I just need a break from life.

I have been having a really hard time lately with everything that is going on. I sprained my ankle and even though it's feeling better, the overcompensation is killing my back.

Going to PT and working full time is so exhausting. I have a butt load of  medical bills. I gained back two pounds of the five that I lost. None of my clothes fit and I feel like a fat cow. I know there is no answer, but I keep wondering why this is all happening to me.

I miss going to the gym, dancing, being pain free, going out with friends, having a beer at a sporting event, babysitting my nieces. The list goes on and on.

I so badly want to be that woman who doesn't let things bother her, who bounces back when she is pushed down time and time again. I want to be able to let things roll off my back (no pun intended). I just feel like no matter how hard I try, the more resistance I receive.

I want to be strong and become a role model for young girls who have any disability. I want young girls to see that they can graduate high school, get their drivers license, go to college, date, have a career, be independent, but I don't know how to be that role model when I feel like I am losing everything I have worked for and did nothing to deserve it.

Pity Party for 1

I had a rough week. My pain has been awful! The change in the weather has done me dirty! I have eaten cereal for dinner this whole week because I am so exhausted! It took all I had just to shower. I don't know if there is a depression component to how I am feeling. I am currently on Paxil and my nerve pain medication was at one time used as a mood booster/anti-depressant.

I think I need to start being nicer to myself. I try to keep as positive as I can, but sometimes it's just difficult and I need to cry. People expect too much out of me. I just want to scream! Oh and why do people say, "oh you look good, I mean, for everything you have been through." WHY?! Can't you leave the ending off! I know I am 30 + lbs overweight. I know I don't kook the same as I used to look, but I am still the same person.  I know I can't expect everyone to understand, but a little filter in what they say, could go a long way!


In better news, my port scar is looking less like a hickey! So there's that!

Helllllllppppp!

Why is it so difficult to ask for help? I always try my best to help people in need, but I can't seem to be on the receiving end.

I am having a really hard time with working full time, doing PT, and keeping up with life! I need help!

I can't vacuum. I can't do laundry. I can't sweep or mop, or take the trash out. Who wants to do these things for her or himself, much less another person. I just can't seem to ask for help.

Today I finally asked my sister for help. I was down to 1 pair of clean underwear before asking her. She gladly did my laundry, cleaned my bathroom, vacuumed, and more. Now I wish I had asked her sooner.

I miss being independent. I went from waitressing and running races to using a wheelchair to conserve my energy. I just need to accept this as my new life...

Life.

I have been back to work for 3 weeks now and I am exhausted. I don't use the stairs at work yet, but baby steps. I really don't need to fall.

In addition to returning to work, I started outpatient physical therapy. Oh and the doctor who told me I had a seroma, was wrong. According to my neurosurgeon it was a pocket of spinal fluid and it would just resolve itself.

Oh and here is a picture of the scar. The picture is a little crooked, but it's hard to take a pic of your back! I know it looks like a super long butt crack, but I don't care. Most people wouldn't have half the strength to go through what I have been through, especially these last couple years!

Setbacks!

I know setbacks are all part of this game called Life, but for God's sake, does a doctor really have to talk down to me like I'm a moron and haven't lived in this body longer than his time in medical school.

On Friday, yes, Good Friday, even though there was nothing good about it, I felt moisture on my incision where it already healed. I freaked out! Every time I got to the hospital I immediately think, "this is it! Everything I have worked for will be gone. My job, my car, my house, my independence, GONE!"

I get to the ER and the Dr. says to me, "why did you come here?" after I told him what was going on. "we don't have back doctors here!"  SERIOUSLY! So if someone breaks their foot, do you tell them, "sorry, we don't have foot doctors here!" I wanted to scream!!! I told him I was in pain and he treated me like I was trying just to get drugs! Then the CT scan came back, and guess what?! I had a seroma, a pocket of fluid under my incision, pushing down on a nerve in my back! I deserve an apology, but I won't hold my breath. "I just love going to the hospital, especially on my 3-day weekend!"

