My name is Angela… and I am a strong and beautiful woman who happens to have Epilepsy

F51D6213-A08F-4FF6-8F07-40ED5A978C3AIf you are reading this, you probably either know me and are following my journey or you are researching and connecting with others who may share your story or the story of a loved one.  Either way, I’m glad to have you here.  I have been contemplating a blog for quite some time as a place to go to log my daily struggles with Epilepsy.  I spend a lot of time researching Epilepsy and reading forums and the stories of others who may be like me.  I often find that many people have questions that go unanswered or they just want to connect with people who truly understand what this life is like.  I have been living with Epilepsy for 32 years and I have a lot of stories to tell.  If I can help even one person through this blog then I will feel highly accomplished.  Plus – I am sure that my life connections who follow me on my normal social media channels are pretty sick and tired of all of my posts about medicines that don’t work, brain fog, cuts and bruises, and all the other struggles of an Epileptic.

So who am I?  My name is Angela and I live outside of Atlanta… Cumming, Georgia to be exact.  I am a wife, a mom, a dog lover, a student, a sister, a friend, a jokester, a crossword puzzle fanatic, and an ”Epileptic”.  Notice I didn’t mention that I’m a hard working career woman.  That’s because I have been on a medical leave of absence for 9 months after a really rough seizure made me step back and realize that if I didn’t step back and take care of me then I would sooner rather than later not live to be any of those things.  My entire life I have desperately tried to never let my E define who I was.  I wanted to pretend that it was just some random thing I dealt with from time to time like a sinus infection or a stomach ache.  I didn’t like to believe that it was a part of who I am.  At 39 years old (oh God… that’s so dangerously close to 40) I have finally accepted my fate and decided that while it is something that I will live with the rest of my life, I have to fully embrace it in order to take control of it.  I have Epilepsy, but it doesn’t have me.

I was diagnosed when I was 7 years old.  This was when I had my first Absence seizure, though I always knew it as a Petit Mal.  I had my first Generalized Tonic Clonic, or Grand Mal seizure, 2 years later.  We knew very little about epilepsy back then.  There were very few medications available and hardly any research done or published to truly understand what it was.  All I really knew was that I was different than other kids and I really hated it.  More on that in future posts.  I had seizures through my teenage years and through my very early twenties.  Ironically they stopped when I was 23 and I thought that I was finally done with all the BS.  After all, my neurologist did tell me that I would probably “grow out of it” like it was a pair of shoes or something.  Then my 30s hit and back came the seizures.  Only a little bit at first and I refused to see a doctor or take meds or even accept that my shoes did in fact still fit.  As the years have passed I have been having more seizures than ever before and it has become part of my daily life.  That’s where I am now.  I will definitely share more of my story, so if you are interested please follow along.  I look forward to sharing my past, present, and future with you all.  And please – feel free to share yours too!

“I’m not an epileptic but you’re an arsehole.  I’m important.  I matter. I can do anything.  I’m a sexy, strong woman that happens to have epilepsy.  Do you get it?  I have epilepy but it’s not who I am.”  – Ray Robinson, Electricity

Continue reading “My name is Angela… and I am a strong and beautiful woman who happens to have Epilepsy”

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For Heavens Sake – Just Legalize It!

GeorgiaVoterI firmly believe in voting because I feel that you have no reason to be upset about anything that happens within our country if you have not exercised your right to do your part and vote.  This doesn’t mean that you can’t feel angry or discouraged by the political happenings… it just means that you didn’t enable by not letting your voice be heard through your vote.  I just got back from voting and I do hope that my vote makes a difference!

