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Client Spotlight

Client Spotlight: Stacey

I started having episodes, as they were called back then (now known as seizures), back when I was in elementary school. I’m now 40 years old and still have epilepsy. It’s a constant fight and stalker in my life, but CBD oil has given me some hope. It works far better than any of my seizure medications ever have.

At my age I have completely depleted all my options, so I am reliant on CBD oil to keep the seizures at bay and give me hope for the rest of my future, so I can be around and be functional to care for my family and be here for all the family moments and moments with grandchildren. I wouldn’t go a single day without my CBD oil. It truly does help. No side effects, that’s good too!

-Stacey

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Client Spotlight

Client Spotlight: Taylor

Submitted by his mom, Stacey,

This young man has lived his entire life plagued by epilepsy since he was born and will continue to do so for the rest of his life. But this is not just any epilepsy, It’s UNCONTROLLED EPILEPSY, among other medical issues. Being born one month premature set the stage for so many of his issues, including epilepsy, Autism, bipolar disorder, depression, and anxiety, both generalized & social. He has a learning disability. He has spent more of his life in doctors offices & hospitals & asleep recovering from seizures, then he has normal activities. He is special needs due to all these issues combined. He will probably never be able to live on his own due to all this and his disabilities. This disease & medical problems, being born premature & just never having a normal life due to them has deprived him of the ability to learn and retain even basic life/ living skills. We are his advocates.

So with a lot of research & a recommendation from two of his doctors, we began using nonconventional medical treatments/therapy to treat Taylor’s epilepsy and other issues. It’s proven thus far to help, and better than what was previously being used which caused him more harm than good. Great to find an alternative therapy and medical treatments to work in his favor, but the expenses of his medical treatment are a downfall. We cannot afford it, and none of it is covered by his insurance. We struggle financially to make things work for him. He has been through so many medications (seizure meds), that he ran out of options. Meds had begun to start to show signs of making his insides “angry.” Liver tests come back abnormal in areas they shouldn’t and so he’s having to be weaned off meds and is undergoing this special treatment to address his medical problems to help control his epilepsy. The nonconventional methods have been of some help to him and more so then the medications, without damaging his internal organs.

NONE of this is covered by insurance, and so we are drowning and killing ourselves trying to afford this form of treatment, to keep him healthy and seizure free. It’s his only option at this point. We need help with these medical expenses and therapies! He’s a fighter and we continue this battle every day, without CBD oil Taylor probably wouldn’t be with us. He fights with all his might. Please like and follow his page on facebook https://www.facebook.com/taylorsfight4anormallife

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Client Spotlight

Client Spotlight: Jessie

I was a hospice nurse when a work accident suddenly ended my career and altered my life drastically. It left me disabled with a spinal injury, limited mobility, and constant excruciating pain.

It seems so silly now, but I was so scared to try cannabinoid therapy. Even though I was taking opiates and benzodiazepines around the clock to manage the pain and muscle spasms.

It’s silly because I had already tried EVERYTHING else, including a major surgery that left me in an even worse condition. But the stigma of medical marijuana frightened me so much, and a risky surgery was more socially acceptable. Deep down, I didn’t believe a plant could help me when morphine barely touched the pain.

Finally, my mom convinced me to try medical marijuana. “You’ve tried everything else,” she said, “you have to try this.” The day I started MMJ is the day I stopped taking benzos and opiates. I haven’t needed them since, and it’s been nearly two years.

The first time I used medical marijuana, the spasms just melted away and the pain lifted. I knew at that moment, this plant could give me a bit of my life back.

Now, cannabinoid therapy is not a magical cure. It hasn’t healed my spine or returned my full range of motion. But MMJ has enhanced my quality of life on a massive scale. Cannabinoids control my pain and spasms without the harsh side effects of opiates.

I’ll never have my hospice nursing career back, but I created MarijuanaMommy.com to help others buck the stereotype and try medical marijuana because this plant is changing lives around the globe. It’s time to stop fearing it.

-Jessie

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Client Spotlight

Client Spotlight: Robin

At the age of 57 I have lived with intractable complex partial seizures for 44 years. Neurologists have had me try most of the anticonvulsants that are made and I still take three of them. When I became persistent to my epileptologist about trying CBD he finally gave me the name ‘Realm of Caring’ to contact!

RoC has been a joy to work with as well as CW and my family and I thank you. My last day of cluster seizures (5) was almost a year ago and I started taking CBD oil the next day. I have had no cluster seizures since! My doctor is happy with this outcome and we even cut down some of my other meds, but it’s a careful journey. I still have periodic seizures, 1-2 a month, but they are very mild in length, neurological effects and number compared to 5-7 a month in previous years past. Thank you RoC.
-M.R.S.

