Girl with MS Support Group & BelongMS are here to help!

Help!   I definitely need extra support during these epic times.  How about you?  


As many of you know, my focus is Conquering MS with Self-Care.  Self-Care means a lot to different people but for me it represents a combination of awareness, education, action, and medical expertise.  As people living with MS, the need for social connection is essential in keeping us sane. At least it is for me!  


One of my most asked questions is “Do you use an app or other social media to help with your MS?” And the answer is Yes. 

I’ve used and tried different apps and social media outlets over the years and each has slightly different offerings and options.  After being shut down by facebook due to a hacker, (My story here) I knew I needed something more reliable.  

For my current life with MS, I have chosen BelongMS (part of Belong.life) to share my twenty years of experience to help others.   

We created a Girl with MS support group.  And it’s not just for girls. As a certified life  coach, nutritional educator, health journalist and someone living with MS for twenty years, we have stuff to talk about!  There are many tips and tricks and just over all support that will help us live better with MS. Will help us all say, #takeTHATms!  

  


And now we can chat directly via Belong.  Anyone with MS can join Belong and find tons of support, friendship, expert advise and even clinical trials. Once the Belong app is downloaded and you have registered (click here for app), then you can scroll down and see the different support groups.  Mine is circled below and is the Girl with MS.  Join me!  




The Girl with MS Channel is all about Self-Care.  We’ll talk about different ways to take care of ourselves, ways to find ourselves and ways to support each other.  



Because if I don't take care of myself, this is how I end up feeling:  

  

But when I do take those extra steps, those extra little measures to take care of myself like medical visits, and extra caution,



I can have days like this: 



I’m looking forward to “seeing” you on Belong and having a channel to talk directly with all of my MS friends out there.  If you already have Belong App, then look me up and let’s chat!   


MS is a challenge but together we’re stronger.  Together we can support ourselves with questions, answers, encouragement and laughter.  Together we can BELONG!    


And together we can say #takeTHATms! 



Cannabis Awareness, Pain Management & Multiple Sclerosis

 “The light whispering down the hall is enough to encourage a restless night.  Breaking sleep to use the restroom, my mind wanders, can comfort return long enough to fall back to sleep or will this be yet another endless battle of little rest and much tossing?” 

———  Journal entry, April 1, 2022.  

 

 

What does a pain-free life mean to those living with chronic illnesses like multiple sclerosis (MS)?  Or to anyone who suffers needlessly in pain while the body and mind try to figure out how to find peace? 




Chronic pain causes anxiety, loss of sleep and depression if not more.  It can decrease mental focus and moods may be altered as the pain and inflammation creep and ravage the body from within.  

 

The first response from doctors and health care professionals is often NSAIDS (ibuprofen, etc) and narcotics such as oxycodone and norco.  But maybe there are other options.  

 

The opioid problem is world known: too many easy-to-acquire drugs that can cause addiction and death. And do they really take the pain away?  

 

One option gaining steam in research and use is cannabis, specifically the CBD derived from a cannabis plant.  CBD is not mind altering such as its counter point THC.  





Click here to learn more about marijuana, hemp, THC and CBD.

 

I sat down and chatted with Todd Vanderah, PhD., of the University of Arizona Health Sciences. 

 

Vanderah has researched cannabinoids for more than two decades.  He says, “It’s unfortunate that the whole general population of cannabinoids fall under the biases idea people have about medical and recreational marijuana, because you can’t lump it all together.  Nature has made a lot of useful plants, from aspirin to chemotherapeutic to antibiotics, and there are things in cannabis that could be medicinally beneficial.”  

 

Read more About Vanderah and the Smoke around Cannabis: click here

 

Vanderah is a member of the UArizona Health Sciences Comprehensive Pain and Addiction Center.  

 

Much of his work has involved the endo-cannabinoid system within our bodies and how it interacts with the body, with pain and with cannabinoids taken internally.  

 

“Everybody has an inner cannabinoid system,” explained Vanderah.  “We produce higher levels of cannabinoids than endorphins,” and further explains that it is “a lipid type structure found throughout body.”   

 

Vanderah’s quest is to see how the cannabinoid system  is affected by pain – directly interacting with nerves conducting pain signal.  

 

“Cannabis works on inflammation by decreasing inflammatory mediators that promote pain.  It has an affect on the anxiety caused by pain. And it provides a reward pathway so that people say, ‘I feel ok’”.  


“The reward factor is when the euphoric feeling overrides the pain.  Cannabinoids provide this reward factor but not to extent as opioids.   When you feel the euphoric part you don’t feel the pain.”  


“There is a reward component so possibly there could be some addiction,” says Vanderah.   

 

He further explained.  What’s unique within the endogenous cannabinoids, are the differences in the ability to be produced.  There are genetic differences and sexual differences.  These differences were found in a small study on Migraine patients. 

 

Click here for Cannabis and Migraine Study.

 

There is much to learn about cannabis from sleeping issues, inflammation and pain.  Different types of cannabinoids work on different people.  It’s as snowflake as MS.  

 

Vanderah’s work focuses work on the cannabinoid, CB2, which tends to be on the immune cells, throughout the body and within brain and nervous system. 

 

The yin and yang of pain in body

 

Simply put:  Prostaglandins cause pain. Lipids cause inflammation.  Interestingly, these are very similar to endogenous cannabinoids in the body, which is another lipid system that limits the pain.   One causes pain, one eases pain, all in our own bodies. 

 

Vanderah said there is much to learn about CB2 receptors and the inner cannabinoid system.  Some people may lack CB2 receptors.  Or their bodies may have adjusted and changed over time.  Possibly the body produces less as one gets older Do people lack the CB2 receptors?  

 

People living with MS

 

It would be nice to know what happens to the cannabinoid system in people living with MS.  


 

I found the following quite interesting.  If a drug has an approved FDA medical use, then it is considered a schedule 2.  THC, is schedule 2 but CBD is schedule 1 as there had not been an FDA approved drug using it.  But this will change as a drug has been approved using CBD.  

 

The Senate approved to spend more money in research on medical cannabis.  We need to know what it does long term, short term and side affects.  People need to know the risk to benefit ratio so they can make formative judgements on their own.  

 

I am  so glad that the federal government is supporting research to learn more! 



 

“Did you know there are over 500 chemicals in one marijuana plant?  Imagine what can we learn,” Vanderah shared.  He is looking forward to bringing in more researchers to continue this work.  We all are!  

 

It regulates many things – The endogenous cannabinoid system.   I like to say, “It gets things in balance.”  

 

“Opioids can cause more pain in a way,” explained Vanderah.  “If we shut down all the pain, the body is still trying to tell us something.”  In my laymen’s term, the body needs to express it’s pain so as we shut it down it may produce more pain.  But the natural reaction of the inner cannabinoid system would not create more pain. 

 

If cannabinoids are present they act as an anti-inflammatory and reduce pain.  They can also decrease bone wasting as found in osteoporosis.   This is great to know!   

 

BUT We need more research! 


Research is a challenge.  


CBD is not federally legal.  Creating an MS model for preclinical trial is difficult.   

 

So, I think it’s time for us to start a go fund me for research in CBD and MS!    Watch this spot.  There is so much more information that I may be adding to this post.  


But it’s 4:20 on 4:20 so I’m off to post this blog and celebrate life! 


Thank you UA Health Sciences for all you are doing to help us live better!   


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