thOne of the questions on our ballot was whether or not you feel that marijuana should be legalized in the state of Georgia and if you feel that it should be able to be grown/sold/etc.  It in our state Medicinal Marijuana was made legal a few years back for 7 medical conditions, which has now increased to 15.  This was actually a big step for our Bible Belt Conservative state as there are only 20 states that have legalized it for medicinal purposes.  While this was a very positive move, the law got passed in sort of an odd way.  While it is legal to use it for Medicinal Purposes, you do have to have a registration card that has been approved by your doctor and then issued by the state.  It is also not that easy to find a doctor who is registered to enroll you into the registry because they have to take the steps to get enrolled, which means they have to truly believe in the benefits. This is fine and quite normal.  This means that your doctor cannot PRESCRIBE it, but rather confirm that you do have the condition and that they believe that you should be eligible to register.  The card simply keeps you from getting arrested if you have in your possession less than 20 ounces of CBD with less than 5% THC.  The problem?  The law provides no provision as to how you may legally obtain the oil.  It is illegal to grow it.  Dispensaries are not legalized within the state.  Even though we have legalized it, the possession of it has not been made simple like in other states.

legalize-regulate-round_biggerI know that many people think that even medicinal marijuana is terrible.  I personally don’t think that these people truly understand the value that it provides for these patients.  Does it cure the condition?  Nope.  But it certainly makes it where you can live with it more comfortably and without all of the side effects that come with traditional medications.  With Epilepsy, for instance, I find that it helps me with the things that trigger my seizures.  It helps me sleep better, it reduces my stress and anxiety levels, and it helps with the many symptoms that come with my Anti-Epilepsy drugs.  My seizures are not controlled with my drugs even, but I notice a huge difference in how I feel when I use the CBD oil.  There are many Epilepsy Warriors out there whose seizures are completely controlled by taking the oil or by smoking marijuana.  Why deprive someone of something that can legitimately help them?!?

Healing with Medical Marijuana

A book about the general benefits of MJ

I certainly tend to be very liberal in my views and my political standpoints.  It doesn’t mean I am a “tree hugger” but it does mean that I believe in doing things that are right for humanity.  I believe in the right to choose how you should treat your body, who you should love, and how you impact the world around you.  I understand why many people would believe that marijuana is an overall terrible thing and should not be legal for recreational purposes.  I do think that it is important that people understand the facts about marijuana.  And ultimately, it is something that you can make the choice to do.  If you don’t believe in it, don’t do it.  This is much like alcohol or cigarettes which are legal with some regulations… only with far less health inflicting factors.  Did you know…

  • Marijuana has been proven to help with numerous medical conditions and alleviates many of the side effects caused by medications.  In many instances it allows patients to remove harmful pharmaceutical drugs from their daily regimen.
  • The War on Cannabis expenses over $42 MILLION per year in the U.S.  Imagine if those tax dollars were to go to things like educating our children or bumping our economy.
  • In addition, arrests of marijuana possession and distribution would stop crowding our jails.  Guess what?  Our tax dollars also go to funding our prisons.  Imagine if we were also spending more time catching the criminals who are actually committing hurtful crimes!
  • DRUG CARTELS – need I say more?
  • Marijuana is NOT addictive and is not harmful to your body like the nicotine in  cigarettes or the damage that alcohol causes to your liver and heart.  
  • It is NOT a gateway drug.  In fact, studies show that marijuana use has increased over the last several years while the use of cocaine, heroin, and meth have decreased.
  • MANY users are people that you would never suspect, even people that you have strong admiration for.  “Stoners” don’t always look like Cheech and Chong.  They are your CEO’s, your church goers, your next door neighbor, your favorite actor (love Jennifer Aniston or Morgan Freeman?  YEP!).  
  • And there’s this…..

 

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There are so many reasons to just go ahead and legalize it.  Let the government make tax money off of it.  Control and regulate the sales.  Don’t want to participate?  DON’T!  But don’t make it difficult for others to obtain this overall harmless drug.  Help those with Cancer, AIDS, Epilepsy (ESPECIALLY CHILDREN), Glaucoma, Multiple Sclerosis, and other horrible conditions live more comfortably.  PLEASE!

Friend Outings and Doctor Praises

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Last night some friends and I went to the movies to see Deadpool 2.  I truly love friend outings and I wish I felt like doing them more frequently and that our schedules jived more often.  I don’t really have a lot of friends but the ones in my life I have had for years.  They have been through the ups and the downs with me and love me no matter what.  That’s really important and when you find that in life you need to treasure it and hang on tight!

