Thank you for the encouragement. I am so incredibly disappointed that I had another seizure. And, I absolutely agree that my friends were just worried about me. It makes me sad though, that my friends are concerned, that they think it is a bad idea for me to join them in any situation - not that they're wrong, but it sucks. It hurts deeply. I know that wasn't the intention, but it was definitely a reality check. I don't want to just sit on couches, drink tea and visit. I don't want to be stuck in small groups. I don't always want to play it safe all the time, I want to live my life. It is very hard to have to hold back, to not participate - even if it's what's best for me.
"Liability" was my word, not my friend's, but that's how it made me feel. My friends care very deeply for me, and they addressed the issue out of pure concern, but it is pretty awful to have people think you can't do something - or at least deeply question your ability. Not everyone is going to be invited to everything, we're not all going to get participation medals. Life slapped me in the face on this one, though. It was a direct comparison to what I used to be able to do, and what now I can do no longer. It makes me feel weak. It makes me feel like I'm slipping away.
None of this was the intention of my buddies, but this cancer is a wicked, evil thing that knows no boundaries. I don't blame them for their concern, in fact I LOVE them for it, they only want what is best for me. Both sides are complicated. Ultimately, I don't have any business engaging in a pub crawl. I want to engage, though, to be included and have the option.
Either way, it certainly isn't the end of the world. Wires get crossed, intentions become misconstrued. This was a great lesson for me, to just allow some of the party to pass me by. They are great friends, and are always willing to meet up for more subtle, intimate get-togethers. I just need to focus on those, and put my expectations lower. I don't need to party, party, party. I have to do what's best for me, and I think that was what my girl friends were trying to do.
Feb 27, 2013
Feb 26, 2013
Another Seizure
Last night, around 11:00 pm, Danny gently woke me up. Apparently he noticed my body jerking, my arms stiff along my body. My fists were clenched and my mouth was foaming. I don't remember any of it, but after i woke I was completely confused and my head felt like it was exploding.
Danny is going to email Dr Liau to keep her informed. Hopefully she will also finally give us the results from January's MRI. The delay is because UW didn't send the MRI disk to LA until weeks after the scan. I have been constantly checking in with them, and UCLA. It has been frustrating, and I'm so grateful that I have a low stage tumor, a glioblastoma fighter would not be able to be so liberal with their time.
After discussing possible causes of the seizure, Dan and I came up with a myriad of reasons...
1. I'm stressed because I still have not gotten the results from my January MRI.
2. My body is still recovering from the brain surgery.
3. In just over a month I have flown to Germany and New York. Jet-lag is very hard on your body, especially when dealing with an illness.
4. Danny is working 12 hour days, 6 days a week. Our schedules are all messed up.
5. Girlfriends of mine are hosting an annual trail run, then they do a huge pub crawl. I had been planning on joining them, but they decided (after talking privately) that they didn't think I should come. I was only planning on going for the run, then visit for an hour or two, then my dad would come pick me up. I know I can't do it all, but I still want to see my friends. Hearing that my friends didn't think it was a good idea for me to join them was incredibly painful. The truth, in their minds, is that I am a liability. What people don't know, is that 90% of the time I pass on invites to get out and socialize for just that reason. By my girlfriends basically disinviting me, it conjured up deep rooted feelings of insecurity. I always worry that something might happen, that I might become too tired in a given situation, or that heaven forbid I have a seizure. I understand that my limitations cause me to not be the best candidate for social situations. I don't blame them though, for how they feel. That's the hardest part with your closest friends, you wish that they would want you around no matter what. That they would love to spend time with you, that they don't only want to be with you when it's convenient. My life isn't convenient. My life is unpredictable. And I never know how long my body will hold up. I should expect my friends to want me in all situations. I'm a lot of work. But it hurts. It just sucks.
I'm exhausted. It's time for a nap. My life continues to change - drastically in the past 24 hours. All I have is this present moment, and I have no idea what will become of me.
Ultimately, one could say they were right to disinvite me, judging by last night's events, but does that mean I'm supposed to just stay at home for the rest of my life? Or remain on couches. Play it safe and miss out on fun social situations? I don't have the answer, but I do know that I'm not interested in fighting to be with my friends if they don't have faith that I can conquer things. My dad offered to ride his bike as I jogged for the trail run, but it's not fun to try and include yourself when people are on the fence.
Danny is going to email Dr Liau to keep her informed. Hopefully she will also finally give us the results from January's MRI. The delay is because UW didn't send the MRI disk to LA until weeks after the scan. I have been constantly checking in with them, and UCLA. It has been frustrating, and I'm so grateful that I have a low stage tumor, a glioblastoma fighter would not be able to be so liberal with their time.
After discussing possible causes of the seizure, Dan and I came up with a myriad of reasons...
1. I'm stressed because I still have not gotten the results from my January MRI.
2. My body is still recovering from the brain surgery.
3. In just over a month I have flown to Germany and New York. Jet-lag is very hard on your body, especially when dealing with an illness.
4. Danny is working 12 hour days, 6 days a week. Our schedules are all messed up.
5. Girlfriends of mine are hosting an annual trail run, then they do a huge pub crawl. I had been planning on joining them, but they decided (after talking privately) that they didn't think I should come. I was only planning on going for the run, then visit for an hour or two, then my dad would come pick me up. I know I can't do it all, but I still want to see my friends. Hearing that my friends didn't think it was a good idea for me to join them was incredibly painful. The truth, in their minds, is that I am a liability. What people don't know, is that 90% of the time I pass on invites to get out and socialize for just that reason. By my girlfriends basically disinviting me, it conjured up deep rooted feelings of insecurity. I always worry that something might happen, that I might become too tired in a given situation, or that heaven forbid I have a seizure. I understand that my limitations cause me to not be the best candidate for social situations. I don't blame them though, for how they feel. That's the hardest part with your closest friends, you wish that they would want you around no matter what. That they would love to spend time with you, that they don't only want to be with you when it's convenient. My life isn't convenient. My life is unpredictable. And I never know how long my body will hold up. I should expect my friends to want me in all situations. I'm a lot of work. But it hurts. It just sucks.
I'm exhausted. It's time for a nap. My life continues to change - drastically in the past 24 hours. All I have is this present moment, and I have no idea what will become of me.
Ultimately, one could say they were right to disinvite me, judging by last night's events, but does that mean I'm supposed to just stay at home for the rest of my life? Or remain on couches. Play it safe and miss out on fun social situations? I don't have the answer, but I do know that I'm not interested in fighting to be with my friends if they don't have faith that I can conquer things. My dad offered to ride his bike as I jogged for the trail run, but it's not fun to try and include yourself when people are on the fence.
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