E
ericaj
Hi Guys,
Thought I should post once as i've gotten several pm's over the last week and also talked to Ross for a bit on messenger but havent had much time to "really talk" to anyone. Thanks Karlynn, Niki, Janet and all of you for keeping me in your thoughts even when i'm not around as much. Have been trying to keep myself busy to keep myself pre-occupied and to an extent it has worked. And since I am back in school that to helps.
One of my professors has given me a rough time already when I tried explaining to her the generals behind being sick and possibly needing to miss more days than the 2 you can have withut being docked pts. So I am working with the College's disabilies coordinator, the Social Worker at the Children's Hospital and my Pulmn. (same hosp) to get teh paperwork I need to have on file and get a plan set - just in case.
I follow up with my Lung Dr. next Thurs. and I have many many questions for her about the Lung stuff. I guess mostly though I don't really understand what caused or is causing this Lung stuff and if it is treatable to prevent it from progressing or even if it is progressive. I know she'll have no problem taking the time to talk to me about my questions and although we email back and forth I think these are questions I should ask her in person.
We are also still working on trying to find a good match of medication to treat the PLMD - right now on Neurontin and she just lowered that dose down to 100mgs last week and am gonig to add another 100mgs this week - but right now I just don't like the side effect of constant drowsiness. I never have good luck oin finding a right fit on meds right away though so hopefully theres something.
I also see my EP in another week to have teh Medtronic ILR read and eval. how e/t is going. Have been going to Counseling weekly now (just past 2 wks)
and it is actually really beneficial I think - or atleast it will be. F/U with ACHD Cardio next month for another Echo and visit. No results on MPS tests yet but
a/t now i'd think. The will call when they have them and will see Genetics team again to go from there either on a possible treatment or more Drs lkng 4 more answers.
Sorry I havent replied much to a/o posts, I read most all of them but my hands tend to hurt with to much typing. And of course try to keep busy with school (lots of homework!) and other things. My thoguhts are always with you all though!!!
- PS: Anyone know what might cause lower back left side pain, occasionally also left side stomach???)
Erica
Thought I should post once as i've gotten several pm's over the last week and also talked to Ross for a bit on messenger but havent had much time to "really talk" to anyone. Thanks Karlynn, Niki, Janet and all of you for keeping me in your thoughts even when i'm not around as much. Have been trying to keep myself busy to keep myself pre-occupied and to an extent it has worked. And since I am back in school that to helps.
One of my professors has given me a rough time already when I tried explaining to her the generals behind being sick and possibly needing to miss more days than the 2 you can have withut being docked pts. So I am working with the College's disabilies coordinator, the Social Worker at the Children's Hospital and my Pulmn. (same hosp) to get teh paperwork I need to have on file and get a plan set - just in case.
I follow up with my Lung Dr. next Thurs. and I have many many questions for her about the Lung stuff. I guess mostly though I don't really understand what caused or is causing this Lung stuff and if it is treatable to prevent it from progressing or even if it is progressive. I know she'll have no problem taking the time to talk to me about my questions and although we email back and forth I think these are questions I should ask her in person.
We are also still working on trying to find a good match of medication to treat the PLMD - right now on Neurontin and she just lowered that dose down to 100mgs last week and am gonig to add another 100mgs this week - but right now I just don't like the side effect of constant drowsiness. I never have good luck oin finding a right fit on meds right away though so hopefully theres something.
I also see my EP in another week to have teh Medtronic ILR read and eval. how e/t is going. Have been going to Counseling weekly now (just past 2 wks)
and it is actually really beneficial I think - or atleast it will be. F/U with ACHD Cardio next month for another Echo and visit. No results on MPS tests yet but
a/t now i'd think. The will call when they have them and will see Genetics team again to go from there either on a possible treatment or more Drs lkng 4 more answers.
Sorry I havent replied much to a/o posts, I read most all of them but my hands tend to hurt with to much typing. And of course try to keep busy with school (lots of homework!) and other things. My thoguhts are always with you all though!!!
- PS: Anyone know what might cause lower back left side pain, occasionally also left side stomach???)
Erica
