A little about me!

Well, I've noticed that everyone has started blogging so I thought I might jump on the blogging train as kind of a way to keep everyone updated as to what I'm doing (because my life is just sooo interesting! ha) But, I thought it might kind of be a cool way to keep everyone informed on all the changes and things that I've had going on in the last year, because in all honesty, this year has probably been the hardest year of my short 25 years of life.

Well, if your reading this, then you probably already know about me but there's alot that's been happening to me latley and I think this may be a good way to keep people informed and also answer any questions that people may have.

Well..to start of with, many of you know that I have been pretty sick this year. Well, technically for the last 2 years, but it all came to a roaring head this summer when I was hospitalized in the Cardiac Care Unit in McLeods for 2 weeks.  I'd been sick for months and months with chronic bonchitis and sinus infection after sinus infection for literally over a year and I stayed at the doctors office several times a month.  After seeing my family doctor half a dozen times, I was refered to an Allergy, Asthma, & Sinus doctor who I saw for about another 6 months.  They did allergy tests, which all came back negative, confirmed that I do infact have Asthma and chornic sinusitus.  He then referrred me to an Ear Nose and Throat Dr who decided that I needed sinus surgery to help try and alleviate the problems.  Sooo..last December I went through the painful, PAINFUL, sinus surgery.  It helped, for about 2 months, and then I was right back in the doctors office with the same symptoms, and still feeling horrible.  No one knew what was wrong, so it was back to anti-biotics and prednisone for me.  I continued to battle with the sick feeling until the end of the school year when i started having sharp pains in my left arm.  I kept asking my mom what she thought it was but she wasn't sure and she said it should be okay.  After about 2 weeks of constant pain and agony, I finally decided I would go to the doctor.  Little did I know what I was in for that day.

The morning I was suppose to go to the doctor, I had been up the night before throwing up and having a horrific pain in my chest.  It was so bad, my mom had to come home from work to take me to the doctor because I physically couldn't even sit up, my dad literally had to pick me up out of the bed and I was at the point of tears and hurled over the entire time I was at the doctors office.  Finally the doctor came in, I told him everything that was wrong and he thought that maybe I should be admitted for observation overnight because of the tenderness in my abdomen and the pain in my arm. Well..I was admitted to Carolina Pines and was ordered CT Scans and a MRI.  It wasn't 15 minutes that I had been back into my room when the Dr called with the results of my tests.  I literally broke down in tears as he began talking and I tried to speak but nothing would come out.  So my mom took the phone and I could hear the concern and tremble in her voice as she was talking with the dr.  He informed me that I had what was called a pericardial effusion (fluid around my heart) and spots on both of my lungs.  He said that I needed to be immediatley transferred to McLeod and that he had already spoken with the cardiologist there and that they were expecting me, and would be waiting as soon as I arrived.  In a matter of literally 5 minutes my entire life seemed to change.  I had no idea what any of this meant except that I was rushed into an ambulance and rolled into McLeod before I even knew what was going on. Scary?..absolutley..

The cardiologist came in and they immediatley started hooking me up to machine after machine and all I could do was watch and literally just cry because I was still in shock as I had no idea what any of this meant, and my parents were still trying to figure out what exactly was going on as well.  SO.. I spent 2 weeks in the hospital having test after test after test done to the point I felt like a lab rat because I had been poked and proded so many times, yet no one could tell us what was wrong or what we could do to fix the problems. Alot of my stay in the hospital is still a blur due to all the drugs and medication I was on.  Although I do remember all my family and friends that would come by and see me each and everyday and just sit with me to keep me company.  I'd never been in a hospital before so I was very thankful that I had someone with me at the hospital literally the entire time I was there those 2 weeks. After days and days of monitoring my heart and even being on the operation table getting prepped for surgery-then the thoracic surgeon deciding at the last minute he didn't feel comfortable performing the heart tap(are you kidding me..is he serious right now? Not only was I even more concerned now, but Debbie-my mom was all but beside herself.  Those of you that know my mom know that isn't necessarily a good thing!) Finally, I ended up having to have surgery on my heart and a biopsy on my lungs to remove the fluid (500 mL of fluid!) and test the spots to see if they were cancer, luckily they werent!

