How I wish I had a Dragon Naturally Speaking gadget that works!!! It's too painful to use my arms and fingers to do any typing but I just don't have any choice, oh yes I do have an option, the choice of not typing!!!!But I had been needing for someone to talk to and this is my way of letting it out.
I know that it won't be long and the days when I am up are over. Even I will not have the liberty to use a wheelchair and roam around. There is a reason why my wheelchair has a controller in the back! I wouldn't mind having a horizontal angle for a view of everything, say goodbye to the upright position. If you want to be positive, it's better than not seeing at all. Same thing as when you say nothing is worse than being bedridden and not being able to do anything? Others would say, no, be
positive, at least you're alive! I think I will get to that later.
A few years ago, I found happiness in gardening and cooking. Now Syringomyelia has taken them away from me almost completely. I heard it from others that SM really attacks its sufferers at will.I think I fought a good battle for many years. (It doesn't matter if it counts to others or not, I just know I tried my best)My son told me that if it wasn't for my persistence, I would have been paralyzed earlier, Kev doesn't agree. I believe it because there is regeneration in nerves, an example is a person that had a stroke can have paralysis and if they are persistent in trying to rehabilitate themselves they could walk again. My brother who is a doctor once told me that I should minimize the use of my energy, save , save and save. On the contrary, I heard my doctor say, in reference to me, "She's up and about, she will do better in the long run". Thinking back, I might have overdone, but like I said before, I wanted to have a life. So if I may have shortened my walking years because I wanted to do things that I can still do at that time, then so be it.
In the book of Matthew, Chapter 6:25. It talks about God telling us not to worry about everyday life. I believe, but I still worry, I worry about so many things especially with what I am going through right now. Besides my condition being a big burden in my mind, I was bothered by some article in the newspaper that my partner had wanted me to read. It may be that he wanted to help, thanks to him but it's almost funny when people say this things because they have no clue what each and everyone of us go through. The article is entitled, Training the brain to Ignore Pain, not knowing that when you have a chronic pain it's totally different from someone who has pain or does get sick every now and then who can afford to lie down and take care of their pain when they do because it only happens once in a while. Not to someone who is in pain everyday for years!!! You become an expert at ignoring your pain. I worked for many years even though I had excruciating pain. Now when it's time to make dinner and my pain hasn't subsided, I can make a quick dinner even when I'm in a lot of pain,it's even hard to think what's the next thing to do because your pain is all over your body and not just one particular area. You learn to smile even you have stabbing, tugging, sharp or electric like pain that makes you nauseated. Life has to go on. But when you talk about your pain, to some people, you are just this weak individual that cannot put mind over matter!!!!lol I just laugh at it. They just don't realize that maybe I/we should teach people how to learn to live ignoring our pain!
Sometimes it's nice to be alone because you don't have to pretend there's nothing wrong when your bladder feels like it's being pulled out of it's place, you just want to tie it with a string and hold it up 24/7 or tie it around your neck, when your legs and feet feels very cold like they're covered in ice but burning or I simply call it the acid burning feeling that makes your hair all over stand up and as if someone is trying to skin your legs and pouring acid on your flesh at the same time, when your shoulder and upper back feels like you're being stabbed in every inch at the same time pulling,tugging and drilling inside so deep and someone pushing you down and you have to fight to remain upright, when your lower back and buttocks feels like it is broken in small pieces and burning inside so deep, sharp pain inside like an electric drill stabbing and crushing you all over, when you're trying to walk even though your pain is up a notch over a 12, feels like your body is a long piece of steel but someone is trying to bend it. The only way to relieve it is to be in bed. I could go on and on and describe the pain that goes on all over my body but it's not going to change anything.
I think I'm in an emotionally vulnerable position right now. Things will change. Someday it will be easier for me to be thankful for the last seven years that were given to me that I surely enjoyed. I will not try to change anything. It was a different life but I tried to embrace it. I thank God and my doctors for those years. The past seven years were the best gift of my life.
Wednesday, November 16, 2011
Wednesday, November 2, 2011
It's Been Difficult
Since June of this year, it has been so difficult. It seems like my condition has been spiraling down everyday. The only times that I feel better is after a doze of Dilaudid. Now doctor's advice is to limit or stop taking it. I totally understand. I avoid taking it myself.
