Everyone has an opinion or a suggestion as to what I should try to cure this disease. Or they have an idea, about what they think I should be doing instead of what I have been doing. Its bad enough that I have to cope with the fact that I have lost control of my own body, somewhat. Its even more frustrating staying civil and kind to strangers that offer their unsolicited advice.
Seriously, I doubt eating "wheat grass" is going to miraculously cure me. I don't doubt it may help some, but it is not the cure.
How do the others with this awful disease cope with the loss of control? Not being able to walk, go places, alone or without assistance? Taking breaks in my car when shopping, I can't make it to more than one store without a break in between. Its how I cope with the pain. Sometimes I can make it to only one store in one day. I refuse to lay down and accept that I cannot move, I push myself beyond the point I think most push themselves, those who do and do not have any sort of disease that limits their abilities.
My sleep is affected by insane pain, and during the day it strikes me down, but I continue. I have zero pain relief, except taking prednisone. At this point I have to back off, I have gained so much weight that its no longer beneficial for me. Stopping the prednisone I have lost almost 9 pounds in a very short time. I feel that I need some control, at least with my weight.
Every day is a battle, to fight the inevitable, the pain that strikes me and challenges my spirit and ability to continue to enjoy my life.
I REFUSE to allow this disease to take me down.
Wednesday, February 4, 2015
Sunday, January 25, 2015
Can't believe so many years have gone by
It was Christmas morning 2002 that I woke up and knew something was wrong. That was 12 years ago. Its been a battle ever since. RA has taken up so much of my time, energy and thoughts.
I took a break from meds for a while. Just to give my body a rest. I also went back to see my original rheumatologist a few months ago.
I also found a new general doctor, who is paying attention. I've had chronically low vitamin D for many, many years. I take large doses of vitamin D, and there is no change, this has been going on for about 9 years. SO my original rheumatologist mentions seeing an endocrinologist. I saw my general doctor again, and I tell him my rheum would like me to go see an endocrinologist. He looks at my chart and brings up the fact that I have medullary sponge kidneys, and says that could be the reason why I have such low vitamin D. WOW, nobody has thought of that, or mentioned it. So I see this new doctor tomorrow. We shall she what he says, and I've been warned he's a bit odd. Hooray, I'm so excited, another doctor! hahaha!
I don't quite feel like I'm living a nightmare, but there is some serious bargaining and juggling of thoughts going on in my head all the time. I try not to go too far ahead in time, and think about what my life is going to be like then. There is no quick fix, no magic pill as of yet. I have hope they will find a cure, but until then life goes on. I have to be able to wake up and function, even if that means I need an electric scooter to get around.
Its amazing how before this disease, I never thought twice about my body and its simple functions like walking. We take so much for granted, and we never really think about getting sick and losing the ability to walk.
I took a break from meds for a while. Just to give my body a rest. I also went back to see my original rheumatologist a few months ago.
I also found a new general doctor, who is paying attention. I've had chronically low vitamin D for many, many years. I take large doses of vitamin D, and there is no change, this has been going on for about 9 years. SO my original rheumatologist mentions seeing an endocrinologist. I saw my general doctor again, and I tell him my rheum would like me to go see an endocrinologist. He looks at my chart and brings up the fact that I have medullary sponge kidneys, and says that could be the reason why I have such low vitamin D. WOW, nobody has thought of that, or mentioned it. So I see this new doctor tomorrow. We shall she what he says, and I've been warned he's a bit odd. Hooray, I'm so excited, another doctor! hahaha!
I don't quite feel like I'm living a nightmare, but there is some serious bargaining and juggling of thoughts going on in my head all the time. I try not to go too far ahead in time, and think about what my life is going to be like then. There is no quick fix, no magic pill as of yet. I have hope they will find a cure, but until then life goes on. I have to be able to wake up and function, even if that means I need an electric scooter to get around.
Its amazing how before this disease, I never thought twice about my body and its simple functions like walking. We take so much for granted, and we never really think about getting sick and losing the ability to walk.
Being forced to slow down
I cannot deny that I am greatly annoyed with having to slow down this much. Nothing wrong with my mind, and I luckily do not suffer from any type of depression. Having said that, I also cannot deny that I am feeling kind of sorry for myself. It will pass and I will adjust to this new normal.
I adjusted back in 2003 when I went from being super mom, to not being able to move. It was actually Christmas 2002 when it hit me, feels like it happened overnight. I had to adjust then, and it was really hard. I can still recall how I felt inside, and certain movies and television shows I was watching, suffering in silence. My kids were still young, and I didn't want to scare them. It was like I was taken by storm, my entire life was swept up and taken out to sea, never to return. I guess this recent setback with my feet and ankles will take me time to adjust to, but I don't like not being able to get out of the house on my own, and I need to purchase a little electric cart to get around.
Having to sit and/or lay down with my feet up is like torture. I think of the things I want to be doing, and I can feel my blood pressure raising. Sometimes I imagine myself hiking to the top of a mountain at sunset, and imagine the sun shining and feeling the warmth.
I can't always control the way I feel about this, and is why I at times feel sorry for myself. I get annoyed, irritable, and short tempered.
