Difficult Years

It maybe difficult to write but I believe that I owe it to others who are suffering or loved ones of sufferers to share the details of my condition in order for them to understand more about the disease. We can't all suffer quietly. We need to tell the world we are here and let them know what we're going through. I'm tired of suffering this invisible disease where only I/or maybe God knows what's going on with me. Hardly anyone can sympathize with you because you look normal as can be. You're screaming in pain at the hospital and others look at you like you're exaggerating. Even your care provider thinks you're making things up or look at you like you're crazy. 

I started this entry almost a year ago but never finished it. Using my eyes and my fingers is almost impossible but there's so much I want to share.

Syringomyelia does attack you at will, like one sufferer said, it leaves nothing. It penetrates every part of your body. It had gone to my tongue, jaw, nose, ears, skin in my head and forehead, my eyes and lips.

I don't remember if I had mentioned that in 2014 my body almost doubled in size. My legs became bigger and almost every part of my body. (I had to change my whole wardrobe from a size 4 to size 10!) It has been depressing for me. My right nostril has been swollen since making my nose look even bigger. My forehead down to the lids of my eyes are wrinkly and so dry. The lids drooped and are covering most of my eyes that my Ophthalmologist recommended that I have surgery but I refused. It worked out because now my eyeballs are sunken like having Enophthalmia. It's always horrifying knowing that my eyes 
will just stop functioning anytime. My eye doctor said to call her even at midnight when it happens. Her and I are just doing 
everything we can to prolong their life. 


The pain in my eyes is very intense. It's searing, like slashing with blade. It's agonizing pain. I always say, it feels like my eyeballs are being pulled out of their socket. I can't open them without eye ointment. Applying eye ointment makes everything blurry. Try and 
picture that. With grease all around it. So sexy! In addition to wearing a neck brace. Hmmm so hot!lol.

But what are you going to do? Just live with it. It's alright. It's not too bad at all. Keep praying and make yourself believe that everything will be better. It always helps. 

My Letter To Those Who Are Not Aware of Central Pain

Central pain syndrome (CPS) is a neurological disorder consisting of agonizing pain signals of many differing types all at once: burning, acid burning, freezing, shocking, aching, pins and needles, lacerating, crushing, tearing, stabbing, electric shock and spasticity. It has been characterized as the worst pain known to man. It is caused by damage to or injury of the Central Nervous System (CNS), which includes the brain, brainstem and spinal cord; its causes include but are not limited to, stroke, MS, epilepsy, Syringomyelia, head & spinal cord injuries, aneurysms, tumors and infections. It is estimated that millions of people in the U.S. suffer from CPS. It is aggressive, never ending and disabling, making normal life immensely painful and incredibly difficult. The medications and treatments used to fight it are very limited and highly ineffective. There is presently no cure.

In my case in particular, I was born with Chiari Malformation. With Chiari Malformation symptoms alone there's a lot of pain I have to endure including paresthesias and dysesthesias. Having a 
congenital disease that wasn't detected for 38 years it became more complicated that my own Cerebrospinal fluid was redirected to my spinal cord destroying it from inside out. I have a cyst or in Greek term is called "syrinx" in my spinal cord from C3-T7. That's  like a foot long. This condition is called Syringomyelia (from the word syrinx) which is very debilitating and it comes with even more complications and extreme pain and can cause paralysis. Some of the complications I suffer from are incomplete Spinal Cord Injury or Central Cord Syndrome, Central Pain Syndrome, Neuropathy, Autonomic Dysreflexia, Autonomic Dysfunction, Myalgia and Myositis, Radiculopathy, Cervical Spondylosis,Myelopathy, Spinal 
Stenosis, Brachial Neuritis, Gastroparesis, and Cervical-Thoracic-
Lumbar-Sacral Neuritis. 

This malady causes a different degree of pain unlike the pain that we all know normally. This pain is out of this world! I want people to know that I'm not weak and most of all I'm not making up and I'm not exaggerating my pain. It is real! At any given time I can have lacerating, crushing, stabbing, electric shock, tearing, burning, freezing and spastic pain. It is agonizing and when others ask how I'm doing, it is very difficult to smile and say I'm doing fine. At this point where I had been going through this pain for 18 years there are days where I just want to be in my room and not talk because everything that comes out of my mouth is negative if I had to say something at that point. Some people with Syringomyelia at age 50 prefer to be euthanized because they have endured too much pain.

