Wow, what a week this has been. It’s always funny to me how life never fails to let you get comfortable and then pull the rug from underneath you. Just when I thought I had reached a good place and gotten my disease under control (to my best ability) I find myself in an ambulance being rushed to the hospital. It was a rough situation and one that looks like it will be putting me through quite a roller coaster for the next few months.
Two Friday’s ago I was in bed and heard some rustling. It was my husband getting ready for work. I usually drop my daughter off at school on Fridays, so he will be up before me getting ready while I sleep in a bit since she does not have to be at school until 7:30. Most mornings I have to be at work by 6:30 and it is a 45 minute to 1 hr drive so I am up at 5AM. I really love the days I drop her off at school! haha. Anyways, I could tell then something was not right but I figured it was just some exhaustion and I would go back to sleep until my alarm went off. The dread of the cell phone alarm went off and before I even opened my eyes I could feel an insane room spinning dizziness and rush of pressure to my head. That feeling you have when you have had way to much to drink and can’t stop the room from spinning even when you close your eyes… it was happening but without any induction of alcohol. I opened my eyes hoping it would be fine, and it wasn’t. Everything was spinning out of control and making me feel incredibly sick. I called my husband in the room “you’ll need to take Bella to school, I can’t drive”. While he went to get her ready I struggled to find a position that might make the dizziness improve. Often times if this happens I am able to sit up and lean forward with my head down and it will take some of it away but not all. Nothing was working today. I tried lying on my sides, my stomach, I knew I couldn’t lie on my back (I have been having issues with the back of my head for months now). I have had pain in the back of my head, nausea, dizziness, trouble riding in cars as a passenger and more. This was the worst I had experienced and I needed to get my hands on my anti nausea meds fast. I slowly got up (not thinking “duh! I should be holding something”) and immediately fell over onto the bedside table knocking my pill bottles and water cup everywhere. My husband ran in and helped me to the bathroom and then to get my meds while my daughter got a towel to help clean up my mess. I hate these mornings. The mornings where I am so helpless and cannot do anything for myself. The mornings where my daughter has to see me like this, and take care of me when I should be the one taking care of her. I just hate them so much. I know my family loves me, and will do anything to take care of me, but these moments make me feel truly disabled, and humiliated and frustrated. I hate not doing for myself and as always I try to keep going which ends up coming back to bite me in the ass. When will I learn?
Once I was settled back into bed with my laptop because I was under the delusion I would still be able to work, my husband and daughter left and I assured them I was fine on my own; I would just stay in bed. About half an hour after, I was not fine. I was unable to grab things. I reached for my mouse and it was not where I saw it to be. I was having issues with perception of objects. I started to panic a bit and felt like I couldn’t think straight. I found my doctors number to call after quite a bit of struggle getting into my phone and locating her name and called her office. I explained to them what was happening and her office instructed me to get to a hospital immediately. I couldn’t think of who was available and remembered my friend in the neighborhood who is a stay home mom (thank goodness!). I had issues talking to the doctor when I called so I texted instead and asked if she was home and could take me to the hospital. I was getting more frantic which probably didn’t help. I remember grabbing my purse and crawling to the front door because I knew if I walked this would end badly. I made it to the driveway and sat there. Spinning, confused, nauseated and totally freaking out.
Luck was on my side that day. It wasn’t long after that a police officer was patrolling our neighborhood because there had been some robberies around the area over the last few months. He saw me sitting there and obviously could tell I was out of sorts. He stopped his car, got out and walked towards me. It wasn’t until this interaction I realized I was having a hard time looking at people. I am guessing because of the spinning. “Ma’am, are you ok?” he said. “No, I can’t stop spinning, my head is killing me, I need to get to the hospital, someone is coming for me”. He explained we shouldn’t wait and I agreed. He called an ambulance to get me to the hospital which would allow me to be treated more quickly as well. He sat with me and talked me through everything and helped to calm me down. My friend arrived shortly after and sat with us as well. She would escort me to the hospital behind the ambulance. The officer was incredibly nice, comforting and helpful. He stayed by my side all the way until they loaded me into the ambulance. I am so grateful for his care and for his incredible timing. I was strapped into the gernie and hauled up into the ambulance. We sat there for a while, while the paramedics took vitals and attempted to get an IV in and get me anti-nausea meds. I was already on the verge of vomiting and an ambulance ride was not going to make it any better. As always I warned them that I am a tough stick, and as always who ever is doing the sticking claims they are the best and not to worry and as always they never get it the first time and ruptured my vein. You’d think one day someone would listen when I say I have tough veins and some are scarred up from all my surgeries and don’t even work any more. Nope. Never. The Paramedics were great on the ride to the hospital, very friendly and helped me relax. When I went to the hospital I was brought to a room to wait for the doctor and so it began. It was like everything went exactly how the blog post I had made the previous night had stated.
The doctor was an epic dick. He did not give a shit about any of my history and clearly had no concern for the state I was in. I wasn’t able to find words, my speech was severely slowed and I was disoriented not to mention the fucking spinning. I just wanted the room to stop spinning. Instead my grief was added to by having to deal with this insanely inconsiderate douche bag. After walking through my history with the help of my mom and my friend the doctor asked me questions about my symptoms, when they started, etc. As per usual it was the third or fourth time I had explained everything. The doctor then looked at my mom and said “well, she seems fine to me” to which my mom with a shocked look on her face responded “what are you talking about?” and pointed out the obvious. “She clearly is having cognitive issues not to mentioned the other symptoms”. He replied “well yea, but it’s not like she came like “MUUUH”” to which he made a noise of what I assume was his attempt to sound mentally challenged. Obviously “MUUUUH” was the latest in technical doctoral terms. He then proceeded to shrug to my mom and said they would give me some medications but there was nothing else to do. I could only compare this doctors treatment to that of the famous Dr. McDonald (whom I have written about in previous posts) my arch rival. It was so ridiculous… we were speechless. I sat back and rolled my eyes wishing I could say I was surprised but reminding myself of his clearly medial education and questioning why anyone who treats patients this way would ever become a doctor. My mom and dad went into the hall while she flipped her shit on this situation. My friend, I could tell was in disbelief. I think it’s one thing to hear all the horror stories, but to see it first hand gives everyone a whole new perspective. We were just talking about it the other day and I could tell that specific moment really got to her. It’s hard to not let it get to me. I want to crawl in a hole and cry in moments like these, but not this time. Instead I just wanted them to hurry up and help the spinning and nausea stop so I could get the HELL OUT OF THERE. A few hours later I was home.
