Why do I want to have access to Medical Cannabis or Medical Marijuana?

Medical Marijuana, YES, I said it.

Yes I too have stereo types about all of the negative connotations connected to the words Pot, Marijuana, and all of the other terms.. Cannabis is the term people seem to be more comfortable with..

I’ve been doing a lot of learning this year.  A lot of research and reading of articles linked to studies, and testimonials.

How I learned about Medical Cannabis.

It was just over a year ago, the same time I was in training with Duke my current Service Dog and Fur LOVE of my life.

Haley’s mom, Jill started talking about it. I don’t remember what she said except that it shocked me that she wanted to give Medical Cannabis AKA “Pot” to her daughter.

I had never heard about Medical Marijuana before.

In fact I only knew what I had heard about it, that it was one of the worst substances on earth. Addictive, harmful, and illegal.

All of the stereotypes started to go through my mind as this soccer mom spoke. It made me start to question what I had been taught.

She wasn’t stoned, she was super smart, she wasn’t dirty, she was impeccably clean and put together. She was well spoken, she kept talking about this Cannabis which was saving people from epilepsy, stopping their seizures, saving their lives. She talked about oil.

She talked about all of the medications that Haley had failed. How Haley’s seizures were so frequent and so dangerous. She cared desperately about her daughter, her husband Art agreed and was completely supportive of getting this for his daughter also.

I became friends with her on Facebook and every post she shared, I would read.

She shared posts multiple times a day about the seizures that Haley was experiencing. Each time you read she had another one, you wonder is this going to be the last one that Haley’s body and brain can take? She has hundreds of them. She is a  Dravet child.

I can’t imagine the fear Jill and other mothers go through every time their child has a seizure. Wondering if they will still have their child after it is over, or if they fall will they get any further damage?

Jason went through this after my accident, my migraines and body pain were so severe, I couldn’t hold my head up with out support even then the pain was extreme. The best for me was lying down propped up by pillows the medication I used to help with the pain was Fentanyl in a lolly pop form. It was the only way I could tolerate pain medication other than IV. Since my stomach was already so sensitive to medications and foods. The migraines were intractable no medication would quell the intense pain and agony they put me in. The Fentanyl at least took the edge off, I still couldn’t sit up with out support but I could at least get a bit of relief.

I would get 2 hour to 12 hour breaks between the migraines, rarely I’d get a day. These times were glorious. I could think a bit then at least. Otherwise, I couldn’t, I would just lay there and pray for it to be over. Jason would come hope and check to see if I was still alive. Fentanyl can be fatal. Going through that every time you enter the room your wife is in, year after year, takes a toll on a person.

I’ve done everything with in my power to get better, be healthier, reduce pain and get proper diagnosis.

I’ve learned that the medical professionals do not have all of the tools and education or time that they need to deal with patients like me. People who do not have the typical illness or issue.

I’ve tried piles of anti-convulsants, combined with my pain medication, and all of the different migraine medications.

What has helped? Extreme Diet Therapy (Ketogenic), Isagenix Food and Supplements and Cleansing, DoTerra Oils

My first Service Dog could detect my migraines before I could tell I was getting them, this allowed me to get my medication in time and allowed me to stop some of them with drug cocktails.

These days, well, I get less migraines due to my changes, I also have less pain as well. If I were to stop this, my body goes back to having more migraines and being in greater amounts of pain.

I can do more, be out of bed more, and participate more in life.

However, I still spend days in bed or on the couch.  When I don’t catch the migraines fast enough or I don’t have enough migraine medication due to insurance limiting the amount I can have, I have to stop sleep and ice my body.

It limits my driving abilities, it limits how much I can do, and my body is still continuing to fight off the pain and migraines.

I believe that through the articles, research, and testimony’s that I have read, that Medical Marijuana Oil would be my best option for living an even better quality of life.

I would like to continue to take less pain medication, less muscle relaxer medications, less nausea medications, and less migraine medications.

Due to what I have read, I believe that this would be possible with Medical Marijuana, I also believe it would help my stomach issues, my digestion and absorption issues, and allow me to have clearer thinking.

While my PTSD is much better than it was I believe I would also receive benefits for that as well.

It would cause me less harm and would cause less damage to my internal organs that my current medication cocktail.

Our own Federal Government of the United States has had it proven in court cases and research, also holds patents on it.

An EXERPT from my friend Carol’s Speech that she gave before the Judiciary Committee yesterday.

“It is well documented that cannabis oil offers great promise for kids with Dravet’s syndrome, and for pediatric brain cancer. Studies out of Israel have demonstrated it’s effectiveness for Crohn’s disease, and as someone suffering from inflammatory bowel disease, I think it should be available to adults as well. My husband suffers from muscular dystrophy, for which there are no medical treatments other than to keep him comfortable with pharmaceuticals. I think medical marijuana should be available to him and others like him.”

Here is the news story that I was featured in on the KLKN Television Station in Lincoln Channel 8!  Duke is in the clip too!!!

