Thursday, June 22, 2006
Doctor ...
Well, I went to the lupus doctor Monday morning and we talked about the seizures that I've had this year. He's sending me to see a neurologist. I have an appointment for August sometime. (I'd have to look)
They did blood work ... took three vials of blood ... and I should know next week how my lupus is doing ... the part that's inside and you can't see.
I told him that I've opted not to get the shot that he offers unless I'm in TERRIBLE pain. He has one that you can get every three months. He doesn't like to give steroids ... which is what I've always taken for a "quick fix" when my lupus has me in too much pain or my pleurisy is acting up. He has a shot, and I've forgotten what it's called ... that you get and it takes care of all that.
The only problem for me personally is this ...
I'm in chronic pain every single day ... because of that, my pain tolerance is very high.
I can literally walk around and function with the type of pain that would put someone else in bed.
The shot left me pain free for two months ... which was great ... until it wore off and the full blown pain was back all at once. All of the sudden I hurt so bad I thought I was going to die. It really wiped me out. I couldn't do hardly anything. All of my friends thought I was mad because I wasn't "normal" self. The second shot wore off after six weeks and then "whammo" ... took me out again.
So, I've decided that being pain free for a while is not worth the consequences I have to pay when the shot wears off. I can function better being in pain every day than doing it the other way. That may not make sense to anyone who does not live with chronic pain ... but it makes perfect sense to me.
The doctor said that he understood, but still prefers the shots over the steroids. So ... we'll see how it goes. Wish me luck!!!!
They did blood work ... took three vials of blood ... and I should know next week how my lupus is doing ... the part that's inside and you can't see.
I told him that I've opted not to get the shot that he offers unless I'm in TERRIBLE pain. He has one that you can get every three months. He doesn't like to give steroids ... which is what I've always taken for a "quick fix" when my lupus has me in too much pain or my pleurisy is acting up. He has a shot, and I've forgotten what it's called ... that you get and it takes care of all that.
The only problem for me personally is this ...
I'm in chronic pain every single day ... because of that, my pain tolerance is very high.
I can literally walk around and function with the type of pain that would put someone else in bed.
The shot left me pain free for two months ... which was great ... until it wore off and the full blown pain was back all at once. All of the sudden I hurt so bad I thought I was going to die. It really wiped me out. I couldn't do hardly anything. All of my friends thought I was mad because I wasn't "normal" self. The second shot wore off after six weeks and then "whammo" ... took me out again.
So, I've decided that being pain free for a while is not worth the consequences I have to pay when the shot wears off. I can function better being in pain every day than doing it the other way. That may not make sense to anyone who does not live with chronic pain ... but it makes perfect sense to me.
The doctor said that he understood, but still prefers the shots over the steroids. So ... we'll see how it goes. Wish me luck!!!!
Comments:
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Don't know how you do it... I am in awe of what you endure and how much living you seem to get done as well!!! (Not to mention the amount of blogging!!!)
Dear Ava, I bow to you!
As you know, I have 7 degenerative discs and atrohic gastritis, thoracic outlet syndrome, and more, including chronic fatigue syndrome.
The back started by late 20's by early 30's it was burning! The rest all started with the stomach shutting down.
I was like you, and followed the medicinal plan. In two years(five years ago) I was soOo sick; I prayed for death's visit for me. really. not suicidally, but as a mercy!!
One day, I thought no more! I asked a friend to take my son for almost 4 days-told her why. I went cold-turkey off all the meds they had me on. I only stayed on the stomach pills so I can eat and drink. lol
Within a few weeks, I had a little energy and appetitie back! I didn't cry so much, nor sleep so much; or so little. I lost so much weight, I was lethargic.
Within a year, I was healthier than I'd felt in the last two on their meds!!
I cannot tolerate pain killers. They make me toss my stomach. So the pills they had me on, were for arthritis, inflammation, muscle relaxants, anti-depressants. I felt polluted, and much worse than the initial pain itself.
Today, I am absolutely medicine-free except for losec for my stomach, two other stomach pills to eat and digest, and one for my bladder with an added ingredient as an anti-depressant.
So far, so good! The pain is my whole body, most days. So stiff. Every joint. I'll be 50 Aug. 7th; and feel like i"m going on 90.
My stomach is so bad; I begged the docs to take it out 4 years ago, and they won't...even though it will develope cancer. They gave me 5 years to live, and I've beat that by two years(knock on wood!)
My faith, and I believe my decision to not take the meds slowed down the possible scenario I face? There is no cure for atrophic gastritis.
Ava, sorry for the long "diarY" post; but, I really DO admire people like you and me; whom live lives of unbelievable pain; and yet, walk with grace, in music for you; and in my designs for me.
