A day in my life: living with sma

Hello friends,

I know that I have been absent, and for that I am sorry. Let me fill you in on what has happened since we last talked. I had the best summer I’ve had in a while. My cousin Hannah and I hung out several times. We had sleepovers, ulta tripe and plenty of Starbucks dates. We had a great time going out to dinner and the movies. I went to vent camp and I saw my friends who I haven’t seen in forever. I was partnered up with my girl Julia , after fourteen years we were partners in crime yet again. I made new friends and lots of new memories. I got asked to the dance by a good friend Kenny (if you are reading this Kenny thank you for a great time). After camp I got to see my pop pop and my grandpa from Alabama for a week and a half. We hung out at the house and we even went on a trip to Gettysburg. My mom treated ourselves to get pedicures and shopping at target. I got together with Julia and the rest of the bridesmaids and the maid of honor for selecting our dresses. We went to Red Robin and Julia followed us back to my house for a sleepover. Later that night we ordered chic fil a. I got my sixth tattoo and I got my cartilage redone. I was fortunate to get to go to two concerts. I saw Florida Georgia Line and Dan and Shay, they were amazing. Then a childhood dream came true, i got to see the Jonas Brothers in concert. It was the best night I’ve had in forever. Then I went to Julia’s bridal shower and had a great time. Thank you so much to everyone who made this happen for me.

Today’s topic is about pain.

The definition of pain-physical suffering or discomfort caused by illness or injury. Pain is what you make of it. I have chronic pain everyday, mostly my back and my left hip. I am no stranger to being in pain and being uncomfortable. I have sma,diaphragmatic dysfunction, trached and vented,dislocated hip,osteoporosis,scoliosis,anxiety and depression. I have had chronic pain for about 5 years, ever since my last surgery. My last surgery was May 2015 and it was a spinal fusion/hip surgery. If you don’t know what this means here’s a brief explanation.Spinal fusion/hip surgery is basically when your surgeon inserts rods and pins and screws in your hips and back, to try to prevent your spine from getting worse. In my 34 surgeries this one was the worst. After my surgery I was on OxyContin and Tylenol with codine. After being on those two meds for a while I couldn’t take it anymore because I was missing out so much in life. I decided it was time to talk to my dr. I underwent a 3 hour nerve conduction test and changed my medication to neurotin. After 4.5 years I decided to try a better alternative which is medical marijuana and I have amazing results. My pain is as low as it has been in years.

Yesterday was a great day for me. I woke up around 9 am then I got breakfast, I had a salad because typically I don’t eat breakfast food. I had my hair cut makeup done by my nurse. I had a great surprise from my mom when she got home from work. We got all packed up and we had a date night. We first had to go to the eye dr because my glasses were starting to come apart. We went to dinner at Logan’s steakhouse for the first time can I say it was amazing. The fried shrimp was honestly the best I’ve ever had ( and I’ve had a lot). Then it was off to target and Starbucks. Psa the dragon drink is disgusting but the new caramel ribbon frappe is amazing.

1. If I could change one thing about the world what would it be? There are a lot of things I wish I could change about the world, animal cruelty is the biggest thing I wish I could change.

2. If I could fix one problem with people what would I fix? Body shaming. We need to build people up not tear them down, especially young girls.

3. What is one thing i want to do this summer? There’s a lot I want to do this summer, I really want to go to the zoo and take pictures with the animals.

4. What is my favorite childhood memory? My favorite childhood memory is when I got my baby girl Nikita and all the time I had with her.

5. What’s my favorite color? Black

6. Would I consider writing a book? Yes

Yesterday was a good day. I woke up at 8 am and watched tv in my bed. I was watching a really good medical show called New Amsterdam and snuggled with my baby boy. I had breakfast in bed with sarge trying to eat my food. Laid in bed till my nurse got here at 12, got out of bed and got lunch we had Jersey Mike’s. Hung out till my night nurse got here, packed up my equipment and walked up with Joey to the new Dunkin’ We got iced coffees and donuts, sat for about 15 minutes then we came home. When my mom got home from work we watched the new game of thrones During the episode I got really nauseous and started dry heaving I don’t know why I got sick. Went to bed after game of thrones and slept. I feel all better today.

Today’s blog post is about my fur babies. I got my babies for my 18th birthday because there was a hole that only they could fill. They have brought me so much love and happiness. They help me with my anxiety and depression. Beauty and sarge are my best friends.

Update on my life: I know have been nowhere to be found and for that I’m sorry. I have been in a very bad place in my life, lately anxiety anxiety and depression has been ruling my life. I have let this go on for too long, as a result I’m going to be going to therapy. For reasons I’d rather not get into my hope is to get my life back.

I know I have not blogged in a few days, that’s because I have not been feeling like myself. I suffer from depression and anxiety. I have had depression and anxiety for as long as I can remember. My anxiety really affects me when I am in huge crowds and when I have medical procedures done. I used to dread having to talk in public. I have gotten better throughout the years, but even at 19 years old I still get really bad anxiety it gets to the point sometimes I get sick to my stomach. My relief from everything is my friends and family and my two babies.

Dating is hard enough for people these days, let alone dating when you have a disability. There is a stigma about people dating when they have a disability. People think a disabled person is diseased or mentally disabled, therefore they cannot date. I’m trached and vented and in a wheelchair, like any normal person I have crushes and I like to be liked back. I have had one boyfriend in my life and I have had many crushes. I fully believe in breaking the stigma of dating with disabilities. Many times I have liked someone and treated me like I was diseased or they lied and flirted with me and then posted on social media that they were in a relationship, that broke me a few too many times. I believe when the time is right I will find that special someone , until the time comes I’m happy with my cats.

PERSEVERANCE

The dictionary defines perseverance as a “continued effort to do or achieve something despite difficulties, failure, or opposition.”  I would agree with that definition of not giving up. My friend Katy is the person I think she demonstrates perseverance.  Katy and I met during my first year at PA Vent Camp.  Katy was my helper, and soon became one of my best friends.  Katy is a college student, who is beautiful, kind, and strong.  Katy has a rare genetic disorder called, superior mesenteric artery (SMA) syndrome, a gastro-vascular disorder.  Before Katy was diagnosed with SMAS she went through a series of tests and she persevered and finally got a diagnosis. She has some days that are good but most days are bad. Katy stays strong and perseveres. She does go slowly but does not stop.
  When living with a chronic medical condition, or facing any challenge, it is perseverance that can help you through.  Having a chronic medical condition there are days when you feel like you can’t get out of bed because it hurts too much Katy is so inspirational she says her friends and family and her patients and God gives her motivation to get out of bed every day. I am consistently inspired by her strength and her willingness to do what she does every day. She says her anxiety and depression relief is the love of her life her dog Luna. She goes to the gym and writes in a journal as an escape from the real world and to keep her sanity. We have plans for a photo shoot and matching tattoos this summer for her birthday. I love her so much, more than she will ever know.