E
ericaj
Hi All,
Just thought i'd up date - not that there is anything really new since last weeks tests but this is kind of like my once a week public journal where I sometimes get feed back and sometimes just vent.
Last week tuesday I received just a beautiful email from my Pulmonologist which has been keeping me going all week now, she is a wonderful Dr. and a very down to earth person whom I can always count on to make me laugh and to make me want to hug her for her sweetness. I have also been talking to Niki (gnusgal) almost every night via yahoo mess. and she too has kept my spirits up by being there to talk to and just by being a friend. Niki is going through a pretty rough time herself but always can make me laugh and smile
no matter how bad I feel or how bad things are.
The monday right after Christmas i'll see my Pulm. and get the results from my Sleep Study (unless she gets the results sooner, if she would she said she'd call and have me come in sooner) and I guess i'll find out if there are any options for treating my Restrictive Lung Disease which is most probably from an abnormal chest wall structure.
Have been sick to my stomach the last three nights and hardly able to keep anything down as I get these aweful stomach cramps and bad well diarrhea (i hate that word, sorry) which I think may be partially from going up on my dose of Midodrine, not sure though, but I hope that stops pretty darn soon.
The appt with the Geneticist at CHW (Children's Hospital here in WI) is Jan 17 to diagnose or rule out the Mucopolysaccharidoses, but that also happens to be the day I start classes again, and although my Drs. have already said they'll write me a note for my professors I went ahead and possibly going to see another Geneticist at a different location here in WI, possibly as soon as next week. I am curious to see if MPS is what is really going on, although my Cardio is almost positive this is the case, and I believe him as I am sure he has seen this before being an adult congenital cardiologist as they would be the ones to most often pick up on the problem.
Going tomorrow to finally see the Counselor (Social worker) so hoefully that goes well, although I really don't want to get up early. But I should find out a few more things tomorrow and will definetly let you guys know.
I hope things improve for those of you going through hard times, and that those of you who are feeling well stay well!! I know absolutely how frustrating it is to not get answers or to always be waiting -- it is completely nuts sometimes what we have to go through to get answers!!!
Erica
Just thought i'd up date - not that there is anything really new since last weeks tests but this is kind of like my once a week public journal where I sometimes get feed back and sometimes just vent.
Last week tuesday I received just a beautiful email from my Pulmonologist which has been keeping me going all week now, she is a wonderful Dr. and a very down to earth person whom I can always count on to make me laugh and to make me want to hug her for her sweetness. I have also been talking to Niki (gnusgal) almost every night via yahoo mess. and she too has kept my spirits up by being there to talk to and just by being a friend. Niki is going through a pretty rough time herself but always can make me laugh and smile
no matter how bad I feel or how bad things are.
The monday right after Christmas i'll see my Pulm. and get the results from my Sleep Study (unless she gets the results sooner, if she would she said she'd call and have me come in sooner) and I guess i'll find out if there are any options for treating my Restrictive Lung Disease which is most probably from an abnormal chest wall structure.
Have been sick to my stomach the last three nights and hardly able to keep anything down as I get these aweful stomach cramps and bad well diarrhea (i hate that word, sorry) which I think may be partially from going up on my dose of Midodrine, not sure though, but I hope that stops pretty darn soon.
The appt with the Geneticist at CHW (Children's Hospital here in WI) is Jan 17 to diagnose or rule out the Mucopolysaccharidoses, but that also happens to be the day I start classes again, and although my Drs. have already said they'll write me a note for my professors I went ahead and possibly going to see another Geneticist at a different location here in WI, possibly as soon as next week. I am curious to see if MPS is what is really going on, although my Cardio is almost positive this is the case, and I believe him as I am sure he has seen this before being an adult congenital cardiologist as they would be the ones to most often pick up on the problem.
Going tomorrow to finally see the Counselor (Social worker) so hoefully that goes well, although I really don't want to get up early. But I should find out a few more things tomorrow and will definetly let you guys know.
I hope things improve for those of you going through hard times, and that those of you who are feeling well stay well!! I know absolutely how frustrating it is to not get answers or to always be waiting -- it is completely nuts sometimes what we have to go through to get answers!!!
Erica
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