While I was at the movies I noticed that my VNS magnet was beginning to peel on the surface.  In several of my Epilepsy Support groups there have been questions about whether that was a sticker or a protective coating.  The answer my friends is…. that is for sure a protective coating and it should NOT be peeled off!  I did peel mine off because it was sticking out and being pretty annoying so I took it off.  Let me tell you – that thing was stuck on there with super glue or something and now my magnet looks pathetic!  It also doesn’t really feel as strong as it had before either but it is possible that is just my imagination.

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My first step was to contact Cyberonics.  I went to their website and eventually found a support area that stated that if you have issues with your magnet that you should contact your doctor.  I sent an email directly to the Nurse Practitioner who has been programming my VNS and she answered me back in less than 2 minutes to let me know that she would have one ready for me when I come in for my appointment next week… no charge (which I would hope not since I have only had this for one month).  Regardless, I love my doctor’s office and how well they take care of me.  Any Atlanta folks out there – Emory Neurology:  Epilepsy Clinic.  They are wonderful!

This made me also think about stickers and how one could attach cool stickers to their magnet if they so chose to do so in order to customize their VNS experience.  I’m not really sure what stickers I would choose but it also reminded me to order some things from Amazon that I’ve had in my wish list for a bit that promote Epilepsy Awareness.  I have a few events coming up that I plan to use as an opportunity to fundraise as well as support awareness.  Starting May 26 I am doing a Summer Fitness Challenge with the Epilepsy Foundation. Not only can this help me personally but is also an opportunity to raise money for the Foundation.

Consider making a donation if you can or join the cause!https://epilepsyfoundation.donordrive.com/index.cfm?fuseaction=widgets.300x250thermo&participantID=15012

I am also doing a Magnolia Run/Walk for Epilepsy if I feel up to it.  If not I will be there cheering on those who are able and will help spread awareness.  I am excited to try to spread the word in any way that I can!  Here are some of the awareness items I found to give to others:

Some pretty awesome wristbands.

Stickers – because they are more cost efficient and who doesn’t love stickers??

I dig this tee shirt

And this one for kids!

Make it a great day today!

Take Me to Church… Or Not?

This is definitely a sensitive subject, but what better day than a Sunday to discuss.

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For many years I have self proclaimed my religious status as many things.  As a child my mother did not practice religion but she was raised in a very strict and intense Seventh Day Adventist home as did my father.  My parents were not married for any part of my life that I can recall, but in the summertimes until my Grandma died my brothers and I spent time with my Dad’s parents in Florida and we attended the Seventh Day Adventist Church with them.  I was not really old enough to know much about the religion except that we did not eat meat, the only jewelry that was worn was the chain that my grandma wore around her neck that contained a gold clock (because it was functional, not adorning), and that every Friday night at sundown we had to turn off the TV until sundown on Saturday night.  I knew that before every meal and before every car trip my grandpa said a prayer that always started with “Dear Heavenly Father” and ended with “In your precious name, Amen”.  I also knew that my Go-Go (my mother’s mom) had all but disowned her because my mother was a lesbian and was going to rot in hell.  We didn’t see much of Go-Go.  Ever.

My dad and stepmother got married in a Methodist Church that I am sure that my stepmom probably went to her entire life.  The times that we would visit with them we would go to church with them but I can’t say that I ever felt comfortable.

When I was in middle school I was invited to go to church with my friend, Maria.  It was a baptist church in Birmingham, Alabama where we lived and I will say that this was the first time I ever found a church family that felt like a home.  I’m not sure that I enjoyed it as much for the actual religious factors as much as I enjoyed the camaraderie of the youth group friends that I had made.  I met my first pseudo boyfriend at this church, I went on my first “vacation” away from home with my closest friends, and I sang in the church choir every Sunday and it is probably where I picked up my ability to harmonize from a member of that choir who had the most beautiful voice.  I also made the decision to be baptized in this church and when the leader came to my home to talk about my decision I have to say that I felt incredibly uncomfortable and judged because of my home life.  My mother did come into the church for my baptism and she shed some tears and then left.  After that I somehow didn’t really feel all that comfortable there.

