UNWANTED (a poem about MS)

UNWANTED

You came in and took over

No one asked you to

You are unwanted

You cause the room to spin You bring me to my knees

You are unwanted

You slow my mind almost to a halt

You make the words hard to say

You are unwanted

You crash parties

You make it difficult to do anything

You are unwanted

You make me exhausted

You make my bed my safe haven

You are unwanted

You blur my vision

You numb different parts of me

You are unwanted

You make my ears hurt

You make it hard to hear

You are unwanted

You make my legs feel like jello

You make my hands shake

You are unwanted

You make heat my enemy

You make fun only a memory that is quickly fading

You are unwanted

You make me miserable

You took my life many years ago

You are unwanted

You are Multiple Sclerosis

And I hate you

You are unwanted

Copyright Tiffany Harper 2005

(revised 9/23/10)

**Please ask permission before sharing**

Pills, needles & surgery...oh my!

It is funny how a particular topic sticks with you. I have been thinking about this topic for about a month now and must blog to help ease my mind. LOL

Important Note - The information listed below is that of my own opinion and is not meant to be medical advice. I have no medical background and am just a person living with MS that has developed a passion for sharing information (and my opinion) with others. Always consult your doctor for medical advice.

Okay...
There is a bunch of information swarming the internet about various different treatments for MS and a bunch of opinions about which is better. I have mentioned before and will mention again...MS is DIFFERENT for everyone. In the two years I have been officially diagnosed, I haven't met one person that is on the same exact list of meds.

There are different kinds and different purposes for every single one. There are meds called disease modifying therapies, meds to help manage symptoms, complementary & alternative meds & practices and even surgery. It can be rather confusing....but that is normal for MS! LOL I will try to break it down into sections for easy reading:

Disease Modifying Therapies ~
The disease modifying therapies are Copaxone, Rebif, Betaseron, Novantrone, Avonex & Tysabri. The purpose of a disease modifying therapy is to slow the progression of an individual's MS. They are all administered by injection or IV infusion and each have their own set of side effects.

I found this link that describes each of the disease modifying therapies~ http://ms.about.com/od/treatments/a/ms_treatment.htm

It is common that a person newly diagnosed with MS is told to start a disease modifying therapy ASAP to slow the progression of their disease as quickly and as early as possible.

MS Management ~
Each person with MS has different symptoms and there is usually a combination of medicines and therapies that an MSer is on. These can be anything from pills to steroids to physical therapy...it all just depends on the particular individual's needs.

The National MS Society has pages on their website dedicated to symptoms & lists common management treatments, here is the link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/index.aspx

Complimentary & Alternative Medicine (CAM) ~
CAM is for MSers that are looking for a more natural way to go about managing their MS. CAM includes anything from lifestyle changes to vitamins to acupuncture. There tends to be not enough information out there about these treatments and so caution & consulting your doctor is always recommended. The National MS Society has put together some information that is helpful, here is the link: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/complementary--alternative-medicine/index.aspx

There is also a book specifically about CAM that is available, called "Complimentary and Alternative Medicine and Multiple Sclerosis by Dr. Allen C. Bowling, MD, PhD...here is the link: http://www.demosmedpub.com/prod.aspx?prod_id=9781932603545

Newest Treatments ~
There are two things that are BIG topics in the MS world...oral medications and CCSVI.
The oral medications are still in clinical trials and there are reports of serious side effects, but I have read that there is potential that they will be approved by the FDA in the next year and make a slow penetration into the market. Here is an article on the oral medication topic: http://www.minyanville.com/businessmarkets/articles/ms-multiple-sclerosis-ms-treatments-gilenia/9/20/2010/id/30177

CCSVI is actually a surgery to open veins that aren't allowing proper blood flow from the brain & spine to the heart. CCSVI is still very controversial, especially with relation to MS and the effectiveness. However, I've read several success stories and some are even calling it a "liberation treatment". Here is a link with more detailed information about CCSVI: http://csvi-ms.net/en

Now that I've listed all of the information about many of the current treatments for MS (and I know there are probably more that I didn't even cover)....I'll explain why the topic of this blog post is "Pills, needles & surgery...oh my!" I think that there is a common frustration among MSers because there isn't a clear understanding of the long-term affects of the medications that we are being told to take. The common age for diagnosis is between 20 to 40 years old and since MS is a chronic illness...that means we are going to be living with it for another 40 to 60 years or so. I think this generates a desperation to find a cure...or at the very least a better way to manage the progression & symptoms! When I was first diagnosed in 2008, I was ready to start disease modifying therapy and take whatever pills necessary to maintain my life. However, the more I accepted my MS and the longer I continued to take my medications...the more I realized how frustrating it is to be on pills & injections the rest of my life. I want a cure....period. Sure, sounds simple enough, right?! HA! I doubt that we will ever see a cure for MS (or any other chronic illness or cancer for that matter). There is something seriously messed up about the government because it is not an easy process to get the necessary research funded. Plus, think about it...if cures were found...how much money would the health care industry and pharmaceutical companies lose?! Billions and billions of dollars are spent every year by those that are living with chronic illnesses and trying to save themselves from cancers. Hmmm...I know...sounds like a conspiracy theory...but it does make one wonder....

