insomnia strikes again

Being that for the last few weeks it seems like I can never sleep through the night, I don't know why I haven't been catching up more on my blogs. I guess that's also because I don't feel like much is going on in my life right now. I don't work. I wake up, I take my pills, do my morning therapy and IV medications, rest for a little, then some more meds in the afternoon, and then the same routine at bedtime with the therapy, IV meds and bed time pills. On monday, wednesday and fridays, when I feel well enough I go to Pulmonary Rehab for an hour and a half, in hopes of gaining some muscle to make my body as strong as it possibly can be for transplant. My good friend with CF Kristy is also in my Rehab class, and I have to seriously thank god that she is. We are the only young people in the program, everyone else pretty much is old and has lung problems due to smoking their entire lives, it's a blast let me tell you!
Next week it will be three months that I have actually been on the list. I know that's not long in comparison to some people and I have no right to complain but for some reason I just thought that my new lungs would be here by now. I have to say my spirits are in a much better place. For a while I was kind of freaked out, not knowing if this was really the right step for me. Now, I am 100% sure that transplant is the thing I need next. I am constantly on 6L of oxygen now at all times, and if I am actually doing something strenuous could use more. I've been putting on some weight, but I am still fitting in my abercrombie kids size 12 shorts haha. My friends, both new and old have all been pretty amazing about keeping in touch with me and trying to get together, which has really helped! I feel like I sometimes have a busier schedule now than when I worked full time! I do have to take it easy at times though because after a day or two of fun, sometimes I need two or three days in bed to recover fully.
I guess all in all, I've realized lately that life could have been easier, but I truly believe that it is the struggles that one person must overcome which makes them the person they are today.
I'm just REALLY looking forward to the day where I can take a deep breath in, not feel pain and start a long, happy future with my amazing boyfriend and give back to my family who has turned their worlds upside down during this whole transplant process!

feeling slightly better for the first time in 4 weeks!

I woke up feeling pretty crappy - but not AS horrible as I have been the past four weeks. My sister, brother-in-law and nephews came over and spent some time. I colored with my godson and just had a good time. They seriously melt my heart. Andrew will be three next month and Matt is 18 months. I was actually off of oxygen for a good two-three hours and took my pulse ox and it was 97 on room air! I could barely believe my eyes.
My sister was just saying yesterday that I am usually the type of person who doesn't gradually get better but that I sometimes just wake up one day and am a completely different person. If that's the case, I can't wait to see what tomorrow brings.
My video blog up there is just a brief little statement of how I feel and how much I am loving blogging. My family, boyfriend and friends have been amazing. My parents, sisters and boyfriend in particular have been in and out of the hospital with me, they have sat with me and just listened to me cry and vent all of my frustrations. A few of my friends have stopped by and spent time with me now that I'm home and much more accessible than Manhattan. Last but not least, I have learned and been inspired by all of the CF'ers whose blogs I'm following. CF is definitely a scary disease. Even scarier since they stress cross-contamination and pretty much alienate you from bonding with the only other people who are going through the exact same thing. The internet has changed that. It's amazing to see everyone be so brutally honest and divulge some pretty serious, deep stuff but at the same time it's refreshing because sometime's I read something and I have that moment where I say "Oh my god, this person knows to a T what I am going through". That in and of itself is an amazing gift. I've also realized how damn STRONG we CF'ers are!