Long Time No Post!

Hey y'all!   I know it's been a very long time (almost a year) since my last post and I am terribly sorry.  While I've had things going on I guess I just haven't had very much to say.  I was just reading a friend's blog and she posted a link to the blog of a teenager with terminal cancer.  The blog is called Alice's Bucket List and she is very inspirational.

So what has been going on with me since the last time I posted?  Well, since the end of September, I have been dealing with a pressure sore that has been extremely hard to heal.  I had surgery on it in October and then again in January.  When I went into the hospital at the end of September it was incidentally discovered that I also had a bowel block.  Just an fyi, those are all kinds of not fun.  So my wonderful plastic surgeon (I'm not being sarcastic there, he really is wonderful and very accommodating to my needs) couldn't operate on the wound until the bowel block was cleared up.  That took, I believe, about 4 days.  I was really sick and the days just ran together  for a couple weeks there.  That's the funny thing about being in the hospital for an extended period of time, after awhile time just runs together and it seems like every day is exactly the same.  Nine Inch Nails have a song by the same name.  The first verse of the song sort of explains how I have felt at different times during this ongoing ordeal:

I believe I can see the future
Cause I repeat the same routine
I think I used to have a purpose
But then again
That might have been a dream
I think I used to have a voice
Now I never make a sound
I just do what I've been told
I really don't want them to come around

The only glaring difference between how I have felt and that verse is the part about having a purpose.  Throughout this whole thing, I haven't doubted whether I have a purpose, but I'm not exactly sure what that purpose is.  However, I am told that I am an inspiration to people, so maybe that is my purpose; to inspire others to live life despite their circumstances.  

Anyway, I ended up going to rehab for a few weeks on complete bed rest and antibiotics.  Came home in the beginning of November.  And let me tell you, when I came home, my cat was so glad to see me! lol  Sunshine has always been relatively anti-social, but after I came back home, she got out of that a little bit.  So, I was home for the holidays!  I was hoping that I would be able to attend my brother's wedding near the end of that month, but I wasn't allowed to be up in my chair long enough. :(  It worked out though, that I got to see TONS of pictures and some video of the wedding from my mom and dad.  Well, the wound opened back up in January and got infected.  I had to go back into the hospital and have another surgery to close it as well as one to remove part of my left hip.  It was causing me a lot of pain and a breeding ground for infection, so that was a good solution.  Turns out that it really was a good solution because a lot of my chronic back pain was taken care of!  No rehab this time, but I did come home on an IV for the infection.  At least I was at home though.  Being home always beats being at the hospital- no matter how wonderful the nurses are; and I had some seriously awesome nurses this time. 

Fast forward a month and, not only do I now pretty much have a cling on kitty (seriously, she gets very possessive of my attention), but the sore opened up AGAIN!  Not the whole thing, but enough of it to throw me into an anxiety attack.  So now, I am back to home health visiting me to do dressing changes every few days (how often they have to do the dressing changes depends on what kind of dressing is being done) and hoping it will close back up.  I want it to close up so I can have my life back.  Like...now. 

I went to see my rheumatologist today.  Did I tell y'all that I was officially diagnosed with Rheumatoid Arthritis ?  He confirmed the diagnosis in March and also diagnosed me with Fibromyalgia.  Yeah, neither of those are very fun.  My supported living coach took me to the appointment and since it didn't even take an hour, we drove around a bit and even stopped at a couple stores to browse.  First we went to PetSmart because I wanted to price some cat condos for Sunshine.  I haven't decided whether I'll get her one or not, but I did like looking at the different ones.  We also looked at the Betta fish.  The turquoise one was my favorite!  And then one of the employees was taking one of the guinea pigs for a nail trim and I got to pet him for a couple minutes....SO cute!  The three cats in the back were my favorite though.  I love cats.  There was a calico (she looked very much like my dearly departed Maggie), a grey and white one, and an orange and white one.  All three let us pet them, but the calico was the most friendly; once you started petting her, she didn't want you to stop! lol  And then we stopped in at Belk's to browse before heading home.  It was a great day!  Though, when I got home, Sunshine was mad at me.  I think she was made about smelling the other cats on me!  

That's all for now.  Talk to y'all again soon! 

Erin

What A Difference Attitude Can Make!

Hi guys!

It's been almost a month, I know. I've not been feeling that great, have lacked motivation, and been busy with some medical stuff.  I'll explain that along with my chosen topic for this blog entry.  I was looking at some quotes a few minutes ago, and one in particular caught my attention and sparked me to write this. Winston Churchill said: "Attitude is a little thing that makes a big difference".  I've found that that is so true in my life!  The attitude I have really does determine how things affect me and how I react to them. I'm a generally positive person, but this is not to say that I never have a difficult time with things that are happening or expressing my feelings,  because I do.

About six or seven weeks back, I fractured my tibia, so I have been laid up with that and have also gotten a pressure sore on my heel now, so I'm going to a wound doctor quite frequently to help that heal.  Also, I've had a respiratory thing that's kept me under the weather, but it appears that is pretty much gone now.  So, while the fracture and sore are healing, I have withdrawn from school but am optimistic that I will be back for the September term.  This current situation does get a bit overwhelming and a bit depressing at times, and this little fact leads me into how attitude makes a difference in my experience.  When I think about my situation, whatever it may be at the time, how I think of it does tend to make things seem worse or a little better.  I have yet to think, "man, I wish this would all just go away" and *poof* all better, but thinking does impact my perception of things.  I'm sure for some of you it may be the same.