The lower part of my legs down to my feet is painful 24 hours a 

day. I have feet that feels like they have no skin. Then acid was 
poured into them and the acid is constantly bubbling all over my 
feet. The pain in my feet is very intense, searing, piercing, blade-like slashing, pins and needles and it's agonizing. They're always cold as ice but covering them with blanket or a hundred sheets doesn't help, instead the weight of the blanket makes the pain 
worse. I keep a heating pad for my feet that is on for 24 hours. I have legs that feel like they have no skin in them and just a breath of air can trigger a lot of pain. I have hands that feel like they were hammered flat with the meat exposed just dangling, with violent raging pain. I have arms that feel like they're being pulled out of their roots, just dangling with no strength in them but are very heavy with their bones sticking out exposed with constant pain of different kinds including numbness, tingling, pins and needles, skin is being peeled out and is on fire. My whole back including my chest and shoulders are hard but spastic, feels like they're 
cemented but the pain is very deep that comes with numbness,lacerating, pins and needles that makes me feel nauseated. Not to mention the severe itchiness that causes my skin 
to peel from scratching. I have long ignored and forgotten about my 
stomach which becomes painful and bloated with just a touch  of clothing. I used to watch what I ate because it might hurt it and be bloated but later I decided to stop caring about what I ate because each time I swallowed food it would get bloated like I'm nine months pregnant and painful and would cause a lot of trouble for my stomach. Then people think I'm fat because of the bloating and edema. But I stopped caring about what people said. Many years ago I had to go to the backyard so I could scream because of 
the agonizing pain. I couldn't even describe it. I have buttocks that feel like it's broken into pieces and they're on fire. I have a neck that is constantly being ripped apart, their bones crushing with each other, lacerating and all kinds of pain that I just have to learn to ignore it. I have a throat  that always closes when I swallow that it feels like bone pushing on a bone each time I swallow. I have eyes that  are slowly getting blind, with unbelievable pain like slashing 
the whole surrounding with blade, the eyeball being pulled out of their socket constantly that I need to lubricate them almost every 20-30 minutes to try to soothe the pain. Because of damage to most of my Cranial nerves that the skin of my head, forehead and back of my ears are itchy like they have skin disease. My forehead that used to be shiny and fine now became wrinkly. Different cranial nerves control different parts of the head. Damage to Cranial nerve II or Optic nerve which connects the eyes to the brain is the reason for my eye problem. My right nostril has been swollen for almost four years now. I believe that's from the Maxillary nerve. The damage to Hypoglossal and Trigeminal nerve caused my tongue to atrophy. They quiver and wake me up at night. All of my teeth hurts because of the damage to Maxillary nerve, a second division of the Trigeminal Nerve which is Cranial nerve V. I can go on and on but I won't because I can't stop. 

This is not to complain. I want people to be aware. I've been fighting this battle for 18 years. Although not too many can be sympathetic because it's all invisible. Only God knows what I suffer everyday. One person told me I look normal  and why do I need help? Some say I should not complain because I can still move. Sometimes you have to forgive me when without thinking I tell you what I'm going through. I think it's easy to complain because it's constant. And sometimes because people don't see 
what's wrong that I tend to let them know. Which is not good.

I want people to understand that with a C3 injury, a person looses the use of their trunk, arms and legs and becomes bedridden. I have been fighting paralysis for years now. My prognosis was I would 

have been paralyzed by 2010. I lost the use of my trunk and my stomach that the easiest and most comfortable position is to lie 
down. Not because I am lazy that I always want to lie down.

Please understand that I just look normal on the outside, inside I'm suffering from debilitating pain and a lot of dysfunction. If you saw me being able to do one thing it doesn't mean that I can do it again. It's not always the case. It might take me another year to be able to do it again. It could take months or even a year for my muscles to recuperate after using them. I take a lot of medication to block my pain in order to help me function. 

I depend on you ~ people who are able bodied ~ for many things. 

But most importantly, I need you to understand me.

