Sunday, April 27, 2014

Just Had Another Surgery, my 8th one.

Note: This is an older post sitting as a draft for a while that I just published. I was in better condition then as I was able to travel.

We arrived early in Manhattan after a Jet Blue red eye flight on Friday night, Sept. 9, 2011. Checked in to our Hyatt hotel at the theater district about 8 o'clock and walked to Central Park right away. It was nice to finally see the park which I just saw in pictures for a very long time.

After walking for more than a couple of hours (of course, I overdid again), we were ready to have lunch. Luckily, we hit a good Italian restaurant that served good pasta, a meal that our body needed at that time. We took a cab back to our hotel and took showers and to bed we crashed and woke up just in time to go see the off broadway show, Rent. It was fun. We were hungry after the show and walked around to find a place to eat. Went to Junior's but looking at their menu really didn't give us any craving for their food. A local guy showed us a place for a good pizza, it was actually really good!! After eating, we kept walking and just joined the crowd for the pre-celeb of the 9-11. We took lots of pictures. After 1 AM, we finally headed back to our hotel and we were both tired and slept through the night.

I was asleep when Kev left for the towers to see the 9-11 Anniversary celebration. He just took pictures because it was very crowded and it would be a fight to get closer. I was almost ready when he came back to the hotel. We took the subway, I really wanted to see Eataly, owned by the famous chef Mario Batali, best known as the world's biggest eatery. Everything was gourmet. We tried many kinds of food and it was all great. Then we headed to visit Kev's niece who lives in East Village. It was nice seeing her. On our way back, we stopped by at this famous pizza place called Motorino's but we didn't have enough time to sit and eat. We stopped by Union Square and I asked Kev if I can have a few minutes to buy a flare jeans, (a new trend of jeans at that time) and I did, but up until this day I never got to wear it.

We went to see broadway shows. I was guessing that Kev enjoyed Rent more than Billy Elliot but I did enjoy Billy Elliot, a lot. I was glad we went and saw it. Later, Kev said seeing it was like a tribute to his sister Eileen who was a dancer.

From Manhattan, we went to Flushing the day after to watch the US Open Men's Final's. All in three days!! We were tired, but we had a great time. I don't know what effect it would have on my already spastic torso and aching legs, but I think it was all worth it. We left our hotel that evening and headed for Long Island where my surgery would be done.

I was ready for the surgery, after all the fun we did. Tuesday, Sept. 13, was a day full of appointments. First was at the North Shore University Hospital for some test that I can't recall and then the EMG at 12Noon, next we headed to the Chiari Institute to meet with Dr. Bolognese. When we got there, we were informed that they had left us a message that the surgery schedule had moved up from 12N Wed. to 7AM. After meeting with the doctor around 4:30PM, we were told to go for an MRI and wait for the results and bring it with us to the hospital. We left the Imaging center at
7:30PM.

Kev asked me what I wanted for dinner and for some reason, we had a miscommunication and we ended up driving back to Chinatown to buy dinner. We arrived at The Variety House (where we were scheduled to stay until we leave on Sat.) late that night and Dennis, the VH supervisor came in later and talked to Kevin and I. We tried to get some rest and left at 5:30 in the morning. The hospital is like a five minute drive from where we were.

I was ready for the surgery, no second thoughts and no anxiousness unlike the past surgeries I had. Dr. B. met with Kev and I first thing in the morning and informed us that the surgery will not help my Thoracic spasticity at all. The surgery will cover only the cervical problems I was having. I didn't expect that it will cover more than the cervical.

Surgery went well except the horrifying pain I was in after they wheeled me into recovery. Because I cannot lay on the left side of my back and left side of my head due to C2 neuralgia which after surgery were all numb and excruciatingly painful. I was screaming at the recovery and no one was coming to my cries. I waited for two hours. At 8PM, Kevin came to see me after his excercise. I saw he was sweaty and there was air conditioning inside, first thing on my mind was he might get sick. It was nice of him to bring me some stuff I needed. He also went and bought me ice cream which my
doctor ordered in order for my throat to heal fast!! I know this guy loves me and I love him dearly. He stayed for a couple of hours. And everyday he would come in the morning and in the evening.

Kev got sick, must be from the air conditioning while he was sweaty. We both had to stay in bed for the rest of the time we were in Long Island until it was time to fly back.

I want to thank my partner for this trip. Without his help, this trip would probably not have happened. If it did, it would not have been fun at all and comfortable. Kevin planned it so everything went well and it was full of fun. And best of all I was able to spend time with him the whole time. I love him with all my heart! He is the best!



Friday, April 25, 2014

Keep Trying to be Courageous

Until when am I going to play courageous? At times I wanted to give up, I feel like 19 years of being sick is too long. But I can't give up.

I have to keep going.  I think about my son, even though he's older now, I live for him. In fact I want to be healthy so I can see him graduate, get married and hopefully have children. I wanted to be there for him. Although I haven't been able to do much for him, I'm sure he still needs me. Being able to provide him with moral support is very important. My son and I have a very strong bond. I live for him and our 14 year old dog. I can't wait for my son to graduate. One day after my son graduates, I hope to still be able to spend time with my long time love of my life. I sacrificed not being with him because I wanted to help my son go to school and finish.

It is very difficult to deal with everyday pain, it is 24/7 but I try not to dwell on the pain by finding things that are interesting for me. I get by somehow. One thing that make us happy in our home is good food!

I have to be honest that there are days where it's difficult to hide your pain and the one thing I hate most is to pretend that everything is alright. It's because I live with other people. Those days when I'm in so much pain I wish that I can just live in my room.