The left side of trunk had been extremely stiff. It is obvious there is no signal coming from the brain, not getting through the spinal cord. I had gone through P.T. but to no avail. I have been using a back mas sager which helps for a very short time and then goes back to being very stiff and hard after I sit,stand or walk. I am really losing hope. I don't have happiness anymore. Before, there were things I am thankful about. There were things I can do. Some people say, it could be worse. What is worse than being alive and not be able to do anything? Being dead, right. I'm sure that this feeling will get better. There has been a change in my condition, it is worse, but when total paralysis sets in and you know that there is nothing that can be done and you've used up all your resources, ACCEPTANCE will set in.
Sometimes I wish that we have the right to end our suffering. I don't think I have any patience left. I know this feeling is temporary. I feel so down, so sad but you almost have to keep it to yourself. I cry mostly when I'm alone. No matter how I try, it's hard not to cry and be sad about it. I try to be courageous about it and be tough like my Dad, but I just can't. Yes, I tell my partner my pain, I never tell anything to my son who was in Iraq and now in Ft. Hood. The only person that I cry to is my Mom although she's not always a good listener, it's alright as long as I can vent. It helps to be able to vent although it seems like a torture to someone on the receiving end.
Things maybe difficult now, but when I get settled in my wheelchair permanently, I know things will change.
The left side of trunk had been extremely stiff. It is obvious there is no signal coming from the brain, not getting through the spinal cord. I had gone through P.T. but to no avail. I have been using a back mas sager which helps for a very short time and then goes back to being very stiff and hard after I sit,stand or walk. I am really losing hope. I don't have happiness anymore. Before, there were things I am thankful about. There were things I can do. Some people say, it could be worse. What is worse than being alive and not be able to do anything? Being dead, right. I'm sure that this feeling will get better. There has been a change in my condition, it is worse, but when total paralysis sets in and you know that there is nothing that can be done and you've used up all your resources, ACCEPTANCE will set in.
Sometimes I wish that we have the right to end our suffering. I don't think I have any patience left. I know this feeling is temporary. I feel so down, so sad but you almost have to keep it to yourself. I cry mostly when I'm alone. No matter how I try, it's hard not to cry and be sad about it. I try to be courageous about it and be tough like my Dad, but I just can't. Yes, I tell my partner my pain, I never tell anything to my son who was in Iraq and now in Ft. Hood. The only person that I cry to is my Mom although she's not always a good listener, it's alright as long as I can vent. It helps to be able to vent although it seems like a torture to someone on the receiving end.
Things maybe difficult now, but when I get settled in my wheelchair permanently, I know things will change.
Thursday, August 25, 2011
Severe Arm Pain, Severe Headache, Scary Feeling
It's been a while since I posted last, avoiding typing as usual bec. of severe arm pain.
I'm in Daly City to come see my Dad who's been asking when am I going to visit. I was going to take the bus but too much stress involved if I did. So I decided to ask my nephew to come pick me up. Again, never in my life did it cross my mind that I would be asking for rides in my 40's!! Driving is the biggest loss for me. I'm hoping that after surgery, I could drive.
I'm scheduled for an anterior cervical discectomy and fusion on Sept. 15, 2011 at The Chiari Institute in Long Island, New York. I'm really hoping that it will change my life to somewhat brighter and a little more fun than what it is now.
Right now everything I do using my hands and arms hurt so much, like my arms are separated from my body. The headaches are weird, feels like it is my brain that hurts, only on the left side. Pressure in the ear is annoying like drilling inside my ear. The pain around the root of my arms, shoulders, upper back, chest area makes me feel nauseated. The left side of my back gets more and more numb and hard and it feels like it has been getting higher almost to my shoulders and it feels really weird. It gets harder to walk each time I try. I still haven't been able to sit. Not sure if the surgery will do anything for this. Not to be negative but I know this is coming from my spinal cord and not from stenosis or kyphosis or whatsoever. But I guess we have to be optimistic and just hope that the surgery will help!
The last two months have been kind of miserable, spending more time in bed almost everyday. After breakfast it's back to bed time, after lunch it's back to bed time. Then if Dora doesn't make the dinner, I make easy dinner for us, scoot with the dog and then bedtime. I want to do a little more than that. I have been hiding from friends who have been inviting me to go out with them. It's hard to explain to them what I can't do because I look so normal.
