Life is About Change

Change. Some of us are good at handling it, others aren't. I myself have had to adapt to a lot of change within the past few years. 

I grew up in a small town in Colorado. Until a few years ago, it was all I knew. Then I got sick. 

When I was forced to move to California with my aunt and uncle due to my health (severe sudden altitude sickness), it was extremely overwhelming.

Thankfully, my health has improved and I have made a very healthy social environment for myself as well. However, that does not mean it was not very difficult to get to this point.

The various classes that we are currently taking are teaching us how to handle stressful situations such as this. In the healthcare industry, providers need to be able to quickly adapt to whatever the situation demands. Whether it be from a patient or coworker, an unexpected situation can arise at any time which can put everyone in an awkward position if not handled delicately. 

"You Don't Look Sick"

When you see someone in a wheelchair, struggling to get around, you can usually defer that they have some sort of serious medical problem. But what about those that have serious illnesses that are not so easy to detect? 

It might be more common than you think. I am sure you have seen someone park in the handicapped spot, then get out of their car looking completely normal. What you don't realize is that this person is struggling with a very severe condition that is not visible to the naked eye. 

I am one of these people. I have an invisible illness. 

It is not easy to get handicap licences. You do have to go through your doctor, have paperwork filled out with a list of your conditions, and then get it handled at the DMV. So why is there such an attitude toward us? I believe because most people just don't understand.
About 3 months ago I had yet another surgery (mentioned in my previous blog). I had 8 wires removed that were wrapped around my sternum, causing severe pain. I had to stay overnight in the hospital; however, the next morning I was free to go and rested at home.

3 days after my surgery

Since this was not my first time that I had had my chest cut in to, I knew when I was ready to start treating with coconut oil and scar cream. Already my scar is looking much better than the photo above. 

With everything going on this year, I finally went and get a handicapped license after struggling with it in my mind for over a year. It has been a blessing for the days when my pain is not manageable or I'm just exhausted. 

This is how I live my life; some days, I have more energy than others. It is like this for everyone with an invisible illness. Recently, I was told about The Spoon Theory by my nurse (who is also a cardiac patient). It is written by a lady with Lupus to help others explain to their family what it's like to live with an invisible illness. 

Since I have learned about The Spoon Theory it has changed my life and I am constantly informing others to read it as well. 

Sternal Wires and Listening

I believe one of the most important lessons we as health care providers need to learn is that patients are people too. They feel and experience things just as we do.

I say this because I have had multiple experiences where doctors don't listen to the patient because they are the doctor and believe they know more. Yes, doctors have gone through years of schooling and can be wise, but it is not wise to ignore what the patient says.
In my case, I suffered from chest pain for several years. When you have open heart surgery, they cut directly down the sternum and then wrap wires in a twist-tie like fashion back around your chest. This acts like a permanent cast while your sternum heals. However, the wires are not usually taken back out.

For years I felt these wires stabbing me and causing extreme discomfort. Until finally, I had an extreme pain that landed me in the ER. I had broken a sternal wire. However, my doctors did not believe that that was what was causing the pain, although I was having severe stabbing pain in the location that the wire was broken. I was patient with my doctors, and in the end they removed the broken wire, but the process took several months until they had done multiple tests and ended up with no real diagnosis. 

This year, less than a year from my previous surgery, I ended up having another issue with these wires and I again ended up in the clinic. I was so thankful that my doctors believed me and were patient with my explanation of the pain. I was rid of the wires a few weeks later and now I am completely pain free from the horrible stabbing as well as the chronic pain I had had for years!

Giving Back

  

Life can be easily put into perspective when you are constantly facing death. I was born with a heart condition called pulmonary atresia. In this condition, the pulmonary valve does not form correctly. In my case, my valve was closed. Multiple surgeries later, I was stuck with a flap of skin for a valve that did not allow the blood to flow correctly. 

As the years went on, the right side of my heart began to swell. At age 15, I became very exhausted with an average of 15 hours of sleep a day and could not function at all. 

I finally was taken to the emergency room where I stayed there for a week until they ruled that I needed to have open heart surgery.

Believe me when I say, waking up from open heart surgery feels as if you've been hit by a truck, then ran over, then backed up on. It is not a pleasant experience. And although this was my second one, I did not have many memories from the first one at two years of age.

After your body stabilizes and you are coherent enough, the doctors usually want you to try and get up and move around. I have to admit that I am very stubborn and like to prove to people that despite my disabilities, I can do whatever I put my mind to. I walked around the whole ICU and then my nurse helped me take a shower. Trust me when I say, there is nothing like taking a shower after any kind of surgery. 

This kind, angel of a nurse was so gentle and nice, and even brushed my hair out after my shower. I will never forget the kindness I received (even though it is in patches from all the medication). 

This is why I want to get into the healthcare field. To return the kindness that has been shown to me throughout all of my hospital visits, and to help others. I know first-hand the pain and suffering that many patients go through, and I want to be able to show that there are many individuals with compassion and understanding. When you are a sick patient, a simple smile can truly change your day.