I'm becoming more and more disgusted with the medical field. I feel like my neurosurgeon is rare find. He actually listens and cares! Imagine that!

On Saturday I was feeling a lot better. I had tickets to a pre-season baseball game. It was a little windy, but other than that, it was a beautiful day!

Back to Work!

I went back to work this past Monday and while it feels great, I am exhausted!

My incision is still healing! It looks good so far. I am waiting for the last "hole" to heal. It looks like I have a buttocks on my back, but I'll sacrifice my looks to feel better! Plus, It's not like I have to look at it anyway!  I just can't wait until it heals completely because it is throwing off my routine due to the fact that I need someone to dress and re-dress it.

In addition to returning to work, I am trying to lose the weight I gained before and after surgery. I am hoping it will fall off as fast as it went on. I already lost 5 pounds just by getting up and going to work. I hope I don't gain it back at Easter Dinner!

UTI UGH!

The last week and a half my home care nurses were concerned because my blood pressure and heart rate were high. I also had a low-grade fever. I went to the doctor's and sure enough: UTI confirmed. As if I didn't have enough medicine to take!

My nerve pain is still horrible. I have hope that once the weather becomes warmer, it might relieve some of my pain. If that's the case, I'm moving somewhere where it's warm all year round. Plus a change of scenery may help. Hmmmm....

Oh and in better news, my last wound closed .2 cm. So now It's .4 cm. I's .4 cm away from returning to work!! SQUEEEEEEEEE

WHAT IS WRONG WITH ME???

As stated in Friday's post, my blood pressure and heart rate were elevated. I had physical therapy today and both are even higher today. I don't know why I am having these issues! It's super frustrating. I know I am doing everything and anything to help my body heal, but it feels like I'm going against the current.

The last thing I want/need is another setback. I just want my normal life back. I think I know where all of these issues are taking me. The end result will be a wheelchair, but I'm not ready! I want to wake up early every morning and be tired because I took work home the night before. I want to be crazy busy and run around like a chicken with its head cut off. I miss all of these things! I may not appreciate them in the moment, but at the end of the day, I love my job; my daily routine; my life. It sucks that something can occur one day and your whole life is effected. If you're reading this, don't ever take your abilities for granted. They are not guaranteed for life!

3 steps forward, 4 steps back...

I had my first physical therapy session this morning. I have been experiencing a lot of pain lately. I tried to just get by with Tylenol or Ibuprofen, but my blood pressure and heart rate got too high and I had to return to pain medication. Blah! A minor setback, but I will just deal with it like I have been!

In better news, my nurse seems to think my wound will be completely healed in 2-3 weeks! As soon as it's healed, I can drive and go to outpatient therapy. That means I can go back to work at least part time! YAY!

I know I have been contemplating whether or not to share a picture of my scar. I have decided to share. I am hoping this will help children and other adults with S.B. to not be ashamed of their scars and/or body. 

So here it is: Even though it looks like my buttocks, it's just my back.

FUUUUUUUUUUUDDDDDGGGGGE!

So apparently the bottom of my incision has decided to split open. Two of the three original holes have closed. The one that split open has doubled in depth in 5 short days. If this wound decides not to heal, I will be going back to the OR. UGH! This sucks so much! I don't even know what I can do to help the hole heal due to it's location. Every time I sit down or bend over, it re-splits.

My leg and back spasms and neuropathy have been so painful! I don't know if its the weather or what, but I'm hoping it all goes away soon.! UGH!

Sometimes...

Sometimes I feel like giving up. I am in so much pain all the time and nothing is helping. I've tried medications, light exercise, heat and ice. Nothing helps! It's becoming very frustrating.

I remember my doctor at the SB Clinic telling me that my future is questionable and I could end up in a wheelchair permanently, but doctors also told my mom that I would be mentally challenged and never be able to walk. I just don't know how much fight I have left.

I think part of my negative attitude is that I am sick of healthcare professionals half-assing everything! This is my life and if things aren't done properly, I am the one going back under the knife!

I think I am just tired, annoyed, and in a lot of pain! Here's to a better day tomorrow!

