Me

This isn't going to be my favorite post and it makes me a little nervous for people to read. When you expose the most raw part of yourself, you can't help but feel a little vulnerable. I've debated posting this to the public and who knows why I did. Maybe because those who know about it seem hesitant to ask me personally or maybe because it might help someone in someway or maybe it's simply because I find writing down my feelings therapeutic. After the past month I've had, I'm in need of anything therapeutic.

About a year and a half ago I wrote this post that touched very lightly on my latest medical issues. I was so excited to announce at the end of that post that I had successfully gotten off all seizure medications. I'm sad to say that after a liberating year and a half, that's no longer the case.

In 2005, as an 18 year old senior in high school just a month before graduation, I was told I had adolescent onset epilepsy. Growing up I was always a healthy child with no problems, so to lay down one Sunday afternoon for a nap and then wake up in the ER was terrifying. I literally thought I had died until I saw my mom standing over me trying to explain that I'd had a grand mal seizure. I kept telling her over and over "I don't understand". When I finally understood what the words meant, I went into an uncontrollable panic attack. I couldn't understand why this was happening and the whole situation seemed like a cold hard punch in the face. I just kept wondering what I did wrong.

Hoping it was a fluke, my parents kept a close eye on me and watched as I had another in my sleep just two days later. Now that I knew for sure what waking up from a seizure felt like, I pieced a few things together and realized I'd been having them for months in my sleep before anybody witnessed one.  At this point the neurologist felt it necessary to start medication. The side effects from the medication is a horror story in itself. Some of the things I had to deal with were anxiety, panic attacks, paranoia, lethargy, confusion, nausea, feeling lightheaded, losing my balance, loss of appetite, loss of weight, insomnia, crying randomly with no control of my emotions, having trouble remembering words which occasionally makes me stumble when I speak, being in the middle of a sentence and completely forgetting what I'm talking about, memory loss to the point I couldn't remember my own childhood and short term memory became difficult to retain. As well as legally being unable to drive for 3 months after each seizure and being required to have my neurologist sign off on my ability/safety of driving and pass it on to the DMV every year. In general I felt broken and nothing like my old self. I felt like I had been forced to become a different person and I hated it. But the medicine stopped the seizures immediately, so I dealt with it.

A few months later just after regaining my ability to drive; I forgot to take my medicine one night and the next morning had two grand mal seizures within a few hours of each other, one of which I stopped breathing. My dosage was upped and I now had to take it twice a day. The doctors did test after test (EEG, MRI, CAT Scan, sleep deprived tests and even a 24 hour EEG) some of them multiple times...nothing. The only common denominator between all my seizures was they only happened in my sleep. All they could tell me was to avoid the extremes, don't get too stressed, too tired, too hungry etc. Which all things considered isn't that bad but it does leave you wondering; Am I going to be on meds for the rest of my life? If so what kind of toll will it take on my body? Are the side effects always going to be this difficult? How can I get an education with no memory? What will happen when I'm pregnant? Will I be able to breastfeed? and so on and so on. Over a course of time it became easier to deal with the side effects and lingering questions. I accepted my new reality and began to move on. It went on this way for 3 years as I got used to the side effects and continued to be seizure free on medication. I felt like my old self, I was happy, living a good life and felt "normal". At the end of those 3 years I experienced a time of extreme stress. Shortly after, I was in a lot of physical pain, different than anything I'd ever felt and I couldn't help but sleep 12+ hours a day. I went back to the neurologist and was told I now had fibromyalgia. I didn't like that answer so I went to two more neurologists who told me the same thing before I accepted it. The third neurologist told me he'd like to put me on a med that would take care of both the seizures and the fibromyalgia. I decided that was better than just adding more meds and began the switch.

Switching was a nightmare, I was dealing with side effects of the new meds and withdrawals from the old meds at the same time. The whole process had to happen slowly over a couple months to avoid causing a seizure. The side effects of the new medication were even worse than the first. I only lasted a few months on it before I couldn't take it anymore, so I switched meds again and started the whole process over. This third medication didn't take care of the fibromyalgia and caused the anxiety to be so bad I had to add another medication to ease that. That ended up being a pretty good combination so I stayed on those meds for 2 years and found other ways to deal with the fibromyalgia. Again I felt like my old self, I was happy, living a good life and feeling "normal". I had a neurologist tell me that the surface of your brain changes every 5-7 years and since I had been seizure free for 5 years, there was a possibility I outgrew this and I could now try going off all the meds. I was so excited about this idea and started going off right away. That process took even longer because I had to get off each med individually and slowly.

At this point Tyler and I had been married about six months and he was coming along for the ride. I was convinced going off the meds would work...and it did. Assuming I had outgrown the seizures, I was excited to leave this in the past and see my future as medicine and seizure free.

When I got pregnant at the beginning of 2012 we took extra precautions and I some how made it through an extraordinarily difficult pregnancy and a taxing birth with no meds and no seizures. This is truly just short of a miracle. During pregnancy a grand mal seizure could easily be fatal to the baby and I'm not sure what would happen during labor and delivery other than a hopefully successful emergency c-section.

After Romney was born I was able to breastfeed which was a huge blessing and accomplishment. I was told by doctors that would never be possible because of the medication I'd have to be on. Six weeks after Romney's birth I woke up with a chewed tongue (one of the signs I recognized as a seizure) which hadn't happened in 7 years. A few days earlier I remember telling Tyler I felt funny. I couldn't explain how, I just felt...off. But that seizure was different. I didn't lose consciousness and I remember sitting straight up in bed for a few seconds feeling like I was in a daze and blinking like crazy. This happened two different times, that I know of. But because it was so different from all the other grand mal seizures, I put it out of my mind. In reality these were very similar to the small ones I was having for months before my family witnessed my first big seizure. When I told Tyler what had happened, I made sure he knew that if it was a seizure, under no circumstances was I going back on medication. I had been seizure free for 7 years and it didn't make sense that this could be happening again.