I had a dear friend, Frankie, who also had Spina Bifida that I would talk to a lot about different things.  We would encourage each other, be each others sounding board, make each other laugh, and share our mutual love for The Lord.  I talk about him in past tense because he went home to God in February 2009.  I remember a conversation  we had late one night in 2006.  He lived in Missouri, we never met face-to-face, so we would talk all the time through instant messaging and on the telephone.  At the time of this conversation I was going through what seemed to be never ending medical problems (as was he) and was in and out of the hospital a lot with kidney stones, pressure sores, and I even had a urostomy, and just about a year later, a colostomy.  Well, one day we were talking and he asked me how is it possible that I am still so strong with all that was going on and how could I keep such a positive attitude about things?  I simply told him that I wasn't strong, but with God's help, I could be strong and my faith in him gave me the strength to keep plugging along with the knowledge that, no matter how lonely I felt, I was not alone.  So there you have it.  That is my secret to having a positive attitude about my life: I have The Lord to help me every step of the way.

However, keeping myself happy and positive, instead of dwelling on negatives of my situation (whatever it may be at the time) has taken active work on my part too.  Of course, knowing I have that relationship with God goes a long way in helping me cope, I can go to him with all my troubles and know that he understands, I do have to do things so as not to let my mind dwell into dark territory.  I focus on things that make me happy and keep me occupied.  For one, I'm in college.  I got to Kaplan University. While Kaplan is an actual on site university in Davenport, Iowa; I attend it online.  With my disability, it can be rather difficult to get out and attend onsite classes as necessary, though I did do that for a little while at the Center for Biblical Studies and I really enjoyed it.  CBS worked with me so very much to help me further my education, despite the challenges that I faced.  As a matter-of-fact, it was through my education there that I decided what direction I wanted to take my education (and ultimate career) when I entered Kaplan.  Since I'm waiting until the September term to return to classes when my medical situation stabilizes a bit, I am doing other things to keep my spirits up.

I pray and meditate a lot.  I like to crochet, and write.  I also like to do other various things with Photoshop.  My user pic on here is one of those things.  My cat makes me happy.  She's a little black cat named Sunshine.  She's very loving and playful, but also skittish and at times is scared of her own shadow. And my family and friends make me happy too.  My mom was just here a couple minutes ago, and seeing her is always great, but today is her birthday so it was especially nice to see her and give her a birthday hug.  Listening to music makes me happy too.  I listen to a lot of different genres and artists.  Some of my favorites are: Kelly Clarkson, Carrie Underwood, Katy Perry, Lit, and Seether.  Another thing that makes me happy is penguins. That's where my user name comes from.  They just look happy, and that never fails to make me smile.  Yes, one of my favorite movies is 'Happy Feet'.

Alright, I better get going.  It's time for a late night snack! lol  Take care of yourselves and I will talk to y'all again soon!

xoxoxo
Erin

Greetings!

Hi guys! 


My name is Erin.  I am 28 years old and live in the Florida Panhandle.  This is a blog about me.  What I think of things, my feelings, fears, hopes, and dreams.  I'll even sprinkle in some factual information so that you know where all this comes from. Let me start with some basics.  As I said, I'm 28 and live in Florida.  I was born it with a disability called Spina Bifida (also referred to simply as SB many of us afflicted with it).  The specific kind I have is called myelomeningocele. My lesion extends from my sacral spine all the way up to the 12th thoracic vertebrae. 


I have found that often times, people do not understand what Spina Bifida actually is; so I will explain it to you so you can at least have a basic understanding of the disability.  Spina Bifida is the most common permanently disabling birth defect in the United States.  It occurs when the spinal column of the baby doesn't close during those first crucial weeks of pregnancy.  How Spina Bifida effects someone is as individual as the person themselves.  


There are different three different types of Spina Bifida: Occulta, Meningocele, and Myelomeningocele.  


1) Spina Bifida Occulta is often called hidden Spina Bifida.  The nerves are usually normal and 
there is no opening on the back.  Of the three types, Occulta is considered to be relatively harmless due to the lack of overwhelming and obvious symptoms at birth.  A baby born with this type of SB has a small gap or defect in the vertebrae that make up the spine.  Neurological deterioration progresses so subtly that it often does not become evident until later in childhood or even into adulthood.  However, in many instances, this type of Spina Bifida is so mild that there are no problems with spinal functioning.  It is for this reason that SB Occulta can be diagnosed at any age or not at all. 


2) Meningocele happens when the protective coatings (meninges) come through the open part of the spine, like a sac.  The closest thing I can acquaint this to at the moment is the amniotic sac that surrounds the baby during pregnancy. Sometimes you hear on television them talking about the mother having a bulging bag of waters- the meninges coming through the opening in the spine is kind of like that.  In this sac is cerebrospinal fluid, and there is usually no nerve damage to the spinal cord though babies born with this type of SB may suffer minor disabilities and additional problems may develop later in life.


3) Myelomeningocele happens when not only the meninges, but also the nerves of the spinal cord comes through the opening in the spine.  This type of SB is by far the most serious type.  Though people affected with the other types certainly have their own difficulties, when the nerves of the spine are damaged, this can cause paralysis of the lower limbs.  Other problems can include: bowel and/or bladder incontinence, pressure sores (aka decubitus ulcers or bed sores), hydrocephalus  due to the build up of spinal fluid on the brain, which requires a shunt to be implanted and, shoulder/neck problems from using a manual wheelchair or other mobility aid to get around.  These are just a few of the notable problems that this type of Spina Bifida comes with.  


Through the course of this blog, I'll tell you more about these issues, how the affect me specifically, and how I am overcoming them. I will also include links to websites that I find helpful.  I know this is very short and I haven't told you much about me personally, but I will in my next post.


Take care of yourselves and I will talk to y'all soon! 


xoxoxo
Erin