Going into high school, one of my dearest friends Terri (the sister of the one who originally invited me to church) invited me to join her at a different church.  She had begun going there and really loved how contemporary the church and the services were.  It was a non-denominational church that was not in a church building and for our youth group services we met out of someone’s home.  We didn’t sing out of a hymnal but we sang praise songs from the heart and there were generally people playing the acoustic guitar and the drums and whatnot to replace the organ and piano in all the churches I had ever attended.  It was at this church where I met my first REAL boyfriend and I would get giddy when he would hold my hand in church.  The pastor was a cool, younger family man who spoke about the bible but in a way that it better related to things that people faced in their everyday life.  I have to say that I thoroughly enjoyed going there.  Again, I don’t know that I felt a strong and powerful sense of “the holy ghost” as much as I loved being able to spend time with others who had a passion for life and loved one another without judgment.  I never told anyone there about my mother and we rarely even talked about things that made my stomach turn to a level that I felt like I wanted out.  When my mother died, however, I began to question everything that I had ever been taught about religion.

“Work out your own salvation.  Do not depend on others.” – Buddha

I was 17 when she died.  Her mother, likely from remorse that she had for being such a horrible person to my mother for so many years, came to the hospital to her death bed.  I remember her being by her side trying to “pray the gay away”.  This repulsed me.  She prayed for her salvation.  She prayed that God would heal her.  She still died.  I have to say that aside from being really angry with her for even showing her face at her daughter’s death bed when she wouldn’t show her face in her life to truly support her throughout the years, I also became very angry at “God” and I really began to ask some serious questions.  If this loving God really did exist then why did He take my mother away from me?  If he was mad at her for being “gay” then why did he make her that way in the first place?  She wasn’t making a choice to be sinful, she was brave enough to be her true self.  So why did that make her “bad” and why did she need to ask for forgiveness for being who she was – an amazing, brave, and loving woman?

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I grew to abhor anything related to religion.  I hated when people would tell me they were praying for me because all I could think about was that people prayed for my mom and she still died.  I hated all of the judgment, all of the hypocrisy, and all the fake BS that surrounded organized religions.  I was nothing shy of angry at any all things related to the “God” that was allegedly out there.  For awhile I would have said that I was atheist and then I took a gut check and felt I was really more agnostic and that’s how I referred to myself for many years.

“This is my simple religion.  There is no need for temples; no need for complicated philosophy.  Our own brain, our own heart is our temple; the philosophy is kindness.” – Dalai Lama

I had a good heart.  I loved until people gave me a reason not to.  I accepted the beauty of the earth no matter where it came from.  I accepted that people believed many different ways and I was ok with that.  I didn’t want religion pushed on me.  I wanted to be able to live my life knowing that I was a wonderful person.  I believed in karma.  I believed that if you put good out in the world then good should come back to you.  I believed that there was something out there that was bigger than myself.  I just didn’t really know what that was. I am speaking in the past tense here, but I suppose that for the most part I still believe most of these things.

Screen Shot 2018-05-20 at 10.52.32 PMOnce a friend of mine loaned me the book The Celestine Prophecy and it was like I had this huge revelation.  The book is about a journey of a spiritual awakening.  It essentially speaks to a shift in the consciousness of the world where we once explained everything through the powers of the divine, then went to explain the world through science, and when neither of those satisfied the answers of the unknown people progressed to focusing on their own self and energies.  When I read the book it spoke to me in an enormous way.  I still read it about once a year and every time I do it speaks to me in a different way and I see things in myself and about the world that I seem to need at that particular time.

Intro to Zen Buddhism

After I read that book and after I explored within my soul a little more I felt that what I believed was more to the likening of Zen Buddhism.  I never explored this practice with others and it certainly never became my official “religion”, but it is certainly where my heart and soul most closely relate.  I do enjoy meditation, which I believe is mostly what people do when they “pray” anyway.  I reflect on how I can be a better me, how I can better serve others, and on finding peace within.  I think that at the end of the day this is not terribly different than what many organized religions preach.

