It's been a crazy train around here lately. Spring break was enjoyed by all. Mason spent 10 days with his cousins in Kansas and had a blast. Delaney worked a lot and finished up coaching her club volleyball team this past weekend. Matt was on vacation the whole week so we enjoyed having him around and he and I were able to sneak away to Kansas City for a long weekend. It was nice to get away and relax a bit although home was never far from our minds.
We followed up with our local neurologist last week and tried to do an increase on one of their seizure meds. That did not go well. Lindsey was completely crazy at times and the blinking seizures were near constant the whole time. She also had a couple of really large seizures that were not typical either. Lauren reacted the exact opposite as she was more docile than usual but, the blinks were also constant with her. We tried it for a few days and then went back down to our usual dose. That now means that we are maximized on all three medications they are on for seizures. We are traveling up to Mayo at the end of April so we will see how our consultation with a neurologist up there goes. Our local neuro was not comfortable adding in any new drugs and we were perfectly fine with that. Wish the increase would have worked but, wasn't meant to be I guess. Our bad days of blinking seizures are increasing again so we need to do something to try and get them under control. They are very disruptive to their daily living. Imagine trying to get anything accomplished while your eyes are in a constant blinking action and your brain is constantly firing. That's what our girls deal with everyday...
I want to thank everyone that showed their support for my last blog regarding medical marijuana. (From here on out I will call it by it's scientific name...cannabis. That removes the stigma associated by the "M" word.) I was moved by those who reached out to their elected officials and showed their support for legalization for medicinal use. Our legislators need to hear from their constituents who are in support of this legislation and they need to be educated about the benefits of medical cannabis. I spent Monday at the Capitol taking part in a meeting with Senators with other epilepsy moms and two war veterans with PTSD. Each of us had a chance to share our stories with the Senators and answer questions they had. One mom who was present moved with her husband and daughter to Colorado last year and is currently giving Charolette's Web (cannabis oil) to her daughter. She has seen at least a 30% decrease in her seizures since starting the medicine. That is encouraging!! I was moved by the stories of our veterans who went to war for our country and are now suffering from PTSD. Their stories of anxiety, nightmares and fear broke my heart. Listening to the stories of the other moms present who have children with uncontrollable seizures and pain brought me to tears. Wednesday we took part in Epilepsy Awareness Day at the Capitol. We were surrounded by many families dressed in purple sharing their stories with the legislators and media. There was definitely strength in numbers and it was great to be a part of it. Some very courageous Senators are putting together 11th hour legislation to try to get a bill passed this year that would protect parents who travel to Colorado to get CBD cannabis oil to treat their children. It is a long shot but, a shot worth taking. The patients would be registered with the State of Iowa, have a prescription from their doctor in Iowa, carry a medical card from the State of Iowa and could legally transport the cannabis across state lines without fear of prosecution. This is a tiny baby step in the right direction. Unfortunately, it does not help everyone that needs medical cannabis but, I am confident this will help get the ball rolling for full medical cannabis legislation. I know our stories are making an impact on these legislators and we are gaining ground on getting bi-partisan support. It seems the only one who is not willing to listen and get educated is the Governor, which is infuriating. He has gone as far as to encourage families to pack up and move to Colorado. He states he is not willing to sign any legislation for medical marijuana and is giving a list of things he "thinks" will happen instead of allowing people to educate him on how it can work in a safe and regulated way. He is close-minded and not willing to listen to the now 81% of Iowans who support medical cannabis. In my opinion, that is completely unacceptable.
Matt and I and the girls had a nice talk with Rep. Clel Baudler and were encouraged to hear that he is showing some support for CBD cannabis oil for treating epilepsy patients. If you are not familiar with what I mean by CBD cannabis oil, it is high in CBD which is non-psychoactive and low in THC the psychoactive ingredient. It will not cause the patients to get high and is administered orally, not smoked. If a recreational drug user got his/her hands on this, he/she would be very disappointed. This is what we would give our children. We will continue to work with Clel and ask for his support.
If you want to continue to help our efforts, please continue to reach out to your elected officials and ask for their support. https://www.legis.iowa.gov/legislators/find You can call Governor Branstad at 515-281-5211 or contact him by this link. https://governor.iowa.gov/contact/. He cannot continue to ignore the issue and bid us a farewell to Colorado any longer. The time is now and we will not stop fighting until this medicine is legalized in Iowa.
