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.