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Client Spotlight

Client Spotlight: Helen

I have been having muscle spasms severely since I was about 15 years old. I’m now 45 so that is a long time. Most days it feels like all my muscles are going to rip off my body at any moment. I ruptured a disc in my thoracic spine in my mid 30’s. T7, T8. I was told this is not common, but from all my research it is more common than doctors say. My ruptured disc is causing spinal cord compression. I can NOT have surgery because I have some kind of bleeding disorder. No doctor will touch it. To make matters worse I do not have health insurance.

I have been suffering a very long time. It is bad when you wake up and all you think about is the pain. People are talking to you and you are in so much pain you do not even know what is being said.

Three days! it has only been 3 days! and I feel so much better. It was about 3am this morning, when I just kind of felt as if someone was putting a soft cloth over the screaming pain. I’m excited. I may get to enjoy some of my days. I know it has only been three days, but I have never felt this kind of relief. It’s a numbing sensation I guess is the best way to describe how It feels. Best money I have spent in eight years. Thank you, Thank you.

-Helen

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#RaisetheRealm 7 Days Left To $70K

The Selmeski family moved to Colorado in November of 2013 from East Tennessee so their young daughter with intractable epilepsy, Maggie, could legally try cannabinoid therapy. Back in 2013, many families moved to Colorado in search of legal cannabis.

[youtube https://www.youtube.com/watch?v=7TazlRaFDpc?rel=0]
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The Selmeski family moved to Colorado in November of 2013 from East Tennessee so their young daughter with intractable epilepsy, Maggie, could legally try cannabinoid therapy. Back in 2013, many families moved to Colorado in search of legal cannabis. You may have heard of Pot Pilgrims or Medical Refugees? Hundreds of families relocated in search of a miracle. Back then, it was required to have Colorado residency and a state medical cannabis card in order to obtain any cannabis products, including CBD. This was no small task.

When the Selmeskis moved to Colorado, Maggie was having up to 500 seizures a day. She had tried 6 different anticonvulsant pharmaceutical medications with no relief. Maggie became limp and lifeless, completely sedated on traditional “legal” pharmaceuticals.

Today, Maggie is enjoying 90% seizure reduction without pharmaceuticals. She smiles, laughs, and makes eye contact. She now attends school and finds creative ways to communicate with her family. All things that were not possible before cannabinoid therapy.

Maggie is now age 5, and her little brothers are Maddox who is 3 and Myles is 1.
#siblinglove #raisetherealm

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#RaisetheRealm 6 Days Left to $70K

[youtube https://www.youtube.com/watch?v=Bt3-C5YrfkU]

Looking at Chloe Levine, you wouldn’t know anything was “wrong” with her.  She laughs, smiles, and plays with her older sister, Shayla, doing anything a normal pre-teen would do.  Chloe had suffered a stroke in utero, probably early in pregnancy, and this resulted in hemiplegic cerebral palsy.  For the first 2 years of her life, she was not able to use the right side of her body until she had a stem cell transfusion with her own cord blood.

Chloe also has seizures, and she uses cannabinoid therapies to help keep them under control. She has tried both Lamictal and Keppra, which her mom says almost killed her.  Chloe would sit in the corner and scream for hours on end.

They decided to try cannabis oil because traditional pharmaceuticals were wasting her precious time and using something more natural seemed appealing.  Chloe’s family had heard many incredible stories of how THCA (the acid form of THC) oil could help children like her. Chloe’s neurologist calls her a miracle patient. She went from a sleep-deprived walking zombie, because her seizures kept her up all night, to a B student who once again has the will to tackle the world.

Chloe is now 11 and Shayla is 14. #raisetherealm #siblinglove

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#RaisetheRealm 5 Days Left to $70K

[youtube https://www.youtube.com/watch?v=4WqnfySaVCg]


The Brown family are natives of Colorado and Tyler has suffered from debilitating seizures since the age of 7 from a rare form of intractable epilepsy know as Lennox Gastaut Syndrome, and he also has cerebral palsy. Tyler has been through more than most of us. He had a VNS (vagus nerve stimulator) implanted age at 9, emergency Corpus Callosotomy (for those of you who don’t know what that means the surgeon cuts the corpus callosum, which is the large fiber bundle that connects the two sides of the brain) to stop status seizures at age 10.  Tyler also had a G-tube placed at age 10 because eating/chewing would trigger seizures and aspiration.

Tyler’s family tried 12 different pharmaceutical medications to control his seizures. Every single one failed. After the Corpus Callosotomy, two medically-induced comas, and unresponsiveness to rescue medications, there were no other options. This is when Tyler’s mom learned about medical cannabis.

She says it was their “only hope”.  Since using cannabis, Tyler reduced the number of pharmaceutical medications, and he is much healthier overall. No more frequent pneumonia and other illnesses landing him in the hospital. Until recently, the cannabis therapies have kept Tyler’s seizures at baseline.

Now that Tyler is 16, he is dealing with puberty, which means an increase in hormones. This has caused an increase in seizures that not even cannabis can control. Tyler’s parents have tried CBD alone, THC alone, and a combination of both. THC was very useful for Tyler’s withdrawal symptoms when weaning his pharmaceuticals.

