Friday, February 15, 2013


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.


  1. Jess,
    So glad you are home & can rest. Dan will take good care of you! Just rest & breathe!!!
    Love you.

  2. Ditto to what was said above. Welcome home and Christel, thrilled that you were able to receive this set of shots. Sending Love! <3

  3. Thinking of you Jessica! So glad you are home safe and sound!! I know the expense of this all is so insane and impossible to comprehend when we are dealing with people's lives, but even with such obstacles and frustrations I love that you (and so many others) are taking care of YOU so that you know to rest, relax and try to let it go when your body is telling you it is all too much! We can only fight so many fights at one time and you have an army on your side supporting you through this all. When things don't make sense, when things become to much of a burden emotionally or physically, that is what all of us are here for--to carry you into and beyond this time when you need to let others advocate, support and care for you. Thank you for sharing so much so that people can truly help you in ways that really matter to you and make a difference to you and hopefully others now and in the future. You have all my love and support!



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