I napped most of yesterday, trying to get back on my feet. I thought that resting for a day and getting a good night's sleep would be enough. So, this morning Dan and I went out for our 6 mile run. Half a mile into it I started to get dizzy, and nauseous. My body is so off. I can't even explain it. If you remember, when I had my first seizure, the grand mal, I was driving alone on a highway, cruising at about 60 miles per hour, weaving along a ledge above the Wenatchee river west of Leavenworth. I had a weird sensation, a minute change in vision, like everything was slightly over exposed. I became nauseous, and dizzy, and although I had no way to know what was about to happen, I pulled over. As I put the car into park my body began convulsing, my eyes rolled up and the last thing I saw was the ceiling.
I have no idea how I knew to pull over. None of the things were so severe that I was scared, it was just an odd feeling, an indescribable sensation. From time to time I get these premonitions and they're scary. I never want to freak out, and it's important that I know how to keep myself safe. So far I have been able to avoid any other grand mal seizures, but they still have a hold on my life. I still have to be really careful. When my body alerts me, I take it very seriously.
I never want to have another seizure ever again, if that's possible. Flash back to this morning, Dan ran into Dukes at Greenlake to get me ice water. I chugged it (ice water is what it takes to immediately calm my over active brain - along with lorazepam), we sat for awhile, then walked home to rest.
I hate it that my body isn't as capable as others. I hate that I have limitations. I hate it that this makes me cry. I hate that my brain is working so hard, yet short circuits so easily. I hate it that I can't power through life with a coffee and tenacity. I feel so frustrated and sad. I'm lucky to be here. I'm so grateful to be alive. And I MEAN that. Deeply. But I'm also frustrated.
I probably won't be emailing or texting for a bit. I need to just gather my wits.
And mom and dad, please don't panic. I'm just venting. Seriously. And I need rest. I love you all.
And thank you Christel. You are amazing. And I am so grateful to you.
Feb 16, 2013
Feb 15, 2013
Home
I'm home, and exhausted. Yesterday, we had to check out at 1:00pm and our car to the airport was at 4:00pm. My body was exhausted, and I thought that taking a walk, drinking a fresh pressed green juice, then visiting at a Starbucks with Christel to pass time would be a great way to kill time.
Unfortunately mid conversation, I felt a massive wave of nausea and experienced vertigo. It was the feeling of an aura. I ripped off my scarf and ran for the door, needing cool fresh air. Christel immediately ran and got ice water which I chugged and placed a lorazepam under my tongue. I didn't know what to do. New York is amazing, but there's not a place on the entire island of Manhattan where you're alone, and it's quiet.
Christel and I slowly walked the half block back to the hotel where I laid down in the lobby of the hotel, put my noise canceling headphones on, and closed my eyes. Christel ran around getting things to help, she kept refilling my ice water (at least two liters), she grabbed some food, that I couldn't eat. I was just trying to limit the stimulation. My brain was frazzled, frying. We almost cancelled the flight and just stayed one more night, but I wanted to get home. I was going in and out of nausea and sickness, along with confusion, and I didn't want to push it, but I needed to get home and climb into my safe place, my cocoon.
Ultimately, Christel contacted Delta and when we arrived at JFK we had a wheelchair waiting. I closed my eyes and just tried to avoid all of the chaos of the airport. Once on the flight we hunkered in, covering me with blankets and christel's puffy jacket. There were a couple of touch and go moments, but I just popped another lorazepam, closed my eyes, and mentally sang a lullaby. I know it's cheesy, but the lullaby hopped into my head, and it calmed me down. It removed all the thoughts swirling in my mind, quieted my fears, and completely distracted me. It was exactly what I needed.
I have stress induced seizures. That's why quiet is so important. I always need a safe place to go, where it's dark, quiet and cool because I just never know when my mind will short circuit. If I catch it in time it won't turn into a seizure, but it's very important that listen to my body.
Next time I have to checkout at 1:00 pm (they wouldn't let us remain in our room), I will just pay for another half day. When traveling, I need to spend a lot of time in bed. I need to avoid stimulus, especially just before a long cross continental flight. I'm still learning my boundaries.
As for the shot, it was no big deal. I did not get sick. It was wonderful seeing Dr Germany again, and of course Dr NYC. It was kind of embarrassing because when I walked into the office, Dr NYC said, "The girls in the office found your blog (with a grin) thank you for all the kind words!" I immediately turned bright red. I never really remember what I write, I just put down my experiences and feelings.
