Author: jessica

Written by mom Roberta

At 5 months old we started noticing Matthew wasn’t progressing in milestones, as he should. At 17 months he started having seizures, and he has had multiple seizures every day since then. He would have every type of seizure you could imagine. Shortly after diagnosed with seizures, he was diagnosed with a rare genetic condition.

We have tried around 12 different seizure medications, with no help. Even (ACTH), that will grow hair in places babies shouldn’t have. We also tried the medication Felbatol that can cause liver damage. The ketogenic diet has helped the most even though he would still have a hundred seizures daily. We started CBD oil at the end of March, and by the end of May, Matthew was seizure free. This is the first time since Matthew was 17 months old.

Matthew is such a sweetheart, full of smiles and giggles. We just noticed he has dimples because now he can smile. Every day has been a good day. Before he would just lay around with no energy and now he is full of energy. Please make this oil available for all who need it. Just imagine the change it could make in the world.

Written by mom Roberta

MY 25 YEAR JOURNEY:

My family and I have powered through and persevered over uncontrolled epilepsy for 25 years. I’ve been on over 25 different drugs none of which has controlled my seizures. I have had multiple hospital stays, countless trips to the emergency room, falls, hundreds of blood draws, and two Vagus Nerve Stimulator transplants. I’ve tried the ketogenic diet, neurofeedback, and numerous vitamins and herbal supplements.

While none of the combinations of medications worked to control my seizures, I did experience side effects including pancreatitis, lack of concentration, drowsiness, weight loss, insomnia, fatigue, irritation, confusion—in short, a lot of my life I’ve been in a drug-induced haze! I’ve experienced bullying by peers and teachers and because my seizures were not under control I wasn’t able to socialize or join activities I really wanted to do.

My last six months of high school I was asked to complete my final credits privately because it was “unsafe” for me on campus. I managed to obtain an Associate Degree and I’m currently in my senior year of college majoring in Mass Media. It hasn’t been easy but as I said before we have persevered.

The past nine months of my life have been among the best ever. Nine months ago I started taking CBD oil. I have gone from having 1-3 major seizures a month before CBD oil to not having a seizure for periods as long as thirteen weeks! We have completely eliminated one medication, have reduced two by a third and I’m currently weaning off another medication.

I am learning to paddleboard and rock climb. As I keep telling my family and friends I feel like I’m “coming alive”.CBD oil has given me my life back. I can’t get back the days, weeks and months I’ve lost to seizures and the side effects of prescribed drugs but I’m going to make the most of each and every moment going forward thanks to CBD.

Now that we have said good-bye to busy, let’s turn our attention to a worthy replacement. The word I have in mind – when spoken softly – will create a rounded wave in your mouth, as it brings your lips to a sweet pucker, only to release into an ever so slight of a smile. This word in all of its meanings and connotations will bring back a sense of balance to a more present, healthier YOU!

Without further ado ladies and gents, let’s welcome the word….. Boundaries!

Woot woot!

And in welcoming the word, let’s also accept it’s meaning! This is where we might break off into two categories and I would be interested in hearing which one resonates with you.

Boundaries will either make you:

1. Cringe
2. Feel empowered

Depending on which camp you fall in – and we will address both – speaks directly to how familiar you are with the implementation of boundaries in your life.

It makes you cringe, does it?

You are not alone. And not to stress the gender gap, but I think that women might have a tougher time with boundaries than men do for the simple reason we feel it’s impolite. The people pleasers in us reject, and often suffer, with the word, “No”. Ouch! A hard “no” is harsh! Succinct in its two-letter delivery, there is no bend! None. It’s hard to hear it too. Our childhood was littered in “No, no, NOOOOO’s!” I get it, I have vacillated in both camps, mostly this one, though, until my physical health began to pay the price and I was forced to make changes. Therefore, if you are here, we are learning together.

How many of you feel, empowered?  

If you are in this camp, Bravo! People who set boundaries with ease are less stressed, more effective, clear communicators, more compassionate (believe it or not) and for a lack of a better word, happier. This means you know yourself well. Setting boundaries in your personal relationships, at work and as you transit through life means you respect yourself and therefore you recognize and appreciate these qualities in others.

Think about a time when you have felt overextended, overcommitted and underappreciated. In such times it is easy to blame your boss, your significant other, or even your friends for your frazzled nerves, and yet…. (read this with all of your attention twice!)…  NO ONE can betray us as deeply as we betray ourselves.

Go ahead… That merits a second go ‘round. NOBODY CAN BETRAY US AS DEEPLY AS WE BETRAY OURSELVES.

Part of setting and communicating boundaries is knowing them! This entails honing the most important relationship of all; the grandest love affair you will ever have; the one that builds the foundation for all other relationships… AND the one that will never end!!

Yep, baby! That’s the one with YOUR beautiful self! This is the most worthwhile personal investment, as well as the most neglected.

Let’s regroup, shall we?  

Self-love + self-respect = Boundaries!

Low-self esteem + people pleasing = betrayal of self (no boundaries) 🙁

Daring to set boundaries is about having the courage to love ourselves even when we risk disappointing others.  

– Brené Brown

I recently reached out to an acquaintance regarding a topic I wanted to discuss with her and she responded by saying, “..I’m feeling wiped and sleepy after my day, but let me check in with my energy and tell you tomorrow if we can chat..”  