Phew...I'm glad to have gotten this topic out of my head for now.

Thanks for reading! Hugs to all!!! :)

Coconut oil...beneficial for those with MS???

A little over a week ago I added coconut oil to my daily dose of supplements. Coconut oil had been suggested by a very dear friend of mine back in April 2010 and I didn't jump on the coconut train at that time because I was hesitant and a little fearful about how my body would react...hindsight is always 20/20 right?! LOL
A few weeks ago I got a nasty cold and was very frustrated with my lack of progress in getting better...which sent me into a spiral of trying to find the best way to get healthier and stay healthier. There have been a bunch of suggestions, but the only one I'm talking about today is COCONUT OIL.


I am not an expert by any means, but I have 9 days under my belt and feel confident that I can share some information that might just benefit others...primarily those with autoimmune diseases such as MS.


The benefits of coconut oil are pretty impressive, I found several areas on the web that have listed them:
1. Coconut Research Center
http://www.coconutresearchcenter.org/
2. Universal Health Tips
http://universalhealthtips.com/coconut-oil-health-benefits.html
3. Forbes Nutritional Services
http://www.forbesnutritionalservices.com/?p=44


Anytime we try something new, our body is going to react. It is always a good idea to talk with your doctor about starting new regimens. With that being said, you know your body, so do what you feel is best. However, it is important to know what can occur when starting a new regimen if information is available. For coconut oil, something called "The Herx Effect" can occur, please read the list here:
http://www.earthtym.net/ref-herxheimer.htm


My personal experience...
I started out doing 1 Tbsp. coconut oil in a bowl of oatmeal in the mornings and within a few days was able to increase to 2 Tbsp. With 2 Tbsp. I would either put my coconut oil in a smoothie and drink it or add it to 2 packets of oatmeal in the mornings. For 3 Tbsp. I have been doing smoothies because I simply don't like the taste of it right off the spoon...but if you do, then I'd do it that way...seems much easier to me. I plan to stick with 3 Tbsp. for the next week before I increase to the maximum daily dose of 4 Tbsp. I just want to be absolutely sure my body is ready for the full dose and I feel that staying with 3 Tbsp. for a week is the best way to do so.


As for the Herx effect/detox issues...I haven't really had anything too major (thankfully). I think it was the 5th day (and was at either 2 Tbsp. or 3 Tbsp.) when I had an incident during the night where I woke up feeling really HOT and my heart was racing. This only lasted about 15 minutes and after moving to the living room, I was able to doze back to sleep. I had one day where I was peeing more than normal. I have noticed that I have actually been more hungry since starting the coconut oil...which might be a good sign that my body is wanting nutrients instead of just living on one to two meals per day. I was sick with a nasty cold when I started coconut oil and feel that it helped my body fight the cold better than if I hadn't started taking it. Another thing I have noticed...my underwear, pants & shirts are a little more loose than before I started coconut oil...I don't think this is weight loss because the scale hasn't shown anything, but rather GI reduction (which is consistent with my friend's findings).


I also noticed on the 8th day (3 Tbsp.) that I actually had a bit of energy...which is an absolutely amazing feeling after 2 years of feeling completely and utterly drained.


All in all...I am going to continue using coconut oil daily because my findings are too positive not to!


On a final note...a few suggestions:
1. Start out out slow when adding Coconut Oil to your daily regimen. Start with 1 Tbsp. and pay attention to your body. 
2. Make notes in a journal for easy reference.
3. Increase your daily dose by 1 Tbsp. per week until you reach the maximum dose of 4 Tbsp. per week.
4. Read "Coconut Cures" by Bruce Fife. This book also details the benefits of coconut oil. Here is the link:
http://www.piccadillybooks.com/coconut-cures.htm
5. Purchasing coconut oil - Purchase either virgin or extra virgin coconut oil. I bought Nature's Way...different brands are going to taste slightly different. You can either purchase at a local health food store or online in bulk.


Thanks for reading!!! Hugs to all!!! :)

Tips for preventing cold & flu...

As I mentioned in my previous post, I was going to do some research on my questions that were triggered from getting a cold. I found some great info on webmd.com about prevention along w/ an article on what doctors do to prevent colds & germs:
Tips for preventing a cold ~
http://www.webmd.com/cold-and-flu/cold-guide/11-tips-prevent-cold-flu?page=2


Article, How Doctors Avoid Colds & Keep Germs at Bay ~
http://www.webmd.com/cold-and-flu/features/preventing-cold-and-flu-how-doctors-keep-germs-at-bay


I also found a short article about preventing a cold from turning to pneumonia ~
http://health.howstuffworks.com/wellness/preventive-care/how-to-prevent-respiratory-infections3.htm


After reading all 3 of these, I think that there is some good advice here. However, sometimes you can do everything and still get a cold. Although, I think we all can do a little more in our daily lives to help keep colds away.


If you do get a cold, then it's time to take the best care possible of your body (ie. drink plenty of fluids, rest & take the appropriate medicine or supplement, always check with your doctor first).


