The Blog

Never Quit

I had intended this morning to write about SUDEP (Sudden Unexpected Death in Epilepsy) because it is something I fear every night, or should I say every morning. However, that subject, although a very important one, has to wait.

Like every day living with someone with epilepsy, today will not be how I envisioned when I woke up this morning. I’m sure later today will not be as I expect it to be now. So all I can do is roll with the events of the day and never quit.

Ryan – counting down to surgery day.

Today I woke up to a dark room and Ryan still sleeping, when usually lights are on and Ryan is working out or on his way to work out. I started getting ready for work and gave a sigh of relief when Ryan started to stir in the bed (hence the SUDEP talk).

Even though he was awake, Ryan looked rather out of sorts the rest of the morning. Feeling the same way he looked, he made the decision to stay home from work. I, on the other hand, made the decision to go to work. We never know when a seizure can happen or if it would happen so off I went.

I won’t say I made the wrong decision but I would say Ryan made the right decision. A few hours into my work day, I get the message from Ryan he has been having myoclonic jerks and possible absence seizures. With the rescue med in his system, I come home. Again I breath a sigh of relief when I find Ryan in bed, safe, and sound.

As I said, this is not the day we thought it would be. All we can do is look at the good in our lives and keep going in the new direction the day is heading. The wind may turn again such that the day gets back on track. If for some reason it doesn’t that doesn’t mean we won’t stop living life and doing what needs to be done.

Never quit. Keep moving, keep sane, keep loving, keep educating, keep fundraising, and keep counting down to a hopeful cure…31 days to brain surgery.

Just Another Day with Epilepsy

It’s 33 days until the brain surgery that may or may not cure Ryan’s epilepsy. Today was just another day to countdown.

Maybe it was the bad night’s sleep (for both of us). Maybe it was the stress of work or the concern over the sick dog. Maybe it was just Epilepsy generally. There are so many things we can point to but we don’t know for sure what caused Ryan to wake up with myoclonic jerks. Even after morning meds and a rescue med, he still had some minor jerks.

At least as far as we know that is all he had. I felt terrible leaving Ryan but I had a lot on my plate at work that also needed my attention. Absence seizures have been more frequent lately. That could be a good or a bad thing. Ryan would have no way of knowing if he had one unless he happened to drop something when turning his head and looking like he’s daydreaming. When I’ve found him in the middle of an absence seizure, I’ve been able to pull him out of it. But today I wasn’t home and he wasn’t at work so we can only assume he only had myoclonic jerks.

Ryan is such a trooper. He continues to count down to the surgery. He continues to keep to a strict food regimen and to workout (albeit adapted at times due to the epilepsy) so that he can be as healthy as possible to make it through the brain surgery and recover quickly.

As much as I am nervous about this surgery and scared to leave him alone for even a short amount of time…I am in awe of Ryan’s stamina, focus, and strength. I know he is nervous about this surgery as well but our perspectives are different and our motivation to keep counting down to the surgery is different as well.

I think we are both learning to take one day at a time. As of today, we have 33 days to go. Today, was just another day of Epilepsy.

Counting Down to Brain Surgery

I started this site over a year ago with the intent to raise Epilepsy awareness. While I do mean awareness for those who have been diagnosed with Epilepsy, I also mean awareness for those of us living with those who have Epilepsy.

I sadly wrote one entry and then disappeared. The Epilepsy got worse, the treatments became more and more ineffective, and time took control of our lives. Since my husband, Ryan, has been on every possible medication and no medication or cocktail of medications are effective, and no diet is fully effective, we are now counting down to surgery.

We have 73 days to go until go time. The surgery is inevitable and looking like the only option. I have been looking at this as his countdown is my countdown. However, as we get closer to the surgery, I’ve decided not to let time defeat me. It’s time to write more on the blog website, post more on Facebook, and do more to make sure we are financially ready for whatever may happen by way of the fundraising page.

Ryan has been counting down to the surgery and now I will too. I may be on my phone at 3 am to do it but it will get done. Hey, if Ryan can wake up that early to make sure he is physically and mentally ready in time for the surgery, so can I!

Caregiver…One More Title?

I have a lot of titles in my life.  I am a wife, a mother, a daughter, a sister, and an attorney, and an employee.  Yet somehow, I have now added “caregiver” to my list of titles.  While I understand that I am a caregiver to our son, I really do not like thinking of myself as Ryan’s “Caregiver.”  Ryan is completely capable of performing his day to day activities.  He wakes up, he works out, he makes his breakfast, he goes to work, comes home, spends time with the family, and gets himself ready for bed.  The only part that involves me as what could be construed as a caregiver is that I drive him to and from work or whereever else he needs to go.  So, what is a caregiver really and why is it that I keep hearing this title in reference to Ryan and me?

Mirriam Webster Dictionary defines the word “caregiver” as “a person who provides direct care (as for children, elderly people, or the chronically ill)”  When I did a Google search for epilepsy caregiver definition, most of the results referred to “patients and caregivers” and had nothing to do with a definition of “caregiver.”

caregiverdef

Then I saw it.  “Caregiver Burden in Epilepsy: Determinants and Impact – NCBI – NIH” on April 8, 2014.  In this article, a caregiver “was defined as the family member who was primarily responsible for provided every-day care for the patient.”  So, now even though there is a definition out there, I still do not feel helped.  I am having trouble accepting that I am primarily responsible for providing every day care for Ryan.

Next I found that Edmonton Epilepsy Association published a pamphlet, which seemed to be more on point with my mental state and personal theory of what a caregiver should be.  In the pamphlet, the Edmonton Epilepsy Association describes that a caregiver “provides the link between the individual, health care professionals, and the community at large.” 

edmonton caregiver defNow, this is a definition with which I can live.  I do go to his doctors appointments with him.  I do talk to his doctors about his care and treatment and ask questions on his behalf.  I am reaching out to the community at large for financial and emotional support to both of us.  

As I continue to read, I find that it really is a great resource.  It does not make me feel like I am a nurse or aide to Ryan, but rather, that I can be both a wife and a caregiver to him at the same time and using the same resources.

For those like me, struggling to comprehend this new title of “caregiver” I would say after this research that it is not a new title but an enhanced titled.  We have been doing these things all along but the diagnosis of Epilepsy in our loved one has put a new focus on us.  With words of encouragement and the understanding that we are there to make sure the person is safe and to be a “link” to healthcare providers and the community, I am now more accepting of my title of “caregiver.”

Starting this Site

I have known Ryan since before he was diagnosed with Epilepsy. Yet it wasn’t until 4 years into our marriage when I truly saw and understood what effects Epilepsy has on a person both physically and mentally. It was also not until this time when I felt the impact Ryan’s epilepsy had on our toddler son and me. It is not an easy condition to talk about or explain. However I want to be able to share our experiences, research, accomplishments, and even set backs in hopes that others can learn more about Epilepsy and become more aware. Welcome to ROC Stop Seizures. Thank you for taking this Epilepsy Awareness Journey with me.

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