Epilepsy

MRI Results

~ Shelley Thiemann ~ Leave a comment

The dreaded MRI test results.  It has been three years since my last MRI and was very curious to see if there was any change.  The last one I had showed that my left hippocampus had reduced by 80% and there was a large lesion on my right hippocampus. There was also tissue loss in the right temporal lobe.  At that time they also did a PET exam so they could light up my brain and see what is working.  It confirmed the earlier results, and that I would have difficulty with memory both long and short term.  I also have difficulty with speech, language, and some cognitive functions.

The exciting news this time is my brain has not lost any more mass.  For the past three years, I have only taken CBD & THC to control my epilepsy.  As I stated before I am unable to take any seizure medication.  What is optimistic for me at least is that there has been no change.  No change means maybe the CBD is working.  I have read several medical articles regarding this.  By no means is this a cure.  For myself and my type of epilepsy, it works for me. I still have seizures but they do not last as long.  The postictal phase is not as long either.

The one question that I get asked the most is “How do you stay so positive?”.  I try my best to keep a positive outlook.  Laying in bed crying for days still, happens.  I think it is good to get it all out sometimes.  Then I pick myself up and continue on.  Finding a purpose in life has helped me the most.  I love advocating for patients rights with CFAMM.fca4f293596def5139e83ee13c7910c7.jpg

My hope for the future is my next MRI is going to show tissue growth!  Then we will be making medical history with a plant!

My Crazy Summer

~ Shelley Thiemann ~ Leave a comment

08ccfea286068dfd7d5e4f721bdcad19This has been a summer that I will remember forever.  The end of June is something I look forward to all year.  My husband has the summer off and that means two months of not being alone.  So I start to make plans (that can be canceled) for our summer vacation.  I can not travel outside of Canada because I can not take cannabis across the border.  So my favorite place to go is Nelson British Columbia and the Slocan Valley.  I have spent almost every summer there since I was a child.  It’s a beautiful place that is so relaxed and friendly.  I can light a joint without being judged and that is a wonderful feeling.

The day before we are going to leave, I have a tonic clonic seizure (grand mal seizure). My husband caught me before I hit the dresser and did serious body damage.  The seizure lasted less than a minute.  That is the difference between epilepsy meds and CBD. I do not take any pills for my seizures and treat it with medical marijuana.  I still have seizures but less often and less severe.  I delayed our holiday for two days to recover.  I did not think that sitting in the truck for seven hours would be so painful.  Thank goodness for edibles because I would have never made it.

There are so many triggers for a seizure on holidays.  The heat is a big one for me. Anytime it goes above 35 degrees my epilepsy goes crazy.  I know how to handle it and yes staying in the shade and drinking heaps of water helps.  I also increase my CBD and I do not use alcohol.  After ten days of baking in the sun, I had to return to Calgary to order more meds.  I was helping my husband clean the truck when I experienced my first atonic seizure (drop attack).  Whenever something different happens with my epilepsy I tend to freak out.  Well needless to say that I did not look very good in shorts with multiple Hello Kitty band-aids all over my knee.  The next day we left again for Nelson.

It seems as soon as we drive through Creston all of my stress just slips away.  It was so nice to get back to the beach and just lay in the sun relaxing.  I must have been stressed about something because I decided that 6 am is a great time for a GTC (grand mal).  Scared my husband half to death.  I can only imagine what I must have looked like.  Well, that screwed up my day for rafting.  Laying on the beach feeling the pain slipping away slowly as the edibles finally kick in.  Took it easy for the rest of the visit and had to come home for a neuro appointment.

I met so many wonderful people who are a part of the cannabis community.  So nice to be able to sit down to listen to concerns and ideas.  One day I will move to the Slocan Valley as soon as I win a lottery.

Surviving the Holidays

~ Shelley Thiemann ~ 1 Comment

It is that magical time of year once again.  So many things to do and make.  There are so many parties to attend and friends to see.  Family obligations to see everyone and enjoy some festive cheer.  The tree is trimmed and our place looks like a Christmas card.  Sounds like every Christmas since I was a child.

Since my epilepsy has changed, all the magic of the holidays is gone.  I do not think I have cried this much in a very long time.  The holidays are a difficult for many.  I do know that I am blessed with family, friends and a beautiful home.  I do not have my health.  With my epilepsy and the huge amount of pills I took for three years affected my immune system.  Tis the season to catch a cold no matter where you go.  As you may know that changes my seizure threshold to zero.  Partial seizures are an everyday event now.  Those I can handle and treat with CBD & THC.

Shopping is a pretty big deal for me.  I do love the mall and picking that perfect gift.  Now going to the mall means sitting in a wheelchair to shop.  I get exercise induced seizures from walking too much.  Nothing is worse than having a tonic clonic seizure in public.  The lighting in some stores is to much for my brain.  If there are to many people that freaks me out as well.  People look at you with pity because my invisable illness just became visable.  All I want to do is just get out of there and go home. I feel safe at home and nobody is staring at me.  It is heaps of disappointment because I used to love doing these things.