I shall now move off my soapbox and leave you with one last thought. GO CYCLONES!
Friday, March 28, 2014
Monday, March 10, 2014
Medical Marijuana: Legalize It
You had to know it was coming...Kim is going to talk about medical marijuana. Yep, it is true. I am 100% for the use of medical marijuana. If I could, I would give it to my girls today. But, I can't...legally. If you have been watching the news at all, you know this is a hot topic at the state house and actually around the United States. Right now, 21 states including the District of Columbia have legalized medical marijuana. Many other states have proposed legislation for this year. Iowa WAS one of them until it failed to advance last month. Yes, our state government found it more pertinent to legalize the use of fireworks than to pass a bill that would help to improve the quality of life of thousands of seriously ill Iowans. Really?
Now I have educated myself about the use of marijuana to treat seizures and I am hopeful that it can help our girls someday. I have also read and heard stories about how it helps people with other debilitating and life-threatening diseases. Did you know medical marijuana has been approved to treat the following conditions in the states that have legalized use? This is not a complete list by the way.
1.Cancer
2. Epilepsy
3. Multiple Sclerosis
4. Parkinson's Disease
5. Huntington's Disease
6. Post-Traumatic Stress Disorder
7. Lou Gehrig's Disease
8. Terminally Ill - Hospice Care
9. Chronic Pain
How many of you know someone who is affected with one of the above mentioned conditions? Yes, all of you. You probably know people who are affected with more than one of the above. You may very well be affected yourself. Is marijuana going to cure all of them? No. Can it help relieve the symptoms of the disease? Yes. Marijuana has been found to suppress cancer, reduce seizures, reduce blood pressure, reduce vomiting and nausea, alleviate pain and even inhibit HIV. It is a natural antioxidant, anti-inflammatory and neuro-protective. Patients needing to use medical marijuana have tried traditional forms of treatment without relief. For many, there are no other treatments available.
You do not have to smoke marijuana to receive benefits from the plant. In our case, we would give the girls an oil that is high is CBD - the part of the plant that is not psychoactive (meaning they will NOT get high) and low in THC - the psychoactive ingredient. Marijuana can be vaporized and also made into a tincture or capsule. There are other cannabinoids in marijuana other than THC that help treat illnesses. So please do not think that everyone who uses medical marijuana will be smoking joints and getting high. It is just not true! I have included the below visual to help illustrate my point.
Many have asked me what they can do to help get this form of treatment legal in Iowa. First of all, I would encourage you to educate yourself about it. Many of you I know fully support it. Many I know do not. I ask you to educate yourself about it before making a judgement. Iowa's most critically ill are not looking to get high for fun. They are looking to have a better quality of life without constant pain. They are looking to increase their quality of life while they live with a debilitating disease. When they are in their last days on this earth, they are wanting to be able to spend time with their families in a conscious state, not a drug induced sleep. We as parents of children with intractable epilepsy want our kids to be able to enjoy life with fewer seizures and not be in a constant state of worry that the next seizure is the one that will take their life. We are not asking for full legalization of marijuana. Less than 1% of the population will qualify and it will be strictly regulated. We are asking for a program like what is currently being used in New Mexico. You can easily Google their program to see how it is run if you want more information. Or, you can click here: www.nmhealth.org/mcp
Second, I am asking you to reach out to your elected officials. If you support it, please let them know and ask their stance on it. If they are not for it, ask them why. If you have a story how it could personally help someone you know, please share it. If you need help with this, please let me know. Many of our legislators are on board. Many others are admittedly uneducated but are willing to listen. A few are just plain against it. For my Adair County family and friends, you all know Clel Baudler is one of our biggest opponents. I have contacted my old neighbor Clel and shared our personal story with him. His reply to me was "Got your email. Looking it over. Putting it in my file." (Copy and pasted straight from my email, word for word.) Are we ever going to see him change his stance? No, I am sure not. But, he needs to hear from his constituents who do support it and who may or may not re-elect him this fall. So please, bend his ear and let him know how you feel.
