When MS Drugs Go Wrong

I started Copaxone in May. At first, the idea of giving myself an injection 3 days a week was not going to be my cup of tea. Sure, I’ve taken and given myself allergy shots before this drug, but it was only once a week. I shouldn’t have really complained, I was happy that I was starting any kind of treatment.

Up until recently, the drug was working well and I had no problems with it. Then, last week, when I gave myself an injection, I automatically couldn’t breathe. As someone who also suffers from Asthma, my first instinct was to grab my inhaler and see if that would help. It didn’t. I thought I was going to die.

Turns out– I had a rare reaction to the drug. My neuro suggested I skip the following injection. I have not taken it since the reaction.

Anyone have any suggestions on what I should do or even, what I should look to take besides the injection?

 

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

Updating 

I’ve been MIA and I’ve noticed a few things…my Twitter page has had an increase in followers and I’m grateful for that. Also, Copaxone is not making a noticeable difference and it’s been like 4 months.

I’ve been working crazy hours and trying to survive the heat. unfortunately, my life has become being extremely exhausted. I hope something changes soon because I’m aware that a lot of MS patients are unable to keep a full time job after their diagnosis.

Hope all is well in the WordPress world!

Serial Killer and His Child????

First of all, ¡Hola! It’s been awhile since I have posted. Sorry about that. I started a new job and it’s taken up most of my time. That and football practice is here.

Secondly, as you can tell by the title of this blog, it’s not about an MS update. (boo, I know).

Most of you know I’m a Grad Student and my major is Forensic Psychology. I get to student different topics, most are interesting. Most topics make me want to beat my head off of things (Assessments are important…but learning about them are borrrringgg).

So about my title: I’ve been writing my final project about the infamous Ted Bundy. We had the choice of picking anyone we could do a psychological profile on. (Someone chose Kevin Costner’s character, “Mr. Brooks”). I was going to choose Freddy Krueger. Sounds interesting, huh?

Here’s what I learned from unlocking the mind of Ted Bundy. Never and I mean NEVER dive into something you are unprepared for. I thought I was. I wasn’t. I’m still working on this paper (that’s due today).. and I’ve suffered nightmares, being scared shitless to the point I walked around my house in the middle of the night- making sure the doors and windows were locked. Keep in mind these murders took place over 40 years ago. It was the fact I let myself enter into a mind frame I’ve never been. I’ve seen well over 200 crime scene photos. I’ve wondered why he slipped below the radar for so long when there was so much blood. Then I reminded myself:

It was over 40 years ago. There was no DNA. No computers like we have now.

Here’s the kicker of my post.

Around 1982: Ted was sitting on death row as a married man. In October of the same year, he became a father to a little girl. (Some real karma right there). What blows my mind is that Ann Rule states in “The Stranger Beside Me”, guards were often paid off so inmates could have conjugal visits in a broom closet. How romantic. And that’s how the little Bundy came about.

However, his wife was in denial about his crimes. She changed her tune by the time the child was around 6 and changed her name and the child’s name. They’ve disappeared. The only person that seemed to know where they were was Rule, and she passed away in May of this year, I do believe.

What I don’t understand is that even changing this child’s name (if she was even Bundy’s child-I’ve seen a picture, there was a resemblance of him in her at 5), at some point that kid is going to realize whoever she was calling “Dad” growing up wasn’t her dad. At some point her mother (Carol Anne Boone), would’ve had to explain to her- I’d assume, that her actual father was an infamous serial killer, right? Or maybe she just kept it to herself.. not wanting that guilt on a kid. But whatever genetic issue Bundy had could’ve passed on to her.

All I think is that somewhere in this country is two generations of Ted Bundy wandering around…(wide eyes)

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The Fay Farms Rejuvenation 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 someone who suffers from Relapse-Remitting Multiple Sclerosis (RRMS), like most people, I am often looking for ways outside of medication to end my pain.  Whether it be Epsom salts or lavender baths; or muscle cream- I am always trying something. Living with MS, I know reading this, you think you have tried everything out there, believe me, I am the same way. At one point, I was approached to try Botox injections in my legs.

One day, I got an email asking if I would like to try The Fay Farms “Rejuvenation” Lotion and I thought to myself “like this is going to be any better than any of the others.” Let’s be honest here: what would you think if someone wanted you to try an organic lotion for your aches and pains? Would you actually believe that it was going to help after all of the non-success of the other attempts? I have suffered from RRMS for 10 years and quite honestly, I didn’t believe that I was the right candidate for this particular lotion.

The Rejuvenation Lotion contains CBD oil. And not to turn my post into a chemistry lesson that I’d probably confuse you and myself on: CBD oil is one of the cannabidiol oils that are in medical marijuana. This is one of the items that relieves pain but does not give you the high like marijuana. That would be THC.

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When I first received this lotion; the first thing I noticed was the familiar smell of black licorice. I’m not a big fan of the candy, however, found this smell very calming and soothing.  For 8 oz, you get a fair amount for $20; my favorite aspect of the bottle is the pump top. This makes it easier to use and easier to keep clean as well.  On the bottle, it says it is for “deep muscle and joint relief”. I have gotten into the habit of using this after a shower and after yoga or ballet. And to be honest, I haven’t used it that long, so I don’t know if it is making an impact on my muscles yet; however, I do know it does relax me after using it.

