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.
Thursday, August 4, 2011
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.
Saturday, April 2, 2011
Another Challenge is Back
The last three days had been very difficult, in addition to the stomach problems, my shoulder and chest area, including the root of my arm had been excruciatingly painful, neuropathic pain is a living hell. I had been crying everyday, most of the day. I know that the pain comes from me using my arms, it's all the muscles engaged in using my arms.
I can't help but worry about things I can't do that needs to done at home. Yes, thankful everyday that I get help but with the worsening of my arms, there's more ad more things that needed to be done and Dora doesn't have all the time to do it for me. Simple tasks like my mail, my bills, application forms that needed to be filled out. I can't use my hands to write anymore. I'm hoping that it will heal again and not continue to degenerate.
Making love to Kevin is almost impossible. I can lie down and not participate!loll Poor guy. It's hard to use my arms and my legs.
I wonder how I will type in my computer when the time comes that I can't move my fingers anymore. About taking care of myself? It seems that everyday it gets closer and closer. I guess if others can, why can't I? haha. I guess with every situation we tend to adapt. It's human instinct. We can work it out, is what the Beatles say.
I can't help but worry about things I can't do that needs to done at home. Yes, thankful everyday that I get help but with the worsening of my arms, there's more ad more things that needed to be done and Dora doesn't have all the time to do it for me. Simple tasks like my mail, my bills, application forms that needed to be filled out. I can't use my hands to write anymore. I'm hoping that it will heal again and not continue to degenerate.
Making love to Kevin is almost impossible. I can lie down and not participate!loll Poor guy. It's hard to use my arms and my legs.
I wonder how I will type in my computer when the time comes that I can't move my fingers anymore. About taking care of myself? It seems that everyday it gets closer and closer. I guess if others can, why can't I? haha. I guess with every situation we tend to adapt. It's human instinct. We can work it out, is what the Beatles say.
Tuesday, March 22, 2011
Gatroparesis
Lately has been more difficult because of my stomach. What scares me is that it started with symptoms I had 14 years ago only it is more severe in a way that anything I eat my stomach gets in so much trouble, it's constant as compared before it was about maybe twice a week, maybe three the most.
It is hard to eat, I think of what to eat and when it's there and I start eating, I feel like throwing up. I don't have an appetite. I force myself to eat because I need it in order to take my meds.
I cut down again on Neurontin from 2400 to 1800 today. It maybe abrupt but I have to consider the condition of my stomach, I feel like I have thousands of cuts inside of it. It is paaaaiiinnnffullll!!!! I'm scared!!! I can't stand straight, I have to crunch my stomach because of the pain and there is pain in my back on the left side which I have no idea why.
For many years, I fought hard from not being able to walk in 2002 to walking about a couple of miles or a mile about three times a week but it makes me sad that lately, I have been spending more time being in bed. Being in the computer is a challenge because of my neck hands and arms including my eyes. Even sorting out my mail has become challenging. I try to walk my dog everyday even for a few meters, but today was very difficult because of the pain in my buttocks (has been a long problem causing ataxia)which I had fought for long. I cannot wait to get my new wheelchair. I got my powerchair in August of 2009 but this past month I went for a wheelchair evaluation because I will be given a different one to accomodate the decline in my condition. I can only sit for a few minutes, so I need a wheelchair that can recline more and with leg adjustment.
I am hoping that my condition will stop declining or even get better. It is not easy being in bed most of the time. It's spring and soon when the sun comes out I'm hoping that I'd be able to have a vegetable garden and an herb garden to pick herbs during days that I can cook!
It is hard to eat, I think of what to eat and when it's there and I start eating, I feel like throwing up. I don't have an appetite. I force myself to eat because I need it in order to take my meds.
I cut down again on Neurontin from 2400 to 1800 today. It maybe abrupt but I have to consider the condition of my stomach, I feel like I have thousands of cuts inside of it. It is paaaaiiinnnffullll!!!! I'm scared!!! I can't stand straight, I have to crunch my stomach because of the pain and there is pain in my back on the left side which I have no idea why.
