Author: livewithoutlimits19

Today’s blog post is about a day in the life of me.

A typical day for me usually starts at 4:30 am, this is when I get washed up for the day get dressed and go back to sleep til about 8 am. I start my treatment regiment around 7 am, my treatments consist of a nebulizer treatment of albuterol and 3% saline to help open my lungs. This prevents thick secretions and makes it easy for me to breathe. After my neb treatment, I get my cough assist if you don’t know what this is it is a machine that forces air in my lungs because I don’t have a strong enough cough to get my lungs cleared. After I do that, I get an inhaler to keep my lungs nice and open. After my treatments are done it is time to do my exercise routine this consists of me sitting on the edge of my bed and a few leg exercises to work on my core muscles so I can maintain what strength I do have. When that is done I get in my wheelchair and go in the living room and get breakfast. I get another neb treatment at 11 which usually lasts about 30-45 minutes. Depending on what day it is how I schedule my day for example, Monday, Wednesday and Friday I have an amazing cna come in and washes and styles my hair. Tuesday and Thursday I have my awesome occupational therapist come and stretch my arms and I do my makeup with her. Then I get yet another neb treatment at 3 then my nurse and I finish my medical routine and my nurse leaves at 4. After my nurse leaves for the day from 4-10 my mom and my brother take care of me. My night nurse who is the best nurse in the world comes at 10 and receives report from mom, so my mom can sleep and have a break. I go back to my bedroom and have another neb treatment and I get my theravest for 30 minutes which shakes me so my secretions don’t get thick ( doesn’t help at all). Then the rest of my medical treatments which doesn’t end till midnight. Then I sleep for 3 hours and I have leg stretched and my last neb and cough assist treatment. Then at 4:30 am is when I get washed up and dressed for the day.

Yesterday was a great day with friends. I went to David’s bridal and Red Robin with a few of my friends because I am a bridesmaid in my best friend Julia’s wedding this year. Julia and I met at vent camp 14 years ago, she was my very first helper and I was her first camper. We have been through so much together such as she came to my high school graduation and we are going to a concert together and this October I will be a bridesmaid in her wedding. After lunch and dress shopping Julia followed us home and slept over. Julia spending the night is a very big deal because she does not sleep anywhere but her own bed. We spent the night talking and we ordered chic fil a. I love you so much Jules.

I know I missed yesterday’s blog post but I had a very long and busy and very stressful day. My day started at 7 am when my treatment routine began after my treatments I had to get out of bed, got my makeup done. I had 2 appointments lined up for the day and we had to go out in the rain. The first appointment didn’t go as we had hoped but it was okay we went to Starbucks and Wendy’s. The second appointment went fine and it was time to go home. The rest of the night included I worked then laid in bed watching movies and eating dinner with my family.

Today’s blog is all about my mom. My mom is my best friend. She is the strongest woman I know. Having a child with a disability certainly isn’t easy. She has 3 jobs and her job doesn’t stop there. A normal day for my mom consists of waking up at 5:45 am. Gets report from my nurse, feeds my babies then checks to see if I need anything. Gets her shower does her makeup while waiting for my nurse to arrive. When my nurse gets to the house mom gives report at 7. She leaves for work by 8 goes to work till 2 goes to the store or whatever errands she has to do that day. Comes home by 4 to relieve my nurse, after the nurse leaves she cooks and cleans. Then we have the rest of the night to ourselves till the night nurse arrives at 10 gives report and goes to bed, does it all the next day

Today’s blog will be a q&a

1. What keeps me going every day? My family and my friends. I have sma but I’m alive so we might as well live as best as I can.

2. What got me into makeup? What’s my favorite style of makeup I always saw my mom doing her makeup and it was love at first sight. My favorite style of makeup is a natural eye with a little glitter and a wing.

3. Who is my hero? My mom is definitely my hero because of how strong she is. She is a supermom.

4. What inspires me the most? My mom inspires me the most. She is an amazing mom.

5. What is some advice I would give to someone who feels like giving up?

My advice is don’t ever give up on yourself. Tomorrow will be a better day

6. .What are the 5 top things that I’m most grateful for? 1. My family and my children 2. My friends 3. My health 4. Vent camp 5. My nurses

7. What has been my biggest obstacle?

My anxiety and depression.