While in the hospital I was communicating with my doctor who did the Chiari surgery about everything that happened that day. Thank goodness for Dr. Small giving me his cell phone number! I love the guy but his office is horrendous and I would never be able to get in to see him when I actually need to if I didn’t have direct communication. He obviously knows I only contact via text when it is an emergency. He would get me in to see him Tuesday. I started to feel a bit better by Sunday and figured I would just return to work on Monday the next day. My boss was surprised by this but I didn’t feel like being cooped up at home anymore. When I saw him the next day in the office he asked about everything that had happened and I told him the story. I explained to him they were suspecting “brain slumping” which came up after folks in my chiari board looked at images from my brain MRI. I explained that it apparently happens when too much skull is taken out (for instance when they did so in my 2008 surgery to treat the chairi) and is treated with surgically implanting a metal plate into your head. I proceeded to joke about how fun that will be when I go to the airport and how I could let the Terminator jokes begin! and laughing while doing so. He looked at me so serious and said “You have to be the only person on this earth that can laugh about all of that”. Even just typing that I giggle to myself, I just can’t help it. I explained to him “Better to keep a positive attitude then throwing a pity party, that would get me no where and would change nothing”. Truer words have never been spoken, as my mother would say. Maybe it’s because I’m so numb to all of the insanity that is my life and to all the bad things that keep happening. Maybe I really have been able to accomplish this positive attitude about everything. What I can say is that when all of this was happening and I was recovering over the weekend all I could think to myself was “one step forward, two steps back”. I was dwelling on the fact that things had finally started improving, I was back working full time, I was feeling as good as I could and managing well, and then this hit me. Well, it didn’t exactly just hit me, but a really bad episode hit me and it has been pretty rough since. After having that moment I knew I needed to get myself out of the funk and just remind myself that Ce’st La Vie (Such is Life) and you gotta find the humor/silver lining in this. So, I found it in the terminator and thinking about what it’s going to be like going through metal detectors! hah! why not?!
When it comes down to it attitude really is everything. It has the ability to change an entire perspective of a terrible situation in a matter of moments. One thought in the opposite direction, one laugh, one moment of pause to take yourself out of going down a dark path has the power to change a persons entire outlook. This made me think about a quote that I see often posted by many folks with chronic illness “You are not your disease”. For a while I thought this was great and I understand the intent in saying that your disease does not control who you are. The more I thought about it, however, the more I disagreed. If you really think about it your disease is who you are. It makes us who we are. Every scar on our bodies, every pill we take, every doctor we visit, every needle and test we endure. We are our disease. Every friend we have lost, every event we have missed, every activity we can no longer participate in. We are the image of what it is to be chronically ill and I proudly wear that on my sleeve. It’s the reason I have this blog and it’s the reason I am who I am or I should say who I have become. I heard a fantastic quote while listening to the TED radio hour on identity stated by Andrew Solomon. He said “As long as you experience your condition as an illness it’s a prison, and once you experience it as an identity, it’s the source of your freedom. If we can treat illness as identities we liberate people into experiences of great joy that would otherwise be closed to them.” This just spoke to me. This is exactly why I say the things I say to lighten the mood, to change the attitude. This is why I tell everyone my entire medical history when they first meet me! Even in job interviews! Because it IS who I am. Our identities are pieces of multi-colored glass just waiting to be put together into a stain glass portrait that makes us a whole. My identity is many things; mother, wife, business woman, American, Trinidadian, musician, and the list could go on. What’s important to realize is that our identities change as life goes on …. and as life experiences make us who we are, they change our perspectives and they change our attitudes. I am chronically ill. Yes, it’s just a piece of who I am, but it is what I am and it is who I am and it has played a very big role in making me that way. My inner strength was not realized until I became sick. My ability to endure one disaster after the next and still pull through with a smile on my face. My capability to talk about maybe needing surgery to place a metal plate in my head and laugh about it to my boss. I have always thought of myself as a positive person but if I think back 10+ years ago I don’t think I would have been laughing. My illness has taught me to laugh more, let go more, and that life is what it is and it is out of my control. What is in my control is my attitude. How I handle the things that come my way, could do more than just improve my day. It improves my quality of life and gives me that little bit of extra fight that I know we all have deep down in us.
So ,as I face this new challenge coming my way, you better believe I’ll be laughing the whole way to the operation room because I’ll be damned if I’m going to let my diseases get the best of me now! Stay strong, keep fighting, keep smiling, and embrace who you are. When in doubt, just laugh!
~Just a Regular Sick Girl
~Update: Just to provide an update, my doctor agrees I most likely have a brain slump and is working with the Chiari Institute in NY to determine how to do better imaging with different positions. More tests will be ahead, I am on medication to help right now that aren’t really working all that well so here’s to hoping we get this resolved quickly! Thanks to all and lots of love!
Below: Keeping the positive attitude and Raising awareness! May is Ehlers Danlos Awareness Month!