Why I Had Not Posted in a While

Hurricane Maria happened. I posted in my Tarlov Cyster blog because I focused more on the physical toll, and not on the emotional one.

 

Going Beyond the Body

Tarlov Cysts Updates

It has been two years – almost – since I was diagnosed with Tarlov cysts. I could still distinctly remember sitting on a bench and blankly staring at the white walls of the hospital where I had the MRI. Doctors assured me that the condition was not malignant, that I was not going to die. These declarations were somewhat comforting but could not change the fact that my world had turned upside down. There was also the worrying fact that most doctors do not really know what to do with the rare disease.

A few days after, I quit my gym membership. I stopped carrying my preschooler around, and he begun to wonder. Of course, he was getting bigger but the change was so abrupt he thought that something was wrong with our bond as mother and son. He acted out for awhile, but now he finds the few times that I carried him as special. Those few times could effectively calm him down from a tantrum.

I could no longer run, or walk as fast as I wanted. I had to find new ways to maintain my weight, and I need to do just that if I want less pressure on my back. With my PCOS (polycystic ovary syndrome) adding to the brew, I thought I was fighting a losing battle. However, I was able to find a rhythm, the commutes and walking, the pacing around in the classroom as I teach, and the short breaks for lunch had managed to solve the weight problem. I lost more than ten pounds without any gym membership. But that was just one small part of the whole problem.

For a while, I thought things were fine. After seriously pondering surgery, my neurosurgeon had finally given me an okay signal. She was so happy that things were going well with me, that I was not suffering from symptoms, that she ended up returning all of my MRI records to me. She said that the pain that I was experiencing was more likely produced by my herniated disc, and not by my Tarlov cysts. Yes, I also have that problem. I don’t even know if the disc could be somehow fixed without affecting my cysts. I also have bilateral scoliosis. Things were pretty darn awesome. Let’s get the party going.

Last week, however, things went south fast, in more ways than one. I had a sharp pain that reduced me to tears. It started off with strong pressure on my lower back. I actually thought that I was about to have an unwanted bowel movement at work, but it was not the case. The pressure continued to build until I recognized it for what it was – PAIN, in capital letters, yes. The pain was worse than the one I experience when at labor.  I was rushed to the school’s clinic (I work as a college instructor) on a stretcher. It was embarrassing, but necessary.

Today, my pelvis feels like it could break anytime. I walk as slowly as I could. I am afraid to do things. I am afraid that I would end up a cripple. I should get an MRI again. The cysts could have grown larger. The herniated disc may be in worse condition. I do not know what to think.

On the other hand, I want to be free with my movement again. I want to have another child. I want to hike, climb, run. I also want to be understood, because people like me with invisible diseases are often misunderstood.

 

 

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Strange Dreams

I have been having strange dreams lately. I dreamed of a frog suctioned on the edge of my tongue, unwilling to let go. I could remember the disgust I felt. That disgust was different, not quite heartfelt. Instead, it was like a concept hovering over me, recognized but not fully internalized. Someone – I was not quite sure who – in my dream said that the frog was supposedly known to do that. It was an accepted fact, a habit on the frog’s part to hop into people’s mouths and just clutch as mightily as it could.

I also dreamed about a bunch of people dressed up in “Ghostbusters” gear, hunting for eggs that are supposedly very priceless. Doing so without getting official permission by a certain organization would mean jail time. Still, off this group go – hunting for huge, precious eggs.

Both the frog and the eggs symbolize fertility, a welcome theme for someone who was almost unable to conceive a child and for someone who must continue thriving in a creative community. Maybe, my writer’s block would end. Maybe I would start drawing with some inspiration again.

However, there is also a darker tone to all of this. I received the weird set of dreams after I laid down to sleep without my pain medication. The sudden change in sleeping activity reminded me that I had become so dependent on Lyrica to make me survive each day. Whenever I remember just how scary it is to have growing cysts on my spine and how they eat at my bones, I could not sleep. But I want to sleep, even if it means giving in to strange dreams.

It has been awhile…

Due to many responsibilities (work, graduate school thesis, my family, my organizations), I had not been able to update this blog for quite some time. Now, I have decided to give this another go. What prompted me most were the queries and comments about my tarlov cyst. There are other people out there – in this country – suffering from the rare disease. This time, I think it is time to reach out. I also want to know more about my disease – why it strikes only a few people and how it comes about in the first place. I am terrified about the idea that my bones are being slowly but surely degenerated by my disease. Surgery is even more terrifying. I would have to put myself and my ability to walk and function normally at risk if I want to completely get rid of my cysts. Sometimes I forget that I have this disease. Whenever I do remember, it is frightening. Writing about it and reaching out to people who are suffering quietly like I do makes things just a little better.