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.
Monday, May 23, 2011
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.
Wednesday, February 16, 2011
Just came back from the Spine Clinic and saw Dr. Meuselar. Did a full neurulogical exams and he told me I need surgery, he might insert a tubing into the spinal cord but he would like to confirm that after I get a cervical MRI.
I could feel that it's coming so close,paralysis I mean. Everything is difficult to do. It's not visible but I am losing tolerance to all this pain. I want to give up moving, because mobility is getting more and more limited and the pain with every movement is excruciating especailly in the stomach and mid back area. My torso cannot support my body and my neck cannot support my head?? I'm so tired of being in pain!!!!
I could feel that it's coming so close,paralysis I mean. Everything is difficult to do. It's not visible but I am losing tolerance to all this pain. I want to give up moving, because mobility is getting more and more limited and the pain with every movement is excruciating especailly in the stomach and mid back area. My torso cannot support my body and my neck cannot support my head?? I'm so tired of being in pain!!!!
Friday, January 21, 2011
A month vacation in North Shore of Oahu at Christmas Time
The familiarity of life in the North Shore of Oahu for Kevin and I started on Dec. 4, 2010, we arrived at about 1p.m. Hawaii time. We met one of the few remaining World War II veterans who flew with us in the same plane, who came for the anniversary of Pearl Harbor. A man in his late 80's in such great shape with such confidence, talked to us about what he did during the war. From the airport we rented a car and immediately drove to our rented place in North Shore. In order to get to it, is a stairs on the side of the house. From the balcony is a sliding door that takes you to the studio, stepping inside takes you to living room area with sofa and chairs that is sort of old but very comforable. There is a television that can be turned to face the bedroom area behind the sofa. On one corner nook is a small dining table, next to the kitchen and then the bathroom. The place was gorgeous, it was a nice beach house but not that neat for the two neat freaks of us!! So we cleaned as soon as we got there. Kevin was happy when it was done, he readily went to surf. The smile on his face was the smile of a little boy so content, all tension of corporate job gone, he walked past the downstairs balcony and I can see the sand beneath his feet, he was carrying his surfboard in one hand. That was the happiest I have seen him over the years. I watched him from the balcony and my eyes followed him as the coolness of the breeze coming from the ocean touched my skin giving me an instant relief and feeling of relaxation.
There, I enjoyed cooking while I watched the surfers at Rocky Point.
There, I enjoyed cooking while I watched the surfers at Rocky Point.
Friday, December 3, 2010
Scary Symptoms
At least I feel paralysis coming. It could be worse to where I could have been instantly paralyzed.
At this point I'm ready for it. I'm thinking of not trying to save myself. Not to opt for another surgery that might slow the progression, because to me, it's been years of torture! Many times I couldn't do it anymore. I have been patient but sometimes, I'm running out,running out of patience, I just constantly pray for more. I don't want to live each day in pain for many more years. I hope that this is understandable to many.
This place is where I can vent, I can vent without hurting anyone, without pulling someone down, without making me feel like an idiot afterwards, making me feel like someone else's pain is worse than mine or I'm not strong enough, etc, etc. Once, a friend of mine said, "Others are in more pain than you do, you're luckier than some people out there". My brother Alex always says " Try to divert your attention and not think about your pain". It's so true, I wish that I can always think that way, but it doesn't make my pain go away. Maybe with a slight pain you can forget but with excruciating pain, it doesn't let you think.
Altering your life due to severe chronic pain is not an option for any human being. Having an active mind in a progressively less active body could be very frustrating. I deal with it on a daily basis. I used to be a very active person. Staying positive can seem to get old after a while. The scary symptoms seem to cloud over your hopes of recovery. At this point in time, it feels to me like paralysis can happen any time. I just know there is no getting around it. The door is open, I'm ready.
At this point I'm ready for it. I'm thinking of not trying to save myself. Not to opt for another surgery that might slow the progression, because to me, it's been years of torture! Many times I couldn't do it anymore. I have been patient but sometimes, I'm running out,running out of patience, I just constantly pray for more. I don't want to live each day in pain for many more years. I hope that this is understandable to many.
This place is where I can vent, I can vent without hurting anyone, without pulling someone down, without making me feel like an idiot afterwards, making me feel like someone else's pain is worse than mine or I'm not strong enough, etc, etc. Once, a friend of mine said, "Others are in more pain than you do, you're luckier than some people out there". My brother Alex always says " Try to divert your attention and not think about your pain". It's so true, I wish that I can always think that way, but it doesn't make my pain go away. Maybe with a slight pain you can forget but with excruciating pain, it doesn't let you think.
Altering your life due to severe chronic pain is not an option for any human being. Having an active mind in a progressively less active body could be very frustrating. I deal with it on a daily basis. I used to be a very active person. Staying positive can seem to get old after a while. The scary symptoms seem to cloud over your hopes of recovery. At this point in time, it feels to me like paralysis can happen any time. I just know there is no getting around it. The door is open, I'm ready.
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