Exactly one week later I regained consciousness from a deep, dark blackness that words cannot explain. It truly feels like I just woke up from nothingness. For a split second I'm pretty sure I died and have no idea where I am. As I start to get a grip on reality and begin to understand my surroundings. I become completely disoriented and utterly confused. The person standing over me when I regain consciousness has to explain to me over and over again what just happened until I get a grip and understand what's going on.

The morning of December 16th the first thing I remember was Tyler leaning over me saying "Do you know what just happened?" I knew he was speaking to me but I had no idea what he was saying. He had to repeat himself multiple times before I realized what he was saying and answered "No". He told me "You just had a seizure". That only confused me more but after I had a little time to process it, I finally understood what the words meant and began sobbing. That's when the full blown panic begins. I have now realized that I just lost all control of my body and slipped into complete darkness. I've never felt more helpless. After I stop crying and let someone console me enough that I somewhat relax, I begin to feel the fatigue take over. All I want to do is sleep while at the same time wanting nothing more than to stay awake. I know sleep is the only thing that brings the seizures, so I begin the battle but sleep always wins.

The first seizure took place at 3am. I quickly fell back to sleep and the next thing I knew, I was once more waking up from the darkness. Tyler had to start the whole process over again. Once I understood that it was 6am of that same morning, I really lost it.

I don't know if this whole ordeal was more difficult for me or Tyler. From what I understand and what has been described to me about my seizures it's terrifying to watch (I'll spare you the details). I've never seen one and pray I never do. It's something you just can't unsee. I'm sure Tyler felt just as helpless as I did. So when I finally calmed down, he sweetly looked at me and carefully said, "I think you need to go back on your medicine". I knew at this point there was no other option, so I answered with a quiet and simple "ok".

Tyler called around trying to find a doctor early on a Sunday morning that could prescribe the last medicine I had been on. He was finally able to talk to a doctor who sent in the prescription and told Tyler that under no circumstances was I to breastfeed. That was like pouring salt in the wound. I had worked so hard to accomplish this and it was now another thing about my body I couldn't control. The medicine coursing through my veins keeping me conscious, was poison to my baby. I felt like the hard work was all for nothing, like I was a failure and that all of this was my fault. So began the self inflicted guilt trip.

My poor baby girl had the hardest time adjusting to formula. We tried one after the other but her tummy hurt so bad and she continued to be backed up unless she got a little help. Again enters the guilt trip. The one thing I knew could make her feel better was the one thing I couldn't giver her. When the seizures happened before it had the biggest affect on me. But now it was directly affecting my little family in multiple ways. I think that hurts more than anything. Later I found out that in my disoriented state after one of my seizures I asked Tyler if he still loved me even though I was broken. Hearing him tell me that broke my heart. Of course I knew he loved me unconditionally, but for a brief moment part of me really did feel that way. I don't think anyone could help but feel that way. A couple days later I told him I felt like I was in a nightmare. He answered "we are". That's when I realized just how much this hurt him too. It must have been one of the scariest, if not the scariest experience of his life. I can't imagine how difficult it would be to helplessly watch the person you love go through that. But Tyler has been my rock and strength through all of this. I know everything will be ok. It's easier this time because I have him.

The first few days were the hardest but we quickly got our feet back under us. In all this mess we've been able to lean on each other (more me leaning on him) and push through. A few days before Christmas Tyler told me he just couldn't wait to give me something (we're terrible at keeping surprises from each other). Then he pulled out a jewelry box that had the most elegant necklace with a diamond hanging from it. It was the exact design that I mentioned to him (once maybe twice) that I'd like to have one day. He emphasized that this wasn't my Christmas present, it was because I've been through such a hard year and the necklace was to remind me how strong I am. It's the most amazing thing anyone has ever given me. Not because of the way it looks (although it is beautiful) but because of the meaning and purpose behind it. His thoughtful gesture hit me deep. It never occurred to me that I was strong. I don't feel strong, but I guess the times you need to be strong are the times you feel most weak.

I don't know when or if I'll ever be able to go off the medication, but the benefits of the meds outweigh the risks of a seizure. The last thing I want is to have a seizure during pregnancy and I never ever want my kids to see me like that. Although this is truly the hardest thing I've ever had to go through, in hindsight, it could be a lot worse. I try to remember how grateful I should be and how lucky I am to have medicine that works and a great support system full of people who love and care about me. I've learned a lot from my struggles and feel I'm a better person because of it. I'm not saying the difficulty of the situation has gone away. I still struggle from time to time. I feel ok until I think about it too much and realize how this has completely changed my life and I don't understand why. I occasionally still wonder what I did wrong. And sometimes I tell Tyler I don't know if I can do this anymore. But nothing worthwhile ever comes easy and I think I have lived and will live a full and beautiful life because of that.

I really don't mind talking about it, but I rarely if ever volunteer the information. If someone asks directly I'll talk about it, but if someone just simply asks how I'm doing 99% of the time I'll say "Good!" But the purpose of this post was not to have a pity party and I hope it doesn't come off that way. This is really just a reflection of things I have been through and a way to get it off my chest so I can move forward.