To Me: Before the MS Diagnosis

This is to you.

Right now, you’re living carefree. These words that follow, are the things are the words you’re soon going to need to hear. The previous incidents of falling down and falling down stairs are not incidents of being clumsy. They were most likely warning signs of what was to come. You laughed. The genetic signs were there and it never crossed anyone’s mind- especially yours.

You celebrated being 22. The warning signs are there. Something’s brewing beneath the surface. Signs that shouldn’t have been ignored. You should have been informed about the MS symptoms. You shouldn’t have been brushed off by multiple doctors, it did more harm than good.

Always stay positive. There will be days that you want to give up on everything and everyone. Including yourself. People may act like they understand and you will want to push them away.

Always let someone in your life.

 

In the Past Year…

In the past year, I have learned that the RRMS diagnosis I received years ago will not define who I am as a person. It will not take away what I know I’ve become. It may have taken away friends or people I thought were my friends…but I simply will not allow it take away me.

In the past year, I’ve become more compassionate towards others. I know this because I worked at a local Salvation Army in my hometown and the impact it left on my life will last a lifetime. The phrase “do not judge a book by its cover” brought a whole new meaning to my life.

In the past year, I’ve learned just because I want something, doesn’t mean I have to have it. If I let that want go, if it comes back again, you find yourself questioning if that want was meant to be. Let it go… it will come back… I’m sure of it.

In the past year, I’ve learned life is too short to have hatred towards others. It really is. My family suffered dearly over the loss of my uncle. It is an emptiness I cannot explain. Please love each other.

 

 

Update! Update! Update!

It’s been awhile since I’ve left any kind of update or anything. I’ve been extremely busy and now that it’s the holidays…it hasn’t gotten any better. I figured I’d update everyone because I have the house to myself, afternoon to myself (and a glass of wine) and what the heck, it’s been awhile!

For starters, I hope everyone is feeling happy, healthy as can be and well, happy!  I look forward to catching up on your blogs!

Secondly, while I was away, I bought my first house. Something I’m extremely proud of and it was the right push into my 30s, I do believe. My sister and I are sharing the house together and her dog and my cat pretty much run the place! We’re out numbered!

Thirdly, I have been working crazy hours. Studying for my Masters and life has caught up to me. The MS isn’t coping with all of the working, but I’m trying to figure out a more relaxed schedule. Hopefully, something changes!

 

Happy Holidays!

Axon Optics Review

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

As a part of my RRMS diagnosis, one of the things I frequently suffer from is terrible migraines. This can be sometimes a curse, believe me, I’ve had migraines where I couldn’t bear to be awake. I’ve been in the ER and my primary doctor’s office because of these migraines. I was even told at one point that I may have to start taking a Botox treatment to make them go away. To be honest, I’m in my early thirties and in no way, wanted to go the Botox route.

If you follow my Twitter account (TheMSLife), many of you know, I’d often speak out about my migraines and how I was losing the concept of everyday life because I couldn’t simply take my pain. I was sensitive to everything you can thank of. Light, noise… caffeine definitely didn’t help. I finally realized that I was going to have to deal with my headaches, my migraines. It’s just the way it was.

Then came (luckily) for me, along came Axon Optics.

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I honestly wasn’t sure how this was going to work; in fact, it was the first time I had even heard about “migraine glasses”.  My sort of migraine glasses had always been the darkest pair of Ray-Bans I could find. However, these glasses did not work for me and I was so hopeful they would. They weren’t dark enough: I gave up and went back to my Ray-Bans to conduct myself outside or in the house even. They made me a little dizzy and my vision was blurry.

For someone who has Multiple Sclerosis, this made me uncomfortable. I was quickly aware of how these glasses could end up messing with my balance issues. HOWEVER, there were the times when I suffered a beyond painful migraine and I slipped the glasses on while at work. They do not differ much from my regular glasses outside of my contacts, and I felt relief instantly.

The bottom line everyone is wondering is “do these glasses actually work???” In my opinion, yes. I’d recommend them to anyone who suffers from migraines. Although they helped me on one or two different instances, they didn’t help me completely as I had hoped.

I definitely recommend anyone trying these glasses or wanting to try them to do what you think is best for you and your migraines. I hope they help others more than they helped me. They may work better. I’ve been a sufferer from migraines more of a medical natural for a long time and I was hopeful they would be a winner.

 

 

 

Monitoring Multiple Sclerosis

This post is on Bloglovin. After reading it, I decided to share with my followers.

ClinicSpeak: why it is important for MSers to engage with monitoring their disease?

