When will this get easier? (scoliosis)

Ugh……I am trying to figure out what to write about first. The last few days have been pretty rough. I am also suffering cabin fever big time being stuck in my bedroom 22 of the 24 hours in a day. Luckily, the Olympics are on and that has kept me busy between nurses checking in and physical therapy.  I am not going to lie, I have yelled at the T.V multiple times especially while watching the men’s gymnastics team and Serena and Venus losing, but how happy were all of you that Phelps beat Le Clos? That was awesome.

On Sunday, I woke up feeling a little off. I felt  nauseous and a little dizzy. As the day went on, I was having a lot of pain in my stomach. Originally we thought it may just be  that I needed to ummm, you know, have a bowel movement. However, it continued to hurt worse as the day went on. My friend, Shanna, came over with her twin girls. She loaded all the kids in her van, minus Nicky, and took them to the movies and the park.  She took some really cute pictures of all of them too. I started to feel pain in my ribs on both sides and by 8 pm, I was in such extreme pain that it gave me flashbacks to my horrible hospital stay. My entire spine, my stomach, my ribs, legs, basically everything hurt a 9 out of 10. I haven’t had that much pain in a while. I was moaning, crying and laying in bed hugging my body pillow. After Neil got all of the kids to bed, which takes close to 2 hours once all is said and done, I asked if he could give me a shower thinking it may relax me a little bit. While taking off my shirt, we noticed that my fentanyl patch, my main form of pain medicine, was not on my chest. So, all day the fentanyl in my body wore off and I was without any pain medicine besides my small dose of oxycodone. The pain was so horrendous that I was shaking. After my shower, Neil immediately put a new patch on and put a tegaderm over it to keep it in place better. My husband is so resourceful! Unfortunately I didn’t feel any relief until around 3 am, but at least we know the cause for the pain.

The next morning, our other friend Adair came over to set up the crock pot for dinner that night. Every morning for the last week, I have felt pretty nauseous, but I wanted to come downstairs to greet her and chat for a little bit. I started to have hot flashes and became really sick to my stomach. As Neil walked her out and closed the door, I began to scream to Neil that I am going to throw up. As I made my way with my cane up the stairs and used my walker to my room, just in time, Neil runs in with a popcorn bowl and I began to barf. Actually, I just dry heaved for 15 minutes, but either way, it sucked ASS. I was so wound up I began to cry and shake. My nurse came in an hour later and called my doctor. I am supposed to take my Zofran for nausea 3 times a day, but I have been only using them when I begin to feel sick because our insurance company will only cover 9 pills a month!!!!!!! I should be going through 3 a day!!!! If I would like more pills, we have to pay $5 per pill out of pocket! I love it. They will give me 200 oxycodone for $10 with the rest insured, but Zofran, pffff, I get 9. What a joke.

Tuesday was another rough day. I had physical therapy in the morning and my therapist decided since I am not able to get out of the house to walk longer distances because Neil needs to stay with the kids, we would work on that today. I was able to get around the small block with my walker and his help and then fatigue and pain set in. I am supposed to somehow do this 3 times a day. Neil has needed to run errands for a few days now and today he really needed to get them done. He is not really supposed to leave me alone or with the kids but I told him if he can be quick, that we should be ok. Neil really didn’t want to leave me, but I guess you could say I forced him to go get it all done. He took Will with him and was going to take Nicky, however, Nicky’s been having some diarrhea and  his 4 molars coming in. I told him against my better judgement that the girls could handle it and take care of Nicky upstairs while I oversee their babysitting abilities. Of course, Nicky ends up having an explosive diarrhea. I can’t catch a break. I had Emma get a large towel to spread out over the bed next to where I lay. She was also in charge of wipes and A&D cream while Laura was in charge of getting the diaper, getting Nicky up on the bed and dealing with his poo stained clothes. Emma entertained him by singing while I had Laura hold his legs up so I could wipe him down without bending over or lifting him. Laura got his diaper on and I wadded up the towel and threw it in the bathroom. Throughout this whole ordeal, Nicky was yelling “No!”in his cute voice. After that, I spent 2 hours listening to the girls fighting over the walkie talkie while I read books to Nicky in bed. Neil is like a hamster on a wheel. He literally doesn’t sit down until 11:30 at night. I feel horrible about how hard it has been on him and the kids. When he isn’t taking care of me or the kids, he is cleaning the entire house. Anyone with multiple kids know even after cleaning, the house goes back to being a mess almost instantly no matter how organized you make it. I wish I could help out to keep some of the stress off him right now, however, I am already having a hard time dealing with myself.

The glue is starting  to fall off my incision from my bowel resection. Of course I immediately hobbled over to my bathroom mirror to check out my scar. That was a bad idea. It looks utterly disgusting. No, I am not overexagerating by any means. I no longer have a belly button. I repeat, I NO LONGER HAVE A BELLY BUTTON. Not only that, the rest of the scar isn’t even smooth and in most areas it looks like my skin is bunched up. I wish they hadn’t used glue but I can’t do anything about it now.  I cried so hard that Emma came running in to ask me what was wrong. I calmed down and explained that I was mourning the loss of my belly button that I had for 33 years. A little puzzled, she asked me to lift my shirt. After examining the scar with a dirty look on her face, she leaned in closer and said, “Well who said people really need a belly button anyways, Mom? You still have a little ball of skin where it should be, so that’s good, right Mom?” Yes that’s correct. I have a tiny ball of skin that I think used to be the inside of my belly button. Emma is wise beyond her years. I wish I could feel that way. Unfortunately, I can’t help how I feel at this moment in time. It’s a struggle every single day. Hopefully someday I will stop caring so much about the way I look. I don’t even want to get started on my weight. My whole life I was super thin. I used to wear leg warmers under my jeans in middle school so that my legs weren’t so skinny looking and wear multiple layers. I was made fun of incessantly from sixth grade through high school for being too thin. I was called anorexic and bulimic and so much more when nothing was farther from the truth. I used to drink ensures and eat candy bars minutes before bed trying any way to gain weight and whoever knows me sees how much food I can gobble up in one sitting. I have always had a high metabolism. So maybe that’s why when I look at myself in the mirror now, it’s very hard to do without crying. My thighs are the same width as my calves now. I lost 15 lbs and everyday it’s a struggle to gain it back. Fifteen pounds might not seem like much to most, but for someone like me who is thin as it is, 15 lbs is a ton. I drink 2-3 of Neil’s high protein, high calorie shakes a day with all my meals to pack it on. So far there hasn’t been any improvement. However, Neil reminds me every day this is temporary and eventually I will get there. Hopefully I get there sooner than later because I am ready to wear something other than pajamas.

I just woke up today with what feels like a pulled muscle on my upper back. Hopefully icing and laying down will help. The girls really want me to walk them in to school tomorrow morning. I am going to try my best to be there even if I look funny in my brace and my walker. I feel like I have already missed so much being in the hospital and rehab for so long and now I spend most of my day in bed upstairs. I’ve never missed a first day of school and since it’s really important to them, I am going to go as long as my pain is manageable.

On Friday I have my follow-up with the colorectal doctor to check on my bowel incision. I’m dreading the drive to Palo Alto in Friday traffic. I am only supposed to sit up for 30 minute increments. The drive at best is an hour there and an hour back and who knows how long I will be there during the appointment. We are also bringing the boys with us while the girls are at school. So it should be good times. Please keep me in your thoughts and prayers. My journey is far from over. (scoliosis)