Hi!!!!

Hey guys!

It’s been awhile since I’ve posted, like, a long while. I hope all is good out there in the WordPress world!

As for me, well, I wish I could say the same.

I’ve been gone from the blogging life because I’ve let myself become one of those crazy workaholic people. It distracts from the other things going on in life. It really does. Like my 5 year old niece being in kidney failure. She’s getting dialysis 3 times a week. She also needs a kidney transplant. So, yeah, it distracts. Don’t worry though. My niece is doing well with everything that is going on with her and she knows what is going on.

How is everyone??? Healthy, I hope!

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.

 

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

img_0644

“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.

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?

 

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!

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.

Extreme Heat & MS

As we’re soon to be hitting the near 100s this upcoming week on the East Coast; I felt this would be the time to discuss heat and multiple sclerosis.

shutterstock_133640705-771x539

“Studies report that about 60 to 80% of people diagnosed with MS show excessive sensitivity to heat. People with this neurological disorder experience a temporary exacerbation of their existing symptoms and also new disturbing symptoms when they are exposed to elevated temperatures. They are sensitive to even a slight increase in their core body temperature (0.25°C to 0.5°C) that may be due to physical exercise or a warmer environment.”. (Wlassoff, 2014).

What happens when exposed to extreme temperatures:

  • Fatigue is a common symptom and it is seen in nearly 70% of people with MS. Premature fatigue occurs in people with MS when they are exposed to even a slight increase in temperature. Weakness, especially affecting the limbs is also a symptom that is perceived during or aggravated by a temperature rise.
  • Central pain is another common symptom that worsens with an increase in temperature. Studies propose that the reason behind this may be the damage caused to the thalamus and the spinothalamic-cortical pathways leading to thermoregulatory dysfunction. Numbness is another symptom that worsens with rising core body temperature.
  • Cognitive functions in MS patients are also sensitive to heat. Memory problems, judgment difficulties, concentration difficulties and problems with other cognitive skills like language comprehension are more pronounced with the increase in body temperature. A recent study pointed out that people with MS demonstrated worsening of cognitive functions in warmer days.

 

Resource:

Wlassoff, V., PhD. (2014, September 13). How Temperature Affects People With Multiple Sclerosis. Retrieved June 10, 2016, from http://brainblogger.com/2014/09/13/how-temperature-affects-people-with-multiple-sclerosis/