First off, I want to thank everyone who reached out for your loving words and support. I am blessed to have so many beautiful people in my life, you are all truly loving and compassionate people and I am there for you too. It’s comforting to know that there is such a support for me, my health and my well-being. I’m overwhelmed with the support that my job has given me, the encouragement to take care of myself. It’s true, you can’t take care of others until you take care of yourself first. And I needed to do that.
I’m home again today, which is not my ideal. I love my job and really miss it. But I have to say, it is stressful and I’m wondering how much of my seizure activity is sparked by stress. Though the last time it happened at work, it was going to be a great day, lots of productive work happening, what appeared to be low stress. Though I do know about pairing, obviously things could be paired with stressful situations. Either way, I need to find a medication that gets these things under control even in stressful situations, because guess what? Life is stressful sometimes. And I have chosen a profession that while it brings me great joy and satisfaction, gives me some sort of stressful moment just about every day.
Life as of now has been chronicled as this:
Crazy medication that makes me angry was stopped on Monday due to the fact that I had a seizure that day and it was obviously having very negative side effects. Went up on original medication to 175mg twice per day.
Tuesday was actually great. It was a bizarre feeling to experience the medication leaving my body – my energy slowly increased throughout the day and my ability to stay calm increased as well. It was like I could literally feel the medication wearing off moment by moment. I should have taken data on it (nerd alert). But unfortunate side effect of getting rid of the side effects, I slept horribly. Crazy medication was making me so tired that I slept so solid and was rested (sort of). Going off of that made me sleep unrestfully (not a word in the dictionary, apparently).
Wednesday… not so good. It all fell apart in the morning. Another day like that original one where I was having seizures, pretty much constantly. I couldn’t believe it, it was so strange. It’s a real trip to lose control of your mind. I can’t even describe how it feels. I was just sad and upset. I was frustrated with going into work, leaving in the morning, leaving other staff to deal with my abrupt absence. I called my doctor and they recommended getting my blood drawn and going up to 200mg twice per day. I had seizures all day. My mom came to rescue me and drove me around to the lab to get blood work to the pharmacy to get more meds and just to be with me. I didn’t want to be alone. That’s what moms are for. I love her. I have extremely supportive parents. Dad called and kept checking in, mom stayed while I laid on the couch and watched TV. Brandon came home and helped me sleep by rubbing my back for an hour until I was out. I had a great night’s sleep.
Thursday, I stayed home (called in Wednesday night due to the crazy day I was having on Wednesday). The medication seemed to be working. I had a raging headache most of the day, either due to meds, seizures or forgetting that chai had caffeine and accidentally having a cup after being caffeine free for a day. I saw my doctor and we came up with a plan. He told me that it takes approximately 5 doses of this medication to be fully active, so by Saturday morning I should know how I’m doing. I was continuing to debate about going to work on Friday, not knowing how this medication would effect me fully until Saturday.
Friday, I made the tough call at 7:00 to stay home one more day. There is this incredible feeling of guilt when I’m not at work and not feeling like I’m on my death bed. I love being there, miss it and feel guilty that I’m at home with my pets. But again, I need to bring it back to the fact that I am taking control of myself and taking care of myself. My doctor told me not to drive for a few days due to the higher dose of this medication just to see how it would effect me. So the option of driving in then coming home is out, plus that makes it more stressful for everyone else to have to change things mid-day. See, going back to how stressed out I make other people in efforts to heal. I need to not do that. I need to heal.
But I am scared. Scared of not healing. What if this is forever? I know that it won’t be, this is only the second week that this is effecting me, but it feels like a lifetime. Fear is not something I handle well. Insecurity is not something I handle well. I cry. And I hate crying (almost as much as I hate vomiting… and that says something). I’ve become obsessed (again) with Lost and I keep thinking about that story that Jack tells Kate on their first day at the beach, how he was performing surgery on a woman and it went wrong and he became afraid. He let the fear consume him for 5 full seconds, but that was it. He took control back. I need to do that. Thanks obsessive television shows for helping me cope.
So now, hopefully this blog can be a way to share my positive outlook on life, as it was meant to be, with cooking, creating and living sustainably. Let’s try to get back to that, shall we?
(By the way, I have two amazing beers in the fermenters right now – Scotch Ale with Rye #3 and my Belgian Triple in honor of our Trip to Belgium)
Adventures in Self Sufficiency 
Stef! Don’t ever feel guilty about taking care of yourself! There is nothing about your job that is not completely, wholly, stressful. Why do you think I left and didn’t take the job they offered me! Avo lost all his hair over it! You are so selfless that it is hard to see that TBS can and will be fine while you take care of yourself. Even if, in the long run, you have to leave to make sure you are ok, they will be fine. They miss you and love you so much but you should always come first in your priorities! This job has a way of sucking you in and taking you over, and you are like me where you give yourself completely to helping other people. But you can’t help anyone if you aren’t healthy!! It is so hard to separate from that place and those people, but sometimes that’s what you need to do. I did it and it hurt. Today I’m leaving my other job and it hurts just as much. But what makes it better is knowing that there are amazing staff and families that work hard to make sure things keep on going. We love you and all anyone at TBS wants is for you to be better. So don’t feel bad!! Take care of you! And watch Lost it’s very cathartic.
I will see you soon!
JoJo
Thanks JoJo, I’m nowhere near the point of even considering leaving, that’s not even on my radar (I will be there until the day I die… seriously). It’s more that I want to be there so badly! There is an amazing team there who is handling it all, it’s nice to know that I’m not something like a cornerstone… If I’m not there, the place doesn’t fall apart. That at once sounds arrogant and comforting. But I do feel good about taking care of myself, there’s just always that little piece that tugs at me (how many emails in my inbox! I need to schedule that triennial! attendance!!!). Thanks for your kindness though. I’m SO SO SO happy to get you back for a bit with research! Hopefully that all pans out. I’ve got one guy in my room that I think would fit perfect 😉
I’m doing good so far – no seizures as of yet and the meds aren’t making me tired. Let’s hope this pans out for the rest of the day, the weekend and the week. The real test will come Monday morning when I see if doing the schedule sends me seizing 🙂 (kidding, kidding… kind of)
I know you would never leave! And of course you are a cornerstone but it helps to know that you can take as much time as you need and tbs will still be there! I’m excited to come back and see you and everyone! Get better and don’t cry too much at lost. I’m pretty bad at that!