So the piece of bad news that I am very sad to report is that the treatments in NYC have doubled due to our government imposing insane taxes. Because I went to Dr NYC last fall, I qualify as an existing client, however for those who met with him after January 1, 2013, the prices are dramatically increased. I'm so sorry to those who are watching my case, and deciding from my results. I don't understand why our government would cause the current cost of the shot ($4,200 Euro) to DOUBLE ($8,400 Euro) because of an imposed tax. Obviously the government doesn't find the shots to be dangerous or they would ban them. Instead, it implies that only the wealthy should get access to the best immunotherapy in the United States. It's disgusting, and frustrating. And it makes me feel so helpless. It makes me so disappointed in my country.
I am able to get my shots in the United States under "Compassionate Care." An attorney drafted the legal documents and that costed $500. Now, the documents, drafting, and legal right to undergo the shot therapy in the US is $5000. This is insane! Why does our government want us to die?
Ok. Time to rest. It has been a long week.
I love you all.
J
Unfortunately mid conversation, I felt a massive wave of nausea and experienced vertigo. It was the feeling of an aura. I ripped off my scarf and ran for the door, needing cool fresh air. Christel immediately ran and got ice water which I chugged and placed a lorazepam under my tongue. I didn't know what to do. New York is amazing, but there's not a place on the entire island of Manhattan where you're alone, and it's quiet.
Christel and I slowly walked the half block back to the hotel where I laid down in the lobby of the hotel, put my noise canceling headphones on, and closed my eyes. Christel ran around getting things to help, she kept refilling my ice water (at least two liters), she grabbed some food, that I couldn't eat. I was just trying to limit the stimulation. My brain was frazzled, frying. We almost cancelled the flight and just stayed one more night, but I wanted to get home. I was going in and out of nausea and sickness, along with confusion, and I didn't want to push it, but I needed to get home and climb into my safe place, my cocoon.
Ultimately, Christel contacted Delta and when we arrived at JFK we had a wheelchair waiting. I closed my eyes and just tried to avoid all of the chaos of the airport. Once on the flight we hunkered in, covering me with blankets and christel's puffy jacket. There were a couple of touch and go moments, but I just popped another lorazepam, closed my eyes, and mentally sang a lullaby. I know it's cheesy, but the lullaby hopped into my head, and it calmed me down. It removed all the thoughts swirling in my mind, quieted my fears, and completely distracted me. It was exactly what I needed.
I have stress induced seizures. That's why quiet is so important. I always need a safe place to go, where it's dark, quiet and cool because I just never know when my mind will short circuit. If I catch it in time it won't turn into a seizure, but it's very important that listen to my body.
Next time I have to checkout at 1:00 pm (they wouldn't let us remain in our room), I will just pay for another half day. When traveling, I need to spend a lot of time in bed. I need to avoid stimulus, especially just before a long cross continental flight. I'm still learning my boundaries.
As for the shot, it was no big deal. I did not get sick. It was wonderful seeing Dr Germany again, and of course Dr NYC. It was kind of embarrassing because when I walked into the office, Dr NYC said, "The girls in the office found your blog (with a grin) thank you for all the kind words!" I immediately turned bright red. I never really remember what I write, I just put down my experiences and feelings.
So the piece of bad news that I am very sad to report is that the treatments in NYC have doubled due to our government imposing insane taxes. Because I went to Dr NYC last fall, I qualify as an existing client, however for those who met with him after January 1, 2013, the prices are dramatically increased. I'm so sorry to those who are watching my case, and deciding from my results. I don't understand why our government would cause the current cost of the shot ($4,200 Euro) to DOUBLE ($8,400 Euro) because of an imposed tax. Obviously the government doesn't find the shots to be dangerous or they would ban them. Instead, it implies that only the wealthy should get access to the best immunotherapy in the United States. It's disgusting, and frustrating. And it makes me feel so helpless. It makes me so disappointed in my country.
I am able to get my shots in the United States under "Compassionate Care." An attorney drafted the legal documents and that costed $500. Now, the documents, drafting, and legal right to undergo the shot therapy in the US is $5000. This is insane! Why does our government want us to die?
Ok. Time to rest. It has been a long week.
I love you all.
J
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