Recently I posted on a website that links all of the neighborhoods locally asking for advice on a local church.  I began thinking about the youth groups that I congregated with when I was a teenager and how many great friendships I had from those groups.  I thought about Caty, my daughter, and felt that perhaps it wasn’t fair to her that I have never introduced her to organized religion and therefore she sometimes says negative things regarding “church”.  She is changing school next year and will be starting her Junior year of high school at a completely different school in a different area knowing nobody.  I respect the fears that she has and understand how hard that is.  I posted on the local website asking for the following…

“Hi!  My family moved to the area 6 months ago and we are looking for a local church family.  We prefer a non-denominational and a community with full acceptance practices.  I have a high school daughter who will be attending Forsyth Central so a thriving youth program for her to meet future classmates is a plus.  Thanks in advance!”

I didn’t really think that my posting was odd and it took a lot for me to take this step to find a church to take her to.  I began to get responses to my post.  Some were very kind responses where people invited me to their church.  However, most of the responses were focused on my phrase “full acceptance practices”.  Many were quick to tell me that if I am looking for a place that “accepts the gays” that I’m gonna have to go in to Atlanta to go to the church with the sinners.  The comments didn’t get much better from there.  I know that these people are not a full representation of Christianity as a whole but to feel condemned and judged before even walking into a church felt pretty horrible.  I remembered the horrible feelings of a grandmother who condemned my mother or the people who said backhanded things to me in my 20s when I was raising a child “out of wedlock”.  I felt the pit in my stomach that started my feelings of resentment towards an organized religion or the Christian church to begin with. I have not gone further in my search and perhaps I will get that push to feel like I should again, but as for now I will accept my meditation practices and my belief in putting good out in the world.  No need to pray for me – just do something kind today.

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Giving Back and Other Things That Make You Feel Good

Today was a nonstop day but DEFINITELY better than yesterday! Overall it was one of those days where you feel productive and can end the day saying “I made a difference today”. Those are my favorite.

I had been feeling like many things have gotten away from me with all the madness going on so today I focused my energy on making a difference and doing things I enjoy. This year I will turn 40 and right after my last birthday I made several commitments to myself to fully abide by a set of rules to send off my 30s with a bang. One of those things was to remind myself daily how I was going to make the day fantastic and do reflections at the end of the day on how I did. I purchased Gratitude Journal that I really do try to fill out daily to keep myself on track. There’s a section for what you’re grateful for,, how to make the day great.. a daily affirmation.. and then a reflection at the end of the day with amazing things that happened and how you could have made the day even better. It really has been a great way to keep me in check. This morning I began my day with a little gratitude and I set some goals.

I committed part of my day to giving back. It had been a few months since I had given blood. I really try my best to give whenever I can. I just feel like if I or someone I loved was in a situation where we needed a transfusion then I desperately hope that blood would be available to save our lives. For quite awhile I was unable to give because when I was taking Topomax it impacted my iron levels. My normally very healthy hemoglobin count was way too low to be eligible to give blood or platelets. So glad I’m not dealing with that particular issue anymore! So anyway, there was a blood drive at our local hospital so I went and did a Power Red donation. Essentially this type of donation uses an apheresis machine to take your blood and then separate the red blood cells and the platelets and plasma. The platelets and plasma are then entered back into your body after the red blood cells are used. Type O donors as well as anyone with an Rh- blood type are highly desirable for this type of blood donation. So… I took the time to donate as a mission to help others today.

I also got a $5 amazon gift card and a free t-shirt. Bonus!

I did spend a large portion of the day dealing with dad issues. Dealing with MY dad issues are especially exhausting yet relieving knowing that he is being helped. And trust me… he needs some serious help! I made a doctors appointment for him for next week in an official attempt for a doctor to declare him as having dementia so we can take some next steps.

There were a few other details in my busy day. Caty and I had another date after school today only this time it was also with my best bud. We went to the movies to see Book Club and then went for dinner. The movie was cute. It was definitely one where had you not read the Fifty Shades books that you may not totally get all the references and innuendos. (Not necessary to have read them or seen the movies to enjoy a little Jane, Candice, Diane, and Mary in some humorous and charming banter. Also, who doesn’t love some Craig T. Nelson and why is Don Johnson still handsome?!?) Overall, we enjoyed the movie! It was mostly really great to see Debbie and talk, laugh, and catch up on life.