Please also don't forget to contact Governor Branstad and share your feelings with him. If you do not know who your elected officials are, click below and you can find out:
https://www.legis.iowa.gov/legislators/find
Lastly, share this blog or information with your friends and family and if they support it, have them contact their legislators. The last poll I saw showed that 59% of Iowans are for legalizing marijuana for medicinal purposes. We need to make sure that our legislators hear from every single one of us. We are getting closer to winning this fight and hopefully in the near future, marijuana will be a legal form of treatment for Iowa's most critically ill.
Kim
Now I have educated myself about the use of marijuana to treat seizures and I am hopeful that it can help our girls someday. I have also read and heard stories about how it helps people with other debilitating and life-threatening diseases. Did you know medical marijuana has been approved to treat the following conditions in the states that have legalized use? This is not a complete list by the way.
1.Cancer
2. Epilepsy
3. Multiple Sclerosis
4. Parkinson's Disease
5. Huntington's Disease
6. Post-Traumatic Stress Disorder
7. Lou Gehrig's Disease
8. Terminally Ill - Hospice Care
9. Chronic Pain
How many of you know someone who is affected with one of the above mentioned conditions? Yes, all of you. You probably know people who are affected with more than one of the above. You may very well be affected yourself. Is marijuana going to cure all of them? No. Can it help relieve the symptoms of the disease? Yes. Marijuana has been found to suppress cancer, reduce seizures, reduce blood pressure, reduce vomiting and nausea, alleviate pain and even inhibit HIV. It is a natural antioxidant, anti-inflammatory and neuro-protective. Patients needing to use medical marijuana have tried traditional forms of treatment without relief. For many, there are no other treatments available.
You do not have to smoke marijuana to receive benefits from the plant. In our case, we would give the girls an oil that is high is CBD - the part of the plant that is not psychoactive (meaning they will NOT get high) and low in THC - the psychoactive ingredient. Marijuana can be vaporized and also made into a tincture or capsule. There are other cannabinoids in marijuana other than THC that help treat illnesses. So please do not think that everyone who uses medical marijuana will be smoking joints and getting high. It is just not true! I have included the below visual to help illustrate my point.
Many have asked me what they can do to help get this form of treatment legal in Iowa. First of all, I would encourage you to educate yourself about it. Many of you I know fully support it. Many I know do not. I ask you to educate yourself about it before making a judgement. Iowa's most critically ill are not looking to get high for fun. They are looking to have a better quality of life without constant pain. They are looking to increase their quality of life while they live with a debilitating disease. When they are in their last days on this earth, they are wanting to be able to spend time with their families in a conscious state, not a drug induced sleep. We as parents of children with intractable epilepsy want our kids to be able to enjoy life with fewer seizures and not be in a constant state of worry that the next seizure is the one that will take their life. We are not asking for full legalization of marijuana. Less than 1% of the population will qualify and it will be strictly regulated. We are asking for a program like what is currently being used in New Mexico. You can easily Google their program to see how it is run if you want more information. Or, you can click here: www.nmhealth.org/mcp
Second, I am asking you to reach out to your elected officials. If you support it, please let them know and ask their stance on it. If they are not for it, ask them why. If you have a story how it could personally help someone you know, please share it. If you need help with this, please let me know. Many of our legislators are on board. Many others are admittedly uneducated but are willing to listen. A few are just plain against it. For my Adair County family and friends, you all know Clel Baudler is one of our biggest opponents. I have contacted my old neighbor Clel and shared our personal story with him. His reply to me was "Got your email. Looking it over. Putting it in my file." (Copy and pasted straight from my email, word for word.) Are we ever going to see him change his stance? No, I am sure not. But, he needs to hear from his constituents who do support it and who may or may not re-elect him this fall. So please, bend his ear and let him know how you feel.
Please also don't forget to contact Governor Branstad and share your feelings with him. If you do not know who your elected officials are, click below and you can find out:
https://www.legis.iowa.gov/legislators/find
Lastly, share this blog or information with your friends and family and if they support it, have them contact their legislators. The last poll I saw showed that 59% of Iowans are for legalizing marijuana for medicinal purposes. We need to make sure that our legislators hear from every single one of us. We are getting closer to winning this fight and hopefully in the near future, marijuana will be a legal form of treatment for Iowa's most critically ill.
Kim
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