I Feel So Much Fear But Still Hopeful

10/12/14

It has been a year since I gave up gardening. I hope that I will never have to give up cooking! The only thing that's left that I love to do. A neighbor of mine told me he goes to yoga classes at  the clubhouse and when I was scooting with my dog, I became very emotional. I always feel left out whenever I hear that subject. I used to cry when I see someone just running. It took many years to get over that. I felt that if I was normal, I'm sure I would have looked better if I had still been exercising at the gym like I did most of my life until 2007. I miss my yoga and body sculpting classes!!!! Now there's not even a trace of the toned arms anymore!

Lately, I had been too weak to do anything. I try to recuperate as much as possible. To lie in bed after a busy day is restful but to lie in bed because that's all you can do is tiring. It causes even more numbness and stiffness in your limbs and torso. It can easily cause depression, sadness, anxiety and everything that would cause melancholy. Unfortunately, you don't have any choice but to beat it, there's no other way. I should still hope that one day I would be able to do things again. It maybe impossible but it sure helps to make the day better. (Just to put myself in a better mood) lol.

The Spinal Cord

The Spinal Cord is connected to the brain and is about the diameter of a human finger. From the brain the spinal cord descends down the middle of the back and is surrounded and protected by the bony vertebral column. The spinal cord is surrounded by a clear fluid called Cerebral Spinal Fluid (CSF), that acts as a cushion to protect the delicate nerve tissues against damage from banging against the inside of the vertebrae.

The anatomy of the spinal cord itself, consists of millions of nerve fibres which transmit electrical information to and from the limbs, trunk and organs of the body, back to and from the brain. The nerves which exit the spinal cord in the upper section, the neck, control breathing and the arms. The nerves which exit the spinal cord in the mid and lower section of the back, control the trunk and legs, as well as bladder, bowel and sexual function.

The nerves which carry information from the brain to muscles are called Motor Neurones. The nerves which carry information from the body back to the brain are called Sensory Neurones. Sensory Neurones carry information to the brain about skin temperature, touch, pain and joint position.

The brain and spinal cord are referred to as the Central Nervous System, whilst the nerves connecting the spinal cord to the body are referred to as the Peripheral Nervous System.

It is important for us that are suffering from spinal cord diseases, injuries or any issues of the spinal cord to know and learn about the function and levels of the spinal cord and it's effects on us. That way, we have more understanding of the pain that we go through. 

Depending on which level of the spinal cord our syrinx is, if we know the function for each level and what nerves it innervates, we will have more understanding of our pain.

Nerves called the spinal nerves or nerve roots, branch off the spinal cord and pass out through a hole in each of the vertebrae called the Foramen. These nerves carry information from the spinal cord to the rest of the body, and from the body back up to the brain.

There are four main groups of spinal nerves, which exit different levels of the spinal cord.

These are in descending order down the vertebral column:

Cervical Nerves "C" : (nerves in the neck) supply movement and feeling to the arms, neck and upper trunk. Also control breathing.
Thoracic Nerves "T" : (nerves in the upper back) supply the trunk and abdomen.
Lumbar Nerves "L" and Sacral Nerves "S" : (nerves in the lower back) supply the legs, the bladder, bowel and sexual organs.

 A person with a syrinx from C1-C4 has the most complications. This is what is referred to as Syringobulbia. This refers to the involvement of the hindbrain. With the involvement of the hindbrain, the degeneration of the disease is faster. There is almost no remission.This is the nature of the disease.

Levels of injury and its effects:

High Cervical nerves C1-C4 - This level has the most complications. Affects arms, hands, trunk and
legs.  Difficulty breathing, controlling bowel and bladder  movements. Ability to speak is sometimes reduced. May not be able to drive a car. And because it affects the trunk, some end up being bedridden. A person might require assistance with daily living.

Low Cervical nerves C5-C8 - Corresponding nerves controls arms and hands.

C5- May affect wrists, hands, trunk and legs. May have breathing difficulty. May need assistance with activities of daily living. 

Not yet, Bedridden?

