Friday, April 29, 2011
I think it's a little like trying to change yourself to someone elses standards so they will like you - in other words become a cookie cutter of what our world views as acceptable. Ive always felt probably bc of how I was raised with 4 siblings and taught to be independent and independent thinking that I am the person I am and while I dont have to purposely try to alienate people I also should stay true to who I am and those beleifs I have been taught. While ive learned many lessons in keeping opinions to myself there also has to be a way for people to be able to share their own experiences and be a part even if their experiences havent been the 'mainstream' way... A friend of mine who also lives in the MPS world although with a child and I often talk about this, how with these disorders you would think there would be more all around openness and acceptance to what others think but when it's not within the realm of what people "know" people often refuse to "see". Ive never been the type to reach out and stay close with alot of people and in this world I think that and having an opinion are the 2 axes that grind a stone for many people. I really believe in our society we need more people willing to stand and not be bent to others wishes, we shouldnt change so someone else sees us as ok but instead stand for what you believe in, represent what you know to be true and judge not what others think because you in fact are the only person living in your body and the others judging know no better because they cant possibly see what your everyday life is like. We all are guilty whether we admit it or not of perceiving someone one way when in fact they are truly a very different person because we simply didnt take the time to listen, look beyond the cover or be open.
I will stop rambling non-sensically now and sign off for the night... will try to update after the Ortho appt at some point tomorrow or over the weekend.
Tuesday, April 26, 2011
Easter weekend was hectic - totally 100% hectic but fun. Both of my nephews 8 1/2 and 4 1/2 where here and sat went with my sister to FDL and took Zan for pics (which I did update new pics but will post easter ones soon to). That was quite funny and interesting - Zan is 100% a ham but was not having much to do with getting his pics done. My sister while we where there going through the 5-7 good pics Zan did take after took a cute pic of Zander, Quinn and I together - Q is draped over my shoulder, Zan in my lap and we look like the Zoo crew ie silly! :0) Easter was also well - the kids and I went to church which is much easier when just 1 but with both was an experience no doubt and during the instruments (trumpets) for I know that my redeemer lives and Christ is Risen Zander had his hands clamped tightly to his ears. Was very pretty but quite loud! My sister, mom and I combined easter baskets this year so the older 2 got wind up wooden airplanes with their baskets (big mistake not buying Zander one to due to the spinning propellar factor!), Alissa my oldest neice got a assortment of small webkinz with her basket (she wasnt able to come nor was my brother so have this) and two youngest got animal/butterfly carriers/butterfly nets and small webkinz as well as baskets which we hid the baskets and then also did a easter egg hunt hiding 60 eggs around the yard at my sisters. Lots of cute pics!
Tuesday, April 19, 2011
Neurosurgery Appt with Dr.Bragg at UW for second opinion per my Nsg's reccomendation is next thurs at 2.
May the peace and grace of our Lord and Savior's death and resurrection be with you this holy week and during the special events we celebrate friday (good friday for those who celebrate this our Christ death for our sins) and Easter sunday for the risen savior!
I am looking forward to being with family and for those MPS Families who are away from home I pray for peace and continued steps fwd.
Friday, April 15, 2011
Thursday, April 14, 2011
Tuesday, April 12, 2011
While I dont see other drs at UW Hospital (all drs are in Milw and a couple in Mn) It turned out to be good since I also met with the Pain Coords (adult and Peds Coords) I work with at this particular hospital and we are going to start working on a state wide meeting for Pediatric pain outreach and awareness meeting for families and for professsionals with the plan to have 1/2 the day for professionals and 1/2 the day for families but w/professionals in attendance. The goal would be for this to occur in about a year or so and just trying to reach out to schools (school nurses in particular) and hospital staff so that people start looking at this issue more (bc kids as you know cant verbalize their pain and parents do not always know what to look for and providers do not always ask).I had the Pulmonary testing yesterday which took a little over an hour and a 1/2 due to some issues with a few of the tests which we had to repeat quite a few times and 1 test we scrapped after the 2nd time (5 minute test of pure oxygen and a flush to rinse out nitrogen from the lungs while breathing through a tube each time) and tried a different test altogether inside of a sort of sealed box. I see my pulmonary dr (or one of them this particular one is sleep medicine pulmonary) on thurs so will get those results and her opinion of the cardio-pulmonary issues and what she thinks and then will do the sleep study next week. Ironically when finally leaving the pulmonary tests monday after ERT I ran into my other pulmonary dr who is the dr that originally referred me to this dr I will see thurs. I also see Pain mngmt for normal fup and Orthopedics this week. All for now will update soon. Take care Erica