Afterwards I called and talked to my dad for what really felt like was forever. Early in my productive day I called and made him a neurologist appointment (he has MS). I called several land/home appraisers to see about having his property appraised. I would like to sell it all and get him away from that town and all of the people stealing from him and creating issues for him and his home. He seemed very open to both which is great. I just hope that I can keep him out of trouble by getting him a place closer to where I live.

Heading to bed but seriously check out that gratitude journal. There’s also an app if you prefer that I believe is called Five Minute Journal or something like that. It helps a lot when you start feeling overwhelmed by things in your life. It starts your day off making a plan for awesome things to happen in your life. It helps you to remember the things in your life that are good when it’s seems your ship is going to sink.

Too tired to share the rest of my awesome day but I am so glad that I’m getting able to end the day on so many positive notes. I believe I’m also set up to sleep like a baby tonight which hasn’t happened in awhile. Good night all. 💜

I’ll have the great day appetizer. And for my entree… chaos please!

Today started off to be a fantastic day! I woke up feeling refreshed and well rested since I got my meds in me last night. I had an incredibly productive morning and got so much done. I had my delicious cup of coffee with a shot of MCT OIL to get my caffeine in and my fat intake up.

I worked on the exhaustive yet exciting process of getting our (very) small business up and running with business license applications and trademarking and tax IDs and ALL the things. I worked on the shop website a little. P.S… I have a lot of time on my hands most of the time and I need an outlet for my stress and I have a strong desire to help others so I decided to begin making alternative bands for the VNS arm magnet. In addition, we will be making and selling dog leashes and collars for service, seizure alert, and emotional support dogs. More to come on all of those things. I expect to net no profit on my business but I do love to help others.

But then… the phone calls began coming in. The first was from the insurance company who handles my leave from work. The second was from the insurance company handling our car accident. If you didn’t read about my insurance frustrations you can catch up here.

Short Term Disability: The account rep called me today to let me know that my extension my doctor had requested had been approved… for 3 days. And now they are requesting additional paperwork from my office visit yesterday. It has been explained to them SO MANY TIMES that my two week interval appointments are only to increase the frequency on my VNS. The person doing this is not my Neurologist and they are not assessing my health at this time. It’s literally an in and out visit to the office. But they seem to think regardless of all the times myself and my doctor have told them that my doctors appointments are not regular appointments where my health is being evaluated. If this continues it means I would go through this whole process every two weeks of not getting paid and explaining and having my doctor call and then getting approved. My Epileptologist is the head of the Neurology teaching program and Emory University Hospital as well as sees patients. Her schedule stays booked out 6 months in advance because she’s in such high demand. She really doesn’t have time for all of that crap. So I ended up sobbing in frustration and demanded to speak to a supervisor. It finally got (mostly) resolved but it has taken so much out of me. I’m really tired of the fight.

Car Insurance: So someone hit us two weeks ago and the people who did so have this podunk insurance company. It has been quite irritating working with them. First they said… after a week of trying to get in touch with them… that someone was going to come out and look at the car. The guy called to arrange it and his schedule was booked for over a week out because he is apparently the only guy contracted for them in the entire state of Georgia. I called them back and told them how ridiculous that was and asked for an alternative solution. They first told me I could take photos of the damage and send it to them and they would have an in house rep review the damages and provide an estimate. This sounded ridiculous to me because photos only show so much. They then told me I could take it for my own estimate. I was told that only if the damage was more than $3000 would we have to have another quote. This is what we did. They quoted us $2200 to repair the damage. I emailed this quote to the company along with the photos the collision center took. This was last Friday. I FINALLY heard back from them today, Thursday, and they said they accepted liability and they were sending me a check for $1200 to repair my vehicle. WHAT?!? I’ve now got to pay out of my pocket to repair the vehicle that SOMEONE ELSE DAMAGED?!? She told me their in house guy reviewed my photos and gave that estimate. They gave me options, right?? Their estimate didn’t include any of the damage that couldn’t be seen by the photos. She stated the check is being processed and will be mailed in the next couple of days to be received by me in about a week. So now I’m waiting another week to take the car to the shop with a check a grand short of the repair amount?? I don’t think so. I won’t go into the play by play but basically I had to pitch a fit again and finally get the solution I deserved. It will still be about 5 days until we can take the car in for repairs but at least we are getting somewhere and they will now cover all repair costs and give us a rental until it is repaired. It so didn’t have to be that frustrating.

