My story

Visit the contact page for information on how to get in touch.  Read about my MS story here. 

Welcome to Blonde Wonder Woman. I'm Tamara and I live in Alexandria, Virginia. In 2017, I retired from a sixteen-year career as a teacher due to having intractable chronic pain from Multiple Sclerosis.These days I spend my time seeking ways to be in my best health despite my diagnosis. Everything I do has a connection to better my odds against a sneaky disease that surprises me everyday. I try through nutrition, exercise, alternative treatments including cannabis, and disAbility life hacks to have a better quality of life with MS.

Cannabis was a last choice for me, but why I think it should be a first choice for all...

I joined the fight for legal cannabis in January 2018.  Somehow one thing led to another and I found myself testifying in front of the General Assembly in Virginia to allow CBD oil for MS patients and all other illnesses beyond the current legal restrictions for only Epilepsy. And then I testified again which was only my small part that led to a majority Republican Virginia General Assembly to vote unanimously in favor for the law change.

So, this is the story about how this anti-marijuana, 26 yr military officer's wife, Eagle Scout mom, middle school teacher who has Multiple Sclerosis learned that I was wrong about marijuana.

I had a major setback in 2017 in which the MS immunosuppressant drug I was taking to slow disease progression induced serious liver injury. My liver enzymes were seriously elevated. My AST was 1200 (normal range 10-40) and ALT was 1800 (normal range 7-56). I didn't have a clue that my liver could be failing. I just knew I didn't feel well.

So, then while I was in the hospital for five days, chronic pain that feels like charlie horse like muscle spasms 24/7 developed in my hands and arms.

When I discovered CBD oil gave me relief for my chronic pain from MS, I was out of options. Nothing before it touched my charlie horse like muscle cramps up and down my arms I had 24/7. I wanted to know more about how the CBD worked. 

In my research, I discovered the controversy that not all CBD oils are created the same. It was not clear whether it is legal in every state.  My curiosity led me to look up Virginia law to find that CBD Oil was legal, (yay!) but only for Epilepsy. It made me want to understand why it would only be allowed for one brain related disease and not another like MS. I felt a sense of betrayal and anger that the one thing that works in giving me quality of life was considered to be okay for only one illness.

I wanted to actually meet the people who fought for CBD oil to be legal in Virginia for Epilepsy to begin with! There was a new bill to expand the allowance to all other illnesses based on a patient's doctor. I told my story to committee members and the law was unanimously passed. There are so many people involved in this effort, I cannot take much credit for it passing. I am happy that I was able to do my small part to make it happen.

 

I have two sons who are young adults and did my job as a mom to warn them of dangers of drugs and thought smoking pot was for losers. But, it took a nearly desperate personal need for relief from the pain and trying all the doctors suggested unsuccessfully to be willing to try it. I justified that I was not smoking it and if it was just a snake oil, then at least I could say I tried it. I took a little of a light strength CBD oil under my tongue. The pain relief was and is life changing. 

I don't claim that cannabis in any form is a cure for anything, nor is it right for everybody. I still take FDA approved drugs for my MS, but I have been able to give up 6 medications that all have dangerous side effects. Some of these 6 drugs were to try to help the side effects of another and some I still need to take because one drug caused another problem.

Like another FDA approved drug that triggered me to develop Glossopharyngeal Neuralgia and my left vocal cord to be partially paralyzed. These side effects are so casually mentioned on the warning labels. The doctors and drug companies think nothing about these side effects as long as their listed for the patient to assume the risk. Throat irritation and upper respiratory infection were listed on the label, so it was no problem that I had a sore throat for 6 months and my left vocal cord was partially paralyzed. And we all as patients apparently assume the risk that all drugs can cause liver damage. So, this is all within the confines of what is considered acceptable in the medical world.

Cannabis helps with all of my pain, but there are so many differences in ratios of compounds in the different strains of the cannabis plant, plus method of delivery etc. in which I need the science to make sure I'm getting the best and safest medicine I can.

This is why there needs to be more research done on cannabis. It may be that one of the other 100 plus compounds in the plant I do not have access to in a certain ratio would be better than the drug I am taking to help the GPN now or even the progression of my MS, perhaps, but I don't have the ability to know. It just doesn't make sense to me that something that helps so many people is illegal and can't be researched to know these things when the drugs they freely give out to us causes damage to our bodies. 