My husband is the RA champ, he really is wonderful. He is always very positive and matter of fact about the reality. Today, I couldn't get up, and just felt awful in general. I called him at work to see if he'd pick up some items at the store before he comes home. I later texted him and said I was taking a hot bath and maybe I'd be able get to the store. It took me hours, but I did manage to make it to the store.
Each day I find some reason to get up, and move about. Since this nonsense with my feet and ankles, I find myself spending more time in the house than ever. Bathing, washing my hair, getting dressed, and putting on make up is a struggle. Trying to keep my life somewhat normal is a challenge.
I adjusted back in 2003 when I went from being super mom, to not being able to move. It was actually Christmas 2002 when it hit me, feels like it happened overnight. I had to adjust then, and it was really hard. I can still recall how I felt inside, and certain movies and television shows I was watching, suffering in silence. My kids were still young, and I didn't want to scare them. It was like I was taken by storm, my entire life was swept up and taken out to sea, never to return. I guess this recent setback with my feet and ankles will take me time to adjust to, but I don't like not being able to get out of the house on my own, and I need to purchase a little electric cart to get around.
Having to sit and/or lay down with my feet up is like torture. I think of the things I want to be doing, and I can feel my blood pressure raising. Sometimes I imagine myself hiking to the top of a mountain at sunset, and imagine the sun shining and feeling the warmth.
I can't always control the way I feel about this, and is why I at times feel sorry for myself. I get annoyed, irritable, and short tempered.
My husband is the RA champ, he really is wonderful. He is always very positive and matter of fact about the reality. Today, I couldn't get up, and just felt awful in general. I called him at work to see if he'd pick up some items at the store before he comes home. I later texted him and said I was taking a hot bath and maybe I'd be able get to the store. It took me hours, but I did manage to make it to the store.
Each day I find some reason to get up, and move about. Since this nonsense with my feet and ankles, I find myself spending more time in the house than ever. Bathing, washing my hair, getting dressed, and putting on make up is a struggle. Trying to keep my life somewhat normal is a challenge.
Stretch marks on feet & ankles from swelling
I decided to make this a separate blog. So how many of you have stretch marks on the tops of your ankles and sides from swelling so badly? I also have new stretch marks on the front of my ankle area, just about where a short sock would sit. Its so bizarre, I don't have any fat there!
The pain is so awful, its like I'm being tortured, even when I am not standing. The pain in my feet and ankles at night is like severe stabbing, can also feel like burning, and just flat out misery.
Do any of you have this issue? Its new for me, and funny that I'm turning 50 this year, is this a sign of whats to come? hahaha!
The pain is so awful, its like I'm being tortured, even when I am not standing. The pain in my feet and ankles at night is like severe stabbing, can also feel like burning, and just flat out misery.
Do any of you have this issue? Its new for me, and funny that I'm turning 50 this year, is this a sign of whats to come? hahaha!
Feet and ankle battle
So around June of 2014 my feet started acting up. My ankles are constantly swelling, so that part was nothing new. But my feet, the pain in my heels and up the back of my heel was so excruciatingly painful, I was finding it difficult to even walk.
Months passed, and next thing I know, I am unable to get out of bed, literally. I'm stumbling around trying to get up even out of a chair. Going shopping, yeah right. Over the Holiday, I had to drive to each store, even those in the mall, and hobble into the store, sitting just to get to the department I needed to get to. More than one store required at least a 20 minute break in my car.
So I dug out my walker, which helps me get out of bed, sometimes. If it so bad, I cannot use my feet at all. I've had to drop to my knees and crawl to the bathroom, which is the only place I really need to go when I'm home alone. After I get up, I usually get warmed up a little bit, and I'm not falling down.
So to my old rheumatologist I went, I have been without one for months. Tests, blood work, and finally a decision to go back on methotrexate again. This time I'm trying the self injectable shots, 15mg per week of the nasty stuff. I'm trying to have a good attitude about it, but Im really struggling.
Does anyone else have giant ankles, tops of the feet swelling, such severe pain on the bottoms of my heels and up my achilles tendon that I'd like to vomit.
Months passed, and next thing I know, I am unable to get out of bed, literally. I'm stumbling around trying to get up even out of a chair. Going shopping, yeah right. Over the Holiday, I had to drive to each store, even those in the mall, and hobble into the store, sitting just to get to the department I needed to get to. More than one store required at least a 20 minute break in my car.
So I dug out my walker, which helps me get out of bed, sometimes. If it so bad, I cannot use my feet at all. I've had to drop to my knees and crawl to the bathroom, which is the only place I really need to go when I'm home alone. After I get up, I usually get warmed up a little bit, and I'm not falling down.
So to my old rheumatologist I went, I have been without one for months. Tests, blood work, and finally a decision to go back on methotrexate again. This time I'm trying the self injectable shots, 15mg per week of the nasty stuff. I'm trying to have a good attitude about it, but Im really struggling.
Does anyone else have giant ankles, tops of the feet swelling, such severe pain on the bottoms of my heels and up my achilles tendon that I'd like to vomit.
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