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.
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!
This 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.
For me it is always being in tune with my body. Yesterday we were supposed to go to the mountains and go skating. I didn’t make it skating. Partial seizures started with a vengeance. It took heaps of CBD and THC to calm them down. I fought it and won. We went for a short drive and to the grocery store.
Today my whole body hurts. My brain hurts with jumping headaches. When I feel like this edibles and a medicated THC bath helps. If I go anywhere today it will be with my wheelchair. We are going to try a drive again today. At least the backcountry in Kananaskis is 30 minutes from our place. My husband who is fantastic will be doing the rest of the shopping and cleaning. I just wish I didn’t have to pay for what I did the day before. 💜
This makes me smile. If I don’t use cannabis zero fun. Try starting your day off at 3am because you can’t sleep. It is now 8am the partial seizures have started. So nauseated and my brain hurts. Do I sound like I am having fun? No worries because the THC will help with the nausea and brain pain. The CBD will slow down the seizure activity. Cannabis allows me to have fun! ✌🍁💨💨
My name is Shelley Thiemann and I have Generalized Idiopathic Epilepsy. This is me on a good day. I also suffered a status ellipticus seizure that caused brain damage just over a year and half ago. The only time my disability is visible would be if I needed my wheelchair because I have exercised induced seizures. Or if I have a Tonic Clonic seizures in public. Then it is very visible.
When I am medicating in public I choose to smile and take the high road. People are entitled to their opinions. However how you respond shows your class. I do not have to explain anything unless of course you are a police officer.
They are hard to hold onto when you are sick all the time. Mood swings push them away. You are not able to do the fun things you did before. The few that do stick around and new ones that you have made. Hold them dear because we all need a support team. Everyone needs a friend 💜
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!