Until next post, my eyes are dry and tired. I will sleep good tonight for sure.
I'm in Daly City to come see my Dad who's been asking when am I going to visit. I was going to take the bus but too much stress involved if I did. So I decided to ask my nephew to come pick me up. Again, never in my life did it cross my mind that I would be asking for rides in my 40's!! Driving is the biggest loss for me. I'm hoping that after surgery, I could drive.
I'm scheduled for an anterior cervical discectomy and fusion on Sept. 15, 2011 at The Chiari Institute in Long Island, New York. I'm really hoping that it will change my life to somewhat brighter and a little more fun than what it is now.
Right now everything I do using my hands and arms hurt so much, like my arms are separated from my body. The headaches are weird, feels like it is my brain that hurts, only on the left side. Pressure in the ear is annoying like drilling inside my ear. The pain around the root of my arms, shoulders, upper back, chest area makes me feel nauseated. The left side of my back gets more and more numb and hard and it feels like it has been getting higher almost to my shoulders and it feels really weird. It gets harder to walk each time I try. I still haven't been able to sit. Not sure if the surgery will do anything for this. Not to be negative but I know this is coming from my spinal cord and not from stenosis or kyphosis or whatsoever. But I guess we have to be optimistic and just hope that the surgery will help!
The last two months have been kind of miserable, spending more time in bed almost everyday. After breakfast it's back to bed time, after lunch it's back to bed time. Then if Dora doesn't make the dinner, I make easy dinner for us, scoot with the dog and then bedtime. I want to do a little more than that. I have been hiding from friends who have been inviting me to go out with them. It's hard to explain to them what I can't do because I look so normal.
Until next post, my eyes are dry and tired. I will sleep good tonight for sure.
Thursday, August 4, 2011
Trying So Hard To Be Positive
My condition has been going downhill day by day although I have been trying so hard to stay positive. I never mentioned anything to my son about my worsening condition. He has many other things to worry about and the last thing I would want is to add to his burden.
I try to make easy meals and healthy at the same time. I like to broil fish and vegetables. For breakfast, I usually eat banana and yogurt. Sometimes I ask Dora to cook enchilada and I eat it for many days!
I haven't posted for a while just because of the weakness of my extremities. I was taken to the ER last Wednesday because of weakness and numbness on the left side of my body. It is a very scary feeling when you feel your body becoming hard and weak, I thought I was going to be paralyzed!! My left side has been bothering me even more, it's weird because it used to be the right side that was weaker. It's disappointing that other people judge you. The doctor asked me to push and I couldn't push hard and she said, I know you can!! This disease could give you pain not only in the body but a heartache because it is an invisible disease that people tend to think you are exaggerating.
Right now, when I use my arms as for anything, right away it's hard to breath, I feel weaknesss in my chest area and the pain is excruciating. It feels like breathing from a very small sieve!!All my joints, including knuckles of my fingers are painful. Ankles, knees, root of my arms, elbows and wrists are all very painful and arms and legs are very weak. The weakness comes from inside. Right now, it is hard to stand up for a few minutes, my body seems like it is broken in the waist and buttocks area and my arms feel like they are going to fall off.
I am getting so close to being able to accept all of these but one thing that is going to be very difficult is to become bedridden, I wish to be able to get into a wheelchair. With the symptoms I'm having, it is very difficult even at this time to be in a wheelchair. After a while, my body needs to be back to bed! After walking a
few minutes, I'm already tired, the same thing with using my arms!!
I heard from my Neurosurgeon on August 1st. It made me very happy and more hopeful again. He wants me to have a cervical MRI and an EMG of the upper extremities and then depending on the result, I would have to go and see him in New york.
I immediately asked for an appointment to see a local Neurosurgeon, unfortunately, I was scheduled on Sept. 1 so I will have to check in everyday for cancellations.
Hoping for the best.
I try to make easy meals and healthy at the same time. I like to broil fish and vegetables. For breakfast, I usually eat banana and yogurt. Sometimes I ask Dora to cook enchilada and I eat it for many days!
