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A Little Care And Tenderness

Did you know June is boring Self Care month?

This weekend was the perfect time for me to practice Self Care, I say this loosely since not only was my attention span limited but also my energy. I took full advantage of some of what @makedaisychains had listed as some of the Boring Self Care rituals.

Her list spans from taking a shower, doing the dishes and remembering to breathe. I don’t know about you, but the last one is a good one! There are countless times where I have had to literally remind myself to breathe. Does that happen to you?

Its almost as if you are waiting for your body to throw something else at you or for someone to respond negatively towards you that you literally hold your breathe as a defense mechanism. Am the only one here? Bueller?

 

Anyway, like I said I did some boring self care this weekend and shared a little bit below, but what I’m really excited about is the list I found below

 

Saturday- I took a shower. The shower took everything out of me. I had to take a nap afterwards due to the amount of energy it took. But, I took one! Not a year ago I would of forgone the shower and stayed in bed staring at the TV screen. After my shower – induced nap I felt a little bit better. I was clean and had somewhat of a rest. I made it out to run and errand and get chipotle to eat, but that was pretty much my day. Shower, nap, errand, eat, go back to bed and sleep. I guess my GTL days are over.

 

Sunday- I Did the dishes and made a meal – sort of. I definitely did the dishes and loaded the dishwasher. I had a little lot more energy Sunday compared to Saturday. I was able to go to the market and get groceries, something I would have had Instacart do not too long ago.

During one of the many breaks in between cooking, I did some perusing on the internet about what others were doing for self care month or in general. I came across a great list on a website called uncustomary.com – Check it out when you get a chance. Anywho I thought the list was something that we could all use, whether you are a Spoonie or not. I’ve listed some of what I found on Uncustomary and also listed a few of my own.

  1. Ask for help- how many of us actually do this? I know it is, and has always been really hard for me to ask for help. This didn’t come with MS, this has been a struggle for years.

 

  1. Make a Self Care basket- THE BEST IDEA. Fill it up with comfy socks, a heating pad, favorite movies, essential oils ( my go to is frankincense), a journal, and a pink mug for tea, water, or wine)

 

  1. Appreciate the body you have, not the body you had – speaking to the congregation

 

  1. Find Dr’s or Specialist you trust- I cannot stress this enough! You have to trust the people that are treating you, if not then what’s the point? Make this a priority!

 

  1. Acknowledge that you will have horrible very bad days. Its okay, its part of it – ride the wave -Because they will always end, and then you’ll have amazing very GOOD days.

 

  1. Treat your energy like currency- can you physically afford this? If going to an event will take everything out of you, and maybe take from the next day(s) its not worth it. Tell them you cant go and don’t beat yourself up about it. Shit happens.

Which brings this to the next one

 

  1. Keep only those around that “get it”. What do I mean by this? If you have people in your life that make you feel like you’re hard to love, or make you feel like you’re an inconvenience tell the bye!

There’s nothing worse than walking on eggshells with people because they either don’t understand or care to understand what you’re going through. It’s their problem and not yours show them the door, close it, and then keep it closed.

#Feliciabye

 

  1. Find something to believe in, I was Christian before my diagnosis, but didn’t really start having a relationship with Jesus until after my diagnosis. My relationship with him definitely makes the hard days easier and sleepless nights not as horrible as they could be.

 

  1. Make a routine- I know it can be difficult, its something I struggle with, but it makes things easier. Even if it’s just a routine for the morning when you wake up. Having control of that little bit of your day helps the day go by smoother- try it. I promise you won’t be disappointed. And if you are, all you risked was a morning.

 

  1. Make goals and keep dreaming- Just because you were diagnosed with something doesn’t mean your life ends. It could just be the beginning.

 

  1. Drink Water – Seriously, we are made mostly of water so rehydrate your self! Your body will thank you I promise, and you’ll probably feel a little better once you do.

 

  1. Share your story- I was reminded by a lady today that if you have a testimony your praises become stronger. And we all know you can’t have a testimony without a test. So go through it, do your best everyday and share that story! You never know who you could be helping by sharing your truth.

 

 

For more comprehensive list check out uncustomary.com

 

 

 

 

 

 

 

 

 

 

 

 

 

Stop In The Name Of Science?

In my two long short years of having MS I have been on two different drugs. Mainly because I decided to quit my first drug, why you ask? I’m a rebel.

Really, I was just tired of sticking a needle into my then, very fit body. So, after give or take 6 months of stabbing myself I decided this isn’t for me, said good-bye to the needles, and hello to drug free existence. It was great, at first. But 6 months of trying everything other than drugs, resulted in me shuffling into my Dr’s office, and him swiftly prescribing what I’m currently taking, Tecfidera.

Not a year later I came across a study and thought I would share.

Here’s the deal. A study was done where a group of people with Secondary Progressive Multiple Sclerosis, and Relapsing Multiple Sclerosis were taken off their DMT’s, (Disease Modifying Drugs). For those of you not in the know, or that might need a reminder – a DMT is what is needed to help those with MS help live their best lives. The MS center at Wayne State University defines DMT’s, as a drug that can modify or change the course of a disease. In other words a DMT should be able to reduce the number of attacks and/or also slow down the disease from progressing. [1]

 

Currently there are 15 DMT’s on the market with many still being tested and tried. There’s even a study going on in Canada using an antibiotic originally used for acne now being used for Relapsing Remitting MS, more on that one later! Now before you start fantasizing about your soon to be drug free life, lets talk more about this study overseen by Gary Birnbaum, MD – a MS specialist in the Minneapolis area.