Tyler’s mom, Rita, would like to add “a huge thanks to Realm of Caring, the Stanley Brothers, Heather and Paige for all the support and knowledge while going through this process. We couldn’t have done it without them!”

#RaisetheRealm #SiblingLove


TYLER2
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Stories

Let’s Talk About Epidiolex

Today was a big day in the world of cannabis. The first ever plant-based pharmaceutical drug made from cannabis rich in cannabidiol (CBD), Epidiolex, was scheduled by the DEA. You’d think it would be scheduled as a II or III because “marijuana” is schedule I (no medical value with high potential for abuse/federally illegal). Not the case. Epidiolex was scheduled as level V the lowest possible schedule – least restrictive – which legitimizes the proven health benefits of CBD and its low potential for abuse. To give you a comparison, Epidiolex is in the same category as cough syrup with small amounts of codeine and yes, it requires a prescription. The FDA approved the drug in June for two rare and severe forms of epilepsy, Lennox Gastaut Syndrome (LGS) and Dravet Syndrome. It is possible that doctors will write prescriptions “off-label” for other epilepsy conditions that can benefit from CBD.

There is a lot of confusion surrounding this topic so we wanted to clarify a few things for you. As we learn more we will update this article.  First, this doesn’t change anything for those of you who are using whole plant botanical extracts made from industrial hemp. The molecule CBD did not get scheduled today, only the drug Epidiolex. This motion by the DEA does allow for future FDA approved cannabis-derived pharmaceuticals as long as the THC limit is less than 0.1%.  CBD did not get patented, you can’t patent a plant. CBD is not illegal if you are following your state laws, plus we have the added protection from the Farm Bill and Omnibus Bill from federal prosecution. Accessing CBD is a personal decision and you should make the best decisions to improve the quality of life for you or your loved one.

Currently, there are synthetic (man-made) forms of cannabis pharmaceuticals Cesamet and Marinol on the market which are scheduled as II and III and are prescribed to chemotherapy patients with vomiting and severe nausea. These drugs are THC based, not high in CBD. If you live in a medical or recreational cannabis state you can access THC products under state laws, although it is still federally illegal with “marijuana” as schedule I.

Having Epidiolex on the market is a move in the right direction because the US government clearly recognizes the medicinal benefits of cannabis. FDA approval also means insurance companies should cover the cost because it is expected to be pretty pricey. If they don’t (and you may need to fight for coverage)this may turn into an unaffordable option.

Fun Fact:
Did you know cannabis was available as a pharmaceutical drug in the US until 1947? Then reefer madness happened and the public was largely misinformed. We are thrilled cannabis is getting her positive reputation back!

Did you know:
We are conducting the largest observational cannabis study in the US in collaboration with Johns Hopkins University. In our epilepsy population, the average dose of CBD is 2mg/kg (the range is 7mg CBD-600mg per day). The starting dose of Epidiolex is 5mg/kg. Their studies titrated participants up to 20mg/kg or higher.  It is really important to know and discuss this huge variance with your doctor.

If you found this article interesting, please share it with your friends and comment below!

[youtube https://www.youtube.com/watch?v=IJNLGIr37Ls]

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Stories

#HopeMatters Meet Paula and Jordan

Episode 1 of 7

[youtube https://www.youtube.com/watch?v=XVLnq4-Dvqs]

Tune in tomorrow to hear the rest of Paula and Jordan’s story.

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In 2013 Paula and Jordan made a decision that would forever change their lives. Leaving their family and friends in Ohio and moving to Colorado was something they never imagined. All in hopes of a treatment to control Jordan’s seizures caused by a catastrophic form of epilepsy called Dravet Syndrome.

Her seizures started when she was 6 months old and by the time she was 18 Jordan had tried a dozen different pharmaceuticals and nothing controlled her seizures. On her worst day, she would have more than 70 grand mal seizures in a 12 hour period. Jordan’s mom, Paula, was desperate to find some relief for her struggling daughter. “She’s living, but she’s living in a zone,” says Paula. Jordan was placed on palliative (hospice) care and the doctors said there wasn’t anything else they could do.

Paula heard about Charlotte Figi’s story and her success with cannabis, specifically CBD products, for Dravet Syndrome. But Paula didn’t know anyone in Colorado and thought it was crazy to pack up their lives and leave her husband and their other daughter in Ohio.

That’s when Paula said she asked for divine assistance and their path was made clear. Within a couple of months, they moved to Colorado and got started with cannabinoid therapies right away. Since then, Jordan has been able to wean off two pharmaceutical medications, one highly addictive. Jordan has improved cognitive function and better quality of life.

Quality of life matters.  You can make a lasting impact for a family like Paula and Jordan’s by donating your time as a volunteer or by making a tax-deductible donation to the Realm of Caring.  With your support, the Realm of Caring can continue to offer programs and services to thousands of families around the world who are looking for guidance with cannabis therapies.

For just $1/month you can be a RoC Friend and support families like Paula and Jordan’s. Join us today.

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