I haven't posted for a while just because of the weakness of my extremities. I was taken to the ER last Wednesday because of weakness and numbness on the left side of my body. It is a very scary feeling when you feel your body becoming hard and weak, I thought I was going to be paralyzed!! My left side has been bothering me even more, it's weird because it used to be the right side that was weaker. It's disappointing that other people judge you. The doctor asked me to push and I couldn't push hard and she said, I know you can!! This disease could give you pain not only in the body but a heartache because it is an invisible disease that people tend to think you are exaggerating.
Right now, when I use my arms as for anything, right away it's hard to breath, I feel weaknesss in my chest area and the pain is excruciating. It feels like breathing from a very small sieve!!All my joints, including knuckles of my fingers are painful. Ankles, knees, root of my arms, elbows and wrists are all very painful and arms and legs are very weak. The weakness comes from inside. Right now, it is hard to stand up for a few minutes, my body seems like it is broken in the waist and buttocks area and my arms feel like they are going to fall off.
I am getting so close to being able to accept all of these but one thing that is going to be very difficult is to become bedridden, I wish to be able to get into a wheelchair. With the symptoms I'm having, it is very difficult even at this time to be in a wheelchair. After a while, my body needs to be back to bed! After walking a
few minutes, I'm already tired, the same thing with using my arms!!
I heard from my Neurosurgeon on August 1st. It made me very happy and more hopeful again. He wants me to have a cervical MRI and an EMG of the upper extremities and then depending on the result, I would have to go and see him in New york.
I immediately asked for an appointment to see a local Neurosurgeon, unfortunately, I was scheduled on Sept. 1 so I will have to check in everyday for cancellations.
Hoping for the best.
Friday, June 10, 2011
Early Signs of Paralysis
My left mid back continues to get stiff and thick besides continued Physical Therapy. The pain is aggravated by walking, sitting and even when I'm reclined. Anywhere where it has to support my body.
The pain includes the muscles in my stomach. My legs continue to get numb and the root of my arms are still the same. They become very painful when I use my arms esp with activities that involves lifting them up or to hold something. For that reason I haven't been able to read a book for a very long time now. It doesn't help that my neck has all kinds of problems like spondylosis and stenosis. I can't look up or down without getting hurt so much. The only way I could read a book or watch television without getting hurt is by watching or reading from the ceiling which I don't have. (wait a minute, no I can't lie on my back too long, either ). With a computer, I had to buy a laptop because it's impossible for me to use my desk top. I have to flip the laptop to it's side, lie down on my right so I can use the keyboard without having to look up and down. But still, my computer usage is also limited because of my eyes and my hands. They all get tired pretty quick. Then I pay for it the next day.
Today I have to stay home while the rest of the family went to LA to attend my niece's Kristine's UC Irvine graduation and Kev has to go to Santa Cruz for his niece's graduation. I really have to stay in bed because of my back being sooo stiff, it's like a rock!! I couldn't think of the most frustrating thing than to be in bed when you are a person who wants to do so many things.
You realize after complaining and whining that it's almost always easier to come to an acceptance to make it easier for you. I called my dog Frodo to join me, have some snacks (in bed!) and life is good again.
The pain includes the muscles in my stomach. My legs continue to get numb and the root of my arms are still the same. They become very painful when I use my arms esp with activities that involves lifting them up or to hold something. For that reason I haven't been able to read a book for a very long time now. It doesn't help that my neck has all kinds of problems like spondylosis and stenosis. I can't look up or down without getting hurt so much. The only way I could read a book or watch television without getting hurt is by watching or reading from the ceiling which I don't have. (wait a minute, no I can't lie on my back too long, either ). With a computer, I had to buy a laptop because it's impossible for me to use my desk top. I have to flip the laptop to it's side, lie down on my right so I can use the keyboard without having to look up and down. But still, my computer usage is also limited because of my eyes and my hands. They all get tired pretty quick. Then I pay for it the next day.
Today I have to stay home while the rest of the family went to LA to attend my niece's Kristine's UC Irvine graduation and Kev has to go to Santa Cruz for his niece's graduation. I really have to stay in bed because of my back being sooo stiff, it's like a rock!! I couldn't think of the most frustrating thing than to be in bed when you are a person who wants to do so many things.
You realize after complaining and whining that it's almost always easier to come to an acceptance to make it easier for you. I called my dog Frodo to join me, have some snacks (in bed!) and life is good again.