So, imagine you find a medicine that works for your pain and then find out it is illegal for you to have. That's why I wanted to be a part of helping it become legal. When I joined a group of advocates in Richmond, Va, I knew I wanted to help any way that I could and really thought that would mean passing out pamphlets or something. I didn't know I would be asked to speak in front of legislators that day, but I surprised even myself. I was not nervous at all. When Beth Collins asked me literally as we were walking to lunch that day if I would speak, I said yes. Then, she asked if I was sure. I confidently said, "I got this! I was a teacher for 16 years" while I was screaming in my mind, "Nooo! What did you just do?" Nevertheless, I pulled it off because all I had to do was tell my story. That was easy. They must have liked what I said, because the advocate group asked me to come back and testify again.

Medical cannabis advocates working in Richmond, Va. - L to R: Karen Baker, Teresa Brogan, Me - Tamara Netzel, Beth Collins, Lisa Smith, Jennifer Collins. Front row: Haley Smith

To my amazement, this led to my being asked to join the advocate group in a follow up episode of Dateline on NBC documenting our journey to expanding the Virginia law from cannabis oils for Epilepsy patients to all other illnesses with permission from their doctor that would include MS. You can find the link to the Dateline on the home page of this blog.

Standing with advocacy group in the balcony of the Virginia
General Assembly when HB1251 was unanimously voted in favor.

The crew from NBC visited my home in February, 2018 to tape the interview with Harry Smith.

At the time of my hospitalization, I had trained for 8 months prior in hopes to run my first marathon. I have run 9 half marathons and a handful of 10 milers. I wanted to say I ran at least one marathon before my MS would prevent me from doing so. Well, not sure yet if I've retired that dream yet, but I definitely am thinking about it. Regardless, running itself will always be a part of my life. It's one of the things I don't think I could live without. It's therapy for me. And even if I run slow, I will still be a runner.The liver injury seemed to trigger my hand and arm pain I had once in a while to transition to constant preventing me from keeping up with my job as a teacher. I could not type or use a mouse without chronic pain. I tried many different treatments to ease this chronic pain that didn't work including nerve blocks and anti-seizure drugs. A friend suggested cannabis oil (CBD oil) that doesn't contain THC (the chemical in cannabis that gives the high). I tried it out of desperation and despite my doubts it would give any relief. To my surprise, it helped the pain enough that it was not driving me crazy. The numbness and weakness was still there, but this made me curious about cannabis and its potential for health. Curiosity allowed me to meet some experts and like most things I learn, I wanted to help others learn more. It led me eventually to joining others to advocate for legal cannabis laws on the state level in Virginia. I was a small part of expanding state law HB 1251 allowing more cannabis oil patients to get access.


I've had to retire with disability from my 16 year career as a teacher because of not being able to use my hands to type, but am able to use technology by using my voice to text software. MS is trying to make that difficult too as I now have a partially paralyzed vocal cord from Glossopharyngeal Neuralgia. So, I guess I'm gonna need someone to invent thought to text software if my voice completely goes!

Below are some of the highlights from my teaching career. I went on mission trips to Malawi, Africa coordinating related fundraising projects with my my sixth grade class in the United States.

One of my visits to Malawi, Africa with my church mission group. I'm holding a photo of the 100+ 6th grade American students who raised thousands of dollars to buy the maize mill pictured. The photo of my students now hangs in the building that houses the mill and provides a 24 hour guard also paid for by the money raised by the students.

The maize mill bought for the MBWatalika Village in Malawi, Africa by my 6th graders. A mill for this village means it provides the means for grounding a staple grain Malawians eat at all meals. It means the women of THIS village won't have to walk the typical 10 miles a day to get food prepared for their family and the village can make their own revenue by selling the grain to the people who line up to use it from other villages.

Me with my sponsored child in Malawi, Africa. 

I've always been passionate about helping other people. It was what I loved to do most in my teaching career that included my mission trips to Malawi, Africa. Leading my students to raise life-changing funds for a village there year after year. So, I hope my advocacy for MS and any treatments I share helps others saving others the time and hassle I had in finding the information. I created this blog to help others find information about how to be their best selves in general through the lens of Multiple Sclerosis as I learn this myself.