From my personal experiences over the years...
Vitamin C ~
Before I was diagnosed with MS in 2008, I used to increase my Vitamin C from my normal daily dose of 1,000 mg/day to 2,000 & 3,000 mg/day when I felt like I was beginning to get sick. For me, it helped keep colds at bay or reduced how long I had a cold. Post diagnosis, I have tried 2 or 3 times to increase my Vitamin C like I used to and have found that it isn't good for me anymore. It actually causes near my brain stem & the back of my head (lower left)...which happens to be where one of my lesions is. Plus, it no longer helps keep the cold at bay. I would caution anyone with MS about increasing their Vitamin C because it is an immune system activator and since we have an overactive immune system already, it could trigger exacerbations. (this is my personal opinion as I have no medical background.) I do, however, take 1,000 mg/day still and that is my maximum.


Echinacea ~
I attempted echinacea many years ago and never found it to be effective when dealing with colds. Here, I caution anyone to do their research about herbal remedies. Make sure that you know all of the side affects & check interactions with any other medicines and/or herbs that you are currently taking.


Over-the-counter (OTC) medicines ~
As mentioned in the article about doctors, use sparingly. Colds are a pain in the behind, but you don't want to take stuff you don't need (which many OTC medicines contain). For my colds, my doctor always recommends Mucinex (blue box only due to interactions w/ other medicines that I'm on). I think Mucinex (or store brand version) is extremely effective for colds. I give my kids the Mucinex for children when they get colds...there are packets that they just dissolve on their tongues and they don't mind taking them, which is great, especially when you have a picky kid that almost always refuses to take medicine because it "tastes too icky"! However, there are tons of different medicines on shelves, just make sure to read the ingredients and only take what you need for your particular symptoms. If you aren't sure, it's always a good idea to check with your doctor or pharmacist for guidance.


Vicks Vapor Rub~
This always triggers a memory of my grandma...she would always put Vicks on before bed. Whenever we would visit, she would smell of Vicks when she gave us hugs before bed. I wasn't a big fan of Vicks until last year....my daughter had a cough that was problematic. We picked up a small container of Vicks and it helped a great deal for her cough. Last week when I got this stupid cold, I was so frustrated that I thought I'd give it a try myself. I used Vicks on my chest, just under my nose AND on my feet (covered w/ cotton socks)....and it actually helped a great deal within a few minutes. I was impressed.


Coconut Oil ~
I have a friend that swears by coconut oil. I have started to take it as a daily supplement and after 4 days, am starting to feel pretty good. I have read the benefits and am impressed.Coconut oil can be mixed in with your morning oatmeal, smoothies, used in baking or eat it right off the spoon. If interested, check out the benefits here ~ http://www.coconutresearchcenter.org/


Flu vaccination~
Okay, I heard on the radio that it is being recommended that EVERYONE get a flu shot this year. I know that my doctor gives me a lecture every time I go in to see him during the fall/winter months about getting a flu shot. Personally, I will never take a flu shot. I got a flu shot several years in a row (many years ago) and wound up very sick for 2 months after each one. Therefore, I'm not interested. However, I know others that get one religiously every year and do just fine. To me, this is a personal preference and should be discussed with your doctor.


I'm sure there are other things I may be forgetting, but those are the main ones I can think of right now.


Hopefully everyone can stay healthy during this cold/flu season. :)

Getting a cold while having MS....

Having MS makes everything more complicated!

We are coming upon cold & flu season. Well, actually, it has already hit my area of Colorado. My kids started school on August 18th and my son was sick starting 8/30 causing him to miss the only 2 days of school he had this week. By Tuesday night, I was sick too. As a parent, it is always a "roll of the dice" whether you will get sick when kiddos bring home the germs from school. However, as a parent with MS...it is almost a guarantee that you will get sick when they bring them home. Why?! Because your immune system is already wonky. 

My son was very conscious about washing his hands, covering his mouth, disinfecting the keyboard and felt really bad when I wound up sick too. I had to reassure him that it wasn't his fault. Yes, he brought it home, but that was probably a few days before he actually showed signs of being sick and there is no way to know until he was actually sick....and by then it is too late. 

For me, this triggers my curious mind to start pondering....and a rather odd visual of me walking around my home wearing latex gloves & a mask...

What can we do to prevent these seasonal colds and germs in our home?

Does this mean that I need to become a germophob (no offense to those that are) and fear germs and keep my apartment absolutely germ free?

What should I do to beat a cold so it doesn't linger for weeks to months?

What should I do to make sure that a cold doesn't get worse and turn into something like pneumonia?

How does having a cold affect MS?

I haven't done any research yet on these topics, but will probably do so in the next few days and post information over the next few weeks.

I don't know anyone that enjoys being sick and I can tell you from personal experience that having a cold AND having MS....is miserable!

For now, I think I shall go use my nasal spray, inhaler, mucinex and fluids...maybe even some chicken noodle soup and zone into a game or two on pogo.com before I lay down for sleep...with the hope that I can actually sleep without coughing all night.

Until next time...