I did go to Home Depot to destress a bit after handling those things as well as a little bit of a friend-mergency. I bought potting soil and flowers to plant in some hanging baskets and a planter on my front porch. Though my brain fog meant that I completely forgot half the flowers I intended to get and several other things I was supposed to buy, I was still glad to have those purchased and almost ready for the project in the next few days.

My husband and I then took our sweet rescue baby to the vet who has had a TON of health issues since we brought her home, including a back leg that was completely snapped in half when we first rescued her. This time she had been limping and holding up her FRONT paw so we took her in. She has managed somehow to break her foot and also has a bone spur in her paw. Poor baby girl has had it rough.

I’m about to go up to my meditation room and get some relaxation time in before bed. I really need to destress after this day and try not to cause myself more seizure issues. I’m aiming for a much better day tomorrow!

Important Life Lesson… Take Your Meds!

The last few days have been pretty rough for me so I’ve been a little silent. I started having a series of bizarre things happening to my body and I couldn’t quite get a handle on it. I essentially stayed under the covers for 4 days and tried to sleep the symptoms away. Cuddling with my adorable and snuggly pups wasn’t so horrible though!

It started on Saturday with Myoclonic Seizures. Of any of my seizures, this is the kind I would generally rather have. Everybody experiences Myoclonus – ever had the hiccups or perhaps started to fall asleep and then your body jolted awake? Had that weird eye twitch thing going on? (I hate that!!!) Don’t worry, you weren’t having seizures but those would be examples of Myoclonus. It’s involuntary muscle shakes, jerks, or body spasms. When you have Myoclonic Seizures it feels very similar. It’s just that abnormal brain waves trigger muscle spasms or jolts in your body. Unlike my other kinds of seizures, these involve full awareness and consciousness (if you are awake, which you usually are). You know it’s happening, you just can’t control it. It’s not that big of a deal if it just happens every once in awhile. Mine started Saturday and happened all day with a few jerks an hour in my arms and legs. I was also having bizarre dreams all night that night and woke up feeling more exhausted than when I went to bed. Each day got progressively worse. By yesterday the jerks were happening constantly and I was at the point where my body was beyond exhaustion but I couldn’t sleep. When I could finally sleep, it was almost haunting to do so because I was having really strange dreams that would turn into dilutions. Last night I laid in bed until 4 am having seizure after seizure. My head hurt so bad and I became beyond aware of muscles in my face and other areas of my body that I realized I take for granted even exist. You know when it’s really quiet in a room and the smallest noise sounds so very loud? I suppose it was the same with all of the twitching and jerking – I just laid in bed and experienced them and my mind wouldn’t turn off.

While I was thinking about ALL the things to get my mind off the twitching, it occurred to me that last week I ran out of one of my medications. I had sent a request to my doctor’s office to refill it but they never did. I knew I didn’t fill my pill box with them because I set the bottle out when I ran out of them to remind myself to contact the office again. However, like many of my thoughts it quickly escaped me and I was just on auto pilot taking the pills in my am/pm box. There are SO many pills that I take that one missing easily goes unnoticed. This medication is also one that I originally started taking for my anxiety and panic attacks because my body became immune to Xanax. I began taking Klonopin instead for constant release of the drug where Xanax is more of an emergency fast action kind of drug. I was taking Klonopin for my severe anxiety, but it’s also an Anti-Convulsant drug. Apparently it was helping to control a lot of my Myoclonic Seizures because no longer having it in my body was causing them to come on with a vengeance.

“It’s fine to celebrate success but it is far more important to heed the lessons of failure.” – Bill Gates

I had a Neurologist appointment today to amp up on my VNS so I was able to have her refill my prescription so I could get back on it tonight. I very rarely ever read drug literature anymore because I have read so many. But today I read the papers that came with my prescription and it reminded me of the thing I definitely knew and hope will not happen again. Never just cold turkey stop taking these beastly meds because it causes serious problems. My seizures that wouldn’t stop, dreams that were turning into bizarre hallucinations, fever like symptoms, and other awesome things that were happening to me for the last 5 days quite likely could have been avoided.

