I took a break from blogging because I was not well and was also a little bit paranoid. Coughing a lot can do that to you in the time of COVID. But hey, a negative COVID test certainly made me feel a little better. I know it is an antigen test, which is not as accurate as a PCR test. However, combine that with the negative tests of all the people in my family and I feel much better. It helps that I barely leave the home. I protect myself with double masks and shield when I do. I am fully vaccinated. Why was I still worried? Well, I am an asthmatic and my unvaccinated son (waiting on the Pfizer vaccine) is, as well. I support vaccination, but I am aware of the possibility of breakthroughs. But there it is – a negative test. Whoa. My allergies and asthma have not stopped plaguing me, but at least I have more peace of mind.
I have not left the house for DAYS. When I do leave, I only do so to speed through the supermarket aisles and get what I need. Right away! But if I do go out today, some people will probably avoid me like the plague (yeah, pretty close) because of my asthmatic cough.
The nights are especially terrible. Post nasal drip keeps me up at night. The only thing that helps me is a Piriton tablet to stop the dripping. What I don’t like about antihistamines is that they make me fall asleep almost immediately. I cannot even watch anything after I have gone through my full workload for the day.
Anyway, my asthma and allergies have been acting up. The only comfort I have is that my husband knows his status (negative) and we have both been fully vaccinated. I am gathering the courage to have my twelve-year-old vaccinated, as well. He has asthma and may need extra protection.
Some people don’t like it when you tell them unpleasant things. Well, I started the year fat and pregnant – but happy. I was supposed to have a baby in September. The pregnancy did not continue developing and I had “spotting” while teaching at school, but the sac was still growing. When I was admitted to the hospital to expel the palm-sized sac, I refused all pain medications. Just because I did not cry, people thought that I was not in pain. I was, but I was suffering inside so much that I thought it was just right that I felt it physically, too. I went back to work while I was still having severe cramps and bleeding. That was better than staying at home.
Soon after, we went on lock-down. It was challenging to be locked in with your thoughts. So, I found some clients to write for. I now have 4 steady clients and I am going nuts but it is better than being left to my thoughts. I also exercise a lot. I lost 8.5 lbs in 5 weeks, shedding a few more of the proof that I was pregnant earlier this year. No, it is not easy to just rise from the trauma and say, “Oh, let me get pregnant again.” Would I have any emotional support? I remembered I stopped talking about my loss because people felt uncomfortable. Nobody wanted to talk me through it, except a few friends in the Philippines via Facebook messenger.
Social media has taught me a lot lately. I realized that when you asked for help on social media, it is equivalent to being stabbed in public. Your friends and family who are not there in the streets to see you get stabbed are excused. They did not know. How could they help? But how about the others who were able to read your post?
My fundraiser had several reactions on Facebook:
- some immediately donated money from their pockets (they are like the ones who have cars and can drive you to the emergency room in no time)
- some did not have extra money but made sure their concern is felt through PMs and other contributions (prayers, blood, messages of support, re-sharing of link) – they are like the ones who do not have vehicles themselves but are there to press on the wound while calling 911
- some merely watched as I see group posts racking up “seen”, but I did not get a message from them (they are those who watch on the sidewalks, afraid that blood will be splattered on them)
It sounds slightly bitter, but I have to be brutally honest. Social media had shone a light on who my real friends are. Weirdly enough, a lot of those who offered their help (in words, cash, prayers, blood, etc.), were strangers. They had the right to turn their backs on me. The stabbing did not concern them. They do not know me, and yet they were able to say kind words. Some even took out money from their wallets. For all they know, this could all be a scam – this fundraiser for my 26 weeker niece. I could not blame them. In the streets, people worry about helping a stranger because it could be a ruse for a stickup. But friends, people who know you, they should be there. Right?
As a college student, I was extravagantly generous I would say. My dad is a doctor, after all, and he was also generous. He charges very little compared to other specialists. He worked free of charge several times when I was still little. He is a good example.
I once paid 3000 pesos to get a friend’s hair fixed. I lent 5000 pesos to a friend in need. I lent 1500 pesos to a student of mine. I never heard from him again. I never minded paying for my friends’ lunches whenever we went out because my tummy was too sensitive that I could no eat at carenderias. I guess I was hoping that karma would unleash something good for me. In the end, there are simply people who are good no matter what their circumstances are. The richest among my FB friends never contacted me. Friends who are struggling teachers, writers and artists are the ones who offered comfort in my time of need.
Because of my beautiful angel-niece, I learned a lot about friendship and appearances.
I have had my heart broken before, but not with the same intensity in which it broke yesterday.
I had lost a romantic relationship. It hurt a lot. I was twenty two and thought that it was the worst thing ever. I drank wine for a week, and then I was back on track because I refused to ruin my life for someone who never deserved even a glance from me. Looking back, I believed it was more of the pain of humiliation that made it hurt. I am, after all, quiet but proud.
I had lost grandparents, both pairs of them. It was sad and yet peaceful. I never met my mother’s parents. My dad’s parents died in their nineties. They lived full lives.
Yesterday, however, was different. My little brother – who although only three years younger was like a first child to me – lost his little angel. 26 weeker Jordana Belle fought hard. She was in the NICU for more than 60 days. All she knew was the plastic case of an incubator and the pain of being prodded everyday. She had a little taste of her mommy’s breast milk. Her tongue usually slid out as if looking for more, but her feedings were interrupted by caution. After every feeding, her tummy bulged. Her intestines could not take too much feeding yet. Her liver was getting bigger. And everything was falling apart and a part of us knew it even weeks before, but we continued smiling and praying and hoping.
To make things worse, half of the family is in the Philippines: my brother, his wife, and our mom. My dad, my husband, my son, and I are here in Dominica, tens of thousands of miles away. Each one of us grieves. Even my son had to wipe tears furiously at mass, attempting a big boy stance. We grieve silently. Only the closest people know. I am sharing this because those who cared enough to read my past blogs – precious few – deserve to know what happened next.
Please include us in your prayers.
It’s hard to ask for financial assistance in the Philippines unless you are completely impoverished or well-connected (extremes, both of them). My family is well-educated but every penny is hard-earned. My dad and brother are both doctors. My dad started off as a generous doctor, who has a tendency to be charitable to his patients. It is good for the soul, but not for the pockets. Still, we all have no regrets. Helping is helping. Helping is good. This time, though, we are at the other end – we also need help. My brother is still a resident doctor in a government hospital. He had about more than 600,000 pesos in savings. He had to give them up in just five weeks to the hospital where his 26-weeker daughter is fighting to survive. NICU spending is no joke.
There are four ways to help:
- donate funds via Generosity (see link above)
- donate funds via my brother’s bank account number (for this you have to email me at firstname.lastname@example.org)
- share the link to your social network
- pray to the God that you believe in. He has many names, but there is only one that we all look up to.
Current weight at day 43: 820 grams
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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.
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.
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.