It's Alright Now...

Besides having a lot of issues, mentally I've been much better. I'm not sure if I had mentioned about my diagnosis in 2007 which were Gastroparesis and Cervical Spondylosis. One of the doctors said to me that my neck was like an 85 year old’s. I didn’t think much about it, being aware of having a degenerative ailment, anything could happen. We can only hope for the best. This time, the cervical spondylosis had turned into Central Cord Syndrome. It's difficult to deal with thoracic symptoms as it is and to add central cord syndrome  symptoms is too much. Cervical syrinx causes more complications especially when the brainstem is affected as in my case. The degeneration is also faster in Syringobulbia. Besides suffering for so long, suddenly I felt that my symptoms are only getting worse. The room for improvement to much of my life is slim and seemingly inconsequential, when stacked beside the physical and emotional pain I have to endure every day. I have a lot of physical pain, and discomfort, much of which there is nothing that can be done to change it. But there's not much we can do to change it. I just have to enjoy the things I can still do, whatever it may be.

I continue to take 3600mg/day Neurontin for almost 13 years now. 300mg/day Cymbalta, 150mg/day Ultram, 5mg/as needed Diluadid and 20mg Baclofen at bedtime.

Let me tell you a little bit of what Central cord syndrome is. It is a form of incomplete spinal cord injury (in which some of the signals from the brain to the body are not received), characterized by impairment in the arms and hands and to a lesser extent in the legs. The brain's ability to send and receive signals to and from parts of the body below the site of trauma is affected but not entirely blocked. This syndrome, usually the result of trauma, is associated with damage to the large nerve fibers that carry information directly from the cerebral cortex to the spinal cord. These nerves are particularly important for hand and arm function. Symptoms may include paralysis and/or loss of fine control of movements in the arms and hands, with relatively less impairment of leg movements. Sensory loss below the site of the spinal injury and loss of bladder control may also occur, with the overall amount and type of functional loss dependent on how severely the nerves of the spinal cord are damaged.

Each individual has their own tolerance for coping, also depending on the demands, of his/her daily life. What might satisfy one person, may not satisfy another. On the contrary, what might seem unbearable to some, might seem reasonable to others. As for me, I would rather loose the use of my legs than to loose the use of my trunk (stomach included), arms and neck. Imagine what you can do with almost having no use of your arms and no use of your trunk. Besides it being so challenging, there seems to be no comfortability. With a stiff trunk, it’s difficult just to sleep, a small wrinkle or a seam in your clothing can cause so much pain.

For almost three years, each time I take a step it causes a very painful spasticity in my back and I avoid lying on my back because it causes the same problem. I lie down on one side mainly, my right side. I’m always in that position and can’t do much, even watching television is a challenge! This is the only way I can use my laptop, I use it sideways and when my right leg becomes numb and weak and painful like now, I have to wait until it goes away and I’m forced to lie on the left or my back causing a different type of pain but there’s usually no other choice. My back and my left side is ubestiff and without any feelings but if I lay on it, causes it to become spastic and the pain is unbearable oftentimes causing me to vomit. I wish that I can be a candidate for rhizotomy which is the cutting of the cold air, it causes difficulty breathing, I’ve been taken to the ER for this many times although the last few years that is causing my muscles to become spastic. Unfortunately, I can’t be a candidate. It is located on the left side of my head. This was proven during my last surgery at the North Shore University Hospital in Manhassett. I laid on my back for many hours during surgery and when I woke up, I was screaming to my lungs because of severe pain in my back. Spasticity is a 
condition where muscles are continuously tight or stiff, sometimes causing a person a great deal of pain. I can only  describe the pain of spasticity as in like a wash cloth being wrung and you have some part of your meat wrapped inside that cloth being twisted. To me it is over the top pain!! Out of all the pain I have to deal with, this has been the, OMG!! There has been no medication that alleviates it so far. Besides having to deal with the SM symptoms that we, sufferers are all aware of , in addition to central pain, dealing with autonomic dysfunction can be frustrating. I get cold sweats, hot flashes, change in temperature could be grueling, 24/7 nausea and chills. If I breath in cold air, it causes difficulty breathing, I’ve been taken to the ER for this many times although the last few years, I had been spared, so maybe the dysphagia is better. If I was exposed to heat, my body swells instantly and with cold wind that touches your skin, it's like an acid burning pain and if the cold is there to stay, it's like digging through your bones. Bladder dysfunction also adds to the aggravation. Most likely I use the bathroom  about 30-40 times a day. With central pain, I can’t wear any of my nice clothes anymore because they hurt me and causes me to swell up so they’re replaced by soft, loose clothing usually made of cotton or flannel, always wearing pajamas. (If I wore my normal pants that have a waistline and zipper, because of nerve damage and or Gastroparesis, it causes my stomach to get big like I’m nine months pregnant) Anything that binds, it hurts and causes swelling. When a fabric is skin tight, it is very uncomfortable, in a few minutes, it becomes even more tight because of the swelling. The same as with shoes. I have so many clothes that are mostly fitting and I definitely cannot afford to replace them. I have a few maternity dresses that  I would wear to go out and at home, one would always catch me in my pajamas. I think the yoga pants would be comfy, but with the amount of money that we get from SSDI there is definitely no budget for clothing!

Regardless of all of the symptoms that I just shared, I am more accepting of all such challenges. As with looks, I used to keep myself trim and toned by exercising on a regular basis. As with money and material possessions, having a job or passion for something you want to do that gives meaning to your life, the ability to fit in to society, being able to drive that gives you a certain independence, 
keeping a healthy hobby that can promote a feeling of self-worth, these have been long gone from my list. I can’t have them so I have to divert away from things I can’t do or have. I turn to Him for I comfort and kindness. Since I can’t go to church, our Pastor comes and visits with me every Thursday and explains further what I read from the bible. There are times where I feel I'm loosing hope but it helps me to believe that we should not forget God no matter what we face here on earth.

Conversely, as with quads or paraplegics, having a wheelchair accessible vehicle offers them the freedom to travel and go out much more easily, some quadriplegics have the ability to drive, mostly using adaptive equipment. I think of this and this is the one that is most painful for me to think right now. I can now easily say, it’s okey to be paralyzed but to be paralyzed and not be able to sit up in 
your own wheelchair and drive it, is a double jeopardy. This is the most frustrating for me right now because of not being able to sit up. I think I could act like Frida in that movie of the same title where they brought the bed wherever she goes!

You can't always control the course of your life, despite all the best planning in the world. 
But the best thing is God will not leave us alone. I tell you honestly, I don't know how I got to this 
point, but I know for sure I have someone watching over me.