CF AWARENESS and MY SISTERS ;-)
Im getting really hyped for my CF walk this month. CF AWARENESS all the way!!
A week ago I got my nailed done (actually refilled from when I put them on for a wedding in March) however now they are PURPLE! I love them! more and more Im getting used to working, texting, typing, ect with them :-)
On Saturday I received a para cord heart braided bracelet that I ordered from another CF fellow and donated $10 to her team. You guessed it, the bracelet is PURPLE and black :-)
Yesterday I got a new haircut (layers with a permanent purple streak) I donated $30 to another CF team for a little boy who suffered worse days than I do at times :( I give so many props to mothers and fathers who raise CF children to not be afraid of CF but to be a fighter.
Thru all this, I have also made progress on my own CF Walk Team :-) Ive raised about $300 between donations and people purchasing my self published poetry book. Feel free to check it out and order yours today! I really enjoy writing poetry and Im finding a new fondness to short stories and blogging (afterall I can talk forever, why not document it, Maybe, just maybe I will be famous one day, lol) If Im not famous, in reality I just hope my optimism will show thru to individuals who need that extra motivation :-)
Heres the link to my book: http://www.blurb.com/bookstore/detail/2924140
Heres the link to my CF team for registration or small donations: http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7649&idUser=451053
To all my purple-ness, I do hope May 19th brings good weather. Last year was cold and rainy :( and well it was my first walk. These past couple years I have been becoming more and more actively involved in the CF community. I was nominated Secretary for Northwestern Memorial Hospitals Advisory Board in January. I am involved in the CF Roundtable newsletter.You should definitely check them out. All articles are by CF patients and their families on real life struggles and achievements. http://www.cfroundtable.com/
I heard some awesome news about CF advances today as well. Since Im a Double Delta F508, of course Ive been watching the new clinical trial and the results are looking good.
Check it out yourself:
http://www.cff.org/aboutCFFoundation/NewsEvents/5-7-Phase-2-Kalydeco-VX-809-Interim-Data-Results.cfm
Thats all for my CF blogging :-)
Normal life talk:
Rainy icky weather today however I was able to get some girl time in with my bestie or whom I like to call my sis, Leia :-) we went to the mall and Im sooo proud of myself, I didn't buy anything, other than a new hematite ring for $1, to replace the one I broke yesterday. I stay on top of it, I love their jewelry since I cant wear the 'fake' silver :-)
Leia and I have been friends for about 8yrs. We lived together off and on between relationships/in relationships. 18months ago, she made me Godmother to her beautiful daughter :-) She lived in Ohio for a year but shes back home!!! yay me!! They both will be with me at my walk, very exciting! She is pregnant again and well as of yet, we dont know what shes having but I STILL CANT WAIT!!
My other Bestie/Sis that I will mention alot is Stephanie. Stephanie and I have known each other practically all our lives. We met 22 years ago :-) She and I are very close at heart, however she still lives in my childhood area about an hour from where I am now, so we plan ahead for all day events :-) ALWAYS a good time. She has an 9month old little boy, whos adorable!!! She is also pregnant again and having another boy and....wait for it...wait for it....SHE ASKED ME TO BE GODMOTHER!!! YAY!!!
Heres the kicker, my sisters are due days apart from each other, Leias due Oct 15th and Stephs due Oct 19th :-) and They WILL be at different hospitals an hour away from each other. Wish me luck!!! I made both of their first childs births, I will make these too!!!
Thats enough for today! Happy Monday!!
A week ago I got my nailed done (actually refilled from when I put them on for a wedding in March) however now they are PURPLE! I love them! more and more Im getting used to working, texting, typing, ect with them :-)
On Saturday I received a para cord heart braided bracelet that I ordered from another CF fellow and donated $10 to her team. You guessed it, the bracelet is PURPLE and black :-)
Yesterday I got a new haircut (layers with a permanent purple streak) I donated $30 to another CF team for a little boy who suffered worse days than I do at times :( I give so many props to mothers and fathers who raise CF children to not be afraid of CF but to be a fighter.
Thru all this, I have also made progress on my own CF Walk Team :-) Ive raised about $300 between donations and people purchasing my self published poetry book. Feel free to check it out and order yours today! I really enjoy writing poetry and Im finding a new fondness to short stories and blogging (afterall I can talk forever, why not document it, Maybe, just maybe I will be famous one day, lol) If Im not famous, in reality I just hope my optimism will show thru to individuals who need that extra motivation :-)
Heres the link to my book: http://www.blurb.com/bookstore/detail/2924140
Heres the link to my CF team for registration or small donations: http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7649&idUser=451053
To all my purple-ness, I do hope May 19th brings good weather. Last year was cold and rainy :( and well it was my first walk. These past couple years I have been becoming more and more actively involved in the CF community. I was nominated Secretary for Northwestern Memorial Hospitals Advisory Board in January. I am involved in the CF Roundtable newsletter.You should definitely check them out. All articles are by CF patients and their families on real life struggles and achievements. http://www.cfroundtable.com/
I heard some awesome news about CF advances today as well. Since Im a Double Delta F508, of course Ive been watching the new clinical trial and the results are looking good.
Check it out yourself:
http://www.cff.org/aboutCFFoundation/NewsEvents/5-7-Phase-2-Kalydeco-VX-809-Interim-Data-Results.cfm
Thats all for my CF blogging :-)
Normal life talk:
Rainy icky weather today however I was able to get some girl time in with my bestie or whom I like to call my sis, Leia :-) we went to the mall and Im sooo proud of myself, I didn't buy anything, other than a new hematite ring for $1, to replace the one I broke yesterday. I stay on top of it, I love their jewelry since I cant wear the 'fake' silver :-)
Leia and I have been friends for about 8yrs. We lived together off and on between relationships/in relationships. 18months ago, she made me Godmother to her beautiful daughter :-) She lived in Ohio for a year but shes back home!!! yay me!! They both will be with me at my walk, very exciting! She is pregnant again and well as of yet, we dont know what shes having but I STILL CANT WAIT!!
My other Bestie/Sis that I will mention alot is Stephanie. Stephanie and I have known each other practically all our lives. We met 22 years ago :-) She and I are very close at heart, however she still lives in my childhood area about an hour from where I am now, so we plan ahead for all day events :-) ALWAYS a good time. She has an 9month old little boy, whos adorable!!! She is also pregnant again and having another boy and....wait for it...wait for it....SHE ASKED ME TO BE GODMOTHER!!! YAY!!!
Heres the kicker, my sisters are due days apart from each other, Leias due Oct 15th and Stephs due Oct 19th :-) and They WILL be at different hospitals an hour away from each other. Wish me luck!!! I made both of their first childs births, I will make these too!!!
Thats enough for today! Happy Monday!!