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!
Tuesday, March 22, 2011
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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