigue)

8 – If exercising in the summer workout later in the evening or earlier in the morning – making sure to stay hydrated.free-winter-picture-icicles

 

I would like to say it’s as easy as thinking cool thoughts, but the best thing you can do to beat the heat is stay prepared at all times and really listen to your body! You can check out All About MS to learn more about this disease!

 

If you’ve found this article helpful please share! I look forward to your feedback!

We’re in this together! To Our Health!

 

Kellie

 

 

Is this the Multiple Sclerosis Miracle?

Vitamin D – Is it the Multiple Sclerosis Miracle?

Vitamin D may be one of the most important nutrients to heal our bodies, not just from auto immune issues like Multiple Sclerosis but even cancers. Vitamin D deficiencies run rampant now – especially in Americans. It’s interesting that Auto Immune diseases, illness and cancers do too. Vitamin D levels are steadily declining, specifically in the U.S., as children and adults spend less time outdoors.

 

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Studies conducted by researchers at the University of Oxford and another conducted at the New Jersey Medical School and even the Mayo Clinic have suggested that maintaining adequate levels of Vitamin D may have a protective effect and lower the risk of developing Multiple Sclerosis. Vitamin D may even lessen the frequency and severity of our MS Symptoms. When you’re having an exacerbation, your Vitamin D levels may be almost non-existent! Of course more research is needed to assess these findings, but I believe what’s been revealed is groundbreaking and as research continues around the world I grow more hopeful and optimistic each and every day about its benefits to the MS community! When Vitamin D levels are optimized it may help prevent many types of Cancers,  Cardiovascular Disease, Diabetes,  Osteoporosis, Infections, Rheumatoid Arthritis. Any doctor can order a Vitamin D level test and it’s important to find out where you are currently so that you have a reference point in tracking your levels. Screening for vitamin D deficiency is especially important for African-Americans and other ethnic groups with dark skin, due to the decreased natural production of Vitamin D from sun exposure.

 

The link between Vitamin D and MS is strengthened by the association between sunlight and the risk of MS. The farther away we are from the equator, the higher the risk of MS. Sunlight is the body’s most efficient source for Vitamin D. An effective way to get your D levels up is spending 10-15 minutes a day (mornings are best) in direct sunlight with the least amount of clothing on.  The more skin exposure the more D that is produced. Don’t worry about staying out longer thinking that you’ll get more D, that’s not how the body works.

 

Supplementing your Vitamin D is very important and can be a great benefit. The Mayo Clinic and even in Swedish studies they’ve shown that the recommended daily allowances are no where near the levels we need if we are to combat Multiple Sclerosis and other illnesses. I take 8000 IU’s a day of Vitamin D3 with K2. During the summer months I take 4000 IU’s. You can also do your own research at the Mayo Clinic website as they have an reference guide for Vitamin D dosing correlated to your specific disease or symptoms. (As always talk with your trusted health care provider before starting any type of supplement.)1537562-daily-vitamins-on-a-white-background-fill-the-shot

 

The more I research, the more amazed I become! This is just the tip of the iceberg as to how AWESOME Vitamin D is for our bodies, our immune systems, and especially our Multiple Sclerosis!

 

To Our Health!

Kellie

 

 If you like this story please share! Knowledge is power and we’re building a platform to an informed MS community!

 

 

Multiple Sclerosis is NOT a Death Sentence!

hopewithribbonMy heart is heavy today as I write my second official Blog post!  Sometimes It’s hard to decide what to write, I mean, I want to share so much information that I’ve learned over these last 25 years dealing with this disease from being a teenager, to an adult, to a parent living with this chronic condition, it’s clear now why I was waiting on what to write.

I received a text from one of my best friends yesterday, “I NEED TO TALK WITH YOU NOW”! My stomach dropped when I saw the text and I ran to find my headset and phone to call him back. He began to tell me of a young lady, a wife, a mom of 2 young children who was recently diagnosed with Multiple Sclerosis.   I was anxious to talk with her to offer some support and HOPE! I know how scary it is when you have Multiple Sclerosis, the uncertainty of the disease course, the uncertainty of the future and how it will affect not only you, but your family.