Finally..to make a long story short, the doctors finally figured out what was wrong, with the help of the Cleveland Clinic in Ohio, that I have a very rare and uncommon auto-immune disease known as Churg-Strauss Syndrome.  Great! They have a diagnosis-but what exactly is CSS? None of us knew.  Apparently it's a vasculitous disease that causes your body to fight against itself.  No one at McLeod had ever seen a patient with this disease, let alone treat a patient for it.  However, Dr. Turner (my AMAZING rhumatologist) was being guided by a specialist in Cleveland who HAS treated patients with this disease.  It's not contagious, they have no idea how I got it, or where it came from, it's not gentic, and the chances of getting it are literally 1 in a million, so how did I get so lucky?!

Now that we have a diagnosis, the next question obviously is how do we fix it? Well, we can treat the symptoms and put the disease in remission, but I'll have it the rest of my life.  In order to control the disease and put it into remission, I have underwent 6 months of treatment sessions at the chemotherapy center in Florence. I was the youngest person at the place recieving teatment by about 30 years-not exactly something I looked forward to, or an exciting place to be :(.  Each month for 3 days I would go, be hooked up to an IV and sit for hours while they pumped medicines into my body in HOPES that it would help to control this monster.  It's now November and I finished up my last round of treatments 2 weeks ago.  Hopefully it will be for good.  Dr. Turner says that unless I have a flare up, hopefully I won't have to do anymore treatments anytime soon.  However, I still have to take my weekly injection of methotrexate (which is a chemo drug) that helps to keep the disease at bay.  I have a follow up appointment the beginning of December where I will have more blood work and test done to see if everything checks out okay, hopefully it will, because I desperatley am looking forward to some good news after everything that has happened in the last 7 months.

To be honest, this whole ordeal has really changed my entire perspective on life.  My life literally has changed overnight and I'm still learning how to live with CSS.  Not only has it effected my body physically, but mentally and emotionally its been a rollercoaster ride for me.  I have my good days and my bad days and at first I had lots of questions as to why me, what did I do to deserve this, and just accepting the fact that I have a condition that I'll never be able to get rid of completley.  But after a while, lots of research, talks with my Dr and parents, and many prayers to God, I have realized that everything happens for a reason and even though I don't know why this has all happened to me, there is some reason God has put this before me, and who am I to question Him? So for now, all I can do is what the doctors tell me, and pray to God to give me the strength to make it through all of this with a positive attitude and accept that He is in control, because I know that He never gives us more than we can handle and apparently this is an obstacle that is suppose to be in my path.  Don't get me wrong though, there has been many many times where I've just cried and wondered, "what's next" because I simply don't know, but I just keep on with my day to day and I'm trying to do things to keep me occupied and busy so I don't worry about CSS.

Through this whole process I'm so thankful for all the love and support that I've received from family and friends, especially for them just listening to me when I needed someone to talk to, or going with me to my treatment sessions.  I know I wouldn't be able to handle all of this on my own, so without them, I don't know what I would do!  And my poor parents-they have seen me at my absolute worst due to all the steroids that I'm on, yet they still are there for me every single day.  I can't tell you how many times I've just sat and cried to my mom and she's teared up several times too, but it helps to know that I can talk to her and my dad whenever i'm having one of my down days.  They've been so supportive and my sister as well.  When I first started with the treatments, they said there was a chance I could loose my hair-which really really worried me, so my sister decided she would let hers grow out long in the chance that I would loose my hair and need it, she would cut hers and donate it, just for me. How sweet is that?

Now, I've been spending my days working up at the Haven with Harmony, Kristin, Danielle, and Amber and I'm really enjoying it.  It gives me a chance to get out the house and actually do something until I can get back to teaching and the girls are so nice to me!  With my immune system being so weak right now, the Drs don't want me to be around lots of children so teaching obviously wouldn't be something that I can do right now.  I'm suppose to go see a specialist in Cleveland hopefully the first of the year at the Cleveland Clinic who will hopefully give me some more answes to my many questions.  I'm excited to see him and hear what he has to say, but at the same time I'm a little apprehensive because I'm not sure exactly what he will tell me.  All I can do though is pray that everything works out the way that it is suppose to.

If your interested in learning more about CSS, here is a link sponsored by the Cleveland Clinic that gives you lots of information about it.
http://my.clevelandclinic.org/disorders/Vasculitis_Churg_Strauss/hic_Churg-Strauss_Syndrome.aspx

Wow..I feel like I have just summed up the last 6 months in just 1 blog post! I'll try to keep everyone updated as often as possible, but that's all for now!

Sutton