May we both, always walk this way...
North
As you know, I have 7 degenerative discs and atrohic gastritis, thoracic outlet syndrome, and more, including chronic fatigue syndrome.
The back started by late 20's by early 30's it was burning! The rest all started with the stomach shutting down.
I was like you, and followed the medicinal plan. In two years(five years ago) I was soOo sick; I prayed for death's visit for me. really. not suicidally, but as a mercy!!
One day, I thought no more! I asked a friend to take my son for almost 4 days-told her why. I went cold-turkey off all the meds they had me on. I only stayed on the stomach pills so I can eat and drink. lol
Within a few weeks, I had a little energy and appetitie back! I didn't cry so much, nor sleep so much; or so little. I lost so much weight, I was lethargic.
Within a year, I was healthier than I'd felt in the last two on their meds!!
I cannot tolerate pain killers. They make me toss my stomach. So the pills they had me on, were for arthritis, inflammation, muscle relaxants, anti-depressants. I felt polluted, and much worse than the initial pain itself.
Today, I am absolutely medicine-free except for losec for my stomach, two other stomach pills to eat and digest, and one for my bladder with an added ingredient as an anti-depressant.
So far, so good! The pain is my whole body, most days. So stiff. Every joint. I'll be 50 Aug. 7th; and feel like i"m going on 90.
My stomach is so bad; I begged the docs to take it out 4 years ago, and they won't...even though it will develope cancer. They gave me 5 years to live, and I've beat that by two years(knock on wood!)
My faith, and I believe my decision to not take the meds slowed down the possible scenario I face? There is no cure for atrophic gastritis.
Ava, sorry for the long "diarY" post; but, I really DO admire people like you and me; whom live lives of unbelievable pain; and yet, walk with grace, in music for you; and in my designs for me.
May we both, always walk this way...
North
Ava, I'm also prone to pleurisy. wow!! I thought I was the only other person on the planet who got that!! never met anyone else who got it before!! Nasty, nasty infection of the lung sacs. whew! I coached my son's baseball team many years ago; during a bout of it on the left lung. I could barely breath, and had to get one of the kid's dad's to co-coach the rest of the season; we took second place that year!
Ava-we have the triumphant spirit of joy-this is our strengths...
Ava-we have the triumphant spirit of joy-this is our strengths...
North,
I agree about having the triumphant spirit of joy-this is our strengths...
I made a choice ten years ago ... when I was so ill and in such pain that I was bed fast for a year. I literally reached that "point" where I chose to live and fight my way back to life ... to "die" ... quit trying and just shrivel up until I disappeared.
Reading the scriptures and music are what got me through. When I felt like I could go no further ... I would read ... listen to music ... and decide to continue on.
I thank God that it's no longer a daily decision for me ...
I am very thankful for life.
I agree about having the triumphant spirit of joy-this is our strengths...
I made a choice ten years ago ... when I was so ill and in such pain that I was bed fast for a year. I literally reached that "point" where I chose to live and fight my way back to life ... to "die" ... quit trying and just shrivel up until I disappeared.
Reading the scriptures and music are what got me through. When I felt like I could go no further ... I would read ... listen to music ... and decide to continue on.
I thank God that it's no longer a daily decision for me ...
I am very thankful for life.
I haven't read you past posts and so I didn't understand the type of pain you are in until I read this. My first thought was, That is why you need so much music in your life...Then you went and said that in your response to North.
Ava, I use music too but not for pain as you suffer. I have complete respect for you and how you so gracefully deal with the load you've been given. I use music for depression. I am bipolar. In some of my worst times I have had leaned heavily on music. I don't play..I sing. Singing for me is euphoric and works better than all the pills I take.
I am thankful you shared this. It is a beautiful reminder to me about the wonderful gifts from God. He has given us so much to help us beyond medicine and doctors.
Ava, I use music too but not for pain as you suffer. I have complete respect for you and how you so gracefully deal with the load you've been given. I use music for depression. I am bipolar. In some of my worst times I have had leaned heavily on music. I don't play..I sing. Singing for me is euphoric and works better than all the pills I take.
I am thankful you shared this. It is a beautiful reminder to me about the wonderful gifts from God. He has given us so much to help us beyond medicine and doctors.
Oshee,
While I am truly thankful for my doctors and medication, I do know that music keeps me going. I totally understand where you're coming from with your singing. Music lifts the heart and heals the wounded soul.
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While I am truly thankful for my doctors and medication, I do know that music keeps me going. I totally understand where you're coming from with your singing. Music lifts the heart and heals the wounded soul.
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