mystic
04-12-2009, 01:01 AM
:D
Hello everyone:
Please, Please help if you can. This post is long, sorry. I just got out of the hospital again and it was awful. I am ready to toss all of my pills and be done with it. (Some history) This all started with me in 2004. Prior to that I was diagnosed with Scleritis. Very painful. I was told it was probably systemic caused by an autoimmune disease, but yearly tests came up with nada and physically, otherwise I was doing great. I was very active; weight lifting, walking miles per week, hiking, pilates, tai chi, and just loved being physical. It just seems to me that whatever my doctors tell me don't seem to give some of the ER or hospital ward doctors enough of an explanation for my symptoms, so they treat me like I'm either nuts or a druggy. In 2004 I developed proteinuria that went untreated by a physician and remained that way until I gained over 100 lbs of water and my bp was regularly 150/90 or 100. I found another dr and he put me on ace inhibitors, but didn't have time for me after that. I had severe ab pain and gyn problems and in 2005 I had a radical abdominal hysterectomy (that was surgery #18 of 20 surgeries- 1galbladder the rest gyn or later scar removal) That got rid of the pain for a while, but it came back with a vengeance and then new docs told me that I had to have an autoimmune condition that caused overgrowth of scar tissue, but all tests remained neg. In 2006, A good doc decided to take a peek in may ab and found tons of scarring and keloids, he also was of the opinion that this was caused by an autoimmune, most likely lupus or scleroderma or both causing me to produce too much collagen, especially since I healed well on the outside, but look soooo much younger than my age. No wrinkles at all! Even now and I am 42 (43 in October). I also got butterfly rash 1x and other symptoms more than once. So the good doc had scars removed as a last ditch effort to control my pain. It worked until the scars grew back, but I had sweet relief for 3 months.
In 2007 I had 2 strokes. I thought they were TIA's but they lasted too long for that 3 days to 1 week with left side of face paralyzed and looking as though it melted. The docs on the hospital ward thought I was possibly nuts until I got referred to a Neurologist who diagnosed the strokes and did many test including nerve conduction and found that I have polyneuropathy with significant autonomic involvement. I might have been diagnosed earlier when I told docs about leg tingling and pain, legs giving out without warning or reason, and off and on difficulty swallowing. The Neuro also diagnosed diabetes that he believes I developed after being on extremely high doses of prednisone for over 6 years (at that time). I was able to bump down to 10mg of prednisone a day when switched from Methotrexate (even with 75mg per week injection, I still had bad scleritis flares and could not reduce dosage of prednisone) and was put on 2000mg a day of Cellcept.
I am a fighter. I have fought to survive difficulties growing up. I fought not to let anything get in the way of having a good marriage, raising 4 kids (now adults), getting good grades in college while holding down as many as 3 jobs, getting into law school, and getting the jobs I really dreamed of. I have worked and lived as an adult since 15. I have relied on myself because my younger years taught me that If you could rely on yourself, you never had to be crushed by over relying on those who might let you down. It was how I kept myself safe and my commitment to never being a victim again. And now this. Now I have dealt with feeling that my body has betrayed me, or that I must have done something to make this happen. I thought that I stopped feeling as though I was being punished, possibly for the sin of being to proud of myself or believing that I would always be able to take care of me. I was hard on myself, still am. I was a social worker and paralegal before this and acted as an advocate for children, crime victims, and the severely mentally impaired. I taught others to fight, but when it was time for me to fight for myself, I found it overwhelming despite my knowledge of the legal, social services, and health care systems. I never took "no" as the answer for any reasonable needs of my clients. I did not stop until a client got what they needed. I came in early and left late, and I truly loved what I did. Now I feel less than nothing. I have fought hard for medicine and fair treatment since 2004. I made some significant headway, but now it seems my docs are at a standstill and that what diagnosis I so have is not enough for other docs to take my pain seriously.
A few months ago I developed new symptoms so I got up my nerve and I finally told my Neuro about my memory loss, especially complete loss of what I was talking about during a discussion, my mispronunciation of words I commonly use, and how I use the wrong words when I mean to say other words. He felt it was my age and menopause. I gave it some consideration even though I hate when doctors with female patients often push their problems off to age or hormones. He checked for seizures again with another EEG but he didn't believe the test will show anything. But the more I thought about this, the more I felt unsatisfied with that answer. My mother in law is 71 and she deals with daily stressors, she laughs about the occassional memory thing, we all do, but not much more. But I'm 42. I the Neoro's answer because I'm afraid he is wrong. I did'nt want to believe it could be anything else. I also when writing, I skip letters. I think one thing and write something different. Typing's not so bad, with frequent use of the back button. I am not rushed or hurried during these times. Journaling or casual conversation. Also ( I didn't tell him, the leg and arm pains have made it almost impossible to sleep as anything I lay on hurts right down to the bones and my feet often feel that they were beaten across the bottoms even with an increase in my lyrica 400mg a day).
To sum this horribly long post up..I am emotionally sickened and drowning in shame about my condition and at the end of my rope. The doctors I have, offer no more answers about my chronic and at times extremely severe abdominal pain or any of my fully diagnosed stuff either, and the docs at the hospital (not all) but the wrong one at the worst and most painful times think I am just some poor mentally ill woman making this crap up (and I have been known to walk out due to the doctor's unwillingness to treat me as some of the other hospital docs have). This is the cry for help it sounds like. I live in Southeastern Connecticut.