“In most people with RMS, patterns of disease change over time. Acute Inflammatory changes, manifested as new lesions on central nervous system (CNS) magnetic resonance images (MRI’s) or as clinical relapses, decrease with an associated decrease in acute inflammation pathologically. There may come a time when an individuals disease no longer requires medicate to control acute inflammation.” [2]

Pretty interesting stuff huh?

Who participated?

All participants were under the care of Dr. Birnbaum at time of study.

The ages of participants of the study spanned from 49- 61, the majority being women, and were separated into two groups. 77 patients were in Group A, which consisted of patients whom had RMS previously but showed no acute CNS evidence for 2- 20 years and were asked to stop their DMT’s. And 17 patients were in Group B – that consisted of patients currently with RMS who voluntarily discontinued their DMT’s.

Both groups were scheduled for MRI’s, and clinical evaluations for 1 year after cessation of drug use. The minimum was 1 year of evaluation after cessation of drug use.

How was it measured?

In order for acute disease to be considered reoccurring there had to be a change, either on physical examinations or from MRI’s. Physical examinations if new symptoms that could be characterized as MS symptoms would occur – i.e. lasting longer than 24 hours without any evidence of virus, etc. MRI- detection of new lesions from imaging.

It should be noted all participants used the same imaging machines and their scans and all scans were looked over by the same neurologists.

Those that showed either of these characteristics were offered their DMT drugs.

And the winners are?

Group A, who now have Secondary Progressive MS, had a 11.7% recurrence of disease, with some having clinical changes and new lesions showing on the MRI, others although stable also had new lesions

Group B, who are Remitting MS had a 59% recurrence within 1 to 2 years of stopping DMT’s.

From this study we can gather disease progression makes a difference, but can age? If should be noted that participants in Group B were younger than the participants in Group A. So in answer to the question, in this case, yes it matters.

Older individuals, with no clinical or MRI evidence of RMS for 2 years or greater can stop taking their DMT’s with a very high chance (90%) of non-recurrence. This and other studies show that people who have RMS number of relapses over time diminish, along with MRI manifestations of lesions. Another interesting fact is that in most autopsies of older patients with MS show almost no signs of acute inflammatory changes, or lesions, according to pathological studies. But I’m getting off subject. The study came to the conclusion that it could be safe for older patients to discontinue their DMT’s if there are no signs of acute central nervous system inflammation for 2 years, without fear of recurrence of disease.

Whether you decide to stop your meds or continue to stay on them it is very important to seek counseling from your doctor. If you don’t currently have a doctor, the best place to start is with the NMSS.

 

 

 

 

[1] http://mscenter.med.wayne.edu/pdf/disease_modifying_therapies_for_ms.pdf

[2] Birnbaum, Gary,MD. “Stopping Disease- Modifying Therapy in Non relapsing Multiple Sclerosis, Experience from a Clinical Practice” International Journal of MS Care 19.1 (2017): 11-14 (Print)

World MS Day

 Hello, and Happy World MS Day!

I figured that in honor of this day, I would share some of my favorite websites, people to follow, and activities in the Houston area. This amazing list has helped me navigate my life with MS – which I’ll be honest can sometimes be crazy, and not always in a good way.

So.. Without further ado my list, along with commentary, is below.

 

Ms Connection – Must have information

NMSS – Must have information

MSAA  – Must have information. I mean there’s a program that cover MRI’s, making them, like, free*… Do you know how much an MRI costs? Okay then, check it out!

Girl with MS – Natural healings

Paleobosslady – Natural healings

Tripping on air – Because I like to laugh, out loud

Stumblingprincess.com -Inspiration – she has MS and does cross fit – which I am mostly convinced is snake oil – but I mean… she’s got it going on!

The Mighty – Different stories from different people, you might cry.

MSFit – Lets get physical, physical… no snake oil here but you will walk out feeling like a badass. Okay!

HealGirl – This woman battles MS and fibromyalgia and is such a beast

 

And last but, not least Houston Self Help Support Group.

 

Dontmsmesgrland – Lead by Veronica Lewis Daniels – has great speakers and is always spreading knowledge that is so needed.

 

I hope this list helps you or a loved one. Lets keep spreading awareness and Kiss good-bye to MS!

*must qualify

A Special Thank You!

We at Dontmsme would like to give a very special THANK YOU to all who rode, donated, volunteered and supported the MS150 this year! Also, a Thank You to those who watched us on Periscope! I hope you enjoyed watching as much as we enjoyed filming.

We met so many amazing people along the way, and feel so very blessed that we were able to attend and do what we did. Riding has been firmly placed on our bucket list!!

If you weren’t able to watch us live, or would like to re live the moments you’re in luck! We put it all together for you in two nice little packages here  and here. Day one and Day two, just for you!

Be on the look out for more events to come, and definitely look out for us next year!! We plan to make this an annual thing!