 

Tonja and Service Dog Duke

 

 

 

MY SPEECH

Thank You Senators for taking your time to consider better options for Nebraskans.

I am a Nebraskan. My name is Tonja this is my service dog Duke.

I have never used Marijuana medically or otherwise, in fact, my entire life I thought that it was this leaf that was what people used.  I have been educating myself about this medication for the past year, when I met a girl with intractable seizures whose mother told me about the potential of marijuana.

I have been prescribed the same medications, as those with seizures to no avail, I use a typically epilepsy prescribed diet to eat.  I do not have epilepsy, I have a Traumatic Brain Injury’s due to multiple concussions, Genetic issue called, Methylenetetrahydrofolate reductase (MTHFR) is the rate-limiting enzyme in the methyl cycle, and it is encoded by the MTHFR gene, Ehlers Danlos Syndrome, an uncontrolled migraine disorder, painful digestion issues, allergies, and fibromyalgia, PTSD, and other issues.  (( I didn’t add the link to my blog in the talk I gave, http://pinkdoberman.com/abouttonja/  ))

I would like legislation allowing CBD oil at the very least to be available by prescription, I would also like consideration of CBD combined with higher THC to also be available.  Let me tell you why.

At the risk of alienating each of you, the conditions I have are currently under narcotic care, in fact in addition to narcotic medications, I have to combine muscle relaxers, migraine medications, and nausea medications, back to back many times, and then continue dosing of all but the migraine medications to control the pain.

I do this in addition to Diet Therapy which consists of eating a Ketogenic diet and a diet rich in food supplements, cleansing and vitamins. This has been at my insistence and not my doctors. My doctors however fully support what I am doing and are now recommending what has benefited me to others.

I keep researching on my own because the medical community does not have the time or resources to spend hours upon end on the rare combination of issues that plague my everyday living.

For years under medical doctors care I was in bed unable to hold myself up for any normal period of time. I have tried seizure medication after seizure medication to no avail, the only thing I got were vicious side effects and the feeling of having every set of senses I had be muted and dulled, I was in a fog.

Due to my digestion and stomach issues, the medications I can tolerate are limited, having a history of bleeding ulcers, I must be very careful.

Many times before adding the diet therapy I would land in the hospital emergency rooms sometimes two times a week, where I would receive fluids and additional narcotic medications to control the pain, in high enough doses that they were amazed I was still awake in pain let alone breathing. Sent home many times still in agony.

My husband would come home from his 24 hour shift as a firefighter to check and see if I was still alive.  He’d hold his hand above my face to feel my breath.

At night I still moan and cry out due to the pain, when he sleeps with me he wakes with every cry I utter. The quality of sleep he gets is horrible.

My NeuroOptometrist who was able to diagnose my brain injury, wondered how I had made it all of these years without committing suicide.  I was a puzzle he sought to help.

While diet therapy has helped me have a great deal more energy, it has also helped to take much of the swelling and pain my body had and allow me to do more, including sit up longer, and walking more. On my bad days I use a mobility scooter along with my Service Dog Duke, on my good days I just use the services of Duke.  Duke is my Second Service dog.

People like me do not fit in a box. But we also do need help.  I need to take less damaging medications.
I want access to medical marijuana, because it will likely mean gaining control of my migraines, minimizing my pain, and increasing my productivity.

I have been fighting to work, 5 years ago I was turned down for help by a Vocational Rehabilitation Counselor, I have fought to educate myself on my husband’s dollar, I have started a business with his support, and finally a couple months ago I was accepted for help by the Commission for the Blind and Visually Impaired.  I have yet to receive any services, but I continue to fight for my right to be Equal Before the Law and do my part to contribute to my family.

I have considered moving to Colorado so that I could continue to improve my medical and health situation, gaining better pain management and neurological tools through medical marijuana.

I know the feelings of wishing to die every day with every agonizing breath. I am here today not just for myself, but for these children, and for these adults who have various issues that are not able to thrive under today’s pharmaceutical and medical current state of availability.

I am capable to take these matters into my own hands. As I have done with my own diet therapy, managing my pain medications in conjunction with my doctors, and being a responsible patient.

I am the ideal candidate patient, who follows through and exceeds expectations. All I need is the opportunity.  All I need is to be given access to try this method of medication with my doctors guidance.
My doctors believe in me and believe in my ability to improve myself, they listen when I share ideas, and they are responsive to my needs and empathetic to the plight that they can do no more for me.

I am not willing to lay down and stay quiet.  My voice is speaking for the countless others who cannot afford the route I have traveled, my husband has worked endless hours at countless jobs to insure the care I have is the best I can find. We don’t have a pretty house, the clothes I have are either from before this started or from second hand stores or given as gifts.

What I do have is courage, the ability to involve others, to remain committed to change and a voice to speak up for each person with a medical condition or malady that they are not satisfied with their treatment options.

