A message from Christine

Hello everyone! Sorry for the blog silence the past couple of days. Christine is at our grandparents house recovering, and do very well. She has less pain than before. Still a long ways to go, and is having difficulty breathing that needs to be addressed in upcoming doctors appointments. She wanted to write to you all herself, so tonight's post is from her.

From Christine: 

Sorry for the delay. It is really hard to type for long periods of time on the computer because my fingernails are now officially coming off from the cuticle down. But anyway, here it is after a delay!

This is what I feel like happened to me. I woke up one day and did my normal routine - ran with Neo, lifted weights, took a shower, hung out with Caroline, and went to work. At work I realized hmm my eyes are itchy. Hmm they are worse. Then I went home, took a shower, had dinner with Caroline and David and then realized something was really wrong. I had never experienced so much pain and itching as I did for that night and then the next four nights to follow. My life went from totally normal to not breathing and riding in the ambulance, getting an epi, going to an observation unit, going to a joined room, then going to a single after hearing that your chances of surviving this rare syndrome are scary small. Then from the drugs or the sheer pain I was in I experienced this weird thing. Like I was there but I was not there really. It was horrifying. I was describing it to the nurses later and they said stuff like that happens a lot to patients who are really, really sick. Anyway, it was like I could hear what was going on and I could hear my sister and my mom and I knew I was really sick because people were crying but I just couldn't do anything to help. This probably does not make any sense. But anyway, it was a horrifying experience.

I also want to take a second to thank every single person who has thought about me, visited me, donated to my website, prayed for me, sent me something, anything at all. Every single one of you helped me get through this. Every single one of you. I would never have made it without you.  I know it. It was a joke on the floor that my room was the party room, we had to steal chairs because we had so many people visiting me. I cannot even being to tell you in words in the blog how much that meant to me. I just can’t. But you have to know I am so thankful from the bottom of my heart. From mom who spent nearly EVERY single night with me and changed her whole life to care for me, to my sister who let her PhD slide to take care of me nearly DAILY, to my dad who took the time and changed his life to take care of me and spend the night several times, to Tom who is taking care of my dog for me without complaining at all and who drove down to visit me tons, and then Tommy shared his new wife my mom with me since she needed to be with me nightly. My grandfather visited almost daily, my grandmother too. My aunt who brought me treats and company, my sister Kimmy who did the same. Then there is all the long distance family like Jackie and Andy, and Grammy Jane, and Grandpa George, Chip and Sabrina. Then there were all my friends like Dounia, and Janie, but the ones constantly visiting were Rebecca, Rachel, Molly, and Laura who were constantly visiting me. Then there are all of my work colleagues, and their massive gift to me. I still am in shock and awe in gratitude to my coworkers at Mass Eye and Ear. My boss, who visited me constantly checking in on me, I am so lucky to have a work family like I do! Like really, whose boss would visit them constantly? Mine! She is amazing. I used to joke about how I loved my work family before I got sick but it is no joke to me anymore, everyone I work with really is my family. And I cannot thank you enough again for everything you have done to help me get through this!

And the nurses! I don’t even know what to say – all of my nurses in White 11 were truly phenomenal. They helped me through some of the hardest parts of my life, and made me feel like everything would be OK. They took the place of Mom and Caroline when they couldn’t be there, treating me like I was a real sister to them. I got to know so many of them and they all helped me in so many ways. I want to give a special shout out to the ones I remember the most, the ones who had me over and over again and who saw me through the hardest of the hard times. Thank you from the bottom of my heart to Jena, Allie, Sam, Aileen, Bridget, Ashley, and Sharon. And I know there were other great nurses that aren’t listed there – I didn’t have a single nurse who wasn’t great. You guys helped save my life, and you deserve the biggest thank you. I miss you already.

Every single person like I said helped me get through this. If I missed listing you I really apologize. But everyone who helped me get through this I want you to know I am so grateful for your help. I am in awe in how much money we have raised to help me through this, like I am seriously blown away by what has happened. I cannot say THANK YOU enough. I am getting through this. I am covered in scars and I am working on walking and getting stronger and my breathing needs to get stronger. I am going through Hell but I am just moving on to greener pastures.  But I am recovering! And recovering way faster than they would have expected since I got home, which is amazing.

Since coming home I have started to heal like exponentially quicker. I feel like I am free. On my drive home I could not believe how green everything is! I went into the hospital in the dreary grey time of the year and then I came out and everything is so green! So that was a big change. I also was thrilled to get out but as soon as the sun hit me it felt like someone was throwing acid all over my skin. I was less than thrilled to learn this. Even in the car with the tinted windows this is a new thing I am dealing with. We just try to hide myself the best I can with clothing or a sheet. As for outside I have been using an umbrella which has been working pretty well.

I got my hair cut the other day and my hairdresser did my hair in an updo and made me feel so beautiful even though the steroids have made me feel like I am honestly a whale. Lara donated her time and her skills and a brush and spray to me. I was again speechless. Lara again, thank you a million times again my hair looks amazing still! Other than that I have just been hanging out writing thank you notes for the donations and relaxing. For all of you who know me, relaxing is not high on my list of things to do. I am really struggling with that. I hate that I have lost some of my independence and so that is probably the hardest part out of all of this. But hopefully with this progress I will be on my own sometime again soon! I am walking very well with the arm crutches I just get winded easily. I only use the wheel chair when I am going out for long strolls like going to the mall with my little brother. I went shopping with Sam and my dad the other day to return some of the dresses I got and I had the BEST day ever. Which is so funny since I hate shopping but for some reason I had a blast! Sam was so cute he was pushing me around waiting and helping me in the stores with outfits. Dad just hung out and went along for the ride. We had such a great time. I smiled the whole time. Then we went home and had dinner. This was one of the best outings I can remember having in a while. It was just so much fun getting out and seeing people and being in a place not the hospital, and I was with my dad and brother. It was great.

Today I had a doctor’s appointment, and tomorrow I have three in a row. So I will update then on the medical situation with my lungs and skin. We will see what they have to say. As of right now we are just waiting. I will keep posting to keep everyone updated. But I just wanted to make sure to say thank you in this first post because honestly I cannot say it enough to everyone. I wish I could hug all of you and say it personally because without all of you I don’t know where I would be.