8. If I could spend an entire day with someone (famous, past, present) who would it be and what would I do? Freddie Mercury aka farrokh Bulsara We would bask in his AMAZINGNESS and I would make him sing to me. Specifically bohemian rhapsody and radio ga ga.

9. What is my best piece of advice?

My best advice would have to be you are beautiful no matter what and don’t give up on yourself.

10. Advice for any student in school? Ask for help don’t be embarrassed.

11. What motivates you?

My mom and my friends

12. If I had to do something different in my life, what would it be? What is my opinion on physician assisted suicide? I would have the proper equipment for getting another job. My opinion on physician assisted suicide is only you know how much you can handle.

13. What do I most want to do today, tomorrow, next week,next year?

Be a better daughter,sister, niece, cousin and math tutor

14. What piece of guidance and inspiration you have for most days ? No matter how bad life is going life will get better. Get up throw a messy bun in your hair and do a winged eyeliner and be a boss.

15. When I see a successful life how would I describe it? How would I say society sees success vs what we see it as? Success for me is if you are happy and healthy. I think society sees success based on how rich you are and how far you are in status.

Having countless surgeries, various therapies weekly to maintain strength and function, and being a frequent flyer at the hospital for surgeries and illnesses that arise when you are going to school can become quite hectic and rather overwhelming. When I was in elementary school my mom enrolled me into homebound instruction. Homebound instruction is when teachers came to my home and we had mini school sessions and worked on the current material I was learning, because I was too sick and fragile to attend school physically and had to remain home during cold and flu season. Over the years I missed a lot of school leaving large gaps in my learning. Because of this, school became very tough for me. Math being the worst subject for me to grasp. Math actually caused me very bad anxiety. When I was in 8th grade I decided to remain home for schooling the entire school year because my anxiety was that bad. At the same time I was very depressed because I felt alienated from my peers when I did attend school. I can truthfully say for me it was the best decision I ever made. The beginning of 9th grade was a whirlwind of emotions for me. My health had declined to the point I couldn’t breathe on my own anymore and I had to have a tracheostomy. That didn’t go as planned and I ended up not being able to come off the ventilator. Between my trach surgery and recovery in the hospital and rehab I spent weeks on end away from home adjusting to my new way of life. Three days after being home an emergency arose. I almost died in my moms arms because my trach became ecluded from a mucus plug I couldn’t clear. If it weren’t for my mom and my aunt I would have died that day. A few months after, I had a spinal fusion and hip surgery. This too was a very lengthy hospital stay which set me back even more in school. Even though my work piled up I focused and actually completed school that year a month and a half early. I got hooked up with an amazing math teacher who gave me the confidence and new found love for math. I honestly had the best teachers for all of my subjects at that point. My grades began to skyrocket My last two remaining years of high school I ended up achieving National Honor Society. On graduation day I graduated with honors and wheeled myself across the stage to receive my diploma.

Growing up with a disability has its challenges. Therapies, surgeries, and illnesses was a pretty routine thing in my life. I had my first surgery when I was 2 years old, I had a G-tube or gastrointestinal tube instead here’s a little information on it: A G-tube is a feeding that goes into my stomach so I can get medicine and proper nutrients. I had to get one due to the fact I was not gaining enough weight. When I was 3 years old, I weighed a whole 17 pounds. people might think ” wow, that’s not really a lot.” But that was amazing to me. I have had 34 surgeries in my 19 years. Surgery can be a scary thing, but if you have the right surgeon and a good nursing staff, surgery really isn’t a bad thing. The first 15 years of my life consisted of more hospital stays and therapy sessions than anyone should have to endure. As much as I don’t want to say this (because I’m a little bit stubborn) therapy does help sometimes.

Having a neuromuscular disease such as sma or spinal muscular atrophy can make life a little bit difficult. Now if you don’t know what sma is here is a brief summary: Spinal muscular atrophy is a rare and debilitating autosomal recessive neuromuscular disease characterized by motor neuron degeneration and loss of muscle strength.
I was diagnosed at the age of two years old this is the usual diagnosis age. My mom noticed I wasn’t making the same progress as my cousin. Such as walking and my fingers were contracted. My mom took me a doctor, therefore, a series of tests were done. They referred us to a specialist where my mom and family were told I had a neurological disease. This shocked my whole family but it didn’t stop us