My New Life

I have been thinking a lot about what to write on here.  And, I've been trying to decide if I should even write anything at all or not.  But, oh well here it goes lol.  First, I'm going to give you an idea of what my typical day is like.  I'm not sure if people really truly know what I do on a daily basis, or if they think i'm just sitting around all day doing nothing.  So, here it goes.  At 6am my alarm goes off to do my morning nebs and tracheostomy cares.  I have 3 nebs I do in the morning.  The nebs take me about 20 minutes or so.  After my nebs I do my shaky vest, and this is 20 minutes.  Then I do my tracheostomy cares.  This I can get done pretty fast in about 15 minutes.  Then it is time for breakfast and my morning pills.  On Mondays, Wednesdays and Fridays I go to Pulmonary Rehab from 1030 to 1130.  On Tuesdays and Thursdays I go to the Wellness Center at the hospital to exercise.  My alarm goes o...

So, if you looked at my Facebook page yesterday, it was a terrible day for me.  I was down.  Wednesday I went to see my ENT because i had completely lost my voice, and my breathing was getting faster, my chest hurt and I honestly felt like shit again.  She used a scope and looked at the bottom of my trach and saw big time inflammation and terribly red right bronchial area.  So, it hadn't gotten completely to my lungs yet, but she said was the start of pneumonia.  She tried using a scope down my nose into my throat but I gagged too much.  She wanted to see if the stenosis has gotten worse and that is the reason for no voice.  So, I was started back on stronger antibiotics and steroids again.  Yesterday, I still felt horrible.  Slept most of the day and coughed and coughed.  I was pale as could be and completely run down.  Not only philysically did it take a toll on me, but also emotionally.  I felt like I couldn't be a good mom ...

Yesterday I saw the pulmonologist.  And he has added a diagnosis of bronchiectasis.  He also added 2 more nebs to my routine (that makes 5 nebs) some 4 times daily, some 3 times daily and some 2 times daily.  He also is ordering me a vest that I will wear 3 times a day that will shake me to get the secretions loose in my lungs.  So last night before going to sleep, I went to go stand up and of course my back pinches and locks up and I can't move my left leg.  Ugh.  Someday this all has to get better but today, I'm rotating ice and heat between my lower back and chest  (hurts from coughing so much) and resting.  Rest and drink water!!!! 

Well, to say I'm ready for a new year is an understatement.  I am so thankful to go into this year being able to breathe.  Although,  learning to live with a trach is NOT the easiest.  I can't talk quite yet, which is really hard.  Christmas day we had a scare.  I started coughing, a lot.  There was some bright red blood (maybe a little more than a little) that was coming out of my trach and I couldn't stop coughing and catch my breath.  Mom called 911 and thank goodness for the Cumberland Ambulance and first responders that came out.  I was greeted at the Cumberland ER with many people waiting to take care of me.  It was decided that with me having a trach and the bleeding I had to go back to sacred heart.  So, off I was on an ambulance again, the last thing I wanted on Christmas Day.  At sacred heart I was diagnosed with pneumonia.  So back on steroids and antibiotics I went.  But, the good news was there wasn't...

Ok, I'll admit it.  I'm scared shitless.  I know this is what NEEDS to be done if I have any chance at getting better.  And, honestly, Tuesday can't come fast enough.  I did something today I never ever should have done, and I knew it too.  I googled Tracheostomy and watched a video of the surgery being done.  I've seen a video of it several times in school, so I know what it is like but when it is me in the situation it is completely different.  I am only 37 years old and need to have an artificial airway.  I am gladly welcoming the new year 2020.  I am determined it will be MY year!! 

This used to be my favorite time of year.  Key word USED.  In case people didn't know, I HATE being like this.  I would LOVE to be able to go to work, I would LOVE to not have to wear a mask, and I would LOVE to be able to skate with my boys at open skate.  Instead I worry about my kids and family being embarrassed to be seen with me because I have the mask, I feel like a burden, I have to rely on family to help with everything.  I hear people talk when they see me.  I am made to feel dumb when I go get labs drawn, seriously adults being bullies is terrible.  I'm not trying to get ANY sympathy, I just need to vent and want people to know that just because some people "look" different doesn't mean they chose to be like this.  I'm 37 years old with two kids and have to think about disability.  I have always been what I consider to be a hard worker and this truly destroys any pride I had.  Not much is new with my health, not getting any wor...

Dr. Lim is my pulmonologist at Rochester.  I am going to try and explain this the best I can, but it will not be NEAR as good as he did, he did an excellent job and it all made so much sense.  So, not seeing me the very first time on August 11, just by reading the reports pneumonia started all of this, a VERY bad pneumonia.  I had been sick for a couple weeks prior, but thought it was all just allergies.  Fast forward.  If you look at the picture I have attached the dark black circle is my trachea, if you look straight down you will see a whitish ring.  This is where the opening is supposed to be.  All the rest of that area is scar tissue FROM THE INTIBATION.  He said I am just one of the few VERY UNLUCKY people., he honestly said that about 10 times...how unlucky I am lol.   All of my auto immune tests came back negative.  He doesn't want to do the surgery that could be done because he thinks it may do more harm than good.  He w...