Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Thanks for the info on Thin Basement Membrane disease. I have had 54 tests done and one kidney biopsy. My nephrologists has never seen this disease before. I am the first patient he has treated with this. The biopsy went to a world reknowned kidney pathologists at LSU medical school for a diagnosis. There is very limited info on this disease. I know it is an autoimmune disease that was given to me by my birth parents, whom I do not know as I am adopted. I would hate to pass this on to my kids and my grandson. I have mega protein and blood in the urine...so I guess the glomeular or whatever they are called rupture all the time. My bp has to be 130/70 all the time. It rises and I do not even know it. That is why I had to leave teaching kindergarten due to the stress and my bp. I am tired all time time. I go to bed most nites at four thirty in the afternoon after I get home and take my bubble bath. The meds for the bp make me very nervous and depressed, so I take meds for both of those things...even though I go to bed at four thirty, I rarely sleep... This discoid lupus I just found out I had is just another thing. I am having to learn to listen to my body. When I do not, I hurt, my hips and arms mostly, and that rash is all over my face...I have fever lots for no apparent reason and am tired most of the days. At least now, my colleagues do not ask me what is wrong with my face all the time...they know now...and they are always asking how I feel which makes me feel better actually. I find I am fortunate though even though I have TBM, discoid lupus and asthma. God does not give one more than they can handle...and I look at it like this...there are always so many people that are worse off than I am... I just take my time, try to eat right, rest and feed my birds and squirrels outside...work with my three and four year olds and have fun with my job...I try to keep the stress out of my life. I also am in negotiations to record a CD for children with the songs I have written. A cajun band wants to use my 300 or so songs to cut a CD...yep they are copyrighted by the Library of Congress...I am not crazy yet...hehe... Why am I rambling...I have no clue...I am sure yall are bored stiff right now...chippy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Thanks for the info on Thin Basement Membrane disease. I have had 54 tests done and one kidney biopsy. My nephrologists has never seen this disease before. I am the first patient he has treated with this. The biopsy went to a world reknowned kidney pathologists at LSU medical school for a diagnosis. There is very limited info on this disease. I know it is an autoimmune disease that was given to me by my birth parents, whom I do not know as I am adopted. I would hate to pass this on to my kids and my grandson. I have mega protein and blood in the urine...so I guess the glomeular or whatever they are called rupture all the time. My bp has to be 130/70 all the time. It rises and I do not even know it. That is why I had to leave teaching kindergarten due to the stress and my bp. I am tired all time time. I go to bed most nites at four thirty in the afternoon after I get home and take my bubble bath. The meds for the bp make me very nervous and depressed, so I take meds for both of those things...even though I go to bed at four thirty, I rarely sleep... This discoid lupus I just found out I had is just another thing. I am having to learn to listen to my body. When I do not, I hurt, my hips and arms mostly, and that rash is all over my face...I have fever lots for no apparent reason and am tired most of the days. At least now, my colleagues do not ask me what is wrong with my face all the time...they know now...and they are always asking how I feel which makes me feel better actually. I find I am fortunate though even though I have TBM, discoid lupus and asthma. God does not give one more than they can handle...and I look at it like this...there are always so many people that are worse off than I am... I just take my time, try to eat right, rest and feed my birds and squirrels outside...work with my three and four year olds and have fun with my job...I try to keep the stress out of my life. I also am in negotiations to record a CD for children with the songs I have written. A cajun band wants to use my 300 or so songs to cut a CD...yep they are copyrighted by the Library of Congress...I am not crazy yet...hehe... Why am I rambling...I have no clue...I am sure yall are bored stiff right now...chippy Quote Link to comment Share on other sites More sharing options...
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