Speaking @ Sangamo, Headed to Phoenix, Hydro Walk

The trip to Sangamo last week was good, a little stressful on my part although that having nothing to do with the actual trip there. I think my talk overall went really well and seemed to raise many interesting questions and interesting points. Afterwards 1 of the Sangamo MD-Researchers came up to me to ask a question and asked if anyone on my Team had ever done further testing to see why I have such moderate MPS presentation but such mild outward appearance. It was actually a really interesting conversation and I wish I could remember who it was that had asked me!

Needless as I've written here my Metabolic Genetics dr. has done the whole exome sequencing and just taking a long, long, loooong (nearly 2yrs now) time to get the results. This delay in results is due to the testing was done under a study or some special way so it doesn't cost my insur. anything but in turn the results take a lot longer due to being done when time permitted I believe (it was something along that line).
In reality whether there is or is not something else going on thankfully I've made it through the worst of surgeries i'll likely face (the Open Heart Surgeries!?) and when we do get results I think many on my Team are very curious to see what the sequencing shows.
Simply out of curiosity if I remember I plan to ask my Cardiologist about the testing overall or what his feelings are in general (he also felt there may be something else in addition to the MPS I going on) when I see him coming up.

                                        Sangamo - (Photos hanging at their headquarters)

Otherwise the CSF leak is pretty well healing up, it seems there are still some periods oddly enough where fluid forms and the only way I know is I feel better and so then I (lol, I know maybe weird) feel to see if there is a CSF bubble on my back and there usually is a small 1. Thankfully this has been occurring quite a bit so I have more periods where I feel good than periods where I don't and it seems if I get up and move around aggravate my back a little it aggravates the area causing the leak to open up or increase or something. Whatever it is I'm not complaining as I am flying out to AZ (Phoeniz, to Hydrocephalus Walk) Fri this week and volunteering at that most of Sat. Will be GREAT to feel better for it!!! Also makes flying much more tolerable!

                                Speaking at Sangamo, Sangamo Reps, Halloween and new Car 

                                                             
On a completely separate note my car has had some issues lately and have had to do quite a bit of repairs on it (my car has over 200,000 miles, I drive a lot) + this last wk was really being weird. That amongst a few other things was a nice source of stress while I was in CA! Anyways I've never really known what my credit score was and honestly thought it was probably pretty bad (I can't really say why I would think this I do pay all my bills on time, have 2 store credit cards that anytime I use them I pay the charges immediately after I use the cards (so I can get the discounts! =D ) and often just pay the charges in full right away. Well anyways so I couldn't get there so my Dad went to the bank and talked to Loan guy he works with and that guy called me + I apparently have really good (excellent apparently!) credit rating. So I went searching for a new(er) car. I didn't want to buy brand spanking new - I like buying a different car every 4 or so yrs but found a 2011 Chevy Aveo with really good mileage, very small, great MPG (what I ALWAYS look for b/c I drive a insane amount) and is cute. I go tmrw (Thurs) to sign the papers for the loan but have about a 1/3 of the total cost I am paying down so my loan payment every mo won't be bad (and the quicker I pay it off the quicker I can drop full coverage insur!). I like my car now but I guess will be fun to get something new?

Will update soon, maybe sometime next wk after I get back from AZ, Dr.Bragg is slated to speak at this Walk I am going to although she messaged to let me know she is on call so she's hoping she'll still be able to come. We are going to try and see each other 1 way or another. I am hoping! I will always be grateful to her, probably especially so b/c not only she took on my care and never gave up but now she's remained steadfast in helping me this past year despite she's in AZ now. She's amazing and I am grateful to count her on my Team yet even if from a distance!
There are other symptoms going on but another day, another update and it isn't pressure so as I wrote above I am enjoying that however long it lasts!
Thanks for stopping by,

Erica