I was impressed by her response because it was so honest and it motivated me to want to do the same! We make so many excuses and apologies when honesty is so well received. This simple exchange taught me so much. Setting boundaries is a way of showing mutual respect and kindness.

Are you lacking in boundaries? What are some ways that you set boundaries in your life? How has it made a difference? When you share, we all learn! Comment below and if you know someone who needs to hear this message, will you share it with them?

By: Lisa Lopez, Content Creator – Realm of Caring

Have a question for Lisa?  Or want to suggest a topic?  Email Lisa@theroc.us 

Written by mom Dawn

My daughter Synthia has suffered from seizures since she was 10 months old. She is now 4 and we have exhausted every medication we could try to stop them. The neurologist said we can’t do anything else, Synthia regressed with several of the psychoactive drugs. My daughter is nonverbal, she can sit up and bunny hop to crawl but she can’t walk independently and needs total dependability.

We heard about CBD oil two years ago when it aired on the news, our friends and family called us just to make sure we saw this. I was blown away and had such great new hope. My heart was so full because it never gets any easier watching your baby have seizures all day. We called the Realm of Caring and were told that we could only get it if we lived there. So we started making arrangements to move which is very expensive. We were going to split the family and go but we heard we would be able to get it in our state (not knowing we would have to get into a study that didn’t even exist at the time). So we were sad and back to square one. We let Synthia finish out her school year at a special needs school that we love and talked about moving again.

Then we received an email stating the CBD oil could be shipped. I was so excited I cried. I called the ROC and they were so very helpful with dosing questions. Syntha went one month with no seizures, she has been very happy, laughing like I have never heard her laugh, she has more energy than before, and she has no side effects. Teachers say she is a different child. Synthia has started walking in her walker all over the place. She is blooming like a flower. God sent this to us and it is a miracle.

Written by mom Cheryl

Bradley has been taking cannabinoid therapy for about a year now. Before he started therapy, Bradley had frequent meltdowns, was hyper, made poor eye contact, and was not interested in the environment around him. Everything has improved except for he is still nonverbal. If someone walks in my back door, he hears that now and goes to see who it is (he didn’t do this before). His meltdowns significantly improved. Bradley is still very autistic but so much better than he used to be.

My family members kinda scattered when Bradley became autistic at 16 months old. It would be an inconvenience for my family to actually help. “Not my kid, not my problem” is their motto. The impact on me is huge. I’m all by myself with Bradley and every day is a struggle. This grant has helped take some stress away from me. I truly believe this therapy has helped Bradley and I can’t even imagine what would happen to him if I couldn’t give him this oil anymore.

The grant has absolutely eased my financial burden. The extra money has helped with everyday expenses, clothes, food or sensory toys for Bradley. Many businesses have special needs nights but they still charge money and you don’t know if your child will stay 5 minutes or an hour. I was able to take Bradley to one of those events. I have even enrolled Bradley in swim classes. Thank you Realm of Caring for your generosity.

Matthew has “innumerable” brain tumors from his genetic disorder Tuberous Sclerosis and has tried and failed all medications. He used to have up to 15 grand mals daily, along with every other type of seizure (he has Lennox Gastaut). He would seize for hours daily. He would regularly be in status and would require large amounts of rescue medications and/or frequent ER visits and hospitalizations. His neurologist even prescribed the medication they administer only in epilepsy units to stop status seizures for Matthew for home use. His neurologist is at a major medical center and has advised that Matthew is one of his most difficult patient’s to treat. He currently takes 5 meds in addition to the oil.

With certainty, I can say that Matthew is way more alert on CBD and has had an overall reduction of about 65 – 70% of his seizures since taking the oil. He is nonverbal, so he can’t tell us how he is feeling, but he has way more energy, is far more alert and is walking longer distances with support than he was able to. He is almost 32 years old and has been seizing daily without relief since he was 6 months old. He has multiple serious medical issues, but without a doubt, his seizure activity frames our entire lives – what we can do, when, how he needs to be supported (ie if he is having a lot of seizures, all plans are cancelled, or if he is having a bad day, do we need to carry around an oxygen tank and suction machine, which skilled person will be supporting Matthew or do we have to take time off of work and care for him ourselves, etc. etc). I am so happy for him and our family to have found a product that actually works for him. We have always tried anything that the doctor had suggested in an attempt to help him. Our doctors were all supportive of Matthew trying this new therapy.

This financial aid does allow Matthew to obtain a new treatment option instead of relying on the old ineffective ones. We have been amazed at the effectiveness of the oil. Watching him have intense and horrible seizures everyday was the worst kind of helplessness – knowing that nothing we were doing was really helping to stop them, despite being treated by world class medical professionals. His expenses for supports, medical supplies (syringes, incontinence products, suction supplies, gloves, medication copayments, lifts, slings, wheelchairs, bath seats, wheelchair van repairs, etc. etc.), paramedical treatments (massage therapy, physiotherapy, music therapy) are so incredibly high.

We are firm believers that everyone has a place of belonging in their community and have unique ways to contribute to society. Matthew lives at home. Most people with Matthew’s level of care needs live in chronic care hospitals. We couldn’t live with ourselves if that was his place of residence so we have done everything we could possibly do and sacrificed incredibly to enable him to live a “regular” life, to belong in the community as a citizen. He is forging a new path to belonging, and we hope our advocacy and other efforts will make it easier for other families to do the same for their loved one, so that heartbreaking choices should not have to be made because of a mess of ineffective policies and red tape that continues marginalize the most vulnerable of our society.