Haunted

You guys, today I want to talk about something that is very scary for me. Last year I started to get really sick and it haunts me every day.

I remember when it first happened, but I am not sure what month. Maybe around October 2012 I woke up with blurry vision. My right eye was bothering me-it was as if I had just opened my eyes for the day and I couldn't quite focus properly. That night it still had not gone away and I decided to make a doctor appointment. A sudden change in vision is one of the symptoms that you need to report immediately. I was sent to an optometrist to get the issue looked at. After some testing they noticed my field of vision was decreased significantly in my right eye compared to my left eye. They wrote me an additional referral to a neurologist. I had an inflammation in my optic nerve known as optic neuritis. This vision loss was accompanied by severe migraines and lasted for about 2 months. Typically it subsides within a few weeks. 

This was just the first sign that my health was going downhill fast. I had been battling fatigue in relation to my hypoglycemia but it seemed to get worse. The fact that I could not sleep no matter how hard I tried probably wasn't helping. I took 2 sleeping pills every single night just to get 6 hours of sleep before work. I noticed aches and shooting pains all over my body. Little by little it got to the point where my whole body hurt almost all of the time. I was tired, I had headaches, and I was miserable. 

I was in and out of the doctor non-stop. I had MRIs, CAT scans, and so many blood tests. Every day seemed to come with a new symptom and I was so damn tired of feeling this way. I tried not to complain but I know I was whining my husband to death. When I got off work, all I wanted to do was take some sleep medicine and go to sleep because that was the only way to stop hurting. My doctors all kept saying multiple sclerosis and it chilled me to the bone. 

All I could think about was that I was too young. I am too good and too ambitious and too happy to get this sick. I'm not ready to be diagnosed. I'm not ready to watch myself decline until I am dependent on a wheelchair. I am not ready to hear those words that feel like a death sentence. I'm just not ready. 

With a lot of determination and luck, we made it up to Rammstein about a week or two before we PCS'd from Germany. I needed to be evaluated. They had to check my breathing because I had been short of breath with a rapid heartbeat for weeks at that point. They had to do another MRI and they had to do a spinal tap. I don't have words for the terror that filled me when I went in for the procedure. All I could think about was the chance that they did it wrong and I became paralyzed. I knew it was going to be painful and I was so scared I thought I would cry. I took a deep breath and they numbed me, and it burned. It burned, it burned, it burned, and the needle wasn't even in my spine yet. I took a very shaky breath and the needle went in. There was so much pressure. He had to wiggle it and still, it was wrong. He would have to try. There was nothing more I wanted to do then give up and walk away, but I knew I had to stay, so I did. The second time was a success and they showed me my cerebral fluid afterwards. My back still hurt pretty bad but I felt really strong laying on that table after they were done. 

The crappy part really starts here. My episode lasted from about October 2012 to March 2013. Five months of the most absurd collection of symptoms I had ever experienced, and they all stopped without warning. All of my medical records were sent to me and I never received a verbal explanation of my test results. I could tell that the records showed abnormalities. There were red flags on the page but I have no idea what any of it means. 

Now I have no health care. I cannot afford a $750 a month plan, so I go without. I have a huge stack of papers that suggests I might be int he very early stages of a very scary disease, but no solid diagnosis. The DSM-IV states that a patient must experience at least 2 episodes, at least 6 months apart, for a real diagnosis. This is a disease that goes into remittance and comes back without warning. This stays with you forever and only gets worse with age. There are few drugs out there and most of the healing is done through therapy. 

So now I wait. I focus on my vision and assess it for changes. I take note of every shooting pain, every muscle twitch, every migraine. I try to eat well and go to the gym in hopes that I can somehow combat it. Maybe if I love myself enough, maybe if I do everything my body needs, then it can get better. Maybe I will never ever have to hear someone diagnose me. Maybe I can get lucky. But in the back of my mind, I have this aching feeling. I know the tests for every similar illness and disease came up negative. I know my mother has fibromyalgia which puts me at an increased likelihood of having a similar nerve-related issue. 

I think the reason I am searching so hard for my "purpose" in the World, is because I have this nagging me. I feel like I have had to face the very real possibility that in a few months I could be very sick again. In a few years I could be physically disabled. What if I don't go out and do something tremendous right now? What if I stay in my acceptable job with my acceptable rental home until it is too late to chase my dreams? I don't want to know the answers. I want to go out there and chase my white whale while I can. I want to make sure I am really fulfilled before this starts taking away from me again.

And you know what? When this disease comes for me again, I'm going to fight it. If it tries to say I can't do something, you be your ass I am going to try. People come back from illnesses all the time. People make the best of their lives even with cystic fibrosis or missing limbs or cancer. Count my words; I will not lose my spirit to some disease.