I am very thankful to have an amazing husband who understands.  Last year he did it all as I laid in bed.  I was still recovering from a status seizure that affected my brain in horrible ways.  It was my grandsons first Christmas and I just wanted to be heathy for it.  Well that wish did not come true but we did make it special in a different way.  That is why this holiday season I had heaps of hope that I was going to feel fantastic for it.  Well that is just not in the cards for me.

So I am doing things different this year.  Plans with family are made and that is the only place I will go.  They understand if I am to sick to attend.  I started shopping online early and in the end its not all about gifts.  Time with the ones you love is what the holidays are for.  Depression is really difficult for many during this season.  I can get really down on myself because everything is not perfect.  Try doing little things like making something special for your loved ones.  Really all our families want is to visit with us.  I try to focus on the positives in my life.  My husband and family are the positives in my life.  My social media family is the other positive part of my life.  It is nice to know that you are not alone on your journey.  I would also like to thank my beautiful friend Kelly for understanding and always being there.  I can’t wait to meet her in person one day.

I wish you all the best over the holiday season!  Looking forward to 2017 and how the cannabis industry will continue to grow and change.  Take care and I wish you all the best!

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Licensed Producers in Canada

~ Shelley Thiemann

Congrats you now are legal to order cannabis!  Chances are your clinic has given you a list of all the licensed producers (LP) in Canada.  So how do you choose which one is best suited for you?  This step freaked me out and there was not a lot of help back then.  The good folks at Lift.ca have made this daunting task much easier.  They will go over which producers offer the best strains for your medical condition.  Most producers do offer compassion pricing and it is best to inquire how much of a discount they are giving.  It does vary and so far I am loving Aurora at 5 dollars per gram.

One of the main issues with producers is they are going through product very quickly.  So for example one of my main favs is God Kush by Broken Coast Cannabis.  Sometimes they have it and other times they do not.  This can be really frustrating.  So with my prescription I had it split between two different producers.  When one does not have what I need the other one will.  I do like to switch up my strains as I build a tolerance quickly.  Broken Coast is great about informing you when their next strains are coming out.  I have tried several different producers in the last year. So far I am very pleased with both producers. The strains that are coming out are improving and just remember go low and slow.

Having a positive outcome with cannabis depends on you.  You need to do your research and it is not a cure for epilepsy.  CBD does help control seizure activity but not on its own.  You do need a small amount of THC to get the proper effect.  With my form of epilepsy this is the only treatment that works.  Finding that perfect ratio between CBD and THC can be tricky.  Always remember to go low and slow!  Yes I know I wrote that twice because it is important.  It really is trial and error when deciding.  That is where the government should have made things a little bit easier for us.  They are making changes but not fast enough.

The product that you purchase from your licensed producer is a medical tax deduction.  I have tried multiple times to have my medical marijuana covered by my insurance company or my husbands.  Both have said no to coverage.  To medicate properly for the month the cost is around $900.00.  The thing that bothers me the most is my insurance company has spoken publicly and said that they will cover it.  Well I have a letter saying they will not.  Even through this is the only treatment that works for my epilepsy.  So while the government moves forward with legalization, I hope they keep the medical marijuana patients in mind.

I have tried multiple LP’s and I know what products I like.  If you are unhappy with your current LP you are not stuck with them.  You are allowed to change producers and split your prescription.  Until product becomes consistent and available it will be a bit of a challenge for us.  That is why we need to talk about our experiences with LP’s and review your products on Lift.ca.  Products will continue to improve with more selections available.

I hope that this has helped you somewhat.  It is difficult for me to remember everything so my cannabis journal is important.  I write down what strain, percentage of THC & CBD, cost and also how effective it was.  This is a great resource tool and the best way for me to track dosages too.

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My letter to Epilepsy

~ Shelley Thiemann ~ 5 Comments

Epilepsy

You gave me wicked seizures that damage my brain and body.  Robbing me of presious memories and all my independance. Pain on levels I couldn’t imagine.  I fake a smile through the tears and say “I am fine”.  Taking pills for pills, always changing.  Pills that do not help and make me so sick.  The seizures keep coming all day long.  Why are you doing this to me?  Laying in bed to sick to get up.  So nausated and I can not think with all the brain pressure.  So sedated with no feelings left.  Death would be better than living in this hell!  Giving up means you win.  I am not that easy and I am going to fight you with everything I have.

The neurologits have told me that there are no medications to fight you.  They have told me that there are no surgeries to help me control your demons.  So I decided to fight you myself.  I did hours of research on what other treatment was available.  CBD kept coming up all the time.  Now how do I obtain this wonderful oil?  This was when there was not a lot of information available.  I found a Medical Marijuana doctor that said he would try and help.  Epilepsy you have taken so much from me and now I am going to kick your butt.

Each day is still a fight.  I may not take the evil pills anymore but their side effects will last my lifetime.  The seizures are less often finally.  I have more good days than bad ones.  I feel alive again!  I will never be the same as I was before.  I smile with no tears now.  Cannabis is giving me a chance to fight your demons epilepsy and I am going to win!

I HAVE EPILEPSY BUT IT DOES NOT HAVE ME!

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