For many years, I fought hard from not being able to walk in 2002 to walking about a couple of miles or a mile about three times a week but it makes me sad that lately, I have been spending more time being in bed. Being in the computer is a challenge because of my neck hands and arms including my eyes. Even sorting out my mail has become challenging. I try to walk my dog everyday even for a few meters, but today was very difficult because of the pain in my buttocks (has been a long problem causing ataxia)which I had fought for long. I cannot wait to get my new wheelchair. I got my powerchair in August of 2009 but this past month I went for a wheelchair evaluation because I will be given a different one to accomodate the decline in my condition. I can only sit for a few minutes, so I need a wheelchair that can recline more and with leg adjustment.
I am hoping that my condition will stop declining or even get better. It is not easy being in bed most of the time. It's spring and soon when the sun comes out I'm hoping that I'd be able to have a vegetable garden and an herb garden to pick herbs during days that I can cook!
Monday, March 21, 2011
Looking for More Patience
Yes, I'm looking for more patience, asking God for more patience. I know I can say it could be worse but to have such debilitating condition could really get into you but I just need more patience. Yes, I'm aware that there are people out there with much worse condition than I'm in and I realize that the more you complain and feel tired of it the harder it gets. I have to learn to take it easy, do what I can and things will be alright. If my body says don't go anywhere, I'll try not to go anywhere unless there is anything pressing like doctor's appointments. I try not to go to PT because it's very difficult to ride but my neurosurgeon in New York who is my no. 1 doctor recommends more PT, so I guess there's not much choice. For sure it will be better for me in the long run.
I would like to record my condition as of this point, this is not to complain just but to record my pain. I am tapering down on my Neurontin from 3600, I'm now down to 2400 Neurontin, 60 Ultram and 60 Cymbalta with 2mg Dilaudid as needed.
So as expected, my body is going through withdrawal, every inch is so painful and I have been getting swelling as well. Joints, upper back, shoulders, neck swelling and pain, including my breasts, very tender to the touch. When my arms are raised they're very painful. My feet are burning with acid!!! Don't know what to do with them. Joints are painful. At the present, it's very hard to get comfortable. When laying on my sides my arms easily get numb and when lying on my back, my buttocks get numb and the makes it a lot harder to walk. Also it's hard to breath when lying flat. There is no sitting at this point, I cannot bend my torso or my stomach, I mean I can for a few minutes and then after a few minutes, my stomach swells and the pain is aggravated and then I have to lie flat for the rest of the day and be in pain.
With eating, I don't have an appetite but I have to eat in order to take my medicine. Unlike before, I can have a banana and a yogurt and I can take my meds but not anymore. I have to have a meal to have less pain. Not that I won't have pain and swelling but somewhat less. It has been so difficult lately, Gastroparesis is getting harder and harder to manage. But like I said, I need to have more patience, it's a basic key in order to deal with this type of pain, constant nagging pain.
I'll keep asking for it. Ask the fairy to put some in my pocket.
I would like to record my condition as of this point, this is not to complain just but to record my pain. I am tapering down on my Neurontin from 3600, I'm now down to 2400 Neurontin, 60 Ultram and 60 Cymbalta with 2mg Dilaudid as needed.
So as expected, my body is going through withdrawal, every inch is so painful and I have been getting swelling as well. Joints, upper back, shoulders, neck swelling and pain, including my breasts, very tender to the touch. When my arms are raised they're very painful. My feet are burning with acid!!! Don't know what to do with them. Joints are painful. At the present, it's very hard to get comfortable. When laying on my sides my arms easily get numb and when lying on my back, my buttocks get numb and the makes it a lot harder to walk. Also it's hard to breath when lying flat. There is no sitting at this point, I cannot bend my torso or my stomach, I mean I can for a few minutes and then after a few minutes, my stomach swells and the pain is aggravated and then I have to lie flat for the rest of the day and be in pain.
With eating, I don't have an appetite but I have to eat in order to take my medicine. Unlike before, I can have a banana and a yogurt and I can take my meds but not anymore. I have to have a meal to have less pain. Not that I won't have pain and swelling but somewhat less. It has been so difficult lately, Gastroparesis is getting harder and harder to manage. But like I said, I need to have more patience, it's a basic key in order to deal with this type of pain, constant nagging pain.
I'll keep asking for it. Ask the fairy to put some in my pocket.
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