It takes a lot to look this good
it takes a lot for you to see cuz
i didn’t wake up like this
It took a lot to look this good
Between the medicines and the feeding tubes and the VNS and a central line
I’m pretty much a robot and each of those things takes time.
Every few days I make a few days worth of feed. The process of making feed takes a little while. My feed which I’m totally grateful for is rather smelly sometimes and looks super green and strange!
My feed is made of kale, quinoa, hemp, grapes and olive oil.
Yes that’s what I’m eating 12-18 hours a day!!
I have to blend my feed in a blender with water then I have to drain it and then drain it again and again about 6-13 drains back and forth to make sure it doesn’t clog my tube.
So I put the feed in my feed bag and the
rest in jars and put them in the refrigerator.
Once a week I go to the infusion/cancer center and get my dressing for my Hickman changed my Dressing is basically the tape type thing that covers my Hickman which is my central line basically a long term IV that is located on my chest. My dressing keeps germs from getting on the line. Because my Hickman goes into my heart. If I get germs into or on my line I could be sending germs directly into my heart! And if you didn’t know that’s not a good thing.
I take medicines daily. Some orally, some by feeding tubes both my G (stomach feeding tube) and my J (small intestines feeding tube.) have meds are used for different tubes a few times a day.
The supplies I use daily can be overwhelming.
And that’s just the normal daily stuff. Not including the things I need for emergencies and for the weekly things like my feeding tube cleaning things, my Hickman dressing changes.
Part of me is really use to all I do. I take IV Benadryl every two to four hours. Which involves me drawing the IV Benadryl into a syringe, then attach the syringe to my hickman then push it detach it, then attach a saline flush, push the flush in then detach it and clamp my Hickman and attach my curoes cap to the end of my Hickman which keeps it sterile and then done..
I eat orally everyday. I can have problems with not being able to keep my sugar up from feeds alone. and I’m always trying to use my stomach so it doesn’t become more paralyzed then it is now.
I can’t eat or drink just anything. I have over 200 food allergies but I’ve been able to find out what I can have daily. Which also has helped so much. I’ve learned how much of each thing I can have.
I have surprisingly weird foods I’m not allergic too.
Milk is a big allergy for most people. For me I can have milk. I want to point out that each of these foods are brand specific. Even the water. The ice cream is extremely brand specific! Like down to how long it’s been sitting somewhere. It’s normally blue bell natural vanilla bean that I can have.
I’m pretty much always thirsty! I can drink water, some different weird types of “soda/coke/pop/carbonated drinks” whatever you call it
I have to flush my feeding tube every few hours to make sure the tube doesn’t get clogged it takes 3-5 minutes each time to flush if I flush to fast sometimes it will hurt.
When I plan my week or day out I have to make sure I’m not doing to much in one day or doing to much in days that are back to back. Like going to the store and then going to church then going to do something with my friends or family and then doing something else. The next day if I did all that in one day I’d need to be calm relax and not do anything that next day or two days. So being careful is something I’m doing all the time.
Whenever I cook or bake which both of those things is something I love to do! I have to make sure everything doesn’t come in contacted with something I’m allergic too.
There are so many things to physically do to keep my body alive.
I’ve gotten use to my life but at the same time I’m overwhelmed by it sometimes.
So yea I might have a backpack with me all the time but I’m always have scissors, band-aids and tweezers when you need it!
My backpack might weigh 12-21 pounds at times and I might enjoy telling people I’ll hit them with my backpack if there mean but overall the sarcastic and funny things I get to say while being sick is awesome!
But overall it takes a lot. If I’m being honest some days when someone says I look good and they are glad I’m “not sick anymore” it hurts I know it’s weird but part of me wants to be like I’m still sick. My disease is killing me, but I’ve been able to stay slightly stable because I put in hours and hours and put more effort to stay this way. It takes a lot to look this good.
And as you can see from my beautiful looks the effort pays off!!! It takes a lot to look this good!!
It’s not just physically it’s mentally emotionally and financially… each of those helps me look this good..
Shayweasel is looking good