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Spina Bifida Does NOT Have ME !

 

My name is Jessica Menley I was born with Spina Bifida, Today there is better hope treatments fetal surgeries that can help stop the process of more damage to the spinal cord.Which in turn can stop the process of any further nerve damage.

As for me I was born in 1984 when these surgeries were not known about, the only treatments at that time was surgery after birth to close the spine, as well as physical therapy.

Every year I had to go to Arnold Palmer hospital for children and women in Orlando, FL. I under went multiple tests MRI's, Renal ultrasounds, Voiding systagrams.

I hated it! Sometimes I felt like a lab rat and even wondered if some of these surgeries were even necessary. I felt exhausted and drained a little more with each spinal cord surgery.

School was very difficult for me! I made good grades but, I didn't want to be there every one bullied, made fun of the way I walked. I remember a group of kids pinning me down, they held me down on the ground while the others threw honey mustard, ketchup, juice, they all cracked eggs on my head.

It was horrible I cried everyday, I asked myself why me? Later I became older, more confident. A lot of people started to be more understanding, after talking to me, seeing that even though I walked different, have other issues I'm just like them!

I was a normal teenager wanting to have fun, party, socialize. I really didn't have much boyfriends in school But, when I turned 15 that changed, It was hard going through the boy phase.

I wasn't shy one bit, I was insecure about myself, It took me a long time to open up to anyone. Sex was something I was deathly afraid of because of my body being different then the "average" females body.

I remember being 16 years old getting some test done. Dr. was talking about how I'd never be able to have kids, I said to the DR. My mom also heard I'd never be able to walk, talk, or crawl. Now remember this was back in the 80s, Spina Bifida wasn't as common as it is today.

Fast forward 5 years later. At the age of 21 I meet back up with the man that would become the father of my children, by this time I had been in 3 different relationships, I was more comfortable with me.

Right before falling in love with my kids father I have had a total of 21 surgeries most of them being a tethered cord release surgery 2 on my right foot 2 on kidneys and one on my bladder.

One of my tethered cord release they had complication trying to untether the scar tissue and I couldn't walk anymore and my neurologist said I probably wouldn't walk

I went thru therapy everyday each tiny step I took was deemed to be a miracle I had alot of encouragements from nurses and physical therapists.
Couple years later, At the age of 23 surprise! My period just stopped, wasn't a norm. Now with my history and records, I was told to wait 2 weeks because, it was thought "it would never happen" Do you think I listened to them?

No way not me! I went and purchased a home pregnancy test, a EPT pregnancy test, low and behold it was positive.
At first I was scared, nervous, kinda freaking out a bit, I told Josh, my kids father take me to the ER NOW, with the positive pregnancy test.

They took me back right away like it was no joke, they took my blood confirmed a pregnancy. They wanted to make sure it wasn't a Ectopic pregnancy because, that's what they were worried about happening, not a actually pregnancy.

They couldn't be more wrong! No baby was trying to form in my Fallopian tube, my baby girl strong and healthy, looking like a little peanut. I was 8 weeks along when I saw her on the ultrasound. I teared with joy the kids father was overcome with joy as well. such a beautiful time 

Fast forward. Nine months later a gave birth cesarean, Dr. Said all the pushing would be a lot of stress on my spine. My Healthy baby girl born 09/27/07 She filled me and others with such joy and inspirations! DR. and Nurses called them miracle babies. She was small, that was a known fact. Nothing over 6 pounds would come out of me Destiny was 5lbs. 14 Oz at birth.

Being a parent helped me to fight battles I didn't see coming, Though it was difficult that's ok! Life has been difficult for me. The only problem I had when it came to parenting is, I didn't feel comfortable carrying my babies upstairs, my balance is horrible thanks to Spina Bifida. Stairs are a challenge, Everything else luckily became natural.

Fast forward a year later. I'm pregnant again. My kids father decided it was time for us to get married at the end of my pregnancy, It was the worse time trust me (lol). I had a tiny body with a fat baby bump in a wedding dress (lol). On July 19th of 09,  my baby boy was born small but healthy 5lbs 8oz.

Dr. and the O.B.G.Y.N highly recommended tubal ligation to avoid further scarring in that area which was already scarred from the first c section and from past Kidney Reflux surgeries,Since they were already in that area bringing my babies into this world they did the tubal ligation

A little while after having my son I started getting what my doctors and everyone thought was just a UTI. Which was a norm for me having a bladder that didn't function properly

These were especially bad my stomach burned my kidneys. It hurt so bad,  I started getting really drained for no apparent reason. I was tired and sick, I was not hungry. I started getting skin tearing and infected Sabacious cyst.

I was put on antibiotics and started to feel a little better and the skin tearing and cysts healed and stopped

While my husband had his break down, I moved in with my sister along with my two young children. I started becoming symptomatic again, only this time I'm just falling out passing out then waking back up worried about where my two small children were and how long I was out. Then all the sudden symptoms once again stopped.

At this time,  it's December 2010 and Destiny is 3 and Josiah is 17 months I started talking to a friend I met in Michigan where my aunt lived. His name was Kris. I didn't mention him before because he was not really apart of my life till much later.

We started talking through social media text and phone calls sending pics and flirting. He was going through his divorce and I was going through my separation with my husband.

We became fastly attached and in January kris flew from Madison Wisconsin to Raliegh North Carolina to come visit me. I'll spare you the details there lol. We had along distant relationship keeping in touch via email social media phone calls text and video chats. We took turns flying. Kris would buy my tickets. We couldn't bare the distance and he flew me up February 2011 and we got into our first apartment together.

Just when I thought I was great, BOOM I'm sicker then ever spiking high dangerous temperatures passing out and I couldn't pee, I couldn't even get a catheter inside me, Kris rushed me to the er and I was seen by two different urologists who sent me to a urologist that specializes in bladder cancer but they said that doesn't mean I have it, They are not trained to detect a cancerous growth, Well, Dr Downs found the cancerous growth blocking my urine from being able to flow so it was splashing up into my kidneys making me more sick.

The doctors had to literally force a catheter in to drain my full sick and angry bladder so that the urine in my kidneys that was trapped in there due to having no room could drain out finally!

I wasn't able to eat, I lost weight and I was literally dying. I was fading away. I got all the way down to 60 pounds in weight, I was diagnosed with invasive stage 3 bladder cancer and if I wanted a chance to live I needed to let him remove my bladder ASAP or take a chance and hope chemo would help.

In July 2012, doctors removed my bladder and I was kinda excited. Why? Because they had a new invention called a neo bladder which is a man made bladder where you can actually just pee like everyone else!

Well, that surgery ended up being a no, I was too small, there wasn't enough room for this man made bladder, So, now I have what is called a Indian pouch on the inside in place of where my bladder was,and connected to all the tubes my cancerous bladder was.

I have a Stoma on my belly that I have to use to drain the pouch with. But I'm alive and here for my kids and that's what matters most!  I'm a fighter and a survivor!

Today I function really well. It took a lot of hard work, courage and confidence to get to where I am today Life's a journey, you have to  choose your path when life deals you the most complicated hand ever. You need to take your own path.

 

You can't say " I can't"  even if they say it's impossible. No matter how  painful and exhausting it is, you have to get yourself back up and try again You have to keep trying as if your life depended on it. Miracles still happen everyday!

I have had a total of 21 surgeries. Most of them being a tethered cord release surgery, i also had two surgeries on my right foot  on kidneys.One of my tethered cord release they had complication trying to un-tether the scar tissue and I couldn't walk anymore and my neurologist said I probably wouldn't walk.

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