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Living With my Demon
May 07, 2008 07:27AM
- 2 comments
I sit here on the edge of despair, my mind is racing, my body not keeping up, what to do? What to say? They say I am in a major flare. So I reach out to others who I know still care.
I don't even recognize myself anymore. Today has been the first day in a long time that I have been able to type more than a few sentences, I have been so swollen and depressed that I haven't been able to talk to my friends here.
My Demon has decided to attack my hips, ankles, wrists, fingers and knees and the only way to compare the pain is to compare it with a major sprain or break, it has also decided to start affecting my heart so now I have a right sided heart strain which I still cannot get a straight answer on. My frustration with this process is apparently clear. There needs to be more information and research available for people with Still's.
It is alarming that most people are diagnosed after an average of 5 years in limboland. It is scary that it sometimes takes a heart attack in a young person for them to get diagnosed. It can ravage a person's body beyond repair. It shouldn't take Drs so long to commit themselves to a dx.
So what can a person do while they are waiting for a Dr to commit? Make NSAIDS a priority in routine medications, get a doctor to prescribe you some steroids, its the best first defense drug to reduce the inflammatory process. If it helps, give a person access to disease modifying anti rheumatic drugs, before it is too late.
And for goodness sakes Drs, give a person some pain medication. Quit saying that a persons mental state is making the pain worse. Pain is pain. it is real, whether it is from peoples bones or muscles. I am so tired of hearing, there isn't enough pain medication I could give you to help you with your pain, but try this anti-depressant, it might help with the depressing aspects of chronic pain!!! UGH!!!!!
Okay, I had to get this off of my chest today. I am done for now
I don't even recognize myself anymore. Today has been the first day in a long time that I have been able to type more than a few sentences, I have been so swollen and depressed that I haven't been able to talk to my friends here.
My Demon has decided to attack my hips, ankles, wrists, fingers and knees and the only way to compare the pain is to compare it with a major sprain or break, it has also decided to start affecting my heart so now I have a right sided heart strain which I still cannot get a straight answer on. My frustration with this process is apparently clear. There needs to be more information and research available for people with Still's.
It is alarming that most people are diagnosed after an average of 5 years in limboland. It is scary that it sometimes takes a heart attack in a young person for them to get diagnosed. It can ravage a person's body beyond repair. It shouldn't take Drs so long to commit themselves to a dx.
So what can a person do while they are waiting for a Dr to commit? Make NSAIDS a priority in routine medications, get a doctor to prescribe you some steroids, its the best first defense drug to reduce the inflammatory process. If it helps, give a person access to disease modifying anti rheumatic drugs, before it is too late.
And for goodness sakes Drs, give a person some pain medication. Quit saying that a persons mental state is making the pain worse. Pain is pain. it is real, whether it is from peoples bones or muscles. I am so tired of hearing, there isn't enough pain medication I could give you to help you with your pain, but try this anti-depressant, it might help with the depressing aspects of chronic pain!!! UGH!!!!!
Okay, I had to get this off of my chest today. I am done for now
Ada,
I am so sorry to hear that you are dealing with all of this. I wish I had some words of wisdom to offer you in this crisis.
I hear ya, about the pain. I can so identify with the "here try this anti-depressant." I don't need an anti-depressant, the pain itself is causing the depressive moods. Somebody listen. Don't worry about addiction. You can follow my pain medication usage as closely as you want to. I don't want to take pain medication. I would rather live my life with less PILLS. But how do you do that when you are in chronic pain? You awaken to each day, knowing how much pain you will be in. Yes another day, where the pain wears you down emotionally and physically. I hear ya, Ada.
I would do anything I could to try and cheer you up. What I can offer you right now, is sincere prayer. You are a dear, dear friend and your discomfort concerns me. I want so much to help. Please take my hand and sap some strength from me...I'll give you any extra strength I have available, if only it would help you.
Big Hugs and Many Prayers,
Heather
I am so sorry to hear that you are dealing with all of this. I wish I had some words of wisdom to offer you in this crisis.
I hear ya, about the pain. I can so identify with the "here try this anti-depressant." I don't need an anti-depressant, the pain itself is causing the depressive moods. Somebody listen. Don't worry about addiction. You can follow my pain medication usage as closely as you want to. I don't want to take pain medication. I would rather live my life with less PILLS. But how do you do that when you are in chronic pain? You awaken to each day, knowing how much pain you will be in. Yes another day, where the pain wears you down emotionally and physically. I hear ya, Ada.
I would do anything I could to try and cheer you up. What I can offer you right now, is sincere prayer. You are a dear, dear friend and your discomfort concerns me. I want so much to help. Please take my hand and sap some strength from me...I'll give you any extra strength I have available, if only it would help you.
Big Hugs and Many Prayers,
Heather
Mornin' Honey!
Sounds like things are not getting much better for you are they?
I would like to know what the he** the doctors are thinking...no wait...they have lost their capability of thinking of anything that makes sense so they are knocking your pain up to your mental state...talk about grabbing at straws! You KNOW that you are feeling the pain as do the rest of us people IN PAIN!
It seems to me that the outcome of medical school would make more sense if each and every doctor was made to actually feel pain and that it really should be a pre-requisite to even get accepted, don't ya think?
I don't know what I can do to make you feel better honey and this really frustrates me as I know it does you but please know that you are in my thoughts always but even moreso when I have a bout of severe pain...it reminds me that you are feeling this feeling constantly and it hurts even more.
I wish, I wish, I wish I could be closer to offer you more comfort but I am not and right now I can't get any closer but who knows...maybe in the future...who knows...I believe we are destined to fish together, don't you???
Loves ya,
Rena
Sounds like things are not getting much better for you are they?
I would like to know what the he** the doctors are thinking...no wait...they have lost their capability of thinking of anything that makes sense so they are knocking your pain up to your mental state...talk about grabbing at straws! You KNOW that you are feeling the pain as do the rest of us people IN PAIN!
It seems to me that the outcome of medical school would make more sense if each and every doctor was made to actually feel pain and that it really should be a pre-requisite to even get accepted, don't ya think?
I don't know what I can do to make you feel better honey and this really frustrates me as I know it does you but please know that you are in my thoughts always but even moreso when I have a bout of severe pain...it reminds me that you are feeling this feeling constantly and it hurts even more.
I wish, I wish, I wish I could be closer to offer you more comfort but I am not and right now I can't get any closer but who knows...maybe in the future...who knows...I believe we are destined to fish together, don't you???
Loves ya,
Rena
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