Last one out hit the lights

After patiently waiting (patient is probably a bit much, but I didn’t have a choice)… I finally got to go to the rehab facility!

I really am starting to get to know the inside of way too many ambulance transports. This is not the same vehicle that took me to the hospital, but they look strikingly similar- huh?

I hear that it is quite a “trick” to get someone into rehab when they are from another state. I hear insurance even offered to fly me back to KY… not sure how THAT would “save them money.” Considering it took them 3 days to approve it (so that cost insurance 3 more inpatient days). I’m not sure how the cost of healthcare was helped by that either…. ‘Tis a funny world we live in. Just so happy to be at rehab and get to work!

That is what I am here to do. I am here to work. I am here to get stronger and figure out walking without a hip joint thing. I am here so that I can continue to takes steps to kick HLH out of my life and my families’ life. At least to the best of my ability. This is what you can control, your attitude,  your devotion, your commitment to the process. The big picture is in God’s control. You- you’re in charge of letting God and letting go. And being patient- a quadricep was not built in a day. I need time to build muscle. Be patient Demara, be patient.   The orthopedic surgeon painted a realistic picture for me and what I would be like post surgery. I must admit, in some ways he was right and, for my case in particular, some ways that he was wrong. Does my leg feel unstable? Yes. If you want to know what if feels like- it feels like I am walking on a diving board. It has this unusual bounce to it and decreased stability. BUT it doesn’t have pain. The sensation is predictable and therefore I feel more stable. I am decently walking with my walker.  It is just a matter of rebuilding muscle that has been damaged by surgery and inactivity for months. Considering the context, I am happy with the outcome. And bouncing on that diving board – well “just keep swimming.”

So we celebrated me being out of the hospital that night. What a celebration it was! The kids were starving- hamburgers, pizza, ice cream and cupcakes that they had made. And Camden lost a tooth.

And then there is this little thing that I have been working on….

Pretty proud of that. I can mostly get up from a regular chair about 1/3 of the time, but that is building with my strength. The therapist feels that it is a realistic goal for me to be able to use crutches when I leave. That would be awesome, but just having the ability to move without pain is very motivating (I have surgical pain mind you, but the deep pain is gone with the joint).

Of course, I have been thrown a little bit of a curve ball. While the infection of my hip is improving, I did become colonized with VRE while in the hospital (this is a drug resistant type of bacteria). As a nurse,  I flipped out. Just what I wanted, another bacterial infection. Yay me. On top of it, a resistant to antibiotics one. And I got it because of my antibiotic use, surgery, immunocompromised state, medical equipment, “someone didn’t wash their hands” hospitalization- another hurdle for me to cross. On the bright side- I will never have to share a hospital room with anyone ever. I am not 100% sure what this will mean moving forward to transplant, but no one seems overtly concerned. I am “taking matters into my own hands” by washing my hands more, eating a very healthy diet and trying not to freak. As well as having faith in my team and God that this part will work out too (because it will).

This has been (and always has been) such a growing and learning opportunity. I feel my body changing and growing stronger, but I liken it to being an infant. My legs have to learn to work and walk almost from scratch (and this time they are not carry a 20# body. If this 160# body falls, watch out). And when this “infant” gets tired, she gets extremely grumpy. I am 100% sure that if I was an infant, they’d be diagnosing me with colic. And my husband, he is being amazing. Taking care of a very grumpy baby, three other kids and pretty much everything else. While I am complaining about this:

He’s sending me pictures of the home he is getting ready for me after transplant. Because I cannot just “go home” to any home anymore. The house has to be immaculate or it could kill me. That means cleaning under furniture, dusting and getting to every surface that could harbor a fungus, virus or bacteria (think about it, moving every piece of furniture to clean under, washing drapes, bathrooms- cleaning out the fridge- everything.

As it goes though, let’s remember I am in a “rehab facility,” aka a nursing home. I cannot get around without a walker or wheelchair and someone ALWAYS has to turn out the light for me. That drives me nuts!! I cannot turn out my own light and go to sleep. And if they leave the room and leave it on? Brother. It is so frustrating. Why in the world do the hospitals and rehab places do that? I cannot turn out my own light?! So, sometimes I just sit in the “dark” of my cell phone so that I don’t have to ask someone to turn out the lights when I am ready to go to bed. 

Look closely.  If you are patient enough, listening enough…. there is another way to a light switch that you can reach. And it was a light that they said didn’t turn on anymore. Keep reaching for the goal.