November 12th: Weight was 106 and lung functions were 32%, 32%, and 35%. Continued another week of home IVs.
November 19th: Weight was 105 and lung functions were 34%, 34%, and 35%. Finished up my IV medications that I had left and de-accessed later that night and took my AMAZING IV free shower after 4 weeks of being accessed. Return to the doctors in a month. My weight is almost in the red zone. If I lose one more pound than I have to start doing the NG. I'm honestly not even really sure as to why my weight isn't going up. I've been eating A LOT, I'm not missing any of my enzymes, I'm not terribly sick as of right now...Buuut, I am thinking that I might have kidney stones again and those tend to make me lose quite a bit of weight. I need to get ahold of my urologist and get that resolved. I've had plenty of them..7 at one time before...so yeah, I'm very familiar with how they feel. I've also been having fevers on and off for awhile so I never really know how I'm gonna be feeling. There's a lot of days where I just honestly don't feel well at all and all I want to do is lay in bed. Actually, no joke, the night that I stopped my IV's, I started having that really dry, constant cough which has always been a sign of a flare-up...not even a couple hours after I de-accessed. Is it impossible to catch a break? It's okay. I could be a lot worse. I could be better, but I could be worse. I'm here. I'm alive.
We are still in the process of switching all of my stuff to U of M. I really have no idea how much longer it will take. Hopefully not too long. They are supposed to be calling me when everything is set up to make my first appointment.
Classes are going well. I'm passing all of them with good grades and the semester finishes in less than a month.
I'm hoping I can hold out this month without getting too sick. Last Christmas I was AWFUL and almost didn't make it without having to get hospitalized, but I made it a strong goal to wait until at least the day after to get admitted. I was confined to the couch for a week and half and had to have someone help me do absolutely anything..even something as small as walking to the other end of the room for my nebulizer machine, but I was surrounded by my family and everyone was managing to keep in good spirits despite it all. I did catch my mom a couple times break down when she didn't probably know that I knew, but how can a mom watch her child go through that without breaking down every time they look at them? I was in for New Year's. No one wants to spend their new year in the hospital, but we made the best of it and it wasn't too bad.
Pleeaaseee just let me make it through at least ONE month without needing IVs. That's what I want for Christmas. I have everything else I need or could ever want.
Thanksgiving is tomorrow.
I literally can not wait to be surrounded by family....and delicious food ;).
Last IV for the course
Waiting at the doctors
One of my amazing cousins that I am so grateful to have
Siblings and our friend who is considered family :)