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!
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, 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.
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!
“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.
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.
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?