My daily routine...and more
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 off again at noon for my next set of nebs. This time there are only 2 and it takes about 20 minutes. I then have lunch and take my noon pills.
At 5pm my alarm goes off again for my nebs. This time I do 4 and it takes about 25 minutes. After that comes my shaky vest again for 20 minutes. Then it is time to eat supper and take my supper pills.
Then I get to spend some time with the boys!
At 10pm my alarm goes off for the last time to do my night time pills. This time I have 2 to do and it takes about 20 minutes. After my nebs are done it is time to do my tracheostomy cares and have a snack and take my night time pills. Finally then it is bedtime!
This may not look or sound like much, but in between I need to take time to be attached to my humidifier and catch my breath because I get so worn out from all the coughing up stuff from the nebs (which is good because i'm getting the crap out).
So, that is my typical day. I wish it was alarm goes off, get up and get ready and go to work, come home, make supper, family time and bed time. Hopefully, someday again it will be like that. I know I have indicated a lot on Facebook about my moods being up and down, and honestly, yes they are. If some of you honestly knew how I felt, you would understand. I am a 37 year old girl who was living a perfectly normal life, and mostly all of that was stripped away from me in one day. My job, my independence, my money, etc. By November all of my short term disability was used up. I didn't have any long term disability because, well I was a healthy young woman. My advice to everyone, no matter how healthy you are, if it is available to you, get it because you never know what will happen! I still have some memory and cognition problems. I tried cooking tonight...spaghetti that's it, and I failed. I was getting tired out standing there, and the water started boiling over, so I just put the noodles in the strainer quick, and the noodles were still hard. I have no voice what so ever....again. So, I'm not able to talk to the boys, read Jack a book or help him with his spelling words. This last week I was also diagnosed with Laryngopharyngeal Reflux (Acid in the throat). This could be playing a part of why I have the stenosis in my trachea. So, now I have to eat a bland, very bland diet. It will be interesting to see after I have my surgery on March 5th if it grows back with the new diet. Yup, I get lonely and bored. Especially not being able to talk and voice my own opinion. And, I'm not supposed to be in the public much, especially with my surgery coming up because it is very easy for me to get sick. I am not contagious however, so visitors are welcome! It's interesting though, I remember when my dad was sick and how I was treated by people and teachers at school, and now I see it happening to my kids, which is a shame. It really is sad how kids and adults alike can be bullies, especially when you know someone is going through such a hard time. And, you truly do see who cares when something like this happens. I am beyond thankful for my family, Bud and his family. Some people may think I am ungrateful, but it is the complete opposite. I have said I don't know how many times how I feel like a bother because this is honestly so much. So, if you are able to breathe through your mouth and nose and are able to talk please feel thankful. I am thankful I am even alive after all that has happened.
So, March 5th is the big day....the day after Dominic's 14th birthday I will have my first laser and balloon dilation surgery. I will have this done at Sacred Heart and will have to stay in the hospital at least 1 night. At this time she will also put in a smaller trach. She said that my case is the worst she has ever seen, and it may take several surgeries to get my airway open. And, depending on if it grows back I may have to have this done multiple times the rest of my life.
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 off again at noon for my next set of nebs. This time there are only 2 and it takes about 20 minutes. I then have lunch and take my noon pills.
At 5pm my alarm goes off again for my nebs. This time I do 4 and it takes about 25 minutes. After that comes my shaky vest again for 20 minutes. Then it is time to eat supper and take my supper pills.
Then I get to spend some time with the boys!
At 10pm my alarm goes off for the last time to do my night time pills. This time I have 2 to do and it takes about 20 minutes. After my nebs are done it is time to do my tracheostomy cares and have a snack and take my night time pills. Finally then it is bedtime!
This may not look or sound like much, but in between I need to take time to be attached to my humidifier and catch my breath because I get so worn out from all the coughing up stuff from the nebs (which is good because i'm getting the crap out).
So, that is my typical day. I wish it was alarm goes off, get up and get ready and go to work, come home, make supper, family time and bed time. Hopefully, someday again it will be like that. I know I have indicated a lot on Facebook about my moods being up and down, and honestly, yes they are. If some of you honestly knew how I felt, you would understand. I am a 37 year old girl who was living a perfectly normal life, and mostly all of that was stripped away from me in one day. My job, my independence, my money, etc. By November all of my short term disability was used up. I didn't have any long term disability because, well I was a healthy young woman. My advice to everyone, no matter how healthy you are, if it is available to you, get it because you never know what will happen! I still have some memory and cognition problems. I tried cooking tonight...spaghetti that's it, and I failed. I was getting tired out standing there, and the water started boiling over, so I just put the noodles in the strainer quick, and the noodles were still hard. I have no voice what so ever....again. So, I'm not able to talk to the boys, read Jack a book or help him with his spelling words. This last week I was also diagnosed with Laryngopharyngeal Reflux (Acid in the throat). This could be playing a part of why I have the stenosis in my trachea. So, now I have to eat a bland, very bland diet. It will be interesting to see after I have my surgery on March 5th if it grows back with the new diet. Yup, I get lonely and bored. Especially not being able to talk and voice my own opinion. And, I'm not supposed to be in the public much, especially with my surgery coming up because it is very easy for me to get sick. I am not contagious however, so visitors are welcome! It's interesting though, I remember when my dad was sick and how I was treated by people and teachers at school, and now I see it happening to my kids, which is a shame. It really is sad how kids and adults alike can be bullies, especially when you know someone is going through such a hard time. And, you truly do see who cares when something like this happens. I am beyond thankful for my family, Bud and his family. Some people may think I am ungrateful, but it is the complete opposite. I have said I don't know how many times how I feel like a bother because this is honestly so much. So, if you are able to breathe through your mouth and nose and are able to talk please feel thankful. I am thankful I am even alive after all that has happened.
So, March 5th is the big day....the day after Dominic's 14th birthday I will have my first laser and balloon dilation surgery. I will have this done at Sacred Heart and will have to stay in the hospital at least 1 night. At this time she will also put in a smaller trach. She said that my case is the worst she has ever seen, and it may take several surgeries to get my airway open. And, depending on if it grows back I may have to have this done multiple times the rest of my life.
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