Tuesday, May 31, 2011
Embrace Fear and Let Go
Today I ask God to heal me once again, touch me and I will be healed and I'm going to wait for that day if it's not today. A few believers say, you have to believe that you have been healed and you will. But what if you've done all that and you're still in pain? And every single thing you do, you suffer from pain like most Syringomyelia sufferers?
Unbelievable as it may seem, but I'm in it!! As far as I can remember I have had many challenges because of Chiari and Syringomyelia. Today is one of those days where my body feels like it's been forcibly separated into two pieces, upper body and lower body with a buttocks that's been broken in many pieces!! You're constantly holding your stomach muscles up as to keep your bladder up or it will drop on the ground. Your legs feels like their nerves are too short and they're being stretched to cover the whole area and they're getting numb because of that. The feet constantly feel ice cold in the cold season like acid was poured over them and during the warm season they feel constantly swollen with heat.
As I often say, there are a lot of things I want to do besides things I should be doing but it has been many years that whatever I do I would be in pain for days, weeks, months or even years. Depending on what I did. Wish I could write on my blog everyday but it's impossible because today I am typing and for sure it will hurt my hands and arms again like it always does.
There used to be this fear, fear inside of me that is almost blinding. I felt panicked or worried. To a point where I may have been bitter because I was afraid of change, afraid to leave my son to fend for himself. Fear of leaving the life that we may have known. But as years passed, with my health still deteriorating, I began to dissolve the power of fear by embracing it and by embracing it, I had learned to let go. That impenetrable barrier of fear no longer exists. In it's place is the change that my heart has been longing for, unfortunately not by choice but being able to face the reality of how you are going to live without any spice in life. The only reason why you're alive is because you're still breathing. You have no choice.
Unbelievable as it may seem, but I'm in it!! As far as I can remember I have had many challenges because of Chiari and Syringomyelia. Today is one of those days where my body feels like it's been forcibly separated into two pieces, upper body and lower body with a buttocks that's been broken in many pieces!! You're constantly holding your stomach muscles up as to keep your bladder up or it will drop on the ground. Your legs feels like their nerves are too short and they're being stretched to cover the whole area and they're getting numb because of that. The feet constantly feel ice cold in the cold season like acid was poured over them and during the warm season they feel constantly swollen with heat.
As I often say, there are a lot of things I want to do besides things I should be doing but it has been many years that whatever I do I would be in pain for days, weeks, months or even years. Depending on what I did. Wish I could write on my blog everyday but it's impossible because today I am typing and for sure it will hurt my hands and arms again like it always does.
There used to be this fear, fear inside of me that is almost blinding. I felt panicked or worried. To a point where I may have been bitter because I was afraid of change, afraid to leave my son to fend for himself. Fear of leaving the life that we may have known. But as years passed, with my health still deteriorating, I began to dissolve the power of fear by embracing it and by embracing it, I had learned to let go. That impenetrable barrier of fear no longer exists. In it's place is the change that my heart has been longing for, unfortunately not by choice but being able to face the reality of how you are going to live without any spice in life. The only reason why you're alive is because you're still breathing. You have no choice.
Monday, May 23, 2011
Let Me Think!!!!
This pain won't allow me to think at all!!!! This is torture, I pray to God to help me be a good Christian and someday be saved and go to heaven where there is no pain and suffering!!!
At times, I feel like I don't have anymore patience to live with this pain but I have no choice, I'm still alive, you lose more being negative so be positive!!!
Last Saturday, Kev and I left for Santa Cruz at 9:15 AM, stopped by Shopper's Corner, a gourmet grocery close to Kev's Mom's place. Then went to his Mom's. I sat for a little and decided to help after a few minutes. Kev moved the tan bark from the front yard into the backyard using the recycle bin and I helped his Mom rake it to move it around and then Kev and I stapled the plastic liner. After we were done in the backyard, Kev mowed her front lawn and his sister started weeding and I helped weed a little and swept a little, I wasn't feeling good anymore but was quiet about it. We finished the work in about 3 hours. Betty, Kev's Mom was very happy.