Do you self-monitor? What works for you? #ClinicSpeak #MSBlog 
I am convinced that rheumatologists monitor and treat rheumatoid arthritis (RA) more effectively than we treat MS is because RAers (people with RA) are more activated and engaged with their disease. Granted active RA is more likely to cause symptoms, i.e. painful, warm and stiff joints, compared to MS were over 90% of the disease activity is asymptomatic. However, the fact that the RA disease activity score includes a PROM (patient related outcome measure) makes all the difference. Rheumatologists need their patients to score their disease before they can make a decision about treatments. We need to get to the same point in MS. Why? It is clear that as effective drugs for treating MS have emerged we need to have documented evidence of disease activity, for example, relapses and MRI activity to make decisions about starting, switching or escalating treatments. This is to make sure we are using the DMTs in the cohorts of patients in which there is evidence they work and that they are cost-effective. As DMTs for progressive MS emerge we will need to do the same for progression. There are two ways of doing this, i.e. to get your neurologists to make sure they do the EDSS, timed-25-foot walk and MSFC (MS functional composite) every 6-12 months or to start monitoring your own disease.
I have recently been contacted by a medical APP developer who wants to convert their APP into an MS monitoring APP. It is very appealing to collaborate with them because they have an existing platform. My worry is the design of the APP (not MS  specific) and whether or not it is suitable for MSers from a design perspective. I also have concerns about the business model. Someone has to pay for the platform, who is going to pay; the users (you), healthcare payers (NHS, insurance companies, etc.), sponsors (e.g. Pharma) or via advertising? Unfortunately, in the modern era, there are no free lunches.
I am aware that a lot of you are already tracking and monitoring your disease. I would appreciate hearing about your experiences and recommendations. Our time at Barts-MS is becoming increasingly more valuable, and I need to focus on things that will make a difference to be people with MS; we need transformational technologies and not another APP to a burden.
I have been pondering the idea of developing a 360-degree web APP, similar toTripAdvisor, called MSAdvisor. The idea is to use this platform to allow MSers, HCPs and MS Service providers to come together on one platform. There is nothing like a bad review to improve service provision. What do you think?
Source:
Giovannoni, G. (2016, October 10). ClinicSpeak: Why it is important for MSers to engage with monitoring their disease? Retrieved October 17, 2016, from http://multiple-sclerosis-research.blogspot.com/2016/10/clinicspeak-why-it-is-important-for.html

Honey Colony Superior Review

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“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Honey Colony Superior Cannabidiol Rich Hemp Formula

“Cannabidiol (CBD) is extracted from the Cannabis plant and has no euphoric properties whatsoever. This formulation offers all the health benefits of CBD without the feeling of being “high”. (Source: HoneyColony)

I received the Superior from HoneyColony approximately a month ago. When I received it, I was kind of skeptical at first to even try it; so when I eventually did take the Superior formula, I decided to take it at bedtime. This was before I read the entire label and realizing that I could take the formula three times during the day. When taking the Superior formula, the first dose was weird for me, mainly because you have to hold the formula under your tongue for some seconds before swallowing. The taste that stood out to me was a citrusy flavor. While writing this review, I’ve noticed a change in both my nighttime and daytime pain. As someone who works 40 plus hours a week, this is a relief. Also, the best part of it is that I’m no longer relying on narcotics for my pain during the day anymore. I like that the Superior is all natural and with organic botanicals.

My cons with this product are as follows:

  • Small writing on the label. As someone who wears glasses/contact lenses and has difficulty with vision because of Multiple Sclerosis; the label writing could’ve been slightly larger.
  • The taste isn’t bad, however, when someone close to you can smell it and is seemingly disgusted by it, they question why you’re putting it into your mouth.
  • A major con for me is that it is only available in the United States, Germany, Italy, Spain, Israel, Australia and the UK. So, if you want to purchase this product, make sure that you can have it shipped to your location.
  • The price. It’s $92.55 a bottle, which is a punch to the pocket. For three bottles, it’s $262.00, and that is registering as a current sale price.
  • “CBD and Drug Tests:  Unfortunately, it is possible for CBD to result in a positive for THC— much like eating a poppy seed bagel can cause a positive for opiates depending on the type of test. Our products contain .03% THC, well below the federal limit of .3%, but you should use discretion if planning to be tested.  (Source: HoneyColony). As for someone who is regularly drug tested at her place of employment, this is a reason why I’d potentially get fired. It’s troublesome to be advised to use discretion by the company.

 

My pros of the Superior formula:

  • It doesn’t need to be refrigerated and has a shelf life of 3 years.
  • It does not have enough CBD in it to make anyone “high.”
  • It’s completely organic.
  • It isn’t oil. Instead, it’s the only water soluble CBD in the market at the time of this review.

 

I’m extremely happy this formula has worked for me and the pains that come with Multiple Sclerosis. Living on narcotics has been a pain and hassle for me, so I’m glad the HoneyColony has developed something of this nature.

 

If you’d like to check out this product, go to http://www.honeycolony.com to check it out yourself.

I hope my review was an enjoyable read and will help someone find relief like the Superior formula has for me!

