My New Life

It's 3 AM.  Im currently still awake and I just got done repositioning Jack for probably the 7th time tonight.  Yes, I have all of my health "stuff" but right now, obviously my main concern is Jack.  I mean, as much pain as I watch him in, I have sat here and thought tonight, am I wrong to be so sad for him as this is nothing compared to what so many other kids face daily like cancer, or quadriplegia?  Yes, he is in a ton of pain, but his can be fixed and I can comfort him.  There are so many other parents who can't "fix" their children.  It just makes me sad.   Then I go on to think: ok, I'm now off of work until he is able to have surgery so I can take care of him, because of obviously nights like this.  And, all during the day the same thing happens.  How the heck am I going to afford all of anything?  This poor kid, he feels so bad for needing help, Everytime he asks me for help, he apologizes...

It's been a while since I posted anything.  Not much had really been happening, until I started noticing some trends, and not with my throat.  And this is where all of you who get grossed out by medical stuff may want to dip out...there's your warning.... Over the past year or so I guess I've noticed occasional blood in the toilet when I would have a bowel movement with some clotting.  I never really thought anything of it because it was so sporadic.  Well lately it started to get to be more.  And lately my bowel movements have changed.  To being one of three ways.  Terribly constipated, watery diarrhea or like a super loose cow pie.  I told ya if you don't like medical stuff you should have left 🤷‍♀️.  Well, a long with that, I have been feeling nothing but very very sick.  Like I can't eat a dang thing besides crackers and occasionally a PLAIN dinner roll.  I mean not even just peanut butter on it, without doubling ov...

When you were a kid, were you ever sick the night before you were supposed to do something really fun the next day?  Like go to a friend's house for a sleep over, or go on a field trip or something?  So, when you woke up, and all throughout they day you kept telling yourself you were better, even though maybe you weren't, just to make yourself think you were?  I remember one time I did.  Then, I went to that friends house and, in a short amount of time after being there, I threw up.   Well, I think I'm in the same predicament.  I wanted to be able to so badly just work one shift at Baga.  The job that is my dream job.  The job that has been my absolute most favorite in my life.  The job I have felt I have done my best creative work at.  Just one two hour shift.  And I couldn't.  I wanted so badly to see all my Tempesta relatives I only get to see two times a year, and I already missed the first time due to being sick....

I feel like I have started all over again with a trach.  I'm right where it all started.  Way too much mucus, not able to blow my nose when I cry when I'm alone, short of breath just walking from one room to another that I have to rest, and worst of all as of right now not working.  I worked so dam hard to get to a point where I could work.  I haven't worked now for what going on 3 weeks?  I couldn't save money because face it, I am on disability and I'm very grateful, but that doesn't give me tons to save.  Bills are due, stuff getting taken out of an account that I'm not putting money into.  But all that I could honestly care less about.  What I honestly worry about is being a good mom.  I know I can't be the best mom when I can't do much because I get too worn out.  And it makes me so dang mad.  So yes, people can criticize how I'm not being a good mom because I'm not doing "enough" with my kids right now.  But, I honestly w...

Well June 7th will be here before I know it!  With being sick twice recently, I must admit I'm quite nervous.  So in case people didn't see what is going to happen, here's the plan! June 7th, I will have surgery to get the first type of trach put in that I had.  It's called a "Shiley".  That type of trach just goes in the hole in my neck and down; whereas the one I have now is like a "t" and acts as a stent to hold open the area of my trachea that keeps growing shut.  Dr. Gray is willing to try this now that I have been off the steroids for around two months with no side effects!  Yay!  Although, she did tell me she's hopeful this will work, she does have concerns it won't because the last time she changed this trach out, the tissue did grow right up to the tube.   So, I will see her one week after surgery ( the tissue would previously have grown shut by then ).  And, she already has a surgery spot scheduled for two weeks out...

January to now almost April.  Last time I posted I said my new endocrinologist wanted to do further testing.  Well....we did it.  It was a stimulation lab test where I went into the infusion clinic and they gave me a medicine in my IV that is supposed to activate your own body's cortisol, to see if it's working.  According to the labs it is.  The endo wanted me to go off the steroids again without doing a taper.  I then had an appointment with the pharmacy team at the U of M (I have these every couple of months) and they couldn't believe a Dr. wouldn't taper off of steroids.  It wasn't long before I got a message from the pharmacist that she immediately called the endo, and I was to do a taper.  I am now off of them, so we will see!  Hopefully I can be off them for good! A couple months ago I also ended up testing positive for Covid 🤦🏻‍♀️.  So, my ENT at the U who deals with my trach wanted to see me after to see how my trach looked....