Wednesday, May 7, 2014

#Spoonie

When I first started doing my own Lyme research, I looked to other people's blogs for advice and information.  One thing I have noticed about all of these people is that they all refer to themselves as "spoonies". 

A Spoonie refers to someone who is living with a chronic illness.  This term comes from the Spoon theory written by Christine Miserandino.  At first when I saw this term I thought it looked silly for someone to compare themselves to a kitchen utensil.  After reading the spoon theory, I felt that I was finally seeing my everyday feelings put into words.  In effort to explain to her friend what it is like to live with a chronic illness, she laid out a few spoons on the table.  She explained to her friend that as she is healthy, she has an unlimited amount of "spoons" to work with each day.  Of course, with each daily activity a "spoon" is taken away.  For those of use living with a chronic illness, those "spoons" are limited.  And as each daily activity takes away one of our "spoons" we have to pick and choose what we are going to be able to do that day.  

This story really describes how my last year of college has been.  While most of my friends were going out and being social at night and on the weekends, I had used my "spoons" on going to class and doing homework.  By the afternoon, I was so worn our that going out was not really an option for me.  I also had to plan a head for the events I really did not want to miss out on, which required me to spend the day before resting.  Needless to say, I have become an expert at time management.  I have really struggled with trying to explain my situation to my close friends and feel that this story will be a great eye-opening tool for others!  

You can read the spoon theory here!

Friday, May 2, 2014

Reflecting: Plans after college

I still have not accepted that fact that in just 8 short days, I will be graduating.  As many hard times I went through with my health, I’m really going to miss this place. These past two weeks all I have been able to think about is that these are some of the last times, I am going to walk on this beautiful campus, attend some of these sorority events, live in this tiny apartment, and be so close to my sorority sisters and friends. 

One of the hardest things for me to grasp is that this is the last time I will ever live in a place like this. Never again will I live in a place where I am  in walking distance of all of my closest friends.  All the things are really starting to hit me.  I won’t be able to just  stop by one of my friends houses or run into my sisters and friends just walking to class.  Cleaning out my room has been so hard and not just because I have so much stuff, but because I have lived here for two years now.  The walls of this tiny bedroom have become a vision I will never forget.  With the amount of time I have spent in this bed, staring at the same walls, I could probably tell you every mark and imperfection on each wall.  Although I will not miss looking at the same view, it has become something very monumental to me. Not to mention that I cannot help, but think that these are some of the last times that I will walk around this beautiful campus that I have completely fell in love with. 

 Last Sunday my sorority had senior send offs as one of the events to say goodbye to all the seniors.  While I was sitting there listening to the letters written by the parents of the graduating seniors and other sisters, it really hit me.... this is one of the last times I will be in one location with all these amazing girls in one single location. I couldn't help but to look around at all my sisters thinking where everyone will end up after college and whether or not we will keep in touch.  As I looked around at all of my sisters in there letters, I flashed back to all of the amazing women that have shared these exact letters in the past four years.  I am so blessed to have found such a wonderful group of girls who have become my family and support system while I was at college. I have learned so much from this organization, and had so many amazing memories with these girls that it is so hard for me to let go.    

Now here I am 8 days away from graduating, and taking it all in. In this past year I have grown so much and become so much stronger.  I have learned how to be a fighter and I have made progress with my treatment. I have accomplished so many things and now it is time for me to start my next chapter.   For most college grads, the last semester is spent applying to grad school or jobs, so their post graduate plans will already be set into place.  Ever since my freshman  year, this has been my plan as well.   Instead of finding a job that will lead to my future career path, I plan on moving back at home and working part time.   For right now, I am just going to focus on my health and complete my treatment before heading out into the real world.  I am dying to get out there, and find a job to use the degree that I have fought and worked so hard for, but I am still in no shape to do that right now.  Although I am going to be so down when I leave this place, I will be so close to my family who are my biggest support system. 


It has been so hard for me to think about letting go of the place that I have lived in the past four years, saying goodbye to my close friends, and starting a new chapter.  I can truly say that I left a part of my heart here.  

Buyer beware: doctors promoting products

Before I started seeing the doctor I am currently seeing, I went to a well- known practice close to my house. Long story short: I quickly began to realize that this doctor spent more time telling me certain products that I needed to buy, than listening to my current symptoms.

Buyer beware: these products are reallyyyy expensive!! Now, I'm not referring to your doctor telling you that you should be taking certain supplements you can get from the vitamin store.  I am talking about your doctor telling you specific brand named products from specific companies.  Of course, wanting to get better I though that I really needed to buy these things.  I really started to catch on the day that my doctor told me I needed to leave because she was running late, while we were discussing a perscripotion of meyotlated folate I needed to take.  she told me this was the only company I would be able to order this medicine from.  As soon as I got home, they called me trying to sell me their producut, and let me tell you it was so expensive! To top it off, I recently found the same medication by a different brand at a much much lower price.

As most Lyme specialists don't work through insurance for legal limitations, you usually have to pay out of pocket.  My mom was paying soo much money for me and her to go in there and leave feeling like she did not even give us the time of day.  I know that there is not a big variety of specialists out there, but you should beware that your doctor truely has your best interest at heart.