I need whatever help you can offer...:(
"The light believes it is fast, but no matter how fast the light is, when the light arrives, it finds the dark has gotten there first."Beckett
*grassman
Hello everyone:
Please, Please help if you can. This post is long, sorry. I just got out of the hospital again and it was awful. I am ready to toss all of my pills and be done with it. (Some history) This all started with me in 2004. Prior to that I was diagnosed with Scleritis. Very painful. I was told it was probably systemic caused by an autoimmune disease, but yearly tests came up with nada and physically, otherwise I was doing great. I was very active; weight lifting, walking miles per week, hiking, pilates, tai chi, and just loved being physical. It just seems to me that whatever my doctors tell me don't seem to give some of the ER or hospital ward doctors enough of an explanation for my symptoms, so they treat me like I'm either nuts or a druggy. In 2004 I developed proteinuria that went untreated by a physician and remained that way until I gained over 100 lbs of water and my bp was regularly 150/90 or 100. I found another dr and he put me on ace inhibitors, but didn't have time for me after that. I had severe ab pain and gyn problems and in 2005 I had a radical abdominal hysterectomy (that was surgery #18 of 20 surgeries- 1galbladder the rest gyn or later scar removal) That got rid of the pain for a while, but it came back with a vengeance and then new docs told me that I had to have an autoimmune condition that caused overgrowth of scar tissue, but all tests remained neg. In 2006, A good doc decided to take a peek in may ab and found tons of scarring and keloids, he also was of the opinion that this was caused by an autoimmune, most likely lupus or scleroderma or both causing me to produce too much collagen, especially since I healed well on the outside, but look soooo much younger than my age. No wrinkles at all! Even now and I am 42 (43 in October). I also got butterfly rash 1x and other symptoms more than once. So the good doc had scars removed as a last ditch effort to control my pain. It worked until the scars grew back, but I had sweet relief for 3 months.
In 2007 I had 2 strokes. I thought they were TIA's but they lasted too long for that 3 days to 1 week with left side of face paralyzed and looking as though it melted. The docs on the hospital ward thought I was possibly nuts until I got referred to a Neurologist who diagnosed the strokes and did many test including nerve conduction and found that I have polyneuropathy with significant autonomic involvement. I might have been diagnosed earlier when I told docs about leg tingling and pain, legs giving out without warning or reason, and off and on difficulty swallowing. The Neuro also diagnosed diabetes that he believes I developed after being on extremely high doses of prednisone for over 6 years (at that time). I was able to bump down to 10mg of prednisone a day when switched from Methotrexate (even with 75mg per week injection, I still had bad scleritis flares and could not reduce dosage of prednisone) and was put on 2000mg a day of Cellcept.
I am a fighter. I have fought to survive difficulties growing up. I fought not to let anything get in the way of having a good marriage, raising 4 kids (now adults), getting good grades in college while holding down as many as 3 jobs, getting into law school, and getting the jobs I really dreamed of. I have worked and lived as an adult since 15. I have relied on myself because my younger years taught me that If you could rely on yourself, you never had to be crushed by over relying on those who might let you down. It was how I kept myself safe and my commitment to never being a victim again. And now this. Now I have dealt with feeling that my body has betrayed me, or that I must have done something to make this happen. I thought that I stopped feeling as though I was being punished, possibly for the sin of being to proud of myself or believing that I would always be able to take care of me. I was hard on myself, still am. I was a social worker and paralegal before this and acted as an advocate for children, crime victims, and the severely mentally impaired. I taught others to fight, but when it was time for me to fight for myself, I found it overwhelming despite my knowledge of the legal, social services, and health care systems. I never took "no" as the answer for any reasonable needs of my clients. I did not stop until a client got what they needed. I came in early and left late, and I truly loved what I did. Now I feel less than nothing. I have fought hard for medicine and fair treatment since 2004. I made some significant headway, but now it seems my docs are at a standstill and that what diagnosis I so have is not enough for other docs to take my pain seriously.
A few months ago I developed new symptoms so I got up my nerve and I finally told my Neuro about my memory loss, especially complete loss of what I was talking about during a discussion, my mispronunciation of words I commonly use, and how I use the wrong words when I mean to say other words. He felt it was my age and menopause. I gave it some consideration even though I hate when doctors with female patients often push their problems off to age or hormones. He checked for seizures again with another EEG but he didn't believe the test will show anything. But the more I thought about this, the more I felt unsatisfied with that answer. My mother in law is 71 and she deals with daily stressors, she laughs about the occassional memory thing, we all do, but not much more. But I'm 42. I the Neoro's answer because I'm afraid he is wrong. I did'nt want to believe it could be anything else. I also when writing, I skip letters. I think one thing and write something different. Typing's not so bad, with frequent use of the back button. I am not rushed or hurried during these times. Journaling or casual conversation. Also ( I didn't tell him, the leg and arm pains have made it almost impossible to sleep as anything I lay on hurts right down to the bones and my feet often feel that they were beaten across the bottoms even with an increase in my lyrica 400mg a day).
To sum this horribly long post up..I am emotionally sickened and drowning in shame about my condition and at the end of my rope. The doctors I have, offer no more answers about my chronic and at times extremely severe abdominal pain or any of my fully diagnosed stuff either, and the docs at the hospital (not all) but the wrong one at the worst and most painful times think I am just some poor mentally ill woman making this crap up (and I have been known to walk out due to the doctor's unwillingness to treat me as some of the other hospital docs have). This is the cry for help it sounds like. I live in Southeastern Connecticut.
I need whatever help you can offer...:(
"The light believes it is fast, but no matter how fast the light is, when the light arrives, it finds the dark has gotten there first."Beckett
*grassman