I do have some questions:

Why would you focus on CBD low THC that only ½ of the kids with Intractable Epilepsy would benefit from according to the Massachusetts GW Pharmaceuticals Study?  Preliminary results reported here:  http://www.gwpharm.com/Clinical%20Use.aspx

Other states are already doing this and their results are having only 50% success.

After Nebraska would permit studies, what happens to the patients that they study has helped?  Do they get a “Pass” that allows them and only them to continue on this treatment? Or are they still going to have to move to Colorado to actually get CBD low THC medication that works for them?

What happens to the rest of these patients?  The one’s that CBD low THC did not help? Do you say oh? Sorry we did what we could?

What happens to the patients who did get help, who are now NO LONGER advocating for additional resources for those who did not?

What happens to these patients if they start as children, as they get older? Will they be allowed to use their CBD low THC medication into adulthood in Nebraska?

The federal government has allowed  with 5 or 6 patients that still remain alive and are exempt from marijuana prosecution and in fact have been sent marijuana for years by the United States Government.
http://medicalmarijuana.procon.org/view.answers.php?questionID=000257

What about future patients who have intractable seizures?

What options are you giving those who do have medication controlled seizures, but who’s livers are being damaged beyond repair due to their prescribed pharmaceuticals?

Are you Senators as citizens and representatives of Nebraska going to say to yourselves, well we’ve done what we could for these kids, our conscious is clear we don’t want anything to do with THC because we don’t want to have this conversation with your constituents?

Will you continue opening your minds to approve of  research done in other states and countries?

What happens when your mother gets cancer and the treatment options available in Nebraska are not going to save her?

What happens when your child gets in an auto accident gets a brain injury and now gets horrendous migraines each day with no more than 3-12 hours of relief for YEARS? Their pain never relenting.

Do you realize that the seizure medications that these children already take or have taken get them stoned and high as well? And damaging brain cells.. have any of the medications we’ve all been subjected to taking ever been tested how many brain cells they kill off?

What about people like me, with genetic mutations? Will we be allowed to be in studies? Typically we are not allowed, due to the company not wanting to have bad results because of us. Which is also why we likely have different reactions than the rest of the population with prescribed medications in my opinion..

What about the adults, who are so busy trying to stay alive that they can’t come here to speak for themselves?  There is no one to advocate for them.  Will you be thinking of them, have their interests in mind as you tell them no we don’t want to allow THC due to it being more addictive, while still allowing a medication like Desoxyn to be on the market and prescribed to those with ADHD and those who are overweight which is just a prescribable form of Meth?  Which provokes questions online like, “My doctor prescribed Meth for ADHD should I take it?

Are you going to protect these parents from being charged with child abuse due to the fact that they are giving their kids CBD low THC medication or other types of Medical Marijuana?

When these children play sports are they going to be penalized for being prescribed and taking CBD low THC medication?

Do you realize that those who have intense regular migraines are given the same medications as those who have epilepsy? Do you realize that many of those people have intractable migraines?  Yes people do not die from migraines, but brain damage is done, and people do die from the side effects of the medications.

Those with muscle disorders, pain disorders, soft tissue damage, brain disorders all must use medication that will eventually destroy their internal organs. Dystonia, Multiple Sclerosis, Muscular Dystrophy, Ulcerative Colitis, PTSD, as well as Epilepsy.

When these patients are able to work will you going make sure that they can avoid recourse from the businesses and companies that they work for when they test positive for marijuana?

Do you realize that many of these people including kids are already on opiate medications regularly?

What happens to the rest of the disabled and medically fragile population that has no one to advocate for them, who’s resources are used to just stay alive?

How are they going to get this currently illegal to grow CBD low THC medication?  Can they cross state lines with it breaking Federal Law and be free from persecution?  Will the State of Nebraska be bringing it in regularly for them? Can they grow it for themselves like many other states allow, or will they need a dispensary to provide specific strains?

Where do cancer patients fit into this? What about brain injury patients?  Those of us here with disabilities are the exception not the norm.  We either have resources greater than others do or have managed to find options for ourselves to be able to speak here today.

If you operate out of fear, avoid facts, and cannot think out of the box with confidence to stand your ground and advocate for your choices I feel incredibly sorry for you.

I used to think like most people do in this state.  That Marijuana has no good uses. I was effectively brainwashed I believe.

I am no longer willing to sit by and ignore the fact that this plant will save the lives of millions of people legally or illegally. Making taxes off of this for the State of Nebraska seems like the responsible choice.

The families that this legislation would help are valuable.  My words today are not against this legislation, but merely to point out that passing this is only the very beginning of what needs to be done. When you write this consider the questions I have asked.

If you are just willing to do the minimum, and not look at expanded options, these families would be better off to move to a state like Colorado where they will become medical refugees to be sure, but they will be free from prosecution, and able to get the help that they need for their children into adulthood.

Be proud of what you can do, stand for something, educate others, answer the questions, and stand with us, be the one who brings about Equality Before The Law, it is Nebraska’s Motto. Let it also be yours!

May your journey be courageous!

Tonja and Duke

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