Kev and I stopped by to have lunch at Camino Real Mexican Restaurant, an old authentic Mexican Restaurant in Watsonville for a late lunch or early dinner. He had Bistek Ranchero and I had Chicken Enchilada. It was so good as always!!
We went to our hotel and took a shower and rested. We were scheduled to meet with his Mom and sister for dinner at 7:45 PM but cancellled because I was throwing up and too sick to go. I was in horrible pain. We just watched a documentary and went to bed. Kev was asleep before I knew.
The next day, Kev left early to the mountains to ride his bike. I woke up late, Frodo woke me up. We went for a long walk. Frodo was so excited to go for a walk there. He's always excited to do anything there but not in Sacramento.
Kev came back around 10 and while he was showering, I kept getting this call which I always thought was a sales call. I didn't answer it and next thing my computer started to ring. It was my son calling me on Skype, he told me he's been calling my phone. We taked for almost 30 minutes. It was about 9PM there when we were talking and Sgt. Cam came to Russ' room to ask for help. Which means he can be called to work anytime, he hardly sleeps. I felt bad, between my pain and missing my son and his situation there, I could just cry and cry and cry and I did!!
We went to check surf spots, stopped by his Mom's and went to Walnut Blvd Cafe in downtown for late breakfast. He had Huevos Rancheros and I had avocado, mushroom and cheese scramble and a fruit bowl. We went around downtown. I bought cards for friends, looked for humorous cards but not humorous enough for my son. We went back to the car but I asked Kev if I can buy a couple of things at Trader Joe's, so I did. We left for Sacramento and we got home around 6:30 PM.
I knew it was going to be tough to cook, but I couldn't find anything easy to make. I made past using the Pampano fish that I thawed out and used the broccollini that I purchased at Trader Joe's. I was very tired. I knew I snored that night.
At times, I feel like I don't have anymore patience to live with this pain but I have no choice, I'm still alive, you lose more being negative so be positive!!!
Last Saturday, Kev and I left for Santa Cruz at 9:15 AM, stopped by Shopper's Corner, a gourmet grocery close to Kev's Mom's place. Then went to his Mom's. I sat for a little and decided to help after a few minutes. Kev moved the tan bark from the front yard into the backyard using the recycle bin and I helped his Mom rake it to move it around and then Kev and I stapled the plastic liner. After we were done in the backyard, Kev mowed her front lawn and his sister started weeding and I helped weed a little and swept a little, I wasn't feeling good anymore but was quiet about it. We finished the work in about 3 hours. Betty, Kev's Mom was very happy.
Kev and I stopped by to have lunch at Camino Real Mexican Restaurant, an old authentic Mexican Restaurant in Watsonville for a late lunch or early dinner. He had Bistek Ranchero and I had Chicken Enchilada. It was so good as always!!
We went to our hotel and took a shower and rested. We were scheduled to meet with his Mom and sister for dinner at 7:45 PM but cancellled because I was throwing up and too sick to go. I was in horrible pain. We just watched a documentary and went to bed. Kev was asleep before I knew.
The next day, Kev left early to the mountains to ride his bike. I woke up late, Frodo woke me up. We went for a long walk. Frodo was so excited to go for a walk there. He's always excited to do anything there but not in Sacramento.
Kev came back around 10 and while he was showering, I kept getting this call which I always thought was a sales call. I didn't answer it and next thing my computer started to ring. It was my son calling me on Skype, he told me he's been calling my phone. We taked for almost 30 minutes. It was about 9PM there when we were talking and Sgt. Cam came to Russ' room to ask for help. Which means he can be called to work anytime, he hardly sleeps. I felt bad, between my pain and missing my son and his situation there, I could just cry and cry and cry and I did!!
We went to check surf spots, stopped by his Mom's and went to Walnut Blvd Cafe in downtown for late breakfast. He had Huevos Rancheros and I had avocado, mushroom and cheese scramble and a fruit bowl. We went around downtown. I bought cards for friends, looked for humorous cards but not humorous enough for my son. We went back to the car but I asked Kev if I can buy a couple of things at Trader Joe's, so I did. We left for Sacramento and we got home around 6:30 PM.
I knew it was going to be tough to cook, but I couldn't find anything easy to make. I made past using the Pampano fish that I thawed out and used the broccollini that I purchased at Trader Joe's. I was very tired. I knew I snored that night.
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