Wednesday, February 15, 2012

My life and chronic sinus disease

For those of you who don't know, I suffer from chronic sinus disease. I have had four surgeries on my sinuses, the third and fourth being in 2009. I was 12 when the first symptoms of my chronic cranial pain began. I have been dealing with this disease for 14 years and of those the first 8 went undiagnosed. Those beginning years were filled with doctors medicating the symptoms instead of trying to come up with an explanation as to what the centralized problem was for causing the chronic pain. Cranial pain meaning pain in my neck, head, jaw, sinuses, ears, and around my eyes.

This disease has consumed much of my life and has changed the way I go about living each day. To say I have suffered such an immense amount of pain is an understatement. This post is not about me complaining or looking for sympathy. But more about the ways in which I have had to learn to cope with pain and learn to live my life differently to account for my health issues.

People have asked me what does it feel like and the best description I can give is to compare it to the worst sinus infection you have ever had... but experiencing this every day. To be able to get out of bed and function day-to-day I have to go through a health regiment every morning and night. It is best to start with the evening, for if I fail to do the necessary pre-bed requirements I will not be getting out of bed at all the next day.

1. I must do two sinus rinses, one through each nostril. The rinse is made up of distilled water  and a saline packet which is then slightly heated.
2. I take two tablets. One that helps prevent polyps from growing in my nose and sinuses. The second is a skeletal muscle relaxer. This tablet is important. It allows me to relax my whole body enough to fall asleep. What people don't understand is that when one is suffering from chronic pain (the pain is constant, never ending), the body does not stop feeling pain when you are asleep. Individuals with chronic pain of any description often suffer from sleeping disorders. I was diagnosed with a sleeping disorder at the age of 15. Also important to note, this tablet allows my body to get some relief from pain while asleep. Basically giving my body a break to help me better cope with pain the following day.
3. After completing my sinus rinse I must lay on my bed with my head dangling over the edge while I directly drop a liquid steroid into each nostril. After doing so I must lie there between 5-10 minutes, which I would have to say is the hardest part of my health care regiment. Not only is it boring but by this point I am exhausted and just want to get into bed.

1. If all done the night before the morning is much simpler. I do two sinus rinses again, following the same directions as the evening. Depending on how my sinuses are doing I may have to repeat this again later in the day around noon.

Embarrassing fact. Not all the water will leave my nose and sinus cavities. So there have been times when my nose will spontaneously start rapidly dripping water out of it. Most often this happens when I bend down to get something out of a low cupboard or to pick something up. I try to keep this in mind when in public.

What I have learned so far while living with this disease:

1. I have learned who my true friends are. They are individuals who do not blame me for being sick and can look past all the really bad days to make the best out of the good days.
2. If you smile really big people will think that everything is ok.
3. The human body and mind can be pushed to its limits and you can still survive it.
4. Most importantly that life can be beautiful and worth living!

Some people think because they cannot see a visible disability or injury, such as a broken arm or leg, that I am not suffering in pain or that it couldn't possibly be that bad. But in reality it is that bad! Individuals suffer and deal with chronic pain in many different ways. This is why I wanted to write this post. Someone close to you maybe be suffering in silence. It could be that girl who is always smiling, the girl who constantly refuses to go out to the bar, or the girl who frustrates you because she says she is always tired and never seems up for doing anything fun... That girl is me. I would love to be able to do the things that healthy young people do. I hate having to always sit on the sidelines of life while others are participating. To be completely frank, I am tired of having to constantly explain to people I don't know that I have health issues and this is why I can't do certain things.. and most of all I don't want to feel bad about my situation anymore and just move on. My chronic pain is apart of me but it does not define who I am. Today I am saying goodbye to the "sick girl" and hello to my new life of acceptance and possibility.

This post is dedicated to my Mom who has wiped away countless tears and to Mark Shields who saved my life by showing me how to live it.