Unfortunately, this was not going to be that type of call – He told me that she had committed suicide. My heart sank, I couldn’t believe my ears. I said Oh, No, what happened? I learned she was experiencing terrible headaches, pain at the base of her neck, chronic fatigue and had Optic Neuritis. Wow, Those are the same things I was experiencing when I was diagnosed 25 years ago. She was told by a doctor that she would probably have only 4 years to live…..Obviously that was a ridiculous, inaccurate diagnosis, irresponsible and just plain inhumane.  I was told she was sitting at the computer investigating day and night about MS and was terrified by what she saw!

Please, Please, Please – know this – Multiple Sclerosis is not a death sentence. You can have a productive and good quality of life too. Yes, Multiple Sclerosis is a sporadic and ever changing disease, but there are plenty of options for all of us. We have the top minds in research, medicine and alternatives working for us for a cure! THERE IS HOPE! I honestly wish I could talk with each person suffering and struggling with MS. Maybe we can devise a plan of attack, maybe we could just chat, and maybe they would understand they are not alone.

I am thoroughly upset by what happened to this poor woman, what if I could have talked to her, what if we could have gotten her some professional mental help, what if we could have gotten her to a local support group or even in one of these amazing Facebook groups we are a part of?

 

If you know someone struggling right now or if you are that person – Please reach out to someone!  YOU are not Alone! There is HOPE!

 

Your life is important!

You are important!

Don’t let MS define you!

 

If you like this, please share! We’re in this together. To our health!

 

Kellie

 

National Suicide Prevention Lifeline – 1-800-273-8255

National Crisis Hotline – 1-800-784-2433

www.mssociety.org – 1-800-344-4867 – “Knowledge is power section”  for newly diagnosed MS sufferers

 

Can we beat Multiple Sclerosis?

If you look to traditional medicine for that answer that would be a resounding and absolute “NO!” We’re told once you have MS you always have MS and we sit and wait for the next exacerbation, we live flare up to the next flare up. That’s how our lives are defined, by the medical community anyway. The medical community also tells us that MS has a mind of it’s own, almost taking away any chance of us being able to do anything to stop or slow it’s progression. I totally disagree with that whole scenario. There is far too much information out there to help us start feeling better. We must open our eyes and take control of our health.

I’ve been dealing with MS for 25 years – Yes,  this is my 25th year of living with this disease and I’m shocked at how some in the medical field will still say that there is nothing we can do to be healthy. They will tell us there is no “proof” that anything other than disease modifying drugs can help us. I’m sorry that’s just not true, I am living proof of that and there is far too much evidence to contradict that statement!

We know that some people with cancer, for example, would be considered “cured” if they didn’t have a relapse after 5 years. So why then is Multiple Sclerosis considered differently? Let’s say someone commits to changing their diet, they exercise, they change environmental factors, they look at their relationships, they look at healing the “whole” body?  What if we go for 2 years without a flare-up, what about 4 years without a flare-up, what about 6 years?

Can we ever say we are recovered from Multiple Sclerosis?Multiple Sclerosis

Multiple Sclerosis is very much an individual thing, but what if we take the 5, 6 or  10-year mark, relapse free, would that signify recovery? Think about it, what if we all strived to hit that milestone? If we stayed on the path to heal our immune systems, stay focused on recovery and being positive  – wouldn’t there be so much to gain by considering we are recovered? How much HOPE would that give people to think this is not a “Life Sentence?”

I caution you, in this process we cannot worry about every little symptom that may arise from our MS. This means do not think every challenge means a full blown exacerbation, possible hospitalization or even full disability. Our minds are so powerful, as anyone with Multiple Sclerosis knows, in fact, many doctors will not want us to focus too much on what could happen or might happen because we will often times start to manifest those exact symptoms! Instead, I say each of us should look at our lifestyles, what’s working, what’s not and do everything possible to target becoming healthy, heal our immune systems, and  just being happy!

We must take things in stride and put all our attention on our quality of life!

We can do it!

I hope you enjoyed my first post. I hope it was thought provoking and if you have any comments or  questions please respond below and please share this information! We are in this together!

To our Health!  Kellie

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