I do know that after using it for the past couple of weeks; I will be using the other products listed on the site in the near future. I know not everyone feels easy and ok with using items with CBD oils in it; I can tell you, by word of mouth I have interested others in buying it.

Hopefully, my review can interest you, the reader, into doing the same.

Go have a look at http://thefayfarm.com/p/cbd

You can also find The Fay Farm on Facebook https://www.facebook.com/TheFayFarm
and on Twitter. Twitter.com/thefayfarm

You can also find me here and on Twitter at @TheMSLife

 

 

Uncomfortable Pain

I haven’t blogged for awhile. Minus the post from a few days ago.

My MS is keeping me homebound; 91% of the time. Since Monday my left leg has turned into what feels like a block of cement. I’m pretty much in a slight state of depression over this. I walk and feel nothing but pain. I want to cry, but I can’t. I’m dragging around my leg and I know people are looking at me, so why go outdoors? Why face the stares?

I have to. Because I do need to make a living while I still can.

Sigh.

I Am Jazz

Firstly, I want to say I am a strong, avid supporter of the LGBT community. Many friends and family of mine are a part of this community.

Secondly, I do not normally watch reality television. I think it’s ridiculous and a waste of time.

On to my post.

Around a year ago when I first heard this reality series was going to air, I read an article about it. And I thought. “Okay. Maybe the world would wake up and realize that people don’t choose to be transgender. Here’s a perfect example of a child that is going to change minds.” Well, I tried to watch the first episode and kinda lost interest fast. (Like I said, I don’t do reality tv. I can’t.)

Today, I decided “hey, let’s try this show again.” My mistake. I watched 3 of the second season’s episodes. And as a psychology graduate student, I’m seriously bothered by this family. Just… I don’t know what to think. Maybe it’s the editing???

  • Episode 1: Jazz and her mother are wanting to confront the Liberty Counsel. When that backfires; they are confronted by members of the public. Her mother (Jeanette??) makes a statement that bothered me “Drag Queens like to dress up, but don’t have an Identity Disorder. Jazz does”.  So, she speaks for the entire Drag Community? She has no idea if they are suffering from an identity disorder. NONE.

This season seems to from the fear that Jazz suffers from depression and if she doesn’t get a hormone blocker she will go through male puberty. I completely understand that a transgender teen would be terrified of this. However, in this family’s eyes and Jazz’s eyes, being “male” seems like it is a sin or a terrible thing. It makes me wonder if this is a sign that if Jazz really was born a “female in a male body” as they claim or something else is going on here.

The mother has problems. She focuses on one child and seems to forget she has three older children. The oldest child is frequently absent and even states in the first episode “I don’t come home often…” And someone else says “It’s because of the drama” as the reason why the oldest daughter stays away at school.

In this season, a transgender friend, Noelle, becomes a part of the show, and Jazz tries to understand Noelle’s life… but she’s glad she was “so lucky” to transition early. And that her friends need to put themselves in Jazz’s shoes. No, Noelle is going through a normal transgender teen’s life. Jazz, on the other hand, is living the life of a privileged child’s life who couldn’t possibly understand Noelle’s life if she even tried.

I don’t know what is going on with this show…. but something’s terribly off with it. I don’t care if you agree with me or not… but I’ve been around transgender teens and transgender folks. This show is off base. I keep finding myself wondering if this mother just didn’t want another son… and that’s what happened her.

This show is off base.

 

 

 

Absent Father: This is For You.

To my Absent Father,

It’s been almost 18 years since you walked out that door while we were sleeping. Yep. 18.

I’ve often wondered if you’ve even wanted children. I’ve even put all the blame on myself. Why is that, you may wonder?

Being the oldest child, I am the reason why you were forced to stick around. I am the reason you gave up everything you wanted to be. BUT. I never asked to be here.

I look back at all of the times I protected my siblings drunken nights and the abuse you put on our mother and I realize now… I’m glad you left. I’m glad you never looked back. Even though we struggled and believe me…. we struggled. We cried. We hurt. We were always better without you.

Always.

So if you ever wonder if we think about you on Father’s Day…

Don’t.

Because here’s your answer.

We don’t. We haven’t thought about you since the day you walked out of our lives.

Mental Health.

mental health shutterstock

Mental Health.

I feel like this post is way overdue.

Mainly because I know everyone at some point has struggled with a mental health problem in their lives. With the passing of Robin Williams two years ago, there has been more public acknowledgement of mental health issues. Why am I addressing this in a post?

Well..

There is a reader who follows me and I follow them… who is struggling with a mental health issue. I’m not sure if they are aware if they have a mental health issue. What I do know is that they feel alone and they feel trapped in their head. I know they feel their blog is their escape from their mental illness and reality. They feel not a single person in their life understands.

I want this person who may be reading this post to see this and know:

I understand.

You are NOT alone.

Six years ago, I was right where you are, right now.

I felt like no one understood. I felt like I was alone. I was drowning in everything. I was on the verge of leaving everything behind.

I had a note.

I was a risk to myself.

For all I know, I was a risk to others.

But I knew I had to ask for help. That I was aware of.

I was at rock bottom.

I asked for help because I didn’t know what else to do.

Now….

I still have my struggles, but I am back to where depression does not have a hold on me. I am whole again.

Ask for help.

Talk to someone.

You are not alone.