This is one of those posts that has been sitting in my 'Drafts' section far a while and I have tried to write so many times. Back in the beginning of January I did post on looking ahead for 2014, more specifically what I want to do here in 2014. If you read it you this you might remember that I said I wanted to get a little more personal here with all of you. I explained that I was a really private person and that I am working on being more open. Today I am going to share with you something that aside from briefly discussing here, I have never talked about on this blog before, and might never talk about on this blog again. The reason I probably won't talk about it on here again is because it doesn't have anything to do with what I do here, and this is my space to escape from it. However, I am going to share it because it is a large part of my life and is something that I accepted a long time ago that I cannot change. I am not looking for sympathy, pity, or anything of the sort, by any means, I am sharing this purely to be honest and let my readers in on my "real life." Additionally like I said in my post about leaving Greece, if sharing this can help just one person, or make just one person better understand what this is like, or even if it's just a good outlet for me to talk about everything then it is all worth it.
I am not healthy, I know this is a weird way to put this, but I hate saying "I'm sick." My health began to go south when I was 11 years old - 10 years ago this past November I came home from school one day with a terrible cough that would forever change my life. Weeks, countless tests, and doctors appointments later I was diagnosed with mycoplasma pneumonia, which had been causing horrible, horrible coughing for me (it was worse than any coughing I or the people in my life had ever seen before). Once I was cleared from the pneumonia I was left with terrible unexplainable chest pains. There was nothing wrong with my heart or lungs (I had a lot of tests to check both) and there was seemingly no reason for this pain.
Several months into this ordeal one of the numerous doctors I had gone to ordered a full body bone scan. A body scan is when you are administered a radioactive substance by IV, which takes a few hours to travel through your body; after the allotted amount of time is up your entire body is scanned with a special camera. This test shows bone issues that do not show up on a traditional X-ray. When I had this scan it was discovered that I had 2 fractures in my sternum. The crazy thing is what caused these fractures - the coughing from the pneumonia. After they questioned my parents and me to see if my parents were abusing me (which they were not), or if I had been in a car accident, fall or anything like that (which I had not), it was determined (and agreed on my all doctors) that the coughing caused me to fracture my sternum.
Because the fractures were caught late and there isn't really a way to 'cast' a sternum (and because it was something that was essentially unimaginable), the bone healed with nerve damage. After about a year and even more doctors I was diagnosed with something called Reflex Sympathetic Dystrophy (RSD, also known as Complex Regional Pain Syndrome, CRPS). RSD is kind of hard to explain, but this is the WebMD description:
"Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome[...] Frequently, RSDS may be misdiagnosed as a painful nerve injury. The skin over the affected area(s) may become swollen (edema) and inflamed. Affected skin may be extremely sensitive to touch and to hot or cold temperatures (cutaneous hypersensitivity). The affected limb(s) may perspire excessively and be warm to the touch (vasomotor instability). The exact cause of RSDS is not fully understood, although it may be associated with injury to the nerves, trauma, surgery, atherosclerotic cardiovascular disease, infection, orradiation therapy."
As mentioned RSD is rare; having RSD in the sternum is practically unheard of, if not totally unheard of (I have been to multiple doctors though who have confirmed that I have RSD though). I am in pain 24 hours a day, 7 days a week. The area that I have RSD is extremely sensitive to touch, and will sometimes change color. RSD is something that once you have it, it can spread to different areas of your body, and over the years I have developed pain in my left shoulder, both arms, my back, and most recently my left hip as a result.
Being in so much pain all the time leaves me exhausted. I never feel better, only worse; my pain is very affected by the weather, seasons, and the environment I am in. I miss a lot of school and everything (prom, dances, parties, dates, etc.) because all of this, sometimes I am in too much pain to even get out of bed. I was home instructed for most of middle school and high school (the school sent personal tutors to my house, because it was not my choice to do school at home). I even took a year off between high school and college because of this. There are very simple every day tasks that I cannot complete because it is too painful or too tiring for me.
There is no treatment for RSD. There various medications that one can try to help with nerve pain, but I have tried just about all of the (most likely I've actually tried all of them) and nothing has helped. I have also had countless allergic reactions to medications, which only makes coming up with a treatment plan more difficult. More recently I've even had a few surgical procedures to try to treat my RSD, but they have been unsuccessful as well.
In addition to having RSD, I was diagnosed with Crohn's Disease when I was 16. Crohn's is much more common and many people in my family actually have it. For anyone interested in the medical definition this is what WebMD has to say:
"Crohn's disease is a lifelong inflammatory bowel disease. Parts of the digestive systemget swollen and have deep sores called ulcers. Crohn's disease usually is found in the last part of the small intestine and the first part of the large intestine. But it can develop anywhere in the digestive tract[...]Doctors don't know what causes Crohn's disease. You may get it when the body's immune system has an abnormal response to normal bacteria in your intestine. Other kinds of bacteria and viruses may also play a role in causing the disease."
My difficulties with medication have extended to my Crohn's as well. Any of the pills that I have tried have not been able to keep my symptoms under control, so I have to use biologic medications. When I was in high school I did Remicade treatments, where I would go every few weeks for IV treatments. However after about a year of treatments they made me very sick so I had to stop them. I now get Humira every 10 days, which for the most part (it does still act up) keeps my Crohn's under control. The Crohn's wipes my immune system for the most part and at times makes me very tired.
Crohn's also depletes your body of it's nutrients because food is not properly absorbed, as a result of this it can make you anemic and weaken your bones. It is most likely because of the Crohn's that I've had weak bones my whole life and that is how I was able to crack my sternum by coughing. This explains how something so unimaginable was able to happen. As you can imagine the RSD coupled with Crohn's doesn't make for the best combination, but I muddle through.
I go to class when I can, I hang out with my friends when I can, I blog when I can, I do as much as I can to be as 'normal' as I can. For what I can't do I do get frustrated sometimes, especially when it holds me back from big things, but like I said above it's something that I accepted a long time ago and something that I cannot change. I'm not angry about, I just take everything one day at a time and am thankful that things are not worse, because they could be.
This is just a condensed version of everything because this has been going on for a while and as I'm sure you can imagine we'd be here forever if we got into all of it. This is just the basics, what I deal with on a day to day basis, and what I was alluding to in that other post. If anyone has any questions for me please feel free to ask!
Tomorrow we will be back to our regularly scheduled programming.