Change with the New Year

Jan.-Feb 2016 updates

Jan. 16, 2016

Been a long time since last updated. Had few good weeks here and there. Really have gone down hill. Struggling with my chronic protein malnutrition. I have been having more days needing a wheelchair to get around. I am very weak and mostly bedridden. I have a cold on top of everything and been under extra stress as well. My tpn (IV nutrition) has been making me a little sick and we had to make adjustments. I am currently not taking in enough nutrition to maintain. I am not able to absorb normally when I eat by mouth. This has been a long battle. I’ve been burning more calories than I’m able to take in. I continue to fight and try to be strong. My muscles are wasting and I am weak and very tired. I have been up and down this road time and time again. It is very painful and it has taken a lot out of me. I will continue to live for the good moments and focus on love and joy. And only time will tell what the days may hold. 

Jan. 22, 2016

There is no shame in being different. PICC line and all – it is important to feel good about yourself no matter the obstacles.

Jan. 31, 2016

When you can feel your muscles wasting and your entire body hurts with stiffness. Hello wheelchair! Malnutrition! Ughhhh! The nights are the worst.

Feb. 16, 2016

Well big changes in my treatment…I am having surgery this Wed (in 2 days) to have another port placed, so I can get rid of my PICC line. And after a lot of thought, we have decided to stop my TPN (IV nutrition) since my body started to become too sensitive to it even with all the adjustments. We have the TPN on hold for now and will see how I’m doing after one month, then 3 months out and we can start it back up if I get critical levels again. I have been off it for 2 weeks now. I actually feel more like myself and I am feeling hopeful but it is still a bit scary since my levels are still pretty low. But thankfully I will still be doing IV fluids 3x week which helps. I have been able to drink some liquids and soup and found a protein drink I am able to keep down without any reactions which has been a blessing since I am sensitive to soy and most nutrition drinks. I can eat some solids but it still makes me very sick since my stomach does not empty well enough. I still do not absorb most of what I eat. So not sure how long this diet will last, but for now I will just focus on one day at a time. I never thought I would be able to come off TPN, so I am feeling thankful for this break. And my liver levels have finally gone back to normal since stopping the TPN. So that is very good. I’m looking forward to having a port again. It will be nice having a few days off again without having to worry about caring for my line and will be nice to be able to shower easier again. It is the little things in life. Feeling thankful.

Feb. 24

I got my PICC line removed today. What a wonderful feeling. I had it in for 10 months. Used my new port today and it worked wonderfully. Today has been a really good day.

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