Tuesday, June 11, 2013

So it begins...

In November of 2009 my life changed forever. It sounds dramatic but it's the truth.

November was a big month and looking back now it makes total sense why my illness chose to present itself when it did. The two biggest factors being my Dad having a 5-way heart bypass and me being fired from my job of two years on the day that I returned to work after his surgery. Even though everything went smoothly with his surgery it's still heart wrenching to see one of the people you love most in the world lying in a hospital bed with his chest cut open, and then to come home and lose the job that I loved.

Of course I was stressed out and concerned with what would come next but I've always been a firm believer that everything happens for a reason. I knew that things would start looking up soon so I tried to keep a positive outlook. Towards the end of the month, however, I was feeling exhausted so I laid down on the couch before dinner.

I was aware of what was going on around me but when my family called me to the table for dinner I couldn't move and I couldn't speak. My body wasn't working and I was terrified. I didn't know what was going on. Finally, my Mom came over to where I was laying to see why I wasn't responding and I burst into tears.

I regained the control of my body but it was such a scary and confusing moment for all of us. Obviously the moment was weird but we didn't think that much of it until the next day when my Mom and I went to the grocery store. The Earth literally began to shake, my vision changed, I couldn't hear, or speak coherently, and I was dizzy. It was all happening within my body and I couldn't understand or explain what was happening.

This event led to a trip to the doctor where all parties involved believed that I had had a stroke. This ignited the long process testing which included a plethora of blood tests and brain scans. Everything came back clear. I had no signs of stroke (although my family and I still believe I've had a TIA or two), no masses growing in my brain, and nothing in my blood that would prove to be bothersome.

Life started getting back to normal, somewhat, and I decided to take some time off from working and wait until I found something that I really wanted to do. The end of the year and beginning of the next flew by and I had not been feeling well so I was still visiting doctors and trying to figure out what was going on with my body with no answers being given along the way.

In February I found a job, which I was unable to do due to lack of energy. My body and my brain were just too exhausted so I had to quit the job after almost a month. At the same time I went and visited a neurologist. I was hopeful that he could tell me what was wrong with me and suggest a course of treatment that could get my life back on track.

He ended up not listening to a word I said. He had diagnosed me before I even walked into his examination room. He told me I had been experiencing Hemiplegic Migraines, which translates to "half-paralyzed migraines". This sort of made sense because I have gotten migraines since I was 17 and would also explain why I had been paralyzed in November. He put me on a few different medications and I was overjoyed because I thought I was on the road to recovery.

Turns out the medication he put me on made me sick. I went back and told him how it was making me ill and he increased the dose. That makes sense, right? He refused to answer my questions or offer any helpful advice. One thing I've learned in my life is that you have to be your own advocate when it comes to your health so I went back to my primary and told him I wanted to see a different neurologist.

I did my research and found a doctor in the next city over who was supposed to be amazing. Not only had he been practicing for years and years but he was also the head of the Neurology department at the Oregon Health and Science University in Portland. He had to be smart, right? And since he specializes in children's neurology I figured he had to be kind as well, which is really important in my book.

He turned out to be such a spectacular doctor. He ran many tests and while he originally thought I had MS or a brain tumor he luckily didn't find anything out of the norm. He did something at our last meeting though that changed everything for me. He looked me in the eye and said, "I want you to know that I believe you. I believe that you're sick and something is wrong with you. You're a 23 year old girl with better things to do than be sick." In a story filled with doctors who didn't believe me, his words made me feel so much better.

I forgot to mention that throughout this entire process I am gradually feeling worse and worse. I just didn't feel well. I couldn't speak normally. I couldn't form sentences or come up with proper words to describe things. My entire body hurt, inside and out. I was tired all of the time. I used to be smart, but I felt that I was just getting dumber and dumber. I also smelled things that weren't there, tasted things that I wasn't eating, and had strange phantom feelings. All of my senses were wrong. It was awful.

After everything came out fine in the neurology department I went back to my primary. He looked me in the eye and told me that nothing was wrong with me and that he thought I should seek psychological help. That moment was the most devastating thing to happen to me in my entire life. I was mortified, and made to feel small and stupid. I held my act together while in his office but burst into hysterical tears once my Mom and I hit the parking lot. I still get emotional when I think about it and I hope that none of you are ever made to feel like that, because no one deserves to be treated that way.

I went home and immediately began the search for a new primary. I refused to return to the doctor who made me feel bad about myself. I found an amazing woman who wasn't actually a doctor, but a Nurse Practitioner. She listened to, and heard, every word that I said and ended up fighting to get me into the best Rehumatologist's office in Oregon because she believed that I had Fibromyalgia or Chronic Fatigue.

I ended up getting approved to become a patient of his and have been seeing him ever since. He's an incredible doctor who has written a book on Fibromyalgia, gives speeches on the topic, and actually has the illness himself. He ended up diagnosing me on my second trip to see him. Finally, after all this time, I had the answer. He believed me and he wanted to help me. The answer, Lupus and Fibromyalgia.

He's been treating me for almost a year now and I'm on 7 or 8 medications. I'm not better but the medicine is helping a little. My doctor has told me that the reality is I will never be completely better but I think I can say I'm at least 30% better than I was before the meds. I have bad days and good days, but most days are just okay. I hurt and I feel drained all of the time but I'm thankful to be alive.

It's hard having an invisible illness. When people find out I'm sick they often say things like "but you don't look sick" or "why don't you just take a nap if you're so exhausted?" I often feel like people judge me and I know that other people with chronic illnesses do as well. In this blog I'm going to share stories about my journey with chronic illness and I hope you can learn something from it or just feel better about your own experiences.

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