The last three years had been devastating for me. Before those three years, despite the pain I was going through, I was this happy, hard-working individual. I went through tough times now and then but generally, I was happy. It brought me tears of joy when I inspired others. I was energized when I was around people. I remember just being able to drive or to scoot to the nearest grocery store about less than a mile away from my house to pick up a few things that I can make for dinner used to make my day ! Meeting an old co-worker for coffee even for just a few minutes or just seeing friends anywhere and have a little chat with them was magic! I brought home with it a big smile on my face that I carried for days. Also it made me feel great when I was able to do things that I want to do. I felt so proud of myself that besides having an illness that is so debilitating, I had the energy to do a few things I want to do. I always felt lucky. And there was gardening then, it was therapeutic.

I question myself now after about three years later why I haven't felt that way for a long while?  I thought that I must have been more courageous if I had not lost the use of my trunk. During the first few months that this happened, I was oblivious. But when the situation became weirder as in needing to lie down during flights or laying down during car rides., I began to feel more gray. Especially when in November 2013 when an old symptom from 15 years ago came back, only it was more pronounced that it became even more difficult to be positive.

The pain in my buttocks that goes down my legs has always been there since 1998, but after a couple of  lumbar injections many years ago, it was alleviated. But late last year, it came back and it was more magnified and widespread. It's attacking all of my lower extremity, including spasms and pain in my bladder, along the femoral triangle. The pain is excruciating. It's like melting my legs. It is difficult to stand up. I felt like there's no fluids running down my lower extremity. After a visit with the Gynecologist, he prescribed Premarin. I felt this problem a while back, sexual dysfunction. Now I need fluids  in all the orifice of my body. My Ophthalmologist said there's a possibility that I could get blind. I have three different eye drops for my eyes and an ointment. I also have drops for my ears. Also, it's hard to sleep  not only from positioning but from itchiness in different parts of my body. I have rashes everywhere especially in the back of my neck and extremities. The back of my head where I had a couple of surgeries also itches a lot. Grr..

It became more apparent that I'm now loosing the use of my legs. From being dropped off by my partner wherever we went to not wanting to go anywhere. I'm pretty sure he's disappointed. I felt stuck at home, in my bed, even avoiding to go to my doctors appointments. A couple of months ago, my bedroom was moved downstairs to make it more convenient for me. I was in it all day and not wanting to be anywhere but my bed because the degree of pain that I had to deal with when I stood up and so I avoided going places. There's not much physical activity I can do. There's not much you can do when you're in bed. It's depressing, I think. I feel rebellious at times. I don't know. It's another chapter in my life. Maybe one day I would be more accepting of my situation. Like when I had to stop working, it took me years to accept so maybe this will take years also.

Looking out from my bedroom window this morning, I was admiring the birds playing in my neighbor's roof. Maybe this is the beginning,lol! Starting to appreciate things that you see and do even if things don't go your way. I guess this is the way it has to be since we definitely don't have control over our fate, health wise especially.

Just Had Another Surgery, my 8th one.

Note: This is an older post sitting as a draft for a while that I just published. I was in better condition then as I was able to travel.

We arrived early in Manhattan after a Jet Blue red eye flight on Friday night, Sept. 9, 2011. Checked in to our Hyatt hotel at the theater district about 8 o'clock and walked to Central Park right away. It was nice to finally see the park which I just saw in pictures for a very long time.

After walking for more than a couple of hours (of course, I overdid again), we were ready to have lunch. Luckily, we hit a good Italian restaurant that served good pasta, a meal that our body needed at that time. We took a cab back to our hotel and took showers and to bed we crashed and woke up just in time to go see the off broadway show, Rent. It was fun. We were hungry after the show and walked around to find a place to eat. Went to Junior's but looking at their menu really didn't give us any craving for their food. A local guy showed us a place for a good pizza, it was actually really good!! After eating, we kept walking and just joined the crowd for the pre-celeb of the 9-11. We took lots of pictures. After 1 AM, we finally headed back to our hotel and we were both tired and slept through the night.

