The pressure in my head is building. It's close to treatment time, which means the Botox from last time is starting to wear off and I'm slowly losing control over my neck and head. The pressure is so weird. It's not a headache-type pressure. This sounds crazy, but it feels like my brain is pulsing and the pulsing is shortly followed by mild contorting of my neck. Definitely time for treatment.
The most common form of treatment for Dystonia is Botox injections, which is what I have been doing for almost four years. Anywhere between 10-20 shots of Botox are injected directly into the muscles in my neck every 3 months. Yes, it hurts. I used to pass out when I first started the treatment. It's extremely unsettling to feel a needle digging into your muscles and feeling the Botox spread like a cancer through your neck. It is emotionally draining for me. I usually leave the hospital in tears and stay in bed for a few days after. The reality of Dystonia seems to always hit me after these treatments.
Sometimes the treatment works pretty good and sometimes it doesn't. That is what is so complicated about Dystonia. Everyone is different.
My neurologist is amazing. She diagnosed me, she knows how much I have improved, and she knows my needs for treatment better than anyone. I have so much faith in her. I have to. She is the only one who can help me. I depend on her to get the injections right so I can function as best as possible for the next 3 months of my life.
I need to bring something up. And this is tough for me because I adore my neurologist.
Even she is human. And something that happened last year during one of my treatments really showed me how powerless we all are in this. All we can control are our attitudes.
May 19th 2011.
I went to the hospital, UC Davis, in Sacramento for my routine 3 month Botox treatment. I was with my mom and my now ex boyfriend that day, who usually accompany me for these treatments. My ex would sit in front of me during the procedure to distract me from the pain and my mom always stands behind me to watch exactly what my neurologist is doing. This particular treatment went so incredibly wrong...
She was injecting the last needle, right above my left shoulder. Right after she took the needle out I felt a shooting pain all the way down my spine. I immediately told her something was wrong. She told me it might be a nerve that was pinched and advised that I lay down. Not even 2 minutes later, I was gasping for air. I felt like I was drowning on nothingness. The nurses immediately called for an ambulance and I was transported to the ER down the street to a different building. I think my neurologist was completely dumbfounded. She had no idea what was wrong. I was whisked away so fast by the EMT's I left my mom and my ex standing in the dust. I was taken to the emergency ICU room, which was absolute HELL.
There was only a curtain in the room separating me and another patient, a woman who had overdosed on drugs and was cussing and screaming at all the doctors. I didn't know where my mom was, and my breathing was not getting any better. The doctors took x-rays and I was given an IV, all that good stuff. Unfortunately for me, the nurse helping me was a fourth year med student and had rolled my vain when trying to get the IV in, splattering blood everywhere. Shortly after, the doctors came in and told me that my left lung had been punctured by the needle my neurologist injected and my lung was deflated 15%. They were going to keep me overnight and see if it would re-inflate on it's own, and if not, a chest tube would be inserted directly into my chest to re-inflate it. As if being in the hospital receiving treatment for an incurable disorder isn't bad enough, now I was injured because of malpractice. Apparently my lungs sit a little higher than usual because I'm so tiny, so I don't hold too much fault over my neurologist's head. How was she supposed to know? People think I'm crazy for continuing to see her for treatment but I just don't trust anyone else.
I needed the chest tube. I woke up the next morning and was almost gasping for air. The doctor came in and told me what was going to happen, but all I could focus on was the fact that I was going to be awake for the whole thing, he was going to stab with me a huge needle right in the chest to numb me, and then stick a tube with a pointy end directly into my chest, and my mom had not made it to the hospital yet. I called her in a complete panic. I needed her there. I was frantic. She flew down the highway and literally made it just in time.
To make matters worse, I was completely exposed. Breasts out, no cover-up or anything. I looked away and went to my happy place.
Heaven. No Dystonia. No more pain. No giant tube being inserted into my body. Nothing but God's grace and the knowledge that I would never have to go through this again. Unfortunately, this is the real world, and I was not in Heaven. I can't even explain the pain and I don't really want to. Bottom line, I should not have had to go through this.
I was a wreck.
To make matters worse, I really needed my now ex-boyfriend to be there for me and he chose to hang out with his buddies and drink instead. If the person I loved was in the hospital recovering from Botox treatment and had a punctured lung with a chest tube keeping me breathing, I would have freaking BEEN there.
He's an EX for a reason.
My mom was there. And that was enough. My mother's love for me is the biggest blessing God has given me so far. I could not do this without her. I know how lucky I am and I do not take that for granted.
I was in the hospital for 3 days. 3 days of no sleep. I was interrupted every two hours for 24 hours straight by x-ray technicians coming in to take x-rays and see the progress and make sure everything was okay. I was sharing a room with an elderly woman dying of Cancer. I couldn't walk by myself and had to have the support of a nurse to support my weight to help me take those first couple steps. The nurses were amazing. Bedside manner is everything. By the third day, the tube was ready to be taken out, and it was even more painful coming out then coming in. I don't even like thinking about it.
I was in such a funk for weeks after that. Life made no sense. I prayed endlessly but the tears wouldn't stop. Why did I have Dystonia? Why wasn't my boyfriend there for me? That hurt worse than the tube. A true testament to what love should or shouldn't look like. The company you keep is so vital in living with this disorder. It's not easy and I respect everyone in my life who has the heart and love to love ME through all of this. It's a lot of drama but I am so thankful and so blessed.
Here's a couple pictures from this fun experience. Sorry for those of you who don't like blood!
This was in the emergency ICU room with the crazy screaming lady right after they told me my lung was punctured. I was not a happy camper..
Fourth year med student ...way to splatter blood buddy. Thanks for that one.
This was after they took the tube out. I had this bandage on for a few days.
Cheesin :D or not?
Dystonia is such a complicated disorder. As this experience taught me. It's not just a pain in my neck, no pun intended. The human body and brain is not supposed to be put through this kind of stress. Especially long-term stress. It's scary. It taught me that doctors are not God. They are human. And they can and DO make mistakes. And not one day should be taken for granted because this situation could have turned out really bad for me. It was a learning experience.
We all make mistakes. Some people should not be welcomed into my life if they cannot even take a night off from drinking with the buds to be there by my side when I was terrified. And I am stronger than I give myself credit for. I survived that and I will survive this. And I will keep talking about this until my voice is heard. Something needs to be done! More mistakes will be made! It's a guarantee! So let's do something about that!
I am in the process of setting up a donation website for people to donate money for research to the Dystonia Medical Research Foundation with my personalized story on it. I'm praying to God that people respond and help me fight this awful disorder.
Unfortunately, my treatment appointment was pushed back a month, so I am in for a rough few weeks. More opportunities to learn tough lessons and find the blessings God graces me with throughout these difficult weeks. It makes me appreciate the healthy times all the better. It's all about attitude, right? Happy to be on this journey despite the pain and fear, and as always, thank you to those who take the time to read this. You guys are amazing!
"Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our Light, not our Darkness, that most frightens us."
Love is all about someone saying, 'I see you. I see who you are. I love who you are. I appreciate who you are.'