Saran Saran (get it? Duran Duran)

you have to make the best out of a situation, make do with what you have, and laugh at yourself! I just did all three!

Since my family is away and my nurse just comes to re-dress my wound, I found a way to shower on my own! How you ask? A shower bench, a hand-held shower head, and saran wrap! yes, saran wrap! I wrapped the saran wrap around my waist so that it covered my wound dressing so it didn't get wet!

I am happy to report Operation Saran wrap Shower was a success!!

The Healing Process...

The healing process is so strange to me! One day I feel great and I'm up and doing things within my restrictions. The next day I can't get out of bed because I feel like I've been hit by a truck. Body, make up your mind! Please and thank you!

I had a minor scare this morning when someone rang the doorbell. I went downstairs carefully or at least I thought so, until I slipped and my foot skipped a step. It scared the crap out of me! Lesson learned! No steps while home alone!

Meanwhile in scar news, my mom has been taking pictures of it as it heals. I don't know if I'm ready to share the pics on the internet yet as I have just decided to look at them myself.

Tuesday is my next appointment and I will learn where I am in the healing process. My goal is to make it back to work on or before March 19. If that is realistic, I am willing to do anything to meet my goal!

Small Steps...

Slow and steady wins the race, right? I have finally taken a small step in recovery from spinal cord surgery. I exchange my non-slip socks to regular socks! Small steps, right?

In other news, I have been watching an embarrassing amount of Maury episodes, along with other trash tv! At least when I return to work, I won't feel like I'm missing anything, or there is always DVR.

I don't think I mentioned how much I hate insurance companies! I know they aren't in business to send you money, but I have so much into my private disability police and they are just taking their time approving it! UGH!

Insurance Company Saga to be continued... 

Finally...SLEEP!!

I have been sleeping better and better with everyday that passes! Thank God! Also, I found out that my insurance is going to cover my home nursing 100%, which is awesome!

In not so great news, I gained a lot of weight. I know that lack of being able to do things contributed to the gain, but I have been eating like crap! This morning I had a bowl of Special K and soy milk! You have to start somewhere, right?

I'm really hoping I can start physical therapy after my next appointment on 2/10. Since I am considered "homebound", there is a possibility that I can receive in home physical therapy, which would be great since I can't drive.

My mom has been amazing through everything. Not many mothers would spent every night by their adult daughter's side to make sure she doesn't do too much. She goes to work super early in the morning and has been working full time and take care of me. I am trying to think of something nice to do for her after all is said and done.

Well that was close...

Yesterday my mom was re-dressing my wound on my spine and she told me it looked really like the infection got worse. She took a picture of it and sent it to my doctor's assistant. My doctor called me told me to get to his office so he could look at it and admit me to the hospital to get it washed out the next day.

When I got to the doctor's office, he told me it looked worse in the picture and he proceeded to clean it out (ouch!) and was okay with me going home as long as I have a wound nurse come to the house to clean and dress it.

I was so relieved! Last thing I wanted was to get admitted to the hospital again. I hope I can heal without any more hiccups! If there are more then I will deal with them head on and think positively because "this too shall pass..."

Insomnia...

Insomnia is thee worst! I am currently out of work due to my surgery, yet it's 4 AM and I can't sleep. I'm supposed to be resting, but how in the world can I do that when I'm wide awake at this time. It doesn't help that my back is still in so much pain. Blah!


In other news, I think I have finally made my decision about moving to Florida. I think I am just going to go for it! I will stay in here for the next year or two and then I am going to be Florida bound. I can't wait! I have been looking at condos and townhomes. I have also been looking at available jobs in my field. I would make more money in a lower cost of living area. As weird as it sounds, my new life will begin in a new location, along with my new back lol! Seriously though, having the spinal cord surgery can actually reverse some of my minor nerve damage. We shall see 6-12 months post op because  it is too early to tell at the moment.

In the meantime, do I try to fall back to sleep or start brewing my coffee? Decisions decisions....