I was asleep when Kev left for the towers to see the 9-11 Anniversary celebration. He just took pictures because it was very crowded and it would be a fight to get closer. I was almost ready when he came back to the hotel. We took the subway, I really wanted to see Eataly, owned by the famous chef Mario Batali, best known as the world's biggest eatery. Everything was gourmet. We tried many kinds of food and it was all great. Then we headed to visit Kev's niece who lives in East Village. It was nice seeing her. On our way back, we stopped by at this famous pizza place called Motorino's but we didn't have enough time to sit and eat. We stopped by Union Square and I asked Kev if I can have a few minutes to buy a flare jeans, (a new trend of jeans at that time) and I did, but up until this day I never got to wear it.

We went to see broadway shows. I was guessing that Kev enjoyed Rent more than Billy Elliot but I did enjoy Billy Elliot, a lot. I was glad we went and saw it. Later, Kev said seeing it was like a tribute to his sister Eileen who was a dancer.

From Manhattan, we went to Flushing the day after to watch the US Open Men's Final's. All in three days!! We were tired, but we had a great time. I don't know what effect it would have on my already spastic torso and aching legs, but I think it was all worth it. We left our hotel that evening and headed for Long Island where my surgery would be done.

I was ready for the surgery, after all the fun we did. Tuesday, Sept. 13, was a day full of appointments. First was at the North Shore University Hospital for some test that I can't recall and then the EMG at 12Noon, next we headed to the Chiari Institute to meet with Dr. Bolognese. When we got there, we were informed that they had left us a message that the surgery schedule had moved up from 12N Wed. to 7AM. After meeting with the doctor around 4:30PM, we were told to go for an MRI and wait for the results and bring it with us to the hospital. We left the Imaging center at
7:30PM.

Kev asked me what I wanted for dinner and for some reason, we had a miscommunication and we ended up driving back to Chinatown to buy dinner. We arrived at The Variety House (where we were scheduled to stay until we leave on Sat.) late that night and Dennis, the VH supervisor came in later and talked to Kevin and I. We tried to get some rest and left at 5:30 in the morning. The hospital is like a five minute drive from where we were.

I was ready for the surgery, no second thoughts and no anxiousness unlike the past surgeries I had. Dr. B. met with Kev and I first thing in the morning and informed us that the surgery will not help my Thoracic spasticity at all. The surgery will cover only the cervical problems I was having. I didn't expect that it will cover more than the cervical.

Surgery went well except the horrifying pain I was in after they wheeled me into recovery. Because I cannot lay on the left side of my back and left side of my head due to C2 neuralgia which after surgery were all numb and excruciatingly painful. I was screaming at the recovery and no one was coming to my cries. I waited for two hours. At 8PM, Kevin came to see me after his excercise. I saw he was sweaty and there was air conditioning inside, first thing on my mind was he might get sick. It was nice of him to bring me some stuff I needed. He also went and bought me ice cream which my
doctor ordered in order for my throat to heal fast!! I know this guy loves me and I love him dearly. He stayed for a couple of hours. And everyday he would come in the morning and in the evening.

Kev got sick, must be from the air conditioning while he was sweaty. We both had to stay in bed for the rest of the time we were in Long Island until it was time to fly back.

I want to thank my partner for this trip. Without his help, this trip would probably not have happened. If it did, it would not have been fun at all and comfortable. Kevin planned it so everything went well and it was full of fun. And best of all I was able to spend time with him the whole time. I love him with all my heart! He is the best!

Keep Trying to be Courageous

Until when am I going to play courageous? At times I wanted to give up, I feel like 19 years of being sick is too long. But I can't give up.

I have to keep going.  I think about my son, even though he's older now, I live for him. In fact I want to be healthy so I can see him graduate, get married and hopefully have children. I wanted to be there for him. Although I haven't been able to do much for him, I'm sure he still needs me. Being able to provide him with moral support is very important. My son and I have a very strong bond. I live for him and our 14 year old dog. I can't wait for my son to graduate. One day after my son graduates, I hope to still be able to spend time with my long time love of my life. I sacrificed not being with him because I wanted to help my son go to school and finish.

It is very difficult to deal with everyday pain, it is 24/7 but I try not to dwell on the pain by finding things that are interesting for me. I get by somehow. One thing that make us happy in our home is good food!

I have to be honest that there are days where it's difficult to hide your pain and the one thing I hate most is to pretend that everything is alright. It's because I live with other people. Those days when I'm in so much pain I wish that I can just live in my room.