 

 

October 9, 2016

This blog post comes directly from my journal.

*12:18 AM*

I’m back to where I’m suffering from insomnia. Maybe it’s because I took a nap earlier today, I have no clue. I don’t know what is going to happen because I’ve taken myself off of all of my medications; even my treatment for MS.

*12 PM*

I don’t know if I’ll end up in a wheelchair, maybe I won’t. I know people talk about depression with this illness but at the end of the day- what isn’t there to be depressed about? If I didn’t have a job to look forward to, I’d probably suffer from major depression. I’ve tried to act normal and act like I’m not constantly in pain. The thing is: I’m not normal, and I’m always in pain.  I wish I could still shoot photos… I just can’t.

*4 PM*

I can’t go to the gym every day like I used to. I guess that could be a good reason to be depressed. I eventually could be depressed, if I don’t get some kind of normalcy back. If that’s even possible.

Step Forward in MS Research

Terry Wahls knows first-hand what the right diet can do for a person’s health and well-being. It’s been 10 years since she created the Wahls Protocol, a diet that helps her combat the fatigue and physical symptoms of multiple sclerosis (MS). Wahls, a University of Iowa professor of internal medicine, was confined to a wheelchair before she began following the diet she created to treat herself.

Terry Wahls, MD
Terry Wahls

The Wahls Protocol—a diet and supplement regimen based on a Paleolithic diet—led to a dramatic improvement in her mobility.

“In three months the fatigue was gone,” Wahls says. “In six months I was walking without a cane, and after nine months I was biking around the block. A year after I started, I did a 20-mile bike ride.”

Hers wasn’t the first diet designed to minimize the physical symptoms of MS; Roy Swank began studying MS in 1948 and created the saturated fat–minimizing Swank Diet around 1950.

Now, the National Multiple Sclerosis Society (NMSS) has awarded Wahls a $1 million grant to compare the two diets’ effects on multiple sclerosis–related fatigue, a disabling symptom that can significantly interfere with a person’s ability to function at home and work.

The grant is one of the largest financial commitments made by the NMSS to research this year. It is part of a projected investment of $50 million in 2016 to support more than 380 new and ongoing studies around the world aimed at stopping MS in its tracks, restoring patients’ function, and ultimately ending the disease forever.

“The National MS Society is committed to identifying wellness solutions to help people live their best lives,” says Bruce Bebo, the society’s executive vice president for research. “We’re very pleased to support a rigorous clinical trial to test the ability of two popular MS dietary approaches to address the disabling symptom of fatigue.”

Wellness and the strategies necessary to achieve it are high priorities both for people living with MS and for NMSS’s programs and research. For the most part, studies researching dietary approaches to combatting MS have generally been too small or poorly designed to provide definitive conclusions. This new trial will carefully assess the potential impact of diet on the fatigue—and potentially other symptoms—commonly experienced by people living with MS.

Wahls has been studying the effects of diet on MS for more than a decade. She was diagnosed with MS in 2000, and by 2003 the disease had progressed so much that she was confined to a wheelchair and feared she would be bedridden. In 2004, she says, she returned to her basic science roots and spent the next three years researching the effects of food and vitamins on the body.

In the fall of 2007, Wahls put her new protocol into practice, using herself as the first trial participant. Her protocol is a modified Paleolithic diet, which excludes grains, eggs, dairy products, legumes, and nightshade vegetables and places a heavy emphasis on vegetables, fruit, meat, and fish.

Within months, Wahls’ fatigue was gone, and she started walking again. Then she started riding a bicycle.

Wahls worked with other University of Iowa researchers to write up a case study of her own results, which they published in 2009.

“Our work has progressed from the initial case study describing the use of diet, exercise, and electrical stimulation in the setting of secondary progressive MS to a small pilot study using the same protocol that I used for my recovery in others with progressive MS, which was published in 2014. We saw the protocol was associated with remarkable improvement in function in others with progressive MS,” she says. “We were able to show that the program was well tolerated and was associated with clinically and statistically significant reduction in fatigue and improved quality of life.”

For the new study, investigators will be recruiting 100 people with relapsing-remitting MS who experience fatigue to enroll in a 36-week clinical trial. Participants will follow their usual diet for 12 weeks and then be randomly assigned to follow the Swank Diet or the Wahls Protocol for 24 weeks. Their health and activities will be extensively monitored during the study.

Swank created his diet after he observed a higher incidence of MS in geographic areas where people ate meat, milk, eggs, and cheese—foods that are high in saturated fat—and a lower incidence in regions that ate fish. He spent more than 50 years recommending this diet to his patients and monitoring their health.

Both diets have been shown to have a positive impact on patients with MS.

 

Resource:

Rossiter, M. (2016). Another step forward in MS research. Retrieved September 14, 2016, from https://now.uiowa.edu/2016/09/another-step-forward-ms-research