 

My First Post

After many years of going back and forth on whether to create a blog, I decided it was time. I am currently recovering from tethered spinal cord surgery and I have decided that I would use this blog as an outlet for my feeling, but more importantly, to educate people about S.B.


I have to self-catherize myself, which I have been doing since I was 4 years old. If I didn't learn how to do it, I would not have been allowed to attend regular public school. S.B. comes into your life bearing gifts that you can't return. The issue with S.B is that there is no such thing as a Spina Bifida doctor, as SB effects different parts of the body in so many ways. I have a primary doctor, a urologist, urological surgeon, neurologist, neurosurgeon, gastroenterologist, gastrosurgeon, cardiologist, physiatrist, and a psychiatrist and counselor to deal with all of it! I also go to counseling to learn how to deal and cope with people's reactions. When people look at me, they don't see a sick woman; they see someone using a handicap bathroom stall while their elderly mother is in a wheel chair waiting for that stall and I receive dirty looks for it.

 The worst was when I was in school and the teachers would refuse to allow me to go to the restroom. One time in college, the professor embarrassed me in front of the whole class when I got up to use the restroom. She said "if you can't sit through a class that is only an hour and half without having to use the restroom, then you need to see a doctor because there is something seriously wrong with you." The next class the professor made me switch seats with a guy sitting by the door in front of the whole class after I gave her my doctor's note. She announced "since you have issues and have to pee every 5 minutes, switch seats with Robert so you are by the door and don't interrupt my class THAT much." I was mortified. The professor was not asked to come back the following year.

                                                          My Medical History

In 1986, I was born with a "fatty" tumor on my spine. The tumor was removed, but it was too late. The damage to my spinal cord was already done. After many failed attempted of closing the hole in my spine, I ultimately had to have a shunt placed in my head to stop the leakage of spinal fluid. My parents were told I wouldn't be able to walk and would most likely suffer from mental retardation. Well those doctors were proved to be wrong as I WALKED at 4 school graduations.

In 1990, I was suffering from reoccurring kidney and bladder infections. I had to have my ureters, tubes that connect your bladder to your kidneys, crossed to prevent reflux and keep the infections in my bladder instead of having it spread to my kidneys. Unfortunately, this surgery is my first memory as a child. Not only because of the pain associated with the surgery, but the hospital had a regular Nintendo Game System and I would forward to my turn to play despite having IVs in both of my hands! I spent 40 days in the hospital at the age of 4.

In 1997, I had to have my shunt fixed due to the tubing tethering in my neck. That surgery was successful and I continued to live an almost normal life. I started working when I was 14. I waited table for 10 years! Yes, I waited tables when I was supposed to be the girl that wouldn't be able to walk! I played sports. I was awful, but I still played.I graduated high school, community college, and university. I have Bachelor's Degree in Law and Justice Studies and I work full time as a paralegal, which I love.

I was doing really well, until 2013 happened. I had a small procedure done and what was supposed to take 30 minutes outpatient, sent me to the hospital for 18 days and rehab for 18 days. I was paralyzed from the waist down and had to learn to walk again. At that time, I found out my spinal cord was tethered. Despite trying all the medications, nothing could stop the pain I was experiencing. So I ended up having surgery get rid of all the scar tissue from my surgery when I was an infant.

Now, I am on the road to recovery and will have plenty of time to blog! At least it will pass the time!

Introduction

Hi! I am Jane and welcome to my life! I decided to create this blog after I started to experience complications from being born with Lipomeningocele Spina Bifida (S.B). When I was younger, I never wanted people to know about my "disability". Most people with S.B. are paralyzed and have to use a wheelchair or another device to ambulate. I have never had to use a device until I started suffering from complications; therefore, it was easy to hide my illness. I went from running 5Ks and waiting tables to frequent hospitalizations and chronic pain. Now that I am suffering from complications, I can no longer keep my secret. For 28 years most people didn't know of my diagnosis. This blog will describe my journey of living with S.B. and my decision to stop being ashamed and start living my life the way I deserve because I have finally realized there is more to ME than S.B.