On a solid and positive note, I do have some things to celebrate. I had my VNS adjusted today and I’m doing ok so far with the increase. Even the smallest adjustment made a big difference in the way my voice sounds and this feeling almost like something is lodged in my throat. That sounds really terrible actually, but it is far better than the side effects I have from all those ridiculous medications I poison my body with. We have a long way to go before we get it to the levels we want and I’ll probably seriously sound like a robot by then but I’m excited for the possibilities.

I am also very happy to announce that I have lost 7 pounds since last Friday!!! I do remember before when I was on a Keto diet that in the first month I lost a lot of weight before and then it began to balance and the weight loss was slower. I’m sure right now I’m getting rid of a lot of toxins and water weight. Either way, it’s definitely exciting to look at the scale and see positive results from the changes you’ve made. I wouldn’t be mad at losing a pound a day for a few months!

Tonight I hope to get some good sleep. After taking my meds I can definitely feel a decrease in these stupid jerking limbs. My plan for tomorrow is to wake up fully rested and plant some flowers in the hanging pots I bought for my front porch last week. I am ready for something bright and cheery!

Don’t Forget to Call Your Mama… I Wish I Could Call Mine

“Call your mother. Tell her you love her. Remember, you’re the only person who knows what her heart sounds like from the inside.” – Rachel Wolchin

I have to admit that a lot of holidays have never really been a big deal to me. I do love Christmas and if we can call “fall” a holiday then I definitely like that one too. I suppose that’s actually more Thanksgiving, which I also never cared about until I met some amazing friends 15 years ago who made it special. All of the others are not really ones that I get excited about. Not even my birthday. In fact, I married my husband on my birthday so we could just celebrate 2 days in one… except we never really actually celebrate either.

I used to dread when Mother’s Day would come around. I lost my mom when I was 17 and it just always reminded me how much I desperately wished I could tell her I loved her. Even when I became a mom I wasn’t really a fan. My daughter and I had a special bond every day so I didn’t need an extra one to make being a mom feel special. In addition, I was a single mom for over a decade so I used to always get special messages from people on Fathers Day too because I took on the “role of dad” too. I just found that to be sort of insulting even though I knew people meant well.

The last several years I have actually wanted to celebrate Mother’s Day. Perhaps that’s because Caty is now old enough to truly understand what it means and because I am married now so perhaps in my head he should celebrate the things I do in our household and for his kids too. Many of the last several years I have just found myself to be disappointed because the day is just an afterthought. An “oh yeah… happy Mother’s Day”… usually after all the social media posts have been made about how much people love their moms.

I don’t mean this in self pity. I know that my daughter loves me dearly and I know that even if he we never says he does, my husband appreciates the things that I do.

I think the reason it probably bothers me is because of the way I felt after my mom died. I’m not sure I ever gave her a Mother’s Day card and I sure didn’t tell her enough how much she meant to me. It didn’t bother me until she died. Then the holiday just haunted me and made me long to talk to her just once more. When Caty was born I would also glance through the Mother’s Day cards at the store and end up in tears because it was a reminder that she would never meet her beautiful granddaughter and that Caty would never truly know how wonderful she was. Caty was lucky enough to have a Granny… my stepmother who loved her to pieces… but it just wasn’t the same.

As I write this I am bawling my eyes out and I think about how short life truly is. I could have a seizure any day in a dangerous place or die from SUDEP or Status Epilepticus and leave her without a mom too. I won’t lie. It scares the shit out of me.

Growing up, my mother always talked about being related to Lewis Grizzard and she had all of his books. It never meant anything to me until she died and I went through her things. There was a book called “Don’t Forget To Call Your Mama… I Wish I Could Call Mine”. When I finally felt that I could, I read this book and I laughed and cried and all the things in between. It touched my heart. I still have that book and I read it at least once a year. So on this Mother’s Day I will share the same advice to you. Tell your mama you love her. Call her. Visit her. One day you may not have the chance.

And to you moms out there, enjoy your day!